Monday 16th April 2018
A recent experoiencve on Facebook. "Oh, I agree, Peter. I suffer from Sjogren’s Syndrome too but I'm sitting low on the spectrum. In May 2017 I was diagnosed with another Auto Immune Disease called ITP (Idiopathic thrombocytopenic purpura), which is much more debilitating needing constant monitoring and treatment. Death comes to us all, the difference lies in the hereafter. Grace and peace to you, Peter."
How lovely to read your contribution. I too am at the lower end of the spectrum but stemming from that is various Auto Immune problems potentially contributable to Sjogren's including diabetes 2, so collectively I can never be too sure of what actually is wrong with me at any particular moment. The collective whole requiring continual monitoring!
" Yes, so it is with me, although the ITP has to do with the destruction of my platelets over 2-3 months which then requires Immune Globulin Infusions and a 4-5 week course of Steroids to increase the platelets to a less risky value. At the moment there is talk about removing my spleen for more advanced treatment. Such is life! I am quite at peace with the procedures, it is the constant fatigue that robs me of some quality of life. My clinical depression is mostly controlled by medication but fatigue plays a role there, too. Still, there are days I enjoy life, and I am thankful for those moments.
Thank you for your kind response, Peter, not many people understand Auto Immune Diseases.
Saturday 14th April 2018
MOVING ON... ?
It is with surprise I read my previous entry. It is a state of circumstance I had completely forgotten which is encouraging since it implies a lot has happened in the mean time, or that I have been so absorbed I have not noticed how time has passed. I am just emerging from a period of complete loss of energy, having previously had pleurisy, raising a false concern for a heart attack from which has developed a concern for my heart. One tends to forget the heart is merely another muscle!: it can have its own problems or simply respond as a muscle to muscular problems generally! Electrically and physiologically I appear to be "o.k." but I took the opportunity to discuss emergency procedures with my GP and gradually, through discussions with my immediate family, I am beginning to formulate a "close of play" scenario which can be legally registered as directing proceedings through their necessary finality. This is not a body that intends to hang around.
Friday 19th January 2018
Several matters have arisen, causing me to review everything and finding I have forgotten precisely what is actually wrong with me! Ironically, having been down for some while I am back up again, having to remember exactly what it is that is wrong with me and why! Fatigue and joint pain is the most consistent but fatigue might have been covering something else which we are only currently finding out. Dry throat and eyes are the main symptoms but so far eyes, with other more serious complications are being managed well and throat and mouth are not usually problematic—fingers crossed. It is fatigue that is the killer and sudden realisation after a long time (but for how long?) I am suddenly feeling almost seriously honkey-dory!
Wednesday 26th April 2017
"Good morning world. One P Such Esq reporting in. Just wishing to share with the world that this is one of my "I'm with it!" modes," opened my last entry as recently as Friday 10th February this year. I thought it had been longer since my last entry here. Looking back further I perceive no great difference for the last two years. Speaking with my cousin over the weekend he was admitting to various aches and pains periodically, striking a chord with my own assessment as to whether my problems were too easily presumed to be as diagnosed but in fact merely emphasising underlying problems woken by natural ageing. At least my head is clear ehich is very imprtant to me but planning a long absence, sudden bouts of fatigue can be problematically with hotel bookings.
Friday 10th February 2017
Good morning world. One P Such Esq reporting in. Just wishing to share with the world that this is one of my "I'm with it!" modes, especially those who have no cause to be happy. I don't usually broadcast my miseries but I do have them and when things are hunky dory I like to share, in the hope I send some vibes of cheer to those less happy. Wishing you all well.
I grabbed the moment to go shopping and until I discover something I forgot, I can see myself through until after all currently envisaged potential storms are on the mend.
The foregoing from my Facebook page. BBC "Daily Politics" currently on, with coffee, then lunch time soup or a sandwich over one o'clock news, then work if, by that time I have not crashed out again! Accomplished and for the moment, ploughing on!
Monday 6th February 2017
Not really any more to say but relating time is sometimes helpful. A second arousal continued for several days and I was hopeful I might be getting somewhere but yesterday I descended into a deep lethargy which has only risen to the degree of general tiredness, safe to drive to shop but no long journeys, if that. Morning started hopefully (as did yesterday's) and now, some 16/18 weeks into Hydroxychloroquine, I feel I am nowhere forward!
Wednesday 28th December 2016
Not quite the New Year but having moved on from Christmas, New Year attitude sneaks in, possibly because I'm suddenly feeling almost normal. Possibly I had a minor bug for a couple of days as I have been laid flat by total exhaustion having managed to be physically "with it" on Christmas day when I wished to drive to family to share lunch. Catching up on mail etc I chose to reply to a contribution on fatigue. I don't usually respond to discussion groups as my problems are diverse and I can never be sure what is causing what condition. On the question "Fatigue all day. Insomnia all night. Can you relate?", however, I replied as follows.
"Hi. As one of my consultants wrote in his report to my GP "...he is still plagued with fatigue which, as you know is difficult to manage." The trouble is that when you have several things wrong with you medications can counteract one another. I possibly have type 2 diabetes as a result of Prednisolone, prescribed for Sjögren's syndrome, originally diagnosed as SLE (systemic lupus erythematosus). Prednisolone has been reduced from 7.5 to 5mg and Hydroxychloroquine added. 12 to 24 weeks to see if it is effective. Thought I might be gaining some benefit at 12 weeks but then crashed out again. Change required in diabetes administration Atorvastatin, has that countered Hydrooxychloroquin advantage but another 12 weeks to go..? So one ploughs on. Used to suffer from insomnia now sleep extraordinarily well, usually straight through the night but wake up as tired as when I went to bed. Fatigue/"with it" phases can run for several days/weeks, sometimes fits and starts in the same day. There are medications for narcolepsy but cannot at this stage comment. Can you take naps during the day? Is sitting in a chair the best way? I sometimes wake around 3.00 but manage to get off again just lying in bed. [photo is 40 years ago, oil painting by a recently deceased friend]
Thursday 16th December 2016
Seemingly normal start to the day. A gentle "lack of energy", like floating on a mill pond where momentum is achieved by simply thinking. Interesting way of expressing myself. Is that meaningful to anyone else? The interactions of tiredness are fascinating: body, mind, soul. They are all variable dependent upon the nature of the physically effective fatigue. Monday was a half effective day. Tuesday a complete wash out. Wednesday moderately successfully productive. Today, I have much through which I can meander with a lightly intuitive mind on which too great a strain of intellect should not be placed. Therein lies the complications of fatigue. How alert is the brain and its ability? To what extent am I aware, can connect meaningfully in all aspects and to what extent am I aware of my brain's competence outside of myself?
Sunday 11th December 2016
Just drawn the curtains. Dry but dismal grey outside. Cold. Nearing the shortest day and the world re-grows and once more says "Hello, welcome to a new year and a new journey." Today is one of those "damned nuisance days". A few days ago, optimistically full of energy (comparatively speaking), new drug regime showing effect? No. Just a phase. No production today, crashed out completely. Zonked. Expletives! Literally, getting evening meal is going to be pain.
Saturday 10th December 2016
Disappointingly no change. A good night's sleep in that I got off reasonably quickly and slept through to 05:30. Seemed reasonably with it and dozed to when the heating switched in (06.20) and greeted the day around 07:00. Breakfasted (porridge), toast, coffee, caught up with the news and turned to work, at which point I suddenly realised I was crashing out. I have. I have set this weekend to get Christmas cards away and I will not waste the time, especially as it is a fairly mechanical function, except that this time I had intended re-organising my database. Opportunity blown! I'm mentally not up to it.
Disappointingly, I had to write off the rest of the day, exhausted.
Friday 9th December 2016 A REVIEW
Well, a pause and review. This page was started as part of the general desire to share experiences that may help to link fellow sufferers, aiding their understanding of their own problems through hearing of how other people have coped with similar experiences. In that vein I offer my own small contribution.
Below is my start history. Here, today is the first time I have looked at this page for nearly eighteen months and so part of my update is re-organisation, for which I have too little time at this moment and probably much could simply be ditched. I started typing this last night but lost it due to system overload. At the time I bought this AppleMac I thought it was sufficient. In a way that is encouraging. I am still creative, obviously had too many projects running and Dreamweaver does not automatically save like Word does. Expletive!
So, where am I? Re-writing what I wrote last night and lost! This morning is an entirely different story. I have had a good night's sleep ... and have woken up completely exhausted.
In so much of these medical issues each person’s experiences are unique to them, yet there is a commonality across diversity where knowledge, seemingly unrelated, opens a wider understanding of one’s own problems. My problems are not simply Sjögren’s syndrome, which is why I do not contribute to more widely available conversational blogs. As at present, my health problems are: cystic lung, probably due to Sjögren’s syndrome; non Hodgkin's Malt lymphoma [mucosa associated lymphoid tissue on lung biopsies]; Addisonian [lacking in cortisol can lead to shock, hence Prednisolone]; Diabetes 2, possibly brought on through use of Prednisolone.
So we go on. I update this page because I have a better understanding of my problems and this week uniquely experienced them. It is also a part of my wider life to be suddenly pro-active in how my health is affecting me. In fact, as I write I realise that these paragraphs should form a new description of the whole. I have a review in two weeks with my diabetes nurse to review the effect of Atorvastatin, one of which precautions entails watching amounts of grapefruit juice and I've been concentrating on fruit intake! This is for cholesterol reasons but could it hamper the intended effect of Hydrooxychloroquin, countering the reduced dose of Prednisolone intended to counter fatigue?
Friday 9th December 2016 [morning and running over lunch plus!]
Picking up from yesterday's work which has all been lost due to an overload—expletives! This page is also old format and does not have the later sophistications so, c'est la vie!
The week started well. Several weeks previously I had booked a theatre ticket and a dinner function the following night but had desisted from staying over night as that would have required two nights should I find myself needing to spend all the following day in bed. Such are the problems when fatigue is an inherent part of your life. One is for ever considering, "suppose on the night I cannot make it?" Money down the drain.
Monday I collected Atorvastatin used to improve cholesterol levels and decrease risk of a heart attack and stroke. It does not like grapefruit juice and a diabetic condition requires an emphasis on fruit! diabetes can also cause lethargy just as Sjögren's but also emphasises the need for exercise! How can one exercise when suffering deep fatigue? On top of which I am approaching a crucial marker with Hydroxychloroquine! This was part of a re-adjustment for a Sjögren need. "You won't notice any effect for 12 to 24 weeks". It is now 12 weeks or so that I started it, is that why I am feeling "with it" or is that just a chance circumstance as happens? Now, at the tail end of the week, it appears it was just one of those moments ... or was it? I'll raise the matter in a couple of weeks with the prescribing diabetes nurse, prior to a much later scheduled discussion with the doctor who prescribed the change for Sjögren reasons. So we go on!
To add further to the original "seeming" simplicity I took the Atorvastatin immediately and found myself mid morning Tuesday feeling sightly nauseous (could be the Atorvastatin) so I declined the second dose. The last thing I wanted was to feel nauseous in the Festival Hall. Apart from that I was 100% "go"!
Simply, I sauntered through the day then caught a not too early train. Totally, the day used 3.7 miles, not bad but not so great but I was reasonably "normal" in sense of "get up and go". Tumbled into bed and slept well. Wednesday, however, I was not so sure but walk was shorter and I could use taxis. Persevered, walking to station and met a pleasant travelling companion by chance with whom I was engaged in conversation the whole trip. She, a director of a couple of companies and her husband was a surgeon. Four children, one just left my old school. A pleasure to hear her positive reaction over so many years coinciding with my own knowledge from a different perspective and a different age.
A pleasant dinner but a slightly disturbed night. I used to suffer insomnia but since my various complications have taken charge I surprisingly sleep deeply and easily. Unfortunately I awake as tired as when I went to bed!
Thursday was wasted. I was back in my tired state and simply lolled around. Today, a more meaningful effort and although allowing for interruptions it has taken me the day to prepare this page for posting. It raises the question, am I capable of anything?
BACKGROUND INTRODUCTION THEN UPDATES IN SEQUENCE BELOW THE LINE
Tuesday 28th May 2013—An Introduction
This has been in my mind for some time, that point at which sharing personal experiences becomes almost an obligation, to make a positive contribution to the collective whole and is no longer simply publishing a personal diary to say, "Hi, I'm over here, please notice me."
This page is also tied up with the changes being continually wreaked through the UK NHS. Many have slated the NHS. In many news items I have examined there have certainly been many extraordinary outrages. Perhaps I am particularly fortunate but I have no such angst at the present time and it therefore seems fair to balance the outrage reportage with that other view. I am a person who believes in making one hell of a fuss and dance when he doesn't get what he thinks he is entitled to but I also believe that places an obligation to take the time and trouble to say when I am particularly satisfied as at "Personal NHS experiences".
I have also experienced a diversity of hospitals and consultants and therefore feel I have a reasonably diverse experience worth writing about, as well as giving publicity to some of the complexities, even at a comparatively simple level, that can involve time-consuming diverse needs of services.
As for the clinical nature of Sjögren’s Syndrome, I will leave the reader to do their own googling. There is no simple answer and the effect is highly individual. Google can give the background, I can give a particular personal experience and interpretation
Tuesday 28th May 2013—The Saga Opens by Trying to get to Grips
Last night I was concerned I had over-stayed my welcome, in that I felt TV-energetic, yet also tired. I hit the sack just after midnight and in fact slept through until 06:00hrs, clearly very deeply and feeling not so unrefreshed as usual, just lightly tired. My eyes were heavily encrusted and dry requiring immediate application of artificial tears. I lay for awhile to let drops have their effect and also to gradually come to and acknowledge the day.
The morning has progressed with some physical effort involving concentration on PC and light breakfasting. It does appear that the last two months of continuous fatigue have slid into an earlier state of light, general tiredness but nowhere near the superb energy I was feeling at the beginning of the year.
The present disinclination to do anything physical may be psychological—I always feel there is a tendency to light depression through feeling continually tired over extended periods—or may be due to shortness of breath. Shortness of breath is a Sjörgren’s tendency but since my lungs (while not great) are basically as they were two years ago, I see no connection with this sudden (with the fatigue two months ago) development.
Now, at 11:30, would seem a good time to break from the computer for a coffee and possibly a kitchen tidy up, before preparing lunch—a simple bowl of soup. Eyes are again gummed up, crystallising and feeling dry. Breathlessness most amazingly seems to have receded quite considerably.
Thursday 29th August 2013—Learning Something New
A new discovery. Following an interesting reminder that hospices are not simply "end of the buffers" termini but also "through stations" for ongoing passengers needing a momentary break [Hospice of St Francis, Great Berkhamsted], I further researched tiredness/fatigue, isolated from Sjögren's connections and discovered the following. I am not suggesting CFS/ME is in any way related but the suggestions for understanding and addressing the tiredness problem under CFS/ME may be helpful.
What is chronic fatigue syndrome/ME? Chronic fatigue syndrome (CFS/ME) is a condition that causes marked long-term fatigue and other symptoms which are not caused by any other known medical condition. CFS stands for chronic fatigue syndrome. Chronic means persistent or long-term. ME stands for myalgic encephalomyelitis. Myalgic means muscle aches or pains. Encephalomyelitis means inflammation of the brain and spinal cord. However, there is controversy about the nature of this condition.
There is no test to diagnose the condition. The diagnosis is made in people who have a certain set of symptoms (which can vary in their type and severity). There is even controversy about what to call this condition. The most common main symptom is persistent fatigue (tiredness).
Regarding tiredness/fatigue, one of my consultants described the difference as: Tiredness–a car with a flat battery; Fatigue–a car without a battery at all! I subscribe to this definition with heartfelt assurance!
The fatigue is of new onset. That is, it has not been lifelong but started at a point in time and causes you to limit your activities compared with what you were used to. It is often felt to be both physical and mental fatigue, and said to be overwhelming, or to be like no other type of fatigue. For example: It is very different to everyday tiredness (such as after a day's work). It is not eased much by rest. It is not due to, or like, tiredness following overexertion. It is not due to muscle weakness. It is not loss of motivation or pleasure which occurs in people who are depressed. The fatigue is often made worse by activity. This is called post-exertional malaise. However, the post-exertional malaise usually does not develop until the day following the activity. It then takes several days to improve.
Those last two sentences encapsulate an awareness which I have only just realised in myself, trying to rationlise all day tiredness yesterday, suddenly feeling I should exercise last night and walking a couple of miles on Ashridge. Last night, having dozed in the chair before bed, the two events possibly being connected, I wake this morning totally exhausted, very tired and completely lacking in "get up and go". This has evaporated during the morning, during which I have been able to do some desk work, intending to settle into the Syrian debate and then repeat the exercise tonight(?). Also, but tying in with known Sjögren’s symptoms, backache and general muscular weariness was suddenly apparent. I have also noticed that when I have forced myself to do some exercise on principle, I have been exhausted for the two or three days immediately following.
However, I have other symptoms which are definitely Sjögren’s symptoms and I am not suggesting there is any connection with CFS/ME, merely suggesting that advice on how to handle Sjögren’stiredness/fatigue may be discoverable under other illness headings.
CONTINUING THE SAGA WITH THE MOST RECENT ENTRIES ON SJOGREN’S AT THE TOP
Wednesday 7th DECEMBER 2016 [morning post]
SIMPLY CONTINUING, EIGHTEEN MONTHS AFTER MY LAST INTERACTION
This implies there has been nothing else to say. Yes, simply! Merely ploughing on but other matters have intruded. Possibly caused by my use of Prednisolone I was diagnosed diabetic some months ago
Wednesday 20th May 2015 [morning post]
As Tuesday’s heading notes, I plough on regardless and I am now midweek. I had intended Watford, as previously described, but this morning the world has changed. All aches and pains have departed and I am actually fully functioning, almost as normal as I used to be. It seems (touching wood) that I am currently at the outer periphery of Sjögren problems. I was concerned about my teeth disintegrating but they seem to be holding up; my lung problems appear to be basic lymphoma, due to inflammation caused by Sjögren’s syndrome and I actually have a medical conclusion that my lung cancer was not caused by my cigar smoking, nor likewise my throat problems either.
During the last few years I have met a diversity of people in various stages of compound problems and have cause to be very grateful for the minor (by comparison) problems my health continually causes me. Damned nuisances are simply damned nuisances, get on with them, too many have much more serious issues with which to contend.
Hermes is now advising what has happened. The purpose of digital communication is to advise what will happen when. At the moment they don’t seem to have a clue. It looks like a three day delivery is going to be a four day delivery!
Tuesday 19th May 2015 [evening post]
PLOUGHING ON REGARDLESS
Whatever problems presume to defy one’s progress there is always someone else having to dig a deeper furrow in heavier clay. My clay feet have suddenly acquired a new lightness and optimism rises beckoningly. I will back track to last Saturday when I decided I would share my experiences, initially here, then copying the entry to my Sjögren’s Syndrome page.
I quote from my private health diary. “History: Friday night restless with a major ache in my right arm, upper and lower part above the elbow. No painkillers used at all for two days but always on the verge of needing them. That I did not go over the verge is primarily due to complete exhaustion, making the effort required for pain relief that night too demanding for the level of pain relief I felt I required.
Saturday I slept ok and thought I might make church but in fact on Sunday morning I felt too tired. Lightly tired all Sunday, then feeling all was okay. I slept Sunday night but aware of crippling ache in right hand, then in left hand thumb area. Both pains eased away during the day but I was obviously not in a fit state for doing anything physical so stayed in, coping with minor miscellaneous PC work as my mind could not concentrate because of the stress and general aches.”
Monday I seemed fit enough to drive but not strong enough to mess around with the gardening bits and pieces I needed. In any case the weather was wet and miserable so I stayed in.
Tuesday I am waiting for a delivery. Digitisation has just advised me of the intended arrival of my delivery over a period of an hour with over two hours of advance notice. Not bad. Regretfully, other items from another supplier have been confirmed as in transit but the hyperlink does not yet connect with the expected arrival time, although I was not expecting that until tomorrow anyway. In the mean time it has suddenly dawned on me that this is a confounded bank holiday weekend and I had better look into hotel arrangements… but first check, is the day confirmed? It is. Hotel booked and subject to experience this may prove to be a useful hotel for future reference.
My health is now light with everyday easy normality and sufficient effort and alertness to be safe to drive should I wish to do so. This raises a debate, which continually exercises my mind: the interaction between tiredness and depression. Does either cause or affect the other? What is their interplay?
[Interruption. Just as soup was reaching pouring heat DPD turn up! Offloading was simple and efficient, good. Unfortunately, Hermes is not so good. I am still not receiving acknowledgement my goods are in transit despite the supplier so advising such information is available.]
I have now returned from a happy shop in Waitrose, having dropped into one of my banks and popped into the garden centre. Great Berkhamsted must be unique in having a major private garden centre in almost the centre of town! I hope I have made the right decision. What will result? I am fascinated with something I saw and somewhat jumbled in my mind as to what I want to do. Matters now depend upon my knowledge of Hermes’ potential encounter, as I need to go to the de Haag centre on Watford’s outskirts for a variety of other gardening incidentals, an odd choice for someone who does not have a garden but there is an odd patch of beaten up grass, due to inexpert relaying of ground dug up to attend to a water pipe—a pipe laid by builders who thought bending a plastic pipe round a stone where the pipe would throb as water coursed through, so wearing its sleeve against the sharp stone as to eventually cause a burst. I was thinking of adding another taller tub planted with a clematis to add a variation of height and a wider splash of colour spreading down and around.
SATURDAY 21st JUNE 2014
SEEMINGLY BACK TO NORMAL
Back to normal. Extraordinary. No rationale but the irrationality of Sjögren’s for the moment, so get on and enjoy. Ah well. Others have more travails than I. Apart from a slight tiredness I can't recall when I last realised I was feeling perfectly normal.
FRIDAY20th June 2014
Extracted from my WeeklyCommentary
Simply, having Sjögren’s means anything untoward may not be what it seems and requires detailed analysis. During the course of Monday I found myself implanted on the lavatory, emitting foul smelling liquid and throwing up in the bath, as in my rush I had forgotten to take a bowl in with me. In the space of twenty minutes i found all energy falling away from me as if being sucked out by a Dyson. We used to say Hoover, until they decided to evaporate the company, by giving everybody cheaper foreign holidays than their machines actually cost them. I never quite understood the economics but then many economists don't seem to understand the economy either. I digress.
Suddenly I did not have the energy to sit up straight and would have simply lain on the floor if not galvanised by the realisation it would be I who would have to clear it all up. A good moment to think of all the most odious jobs paid people have to do in hospital scenarios of which most of us ensure we are completely oblivious. A good factor that needs to be seriously dwelt upon when considering what so many do in hospitals, unnoticed and unclaimed. In thinking to clean up my own mess it is quite another to clean up a complete stranger's, particularly if they are so unaware as to not notice, let alone show signs of appreciation. Something mothers do instantly without thought and too many "modern" fathers also choose to ignore. I'm a bachelor and hope I would have been a proper partner had I married but frankly, I'm not so sure.
I was now at the crawling stage on hands and knees between bed and toilet or using the bedside bowl to save the crawling. During Tuesday I decided I should ring the hospital to cancel my Wednesday's appointment but decided that was too short notice for someone to be advised to take advantage of my condition and as the day wore on I realised that I might make it after all. By Wednesday morning I was aware I was gaining sufficient control and state of mental alertness as to be able to undertake an hour's drive safely and without dire incident.
My fifteen minute session with the thoracic consultant neatly sums up my interaction and current views on the NHS. "How are you?" "Momentarily thrown and feeling somewhat delicate but let me answer you first in general update terms, to make sure you have the whole picture and then Ill deal with my immediate problem. Pretty hunky-dory generally, everything seems positive, so let me quickly run over my other sessions."
My attitude is that subject to any impeding disabilities it is the patient's responsibility to be in charge of their own care and to keep appropriate notes neatly organised to cover contingencies.
"Oncologist: tests more or less as last time, 'see you in six months'." Rheumatologist: retired, new one, all at sea trying to get to grips, especially as he has come in during a major procedural change and one of the nurses thought he would still be there at 9:00pm in the evening. Very pleasant chap, I'm sure we will get on."
"Now I notice he thinks your cancer is due to cystic fibrosis. I thought we had agreed it was due to the inflammation caused by Sjögren’s, I'll adjust his notes." Good, interaction was clearly taking place. "Now we don't seem to have done a lung capacity test for awhile." "Yes we have, about four to five weeks ago." "Ah, I thought I had booked one in but I don't seem to have received the report." "Come to that, I haven't received a copy either.Fortunately the operative this time was willing to chat me through it so I know the results were more or less as previously if not slightly improved." "Oh, that's helpful, good, nice isn't she, she's Portuguese?" "I had realised she was foreign but had not assessed her nationality. She was very young and obviously unfamiliar with things as she had a technical problem.' "Oh yes, that does happen, there is often discourse between us and our lab people, sometimes even with the manufacturers, its the complexity of the software. It is often us telling them things from our experience rather than necessarily us asking them but sometimes our own technical staff get hung up on something." "That's what happened this time, your lab people were consulted on the phone and then decided to advise the department to contact the manufacturers direct. I thought we were going to lose the after-noon but they got it going again within half-an-hour."
Then, of course, there is the dietician through my GP. His blood tests indicated potential Type 2 diabetes. She recommended minor adjustments to my diet, wasn't in a flap about it, wanted me to lose a kilogram in six months and technically could describe me as diabetic. I said that if it wasn't essential, "no" as I was about to renew my car insurance and I didn't want the hassle with DVLA sooner than necessary. We then pushed the date back another six months and the other week a year on from the first warning result apparently the blood balance is slightly improved. She doesn't want to see me for a year."
"The dentist couldn't repair a shattered tooth and we decided to leave the stub as it was. Fortunately the nerve had already gone and the rest of my teeth are not yet greatly disintegrating [another fad of Sjögren’s]. The ophthalmologist confirmed a vestige potential of glaucoma but high blood pressure behind the eye is responding to drops and cataract formation remains slow. That puts you in the whole picture"
"Now, what's your immediate problem?" I listed what I have previously outlined here and concluded: "Speaking subjectively, all I think happened is that I allowed myself to catch a stomach chill. I've been aware for some time that my body temperature control is at least slow to respond to temperature changes and with travelling and changes in the weather over the last few days, when I did strip off, as I used to do as a younger man not wearing a vest, I allowed myself to catch a chill."
I recall, many years back, seeing an elderly man basking in the summer sun on his lawn while still wearing a winter weight cardigan, while I was in summer thin cotton shirt, shorts and bare feet in sandals. I commented on it in one of my "Suburbia" poems in my bookGone Fishing! [not yet available electronically]. It seems I've reached that age!
"YES! It is absolutely crucial you do not let yourself get run down. Don't be worried about possible side effects from the steroids causing you glaucoma, that's a separate issue.The amount you are having is only the amount your body would normally provide were you functioning properly [again a clear example of interaction between the professionals] and in a hospital situation we would have immediately doubled the dose for the period of your illness. I'll write a note to your GP." "I had appreciated, when all energy simply evaporated from me in just twenty minutes, that the extra dose you had prescribed had been having a beneficial effect. The last six to eight weeks when i have been fatigued, it is really extreme tiredness, in relation to when I had previously felt fatigued."
"All in all I don't think we need meet again for nine or twelve months, let's say nine to be on the safe side, Cheers!"
FRIDAY 29th NOVEMBER 2013
I shall place the details on my NHSexperiences page about the colonoscopy experience. For now, it was simply a damned nuisance that having got myself seemingly sorted and heading for a gentle run into Christmas, to have suddenly my schedules totally thrown out of gear, put my back up, especially as it seemed unco-ordinated with my other perfectly satisfactory relations with other aspects of my health: rheumatology, chest, oncology, ophthalmology.
What I can confirm is that the 2.5mg increase in Prednisolone has defrayed the tiredness problems extensively and it is marvellous to feel almost completely normal. Pacing as always is key and having energy 'to do' it is also most important to stop the 'too tired' excuse for not exercising. Grab the energy levels but also ensure there is regular small rests. Whether this will have a negative effect on my desire to reduce weight remains to be seen. For now, aided by a crash fasting for colonoscopy needs I got my weight down to 81.5Kg, although it soon shot up to nearer 82.0Kg Eighty-two is where my dietician wants me but I was 87.9Kg four years ago. Being advised to eat well I never gave thought to adding "wisely" and carried on enjoying life and exploring the trials and tribulations that accompanied me. With Christmas round the corner it would be sensible to keep getting my weight down to allow a leeway for Christmas. My diabetes is not yet at any critical level so I can, with care, enjoy uninhibitedly.
TUESDAY19th NOVEMBER 2013
I write in a state of mixed emotion. On the general health front I have never felt so fine since the present series of health events started several years ago. Ignoring any down path that age might imply and which I totally ignore, I am nearly as normal as I have ever been. The latest suggestion of increasing Prednisolone by 50% seems to be countering the slips back into tiredness I had been feeling and enabling me to cope more positively with those sensations. I had held back from trying this earlier, partly because I had entered upon a natural state of "high" and did not wish to miss any enhancement that might be, if there were to be any enhancement gained and partly because I am trying to get my weight down, anticipating soon to be formally diagnosed as diabetic. Prednisolone can encourage weight gain.
All very positive, as I am planning on being in America next May for my goddaughter's wedding, probably my last trip to the States. The cloud is that the national campaign for biennial bowel cancer tests has thrown up a query on my condition. Apparently these tests are too sensitive and could well be throwing up a Sjögren’s inflammation that is none too serious. More specific tests are intended to be introduced next year. In the mean time, checking out travel insurance is pointless until I know precisely where I stand on all aspects of health: Sjögren’s Syndrome; MALT lymphoma in both lungs. So, precariousness leisurely approach to gathering momentum is suddenly thrown asunder with unplanned attention gathering interruptions. Damn.
FRIDAY 8th NOVEMBER 2013
Only comment of value is to find time has simply confirmed my discoveries of the 29th of August. Post-exertional malaise is a very good descriptive term and helps to clarify the nature of the tiredness being felt. I feel that being able to relate tiredness/fatigue to one's circumstances at any one time is helpful.
Being an inherent diarist: either literally in writing up a diary, or as a manager, instinctively allocating my time through a computer program for client charging purposes, it may be easier for me than others. When tiredness can be caused by different illnesses (mine can be caused by cancer, diabetes or Sjögren’s) any state of tiredness/fatigue can be simply bewildering. If one can tie-in the symptom with the context of one's present, immediate past and one's immediate future intention, I find it comparatively easy to assess the nature of the symptom, its likely cause and therefore how best to respond: defy it; mellow towards it; or acknowledge this is an occasion to accept its reality and to rest until a better time.
Over the last few months I have been experiencing a natural (non drug-induced "high"). Nowhere near where I would expect my health to be ordinarily, even allowing for ageing. Two or three fun occasions with others have been enjoyed almost fully and completely normally. Suddenly, a slow downturn and I have decided to embark upon the latest suggestion to counteract tiredness: an increase in the Prednisolone I am already taking as a counter to my cancer. Will report in a month or so.
SATURDAY 7th September 2013
See Thursday 29th August entry under "Background" above for details but this morning definitely an example of post-exertional malaise. Yesterday not much physical activity but some shopping and then attic clearing and settling in to some reasonably intense mental activity, feeling I had had a good day. Last night a good sleep but this morning total inertia despite willingness of mind to get on from where I left off yesterday and despite intention to some social activity today.
THURSDAY 29th August 2013
See today's date under "Background Introduction"(above) for a new awareness.
MONDAY 26th August 2013
So, where am I, following a week’s good break, despite periodic interrupts due to exhaustion? Continuing, permanently disadvantaged by tiredness, for which there are many possible explanations but the presumption being Sjögren’s Syndrome.
Amazingly, I do not perceive myself as being actually ill, just frustrated, although suffering periodic arthritic twinges; the odd gout bout requiring minor painkillers; occasional reflux and stomach problems and current main irritation is extremely dry eyes and the occasional outbreak of intense shivering as if I had malaria.
Talking with others, I perceive I am “getting it easy”. Other than to acknowledge total destruction of any semblance of social interactivity, however persistent I am in trying to fathom when I am likely to be at my best operationally, I perceive I am lucky and this is my state of affairs for some time to come. Therefore, no further reports for the moment.
SATURDAY 17th August 2013
Thursday night was an extraordinary experience, which seemed to encapsulate all that I had heard but not so directly experienced, save peripherally. Everything simply went completely haywire. During the day tiredness, fluctuating from light through lassitude to extreme tiredness, bordering upon fatigue. Everything went bananas: ENT, gastric problems, including reflux, which led to a sudden watery but small amount of sickness and a tightening of the rib cage causing breathing difficulties but this could be the effect of the lymphoma in both lungs, due to Sjögren’s causing the inflammation from which the cancer developed.
Then, in the middle of the night, I experienced the chill someone at the Hemel coffee morning had described, a shivering coldness that she could not control, despite the number of pullovers she put on. I may have endured a worse experience. If I had not known of this with Sjögren’s Syndrome, I would have seen my GP, concerned I was sickening for something serious.
For some years I had noticed, and put down to the slowing up from age, my body’s inability to adjust easily to seasonal changes. I seemed to require longer and longer periods to make that adjustment to temperature change. I believe this is related to periodically feeling hot and cold within the same room temperature.
Thursday night, my whole body was shaking and my teeth chattering. This continued for some two or three hours, I assume, as I finally got off to sleep and all such symptoms had disappeared upon waking. Having put the heater on to ensure the room temperature maintained a temperature above 74°F I assumed helped. Lassitude continued through until Saturday morning, when I had had a reasonably good night and was feeling only heavily tired, wanting only a light breakfast of mixed fruit, while fluctuating between feeling hungry and yet sick; having a bloated stomach, yet also fatigued, yet mentally alert. Friday night, perversely was a full night’s sleep from which I awoke feeling only lightly tired.
WEDNESDAY 14th August 2013
Deep sleep, mildly refreshing and starting the day with hope of productive work done and evening at Pendley for Love's Labours' Lost. In fact tiredness bordering upon fatigue crept in.
TUESDAY 13th August 2013
Monday's energy continued into today which involved Watford shopping; Welkin visiting Herts central disability co-ordination where I received excellent advice for what may lie ahead and then I intended going to Pendley but by the time I arrived home I was zonked. Slept in the easy chair for two hours and bought fish and chips, spending the evening, listening to the Proms, exhausted.
MONDAY 12th August 2013
It does appear that a pattern is emerging. Alternate days of fatigue followed by a day of energy. Is it just a balancing of energy reserves? Today, superb energy levels, although less than a "normal state". Thinking on last night I awoke this morning feeling slightly refreshed in a "get up and go" mode which lasted all day.
SUNDAY 11th August 2013
Disappointingly, I am going to add a negative experience with the NHS on my NHS page.
Operating with a private optician, they faxed to Stoke Mandeville Ophthalmology department my condition. Regretfully, I did not have my mobile number and although there is an answer phone I wanted to catch the first opportunity of getting things happening, so I sat by the 'phone until Friday noon.
I suggested to my local Boots Optician they faxed another letter, giving them my mobile number as the excuse for re-faxing, without it appearing to be a chaser. Let's be fair, it is holiday time and my problem was a nuisance not a crisis. Instead, he rang and Ophthalmology said, "Go to A&E and we'll follow up later if necessary. Nearly five hours in A&E was a disaster. See NHS page under this date.
Despite spending four days tied to the 'phone or in A&E I managed some work and on Friday evening dropped in on The Crows Nest for a quick bite and then attended As You Like It at Pendley Manor. For now, see this date's Weekly Commentary but I think I will ultimately create a special page for Pendley's Shakespeare.
Saturday was muddling through and both eyes bathed in lacri-lube rendering vision impossible. No problem at night but I had been advised to use during the day time too, initially and that was a nuisance. Now I am certain I still have a problem. Not stricty a Sjögren’s problem bu the fact I have been so exhausted as to feel a tendency to fatigue is relevant. Certainly my present eye exasperation does not help.
Wednesday 7th August 2013
Following a couple of days of uncertainty, I managed to get away one Friday to friends in Taunton, seemingly the choice of a great number of holidaymakers. It appears I am unhappy with motorways as symptoms of tiredness seem to emerge earlier than with other road conditions. Having pulled off at one service station it was only twenty miles later that I had to pull off at another, each stop incurring a rest of half an hour.
Half an hour later, a tailback from road works at the junction with the M5 invited a detour via Bath. The hill top views were magnificent and I managed a continuous hour and a half’s driving without any sense of tiredness. The plan was flexible, to allow variations and I lost two days at Taunton, when I was not fit for driving, being completely exhausted and so losing time to visit one set of friends in Exeter.
Other friends were met with following three hours of driving with two half-hour stops for rests, leading to a surprisingly hectic day, of over 2 miles of walking, along a beach and enjoying decent hotel luxury. WithTaunton friends I had also engaged in more walking of greater duration than I had encountered for some time.
The next day was a hyped early start to Southampton, requiring four half-hour stops from Ilfracombe with only some motorway driving. Another energetic day but as with the previous days at least two hours of bed rest was required.
The following day, on to friends in Colchester, where the journey was completed with similar rests, including a two-hour rest on arrival, before embarking on a reasonably “with it” dinner a couple of miles away.
The next day, a reasonable walking morning, followed by an active lunch and first part of an after-noon of other friends arriving for a celebratory tea, during which I had to retire for some easy chair rest.
Sunday was a complete crash out for the whole day. Some work done on my laptop and then resting on the bed reading the Sunday papers. Lunch time came and I meandered down to the bar for a sandwich with a half pint of Guinness, the rest of the after-noon being spent on the bed! I feel that tomorrow I may be able to manage an early departure and make a return home, not too late to use the day as a settling down return sort of day.
Conclusions? I don’t think my erratic bursts of energy/ability “to do” are influenced by any background shades of depression. They are simply the erratic periods caused by Sjögren tiredness inhibiting continuity of performance and exercise seems not to make any difference. Now, do I have an eyelash growing into one eye due to shingles damage, or is it crustiness, caused by increasing dryness due to Sjögren’s?
As Monday progressed I realised I had enough excuse to book an appointment with my optician, which they managed Tuesday morning. Eyelashes growing into the eye is a result of Shingles damage some while back but Sjögren’s can affect the trigeminal nerve and frequently trigger the sensitivity due to that damage.
On this occasion it was different, as I had guessed from the irritation I was experiencing. A foreign body had embedded itself into the eye. Despite manipulating the lid, the optician had to refer me to Stoke Mandeville by faxed letter, as he did not keep supplies of anaesthetic. I await Stoke Mandeville's call for availability. To some extent I am relieved. I had feared it was an ulcer caused by Sjögren’s ocular dryness and grittiness.
In the mean time, all over muscular aches and pains suddenly emerged having been absent for some time.
Wednesday 24th July 2013
Suddenly, just after midday, all energy evaporated from me and I spent the next three hours dosing. Depressed mood following an exciting weekend and the distraction of Kate and her baby? I think not, as the morning brought the plumber to sort out a pre-weekend crisis and a preoccupation with getting the hang of my new satnav was no cause for a depressed mood.
Tuesday 23rd July 2013
Situation remains deeply puzzling. Concerned I would be unable to make the function, a farewell retirement dinner, I had a superb weekend. I had arrived with sufficient time to reconnoitre, then find my hotel, onto whose bed I promptly slumped, totally exhausted. Three hours sleep brought a second wind which saw me through the proceedings. Energetic and almost completely normal but zonked out completely when I got back to my hotel.
Reasonable sleep after initial insomnia, early breakfast and once more into the fray. Again an excellent day. Monday was enhanced by the news of Kate and so on to Tuesday. Tuesday I feel anxious to get on but happily distracted by keeping an eye on the TV. The weekend gave me the resolution to make my week or two away, although in stages. So far only the weekend committed, with an intention to make the following weekend on the other side of the country! All seems almost normal save for the background feeling of light tiredness and lack of any energy. I also seem mentally dulled. This is a difficult situation to understand. There are times when I am physically tired but mentally lucid; times when I am physically 'with it' and intellectually bright; times when I am physically flat but mentally alert but also can be mentally dulled. All so irrational without seeming cause but these symptoms are all corroborated by others.
Saturday 20th July 2013
The more one tries to understand, the more perplexing the situation becomes. Last night was a reasonable Sjögren’s night, awaking with light tiredness around 05:30. Temperature has dropped, a light wind keeping a sense of coolness and sufficient time has elapsed that it seems my body has adapted to the higher temperatures, it seeming cool, almost chilly at 74°F.
I have frustrations: of a leaking joint as I close down to go away for the weekend; a supplier who found my card unaccepted yet when I contact the card company they have no problem and no record of three such attempts, so the problem clearly is at the supplier's end; and I am way for the weekend in Croydon, not one of my favourite places; planning a trip further on and find my new Tom Tom is not connecting as it should so I am stuck using my very archaic system for the moment. Yet I rally in defiance and seem to be very with it. Raises again the question as to whether background and low level depression is the root cause of my frequent lack of physical energy, or is it just the vagaries of Sjögren’s?
Friday 19th July 2013
Over the last two or three days I have felt as if I had energy to get going but was held back by heat fatigue. This morning my rooms are around 72°F, a lightly chilly draft of air is wafting through the open windows and I know I have energy to expend, which is very pleasant. It is the first time I have felt physically positive for some time. That is not to say I have not regularly felt mentally positive but have been frustrated at physical inability to proceed meaningfully.
Wednesday 17th July 2013
As one sufferer of cancer said on her MacMillan blog: "Being a journalist I took the news of having cancer as a new adventure to follow through." I have also greeted my recent medical experiences as a fascinating investigation into the diversity of the body's biochemistry. I haven't the intellect to study medicine but I find the biochemistry involved fascinating.
Today is extraordinary: the complex ways in which tiredness can manifest itself. I am tired because I have not slept due to the heat. I am also absolutely knocked back during the day. I have never coped with heat. Yet underneath this I sense I am "rearing to go". In other words, feeling "normal" but knocked back purely by the heat, not by Sjögren’s. Fascinating but frustrating.
Monday 15th July 2013
Exhausted. Difficult to know whether heat, Sjögren’s or caused by a combination of both but I think it is probably heat related.
Sunday 14th July 2013
Yesterday, I somewhat grudgingly got myself moving to a local meeting of a new initiative of the British Sjögren’s Syndrome Association. What I don't understand is why the American one always comes up on Google and never previously did I find a British version.
A lovely group of a dozen women, who mostly seemed to be suffering more than I am in their individual ways, although perhaps my tiredness may be of a greater depth than theirs, received me most pleasantly. I was the only male, a not surprising fact since the greater majority of sufferers are female!
I immediately learned of the advantage of interaction. One of the ladies was suffering from the same internal thermometer mismatch and feeling cold all over, quite as irrationally, as myself. Several agreed that a depressive atmosphere/attitude worsened/was an integral part of the tiredness. Another's teeth were disintegrating.
I returned home animated. Had lunch and disintegrated into my reclining chair. Re-energised three hours later by the call of a friend needing help. Effectively, the day was superb, including a three mile unintended walk.
The British Sjögren’s Syndrome Association is a "net" not an "org" or "co.uk"which might be why it was not appearing in any of my searches, or maybe they could review their metadata. Anyway, they've been found in the end and appear as good as, if not better than, the US version but perhaps it is each to their own.
There appears to be a blog facility which at the moment I cannot address as that aspect is not responding. However, a very productive and useful morning.
Last night was a bad night due to heat, as is today. Interesting. A clear subjective distinction in tiredness between that caused by Sjögren’s and that "natural" tiredness that is derived from "normal" everyday experience, which has since slipped into complete Sjögren’s exhaustion.
Friday 12th July 2013
Thursday was a zonked out day and only now have I realised I lost my sense of time. Thursday's entry has been amended to Wednesday. Thursday I did some local shopping mid afternoon and then feeling I could/should manage a short meander in Ashridge. On the way I dropped in on a friend and enjoyed Earl Grey with lemon on her lawn, ran her daughter to Tring and so came back via Ashridge where indeed I did manage a mile walk. Thursday night was getting to sleep without too much difficulty, waking this morning at 05:00 feeling "with it" and inclined to a full day at the desk. Following breakfast I felt zonked and slept in the reclining chair for an hour, gradually coming to sufficiently as to tinker at the desk and attempt some outline planning for journeys over the next month. Now, with little done, it is time for lunch.
Wednesday 11th July 2013
The topsy-turvy world of Sjögren’s. It is close to midnight on Tuesday and I am feeling bright and with it so I persevere, rather than leave writing this until the morning. Last night I went to bed in similar mood expecting to do much this morning. Insomniac sleep, so morning was tired but a sudden flash of "with it" got me into the bath where I promptly went to sleep for an hour! Energy flitted a little more encouragingly by mid morning. I ended up getting a third of my intended shopping day done and retuned home completely exhausted, spending most of the after-noon asleep in my reclining chair before preparing supper. Nonetheless, I soldier on. Many I gather also suffer severe pain from joints etc. I suppose my gout and occasionally need for painkillers fits that category, as also crippling arthritis in my right hand but these are spasmodic attacks and merely a nuisance when operative.
Tuesday 9th July 2013
Another night of insomnia but morning tiredness seeming lighter, towards expected tiredness when having experienced a bad night rather than sense of Sjögren’s tiredness. I find a lot of people stating insomnia a Sjögren’s experience whereas I, a "natural" insomniac have only experienced easy, deep sleep with Sjögren’s but waking totally unrefreshed from it.
Monday 8th July 2013
A recent email from a friend brought further to light the diversity of autoimmune problems and the fact they have been known but not widely broadcast for years. He also advised he was surrounded by friends experiencing various grades of chemotherapy, or had already succumbed to cancer, he himself having experienced a minor brush.
I may have mentioned earlier, a BBC journalist having posted on one of MacMillan's blogs that her response to being told she had cancer was: "oh another adventure to follow through". That is probably easier to say at the start, before side effects of treatment take their toll. It is also the frame of mind with which I encounter this morning.
Last night was the worst night I have had, possibly for years. Since autoimmune problems have dominated my life over the last five or six years, I have been sleeping extraordinarily well but waking unrefreshed. Last night was like one of my previous insomniac nights, I just could not get off but that I knew was due to the temperature. It was also snotiness due to hay fever. I woke this morning totally exhausted but with an extraordinary feeling of "normality"!
As I have previously recorded, reporting on Sjögren’s Syndrome is rarely objective but mostly subjective due to its individuality per person. This is a phase when I feel I have "lost" Sjögren’s and am feeling "normal", save for the tiredness, which has just caused me to drop off for an hour in the chair. My ENT troubles were entirely hay fever, understandable and easily manageable; my tiredness was not Sjögren’s tiredness but tiredness due solely to lost sleep. It seemed as if I had passed through a mist and suddenly all was clear and normal! Yet my internal thermometer is causing me to feel that 80°F is cool! I've had to turn the fan off. There is also a slight dullness of mind, which is causing me to take care if I do anything of particular import but ploughing on regardless is the only rational response.
Sunday 7th July 2013
Apparently it is touching 40°C on centre court. Ten degrees higher than in my living room. Unquestionably heat has a soporific effect but despite being totally exhausted earlier on, I find myself periodically able to stir myself. Again, fluctuations of energy and total exhaustion are completely irrational. Clearly heat has a contributory effect but Sjögren’s is the root cause.
Saturday 6th July 2013
Yesterday was definitely a hay fever. day. Coughing and sneezing (although minimal sneezing) is extraordinarily debilitating but while that may well have contributed to a reduced energy level on my waking this morning in a completely zonked out state the condition is probably more caused by Sjögren’s than hay fever.
Friday 5th July 2013
I detect one constant with Sjögren’s, discovered this morning, that is the ease with which it does a complete volte-face. Generally speaking, all went superbly well on Wednesday and I had been moving forward most positively until now.
The problem started emerging last night. I had chosen to work late until 01:30, by which time a dry tickly cough had started. Dry tickly coughs due to dryness of mouth and throat are an inevitable side effect of Sjögren’s. It made me realise how superb my ENT state had been for the last couple of months—no problems what ever. However, pollen count is very high and while I had thought I had grown out of being affected by hayfever, that change of circumstances could explain the changed regime.
I managed to sleep untroubled but woke up aware of the condition which, during the morning, slid into a nasal drip down the back of my throat. The cough is now drily created but wet in execution.
Sleep was immediate but waking at 05:18, dozing and finally getting going around 07:00, with a certain sense of getting on with things. This dissipated over breakfast and I spent the rest of the morning dozing in my reclining chair. Now, nearly lunch time I am suddenly feeling active and able to do things.
As regards Wednesday, my oncology team declared blood, lung capacity and my lungs' ability to exchange gases appropriately were as they should be under the circumstances. Further cancer treatment was likely to cause more damage than the cancer is currently causing, so there was no justification in implementing anything. Fine by me, see how things are in September. So, with a seemingly lighter step on my way to a major shopping trip in Watford, I allowed myself to be diverted into Beckenscot, which I have not visited for probably 60 years. When I will find the time and energy to edit and produce my film of that after-noon I don't know but it was a nice day out regardless.
Now, back to today and I have come over exhausted, barely with it for the tennis and feeling completely washed out. The ENT problems I think are hayfever, rather than Sjögren’s related. The problem is always knowing what assistance I want. I used a dry cough linctus and this seems to have worked right, as the cause was initially provoked by a dry tickly throat (Sjögren’s input), although it developed into a wet product caused by a nasal drip. Now seems to be settling and I should have a good night's sleep.(?)
Tuesday 2nd July 2013
Reviewing latest communications from various persons I am currently of the opinion, to quote another, "One of the difficulties is the subjective nature and how to describe the feeling, also the difficulty of being able to pinpoint what is actually happening. It seems most people including medical people have little to provide causal information for any single diagnosis."
For me, this morning is a reverse of yesterday. Short night but deep. I sometimes wonder if I would hear the smoke alarm, I seem to sleep so deeply but without any benefit gained. Following a particularly early start I have managed to footle on, with occasional half-hour naps in my reclining chair.
Monday 1st July 2013
The argument on depression raises its head again. I have BT engineers planned for later on, for upgrading my line. This entails reviewing my accumulated mess so they can work. Slept through easily to 04:30, then off again to 06:30. Business-like bath. Sense of wanting to get going. Light tiredness. Disappointed that my weight is static, understand women's concerns now! Optimistic start to a good day.
BT actually came up trumps and in fact the rest of the after-noon (he came early when I thought he might be late), despite the disappointment of Laura losing, was very productive, until tiredness set in but without any depressive symptoms. What was very interesting was a follow through from the Sjögren’s Syndrome Foundation. I had chosen not to join for their fee when so much on the web is free but the sample newsletter (The Moisture Seekers) they sent covered so many issues of immediacy and gave an intimation I may have something to contribute, made me change my mind—but their web site would not let me join. More anon.
What was particularly apposite was the expectation that depression was an integral part of Sjögren’s Syndrome. So perhaps I should discuss that at my specialist's next appointment, which unfortunately is not until October.
I was particularly interested in their dealings with "brain fog" since I have been able to differentiate between physical tiredness with tired mind and physical tiredness with very lucid mind. The intimation is that there is not any connection with Alzheimer's. This is most reassuring, since I have recognised in me what might be called cognitive impairment: poor attention and concentration, memory deficits and slowed processing speed.
Sunday 30th June 2013
Slightly disturbed night with bathroom need at 04:30 then dozing in fits to 09:15. Reasonably attentive morning with engrossing TV and desk tinkering. Interesting conversation with a friend whose own experiences seem to have paralleled mine extensively (save that he has no cancer, nor diabetes problems).Dreading chaos tomorrow with phone engineers in to upgrade but that forces me to view situation positively and do what I should have already done in tidying up!
Saturday 29th June 2013
Yesterday, a reasonably active attentiveness to Wimbledon. Bed 10:32, easily off and waking at 05:32, giving me almost 7 hours of continuous deep sleep, waking lightly tired. This opened into a certain sense of "get up and go", which has a habit of fading in and out, like a battery on its last legs. For the moment a desire and ability to "do", writing this, taking BP (blood pressure) and dealing with upgrading my Quark, which seems singularly problematical, in preparation for Wimbledon and then preparation for a BT invasion to upgrade my line and system.
Friday 28th June 2013
I am comfortable dismissing depression as contributing to what otherwise is simply tiredness of light to medium levels over the last three days. Watching Wimbledon may have encouraged a sense of tiredness when, were I working, I may have been able to push it away to some extent. Writing this at 08:30, there certainly is not the energy to physically do and over the last few days I detect a certain dullness of mind. This contrasts with what I now realise was a particular lucidity during the previous weeks.
Wednesday 26th June 2013
It is very difficult to know if depression has a part to play. Having been medically but mildly diagnosed on a previous occasion I believe I can tell the difference between that condition and general social depression, or simply mood and I do not believe even social depression plays a part. My medical notes yesterday (Tuesday) were: "Took an hr to get off (Monday night), through to 04:45. Dozing in fits to 07:30. Varying in energy proclivity. OK for shopping not for physical activity."
Bumbled with desk work but Wimbledon a good distraction, including a sleep in the reclining chair but woke in time for the Watson and Moore matches and stayed with it until near 19:30. Went shopping and decided to come out over Ashridge where I walked for half-an-hour or so and enjoyed a superb classic English summer evening. Feeling very optimistic to Wednesday being a good "with it" day. No! Such are the vagaries of Sjögren’s. Last night, just ready for bed, when I went at 23:30 having had a late meal watching a couple of dramas and slept through to 05:45, waking feeling very tired and lacking energy but not fatigue. So preoccupied with my setback from a superb evening yesterday and overall not a bad day at all I forgot my eyelash appointment for mid-morning (eyelashes have a habit of growing into the eye or under the eyelid as a result of previous shingles damage). This was partly through tiredness and slowness in getting going and compounded by my diary not bleeping me a warning as I had miss set it. Very irritating. Looks like a dozy sort of day, mostly watching Wimbledon.
Monday 24th June 2013
Took an hour getting to sleep last night, so difficult I nearly got up to work again. Then slept through to 04:45. Dozed in fits until 07:30. Mixed emotions of inclination to do, varying emphasises of ability and levels of background tiredness, finally deciding I was fit for shopping intentions and the leeches after a little sleep in the chair.
Monday 24th June 2013
Interesting day. Woke at 06:30, dozed to 07:30 then bathed, breakfasted. Reasonable "Let's get on" faded and then faced with fury at BT suddenly energised and greeting rest of day very positively. Is depression a part of the problem? Seemed a definite lack of physicality rather than mind, as I have much to get on with and a desire so to do. Major dental work possible this after-noon, to which I am not looking forward, yet perversely tying that in with shopping (free car park) so still positive of thought.
Dentist visit more reassuring than anticipated. Shopped without list but essentials remembered. Intending further afield shopping tomorrow via Amersham for blood-letting, required for meeting with oncologist next week.
Sunday 23rd June 2013
Not quite to schedule. Woke at 05:30, fit for church but then slept deeply again until too late (07:43). Comfortable in shorts and no vest but waistcoat on top with natural room temperature at 78°F. Perhaps internal thermometer has sorted itself out and I am having to adjust to failings of age, requiring a warmer clime! General background tiredness but able to enjoy, be active with desktop matters but no real physical activity.
Saturday 22nd June 2013
Suddenly I felt unable to go to the concert this evening, despite having taken an hour sleeping in the chair during the after-noon, in preparation. Otherwise a superb day, during which I felt almost normal and realised: my general coughing had stopped; apart from slight indigestion the other day my reflux problems had subsided; my internal thermometer seemed to have sorted itself out; I had managed to offload the vest I had not worn for forty odd years and wore shorts for the first time this year. I also acquired a sense of reasonable achievment, includig a minor physical endeavour to make some difference to the clutter accumulated in the kitchen.
Friday 21st June 2013
Sense of completely normal day save for general light tiredness in background and feeling now at 17:00hrs the sort of tiredness to be expected at the end of a working day. No physical energy but reasonable amount of useful footling on keyboard.
Thursday 20th June 2013
Deep long sleep through to 05:30, then took awhile coming to. Bath extraordiunarily business-like, light breakfast and then energy evaporated, then picked up. Looks possibly like a full fruitful day feeling lightly tired but otherwise almost normal. Cough gone.
Easy run through to Watford. Good walk round Costco, then Watford Mall, bought some clothes, returned Berkhamsted for Waitrose, offload and lunch. Feeling lightly tired without much energy but the sort of tiredness following a full day, it is just that I have only done a half day. Nonetheless, feeling pretty good wtih my day's achievements.
Wednesday 19th June 2013
Such is the nature of Sjögren’s that reflecting on yesterday, despite sleeping for two hours in the middle of the day, it was a pretty good day. Today's plans are unfortunately thrown out of the window. I was a little over-tired retiring last night, due to watching the end of a programme. Maybe I must over-ride my wishes on such matters and give in to my body. Awoke at 03:30. Could not get off until 06:30, then slept through to 10:00, feeling totally zonked when I then woke up. Any idea of doing anything physical is completely out of the question. Even at the desk on the PC is unlikely to achieve anything really meaningful but I will try. Therein lies some semblance of determination and perseverance!
Reviewing the last few days I should note that ENT has settled to normality, coughing has subsided (noted by the fact I'm coughing now) so easy is it to forget or not properly note when things are right. Remembering some of the posts on the Macmillan site, what I am experiencing many of them are but with the additional anguish of pain and nausea. Perversely, I am actually feeling quite well. Perhaps that is the difference between the tiredness induced by Sjögren’s and tiredness induced by cancer, cancer therapy or diabetes? Although the last does not usually cause sickness per se.
I have just come across Kat Maculay's story which is a superb demonstration of the way to handle cancer. She is absolutely correct (in my view). "My advice to anyone going through this now would be to treat the experience as an adventure. Maybe it’s the journalist in me but I was fascinated by the process of receiving chemo, meeting my nurses and chatting to other patients." She goes on to say to be open with people, let them know how you want them to handle their reationships with you and above all, carry-on living, regardless. That last can be very difficult, especially in pain or suffering intense nausea. From personal experience, if fatigue/tiredness is the problem (and so far mine is without other complications of discomfort) it is a matter of knowing oneself as to when to fight and when to say, "Okay, I'll be patient."
This page is about my experiences with Sjögren’s. The principles are thesame and Sjögren’s, Diabetes, cancers and their treatment also create similar effec ts.Perhaps when I start cancer therapy again, I may set up another page on my experiences with cancer treatment, as will be the primary cause of my problems for the duration.
My problems derive from the length of time it has taken consultants to determine what is wrong with me (two lung biopsies over two years). Surprisingly, that is encouraging, since it was clearly a slow-growing cancer, requiring more monitoring than aggressive action but what horrifies me is the stories I uncover that come from people in their twenties and thirties. I've done my three score years and ten and while the Biblical prophecy may now be described as "four score years and ten", the trauma of facing earlier departure than I might have expected is really not a crisis. I had not thought of going until it gradually dawned on me that departure was inevitable and unquestionably certain!
Perhaps, being someone who has always maintained a reasonably up-to-date Will, the reality of death has always been a scenic gauze. My various interactions with those already passed on probably helping to maintain that sense of continuity. I remember entertaining morbid thoughts some fifteen years ago when, early for an appointment with Watford hospital regarding my prostate investigation, prior to operation I was had walked up from the station and wandered the churchyard, just opposite Wasps' football ground.
We too easily forget that the churchyards remind us of the actuaries' assessments of our life assurance values!
Tuesday 18th June 2013
Today has been most interesting and in many ways my first seriously productive day for some time. Yesterday, my chaotic system made me feel eager to work at 23:00! Debated with myself about working but decided to sleep. Could not find my therapy disc from a consultant some years back treating me for pain management following an attack of shingles in my left eye. Played some light music instead and finally dropped off, waking around 05:30, feeling more tired than when I went to bed! I should perhaps have worked. I spent all day in the daze that results from mid to deep tiredness. Managed local shopping, which made me feel really exhausted.
Still too tired for physical effort (everything needs a good clean) I have been very productive at the computer, reviewing my case notes and researching the interactive sites at Macmillan and the Lymphoma Association. There is also one for Diabetes but that seems not as well developed as the other two.
Over the first two sites there is a wealth of information on such matters as tiredness, due to cancer or side effects of cancer treatment, where I have found people suffering with fatigue for these reasons, as much as I have been suffering for no real reason, in my view, unlike them. This was my one great fear of cancer treatment. Would the combined effect of treatment and my background Sjögren’s summate or exponentiate? There is, also, a cross-reference between all three sites. Fatigue/tiredness is a symptom of all conditions. I am very much a new boy and cannot find the blog now but there was a woman who, like me, had experienced one illness, diagnosed later on with several more. Hers seemed to be a far more serious a condition to tolerate then currently mine is, although mine can very easily render me far greater inconvenience than currently Its that mildness that has taken me through so far: ocular shingles; near nervous breakdown; SLE, re-diagnosed as Sjögren’s; from which has led to Non-Hodgkins lymphoma in both lungs; including ENT problems, Irritable bowel syndrome etc etc. Mercifully, for the moment, low key and manageable. It is astounding the number of people who could repeat what I have just written with many other problems.
Sunday 16th June 2013
Just discovered an entry that I may have missed previously, or have newly discovered, that dizziness can be a symptom of Sjögren’s. Unfortunately it can also be a symptom of diabetes. So, what is my light-headedness, implying a tendency to dizziness? Sjögren’s or diabetes? Such is the complications of diagnoses. I have just discovered a free downloadable book written by a sufferer at the Sjögren’s Syndrome Foundation which doesn't tell me what I don't already know and doesn't cover tiredness but which may be of help to others.
Last night, deep full sleep, waking 05:30 unrefreshed and wondering if I was not into fatigue again. Got myself going around eight for light breakfast and found energy regaining, so settled to PC work. Looks like my morning at least is going to be able to do desk work with general feeling of light to medium tiredness.
Just discovered that Sjögren’s can cause problems with the trigeminal nerve (in my case above the left eye) which i had thought was due to shingles damage and the reason I sometimes cannot wear a hat. Information at NHS site.
Also picked up on a meander a reminder that pacing oneself around one's symptoms is the ideal response. Listening to my body and paying attention to it has always been in my mind but being engrossed in life one does occasionally forget the obvious. The day ended almost normally, so something done but not as much as ought to have been achieved.
Saturday 15th June 2013
Closed yesterday in optimistic mood feeling almost back to normal. Heavy night's sleep. Out for the count until 04:30. Woke, zonked out without any energy at all. Dozed until 06:00. Managed bath and was reasonably up and going, intending to enjoy conviviality of church fête sometime during day. Sidetracked myself to watch the Trooping of the Colour which was absolutely brill and then found myself uncertain as to whether I had slipped back into a fatigue phase, or was just feeling very very tired. Have decided it is a very tired period. Judge better tomorrow. Also unable to feel warm in the room under 80°F until 21:30 when I suddenly started feeling over-warm.
Friday 14th June 2013
Good night, feeling slightly refreshed. Heavy waking, lying for half-an-hour then easily getting going with light tiredness. Thinking of curbing my "free spirit" attitude to life and perhaps formally programming a structure of two or three hour stretches, then resting for an hour or two. Breakfast and then sudden crash into complete exhaustion—tiredness not fatigue. Also feeling intensely cold despite room temperature 78°F. Beginning to pick up from where I was at the beginning of the morning, mild tiredness and ability to do desk work at 11:30.
One of the problems with Sjögren’s Syndrome is that it can masquerade as a range of other problems, which means that when one of the symptoms of other problems arise you may not realise it is another problem. Suddenly, it has dawned on me that some of my recent tiredness periods follow a meal. One of the symptoms of Type 2 diabetes. Still waiting the result of tests, which I won't know until I see the dietician on Monday. Hopefully she'll be able to clarify. Interestingly I am not experiencing any one of the other possible symptoms for diabetes!
Thursday 13th June 2013
Good night's sleep with some sense of refreshment from it (unusual). Awoke just after 05:00 wit some sense of "get up and go". Did so around 07:00/ By 08:00 sense of total exhaustion (not fatigue). Ploughed on with breakfast, slight rest in reclining chair, head occasionally feeling light but personally feeling positive and getting on with work from where I left off the previous day, fighting deep tiredness as if it were the end of the day already! Unclear as to wether recurring neck ache derives from bad posture at the keyboard. Light-headedness persists but for what reason? End of morning feeling exhausted and rested in chair watching TV part tiredness, part repeats of missed episodes and wanted programmes.
Muddled through day but felt a reasonable day’s being. Seems needing to take the day as two halves with sleep midday.
Wednesday 12th June 2013
Apart from being slowed up with breathlessness, the challenge of various things going wrong and handling them has been inspiring. Maybe there is light depression but I really don't think so. Saturday was Matthew's birthday party; Thursday I had some good shopping if not doing all I wanted; Friday was excellent, as was Sunday, Monday and yeah, I reckon a pretty continuous state of general alrightness!
Tuesday 11th June 2013
A messy day due to a late morning appointment for a fasting blood letting. A deep tiredness rather than fatigue. Complications with blood pressure erraticism, probably due to my Sjögren’s and the fact Sjögren’s can affect acid and salt balances which required other considerations for analysis. Picked up afterwards and found day, while lacking some of the energy I found yesterday, enabled a reasonably full day.
Monday 10th June 2013
BACK TO NORMAL!?
Not exactly accurate but to hell with detail. A very productive day, almost totally normal. In fact, in principle, perfectly normal, just operating at 50-60% of what I feel I should be able to do but then, that might be due to refusing to acknowledge I am 70. Many believe the Biblical three score years and ten should now read four score years and ten. So what? I'm not complaining. I am horrified at the number I have known, some of them tragically young, who are now long gone.
Sunday 9th June 2013
First time since I realised I had gone into a fatigue phase at the end of March I felt more or less normal, until lunch time when I slipped into a half-hour's sleep in my reclining chair and took another half-hour to properly come to. Not feeling quite so energetic as first thing when, waking initially at 04:00 for bathroom needs, then dozing in fits and starts until 06:50 when I managed a reasonably energetic bath and brimming with energy attended church, bought paper and descended on The Crows Nest for breakfast. Not as dryly presented a fry as last week which was superb, none the less a leisurely breakfast and a visit to friends before bubbling back home feeling I had satisfactorily dispatched ideas that depression was part of my tiredness over the previous few days. Certainly that is an aspect to bear in mind but I can look back over Thursday to today as a gradual awareness of energy stores increasingly becoming available. Countering depression cannot be completely dismissed and only the next few days can confirm.
Friday entailed a visit to the dietician (see my NHS page). While recognition that the earlier tests probably provided a false negative and the truth is I probably am registerable as a diabetic is dispiriting the meeting was in fact very positive. I was effectively listless for the afternoon but bumbled reasonably effectively. Saturday, I was feeling more energetic and spent the morning and early after-noon ploughing through a wealth of literature relating to diet and managing diabetes. Then drove to Tring for a family child's birthday celebration, energy being retained for the rest of that day. Thus I greet Sunday most positively: church, breakfast out, drop in on friends and then (not needing lunch as I had a full breakfast) watching the tail-end of The Big Question programme leading into The Sunday Politics by which time energy evaporated and I'm suddenly fighting tiredness again but that is an advance. It is tiredness with which I am dealing and that can battled with dependent upon its depth, fatigue you simply cannot fight and have to let life flow around you in a sort of semi-comatose condition.
Thursday 6th June 2013
A lovely day to carry out yesterday's plans. Save that Sjögren’s has decided not. Finishing off a drama I went to bed 11:30pm, not over late and slept through heavily until 06:00 waking in a state of complete exhaustion. Instead of preparing myself for a hectic day as I thought I had done yesterday, I have actually gone backwards. The only energy I am likely to be able to muster is local essential food shopping. It is tiredness, not fatigue, so it is fightable but to a degree, namely very local shopping... just! That is Sjögren’s!
Wednesday 5th June 2013
Last night I managed to just drag myself to bed around 10:30pm and crashed out immediately. Slept through until 06:00, took an hour to come to and realised I was only lightly tired. I decided today was a day to regenerate, re-examine last Thursday's shopping trip and possibly pick it up this Thursday. I even contemplated extending it and going initially to the Bicester centre, as it seemed like being a nice day and treat myself to a lunch out. As I write this at 09:27 my light tiredness is sliding into a medium tiredness but I remain optimistic if I use today as recuperation with just some tinkering. All currently positive... of thought at least!
Tuesday 4th June 2013
Last night was an extraordinary night. I have not suffered insomnia since Sjögren’s Syndrome was diagnosed, from which point (or somewhat before) I found insomnia had disappeared and I started sleeping easily and deeply but unfortunately waking up having gained no benefit. I usually felt as tired as when I went to bed.
Suddenly insomnia was back. My tiredness this morning was different. It was a tiredness clearly deriving from lack of sleep itself rather than lack of fortifying sleep. Yet despite this very heavy tiredness I had a sense of "I will overcome". Fortunately I had intended watching the BBC's presentation of the Queen's Thanksgiving service so, with a late start, that was the morning accounted for. I was only tinkering but I managed to get a lot done in a casual way despite feeling what I would describe as a nonSjögren’s tiredness. It will be interesting to know how I find myself tomorrow!
Monday 3rd June 2013
Any idea I had of taking a trip to Brighton for a gig are today completely out of the question. Did I do too much yesterday? I am this morning totally zonked and have to force myself to be in any manner a participant to the day and that is following a reasonable night's sleep.
Morning was most productive, leisurely with reasonable advance on the accumulated accounting backlog. Running several things at the same is not normally a problem when you are diving in and out of them regularly but when you are slowed up so you have to re-think where you were last time you looked, it becomes a little stressful and you realise how slow you are.
Lunch was my usual bowl of soup (my main meal of the day is in the evening) and I came over suddenly tired. I relaxed in my favourite chair to watch TV for awhile and fell asleep for the rest of the after-noon. Back early evening for a slight pick-up on PC admin but realised my oomph was no more and it was best to call it a day.
Sunday 2nd June 2013 Simple deep sleep through until 06:28. Usual time for alarm to sound (was not on) for church. Awoke to a mixed state of feelings. My friend, who yesterday had emailed his appreciation that in reading my experiences he was relieved to find someone who understood his own health situation, also stated that his daily procedures were very much "forced", implying he pushed himself regardless. It made me question if I gave in too easily. I do know that I can overdo things, usually through being so wrapped up in what I am doing I do not notice how time has passed and suddenly realise I'm over-exhausted. However, as I experienced initially last night, for half-an-hour for no apparent reasons, exhaustion to the point of not knowing how to lie down, or too exhausted to enable sleep, can happen for systemic reasons, not just because of physical over-tiredness.
Being Sunday, Christ's comment in Gethsemane "the spirit is willing but the flesh is weak" came to mind and in more colloquial language I told myself to shift my backside. Bathed and dressed, I was sensing I felt almost normal and was in a "let's go" mode. The sun was shining brightly and the trees were beautiful in their new summer greenery. I decided to drive to The Crows' Nest for breakfast after the 08:00 service. I had not been to church for two months and it was a pleasure walking in again.
This provoked the question, is depression attributable? Certainly tiredness over a prolonged period can cause depression but having been diagnosed with clinical depression (although lightly and short-term) I do know the difference from social or mood depression and do not think depression of any kind has made a contribution in my case, on this occasion.
Since I have stood sufficiently close to the cliff edge of a complete nervous breakdown, as to have a reasonable insight and self-knowledge of my mental state, I was reasonably sure that all I was experiencing was further confirmation I was emerging from a Sjögren’s Syndrome induced period of fatigue, which on this occasion appeared to have lasted just over two months. I understand these periods can be shorter or considerably longer. There is no rhyme or reason to them. It is simply one's autoimmune system being up the creek.
Chatting with someone in church, I learned his wife was missing as she was feeling particularly tired. In her case it is due to problems with her kidneys. You never know how stoney is someone else's path to that momentary meeting with you.
So, following a choice of paper I headed off to The Crows' Nest, where I was placed on the indoor verandah, with a view across the Aylesbury Vale. It was the sort of day when God seemed in His heaven (despite us!) and all was well with the world. I decided to return via Ashridge where I stopped for awhile with a view of Whipsnade's Lion (carved into the chalk hill across the valley) and contemplated a walk in the woods. I declined, on the grounds that would probably over-tire me and I would not get anything down today. I regretted losing the advantage of the sun but felt I had lost so much time doing nothing but lying around for two months that I really should grab the moment to be productive.
I was right. I began to feel exhausted as I climbed the stairs and sank into my reclining chair, where I slept for an hour or so. The feelings I had been gradually accumulating over the previous three or four days were, that I had regained my battery but that it needed a trickle charge, not a sudden burst, charging rate. I could still only manage half a day's output. Let's see how the rest of today goes!
What I have not mentioned so far is that over the last three of four days my right hand has been showing signs of arthritis, lasting for just a few hours and the gout that suddenly appeared in my left toe has slipped away. These are some of the side vagaries of Sjögren’s Syndrome.
As for the rest of my day, tinkering is the best way to describe what I did but a feeling of some sense of achievement wasn't kidding myself too greatly. My review is that I'm functioning reasonably normally but at a half-day only capacity.
Saturday 1st June 2013
Erratic night's sleep. One aspect of current tiredness/fatigue, although I think it is more accurately tiredness, is the lucidity of mind. Normally over the last two months I have felt very dull-witted, assumed to be due to tiredness. In fact, since Thursday, when I realised my sense of "being normal" was somewhat exaggerated, I could describe my condition as not being fatigue but varying grades of tiredness, yet with a sense of energy and lucidity of mind. I can now describe three separate states: a desire and a limited ability to do; a general sense of all over tiredness; able to think with clarity. Maybe it is a matter of phasing: I should duck out after two or three hours, resting a similar amount of time and then having a go again. I'll try that out today.
Interesting response. A friend emailed he had experienced exactly as described above and commented "...it is good to know someone understands..." which of course is the purpose of opening myself up for anyone else in need of understanding support. One particular comment he made was that he "...felt damn awful and everything I do is forced." That is find is the problem: to what extent should one force or accept. Too easily I find if I force myself I overload and go backwards.
Today seems to confirm I have only moved on as to have half a day's energy for actually doing anything. The rest of the day is simply existing.
Friday 31st May 2013
Slight insomnia (used to be the bane of my life until Sjögren’s caused me to sleep deeply but without any beneficial effect) but finally got off and woke at six, realising that my energy had faded somewhat and the idea of continuing with yesterday's shopping was no longer practicable. Apart from Waitrose necessities I decided Friday would be a "tidying up gently", mostly digital work. The reason being that gout was persisting but not sufficiently to want painkillers and my thighs and back were stiffening up, causing me to feel slightly doddery. Arthritic rheumatism is a trait of Sjögren’s, hence Sjögren’s easily being missed as a diagnosis, as mine was originally. Hemel's diagnosis had been SLE (Systemic Lupus Erythematosus), see my NHS page for details.
Now I contemplate a mundane day of general tiredness and inadequacy and look to next week for continuing a more enthusiastic shopping encounter. In the mean time ENT seem almost normal, just a slight summer catarrhal effect; eyes continue to require artificial moistening; breathlessness seems to have reverted.
Thursday 30th May 2013
Yesterday after-noon I had perceived a tendency for gout to re-appear in my left toe. Having experienced a good sleep and waking with lighter tiredness than usual I realised that a 200mg tablet of Ibuprofen needed to be added to my regular tablets. I am wary of painkillers as you never know a day may come when you really need them to be effective and I have no wish to dull my senses in advance. Today I had a sense of managing energy and wished to be about. Bath, breakfast and dressing meant I only needed half-an-hour's lie down to be ready to roam. I really felt almost normal and planned a full day shopping: Watford, Hemel, Aylesbury.
Half way through Watford I was exhausted and headed home, feeling that if I did not over push myself I could continue on Friday. The rest of the day was spent tinkering and generally resting in front of the TV, getting lunch and an evening meal.
Wednesday 29th May 2013
Having been sensible and taken to my bed around nine pm last night, toilet needs disturbed me at 04:00 when I discovered eyes gummed up requiring an eye bath. Then dozed until 06:00 when I felt sufficiently with it as to emerge, eyes again requiring artificial tears. Dry, gritty eyes, dry, closed-up throat, causing one to be careful in eating so as not to choke are inevitable effects of Sjögren’s. Effectively since March my whole ENT system has been up the creek, causing the experience of vacillation between dry tickly throat and catarrhal mucus. Medication has been both Covonia's dry tickly cough and catarrhal cough medicine as my condition dictated. Currently I'm using the catarrhal preparation. Over the last week nasal congestion (started in March) requiring regular use of an OTC inhaler has turned to nasal drip but more like a mountain stream down the back of the throat. Over the last two or three days that has settled to the effect of a cold and suddenly my ENT situation has become reasonably livable, just like having a light summer cold.
Interestingly (June 16th) I discover a torn out page (for reference for something else) from a Which? November 2012 magazine stating their tests had concluided no justification for tehir efficacy. However, as at this date (June 16th) I have for some weeks now been without any problems. ENT having settled to near normality, it could just be due to Sjögren’s erraticism!
Also since March my internal thermometer seems to have gone up the creek and I do not feel warm in any room under 78°F. Interestingly, when in hospital before I have found the wards too warm and I would guess them at over 80°F. However, in early April, when visiting my respiratory specialist I found the waiting room temperature too high and had to move into a corridor. At the beginning of the week I felt this problem had resolved but yesterday (and outside temperatures had dropped) I suddenly found myself cold again in a room of my normal temperature of 72°F.
It was the respiratory consultant who, seemingly out of the top of his head, reckoned I could have Type 2 Diabetes. As he was a specialist I decided this entered the realm of general practice and so made an appointment with my GP, with whom I felt it was overdue to chat and update him, although I assumed the specialists were keeping him up to date anyway but I thought it wise to check. Having now booked an appointment with the dietician, I have to make sure there is co-ordination, since Sjögren’s can cause an imbalance of salt and acid levels in the kidneys, so how are the blood test results being interpreted?
Starting the day, I thought, quite well, I realised yesterday's tidying up had been more in my mind than reality but nonetheless it psychologically did me good. On the other hand had I actually had as much energy as I had thought, for this morning, having got up and breakfasted, I was suddenly feeling extremely tired again.
One of my consultants described the difference as: tiredness=car with flat battery; fatigue=car without a battery at all. Until March I had thought I had experienced fatigue. March until these last few days has taught me that I do now!
For now, it will be light tidying up but not as thorough a kitchen clean as it needs and tinkering with the PC in the hope that my mind will work and achieve, even if my body really isn't up to it. Yesterday I tweeted to Mano's Daughter that there was a glimmer I might make their gig at Brighton on Monday. I thought a gentle run down and easy night over would do me the world of good. Today, I'm suddenly not so sure it is a good idea. Such can be the fluctuations of Sjögren’s. Basically, your whole damned system is simply completely up the creek and you are no longer in control of that which physically you perceive as being you or yours.
Gave myself a break after a simple lunch of soup and then fell asleep in front of the TV for about an hour. A further hour or two followed on the PC, then preparation for dinner. While that was cooking, I felt I could push myself to clean out the fridge. Nothing much but it was done and makes me feel good that it has been done, it was overdue. So, one tackles getting back to normal by grabbing encouragements but ensuring I don't abuse by over doing it. Vulnerability of going backwards I sense is not far away. Suddenly finding I had no energy was preceded by a day or two of feeling very tired, then "wham!" I simply was not functioning. Now I am beginning to re-emerge. Early days, take it easy. That, currently, is my life. My diary tells me I must commit myself with money for an old colleagues' luncheon. Not sure yet if I can take the risk. That is the problem with concerts and theatre etc, the fear of commitment and then having to write the cost off with no benefit gained. That's one of many seemingly trivial ways in which Sjögren’s Syndrome ruins your life. In my case, unfortunately, it gets much more seriously disruptive.