For the uninitiated I should explain that Sjogrens Syndrome (pronounced Shogruns and often abbreviated to SJS) is a degenerative, auto-immune disease and a personal friend. It attacks the glands that produce moisture (particularly those in the eyes, skin and mouth), and if you are lucky enough to make its acquaintance post menopause (as many ladies do) you have the promise of ending up like a shrivelled old prune with a hard, shriven pip at your core.
Joking aside, it is not the most entertaining condition to have. I was first diagnosed with it because I had repeated difficulty with very sore and dry eyes. The medical profession thought it was a viral conjunctivitis and my children in my class at school just thought my eyes were bleeding and watched me with scientific interest. Eventually a lovely consultant at the eye infirmary did a Schirmer’s Test which consists of putting tiny strips of blotting paper under the eyelids to soak up tears. There is a scale for how much liquid is produced and needless to say I scored zero. It was disappointing to say the least, but the upside was the consultant declared I had Sjogrens and would need lots of sterile eyedrops every day.
I won’t bore you with all the tales of related arthritis and fatigue, although I probably will. Writing, I find, often dispels the frustration of things we can do very little about. Having said that I have made some major life changes – well actually Sjogrens did that for me – and now I find myself unemployed and suddenly not at the mercy of this blessed disease. This is because I now have the time to stick to a healthy and ‘prepared from scratch’ diet, to work out and walk daily. Two stones lighter I have little difficulty with arthritis, my once painful feet give me far less grief and my energy levels have soared although, to be honest, I will never escape the fatigue and when it hits, well c’est la vie and everything stops until it passes.
I’ve added this page to the blog because I realize that much of what I write about would not be happening if it were not for Sjogrens, and I know that lots of people out there also suffer this double-edged sword. I hope I may be able to raise some smiles with some of the more bizarre experiences I have living with this condition.
26th January 2015
I have had the brace for twelve weeks now, and have had three physio appointments. We are lucky to have a little gym at home, so I have worked at the physio every day and have noted considerable improvements. The difficulty with the brace is that it tends to get tangled in the fabric of my trousers or skirts, thus causing it to become loose, or worse, to slip down my leg (if you get the hinges on the wrong spot they really hurt!). I’m still not sure whether putting off surgery is the right thing to do, but I am riding for the first time in nearly a year tomorrow and I guess that will be the final clincher. If I don’t suffer too badly and the physio has worked enough to protect my knees in the saddle, then perhaps I’ll keep going. If, however, the results are dire, with a return of limping and lurching, well, then I think I may have to bite the bullet. Part of the problem, as the knee physio said, is that even if my knee is being held in a better position, thanks to the physio, then I can still suffer severe pain and impaired mobility because of inflammation caused by the Sjogrens. It’s tricky, and there doesn’t seem to be a straight forwards answer.
The other thing I have been experiencing for a couple of months is running eyes. I still have dry eyes. Still need my drops, and yet tears pour down my face several times a day. What’s that about? Hmmm, perhaps I need to some internet diagnoses …
25th October 2014
Now very fed up , as my inelegant lurches have now thrown my back out and I am pretty immobile. Feeling pathetically sorry for myself.
23rd October 2014
Okay, knees are rubbish. Have been told that I have osteo in both and will need a replacement first in my left knee. However we are starting by trying a brace, and I am waiting for an appointment to have one fitted. I was doing Aquafit regularly, but have had to give up for a while, and Riding for the Disabled is suffering a bit because I find it too difficult to keep up with the horses. This week I only managed a measly half hour of side walking. Also I have been just generally under the weather for a while and the bladder problem that I suffer from most of the time has been really irritating. Oh well. Ring the doc now I guess and see if I have an infection. At least we could treat that so, weirdly, fingers crossed!
12th August 2014
It is strange how you get used to living with something that, at first, felt so disabling. Of course I am not working now and that means that I absorb the fatigue and, without the stress, the bouts are less frequent anyway. The most annoying of my specifically Sjogrens symptoms at present are my dry mouth (and subsequent gum disease issues) and my arthritis. As I have osteo as well it is always difficult to separate the two, but one question that has become topical at present is whether my auto immune system will attack an artificial knee. I also wonder if it is osteo or Sjogrens that is creating the inflammation in the knee around the debris that is floating there. Well, blood tests to come and referral to the orthy team. Time will tell.
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22nd February 2011
Well the catkins are on the trees and the birds are singing. All very positive except that I have already started hayfever which makes my eyes even dryer and more painful than usual. Many people with Sjogrens have what they call punctual plugs. These are tiny plugs (look like golf tees for fairies) that are inserted in the tear ducts. They stop tears draining away and help keep the surface of the eye moist. It sounds horrible, but actually it wasn’t that bad having them inserted. After six years I now have only one in the left eye, but I am not sure they did much for me.
I wouldn’t want anyone to think that SJS always ruins your life. Now that I have stopped teaching, I have been able to lose weight and exercise more, and my general fitness level is very good. My energy fund has improved, but of course this is all without the added stress of employment. For many SJS sufferers (myself included for six years) holding down a full time job when suffering from extreme fatigue and joint pain, sore eyes etc. is a real challenge, but many do it and very successfully.
Wednesday 23rd March 2011
Okay I’m ready to work – I feel a spring in my step, a lively mind and an eagerness to get out and meet new people. I would prefer not to be stuck in a 9-5 office rut, but if I have to do it, I will. I would rather be outside enjoying the elements and maintaining my new found fitness. I am 58 on Sunday and am just over two stone lighter and a hundred times fitter than I was this time last year. I have a good feeling about 2011 – bring it on!
Tuesday 3rd May 2011
May have spoken a bit soon. My back has been bad, on and off, for about three weeks now and it just reminds me how suddenly it hits. Still, no SJS, just arthritis in the neck playing up. Almost back to normal now, I think, and have only missed one or two days walking with the dogs. I am actually better on my feet and on the move than sitting down, which can be uncomfortable.
Had my six monthly blood tests with the Dr.’s surgery as my rheumatologist has been off on maternity leave. It’s a shame, because I wanted to boast about how much weight I have lost and how fit I am now. Still, the challenge is to keep like this until I see her later in the year. Not bad to have a goal.
Thursday 12th May 2011
Me and my big mouth! Been flaring for a couple of days now and feeling pretty low. Hate it when this illness drags me down like this. Hopefully it won’t last long. Have slept quite a lot and feel slightly better this morning – just have to remember not to rush out and do lots as this just aggravates and prolongs it.
What does a flare feel like? Well everyone with SJS will tell you something different as it is a very personal disease. Often for me, it starts with a muggy headache that makes my neck stiff and my eyes painful. Then it moves to my hands and arms until everywhere (all my joints) feels heavy and aching. Loud noises and bright lights bother me and everyday life becomes like a background film. Anything funny or trivial seems irritating and irrelevant and my temper becomes frayed. I also don’t want to talk – it takes too much concentration and effort, and for some unknown reason hurts my head. My fatigue level goes through the roof and I just want to stay very still, but that in itself is a problem because I can’t get comfortable. I also have flushes of heat which make my feet tingle uncomfortably.
These symptoms are reducing this morning, for which I am grateful, but, as I said, it is tempting to think it is all better and rush out to do things. That is the danger time, as it can cause a repetition or deepening of the symptoms. So …. softly, softly catchee monkey!
Wednesday 29th June 2011
I have been really well for quite a while now. I am still working out at least three times a week. This usually consists of yoga and step, pilates or bike riding. I also walk just about every day for at least an hour. Being in Cornwall this means up and down hill as level ground is at a bit of a premium here abouts. I did have to treat my nose and cheeks for roseacea, having been caught out by the sun early in the Spring, but I am now remembering to put 60 block on my face every day, and to wear my sunhat when gardening and walking. Personally, I would like it to be a bit warmer than it has been, but this week has been an improvement and it looks set to continue for a little while. The sunshine always gives my energy levels a boost (as it does everyone), and this staves off my periods of fatigue. I am maintaining my weight (would really like to lose another 6lbs) and as a lot of my clothes are a bit on the big side now, I am not too concerned. Sjogrens, what sjogrens?……
Tuesday 8th November 2011
Hmmm – been flaring for three weeks (yes, I did say three weeks) and am still not quite out of the trees. Mostly feel better, but my elbows are still stiff and aching and I am incredibly clumsy. This time I have had mouth and sinus ulcers which have been irritating but not that serious. My hands and wrists have also been very uncomfortable and the fatigue, overpowering. Still, as I say, I am feeling a bit better, but will have to be cautious as I have had a couple of days respite before during this bout. Fingers crossed I will back to normal soon.
Wednesday 18th July 2012
I have noticed something – every time I have a holiday or a big event in my life, I celebrate with a flare. Having returned from Paris 10 days ago, I have been hit with a big bout of exhaustion. Since Saturday, I have been dragging myself around like I have lead in my limbs. Also my eyes have been very sore since early in the year and I have developed a couple of small cists on my eyelids. It is weird how many little (insignificant almost) bits and pieces can go wrong with me. Still, being tied to the sofa does allow me to update my blog!
Oh, by the way, I’m fat again … still walking and doing Tai Chi and working out when I’m well, but obviously just eating tooooooo much.
10th January 2013
Filled with new resolve to workout and lose weight. I am seeing my rheumatologist tomorrow and decided to do an overview of my health since my breakdown in February 2010. Surprised to find that once on the mend at the end of 2010, I was really well through 2011, but last year was appalling. My husband commented that it just shows how your memory blurs and you put horrible things out of mind. Basically since I last blogged in the summer I seem to have flared on and off for the rest of the year. Elbows and knees seem to have given most grief, but by far the biggest enemy has been fatigue. I also realize that flares often follow a period of high activity or stress and I need to develop a better method of dealing with both of these obstacles. My current response seems to be to eat inappropriately and red wine – both strategies go straight to my stomach and hips, hence the need to workout and review my eating habits. Wish me luck.