by Jackie Aitchison on Wednesday, 20 April 2011 at 19:57
In the begining....while a teenager had lots of aches and pains so back and forth to doc, "growing pains" was the diagnosis.Continued having constant pain in spine (mainly) doc after doc could find nothing wrong, until they basically said it was all in my head. Eventually diagnosed with Ankylosing Spodylitis as my GP belived there was a problem so kept sending me to different hospitals, different specialists. By this time,however, there was severe damage and fusion in spine which was why it was spotted on the x-ray.I was told they had not been looking for AS as it a mans problem!!! This was early 70's.
By this time I was married and in my early 20's. One of the things I was told at this time was that my spine was not strong enough to carry children. For next few years continued taking painkillers, had several stays in hospitals with major flare ups. At that time we had a Rheumatology hospital, the consultant there reviewed my drugs and expressed his concern and disgust that a)I had never been referred to them before, and b) that I had never been on anti inflammatory meds.These were prescribed and the pain was managed much better, but I had spent time in hospital, which probably could have been avoided.
Next major event was one New Years eve, I decided I was not going to drink as we were simply going round the neighbours in the wee village we lived in at this time, I slipped on the ice, was carried home by 2 drunk men but one was a fireman so knew how to carry me safely, next morning my GP, who had heard all about it, called and immediately insisted I got to hospital, it turned out I had smashed a vertebrae. It was contained so no danger, so I insisted on going home, I could have bed rest easily at home rather than in hospital, though I must admit it was very painfull.I was advised by my doc if I had been drunk I would probably have been far more relaxed and would not have done as much damage............
The next milestone was one day I had a strange eye, went to see GP, nothing to be seen, but 2 nights later he appeared at the house in his car and dragged me off to the eye hospital where I ended up staying for 1 week.He had been reading up about AS and spotted the connection, I had developed iritis (uveitus), and as it had not been treated caused a few problems, in fact had to be injected into the eyeball as the drops did not work. From then on I had iritis on average 3-4 times at least every year,in one eye or the other, and a few occassions in both at the same time, just had go straight to the eye hospital as speed is so important. Only had injections twice more and 2 other stays in hospital. Got to be very good at recognising the signs so I have had a few arguments with nursing staff who would insist there was no iritis, but when I insisted on seeing the doc, it would be confirmed! In over 30 years now have only been wrong once! They should by now read the bloody notes and listen to me. I am reactive to the steroid drops, unfortunately, and it causes the pressure to build up in the eye - this can turn into glaucoma. On one occassion I actually lost sight completely in one eye for a few hours, rushed to eye hospital where the doc were running around before giving me pills to take plus injection, pressure in eye had soared. My eyes are now very sensitive to light and I have lost some vision at the periphery of 1 eye, and will most likely need surgery at some point. Go to the eye hospital every few months for check ups, but can go anytime I have a concern.
A few years later when someone pulled out a chair as I was about to sit on it, I fell heavily and the next day was in great pain. I called out the doc who insisted it was a flare up of AS,or a bad bruise... I told him it wasn't as I knew my body. I was told later that was because I was not screaming and crying when I saw my GP, however when I went to see my consultant at the Rheumatology Hospital he took one look at my face as I walked in and sent me immediately to x-ray - break no 2. To stay on the same subject the 3rd time was 5 years ago, hoovering and bent down to pick up a bit fluff and heard a crack - same old same old - pulled muscle, torn ligament etc so sent me to a physio - interesting journey crouched in the back of a taxi-you have no idea the number of potholes in Edinburgh!! Anyway the physio sent me home as they refused to touch me as I was in so much pain, and made arrangement for an x-ray. They also insisted that they would come to me till they were satisfied with my situation so I wouldn't have to travel. They also instigated further investigations which eventually confirmed I have osteoporosis. This combined with the AS means I have to be very careful of falling over etc.
In December 1999 they decided to operate on my back as I was becoming very badly bent over-this meant opening me up shoulder to bum, breaking the spine in a couple of places, placing metal rods at each side of the spine and hooks to pull everything into alignment. The op was on the Tues and they put me in plaster on the Friday - should have been longer before the plaster but it was coming up to Christmas and the holidays. That was the worst thing ever. If you can imagine, I had to sit up being held by several people, I was in huge pain and dizzy, while they placed the big padded stuff round me from under arms but going up to throat, and down to my hips. The doc ran round with injections of morphine giving me an injection whenever I wanted one. The there was the scaffolding. I was carried over and laid on this structure, with pipes running under my knees and under arms, to leave the section to be plastered clear but all the rest supported and being pulled straight-there were material bonds round my neck pulling my head into place and the same on feet so back was being pulled straight. When they finished the plastering,I carried back and sat up as they had to make sure the plaster wouldn't be too high to choke me, or too low to hurt me when sitting. Then laid down on a trolley and sent to x-ray to make sure everything was in the right place. I was put on a morphine drip. I was in hospital for a month.
Had to learn to walk, to get washed without wetting the plaster etc etc. After a few weeks had to go back to hospital as there was a black discharge, turned out because the plaster went on too early there was an infection, the took the plaster off, but I had to remain plaster less for a week and had to say on the bed and in the wee room I was in as I couldn’t be moved. No further problems, but I had 2 further changes of plaster, each one a little lighter than the last, over 10 months. Then I was fitted with leather and metal strap on body brace, which was bliss as I could take it off at night and to bathe. That was used for another year.
In the meantime a hiatus hernia and underactive thyroid were discovered. I now know this is very common, but no one has ever told me before I read in in Jessica's literature. The thyroid and AS both have as a side effect, fatigue, that explained my continual exhaustion as I described it like walking through water all the time. They also discovered that I had a lot of irritation in my stomach and colon due to the years taking anti inflammatory drugs, and I was anaemic. Again, even more fatigue. So could only take painkillers, which really don’t do it for the pain.
However a few years ago I read about a very new injection which had been used for similar conditions, Enbrel, so spoke to my rheumy consultant and I qualified to be given it so started with initially twice weekly self injection, the dosage was doubled so it could be once a week. However the anaemia was becoming a problem and I have been rushed in several time for emergency blood transfusions - the average count is 120-150 for a woman, once I was 50. My GP gets excited of my count is in 3 figures!!
Despite several endoscopies, and colonoscopies, got the camera pill to swallow. In the end there was no obvious reason for the ongoing severe anaemia, just probably to with AS....., if in doubt...
So between the painkillers, the injections, thyroid pills, hernia pills, iron pills, calcium pills, osteo pills, eye drops, I get a shopping bag full with each prescription, luckily as I have thyroid medication I don’t pay for any prescriptions!.
There has been the almost inevitable depression at times, mixed with loss of confidence caused by the way I look (now very bent over again) and the feeling of being such a nuisance – cant walk far or for long, don’t want to go out much as if in a pub e.g. need to have a seat etc, so no longer have a social life. What I do have is people visiting me – which also is difficult as I worry that I can't manage to have my home in as good a condition as I would like. But friends will realise that.
The AS was also a contributing factor to the breakdown of my marriage as it is a very difficult condition to live with for the partner, especially when young and active. It also meant my working life was very difficult due to the constant struggle, and when the association I worked for merged with another one, they moved office which meant an hours travel each way with 3 change of buses. After 3 years I simply knew I couldn't go on any longer and one day just got up and went home. My HR manager and my GP were very good and guided me through it all so I was signed off sick for a year which meant I could claim early retirement on health grounds. I remember going to see my GP with trepidation, explaining the situation to him, and all he said qyuietly when I was finished, was, I cant believe it has taken you so long to get to this point, he told me he admired my determination to work, didn't have any idea how I had managed to go on for so long. Well that was it, several boxes of tissues later we got organised. Again I think this was because we are so used to people not really getting it (AS) and having to defend ourselves from being considered lazy or taking advantage of having AS (especially when I wasn't so bent as I am now). I dont get the Old age pension as I am too young, and I could not have been able to do it with out the support of my partner an my mother.
I had major surgery last year as I was finding it more and more difficult to breathe, I was taken off Enbrel while they investigated my chest/lungs etc, but what they found was my entire stomach and part of my colon had moved through the hernia into my chest cavity and were squashing my lungs, because of the bent back once they had started to move up they got sucked right up there. They intended to do keyhole, but had to open me up hip to hip in order to pull everything back into place, then stitch my stomach to the abdomen wall so it cant do that again! Unfortunately caught MRRA infection, my veins started to object to the number of IV's and so on, also throat infection as they haad so much of a problem getting tubes into throat due to lack of movement in neck and inability to open mouth wide. I was also told they did not find the hernia to close, as they couldn't get me flat enough, so after all that still have a hiatus hernia!.
I have now put on too much weight due the long time with little exercise, initially the breathing problems, then surgery, then winter. I am hoping to get out and about which together with a healthy diet should help me shed some of the excess weight.
Another problem which has manifested itself this last year or so has been a twitch at my left eye, which became stronger and moved down my face so my mouth is now a little twisted. I was given botox, several times but did nothing to really help. My doc suggested an MRI scan to see what was going on, it was all arranged that I go in to have the scan of my head, however as the table part is very hard and flat and the part for the head is actually lower, there was no way at all I could do it, we tried every thing we could but all we succeeded in doing was causing me a lot of pain! So their thinking caps are on again. So there are problems in so many ways, anaestetic, various tests, dentist etc etc I will not be surprised if AS is blamed for this too!
I got back on Enbrel in January, however I have been dissapointed with the results, certainly not as effective as it used to be. I have also noticed my hands are very bad now, some morning completley numb,(we are thinking carpel tunnel my knees are painfull when I gave been walking, feet and ankles painfull, and sciatic pain too. My neck is very bad as I am so bent when I am out walking I have to strain to try and look up all the time.
My eyes have been much better in respect of iritis since giving up work, I put that down to less stress and probably not working at a computer all day. Also we decided to use 2 different very mild steroid drops in both eyes continually as a maintenance programme.
These are the "highlights" of the last 40 years of my life to give you an idea of some of the trials. To many to go over them all after all it has been over many years....These days the depression is more disabling, partly because just so damn tired of it all and partly because in honesty I dont have much of a life. As I said earlier, no social life in the evenings, too much involved re planning how to get here, how to get home, will I be guarantted a seat when there also not fair to make arrangements in case I have to call off at the last minute...... During the day time, my friends all work, my partner now works nights so is sleeping during the day so I have to be very quiet and any visitors too...
I go out as often as weather allows usually with my mum, as I am not too confident on my own any more. I think the affect of years of living with a chronic disease, is often thought of in terms of the affect on the body but equally important is the affect on the mind, the affect on your family, the affect on your friends on your life. Your life becomes AS, it controls every aspect of it, people treat you differently, It affects every descision you make, it has to.
I would like to add here though, that having joined various groups, and starting my own for fellow AS' Peeps has been the best thing ever. So many fabulous people out there who are a pleasure to know. From all over the world,all generous in spirit, who listen to the moaning and support, who exchange ideas and treatments and hopes and dreams, My life is much richer for these new friends even though I shall probably never meet them. But the big thing, the HUGE thing, is they all know,understand and accept everything you have to say cause they KNOW. My only regret is that I wish this had been around in the olden days when I started on this journey, it would not have been so lonely and islolated.