Hi my name is Jackie, I am 60 years old, and have been diagnosed with AS now for nearly 40 years, though typically can trace the symptoms for quite a few years before then. In those days there was so much less known about this disease, and of course they still thought it was only men who got AS!
So again I followed the usual route, doctor after doctor, hospital after hospital, eventually I was given a fancy name, which my GP confirmed simply meant that there was no diagnosis as it was all in my head. Thankfully my GP at the time, knew me well enough to know I was not making it up, and kept looking for new places to send me to, by the time I went to a small hospital run by nuns, my back was almost fully fused so there was the evidence for all to see on the xrays.
Even at that stage the treatment was incomplete, I was looked after by my GP only (this was a different one as I had moved home bythis time). I was only being given NSAIDs, so when I had flares I was in ‘rather’ a lot of pain,’ it wasn’t till I had a particularly bad flare, and was referred to a Rheumatology Hospital, that I was sorted out with pain meds as well as the NSAID’s.
There was the arrival of Iritis, which also wasn’t diagnosed for some time. Then my GP having read up on AS, arrived at my house in his car and drove me to the eye hospital, where I had to have the injections into my eye as they could not dilate the pupil with the drops. My iritis continued, several flares every year, a few week long stays in hospital along the way. Both eyes have been affected and occasionally at the same time, there has been some damage to my sight as I react badly to the drops, and my eye pressure builds up very quickly. At one stage I lost my sight completely in one eye for a few hours, they discovered the pressure was through the roof, so emergency injections, and pills were needed to get the pressure down ASAP and the sight returned. That was frightening! For the last 2 years or so I have been using the eye drops continually, a very small amount daily, the iritis cells which are in my eyes have been contained by this, I am monitored annually, and can go to the eye hospital at any time I feel at all unsure of anything. Plus I am there every 3 months as I have been given botox injections round my left eye as it has developed a bad twitch for no apparent reason, so a general monitor of the iritis situation takes place then too.
I have had the steroid injections, in my hips on a few occasions, and 20 years ago I had surgery to pull my spine back into shape as I had become very bent very quickly despite all efforts to stay as straight as possible. This was not a pleasant experience, a month in hospital, with a few complications while I was there, then infection after I got out resulting in another week ‘inside’, during a 10 month period I had in total 3 different body casts fitted (neck to hip), then for the following 10 months a strap on body cast.
During the years I have also had 3 breaks in my spine, have now developed osteoporosis, along with recurring severe anaemia, underactive thyroid, stomach problems and hiatus hernia. The anaemia caused me lots of problems and after extensive tests, colonoscopies, endoscopies, and eventually a camera pill, there was no specific reason for the extreme blood loss, it is put down to a side effect of long term AS. I become very anaemic very fast, and the red cells become very small, ends up with a dash to hospital for an overnight stay and blood transfusions.
Last year I had started to find it very difficult to breath, after a lot of investigations, it was found that because I am so bent, my entire stomach and part of upper colon had managed to go through the hole into my chest cavity and were crushing my lungs. It seems the bent body kind of sucked it all up there! I had major surgery, and everything was pulled back through to their correct place, and my stomach sewed to my abdominal wall to keep it in place. They had problems with the surgery mainly because I am so bent, they couldn’t manage to locate the hiatus hernia properly to close it, so it is still there.
I had to retire early on health grounds 3 years ago, as I simply could not struggle on any longer with the travel and the stress. I was lucky as I had a supportive GP and HR department. I was guided through the process to make sure I did it properly. Once fully retired I managed to get DLA, which helps financially, even though it isn’t a huge amount of money. Who knows what the future holds with the changes coming in both the NHS and Benefits!
These days I use a walking stick to get around, I lead a very quiet life, little in the way of any social life. With no longer working all the social side has gone, as well as just interacting with others on a daily basis. It can get very lonely at times, and can be quite depressing. Most of my friends are of course still working so there are not available, so mum and I venture forth as often as we can. As walking is the only form of exercise I am allowed to take, weather permitting we will be out there.
Like many of us, I am struggling even now, with my appearance. I am very bent, I have put on a lot of weight. I compensate with the red hair (it is much redder in real life) the make up, the jewellery, the scarves, and the jazzy walking sticks, this is my way of compensating and gives me something to hide behind!! I know I should not be so concerned with outward appearance, and I am the first to say that to others, but I honestly hate it, and when I catch sight of myself, say when I am out shopping and look in a shop window, and I am not prepared so not making myself stand as straight as possible, or whatever, and I come crashing down every time. You see I can’t disguise myself from myself, and I still haven’t accepted how I look. I don’t know if I ever will, kind of late in the day now as It was over 20 years ago I was first very bent then had surgery, but even after that my body was still determined to be bent. You think you have, then see yourself, or someone makes a comment (thinking you are ok with it) about how bent you are and you giggle along with them …….
I could go on about the daily struggle to keep myself going and my home clean and tidy and so on, I could also go on about the lack of social life because of a mix of lack of self-confidence and fatigue, I could go on about the depression that comes with any chronic health problem, but I have probably gone on long enough, the only thing I would still like to mention, is the huge difference being made by the internet community and the fabulous work being done by so many people. The groups that are around for support and understanding, and bringing people together to share, make all the difference in the world. I am no longer alone, I am no longer isolated, I am no longer surrounded by people who think they understand AS, but prove time after time, they have no real clue. The groups also allow ideas to be aired, treatment to be discussed so we can all be armed with as much information as possible to be better prepared to deal with doctors and hospitals and stand up for ourselves more. Sadly the attitudes of healthcare providers can be poor, so it is good to be prepared.
I try to be useful on line and actively participate in various Groups and hope that my experiences can be of use, that my support and understanding can help someone else, especially those in the earlier stages who may need a little more information, as it can be so confusing trying to digest everything. I try to be upbeat, but at the same time there is little pint in sugar coating everything, we need to be aware of the more serious issues, perhaps not to dwell on them, but we need knowledge, all of it, to enable us to be advocates for AS.
Edinburgh, United Kingdom