Living life to the fullest despite ankylosing spondylitis
8 Mar 2018 • 9 comments
Richard, 61, has been suffering with Ankylosing Spondylitis, Osteoarthritis, Type 2 Diabetes and other conditions, and despite the enourmous number of medications he has to take every day, he is trying to live his life to the fullest and encourages others to do the same.
I wanna tell you a story, I had better start at the beginning of my rapid demise.
I lost my wife to Ovarian Cancer she was 39, that was 18 years ago. Yes, it still hurts like hell.
I've had 2 Heart Attacks (4 Stents). First heart attack on 5 August 2008 at 10-40 am. The second was the middle of June 2009.
I suffer from Ankylosing Spondilitis affecting my whole body (it's like rock in a kettle building up on my joints), diagnosed in early 2002. My diagnosis of Ankylosing Spondylitis came about during an operation on my right wrist for a condition called Peritendinitis Crepitans, (inflammation of the sheath around a tendon, which was caused by friction or overuse, not by a trauma), the operation was to release the sheath from the ‘groove’ that the swollen sheath had worn in the Spondylitis. The operation itself was a complete success but the following months and indeed years of treatment for pain management have had its toll on my ‘inner self’ as well as my general health.
The first drug I was given for the A.S was called ‘Methotrexate’ which is a very potent drug, a member of the Chemotherapy family used in some Cancer treatments. This knocked my immune system for six. As a result, I would contract Thrush every 4-6 weeks for about 2 years, then a Chest infection a few times, Ear infections, severe Toothache. Then the last few years it has been Iritis, one or rarely both of my eyes would swell and get very sensitive to light (making night travel a No-No). At its worst I had 7 Injections under the top 3 or 4 layers of skin on my eyeball. No pain just irritation.
Now things have quietened down a bit, not so regular now. I take several painkillers as you can see in my ‘drug list’. I have been taking an anti Tnf drug called ‘Humira’ for several months, if your symptoms can't be controlled using painkillers or exercising and stretching, anti-tumour necrosis factor (TNF) medication may be recommended. TNF is a chemical produced by cells when tissue is inflamed. Anti-TNF medications are given by injection and work by preventing the effects of TNF, as well as reducing the inflammation in your joints caused by Ankylosing Spondylitis. Examples of anti-TNF medication include: Adalimumab: Humira and Etanercept; Embrel. Since taking this concoction of painkillers and Humira my overall pain levels have improved by around 40%, giving me a better ‘quality of health’, I still have my good days and very dark days but Hey Ho, get on and make the most of it, you only get one life? Without treatment the worst-case scenario is ‘fused back’ and in a wheel chair.
Impact on daily life
I love fishing, alas I don’t manage to go as much as I used to 16 years ago, but I do get out 3 or 4 times a year, my other passion is ‘water colour’ painting but again not as much as I used too. I’ve only painted 6 in the last 15 years. I can’t sit for long periods and paint, just a half an hour here and half an hour there, so paintings take quite a while to complete. My DIY has gone and now it’s DBS, (done by someone), I used to revel in building kitchen units or book shelves or literally anything in wood, yep bowls an’ all, but now that’s impossible.
My family and friends have accepted the ‘now’ me as the ‘norm’, they can’t or won’t remember me as the happy go lucky son of a so and so that I used to be. My life has changed immensely but you just learn to accept ‘your lot’ and make the most of the life you have. Take a leaf out of my book on life, ‘don’t let the b******ds beat you’, ‘think and stay positive’.
I have Osteoarthritis in my hands, feet and my lower back, I’m Diabetic Type II, I was diagnosed 12 years ago. I had to see a dietician once a month for three months. She said you must not eat this and you can eat as much as you like of this, but you must be careful with that because......
On my last visit she said, "Well Richard, I've told you what you can and can’t or shouldn't eat or drink. I hope that it has sunk in?"
She said, 'In actual fact you can eat whatever you like.... but in moderation'.
I have stuck to that philosophy and my Hba1c has come down from 85 to 44, my blood/glucose readings are averaging between 5 and 8. All in all everything is well on track.
You'll get used to altering your fast acting insulin to suit your diet. If you have a sandwich or a cream cake? You know that a little more insulin is needed. On the other hand. If you have a lot of salads etc then you will need less insulin. In other words. If your B/S reading is high? Then more insulin. If the reading is low. Then less insulin.
43 Medications per day
High Blood Pressure,
Sleep Apnoea (I wear a mask whilst sleeping to keep my airways open).
Recently diagnosed with Micro Vascular Angina, Deep seated veins in my heart.
Carpal Tunnel Syndrome in both of my wrists. Both have been released.
List of current medication:
With all of my ailments I have to take a minimum of 43 tablets a DAY and a minimum of 6 Insulin injections a day. An extra injection on a Friday, an extra tablet on a Saturday, 4 extra tablets on a Sunday and yet another injection fortnightly on a Monday. I bloody rattle a good 'un lol...lol. I sometimes wonder. Why do I carry on?? Simple... You only get ONE 'life' and you must make the most of it. Adopt my attitude 'I won’t let the B******s beat me....
I'm sixty-one (62 in April) and have gone from a very active life as a 'Development Engineer' to I can hardly move some mornings, at my worst it can take my wife up to an hour and a half to get me out of bed, my strength has gone almost overnight...jam jars can be a right pain to open sometimes. I have a Stairlift, my Bath room is now a Wet room, I would not be without my Bed raiser, and my Electric Scooter is a God send. I take my ‘hat off’ to ALL OT’s. What a very rewarding career!
I've had an op. to 'release' my right shoulder (frozen shoulder) now I am waiting for the same op. on my left shoulder.
I could go on for a while longer, but you see my friend we all have our problems but if you can share it with someone then believe me it helps an awful lot to make the day more bearable.