Living life to the fullest despite ankylosing spondylitis
Published 8 Mar 2018
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.
Hello
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.
Ankylosing spondylitis
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’.
Osteoarthritis, Diabetes
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,
Anaemic,
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.
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Richard you are a Legend I have no idea how you function some days on so much medication but I love your take on life.. well done on the PMA as that is what keeps you going and I hope things settle down for you healthwise.
@richard0804 just making sure you've seen the comment above
@Roo1978
Thank you for your comments on my testimonial. It's encouraging that people like yourself take the time to take an interest, albeit for a very short while, that makes the day go by just a little bit quicker. I have to live with my health problems and know my limitations. Life's not that bad really, you just make the best of the cards dealt to you...lol...lol.
Again many many thanks for taking the time to respond to my testimonial. I can assure that it is true, and can be proven.
Take Care Roo1978 make sure that you look after yourself.
Kindest Regards
Richard
A Lovely message...I was enthused by your positivity
Richard,
I am not your typical patient or poster here as I have a very different outlook on life. Some of which mirrors your own.
For every negative I will find a positive so I am not going to list my ailments here because this post is about you!
I do have to go and count my medication though as I find it interesting and disturbing the amount they dispense to us all.
Keeping in mind that most GPs get commission for prescribing certain drugs, That gets me extremely upset!
27 tablets per day and those are just the ones that happened to be in my Medi sure pack, Not counting the Co-Codamol, Fentynal patches etc...
I had a thyroid storm to top it all off in January 2017 and it could’ve killed me and right at that moment? I did not care!
Yet true to form this ballsy female refused to bow down to yet another set back. Bending over isn’t an option most days anyhow as I have the same problem as you in my spine and hips. So I understand the pain that comes with that.
I am so glad to hear that you are painting but I would be happier still if you could paint some more?
I purchased a cushion of Amazon that stops my coccyx from resting on the actual chair, I suggest you buy two as it actually works better than one.
It stops most of the weight being transferred onto your spine and has been of great help to me.
Did you ever consider volunteering an art class type thing? This could be held in your own home or at a local school or old folks care home? Who would welcome you with open arms!
As for fishing the same cushions could be used if it’s flyfishing you are interested in? I was involved for quite a few years trying to save a local beauty spot called Portavoe reservoir which you will find on the Internet. There is the website portavoe.com or the Facebook page ‘the friends of Portavoe’ It is based in Donaghadee Northern Ireland and I have never fished in my life! Yet tried everything to save this magical place. I am sure you would do you the most wonderful water colour of it! If you lived over here they have wheelchair accessible jetties. You would enjoy a days fishing there!
I think your attitude to life is wonderful and long may it continue! Where there is life there is always hope and I truly hope that you will be able to reduce the amount of medication you are being prescribed? Only with the help of your GP. You will know as do I that we have to be weaned off these things but some seriously counteract others.
I am supposed to be taking maxitram, Tramadol, gabapentin, baclofen, Co-Codamol up to 4 times per day and the Co-Codamol up to 8 times per day. It’s pretty much the same with the rest of my medication.
Since my thyroid storm I have been put on carbimazole and beta-blockers.
Just another 2 to add to the ever-growing list! So I decided after January last year since I really could’ve died the day that I was going to make some major changes in my life. I had nursed my father through through cancer at home until he passed away on the 23rd of December 2010, I then nursed my mother through liver cancer until She too passed away 8/2/2015.
Recently my 93-year-old uncle who had never married also passed away in my grandparents house which was his home. After I had nursed him too, he had been ill for years too. I kept my promises and I have no idea how? Yet we find the inner strength when we dig deep enough and because we have no choice. Keeping this in mind I understand your feelings of loss and I truly am sorry that you have lost your wife as I’m sure it is as raw today as it was the very day she left you.
Life is tough there is no doubting that but you ARE a survivor so please be proud of yourself! Keep fighting and keep on at your doctor to reduce some of the medication you are on.
I am now on only one maxitram per day,
Two gabapentin, one in the morning one at night,
Co-Codamol one first thing in the morning long before I get up but no more than two others per day. Mostly two tops.
I do not use the morphine patches anymore because I was a complete zombie. I lost my personality because I was on so many drugs a day. So I had a choice did I want to be myself or a drugged up version who people barely recognised?
I choose the first option and it has taken me a year and three months to wean myself slowly off most of these drugs.
I fully understand that your life depends upon you taking some of the above forementioned medications that you are on and under no circumstances should you stop those. Unless the medical profession can come up with a solution where one tablet does two jobs? Definitely something you could be looking into as I know it has made a huge difference to my quality of life.
Don’t get me wrong because days can be very painful. When things get too much I resort to the odd tablet here and then because I simply have to. They are always available as back up; no pun intended.
You sound like a man who is very young at heart and I think that is what will get you through your struggles. You are a fighter and you can win to the best of your ability. I really hope you check out Portavoe because it is a magical place and for me it has been a healing place also.
Wishing you the very best for the future and I hope things improve for you greatly,
Kind regards and take care,
Trish xxx
