I remember suddenly not being ably to bend as far as I was used to. I had chronic back ache and saw the Chiropractor at least once a month as it gave some form of relief. It always felt like I needed to be stretched out. One day my wife was chatting to some of our friends and saying she is concerned that the Chiro doesn’t seem to be giving me enough relief. One retired nurse told her to send me to a Physiotherapist to see if I get better results there. I saw the Physio almost twice a week for over 2months.
She asked me more and more questions every time I saw her. We spoke
about the fact that my GP had diagnosed me with #JuvenileArthritis around the age of 13 (research has shown me that this was probably the start of the A.S.) and I also had Rheumatic fever when I was 17. This combined with not getting great results from the
treatments set off alarm bells for her. She told me to see my GP and get a referral to a
Rheumatologist. The first Rheumy I saw is very well known and was actually recommended by my Aunt who suffers from #Rheumatoid Arthritis.
I got the impression that the Doctor was thinking: another young person here to waste my time (that is what it felt like to me anyway). Various blood tests and x-rays where done and 2 weeks later I was called in. I was shown some growths on my sacroiliac joint, and then: I was told, very nonchalantly, that I have #AnkylosingSpondylitis or A.S. as it is commonly referred to. A pamphlet was pushed across the table and I was told to study up and take the meds on the prescription that came with the pamphlet, with no further explanation or care.
I got into my car and read the entire pamphlet, I thought I was doomed. There was no hope for me and I was going to be a burden to my, then girlfriend, now wife. I cried myself to sleep that night. Luckily I have an amazing support structure filled with beautiful family and friends who got me through the depression with a lot of love. I am also lucky enough to work for a company that had a lot of empathy for me. I had to take a step down from being Parts Manager (lots of driving and lifting heavy truck parts etc.) and go into an admin role. I got to keep my salary and therefor a roof over my head. I even get to work from my bed on the bad days.
I took the meds for a couple of months. At my 6 month and then year follow-ups I told the Doctor I felt no difference, the pain was actually getting worse. I was told to make peace, this is going to be my life. I decided to go for a second opinion. This Doctor confirmed the A.S. but seemed to care a bit more. We adjusted my meds a couple of times and found the combination that suited me best. I still had flare-ups and pain but for the most I was reasonably comfortable. I could manage and function with the levels of pain I had. It still got bad some days, so much so that my wife had to help me roll over in bed because I couldn’t move from pain, but that was maybe once a month vs once a week.
The one thing I hated was feeling sick every Monday, I took
10x Methotrexate tablets on Sunday evenings (which meant I slept through most of the side-effects) and would wake up nauseous and not feeling great on Mondays.
Last year October I decided to stop the Methotrexate and see how I feel. I didn’t have any significant change in how I was feeling, so I am still not taking it. In December I forgot to take my daily meds for a couple of days and then (knowing I have a Rheumatologist appointment in January) decided to stay off those too and see how I fare.
I am happy to report I am off all my #Chronic meds at the moment and there has not been much of change in how I feel or function, I just don’t feel sick every Monday… So, I have good days and bad days. I do still take anti-inflammatories as needed and I am happy to report almost 6 years down the line, I am off all chronic meds. I am happily married to a woman that supports me when I have the bad days and reminds me to take it easy on myself. I have great people in my life that get that I am not always able to do the things I used to do. Generally I am good and today I am having a good day! I am grateful for the good days and especially that there are more good days than bad days…