It’s been a while I know, but unfortunately when you throw a chronic disease into the busy life of a young family something has to give. I’m going get all my moaning & frustrations out now so that I can start a new year tomorrow with a clean slate. Sadly, this won’t put some things things right, but it will help me to look forward & focus on what is important & positive in life even when there are aspects of it that are not.
From now on you will get the real me, honest as always, unedited & writing this, & probably future posts, with a teary eye…
This past year has been a challenge for my physical & emotional health. It has been almost 6 years since I was diagnosed with Ankylosing Spondylitis. Of course those of you who understand this crippling form of arthritis will know that I suffered for years before finally being given that label. It is a life sentence, it is with you every second, of every minute, of every hour, of every day, and there is no escaping it even when you sleep (if you sleep!). I deal with constant pain, but I am damned if I’m going to let that show. My life is divided into good days, not so good days, not great days & really, can I just have a day off? days. I pride myself in perfecting the art of rarely letting the outside world see ‘it’, no matter how bad I feel. That’s possible, until the drugs stop working…
I take a biologic, a drug I inject myself. Earlier in the year my rheumatologist wanted to switch drugs. This scared me, when I had to stop taking my first biologic that year turned out to be the worst of my life. My disease took many things, things it had no right to take, things that were not ‘it’s’ to take. I tearfully begged not to go there again, & he agreed to let me stay on that drug. It was only a matter of time before the drug decided it was done with me. A short time later, in early summer, the bathroom became my best friend. I struggled to eat, everything just went straight through me. After it was quickly determined that there was no bugs to blame I stopped my second biologic in early July. My doctor promised me he wouldn’t let me turn into a cripple before he started biologic number 3 (once these drugs stop working for you, you can not take that particular one again. Your body builds up antibodies to it). I was about to go on a 3 week family vacation & was prescribed steroids to get me through the trip, as well as a diary free diet – not much fun in rural France when there is nothing but bread & cheese to eat & you’re already a starch free zone. I managed, I could still drink wine & we all had fun! It was September before my GI symptoms were sorted, then the morning stiffness really started & enter biologic number 3.
Throughout all of this I was much better equipped that 3 years ago. I had started pilates again after almost 6 years off, & rekindled a great relationship with my old pilates instructor. I although I also had a some ‘women’s problems’ to deal with that was stressful initially, they thankfully amounted to nothing. The kids went back to school & I took on the role of class parent for oldest’s year & threw myself into doing far more than I should have really. Then my knee started to hurt, just occasionally, then gradually more & more until one day I noticed that I had a solid lump protruding out of the outer side of my right knee. An X-ray suggested a dislocated fibula, which for the record is a high impact sports injury which I can confirm was not the cause. Nothing, no obvious ‘pop’, no sudden pain… zilch! Finally, after wearing a rigid full leg brace, & throwing several physicians off, including my rheumatologist who was convinced it wasn’t anything to do with him, an MRI declared it to be disease related inflammation. A big fat dose of steroids allowed the knee brace to come off, only to throw my back out. I had been walking so awkwardly for nearly 3 months, then suddenly I could walk properly. Spending christmas flat on your back when you have family staying, two excited kids & an extra dinner guest is so not fair. Hadn’t I suffered enough?
The knee still isn’t right, I’m popping steroids again, trying to keep it moving & working on getting my back to return to it’s ‘normal’ pre-knee nightmare self. However, today all my family have gone snowshoeing without me & although I hope they have had fun, I am frustrated & sad. This was something I could do & ‘it’ has taken that away too – temporarily I hope. Although I took my dog for a beautiful frosty walk in a local regional park, I was alone, hurting at every step forward & wondering how to vent my anger without taking it out on my husband or the kids.
So where do I go now? Forwards of course. Into 2016 looking up & enjoying what I do have without dwelling on what can’t have or do anymore. I will leave behind the year I faced some demons of the recent past & set the record straight, & hope that although that past still tries to bring me down, it can’t anymore. That demon may think they are smart for who they’ve become, but everything happens for a reason & the past will catch up with them eventually.
A new 365 challenge. Me, unedited, the good, the bad & the ugly. Everyday I will try to give a piece of myself to words & hopefully I will have a healthier year, both physically & emotionally.
Happy New Year!!!