My name is Merryn, I am 47 years old and now live in Toronto, Canada. I moved from South Africa to Canada when I was 28.
I was diagnosed with Ankylosing Spondylitis (AS) just over a year ago, having had “confusing” sacroiliac related pain for at least 10 years prior to diagnosis. The pain had come and gone over that time. At times I could barely walk but it would disappear leaving me believing it was just an acute problem; I must have done something wrong. The frequency and intensity increased which made it all the more confusing. I did not have a consistent medical history as I have moved around and saw different doctors with different answers to what the problem was or could be. “There is nothing I could really do about it. It was ‘normal’ .. everyone gets back pain… “right?
Fortunately my new Family Doctor was very thorough and attentive with my physical and sent me for another x-ray to initiate possible diagnosis of the cause of the pain. The x-ray showed sign of damage to my SI joint so was sent to a Rheumatologist. With no previous x-ray to compare against the initial thought was it was just an indication that I had had children. I hadn’t recalled that being there before but thought okay a fair explanation. My symptom descriptions were evidently not ‘typical’ of AS, morning stiffness improving as the day progressed (I hadn’t really thought about it that way. Was I? Sometimes I am in pain all the time so can’t move like I should ALL day?) So the initial diagnosis was that I was hypermobile. Fortunately I was sent for additional Blood Work and an MRI just to rule out that there wasn’t something else. Well, a surprise to all, there was something else- AS!!?? A name, a diagnosis, yay, what a relief to finally know… or so I thought…. Oh my, how little did I know!!!
I now see the diagnosis as a blessing and a curse. Hopefully in time the former will be my predominant thought. This past year has been the most difficult year of my life. The symptoms and pain have progressed fast and are now everywhere. My hopes and dreams for my future feel like they were squashed in an instant. No longer could I ignore this and think it would go away.
My rational thoughts and my raw feelings and experience are constantly in conflict making it emotionally draining. Not a good addition to an already fatiguing disease. Being put in a coma often feels like my only wishful escape. My inner plea to please give me a break from the pain, the mental anguish, the feeling of exhaustion and extreme effort with doing simple things. Not to mention getting through a full day of work.
There is so little understanding of this disease. I am only in the infancy stage of understanding it myself and I live with it. Trying to explain how I feel to someone else is extremely difficult. I have been so thankful for the numerous blog postings of others experiencing this. You have been able to put into words, so articulately, some explanations that I can so relate to but would never have been able to describe myself.
I thought I was a strong person with a high threshold to pain. I believed I could overcome anything if I put my mind to it. AS has me feeling beat. I can barely cope now and this is a progressive disease which defies all my logical thinking. Cause and effect make no sense. I should feel lucky that it is not terminal but that unfortunately is not providing me much relief.
I started on Humira 3 months ago and also take Celebrex, the one NSAID that has been the most tolerable with my digestive system while giving me some relief. Starting the Biologic has been a life saver and almost instantly gave me the range of motion back in my neck, which I had lost. I also feel a zest for life that I had not felt in years. I don’t feel that it has completely stopped the inflammation though as I am still experiencing pain and an achy body (like having a bad dose of flu without the nasal congestion). The pain is less severe or doesn’t dwell as long and I have had more hopeful days than ones that defeat me. But it is still spreading; my hands, shoulders, knees and feet now feel worse than my back….at times. It’s only been 3 months on Humira so maybe it will settle down, maybe it won’t?
I am terrified of my future. I cope by living one day at a time and am trying to learn and accept my limitations. (“Trying” is the operative word; I am not doing too well at it). I am ever more appreciative of being able to even do the things I can now when I can, and no longer take them for granted. Not knowing how you are going to feel one day to the next forces you to live in the moment but doesn’t work well with society’s norm of scheduling and planning a get together or activities ahead of time. How ignorant and naive was I before to say yes so freely when truly no one knows if they will or won’t be able to.
Cookie, thank you so much for initiating and providing a place where I have been able to learn from, cry with and gain optimism from others. Thank you to all of you who have been so courageous and brave to tell your stories. You, the faces of AS, have been my solace.
I have more questions than answers but am realizing that this is a monster I can’t fight alone and keeping it to myself is not doing any good.
Only when you suffer from this can you truly understand with no explanation needed!