Sometimes I lose hope. Sometimes I don’t see an end to the pain. Sometimes the road to a drug, or a combination of drugs, that can provide some relief – let alone remission – seems endless. I have walked it already, a few times over.
I have recycled the same drugs, sometimes in different combinations, sometimes exactly the same way, even though they have failed to provide relief before. Why?
Because you can’t lose hope. You have to keep trying. Because a life of endless pain is too hard to contemplate.
I received a message tonight from someone in terrible pain. She is at the end of her rope. With pain. With fatigue. With loss and grief for the life she once had. With confusion about what her true diagnosis is, and why the treatments aren’t working.
Somehow she feels it’s her fault that the drugs aren’t working, and she’s not getting better.
She is about to give up.
I have felt exactly the same way, so this story is for her. I know she will read it.
A few years ago I had no one in my life that understood what mixed connective tissue disease, inflammatory arthritis, autoimmune diseases, rheumatoid arthritis, lupus, sjogren’s, etc, etc, etc were. I didn’t fully understand it all myself.
But I knew I felt very alone, because all anyone ever heard was ‘arthritis’ and at its utterance they would either launch immediately into a story about their bung knee, or tell me to take some fish oil and all would be well.
Then I met someone who was completely different. He has Ankylosing Spondylitis. A form of inflammatory arthritis that primarily affects the spine, and may also involve peripheral joints.
When he told me he had arthritis too, I was thrilled! And yes, that does sound more than a little mean…
I also decided then and there that he was going to have to be my friend. Poor guy didn’t really have a choice. I think he realised early on it was going to be easier to just chat with me for five minutes every few weeks than try to get rid of me. He’s a practical type of guy.
And he was very kind.
At that point I was heading into my third year since diagnosis, and no treatments were working. He was diagnosed with Anklyosing Spondylitis in 1998, and so had been suffering for way longer than me. I was a newbie, he was an experienced player.
Our friendship was pretty simple. Every few weeks I’d bail him up in a corner and ask him questions. He’d share his experiences. He’d usually make me laugh. He could always find the funny side or a positive spin. We talked about which joints had been flaring, how badly. We talked about medications…we went through pretty much all the same ones eventually. We laughed about other people offering up ‘cures’ like japanese sour plums or helpful advice like ‘just take a nurofen (ibuprofen)’.
Why were these little conversations so important? Because they made all that stuff normal. These conversations reduced my disease, that had been all consuming, into a simple five minute conversation. It turned RA into small talk, thereby reducing its importance.
More importantly, I was no longer alone. I had someone to talk to who felt what I felt, so I didn’t even need to say that much. He listened. He was kind.
He was so calm and practical in the way he dealt with his disease. And he was tough. He barely talked about his arthritis…very few people even knew. He didn’t exaggerate, or maximise his pain. In fact, he minimised it. And by minimising it, he didn’t allow it to take centre stage in his life. His Ankylosing Spondylitis is just one part of his life, he never let it take control. That old saying ‘I have arthritis, but arthritis doesn’t have me’…well, he embodied it.
And I met him at a time when arthritis completely had me. I was still in denial, living in stunned disbelief that this was even happening. My marriage was in trouble, my career was dying. And I was flapping around telling everyone I met ‘but it HURTS!’
He showed me how to be stronger. He led by example. When I met him I decided I wanted to me more like him. Still working on it…
And it’s not that he has a mild case. During one of our first chats he told me he’d had nights where he’d be awake in the middle of the night, and the pain had been so bad that he didn’t know if he could go on anymore.
No further explanation necessary. You’ve either been there or you haven’t.
But it says a lot. Definatley not mild.
And we didn’t have long endless talks, discussing the minutiae of pain and suffering and side effects for hours and hours. A five minute chat every few weeks was all it took to make me feel better. And then a few weeks later I’d bail him up in a corner to talk to him again. Did I mention he’s a patient person?
He inspired me to be stronger. To stay positive. To not let disease and pain and misery take control of my life.
So. Getting to the point.
We both started biologicals at a similar time. My rheumy chose Enbrel for me.
His rheumy allowed him to choose.
If I’d been given the choice I would have gone away and googled endlessly for studies, articles, patient experiences…anything to tip the balance one way or the other. There would have been lists and charts and maybe a spreadsheet or two. I would have quite likely driven myself, and everyone around me, nuts!
He just figured a monthly shot is better than a weekly shot, cos it’s fewer needles. So he chose Simponi.
Oh. Right. Yeah. Good point!!!
Turns out he made a very good choice. Since starting Simponi in April 2013 he has had far fewer flares. They still happen, but in his words ‘they are so much less intense, I don’t even acknowledge them’.
Told you he was tough.
He has gone from pain so severe it brought him to breaking point, to now considering that his flares, and pain, are not even worth acknowledging.
I suspect he still deals with far more pain in week than most people do in a year, but pain is relative. When you’ve grown accustomed to having someone hammering nails into your wrists and twisting a screwdriver into your spine and injecting your knees with battery acid, dealing with some dull aches and pains sometimes seems pretty good, right?
Simponi did that for him.
After 15 odd years of pain – 15 years of red hot pain, locked joints, searing hot pokers twisted into various joints…his arthritis is under control. It’s not remission. But comparatively? It’s bliss.
And most would stay, after 15 years, you wouldn’t even hope anymore. But it’s been almost a year of Simponi. And life is good.
So there is hope! No matter how long you have been fighting , never lose hope. The next treatment could be ‘the one’. I’m only at 8 years. I have a long way to go before I catch up to him.
So I’m not allowed to give up hope, because he didn’t. And if it can happen for him, it can happen for me.
He gives me hope.
(And I still bail him up in a corner sometimes and ask him stupid questions.)