It’s RA blog week 2016 and I am starting it very unwell, having spent time in the ER with a new complication looming. My very first post is late, by 24 hours at least. Such is my life.
The Day One prompt is ‘Starting Story’ which most of us will interpret to mean our diagnosis story. But that’s not the starting story that I will be telling. Something that few people realise or understand is that life with a severe, progressive, degenerative illness is not one ‘starting story’ but many. It’s a constant reassessment of your abilities, punctuated by new diagnoses and challenges.
The trajectory, at least physically, is downward and it’s not a linear progression. It’s going about your life, then experiencing a full body mega flare that’s above and beyond your usual baseline of daily pain. So you rest and maybe you up your medications to get you through. But it doesn’t quit. And after a few weeks, months, you realise it’s not going to quit, and this is your new normal. More pain than before, and less function. More time on the couch and less time on your feet. And you go ker-chunk down to a new level, a new baseline.
Or it’s a new pain in a part of your body that never hurt before. A new joint inflamed, or kidney pain, or stomach pain that won’t go away. And one day you realise that this too is permanent now. That this pain will be there every day for the rest of your life. It’s a new diagnosis, a new disease or comorbidity. A new side effect that you have to tolerate because the medication is essential.
And you tumble off the edge of these little precipices in sudden crashes, and you don’t see them coming. You just suddenly find yourself ‘there’. And ‘there’ is much lower on the function tree than you were six months ago. And there is nothing you can do about it but accept it and adapt.
THIS is the eternal starting story that people at the pointy end of chronic disease deal with.
A starting story usually implies ‘a fresh start’ or a ‘new start’, something positive and life affirming. But these starting stories are different. Instead, with each new start you’re ascertaining what it will take away from you, what you will have to give up. It’s not being negative, its being realistic. You can’t survive so many losses if you don’t deal with them honestly. I’m not going to use positive-speak and try to convince you they are just simple challenges to overcome, and everything will always be OK. That’s rubbish. They are life changing and they will consume you if you don’t give yourself time to adjust and allow yourself to grieve.
But they do not have to destroy you. And you can live a happy and wonderful life in spite of your body’s betrayals.
My original diagnosis, more than ten years ago was Mixed Connective Tissue Disease, with Rheumatoid Arthritis as the ‘main’ disease requiring treatment. It took many years to get that diagnosis, as it does for many people. It’s a typical story.
What’s not typical is the way my disease has progressed.
No medications have had a significant effect on me, except prednisone. I have become physically disabled, and live a very limited life. All the people who were close to me left when I got sick. There is not one friend in my life who knew me before I became ill. Not one. Building a whole new support network and making new friends from a place of illness is one of the hardest starting stories I had to get through.
I take care of my two children alone, but as they are now mid-teens, that isn’t as physically demanding as when they were little. Emotionally and mentally, however, it is not easy. I have no partner, no one to lean on, no one to ask for help. If we’re out of milk and I can’t drive, well, we’re out of milk and we just go without. I have people I can call for help, but I only call when I really need it. Like when I need to go to the ER. I don’t want to lose the people I have and appreciate them all the more for each of the losses.
My starting story is every single day. Every day I have to ‘start’ again. There are no ‘good’ pain days, in the sense that every day I wake up in horrible pain. Almost all my joints are affected and every morning the pain is at least a 7, sometimes an 8. I get out of bed and slowly hobble to the kitchen for my oxycodone and thyroid medication. I make coffee and then I hobble to the couch and wait for the oxycodone to kick in.
That’s my daily starting story. It takes about two hours for me to be able to move and get into the shower. And then I need to rest again. And so on it goes. I don’t achieve much most days, and I barely keep the necessities happening. Food on table, roof over our head, life comes down to the barest of essentials. Everything takes me four or five times longer than it would take a normal person, if I can do it at all. But I keep pushing. This is MY life and I am going to live it to the fullest extent I can. I do as much as I can with what I have. I embody that ethic. I am not going to sit around feeling sorry for myself every day and if you met me you would definitely say ‘You don’t look sick’ and you would see me laughing and smiling and chronic pain would be the last thing you associate with the visual. Few people understand how much pain I am in every day, nor the challenges I face, because it’s a very hard thing to understand. I greet it all with a smile, 90% of the time. And when I can’t smile, I keep to myself.
Then there’s the other common starting story – the picking up of new and serious diagnoses. As time goes on they keep coming in an ever increasing cascade of new delights. I was diagnosed with Hashimoto’s and PCOS (Polycystic Ovarian Syndrome) long before MCTD and RA, and things were stable for many years. But for the last few years I have been picking up more and more health conditions and more and more restrictions on my life.
About a year ago I was diagnosed with Eosinophilic Esophagitis, which is an allergic disease of the esophagus. Turns out I am allergic to a lot of foods – wheat and other gluten containing grains, all dairy, nuts and seafood. If I eat these foods, my esophagus clamps shut and I can’t swallow. When food becomes impacted it is horrifically painful, and can require an emergency endoscopy to remove. So to avoid that I live on a very restricted diet. There’s not many ‘treats’ I can eat. No bread, no cheese, no chocolate, no pizza…so many of my favourite things. When you are mobility impaired and in pain, food is one of the few pleasures that remain. That has been taken away from me. Food is just pure nutrition now. All the ‘pleasure’ has been taken from it.
Another starting story was my diagnosis of small vessel disease of the brain. My medications for inflammatory arthritis caused very high blood pressure for an extended period, which lead to tiny strokes and white matter lesions in my brain and consequent neurological deficits. I take aspirin to reduce my stroke risk and two different medications to lower my blood pressure. I have balance problems, and I fall sometimes. Falling on tender, inflamed joints hurts a lot. And sometimes it’s very hard to get back up. Sometimes its impossible.
Another starting story. Losing the hearing in my left ear. I haven’t lost all my hearing, but I now wear a hearing aid. Even so, my hearing is poor. One on one, when I have the added benefit of reading people’s lips I do OK. But when there is background noise, in public, a café, a pub, I can barely hear. Not being able to hear and so contribute to a group conversation is a huge loss. Still, I don’t get out much anyway.
Another starting story. Buying myself a wheelchair, because I can’t walk far anymore. Only a few hundred metres or so before I literally cannot walk. My hips and spine feel like they lock and the pain is excruciating. I feel more like that’s an ending story, but I’m trying to be positive about it. Starting a new life with my trusty metal steed, my wheelchair. I’m learning to appreciate it. But already I am realizing that a power assist on a manual chair is not enough. I need a full power chair, I often don’t have the strength in my shoulders to push the wheelchair. And that’s hard to accept.
And the scariest starting story? Heart disease. A few months ago I was diagnosed with Coronary Microvascular Disease and Microvascular Angina. This means I have squeezing chest pain most days. But on Friday just gone I had chest pain, my heart rate was well over 120 beats per minute while I was lying down resting, and I felt breathless, dizzy and very nauseous. I called my cardiologist; he told me to go to the ER immediately. They kept me for six hours and determined that I wasn’t having a heart attack, so the news was good. But there were enough abnormalities in my blood work and chest x-ray that I know there is another starting story unfolding right now. My heart disease ‘starting’ story. I am seeing my cardiologist this week to follow up. I’ll be having a three day holter monitor, and a cardiac ultrasound. I’ve had a one day holter before. I’m pretty sure I know what he’s looking for, because we’ve discussed the possibilities before. But I will wait and see and not second guess. It will come soon enough.
A life with severe Rheumatoid Arthritis is not one starting story, its many. It’s starting again when your husband leaves. It’s starting again when you have to stop working. It’s starting again when your friends stop inviting you or they’re sick of always having to come to your house or always having to drive. It’s starting again when you can no longer run or exercise the way you used to. It’s starting again when those friendships end because you can no longer perform those activities. It’s starting again when you can no longer play guitar, or sing, or do any of the things that used to give you joy. It’s starting again with new activities, trying to find new passions, ones that your body can perform.
It’s starting again over and over, with less and less to keep starting over with. Less energy, less health, less people to support you, less ability, less you.
As each thing you love becomes relegated to your past, your starting story is about how you’re going to manage that. What adaptions you’ll make. What mobility devices you may need. What assistance services you may have to call on. And how you’re going to finance that.
That’s the blunt truth but, though each story may be a tragic chapter, it doesn’t have to be a sad story over all. The real challenge of chronic illness is finding your way to happiness through it. Obviously the more severe your disease, the more severe your pain, the harder that might be. But ultimately each starting story is YOUR story. And you get to choose, not what your body does, but how your heart and soul adapt, and how you will make your life a good one. And how you’ll make the next starting story lead somewhere good.