This blog has been months in the making. Possibly years. It has taken me a long time to try to get my thoughts in order enough to put them down, and it is difficult to do so without it sounding like a pity party, which it absolutely is not.
Back in January this year, we spent a long weekend camping at an Aqua park, the one in the picture. I knew before we left that it would be hard for me to participate. I also knew the kids would LOVE it. We decided to purchase day passes. I initially said we should just get one session for me, but my husband talked me into a day pass, so that I could come and go as I felt able.
We all joined the first session. It was hard. I wasn’t strong enough, I was too heavy, and I struggle to do anything that requires any real strength in my wrists/hands. I struggled to even get on to the park from the water. I persevered, and kept trying. I climbed a few things, hoping to slide down, but didn’t have the grip strength and endurance to get right to the top, instead sliding down over large hard plastic handles repeatedly. (I ended up extremely covered in bruises).
When it came time for the second session, I asked my husband to stick with me for 20 mins, as I thought that was all I could manage, so that he could help me a bit. He, of course agreed. And then promptly swam with the kids to the most difficult piece of equipment to climb, that I had no chance of getting onto. I was left on my own again, and I was crushed. I asked one of my kids to hang out with me, and she actually said no. I couldn’t even get near enough to my other kids to ask them. I was surrounded by people, and felt so incredibly lonely.
I was devastated. I felt left out, unloved, and really angry that I had to be the one to get Rheumatoid Arthritis. Before RA, I would have been fine. I was strong, and fit, a very healthy body weight, had plenty of energy, and I LOVED playing with my family. We had friends there with us that weekend, and I could have happily hung out with the other mum, who didn’t want to go on the aqua park. But I was so crushed by being left out of my family, that I was terrible company for her, and I am still embarrassed by my sulky behaviour that day ( I wasn’t actually sulking, I was trying not to cry in public). When we returned home from that weekend, I bawled my eyes out.
But that day highlighted for me everything that has changed about my life. Living with RA makes me feel like I am on the edge of pretty much everything.
I am chronically ill, but not life threateningly ill. Its not the kind of illness that makes people rally around to help. I don’t fit in with the healthy people, I can’t live the same way as healthy people. But I’m not so critically ill that I can stop my life and focus solely on that either, knowing that if I do, I might get better. There is no cure for RA. Remission is not that common. I don’t feel like I belong in the group of really sick people, but nor am I a member of the healthy population.
I used to be a runner. I am still a runner. I can go to park run, and I can make it through 5km (at the moment….there were a few years where that wasn’t possible and I have worked hard to be able to do that). But I run/walk. And have accepted over several years, that this is a realistic expectation of my body, and continuous running is not. I’m still running I guess, but I am definitely only on the outer edge of that community also.
Socially, I am very much on the edge. I lost a lot of friends when I got sick, when I was in too much pain to even hold my phone for any decent conversation. Even now, when my inflammation is relatively low, energy preservation and getting enough sleep are high priorities in order to minimise my inflammation, and maximise my coping abilities. I still see people, I have a good laugh and a chat and take an interest in the people around me. But between a job, kids, and RA, I don’t have enough energy to commit to developing more to lasting friendships.
Control of my illness is always on an extremely precarious edge. Doing too much, getting stressed, not getting enough sleep, not being careful with my diet, forgetting to take even a single dose of medication, attempting to reduce dosages (due to side effects), the weather…..pretty much anything can see me in a flare, and these flares can and do include severe pain and severe fatigue. Since many of my medications are immune suppressants, I also get sick easily.
Being an active member of my family is hard too. I often feel like I live on the edge of my family. We have always been active together as a family, and now I often find myself spectating their activities, rather than participating with them. Or find myself resting while my husband works in the yard, which I used to do too. I feel like even though I am around them most of the time, I spend a lot of that time on my own. And it must be as hard for my family to get used to how I am now as it is for me. Especially my husband, who spent nearly 20 years with the old, pre RA me. He never complains. He tries to help. He just doesn’t always understand how it is to be chronically ill, and could never imagine how it must be.
I work really hard to put on a smile and get on with my life. I don’t often ask for help, and asking for help is something I have NEVER been good at. When I do ask for help, like at the aqua park, I think people forget how much I can’t do, and how much effort it is to do the things I can. I put such an incredible amount of effort into keeping everything going, and doing everything I can do, and doing it with a smile, that most people don’t realise the struggle.
I am not feeling sorry for myself, although a couple of years ago I probably did. It has taken 3 years, and quite a bit of grief, anger, frustration and sadness, to accept this illness and the way my life is and will be.
A few weeks ago, a friend observed to me that I always fill my life to maximum capacity, no matter what that capacity may be on any given day or week. I am proud of my perseverance, determination and grit. I am proud that I am still working to try to improve the strength of my body and mind, and giving everything I have available to the people around me.
I’m hoping that between my efforts to keep improving, and my efforts to share my experiences openly, I’ll get further and further from the edge, and so might other people with chronic illnesses.
Like the song lyrics by One Republic….
The only way you can know is give it all you have
And I hope that you don’t suffer but take the pain
Hope when the moment comes, you’ll say…
I, I did it all
I, I did it all
I owned every second that this world could give
I saw so many places, the things that I did
With every broken bone, I swear I lived.