RA has been a teacher. Not my favourite way to learn, I’ll admit. But I have learned a lot.
I, like many it seems, used to be a Type A, in charge, work 25 hours in a day kind of person. I had a good career, two children, both of whom are on the Austism Spectrum. And I thought I was a pretty good wife. I cooked and cleaned and generally took care of stuff. I helped out at the school, I had time to listen to my friends troubles, and I was happy to help.
And then Rheumatoid Arthritis hit me like a freight train, and left me as a little puddle of goo on the ground. The kind of thing people step in, and wince with disgust and scrape off their shoe.
Lots of people treated me that way…with disgust. Disdain. Disbelief.
They thought I was making up the degree of pain I was in. The severity of the disease. Very few bothered to educate themselves. They didn’t care enough.
That’s people. They have their own problems.
For me, my whole life changed. Much as I didn’t want it to, Rheumatoid Arthritis occupied Centre Stage. It controlled me. So I had to learn to adapt. I learned a few other things too:
- I am very, very strong.
- I don’t sweat the small stuff.
- A smile helps. Mine or someone else’s.
- I need to be realistic. Wishing things were different doesn’t help. It just saps my energy. So I work with what I’ve got, and make the best of it.
- Worrying about things I can’t change will only bring me down. I will change what can be changed, and I have to accept the rest. I have to make the best of what I have.
- I am luckier than many, many other people.
- I need to prioritise. I have to choose what’s important in every day. I make mental lists…What MUST be done. What it would be great if I could get done. And what is just going to have to damn well wait until tomorrow.
- What other people think doesn’t matter. This one was huge for me, but there is no changing other people’s opinions. Some will always thing I am a malingerer. Some will never understand. Some will always make nasty remarks. Some will always tell me their pain is worse than mine.
- Pain and happiness are NOT mutually exclusive. I have to try and do the things that I enjoy. There are some things that are now impossible. Others that I can still do, but not without pain. Others that I can do on some days, but not others. I can still enjoy these things. It’s very, very important to keep doing the things that make me happy, even if I can’t do them the same way I used to.
- Patience. I can’t do it all myself anymore, or at least not all in one day.
- How to ask for help. No wait, I’m still struggling with this…
- Who my friends are. My real friends. My real friends understand my limitations. And they still want to spend time with me. And not just when I am ‘well’. The people that make me feel guilty for cancelling at the last minute, or saying no to an invitation, or not participating in their sky diving adventure are not friends.
- I can do most things that healthy people can do. But it will take me a lot longer, and it will almost certainly hurt me a lot more.
- Doctors don’t know everything. They are not gods. They cannot fix every problem. They can offer options. The responsibility for my health is still mine. I make the final decisions.
- Accepting my limitations does NOT mean I am giving up.
- I still have a lot to offer. I am still capable of a lot of good.
- Did I mention I am very, very strong?
Ditto x17!! I could have written this and you made me smile at the positivity that shone from this post. I also smiled when I realised that my husband has ‘liked’ your FB page. Thank you 🙂 Gilly x
Thanks so much Gilly. Its people like you that keep me positive :). Thanks for being part of the blog, and all the best to you!
Well said!!! Number 11 I too have trouble with, except with the hubs…poor man. Life is so much different now. By having this disease it makes you slow down, whether you want to or not….and yes on days that you need to be full speed ahead it can make you slow down to a crawl. I wonder how many people with RA were type A personalities? or spent too much time working. Was it that we ignored the simpler things in life? You definitely have a grasp on what’s going around all of us.
I think many of us maybe ignored early signs that we were pushing too hard. I would blame (for myself) number 11 – my inabiity to ask for help – as the basic reason I became sick. I think I had a genetic susceptability, maybe there are environmental factors…but I tried to do do much, for too long, all on my own. And then one day my body said ‘no more’…and RA took hold.
I wonder how many others would be similar? Not that we can change it now 🙂
Keep working on Number 11. I tell myself that I don’t mind at all when people ask for help. If I can help, I am happy to. So people will be happy to help me if I ask. Repeat ad nauseum! good luck 🙂
A physio I know said something about all of us Type A personalities with RA.It sounds pretty common to try to do as much as possible.
I started to exercise to kill the boring time I spend with a warm compress on my dry eyes.
Your prioritizing sounds essential
So true, Annette. I find the hardest thing to do is *nothing*! Sounds like you’re the same 🙂 I guess I have to file that under ‘patience’ as well…
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