Rheumatoid Arthritis and biting off more than you can chew

9
2011

 

“How could you even think you could do that?  It wasn’t very smart…”

On Sunday just gone I was feeling good. More energy.  Alive with the possibility that Xeljanz is kicking in and doing its thing.  I was in a great mood, happy, positive.  Re-carpeting my house has been an ongoing adventure since I moved here, three and a half years ago (but who’s counting?) and the holdup has been that the house needed painting before carpeting.  Makes sense, right?

It also makes sense that as my Rheumatoid Arthritis has progressed, my physical abilities have decreased accordingly. Three and a half years ago I still had two mild days a week and painting the house myself seemed like fun.  (I know, what was I thinking???).  I was about to start Enbrel and I KNEW it was going to get me to remission or darn close.  Things didn’t work out quite like that, but I painted when I could.  And sometimes when I couldn’t.  It has taken this long to get down to only one bedroom and the family room/kitchen to go.  This, to me, is pretty exciting, and definitely the home stretch!

So I decided to spend the day cleaning the skirting boards and window sills to prep them for painting.  I paced. I rested.  And I spent the following day masking taping the same areas in preparation for painting.  Tuesday my back was complaining pretty nastily, so I rested.

Wednesday I couldn’t move.  The pain in my lumbar spine was so severe I could only lie flat on my back.  Bugger.  I did too much.  Even though what I did, for a normal person, would have taken two hours maybe, and left them with no ill effects.  For me, getting down that low, into awkward positions, meant my spine shifted and compressed some nerves or something, because my left leg was mostly numb for the entire day.  Walking wasn’t really a thing, and getting to the bathroom was a herculean effort. Go me!

So I needed help. So I reached out and asked for it. It came, but with a lecture.

How could you even think you could do that?  It wasn’t very smart…

I chucked and agreed. What else do you do when someone has kindly delivered food?  And I can see how a person might look at it that way.

But understand this.  I want to participate in life. I want to achieve things for myself.  Because my abilities vary from day to day I am never quite sure what I am capable of.

So I try.

Should I spend my life on the couch assuming I can’t do something and avoid pain? It’s a valid choice to avoid activities that may cause pain.  Severe pain is not a whole lot of fun.   But it’s the ‘may’ in that sentence that causes my quandary.

“What if I fall?  Oh, but my darling, what if you fly?”

One of my favourite quotes.  I’m like that. All quotey and stuff.  Admittedly some days I want to crumple up the positive quote and stuff it down hard deep in the garbage bin, dig a six foot hole in the backyard to bury the bin in the ground and concrete over it, twice just to be sure…but mostly happy quotes help me stay positive.  To each their own.

So I try.

If I worry about whether anything will cause me more pain, I might miss out on doing things that give me joy, give me satisfaction and happiness.  Of course I have to be realistic.  Skydiving and bungee jumping are out. I get that. So is horse riding and basketball.  But cleaning the skirting boards didn’t feel painful at the time.  I had knee pads and scooted along on my butt.  Had I felt more than the usual pain while doing the work I would have stopped.  Sometimes the response is delayed, and then you just have to accept the consequences.

Who you are before you became ill is still who you are after you became ill.

I have always pushed myself to my limits.  It’s my nature.  It’s just that my limits are ever changing now, and being an optimist I sometimes over estimate my abilities.

In this case it has meant that the family room has been unusable for almost a week, all the furniture pushed into the middle of the room and it’s a total mess.  I’ve been in a lot of pain, jobs are stacking up and there has been takeout food and cheese toasties for dinner.  And a grocery run by a friend.

Now I’m getting quotes from painters to get someone else to finish the painting.  But I’m still trying to get the gardener I hired to come and finish the weeding that she did such a terrible job of.  Finding good help is not easy either!

So maybe I’ll try again.  I know there will be consequences, so I’ll be sure that the cupboards are stocked before I try again.  Or do it in even smaller chunks.   A few months ago I painted my bedroom. It took me six weeks to finish it, but I did it.  I spent more time washing brushes than painting each day, but I finished it.  And it felt like a great achievement.

I still have to be me.  I still have to try.  And sometimes, I fly.

9 COMMENTS

  1. I love this post. I am so totally the same & I love to decorate it’s always been ‘my’ job and in fact I did it as a job when I first left school & worked with my Dad who taught me all he knows. I recently helped Dad to paint my bedroom, he did all the prep and the walls and I did all the paintwork. I was silly I did it all in one day, I’m one of those that hates leaving things unfinished so I pushed until I could no longer move and I paid for it with another flare, I’d not long been out of a flare after a bad fall, so yea silly. But I’ve said to my husband before just what you said, I want to participate not sit watching the world go on without me.

    • Well done you, Gillian. I know it cost you, but the satisfaction, the living life, the retaining your identity…worth the pain. I wish you didn’t have to experience the pain. But there is more pain In living on the sidelines and watching life go by without you. Not easy choices, but be proud of yours :). Best to you.

  2. Yep, I understand. I’m coming in the house with 3 bags of groceries, and everybody inside comes running trying to take them from me. Ok, fine take them. But sometimes, I just want to do things myself. yes, I might suffer later, yes, it might mean an extra prednisone, but dangit I’m not dead yet. I have RA-Lung, and my breathing capacity in the last year has greatly diminished. I don’t know how much longer I WILL even be able to bring in groceries. But for now, while I still can, please just let me do as much for myself as my body will allow, and sometimes even more. Because it makes me feel like I’m still in the game, I don’t want to be helpless, Lord knows that day is coming. So let me do for myself while I can.

    • Melissa I’m so sorry, RA Lung is a very severe complication of this disease, and I hope your doctors can slow progression. In the meantime, I’m with you all the way. Live the most life you can, even things like bringing groceries in can feel like a privilege! You ARE still in the game, you’re never going to be helpless, because your attitude is always going to keep you in the game, no matter what your physical capabilities are. Take care of yourself and keep on being you. Xx

  3. This is one of the most difficult things to face. I look back when I was first diagnosed over 5 yrs ago and wonder how I did what I did! Working full time often praying to be able to turn the key in the door and struggling to get dressed.Now it’s different can not push myself. working part time in a desk job and challenged by this.Currently with a bout of RA pleurisy had to call in the past 2 days and probably won’t make it next week. My apartment is a mess but I do my walk almost everyday because that helps me RA related pulmonary hypertension,and diastolic heart disfunction. My DR’s are amazed at my progress and before this flare ,I wanted to up my hours!!! Dear ladies especially Melissa,there is no crime in taking care of your health first. So proud of you all!

    • Ann, you are exactly right – no crime in taking care of your health first. You are one tough cookie and I’m so proud of you for prioritising YOU and your health, by keeping up your walks and keeping on moving. I can only imagine how much pain you are in and how hard that is to keep doing. I do not have pulmonary hypertension, but I’m very familiar with the pain of pleurisy. Your regular walk will keep you alive longer and improve your quality of life and I can’t think of anything more important than that. I wish I could send the apartment fairies to clean up the mess, though ;). Best to you x

  4. I got on my bicycle and was riding so fast and carefree I got hit by a car. I love riding my bicycle but riding it so fast and with little disregard for the cars is just dumb. Yeah, I got my lecture and a bill for $100 to fix my bike. It could have been a lot worse, but darn, I do love to ride fast. Now I just look out for traffic while I am breaking free of RA.

    • Sometimes when I’m lucky enough to have a day when the pain allows me to do things I usually can’t,I will do those things even knowing I will have much greater pain the next day or more. This makes no sense to people around me, but the truth is, I just want to feel normal even if it’s just for a short time.

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