The truth about living with Rheumatoid Arthritis

Rheumatoid Arthritis and my new wheelchair

wheelchairThis is the blog post I was never going to write.  I never intended to write.  Never imagined I would need to write.

When I started this blog, from the very first post, I was imaging the post where I would declare myself in remission.  And I knew that I would get there one day, and the blog was going to document exactly how and what victories and setbacks I went through along the way.

It was more for me than anything else.  It was a place to complain, because I had no one around me who understood that a diagnosis of inflammatory arthritis could be devastating.  I was ridiculed.  I was laughed at.  I was told to stop complaining because its ‘only arthritis’.

I myself had no idea who devastating it would become, and what Mixed Connective Tissue Disease and Rheumatoid Arthritis, and a few other interlopers along the way, would do to my life.

I had no idea.

But I have learned, mostly the hard way.  I fought hard and I stubbornly refused to give in at every step.  I only asked for help when I desperately needed it (don’t do that, it’s stupid).  I was embarrassed to use a walking stick, and later Canadian crutches.  And neither of those helped very much because by the time I accepted I needed mobility assistance, I was well past crutches or a walker.   And for months, truthfully years, now I have known that I need a wheelchair.

I have struggled to walk.  I have endured immense pain.  Pain in my spine, just from standing.  Pain in my feet, my knees, my hips.  My shoulders hands and neck hurt too, so Canadian crutches were a very short lived thing.  Using them just transfers the pain from my lower body to my upper body. And they are unwieldy.  Using crutches means both hands are always full.  Shopping was ridiculous, trying to balance crutches and dig out a wallet and pay cashier took forever and was crazy difficult.  And oh the eye rolls!

I consider myself the eye roll queen now.  I am immune.  Perhaps I needed to go through that, it’s a phase in developing your armour.  And yes, I did some silly things all in the name of trying to be normal, and I deserved some of those eye rolls!  But some of those eye rollers could just take a beat, slow down a moment, imagine themselves in my shoes and ask themselves if the five minutes I slowed them down REALLY mattered that much in their day.

There’s a lesson in that for all of us I think.

So today is the day that I bought myself a wheelchair.

Another huge milestone in my life with autoimmune disease. As I said, one I have fought tooth and nail against.  I want to WALK damnit!  In fact I want to run!!! I used to run a lot, for fun!  THAT’s who I am, a runner, a fitness junkie, not a wheelchair user.

But while all of that is a totally understandable reaction, it’s really very silly.

The turning point came last year when I met my dog trainer, who is a wheelchair user, and she took one look at me and said. “What are you doing? Why are you making your life so much harder?”

She started out a part time user, but the nature of her progressive degenerative disease means she is in a chair full time now.  She can take a few steps, no more.

She had known me for all of half an hour and we stopped talking about training service dogs and started talking about acceptance.  And she let me use her chair.

Sitting in her chair, and moving with little pain was a revelation.  And it woke me up to how much unnecessary pain I was putting myself through.

At that moment I knew I would get a wheelchair. I still fought it for almost another year though.

It has taken months of soul searching.  Of long conversations with myself.  Of tears in the dark and begging a God I am completely unfamiliar with for a new drug that will put me in remission.  But the truth is, even if I went into remission tomorrow, there is too much damage done to this body for me to ever be pain free. For me to ever walk pain free.  Or stand pain free.  Running?  Just no.

I have worked through these emotions alone.  Most people don’t know how to react, or what to say.  Or they just want to get all positive about it.  Sure, there are positives.  I know the positives, that’s why I’m buying the chair.  But I wasn’t ready for the positives.  You can only get to the positives once you’ve worked through the negative emotions. That’s true of every challenge in life.  So I wrote a lot of stuff down.  My feelings.

 

I felt like I was giving in.

Getting a wheelchair isn’t giving in.  It’s fighting smarter, not harder to paraphrase the old ‘work smarter, not harder’ chestnut.

I felt like, once I started using a wheelchair, I’d use it more and more, and stop walking completely.

So what if I do?  My disease is degenerative and progressive.  Being a wheelchair user is not the end of the world.  The act of using a wheelchair will not make me deteriorate more quickly, as long as I keep doing my physical therapy in the gym.)

I felt like I had lost the battle.

Nope! The battle continues daily!  The wheelchair is a tool that helps me keep fighting the good fight.

A lot of it was less practical than that though.  Deep emotions would suddenly well up and leave me in tears or wanting to throw something.

I felt angry that I needed a wheelchair when so few people do these days.  Most people who have Rheumatoid Arthritis these days do not wind up in a wheelchair.  It IS rare…so why ME damnit!

I felt weak.  Because most people don’t need a wheelchair, am I just a sook?  Am I not strong enough?  Pain is the limiting factor.  If I could take more pain, I could walk further and wouldn’t need this wheelchair.  Am I a failure?

I felt like a fraud because I am NOT a paraplegic or quadriplegic.  I CAN walk, but not very far. I worried about people assuming I was paralysed and then reacting negatively.  We’ve all seen the ‘miracle in the liquor aisle’ meme. Or people questioning the time I spend in the gym and being unable to correlate it to the time I spend in a wheelchair.  The second allows me to do the first. And to keep my body as healthy as possible.  It’s physical therapy and its painful, but with a purpose.  And i don’t have to explain, anyway.

I felt I would be judged.  See above about not having to explain.

I felt…sad.  Beaten.  Depressed.  Like my old life was truly gone forever.

That life was gone forever a long, long time ago.  The wheelchair is just a very visible symbol of that fact.  My life as a hard drinking, bar hopping, guitar playing rock star is also over. And that’s a GOOD thing.  Something being over isn’t inherently bad, it just means I now have room to create something new.

I felt grief.  A lot of grief.  That crushing feeling in your chest where you can’t breathe properly.  Grief for a life I lost, and grief for all the things there is no way I can ever do now. Again, this has been true for a long time, the chair is just a symbol.

I felt like there was no way that I would ever find another partner. That no man would want someone in a wheelchair.  And sure, some men wouldn’t.  But this wheelchair means I’ll be able to get out places and actually meet people, rather than lying on my couch at home.  It’s quite difficult to meet people if you never leave the house.  Quite the trick.  And I am totally cool enough to pull of this wheelchair. In fact, it might just make me cooler.  It’s an attention grabber. A conversation starter.

Also, if I remain single for the rest of my life, that’s OK.  I have loved and lost, and it is better than to never have loved at all.  I get lonely sometimes, but for me, its love or nothing.  And love wouldn’t even SEE this wheelchair.

I felt like I had fought hard, suffered enough, and didn’t deserve this.

Like being in a wheelchair is that bad?  It’s not you know.  It’s a big change.  It’s hard to accept.  But now that the decision is made and I’m riding around my house in this beautiful piece of machinery, I am marveling at how easily it glides down the tiled hallway, and how much less my back and hips and knees hurt with no weight on them.

And now that I’ve realised a few upsides, here’s a few more:

Eventually I’ll learn how to do wheelies in this thing. Yep, I’ve seen it done. This is a sports chair, it can do tricks, maaaaaan!  I’ll be jumping curbs before you know it!

I can ‘accidentally’ run over some dickhead’s feet if they piss me off.  Haha..just kidding. I would never do that. But it’s a funny mental image.  I have this mean streak, but I keep it well within the realms of fantasy.

Some people will be much nicer to me just because I’m in a wheelchair, offer to help automatically. I’ve heard people talk about this, some find it offensive.  I haven’t experienced it, so I don’t know. But nice is nice and if people mean well and offer help, that seems like a good thing.

 

My RA has never been even close to being controlled.  Ironically Xeljanz is starting to take effect.  Even so, I can’t walk more than 150metres without intense pain and wishing I hadn’t tried.  But I can still do a lot of things on my feet.  The wheelchair is a part time thing, means to an end, a tool to help me live better. It is exactly  like my car.  It allows me to travel outside of my house and immediate radius.  It is no more and no less.  It doesn’t change ME one iota.

So now I’m sitting here at my desk, writing the post I never intended to write, in my wheelchair.  And I’m comfortable. And I have zoomed off to the kitchen several times, and it was easy.  It didn’t hurt.  On tiled floor, this thing just glides with next to no effort.  And once I get my powered attachment (currently being shipped), I’m going to be able to cover all kinds of terrain, and up to 20kms on one charge. There will be no stopping me!  I will have adventures that I haven’t even been able to contemplate for years.

And, quite possibly, I’ll look back and wish I’d done this years ago.

Rheumatoid arthritis and Xeljanz after seven weeks

It has been 7 weeks on Xeljanz now, with a break of 5 days thanks to a brush with mild pneumonia.  Long enough so that I have felt some benefit, in both pain and in energy levels and I’m sure it’s not coincidence.  I have days with considerably less fatigue, especially combined with being able to sleep more than four hours a night, thanks to Valium.

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Rheumatoid Arthritis and biting off more than you can chew

 

“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?

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Microvascular Coronary Disease and Rheumatoid Arthritis and Mixed Connective Tissue Disease

Four months has gone by and the day before yesterday it was time to catch up with my cardiologist.  Seems I didn’t write about my first appointment.  He took a thorough history, ran a treadmill stress test and examined my heart via ultrasound as I recovered.  He had to abandon the stress test early, because my blood pressure spiked too high.  I also became very breathless and was slow to recover.  I have noticed that I can’t exercise to the same level that I used to, not from a joint pain perspective, but a lack of fitness.

There were no dangerous abnormalities, just some stark indicators of heart disease.  I have an exaggerated blood pressure response to exercise, which is a significant indicator of cardiac mortality.  He was quick to point out that my heart is working fine right now, but getting my blood pressure lower and keeping it there is my most important health priority.

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Rheumatoid Arthritis, Mixed Connective Tissue Disease and good advice

Advice…good advice.  Unsolicited, well intentioned, good advice.  When you’re chronically ill, you get a lot of good advice.  Most people mean well, and want to help. But sometimes people just cannot accept that some diseases are, in fact, incurable.  And sometimes people get sick, even if they’ve done everything ‘right’.

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