Rheumatoid Arthritis and my new wheelchair

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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.

13 COMMENTS

  1. I am going to say I’m happy for you because I know how much more enjoyable a trip to the zoo is in a wheelchair! It means I can see everything without being in total agony or not being able to cover all the ground. I don’t yet have my own, I might well do one day. I do use a cane everywhere I go outside the home and I will use a chair in a supermarket on a really bad day or if I’ve already walked about in town first or on a family outing that has a lot of ground to cover.
    I also went through all the above emotions about it!! The grief element crops up over and over with a chronic disease but that’s just part of adjusting time and again so although it’s hard when it happens, I know it’s normal to feel that way. Do I still have days where I’m stubborn and say I can manage without it sure, but I am getting better at realising that it’s not just my day that is easier and more pleasant when I relent and use the chair, it’s everyone else’s!!
    Enjoy your new found freedom Need and be careful practicing those wheelies!!!

    • Thanks Gillian, I can pop the front wheels up…its fun…hehehe. You’re so right about the grief element. Every change in function brings a new wave of grief, and I guess that’s normal. We all just get through it at our own pace. I have been getting in my own way for so long, by insisting on being so stubborn. I think I’m getting better though. My psych commented on how much more flexible I have become and much more open to accepting help, be it from people or devices!

      I’m looking forward to being able to take my daughter shopping and NOT having to sit on teh seats outside each store while she browses, but go inside with her. Although she did admit that she is embarassed to be with me, and it will take her time to adjust as well. That’s fair. It’s a big change, and the last thing she, as a teenager, wants is to draw attention. We’ll get through it though. One step at a time. As you said, all these emotions are normal. And all the upsides are out there waiting! Best to you Gillian.

  2. Thank you so much for sharing this. I’m in an incredibly similar situation, and your insight and self-reflection speaks to many of the worries I have about myself, my health issues, and other people’s perceptions as things get worse. I have a cane, and the funky crutches, but like you said – they help but they also hinder, transferring pain from the legs up into the arms/neck/shoulders and leaving my hands tied up. The thought of getting a wheelchair leaves me worried that people will treat it as an attention grab, or that they will ask many questions I don’t want to answer every time I enter a store, etc. I wear a pain patch and get asked what it is, sometimes in a very specific and nosy way, a couple of times a day. I don’t mind talking about my illness, but I am not my illness, and that’s what it starts to feel like. I don’t often use the cane, even though it helps with pain and exhaustion, for the same reason. I guess I’m waiting for the docs to say, go get a wheelchair. But that’s never really going to happen, is it? Not for this. I can walk about the same distance, with about the same results – painful ones!

    Anyway, that went on a bit. Thank you so much for your thoughtful post. It really helps to see that this isn’t the end of the world. That my resistance is born out of things that really aren’t enough of a reason to not get a chair.

    One question, if you don’t mind. Do you still drive? How does that work? Do you just pull the chair out when you get there and off you go?

    Thank you!

    • Hi Maggie, yes at this time I still drive. I can’t drive every day, some days I’m in too much pain, or don’t have enough control of my legs to be sure I could react. But most days I can drive. I haven’t actually left the house with the chair yet. But one of the reasons I bought thiss chair is that its light and portable. It folds down to fit in my care easily and weighs 8kg. When I take it out (my next big emotional challenge) I will take it out, set it up (2 minutes) attach the power drive (don’t have that yet) and wheel away. I have a disabled parking permit, so I have the extra space to allow me to do this. Infact this part is my biggest concern – people watching a person who looks so able bodied get out a wheelchair, put it together, then get in it and ride away. I am expecting to be questioned about my need for a chair. People can be so awful. Why would I want a chair I didn’t need? and why would I spend ALL of this money if I could walk? But I’m getting ahead of myself. That hasn’t happened…its just my fear. But that’s what I will do.

      I was also waiting for my doctors to tell me its time, but they won’t. NONE of them understand how much pain I am talking about. It is only because Xeljanz is working to some degree that I am even able to use a chair. Six weeks ago I wouldn’t be able to manage sitting up in the chair. But I understand what you’re saying, because I needed my friend, who at the time was just someone I had just met to take an honest look at me and be blunt with me about how to help myself. I thank her so much for that. I needed it. It sounds like you’re at the same point, so I’m saying to you go try out a few chairs. See how it feels. Experience the freedom of motion without the excruciating pain in your lower joints. The bliss of that! It is a hard decision and transition to make, but I am so sure my life will improve with this chair, and I think yours will too. Take care of yourself, let me know how you go? All the best to you Xx

      • Thank you so much for responding. I found your blog because I went looking for exactly what you do – someone who is in a situation much like mine and dealing with it as you are. I hope you won’t mind if I hang around!

        Would you mind telling me the type of chair you ended up with, just to give me a place to start looking? I’d really appreciate it.

        I wouldn’t wish all of this on anyone, ever. But that said, it really helps to know I’m not alone. Between you and the other folks who have commented on here, I feel less isolated already. Thank you!

  3. I have been in a power wheelchair full time about 2 months now ..have RA for about 30 years now…I have had all those emotions too..you get used to your chair and start to see the positives pretty quickly, like I can now wear cute shoes again because I don’t walk anymore..lol people do treat you better when in a wheelchair but it doesn’t offend me because I want people to help with the doors( they are heavy) and I don’t want to struggle anymore..I have struggled so hard the last 30 years, I don’t want to struggle anymore ..I have the joint damage to prove that I need this chair and I deserve it…and so do you..embrace it and enjoy the less pain…

    • Thank you so much Karen. It’s so nice talking to someone who has just been through all of this, and is reaping the rewards. Thank you for your support, it really helps! I didn’t even think of cute shoes!

      I haven’t taken it outside the house yet, that will be my next challenge. But I DO love the chair. It is so comfortable and I have a whole new bucket list now, things that are actually possible. I don’t want to struggle so hard anymore either, and I finally woke up to that fact, or am waking up to it. I still feel quite emotional about it, such a mixture of feelings! Mostly positive though. I know this is one of the best things I have done for myself in the ten years that I have had RA. Less pain! The ultimate dream. Take care of yourself and enjoy your power chair. You deserve the freedom it brings!!! Best to you Xx

  4. I walked for several months with a cane and then used those mobile chairs at the grocery. As my treatment got better I came back. So I can understand the apprehension but I also know a person needs to do what we need to do.

    I am not equating the two situations, but I do applaud you for moving to a better accommodation. It takes great purpose to say enough. Blessings sister.

  5. This brings back soo many memories for me …good and bad. I went through all of the emotions you’ve mentioned and then some. Having both elbows and shoulders replaced, along with one replaced wrist and one fused wrist, I wasn’t able to maneuver my chair myself for any distance. That led to what I struggled with the most. The first time I was with my husband. We’d picked up quite a bit of stuff in the store and approached the girl at the counter. I had all the items on my lap…my purse in my hand ready to pay and she looked up..looked right through me and asked my hubby if she could help him. This happened time and time again. I was in a chair so there was something ‘wrong’ with me. I’d dealt with people not understanding what was wrong with a 2o something, relatively healthy looking young woman, for years…but now, someone pushing me around in a wheelchair seemed to translate that I also had mental disabilities. They would smile at me (sometimes ) and then speak to whoever was behind the chair. I dealt with this with humor and with anger…mostly anger but after a while I realised. ..it was just ignorance. Again, it seemed it was up to me to educate. And I did…sometimes. And sometimes I just let loose with profanity because the hurt was too great. Whatever gets you through the moment. I’m pretty sure I know the power assist option you have ordered but do you mind me asking how much it is costing? You can PM me on FB through the Swollen Joint if you’d prefer . Thanks for the humour and truth in your blog. ..I can ALWAYS relate ..and that’s a great comfort.

    • Hi Alison, I haven’t been outside my house in the wheelchair yet, and its stories like yours that make me nervous and ANGRY. Treat you as if you’re completely invisible – charming. Either ignored completely as if you don’t exist, or stared at like an object and then talked over and around…people can really suck! Makes me so angry that people treated you that way. I guess because you were young, of course it had to be a mental disability! And even if you did have a mental disability, its still terrible treatment! I will mostly likely be on my own when I go out, so people will HAVE to talk to me and take my money! I wonder how they’ll cope??? I am steeling myself for all kinds of reactions…mostly ridicule. That has been the most common reaction to me throughout this entire disease process. Ridicule. I can’t possibly be that sick, I must be making it up. So I’m sure when I run into familiar faces at the local shops that’s what I will get. You can’t POSSIBLY need that wheelchair. And they will keep talking about my supposed mental illness and attention seeking ways. (If I were doing all this for attention, its really failed horribly, hasn’t it? You’d think I would have quit by now, considering I spend 99% of my time alone!) But I digress. Clearly I still have a pretty big chip there!!! Educating is OK some days, but its hard work. And educating the same people over and over is just exhausting so I think profanity is completely fair! I’ll PM you about the power assist. Thanks for your comments.

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