Rheumatoid Arthritis, MCTD and I need a Powered Wheelchair

Ok, seriously, it’s time.  I have to look into powered electric wheel chairs.  While I have some good days, and I spend those at the gym, I have some seriously shit days too.  And I have more seriously shit days than I do good days.  I just try to pretend that’s not true.

I had dog training this morning.  Group obedience training.  I had to take one crutch, because my right hip felt like it had been pulled out of it’s socket. Walking on it was very painful, the crutch helped take some of the weight off. Of course it transferred that weight through my right shoulder, which is my surgery shoulder and is my second most painful joint on any given day, so I knew an hour’s class would be the outer limit of what the crutch could help me with, anyway.

I barely made it through class.  Thank the gods for sunglasses.

My instructor and fellow classmates were sympathetic, which was good.  They all learned a little bit about invisible illness, how painful rheumatoid arthritis is and invisible disabilities.  But I struggled to control Elke, and the crutch, and follow instructions and remember what I needed to do next and reward her on cue.

It was a very painful morning, on many levels.

Physical pain, always.  Realising that I was way out of my depth, different kind of pain.  Accepting that I wasn’t managing at all, and that this is now normal for me, worst pain of all.

My private service dog instructor is taking classes there as well – extra practice with her service dog.  Service dog training is ongoing.  Dogs need constant reinforcement, and practice.  It’s not a set-and-forget.  She again came over to help me.  She took Elke’s lead, and threw my backpack onto her power chair and told me “I’m not even going to say it”.

What she means is “When are you getting the wheelchair?” which has become our standard greeting.

I bristled at first.  But it’s a ‘truth hurts’ moment.

Yes, there are days where I can walk and function well and manage for part of the day.  But today is the perfect example of a moderate day.

I can do one thing. Then I’m done.  Couch time. Mega pain. Everywhere.  And no backup.  No safety net. No helper. No carer.

That’s not a life.

Dog obedience classes are extremely important to me, so I pushed my body beyond breaking point to get there.

Because I pushed my body too hard, pain meds are not managing the pain. The levels have gotten too high.  I need to take a double dose.  Which means I’ll have extra nausea and the itches and the dizziness and dopiness and general ‘removed from reality’ feeling that higher doses of opioids gives me.  Oh and very poor reaction times.

Which means I can’t drive my car.  It’s not safe.

I need to fill some scripts, and I would like a few groceries.  I can manage without these things, it’s not ‘need’.  It’s ‘want’.  I really do want them though.

If I had a power chair, I could take the pain meds.  Lie here for an hour or two, and recuperate. And then take the chair down to the shops (1.4km away, easy footpaths), and get my scripts and groceries. And I’d get outside.  And I’d achieve what I needed to achieve.

Instead I am stuck on the couch.  I will likely have to lie here all afternoon.  Telling myself there’s no point in getting angry at my body.

But I guess there is a point in being angry at myself.  There is a way I can help myself. I have just been refusing to do it.  Get a power chair.

Most of my joints are flaring – hands, feet, knees, hips, lower back, shoulders, elbows.  The usual.  But it’s not aches, it’s much more than that.  It’s a megaflare.  The pain is intense, its stabbing and screwdrivers twisting joints apart and burning neuropathy and its mini crowbars prising my hips from my body.  It’s pretty awful.

And, I am stuck here. But I needn’t be.  I’d still be in pain, but I could get what I needed done with an electric chair.  I’d get out of here. I’d change my focus.

Obviously I can’t afford one.  So I have to investigate funding options.

More importantly than that, I need to investigate what I actually need.  To begin with, I think I need an OT (occupational therapist) for advice.  So first I have to find one of those.

Why does no one tell you how these things are done?  Why does no one tell you the procedure?  All the websites I’ve been reading seem specifically designed to make the process seem convoluted and confusing.

Aside from the process, there’s a lot to consider in terms of what device I actually need.  Who knew there were so many options?

I want a device that I can use outdoors, on footpaths but also on rough paths, and grass.  I want it to be able to get up and down kerbs, because the footpaths aren’t great here.  I also want it to have a tight turning circle, and have a small footprint, so that I can use it indoors as well.

Scooters will do the outdoor transport.  But they won’t work for indoors.  I can’t see the point in spending thousands on something that I can only use for shop runs.  Powered chairs are more versatile.  On bad days I needn’t be couch bound in the house either.  But they are far more expensive.  Just a quick google tells me they are far more than I ever considered.

So maybe hiring is an option.  Or a second hand device.  I don’t know.

Research time.  Not research that I am enjoying.  Not researching spending thousands of dollars on a great holiday or a new car (yes some of these things cost what a new car costs.  It’s insane.)

But I’m not enjoying lying here while the world passes me by either.  If I can get passed my pride, I can get more done with my life.  And be in less pain.  In theory…

And on good days I can still go to gym and do my exercises, to keep my body as strong as possible.  I still have good days.  Which will make this hard for some people to understand.  Disability is not black and white.  Abilities vary. And they vary from day to day.  But even on my best day I pass ‘the test’ for being disabled. Much as I don’t like to admit or accept it.  Ignoring it isn’t making it go away.

I’m probably making this sound like it’s OK with me.

It’s not.

It is NOT at all ok with me.  But no one seems to understand what a big deal this is. When I try to talk, people either change the subject, or just pretend I didn’t say anything. It’s the most offensive thing. Just ignore the statement.

I know what they’re doing.  We do it with the dogs.  Conditioning.  Ignore the behavior you don’t like.  They don’t like my topic of conversation, so they refuse to acknowledge it.  Pretend it didn’t happen.  They won’t ‘reward’ my ‘bad behaviour’.

And then I’ll stop talking about it, right?

Wrong.  It just makes me hate them.  And leaves me feeling more alone and isolated and ignored.

I don’t need to be positive all the time. I’d like to be.  But its just not realistic.  I have to go through emotions and I do reach out for help.  And then I can be positive again.

Right now my dog trainer is helping me navigate all of this stuff.  She is dealing with a degenerative disease that is in my opinion far worse than even the worst case of rheumatoid arthritis.  She is gradually losing control of her limbs and looking at full quadriplegia in the next few years.  She has been there, and then some.

I think karma has brought her into my life at the right time.  I needed to meet her, for many reasons.  Obviously I needed a dog trainer.  But though I didn’t know it, I also needed someone to be blunt and honest and wise with me.  Someone who cares.  But someone who’s matter of fact.  There’s no pussy-footing, or sitting around crying about it.  Just honest, cut to the chase, talk.

I need that.

I also need a friend to talk this through with, preferably with a nice glass of red.  Someone who will let talk, and let me go through the emotions, and not cut me off, ignore my words, change the subject or possibly most offensive of all, tell me its not that bad.  Someone who’ll give me some sympathy.  But that is far harder to find.  Because, gee, that sounds like fun.

If all else fails, I’ll call Dr Mike. There won’t be wine tho…

But now I’m off to google and find out what’s what.  If anyone has been down this road, with ideas, reasons for choosing the device they did, and funding options, please comment.  I’d very much appreciate your thoughts and experiences.

I have approached EnableNSW. The waiting time appears to be about a year.  I don’t know if there are other organisations. NDIS arrives in my area in July this year.  But there’s so much secrecy surrounding that, I’m not even sure if they will help.  I still feel there are others with far greater needs than me, and the NDIS is clearly underfunded and in deep trouble.  I don’t want some child or teen who needs a wheelchair full time missing out because of me.

For the record, I won’t run a GoFundMe campaign, or anything like that.  I’m not against it, but it’s just not for me personally.

I am considering creating some products to fund a power chair.  Maybe T-shirts.  Super cool ones that say things like Arthritic Chicks Rock.  Only more clever and more funny.

But I digress. Again. Time to research.  I know lots of you have been here.  I’ve taken to the whole progressive disability thing the way a brick takes to skydiving.  Without a parachute.  Tell me your stories.