Naval gazing and the power wheelchair fail

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Last night I took the power wheelchair that I hired out for a good run.  Down the footpath, and up the big hill that I used to run up, back in the good ole days.  And it was pretty awesome. The ride is rough and jarring, but the freedom to be out, moving fast with only moderate pain was quite simply breathtaking.

I had Elke on a lead tied to the chair, and she ran beside the chair happily.  She is a rangy German Shepherd and she’s built to run. Watching her run in a wide-open space (not something I’ve been able to do often) is a thing of beauty.  The freedom of movement, and her natural speed and agility are spectacular.

Usually when we walk, it’s at a snail’s pace.  It’s hard for her to walk that slow, and she does still pull on the lead sometimes.  Last night she was pushing to keep up and she loved every minute.

We both did.

But there are consequences. Aren’t there always?  Today my lumbar spine was a complete mess again.  Severe pain.  There must be nerve compression, because beyond the usual pins and needles in my feet, I lose proper feeling in them.  It’s an odd sensation, I obviously CAN feel them, I know they are there…but the sensation is altered.  Dulled.  Some parts are numb, some just feel…odd.  I feel pressure when I walk, but I can’t walk far and  I haven’t got good balance or stability.  And I get shooting sciatic nerve pain.

All from the jarring ride that the power wheelchair gives, on the concrete terrain outside.

I did feel it was worth it, but as the pain ramps up tonight, I’m not so sure now.

Today I had to take my daughter for dental x-rays, she’s going to need braces.  And I met friends for coffee.  I used my crutches, because it’s not far from the car to the café and back again, and that was all I intended to do.

The crutches worked (Canadian crutches/elbow crutches) because my upper body is OK today. Shoulders have calmed down somewhat since last week when they were excruciating, especially the right one.

This evening however, my right shoulder is hurting badly, and I can feel the fluid gathering in the joint.  My left is sore, but not as bad.  My hips are horrible, but I suspect that’s them complaining because my lumbar spine isn’t playing the game.  So the very painful consequences of twenty minutes of real freedom seem to be outweighing pleasure of the experience.

I’m flat on my back on the couch, because that is all that’s possible.

It’s a shame.

I don’t want to return the power wheelchair. I want to have the ability to get outside and take Elke for a walk. Train her, play with her, have fun.  Both of us, have fun.

But now, with my neck joining the party (referred from the shoulder, or neck pathology in its own right, I don’t know) I think the sensible thing to do is to stop using it.

It’s a very big shame.

The power wheelchair that I will ultimately get (if approved) has advanced suspension and a much softer ride.  But that chair is still six months away, minimum. There’s a story behind that, but that’s another blog post.

The irony of finally accepting I need the power chair and using it, and then realising I need a much more advanced chair, more help than that even, is not lost on me.

Still, I’m proud of myself that I have made it this far.  It has been a very hard thing for me to accept. Some people adapt to a chair very well, others do not. I am the latter kind of person.  I have tried to talk to people about my feelings about wheelchairs and the difficulties, but unless you’ve been there, you really don’t understand.  I’ve been given the most ridiculous advice, not borne of malice, but certainly ignorance and a lack of empathy.

So I have been doing a lot of naval gazing, and spending time alone, and finally reached a sort of peace with it all.  There is no changing that this is where I’m at now, physically. No, there’s no one to help me day to day, and that isn’t ever going to change.  Not ever.  The only option is a wheelchair, and people are going to continue to tell me that’s no big deal, when it is actually rather a very big deal.  Again, no desire to see through my eyes.

Part of me reaching a greater acceptance with my physical capabilities has been from the very obvious example in front of me of a person who represents everything I do NOT want to become like (again, another blog post).   A very negative, miserable human being.

And part of it has been from spending time with that old friend from my past, the one who remembers me fondly. He says in all the ways that matter, I’m still exactly the same.  He turned up at just the right time, and told me just what I needed to hear. Karma is funny that way.  I believe I’m helping him in return.  Surprisingly enough, he has a whole truckload of his own problems.  And he needs a friend who’s outside of his day to day life to help him navigate his own personal holy-crap-how-did-I-end-up-here story.

I don’t like to spend a lot of time in the past, but very rarely, it’s a good thing.  In this case only someone who knew me way back when, and who doesn’t place a whole lot of importance on my physical appearance, could have helped me see what I needed to see.

Right person, right time. For once.  And no, it’s nothing more than that.  But it’s nothing less, either.

We’ll go our separate ways again soon, having helped each other make a course correction, knowing someone out there cares.

And at the end of the hire period (two more weeks)  I’ll take the power wheelchair back, knowing I gave it a solid try.  But I won’t stop looking for solutions and ways to make my life better.

 

4 COMMENTS

  1. More hurry up and wait.It will be worth it to have a bit more freedom once you get the “good” chariot. I can understand how hard accepting you need a helping chair can be,although I only need to use a wheelchair at an airport or Zoo etc and unless a person has been in that situation they should refrain from voicing their opinion -to put it politely 🙂
    I’m glad your old friend is helping.
    Take care x

  2. Thanks Rochelle. Did you find it hard, the first time you needed that chair? I do admire people who can make the transition gracefully, but I also think its should be very easy to understand that its NOT an easy thing for some of us. Beyond the emotional, there’s the physical difficulty of managing the chair. Transporting it. If I’m sick enough and in enough pain to need the chair, just loading it into the car feels like a herculean effort. And unloading it at the other end. And finding the wheelchair accessible entries, and the elevators, and the little obstacles that can tip a chair, and..and…and! I have found people not willing to listen to those things, just get brushed away and poo-pooed. (Don’t be so negative). Usually coming from someone who has a nice, supportive partner, who manages the chair for them, puts it in the car and gets it out and helps with the transition from car to chair, and is there to push if needed, or the power assist battery runs out. And they can’t see its a bit harder when you don’t have a person there to help, to support and provide that feeling of security. And then the way people stare! Ooops..sorry, ranting again! That’s a whole other post! Thanks for your support and understanding, I really appreciate it. Best to you x

  3. Oh I skipped the bit about there is no way on earth I could manage without my partner to push the chair just sitting waiting for me,mobility scooter at the zoo though all mine to roar along on. I felt weird and like everyone was staring at me the first time and honestly every time I get pushed along but stuff them I’d be worn out before the trip even started without using it. It felt like another thing taken from me by the RA but along with the stares most people are amazingly kind and helpful. I’d say it’s a lot harder without help and for me impossible I’d have to walk and be worn out or just not go. I really don’t get how people think it is an easy transition,I bet if it was them they would be whinging the house down 🙂 Hope things are improving for you and take care x

  4. I am so glad you loved the walk. Yes, there are always consequences of having a great time, but sometimes even the bad consequences are worth it. I know the dog loved it as well. Good luck on the final approval of the advanced suspension chair. I feel good about your chances.

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