Passivation and mobility aids

Disability and illness, Medical health professionals

I’ve been thinking a lot on this whole thing that the medical health professionals talk about so much; passivation.
This notion that if I get an aid, like a wheelchair, and is able to go outside of my home and participate more in society, I will be passivated???

So, I can get out of the house = passive
Can’t get out of the house = active?

Please tell me how this makes sense?!

I have heard them, but they don’t hear me. They say I should walk a little, but their ”little” is a marathon for me.

So this is my current situation:
I asked for an electric wheelchair with a joystick and a high back that could recline (so that I could lay down and rest in order to be able to go further after). They gave me a mobility scooter and claimed it was ”better”. When I had objections, they waved them off.
For instance, I said that it was too big and clumsy for grocery shopping. Their answer was that I could drive the scooter to the store and then walk around the grocery store with a trolley as help. Even though they know I can only walk 20 metres, and that I wasn’t even able to do a walking test at the physio because that day I wasn’t able to walk at all.

To ”hang over a trolley” to be able to walk around the grocery store does not help if I a) can’t walk that far with or without trolley as my legs give out and I faint and b) gets a sensory overload by just being in the store! Not to mention getting there, even driving a mobility scooter is exhausting with so limited energy!

The situation is then that I can’t go grocery shopping at all as the aid I was given is not fit to what I need. As a result, I can’t go grocery shopping and thus do not get out at all. Because of this I have once again requested an electric wheelchair, or, if I can’t get that, a better manual wheelchair with an external motor such as a smartdrive.

Apparently, they still don’t understand. They still say that I will be passive if I get a wheelchair that I don’t need to get off to do some things. I don’t know if they think there is superglue in the seats of electric wheelchairs, but they have this idea that once you get one of those, you’re stuck there. Even if you get better, which is ridiculous! They can’t see the forest for all the trees. They are so focused on their objective that they don’t see how it effects me individually, and won’t step out of their box to think in a different way.

If I can walk, I walk! I still walk inside, at home etc. And if I got better, I wouldn’t walk, I would DANCE!

They also say that electric wheelchairs are only for people who are more or less completely paralysed and for older people. Once again the ageism in health care. I know a lot of 80 year olds in better health than I! It’s not age that matters when it comes to illness. Even children get cancer, and none questions that, but a young person with a chronic disease?! No way! ”You’re too young to be sick!” or even ”You’re too young to get pain killers/sleeping aids/referral to a specialist”…

Seriously? Can you stop that?

I’m fighting for my life to get more active, to get the most out of my life as it is, and all I get is an attitude that I’m trying to make myself passive.
I am so incredibly frustrated!

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Vision aid: A picture of my dog Alizza in our garden

Strangely enough, I actually didn’t get a dog to lay down and die in an electric wheelchair…

Revelation

Disability and illness

I recently realised that I’ve probably had ME since I was 12/13 years old, not 20/21 as I previously thought.
This has further turned my world upside-down, as it wasn’t already traumatic enough to get medium/severe ME at ~25 (it progressed from mild around 22 or so).

Let me explain.
All my health problems as a kid was not taken seriously and was explained away with things such as ”hormones” and ”teen fatigue/depression”. Basically what I thought was that I was lazy and hopeless and should just ”get on with it”. I just didn’t know how to do that. If fighting as hard as you can to keep your head above the surface was ”being lazy” and ”not trying hard enough”, what on earth was I supposed to do?

If I was lazy, and not fighting, everything was my own fault.
Not being able to get out of bed – my fault. It just felt impossible but everyone said it was easy. I should just do it.

Imagine this being your life for 10 years. All through your teens and the start of your adult life: Things that seem impossible, like walking up a wall, is by everyone else deemed easy, and the reason you can’t do it is that you’re lazy.
That’s a very scary world to live in. No wonder I eventually did get depressed and suicidal.

I’m working hard on trying to forgive myself. Forgive 16 year old me. Tell that scared kid it’s not their fault. They’re not useless, lazy and hopeless. I’ve never before wanted to go back in time and hug myself. Tell me that it will get better (and worse, but honestly; I’m rather physically I’ll than psychology broken. At least now I like myself.)

I’m not lazy. I never were.

First step to becoming a service dog

Animals, Disability and illness, service dog

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Today I finally finally managed to phone the person at Assistanthunden.se and have the talk about where to start with Alizzas training. First step will be when we get home from Spain, and she needs to be 1 year to get registered anyway, which is on April
2nd! 🙂

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Then we’ll start with sending a video of me and Alizza going (rolling in my case) for a walk. They want to see us in three different environments and check that we connect, that Alizza is seeking my contact and can regain contact even with disturbances. If they think we’re ready, we get registered and get the ”in training”-gear necessary to be able to go in to shops and such, and to show people that we are training. Apparently the red (training) and yellow (certified) coats with the official badges are like flames to moths and people can not help themselves from coming up and see what is going on.

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If you see a dog with a special harness, coat or some kind of badge, do not go up to it, do not try to call for it or pet it, as it is most likely a service dog and is working/training! It might do a very important job, making sure someone’s life is safe!