The pain makes me sad

Disability and illness

When I have a pain flare up, which often coincidences with PEM (Post-exertional malaise – the increased symptoms that comes after an activity when you have ME), it takes so much energy and leaves me lethargic and weepy. I try to think positive, but it’s like I’m always at the brink of tears. Like I carry a great sadness, my whole body just feels sad. 

It’s tough to keep my nose above the water these days, especially as I can’t do anything to cheer myself up. The stress of all the things I need to do that I’m unable to because of my health is immense. I try to let go, as I can’t do anything about it, but I constantly feel as if I should just try more. 

Some days this chronic illness thing sucks more than others. 

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!


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…