This is a word picture of what it feels like to have to deal with the fatigue of post polio. This is what it is like for 71% of Australian polio survivors now, as they age with the Late Effects of Polio today.
This may help you to explain to family, friends, doctors etc just how bad this is.
I think I am just “lazy”. It is too much of an effort to get up, to walk around, to do the any work, to prepare meals. I make excuses to myself.
I can’t even think straight to “work out” what I have to do. But it has to be done. So I push myself to get on with it. I think I should be doing things, so I do. Then I am so exhausted that I am overcome with a mind-dampening exhaustion – brain fog that requires complete relaxation lying on a bed, not even thinking. After half an hour or so I start to feel some energy returning. I get up again because I can’t lie here all day. Must get on with the day’s work.
Everything is such an effort. It is like wading through water. It is an effort to put one foot in front of the other. I find the length of my stride has lessened and I have widened the base on which I walk – because I don’t feel steady on my feet and am likely to overbalance and fall over.
I find I am exaggerating lifting my feet – and put them down with a stamping effect, as I am not sure how high I need to lift them to clear the ground or how far down again to get to the floor.
I drive around looking for the closest parking spot to the shops. By the time I walk in and get a trolley, I’m wondering where I will find the energy to push it around the aisles, let alone get back out to the car. Sometimes I don’t even get out of the car. I start the engine and go home again as I didn’t have the energy to even get out of the car to go shopping. These days I only shop for essentials – like food!
Gone are the days when shopping is a pleasure and a day out with a friend is a treat!
I find I am driving with only one hand on the steering wheel. The other is resting in my lap.
It takes too much effort to have both hands on the steering wheel if I don’t have to.
When I sit in a chair, I tend to slump, and slide further and further down the chair. I know I am sitting round shouldered but I just can’t stay sitting up straight. I end up going to lie down on the bed – it is too much effort to even get up out of the chair to go to the bed – but I know I will recover more quickly if I do lie down.
I have problems hanging out the clothes as I can’t keep my arms above my head for too long. Just getting the washing basket out to the washing line wears me out. I have to go back inside and lie down on the bed for 15 minutes or so to get enough energy back to go outside again to try to hang some of it on the line. The same bringing it in again. I really need my family to do it for me.
If only they were still here to help me! It takes so long to do what used to be simple tasks.
What is wrong with me? I struggle to mow small sections of the lawn, or weed a garden bed, wash the car. I used to be able to do all this so easily!
I am so angry and frustrated that I can’t do what everyone else considers “normal” things, without it being a super-human effort. I hate having to ask my family to help me do what I used to be able to do. I feel they don’t value me anymore and resent me being here – having to help me.
They do not understand how difficult life has become for me. I hate being a burden on my family so much that I have considered ending my life to release them from the burden of my being here. My doctor can’t find anything wrong. He says it must be all in my head. He says I need antidepressants – but then I feel worse.
Is this all there is left? I feel like my life is over – it is all just too hard for me. Is this maybe what they call – “Post-polio fatigue”?
I don’t like to admit it. So often I knock back offers of help without even thinking – saying “No thanks. I am right!” or .“I can manage thanks!” even when I can’t. But maybe now I need to accept that I can actually make others feel good about themselves, by allowing them to help me.