I suffer from an ‘invisible’ illness which no one can see but affects my daily life severely. I have chronic back pain amongst other things and need to use a wheelchair, wheeled walker or a mobility scooter to get out of the house, which is not something I want to do, in fact I feel like a bit of a recluse as I am much happier to stay in the house as my pain doesn’t flare up as much as it does when I’m out and about, which is why it doesn’t happen very often except to take my dogs out. It is not that I want to be a recluse, I do not relish my time indoors by any means but it is easier to control things, like if I fall I know where to grab on to furniture/doors to prevent me going right down on the floor as it is extremely difficult if not impossible for me to get up by myself from a fall and also the actual ‘thud’ when you touch the floor sends pain reverberating up my spine. I fall for different reasons 1. Because spasms in my back and legs catch me off guard 2. My knees or hips collapse or 3. Shooting pains in my back and legs. During the actual falling movement, I can twist and jerk my back which obviously increases the pain on top of the contact with the floor. Once I have fallen it can take up to 45 minutes before I regain enough strength, following the after shocks, to be helped up, but that isn’t the end of it, the increase in pain can last up to a week before it settles back into the ‘normal’ frame of pain. Also when in the house I am not moving around a lot so my back is being rested whereas outside it is continual movement, even in the wheelchair or scooter. When I do make it out of the house, I need someone with me to push wheelchair and help me reach things on shop shelves and of course to drive me. Being in the the car is extremely painful as not only do I feel the vibrations from the car engine constantly but the roads are in such a dire condition that I feel every bump on the road through my spine so by the tine I reach my destination I am already in extreme pain, so much so that a lot of the time I send my parents into the shops with my shopping list while I wait in the car! If I do manage to make it into the shop it is mostly to the supermarket where I know they will have a mobility scooter that I can use, although the supermarket scooters are terrible always jerky and bumpy which again hurts my back and I have been on 2 that gave run out of juice half way round the shop, which my father had to push me back and just as it is running out of juice it gets really jerky. Not only does the jerking cause pain but you gave no idea how embarrassing it was to get pushed back, with everyone staring!
Whether using the supermarket scooter, my own scooter or wheelchair I get some funny looks from people of all ages, but I have to say that the elderly give me the most dirty looks. Maybe this is due to my age and that my disability is invisible that they think I shouldn’t be on it or don’t need it or they think that they need it more than I do. When my pain first started, I got bullied by the youngsters hanging around the streets, they used to laugh at me, call me names, kick my walking sticks away from me and circle around me on their bikes to intimidate me and it worked! I see the same kids now a but grown up and left school and now they try to speak to me and one even told me he treated me like that because he fancied me and thought it was the only way I would notice him! He is half my age! Although this was a pipe dream on his behalf, he actually saw past the walking sticks and saw me!
Disability is a full time job! Ok I am sitting around the house so you’d think I had loads of time on my hands, but that is not the case as doing even the simplest of tasks takes so much longer than if I was able bodied, though my mind is contradictory as I know it takes longer to do things but when someone asks I will still say ‘oh I will only be a couple of minutes’ when in reality I am half an hour. This must grate on people but I’d like them to know that this is not something I do to annoy them, I am trying my hardest but it is outwith my control. I am a people pleaser and always have been, so now I have this continuous feeling of guilt and that I am letting people down and I am tired of holding on to this guilt as I can’t change the pain or try any harder than I am already. So I am trying to let go of this feeling but it’s not easy as it is another step towards acceptance of my limitations, so it has become a kind of security blanket in a funny way, which sounds strange I know – how can guilt make you feel secure? As I said it’s another step towards acceptance, but to accept is like putting the final nail in the coffin of my old life, dreams and aspirations, which I do know are not possible now and those dreams/aspirations have to change but I’m just not ready to say that final farewell to the old me. I realise I have to though to make room for the new me.
The pain itself is a lot to deal with, but the mental side effects are something you don’t think of until you are in that position, the future becomes a black hole and for a long time I believed there was no future for me as my dreams had been ripped apart and I didn’t know how to move on from them, as I had had them all my life up until the pain started. When I thought of the future I just cried as who was going to want to marry me/be friends with me/want anything to do with me when I kept letting people down? I realise now though the person I was letting down most was myself. I still have a long way to go but I am getting there and can see the light at the end of the tunnel, it might just be a tiny glimmer of light in otherwise darkness but it is there and will continue to grow. And I always have my dogs, which can lift me out of the deepest depression by just being themselves