Hi, my name is bella57! I’m brand new here but after some advice from others going through the same.

bella57

Hello, I’m brand new here but after some advice from others going through the same if possible?

I have Spina Bifida, kyphosiscoliosis, a badly tethered spinal cord and issues with my bladder and bowel which all cause chronic pain daily and I was given a hospital bed at home and have been bedridden for the last 6yrs for 22hrs a day as I have to take the pressure off my spine and spinal cord by laying down as sitting up and walking causes chronic pain and I’m very weak in my legs. I also suffer with depression because of it and also social anxiety.

I recently saw my neurosurgeon who told me it’s progressive and I will just get worse as I age ( which is true as I’m 57 now and over the last 6yrs have gone down hill rapidly.

He told me it’s important that I still stay laid down but that it would help me tremendously if I work with a personal trainer at the gym to build my core muscles up to protect my spine as much as possible to prevent further surgeries which would be very dangerous for me as could completely paralyse me from the neck down.

So I spoke to my Gp and they referred me to a trainer who specifically works with people who have disabilities at the gym and this will be my 3rd week I have been doing the rehabilitation work with him and he’s brilliant as he’s taking it very gently with me as the neurosurgeon said we must do.

We take it extremely slowly and it takes about 1hr once a week but I am really stressing as I am on the highest rate of DLA for everything indefinitely and I’m SO scared that I will lose the highest rate of mobility which I really need.

I’m scared I will be watched and I’m really paranoid about it. As I have heard lots of people have lost it due to the fact they are seen walking a short distance?

My husband is my full time carer and drives me there and back and I just walk from one piece of equipment that we are using to the next so not very far at all and when I am on something it’s all very gentle and slow. It’s helping my mental health so very much also.

I get really depressed being stuck in a hospital bed and this is helping me feel like I have a bit of a life again and I’m finally able to actively do something to try to help myself physically and mentally. I am on SO much pain medication it’s unreal and on the strongest opiates but I want to do something to help myself all round but I’m just SO scared someone will report me?

I would really value your advice if possible?

Please forgive me if I don’t get back to you very quickly as I’m in a lot of pain.