I thought I would write this down as I don’t feel great today

I don’t know if it’s the bad pain in my lower back or my dry irritable eyes that are annoying me the most at the moment as well as the dry skin (psoriasis)the list goes on and on

I was born in 1971 Walthamstow London England and suffered from blackouts and exhaustion so was transferred to Not so Great Ormond street hospital after years of tests and no information my parents brothers and sister where ask to see a psychiatrists as they said it was all in my head and literally my mum was being over protective that didn’t go well as my dad went mad and we went home I was discharged the year after at the age of 11with asthma when my mum and dad complained they were classed as cranks

2 years later at the age of 13 I started getting blurred and double vision so had my eyes tested and the optometrists found some swelling behind my left eye and referred me to my local GP who in turn had me rushed to the Royal hospital queen Elizabeth Square and they wanted me to stay in there and then so they could operate but my mum said she needed to take me home obviously to let my dad and family know what was happening I was 13 years old and to me I was getting some time off school

I was taken through to the operating theatres and they found a malignant tumour the size of an orange at the top of my spine and it took them 14hours 25 minutes to clear the tumour as it was resting on my nerve endings at the top of my spine and they didn’t want to damage my spine after the operation I was taught to talk and walk again over a month period then a few weeks later I was transferred to St Thomas’s as there was a child’s ward there and I needed to have a very intense course in radiotherapy to kill of the last traces of the tumour
I was not able to have any steroids as was the norm after this type of surgery as steroids where made with human blood and Aids had reared its ugly head so my bones had stopped and fuse at the age of 16 so I am 5ft 4inches tall
I was discharged after being in hospital for 3 years this started with home visits at weekends and ended up with being home yes at last but I had a list of things I was not allowed to do I would never ride a bike because of my weaker side of the body I could not climb trees play football header a ball so I made sure everything they said I wouldn’t be able to do often giving my parents a heart attack each time
the next 6-8 years I was in and out of hospital as they kept tabs on me at me to see that the tumour was gone then went on with my life and found that I could not stand being in crowded areas as the tinternitus would drive me mad with the background noise the doctors said this is because I was in the relative calm of a hospital ward so this would happen
and the job I wanted to do was an electrician so this affected the job I could do as the instability of my gait even then was bad this was put down to the weaker side of my body I finally trained in computer maintenance hardware and software and got a job in a small charitable housing company called john grooms at the age of 29 this was a great time in my life as I had independence and was earning my own money this went on for the next 14 years with things getting worse medically

By the time I had reached 36 my hearing had started to deteriate dramatically and had been through 4 different pairs of hearing aids and I took redundancy a year ago because of falling at work as some mergers at work by this time I was 42 I now have really powerful hearing aids totally deaf without them there where periods earlier this year I was rushed into hospital as I couldn’t walk or stand without holding on sometimes id even fall while holding on its hard trying to tell your family at the age of 43 you feel like you’re a 60-80 year old

Hi Daryl,
I'm really sorry you're not feeling very well today.
You've surely been through an awful lot since you were very young.

I recall from your first posts that you'd recently been diagnosed with Superficial Siderosis and that were under the care of a neurologist who was looking into doing some kind of chelation, is that right?

Have you started that yet?

I also wondered if you have any friends and family with you or near you that you're able to spend time with and share some time and share your feelings.

A hug for you...

My heart indeed goes out to you. You've been through so much.
You are at the right place for reaching out, for this place is full of caring people. We are all connected in one way or another with the common bond being pain. so many different types of pain I never knew could be possible.
I too suffer from lower back pain which seems to be progressing. It truly does take our quality of life. I grab on to the 'good days' when they come and I use them to fuel me through the 'bad' days.
If that makes sense?

You are not alone. So many people here who care
including moi...

Rae