I am an M E survivor.
I am shocked and amazed at how many truly stupid things
are said about this disease, to me and behind my back.
This is the first time I have felt that my story would
be respected, as your information fits with my experience of this disease.
I lived with M E for 13 years before I even found out
what was wrong with me.
I had other conditions that complicated my situation
and as I eliminated each of them I was still left with things!!!!
I remember a time when I could not even dress or dry
myself without being in so much pain it was unbearable. All I wanted to do was
sleep, then as time went by I could only sleep for 2-3 hours at a time without
waking with aching tense muscles especially in my thighs and around my lower
back.
I remember asking my doctor one day when I would stop
feeling so tired!!! I told her I could not keep my eyes open. I realise now that
the word tired does not even begin to describe how I felt and as for not being
able to keep my eyes open, well there was no fighting it. All I could do was go
to bed and shut them. She said give it time, okay yeah right, and this is my
life!!!!! So when I realised that it was in fact M E that I had I went to
the brooker colour therapy clinic, they tested me and said yes, so I held my
breath, absolutely terrified that it was not going to work, terrified because
this thing that had invaded my body was destroying me and I wanted it gone. Well
it did work, I felt the tingling over my head, and the next day I could actually
see. Only someone with M E will understand that. I could see all the knives and
spoons in my kitchen sink, for a full day all I did was look at stuff that I had
not really seen for years. It was amazing, I felt it go from my thighs and lower
back. I sleep now for 6-7 hours in a row. Yeah I know amazing ay. My
recovery has not been easy. I have not been able to find a doctor that will
invest enough time to help in my recovery, no one believes me!!!! I still have
an untreated ear problem, just waiting for a hospital app. I have an endocrine
imbalance, I have peripheral nerve damage, I am still very weak, and my immune
system is very weird, antibiotics do not work on me!!!! I am so glad to find a
site like this, there are many more things I could say here but for now this
will suffice. Thank you for listening.