I have had my Baclofen doubled on Friday after a visit to my doctor,who had to check a book first to see if it could be upped,not moaning about that she did the right thing.
The spasms are so bad that I was having full body stiffness during the night again.Spasms so harsh and painfull during the day and gosh my arms,legs,shoulder would realy jump.The heat is killing me and I am dragged so low I do not think I can go on much longer.I have got terrible fatigue,I dont sleep during the day I get so worn out I pass out.I took my child and two of her frinds to the park on Saturday and I sat on the bench as usal and I passed out,the children thought I had fallen asleep.I woke suddenly with my child mentioning one of her friends name.
My body is vibrating,twitching,jumping about,I am in great pain all day and night.I am photosensative now were even factor 50+ dont stop me from burning.My arms and face are terribly burnt and yet I dont sit out in the garden like many sun worshipers do.My eyes burn and water and fuzzy site all day.
My hands have swollen so much I could not get my rings off for three days,my legs,ankles and feet are like balloons,I cannot get a pair of shoes on my feet and have to wear my pink booty slippers.
Im crying all the time as I am so poorley.
I had a cool bath this morning which did make me feel better for about an hour and again tonight a cool bath and again made me feel a little better for a short while.I know the heat is causing all these terrible symptoms.I managed to get my rings off my fingers today and lucky I did as I am swollen badly again,the swelling never goes away just lessens.
My doctor has written many times and telephoned the neuro,she even rang while I was on Friday.But again she got no reply.My doctor is fighting for me so hard and I do appreciate all her efforts,she is very angry and upset that they have not answered her letters or calls.She wants my LP done NOW and she is not happy I have been left to suffer,with no MS nurse,no OT.That I myself had to get a physio and a Support Worker.Why is it so hard to get help?
Ive had symptoms since I was 19 years of age.The past three years have been utter hell for me.Ive been reading up on diffrent types of MS.
My symptoms never go away,they may just ease once every 1-2 weeks for a few hours or maybe its the meds helping me out.
I feel so low and dont feel myself at all.I cannot wait for rain and cooler weather.I sat infront of a closed double glazed window and the sun burnt my back through the unit.
Ive tried asking family for help but they just ignore my plees.I have friends who are more helpfull.
I just want be me again.Will I ever get better?
Yes I suppose I will but at the moment without my doctor getting help to treat me she is also hitting a brick wall hard,she is trying but she aint a specialist who deals with MS.
The nextdoor neigbour is a bully and plays loude music from about 10-30 am until about 7 pm were he then turns it down.Its giving me terrible headaches,with a combination of the sun.
I just wanted a good old moan and get how I feel out of my system.I need to STOP crying and blubbering all the time.I do fight back but this hot weather is stopping me and my life from moving forward.I dont want to live this terribly painfull life mush longer.I just need help to get better and the neuro is holding everything back…