Where do I start!!! I have had a hell of a time lately. My Fibro symptoms have gotten really bad but now my Doc actually thinks I have MS instead so have to wait to see Neuro now. Oh Joy another worry for me.
Saw doc today actually and wished I had not. I turns out my blood pressure is too high but the low part is too low, WTF does that mean. My heart rate is also far too fast so next week I have to have yet another ECG. Bet it is settled by then as this always happens. Seems I am falling apart quicker than I thought I would/
The main problems are the severe muscle spasms that can last for weeks and the blurred vision and loss of speech. I slur now and struggle to say quite a few words and also forget what words to use so often use one that has nothing to do with what I wanted to say. This really annoys Hubby and things are going downhill fast in my marriage as he still expects me to work full time and keep house (no one can keep house with just Fibro let alone my other problems). He gets angry if I say the wrong thing even though he knows I am struggling and I am starting to believe I will actually be better off on my own as I do not think I can take much more of him always judging, refusing to allow me to take the wheelchair when we go out and basically making me feel worse than I already do.
I have pretty much had enough now. My meds are always being messed around but like the doc said if it is MS there is no point me taking them anyway. We are almost broke as I cannot work that often and guess I am lucky I can come and go as I please at work or I would have been sacked by now. I have managed 3 days in two weeks which is not good and on those days I only worked 4 or 5 hours. It is a bit of money I guess.
I am trying to get some cash to buy myself a Powerchair as then the miserable old git wont be able to moan that it will damage the car like my electric wheelchair and I will be able to start going out YAYY. He moans I am getting depressed and our sex life has died. Hmmm Really well let me run you over with a truck then tie your legs into really painful angles so you cannot move them to relieve the pain and then tell me you feel sexy. Not going to happen is it??? Also how can I feel attracted to someone who wont take me if I use my chair? Am I really that embarrassing?
Well sorry but until you start making me feel like your wife you cannot expect wifely duties to happen.......So there!!!! Shove that up your bum and suck on it!!!!!
Ok a bit childish but sex is the last thing on my mind with what I am dealing with at the moment. If I do have progressive MS then life has a rather bleak outlook
Anyway not a happy blog but at least I remembered to write one at last as I keep forgetting just like I forget everything else lol
Thursday 9 August 2012
Thursday 2 February 2012
BAAHHHHHHHHHHHHHHH
I have not blogged for a while as have been struggling a little. My vision is getting to be more and more impaired and my Doc does not seem worried in the slightest. In fact it is as if she has now given up and cant be bothered. I am still having tests for my kidneys but apart from that it seems as if all the new symptoms that I know are not fibro are being put as fibro as it is easier to explain.
So it look sas if another argument is coming my way. I am sick of fighting to find out what is wrong.
On the fibro front I have been in a massive flare for a while now. Constant muscle spasms are driving me mad. The pain is unbelievable. I cant sleep, I am exhausted beyond anything I have ever felt before, I am struggling to do the most basic of things, like make a drink, have a wash as my arms hurt too much, I cant remember the last time I had a bath or shower as it is just no longer managable. I could cry. My hair is a total mess and I have massive roots but I just cant sit in a hairdressers chair for 3 or so hours. So I am stuck looking like this. I may even ask hubby to do my roots and hope for the best so I can at least sit on the sofa.
Went to the hospital to visit the Mothing in Law as she had a new knee fitted. A nurse admired my pink crutches and asked how long I have them for and MIL replied forever. Quite a shock when others realise you are disabled forever. I keep hoping I will wake up one day and it will be gone. I know its silly but day after day, night after night of pain just gets too much.
I cant go out very often as my wheelchair is too heavy for me to fold and put in my car. I want a Luggie as they fold realy small and are really light but I dont have £2490 to spare. I guess this is my life. I have to get used to being either stuck in bed or stuck on the sofa. Not much of a life is it.
Right now I am dying for a coffee but dont have the energy to get to the kitchen and cant lift the bloody kettle if I managed it.
Do I want a change in my life..............Too bloody right but I will never get the change I want.
I keep saying I have to face it but the next day I start thinking what if it does go away. Not very realistic but I suppose it is easier than admitting I am disabled for life. This pain will never stop and I will never be able to function normally. I will always have to rely on others to wash me, help me to the toilet, remind me to take my pills, help me in the night etc etc etc. It would be nice if I could even make myself a sandwich as I am starving but I cant.
I never realised what being disabled meant. I never once thought about how hard it was for someone who is fully disabled to do things everyone takes for granted. Going to the loo, getting a drink or food, having a wash, combing their hair. eating even. All things normal people can do and dont even think about yet for a disabled person it takes military planning to do any of that and thats assuming they can do it in the first place.
Its an awful life and one I would not wish on anyone (well maybe our government for a few weeks and those that decide disability benefits, cos if they lived like me they would soon change the way they decide benefits).
I will have my medical soon and if they even try to touch me I will be in tears as my skin cannot bare any contact at all. I wear a baggy bathrobe so there is as little contact with my skin as possible as it feels like it is burning. Having someone poke me is going to be too much and I can see me getting very upset and losing my temper as I dont take pain well.
I probably wont be awarded benefits as it seems they turn just about everyone down the first time and I will have to appeal. I do not see why they dont just go on what the docs and the consultants and OTs and Physios have to say. It would make life easier for us if we did not have NON medical people poking at us.
So it look sas if another argument is coming my way. I am sick of fighting to find out what is wrong.
On the fibro front I have been in a massive flare for a while now. Constant muscle spasms are driving me mad. The pain is unbelievable. I cant sleep, I am exhausted beyond anything I have ever felt before, I am struggling to do the most basic of things, like make a drink, have a wash as my arms hurt too much, I cant remember the last time I had a bath or shower as it is just no longer managable. I could cry. My hair is a total mess and I have massive roots but I just cant sit in a hairdressers chair for 3 or so hours. So I am stuck looking like this. I may even ask hubby to do my roots and hope for the best so I can at least sit on the sofa.
Went to the hospital to visit the Mothing in Law as she had a new knee fitted. A nurse admired my pink crutches and asked how long I have them for and MIL replied forever. Quite a shock when others realise you are disabled forever. I keep hoping I will wake up one day and it will be gone. I know its silly but day after day, night after night of pain just gets too much.
I cant go out very often as my wheelchair is too heavy for me to fold and put in my car. I want a Luggie as they fold realy small and are really light but I dont have £2490 to spare. I guess this is my life. I have to get used to being either stuck in bed or stuck on the sofa. Not much of a life is it.
Right now I am dying for a coffee but dont have the energy to get to the kitchen and cant lift the bloody kettle if I managed it.
Do I want a change in my life..............Too bloody right but I will never get the change I want.
I keep saying I have to face it but the next day I start thinking what if it does go away. Not very realistic but I suppose it is easier than admitting I am disabled for life. This pain will never stop and I will never be able to function normally. I will always have to rely on others to wash me, help me to the toilet, remind me to take my pills, help me in the night etc etc etc. It would be nice if I could even make myself a sandwich as I am starving but I cant.
I never realised what being disabled meant. I never once thought about how hard it was for someone who is fully disabled to do things everyone takes for granted. Going to the loo, getting a drink or food, having a wash, combing their hair. eating even. All things normal people can do and dont even think about yet for a disabled person it takes military planning to do any of that and thats assuming they can do it in the first place.
Its an awful life and one I would not wish on anyone (well maybe our government for a few weeks and those that decide disability benefits, cos if they lived like me they would soon change the way they decide benefits).
I will have my medical soon and if they even try to touch me I will be in tears as my skin cannot bare any contact at all. I wear a baggy bathrobe so there is as little contact with my skin as possible as it feels like it is burning. Having someone poke me is going to be too much and I can see me getting very upset and losing my temper as I dont take pain well.
I probably wont be awarded benefits as it seems they turn just about everyone down the first time and I will have to appeal. I do not see why they dont just go on what the docs and the consultants and OTs and Physios have to say. It would make life easier for us if we did not have NON medical people poking at us.
Wednesday 11 January 2012
Bad times
Oops a daisy I have forgot all about my blog of late.
Not that much to post though as having a major shitty time of it,
Xmas and new year went ok although suffered badly over xmas. I ventured out with hubby and the bloody electric chair on new years eve. Lord did I suffer but it was nice to have a night out with friends.
I got a beautiful pandora bracelet and lovely charms off hubby for our wedding anniversary.
Me, I am still having vision problems, muscle spasms where I should not have them and problems with my bladder. (I cant pee enough in one day to do those stupid 24 hr water tests) The tests are on hold until I can pee enough as I still have 4 bottles to fill. I only go two sometimes 3 times a day and then only a little as my muscles start to spasm and I stop.
My vision still keeps going blurry and the pins and needles in my extremities is getting worse. I have docs on Monday with the good doctor so am going to politely (cough cough) insist she sends me to see a Neurologist for further tests. I want to rule out MS, it sounds silly but have been reading up on it and I have all the symptoms but have found out that a large majority of sufferers are told it is FM for years until they get the right tests and suddenly find out it is MS. Doc thinks it might be Myasthenia Gravis cos of my eyes and the fact they have drooped as well but I dont think it is. I know how I feel and what symptoms I have so I will be seeing a Neuorologist whether she thinks I should or not. It isobviously a problem in my brain somewhere as too many parts are affected. My eyes being the scariest.
Doc is trying me on Gabapentin which is crap. I cant take Morphine whilst on it and am in complete agony all the time. Now the Morphine has stopped I am having spasms in one of my legs that last for about 10 days so far without relaxing. It is more like spasticity than a spasm.
Apart from that everything is just great lol.
Not that much to post though as having a major shitty time of it,
Xmas and new year went ok although suffered badly over xmas. I ventured out with hubby and the bloody electric chair on new years eve. Lord did I suffer but it was nice to have a night out with friends.
I got a beautiful pandora bracelet and lovely charms off hubby for our wedding anniversary.
Me, I am still having vision problems, muscle spasms where I should not have them and problems with my bladder. (I cant pee enough in one day to do those stupid 24 hr water tests) The tests are on hold until I can pee enough as I still have 4 bottles to fill. I only go two sometimes 3 times a day and then only a little as my muscles start to spasm and I stop.
My vision still keeps going blurry and the pins and needles in my extremities is getting worse. I have docs on Monday with the good doctor so am going to politely (cough cough) insist she sends me to see a Neurologist for further tests. I want to rule out MS, it sounds silly but have been reading up on it and I have all the symptoms but have found out that a large majority of sufferers are told it is FM for years until they get the right tests and suddenly find out it is MS. Doc thinks it might be Myasthenia Gravis cos of my eyes and the fact they have drooped as well but I dont think it is. I know how I feel and what symptoms I have so I will be seeing a Neuorologist whether she thinks I should or not. It isobviously a problem in my brain somewhere as too many parts are affected. My eyes being the scariest.
Doc is trying me on Gabapentin which is crap. I cant take Morphine whilst on it and am in complete agony all the time. Now the Morphine has stopped I am having spasms in one of my legs that last for about 10 days so far without relaxing. It is more like spasticity than a spasm.
Apart from that everything is just great lol.
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