This is not who I want to be

Well I have now found out that apparently I have funny shaped legs. Thanks for telling me that, I feel so much better about myself. Seriously though, that is what my occupational therapist has told me when she went to fit me for my leg braces. So I now have to wait until next week to see which ones will fit me best.
I have now got the arm one and the elbow ones which go lovely with my stupid, ugly crutches, NOT.  At this rate I might as well just get into bondage as I am already so braced up I can hardly move. I am any bondage fetishes dream at the moment.

My daughter went home this morning, which has broken my heart as I know I wont be able to see her for a few months now. 
Well I finally got to sleep this morning at 6.30 am ish. What a long night. I could not find a position that did not leave me in pain.

I really wanted to get out of the house today. I dont care how much I hurt, I just fancied getting out whilst hubby is home. My suggestion of going for a nice lunch fell on deaf ears.  Its not as if he would be paying either.  He is just bloody boring.  I cant go out pubbing or clubbing for obvious reasons but I can manage a meal now and then. Him indoors though thinks this is too much effort for him.

All I want is to be able to do something normal now and then. So that I feel normal and not totally housebound but yet again, no.  Another day stuck indoors doing nothing but staring at the tv whilst he plays with his bloody Iphone.  I am bored, fed up and even though he is here I feel so alone.  He does not understand my need to feel like a normal person.  He thinks me getting arsey as he refuses to do anything I want to do is me being a pedantic child.  Ok crying just because he wont take me out is a little childish I admit but I cant help it.  I am so down at the moment. I am finding it hard to get out of the grief stage and on to the anger or acceptance stage.  I keep crying for what I cant do, which to be honest is just about everything.  With these arm braces and trough crutches even popping to the shop in my car is exhausting on my own.  Trying to get in and out with the crutches when you cant bend your arms is so hard and leaves me breathless.  So I find it easier not to go as he takes 5mins to get there buy what we need and get back it takes me over half an hour.

I guess from my blogs everyone can see I am still in the grief stage and finding it very hard to move on from here.  I just with he would understand. I have lost my life. The Nette everyone knew has died. She is no longer in this broken body.  All I am now is a wanter. I wan to be able to do something, anything, I dont care what. I want my life back. I want to not be in pain.  I want to be able to just 'pop' out. No have to have a military operation just to buy some milk.  I want 'ME' back.  I want the fun loving, outgoing, outspoken party girl back. Instead all that is left is a moaning old bint, whom never seems happy, is always harping on or crying.  This is not who I want to be.  I want to be able to say, I am going out with the lads, or if you dont want to go for dinner, I will go alone. I want to be able to go clothes shopping and carry a handbag.  I WANT TO BE INDEPENDENT AGAIN.

I desperately need to move on but do not know how.  I keep saying to myself this is my life now hoping that it will sink in and let me moves on. It does not though. All that happens is each time I say it to myself I feel an aching deep inside and feel sick.

If anyone has any idea how to accept my future please, please let me know as I cannot possibly carry on like this.  I know I need a support group or something where I can talk my feelings out as I cant do that with hubby as when I try, I see his eyes glaze over, he picks up his damn Iphone and its a case of here we go again, she is moaning again blah blah blah blah blah.  Even writing this I am crying.  I do not know who to turn to or where to go.  Last week I saw the Occupational therapist and felt so stupid.
She asked me a simple question "how do you really feel". That did it. She is the first person to ask and I broke down in tears. I mean really broke down. I spent the whole appointment crying like a baby.  I have to see her again this week so am going to find out if there are any support groups and if not if she can arrange for me to see someone to talk as I really feel like I am cracking up.

I only seem to blog when I am feeling really bad as on a good day I dont feel the need to.  I really feel for any new Fibromites who come across this blog as they will see how bad this illness can sometimes get and it may worry them, when in fact not everyone gets it this bad.  Some people function quite normally and just have a small manageable amount of pain and never need, braces, crutches, a wheelchair or a bum wiper.  For those who read this that do not have this but know someone who does, you may get a better insight into how it affects them.  They could be feeling exactly as I do but like me cant tell you.  It might make you realise that they really are feeling that much pain and just because you thought 'it cant be that bad' it really is.  Te person you know, is not making it up for sympathy. They really are in excruciating pain all the time, they really are so exhausted that sometimes they pee themselves a little as dont have the energy to get upstairs.  This is a condition that you cannot see but that the sufferer feels constantly, without reprieve and often it gets worse during a flare up.  Yes worse than it is already. Where the pain overtakes any pain killers a doc can give and where the sufferer prays to go to sleep and never wakes up.  I know I myself have prayed for that many a night.  That God would have just a little mercy and take me whilst I sleep (if I ever get to sleep that is).

Anyway I had better go as can no longer see my screen.

SPARE SPOONS ANYONE???

Has anyone got any spare spoons, I have run out and have even borrowed from next weeks. I am exhausted beyond belief and the pain is not being touched by the pills and as usual hubby does not get it.
I was awake and out of bed at 8am at Donnington market by 9.30 and even though I was in my chair it wore me out. Hubby also would not let me take my electric chair saying it takes up too much room. It takes the same room as the one he has to push apart from the batteries but gives me some independence. I did not really get to look at anything I wanted as he kept not hearing me and making me feel really small so I just sat quietly in the end as it was less embarrassing.
I need that little bit of independence the electric chair gives me but I think he likes the power he has over me when we have the one he has to push as he is in control.

We then went shopping at Asda (yeah I know far too much in one day) and got the weeks shopping. When we got back he decided to lay in the garden so it was left to me to clean the whole kitchen.

The pain I am in at the moment is unbearable. I literally hurt from my head right down to my ankles and although I am eating painkillers like sweets they are having no effect at all.
Crying does not help at all and neither does trying to explain to hubby how bad I am as it always turns into how bad his back/neck/arm is. I would gladly swap bodies with him as he would soon want his back after spending a few minutes in mine.

I dont even know how the hell I am going to manage to go to work tomorrow but as I am self employed I have to as we need the money I earn as his wont cover us. It is awful. I would quit in an instance if I could as the pain when I am working is unreal and totally undescribable.

I just thankgod for this blog as I can be honest here and not feel that I have to hide how I feel to keep the peace.  I do sometimes wonder if I would be better off single as I cant spend my life like this.
Hubby's idea of cleaning the house is washing the dishes and doing his own washing. He doesnt realise claning the kitchen is a much bigger job than just the dishes and other things need to go in the washer not just his stuff but he does not seem to take any notice at all. When I go to do it all he says is leave it I will do it later. Later never comes so I end up doing it anyway.

Infact he is practically no help at ll at home and it would be easier without him as I would not have his mess to deal with.  Sorry this is a rant as I am fed up. He damn well knows the smell of alcohol is one of my triggers plus it makes me violently sick so sleeping with someone who has been drinking is a no no as not only do I end up in worse pain I spend the whole night throwing up. So what does he do? he lies and says I am imagining the smell and he has not been drinking just so he can go to bed. This leaves me in pain and puking all night just cos he is too selfish to admit it and sleep on the sofa.

AAAAAARRRRRRGGGGGGHHHHHHHH!!!!!

If only I could scream like that for real I am sure I would feel alot better than I do right now. Anyway I had better sign off before I really start ranting and make my hands feel worse than they do now

Rather rude of you

Blimey, I did not realise it has been over two weeks since I last blogged.
My 17 year old daughter has been visiting me and as I normally miss her so much I have spent every spare moment with her. She has found it quite difficult visiting this time as I am no longer able to do the things we always did together.

Have still been having physio every week although it is not helping but hey ho, if I dont go then I get no help at all as they see it as not needed.
I am not too happy about having to see the OT and having leg and arm braces. It is bad enough that I know have to use 2 trough crutches as one just is not enough. People stare at me as the crutches are not the sort one would normally see around town.

I am trying to be positive at all times now but am finding it hard as have so many new problems. I keep getting an awful pain from my stomach right down my back passage. Docs answer??? Probably fibro. It feels like the contractions I had when giving birth but in the back passage not the front. Probably fibro my arse (no pun intended). This seems to be the normal excuse now for everything. Doc, my leg fell off, 'oh its probably fibro'. Its a joke.  I have not been able to move for the past two days because of this pain. It really is that bad. It goes and as soon as I move it comes back.

On a brighter note I did manage to take daughter clothes shopping when she first arrived. She thought the wheelchair was hilarious especially as it goes so fast. Hubby came too of course and it sounds silly but I felt so jealous of them. They would start walking and I kept ending up behind them in my chair. They did not realise I was being pushed out as when you walk and talk you tend to move closer to the person you are talking with so I ended up being pushed out. Its a natural thing to do but I still felt it, if you know what I mean.  It was an awful feeling which I felt so guilty about.

Oh and to the TWAT, yes TWAT in ASDA. I am disabled. there is no need to stare or point or make rude comments. No it was not a youngster but a 40+ gent in a suit. I dont choose this life style. I dont choose to walk this slow on my crutches. If it was my choice I would choose to be able bodied not a bloody cripple.
This condition chose me but I am not going to hide away for your convenience. I am here, I will be seen and I will be heard. If you dont like it or I dont fit into your perfect world then pass me by and ignore me. Do not spout your ignorant crap at me or about me. have a little dignity. That is one thing I still have that this illness cannot take from me. DIGNITY!!! Perhaps you may learn that word one day but I do hope it is not because you have ended up like me as I would not wish this on anyone no matter what they have done in their life.

Oh I forgot. I finally went blonde. It took four days of being bright orange but I am now a lovely golden blonde. I will be going blonder over the next few months but I will do it gradually. I also had so much of my hair cut off. It is now a shoulder length bob. It helps so much with the sweating problem and is so much easier to get combed every day now. My hair is normally so thick so having it really long made it nearly impossible for me to wash/dry and comb.
I am so pleased with the finished result though. It looks so FAB.

I had better go as my fingers are absolutely killing me. I just wanted to send a little prayer via my blog that somehow I can eventually afford a ramp for my front door, a stair lift so I can start using my upstairs again so can have a shower and use the loo instead of commode and a wet room. OMG those things would be such a life saver.
Anyway better go before my hands seize up totally

Toodle pip