A Bad time of it

Well in my Fibro fog, I totally forgot about this blog again.  Not a happy post from me today as feeling really down. 
Normally at xmas time I am the one rushing around buying and wrapping pressies, doing all the food shopping, decorating the tree and the house but this year I have had to sit and wait for others to do it for me.  I hate it, I feel like a waste of space.  All I seem to be able to do is sit ont he sofa or in bed and ask others to do the simplest of things for me, like get a drink, make a sandwich, help me up etc etc etc.  I even sit there dying for a drink (I get dehydrated very quickly due to the severe sweating) as I dont want to have to ask someone yet again.

I hate my life.  People say "you will get used to it". "it takes time to adjust" etc, but that is pure bullshit.  I dont want to get used to being like this and I cannot see how anyone would.  I am unable to do the simplest of chores, I cant pop to the shop and I cant even have a drink when I want.  I am useless.  Who on earth would want to accept this as their life???

I want ME back.  I used to be vibrant, full of life, going out all the time, a right party girl.  Now I am a lump that does nothing but pop pills, moan and make everyone Else's life just that bit harder as they now have to do everything for me.

Its not fair.  I have led a fairly good life, I am sure I dont deserve this.  In fact I know I dont.  Why I got it and not some sick rapist or child abuser makes life seem so wrong.  This is why I do not believe in God any longer.  I am sick of hearing he works in mysterious ways.  They say if you follow his word you will be rewarded and the sinners shall be punished.  Yeah right,,,, I am being punished for sins I have not committed. SO as far as I am concerned if there is a god he can shove it up his arse.  I am sorry if this offend those who do believe but I am entitled to my own opinion.  This is my life and me suffering every moment of it so I have the right to no longer believe in him.

I am back on Morphine but it is doing no good what so ever, so it looks as if I will have to up the dosage when I see the Doc tomorrow.   Nothing I try helps.  Hydrotherapy, physio, pill after pill, I am up to 40+ pills a day now and still no relief from the pain.  The spasms are the worst part.  When they start nothing eases them and the pain is horrific. 

Seriously, If I was a selfish person I would have ended my life by now, I just would never do that to my family as it is them that would be damaged by it and spend the rest of their lives feeling guilty.  If I had no family by now I would have terminated my life as no one should have to endure this. 

I am one of the unlucky ones who does not get pain here or there but has it everywhere all the time. It does not end.  Now my vision is starting to get worse and I have periods of time when I cannot see anything at all except a fuzzy dark blur.  It is so scary.  My doc does not have a clue what is going on and does not seem that worried about finding out either.  I have seen the Endocrinologist but they dont have a clue what it could be but are checking me for adrenal tumours etc. 

Some of my symptoms are Fibro, some I know are CFS (my doc does not know anything about CFS) and some can be put down to something else.  I have searched online and come up with Sarcoidosis (All the symptoms are what the doc has listed for me) so I can at least get her to check for that and hopefully rule it out. 

My finger nail beds have turned pure white.  I have no pink there at all, and I am not anaemic so that points to liver or kidney problems so back to square one on that one. 

The costo is killing me and my whole rib cage feels as if it is being squashed.

God I just read this back and I sound suicidal.  I am not. I assure you, I am just having a bad week and have had enough of feeling like this.  Its xmas which is normally my favourite time of year but this year I am realising how much I have lost.

Hopefully by my next blog I will be feeling a bit better and therefor happier, I just have to hope I make some headway with the doc and my pills.  Fingers crossed.

For new Fibro suffers who read this, dont panic and assume you will end up like me, Some people have very few symptoms, some have pain in different places and that pain moves around and some are like me.  If you are not like me now then you probably will never be as it does not get worse it stays roughly that same except for the flare up which just emphasise the pain.

To all my Fibro friends I wish you the happiest xmas you can have and a relatively pain free time with lots of rest and plenty of sleep and some fun thrown in too.

Bloody Doc again

Well it seems my Doc is bloody useless as still has not sent off my blue badge forms. Its only been 6 weeks!!! GRRRR

I have had the choose and book letter from the NHS to see the Endocrinologist but it seems the appointment is for a phone consultation.  FFS.  How am I supposed to remember everything to squeeze into a 15 minute phone call.  No way that is going to happen.  I cant understand why they need to talk on the hone when the Doc has sent them a full list of my symptoms?  I am just hoping they don't decide to take me in for the tests I am supposed to have as I cant afford to go into hospital before Christmas.  I also know I do not need these tests as I know what is wrong with me but try telling that to the doctor.  She wont have it. 

I also need to go back on Morphine as the tablets have stopped working and I really cannot take anymore. Again I have to wait two weeks to see a Doctor.  I am so annoyed and angry as the Doc knows when I need to see her I need to do so quickly but the receptionist is a total bitch.  All she says is well try ringing on the day for a same day booking but she will not understand I cant do that as I cannot possibly be there ten minutes after a call. My body does not work that way.  It takes me an hour after getting up to get dressed without trying to get round there as well.  As usual the receptionist says "Its not my fault you cant do it, is it?"  Next time I am there I may well just tell her exactly what I think as I am sick of her stuck up attitude. 

I have a terrible chest infection too at the moment and cannot get enough oxygen. Still cant get into see Doc though.  I may well just wait till Monday and insist on a home visit.  That will really piss Miss snotty knickers off. 

I could understand if it was her surgery or if it was her seeing sick patients but it isn't.  It is strange though that she can always find me an appointment for the same day when the Doc tells her to.  I have also noticed she can always find them for her friends too.  I guess that is one of the problems of living in a village where I don't know many people.  I am an outsider and as such I get treated as one.

Going to have a long chat with the Doctor and get her to put on the PC screen that I am to have appointments when needed.  It was on there before but somehow the receptionist wiped it off by accident and it can only be put back on by Doc.  How bloody convenient.

Sorry bit of a moany blog again but lately nothing seems fun or happy.  This cold and chest infection has run me right down and I cant sleep again, the pain pills just stopped working and I just feel like crying.

Now that would be a sight wouldn't it.  Me sat crying, in a puddle of sweat with snot streaming down my face.  Who said I couldn't be sexy LOL!!!

My daughter is here for a few months now. She said she was coming up to help me out.  What she really meant was coming up to slob out on the sofa for a few months.  Although she does help if I moan a bit at her.

We are off to Donnington market tomorrow and I will be in my electric chair.  God help anyone who thinks they can just stop in front of me then give me dirty looks.  I am just up for them ATM.  There will be a lot of bruised and busted up ankles tomorrow.  I love Donny though as there are so many nice things there.  I adore the farm stalls with all the fresh baking and the perfume and make up stalls as they are so cheap.  Gem wants to look at plush cushions for her bedroom and I am sure we will spend a fortune tomorrow getting some Xmas bits.

Right I had better go as I am starting to get a little light headed from lack of oxygen and my lips are a sort of blue colour.  YAY I am turning into one of the Avatar creatures. Woo I will be famous yet!

Seriously though, I am going to put in for DLA soon. I know I keep saying it but it is so much effort.  I keep looking at it and then putting it away.

I keep wondering why this has happened to me. I often dream that it has gone and I am ok again then I wake up and realise that it will never go.  I cant explain to those who don't suffer from this how awful that feeling is.  I am trying to live my life along side this condition but it is so hard.  The amount f changes I have had to make.  I still try and do thing I know I cant do just cos I feel useless if I don't.

I am sick of feeling useless.  I am only 42 and feel like I am 95.  Hubby cant understand how bad I feel and I guess that is partly my fault as I cant show him but partly his as he just does not think I could possibly be that bad.


Its like the sweating, people don't realise that we are not JUST sweating, we are over heating which causes a myriad of other symptoms.  Headache, sickness, dizziness and dehydration being just a few.
If it was just sweat I would not care.  Its not though.  I tend to get the sweating when the pain gets really bad which lately is more and more often as the pills are helping less and less. 

I would not wish this on anyone BUT I do wish my Hubby would have it for ONE week.  That would be long enough for him to feel as if he was dying and he would then understand.  Some days I do wonder if this is it.  Will I die today as the pain and other symptoms get that bad. My head knows this illness doesn't kill you but my body doesn't.  I get so overheated at times I feel as if I am being boiled. 

Its worse now as everyone wants the heating and fire on but this makes me feel even more ill.  My body temp is so high all the time that the fire going on makes me dizzy and then I vomit.  The lowest my temp has been the past few months is 102 and is normally 103 or 104.  My daughter is loving it as she cuddles up to me (ouch) and says I am like an electric blanket.

I am still in bloody t shirts and everyone stares as I am still sweating.  I am sure people think I am either drunk or on drugs.  I am wobbly, fall over even with crutches, keep getting dizzy so I guess I cant blame them as if I saw someone like me I would have thought the same before.

I now know not to judge people by appearances.  I dont drink alcohol and the only drugs I take are prescription. Ok most people would be out of it if they took what I take but they have no effect on me at all anymore.  I guess my body has got used to them as when I first started taking them I was in cloud happy land.  Now they do nothing.

I have stopped hydro for now as it hurt far too much and left me unable to move for days, so it did not work for me at all.  I know it does for some people as I met a few there who were doing really well but then they were the luckier of us and were not that badly affected by it.  I was jealous I have to admit. When I saw them walking in quite normally and I struggled with my crutches. 

Anyway I had better go as I forgot what I actually came here to say and it was quite important too. ARGH.  Yes I have waffled on all this time and not put what I came here to say.  Typical fog day