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

Seen the Doc and other bits

Well I finally saw the doc again.  SHe did not ring as wwanted to tell me in person that the Endocrinologist wants to see me. Apparently I now have to be tested for Cushings disease and four other things although cant remember the names.  I have no idea why.  Anyone with a brain can tell that these symptoms along with Fibro mean ME/CFS but obviously the consultant is not busy so he wants to do loads of tests some of which mean a stay in hospital.  Just what I need.  I have found in those places the nurse responsible for giving out meds does not like giving you them when YOU need them but only at the time she wants to give them. No good for me as need them at my set times as they are the times that work best for me.

Went shopping in Asda today.  Hubby took my electric chair. Oh it was heaven.  I managed to have a good look round and even bought myself some winter boots.  I was not there that long but being in the chair made all the difference.  Now if only people would realise chair users cant move out of the way as quick as feet and no amount of tutting they do will change that.  Blimey some people have no manners at all nowadays.

My meds seem to be wearing off a lot quicker than they used to which is a bugger and I seem to be spending more and more time in bed.  Not liking that much but it does ease some of the pain so it has become necessary.  At this rate by the new year I will be completely stuck in bed as any movement now is so terribly painful.

Still not found anyone to respray my wheelchair yet but have not given up hope.  I never will.  I just feel that if I have to use the aids to make my life a little more normal then they may as well look fun and make me smile.

I have hydro on Wed and am dreading it as the last session wiped me out completely for days
I wish I was normal but know I am not and have decided it is time to claim DLA.  I have put it off for as long as I can as I did not want the 'Disabled' label attached to me.  To me it is admitting defeat. To my docs and therapists it is just learning to live a different way and getting the help needed to do it.  Not sure I believe them but then again my knowledge of people with disibilities is very limited to what I have seen on TV.  I never really knew anyone who was disabled.  The people I always mixed with were very fit and active.  I also had to be to do my job.  Working as a doorman and being a woman I had to be twice sometimes three times as good as the men and we would have training days where I had to prove it to get respect.  Now I cant even get myself dressed so it has been a giant learning curve for me.

Anyway.  I guess what I am trying to say is I am slowly coming to terms with the fact that this is me now.  It will take me a while longer yet until I am comfy with it and I guess I probably never will be completely comfy with not being able to do simple things myself.

Anyway this is just a quick update as although only 3 pm I need to go to bed for an hour or two as I am feeling very poorly again

Waiting, waiting just waiting

I sat by the phone with baited breathe. Waiting, waiting, just waiting for the Doctor I saw last week to ring me.  Remember she had promised to ring by this Monday at the very latest.  By lunchtime my patience had gone the way of the 2 dairy milks I had next to.  Lord knows where they all went.  I gave in and rang the surgery.  The receptionist had no idea what I was talking about but left a note on the PC for the Doctor to remember to ring me.  By 4pm I knew it was not going to happen at all.  I then rang the surgery again and said as she is not going to ring me as promised, I need an appointment with her THIS week.   Her reply, (banging head on table as I write this) "sorry but she has more important people to see, so you can see her the last week of October". 
Really, I can, can I??? Considering I have enough pills to last 3 days and have no repeat as she wants to monitor me?  I then asked for her name so I could put in an official complaint as I do not consider a lowly receptionist has the power to decide if I am important or not.  Yes OK I was rather snide but what do you expect after waiting so long for this bloody call.
Funnily enough 'Wendy' (yes she actually gave me her name) suddenly decided that I was important after all and could see the Doctor on Thursday at 10.  Ohh surprise surprise, there are appointments then?  (yes still sarky I know but hey I was on a roll).  She then replied there was no need for me to be like that.  NO REALLY? you think that do you?  I then asked her if she knew what I suffered from to which she replied no.  I then asked how the hell she could determine if I was important enough to be seen or not without knowing what I needed to see the Doctor for.  She went very quiet and sat Thursday at 10 then, goodbye.   Yes after being that rude she actually had the nerve to hang up on me before I had finished.

Now yesterday was not a good day to piss me off.  Not only was I upset as it seems I was fobbed off by yet another doctor with false promises to ring me and tell me what was wrong but I also came out in a cold sore the size of a water melon on my top lip.  (I have now decided lip fillers would not be a good look on me).  I was in agony as had a very bad night, was sat dripping in sweat and the last thing I needed was some jumped up receptionist full of self importance trying to make me feel belittled.  Normally I would have kept my mouth shut and said thank you for allowing me to see the doctor in 7weeks time.  Yesterday she felt the full force of how annoyed and fed up I am and I will be putting in a complaint about her phone attitude.  I also hope I am still in this type of mood come Thursday as I really want to tell the doctor exactly what I think of her fobbing me off as well.  I do not appreciate it.  If she does not know what is wrong just say.  Do not give me false hope and make promises she wont keep.

Perhaps I need to go in a full length black leather coat with boots and a whip. I may get taken seriously then. Go in and crack the whip at her and bark orders.  Who knows, it may help or get me committed lol.

I am now also wondering if she has bothered sending my blue badge form off to the council or not as I should have heard something by now.  I will go mental if she has not bothered. I can see me getting arrested if she has done nothing at all.  I am sure she will look lovely with one of my pink crutches shoved up her arse

Today my lip is so painful and huge.  It looks like I lost a fight with a hornets nest.  My hair is sopping wet with sweat and the pain is everywhere.  At least at the moment I can see though which is always a bonus.
I have read through my blogs and they are all doom and gloom so am going to try and put a happier spin on them or if I cant be happy then a humorous spin. (my humour is sarcasm).

Hubby read something I wrote either here or on facebook and got arsey saying I never said it is too much hassle to take your chair.  UUMM yes you did. Many times.  It always if we have to take a chair we will take the one that he has to push.  No thanks.  I much prefer being able to whizz around in my electric chair. It gives me a little freedom and independence.  I then dont have to ask you if we can stop to look at something.  I can just go and do it.  He does not get it

He is always like, if you want something just ask.  Sorry but I am 42 and dont want to have to ask to look at clothes or food or anything else.  I want to be like everyone else and just go and do it.  I suppose he thinks he is being helpful.  He isnt he is actually being controlling. 
I dont want to be looked after.  I want to look after myself.  Well ok, as much as I can. 

I must admit I am starting to get a little worried now about my stairs.  I cant tell hubby as he would ban me from using them but have slipped on them quite a few times lately.  My knees are very sore and my right hip is agony from falling.  Now I know he should know but there is nothing he can do.  We cannot afford a stair lift at all.  Xmas is just around the corner and a stair lift is not a necessity until after that. 
Gosh I am totally dreading xmas shopping as have no idea how I am going to manage it.  I have difficulty thinking without being in crowds as well.  The idea of trying to buy that many presents with all those people around is frightening.  I am hoping to do alot of it online as cannot do it any other way.

I am also worried that people will be disappointed this year as they will not be getting anywhere near what they normally do.  I just cannot do it financially anymore.  It costs too much. 

Jeez another short update that seems to have gone on and on and on. Right I had better go and take my pills before I forget yet again

I HAVE HAD ENOUGH

Just a short one today as so so so angry.  Hubby never takes me anywhere (think I may embarrass him now am disabled) but he took me to Asda.  I again did not get to look at anything I wanted as it is a quick march round.  He will NEVER let me take my electric wheelchair as it is too much hassle for him to get it in and out of car and would sooner I was in tons of pain trying to walk with crutches, with people staring at me cos I am panting and sweating so badly.  I bought the bloody chair to give me some independence yet am never allowed to use it.  I am so upset.  So frustrated.  It is as if he has turned into this horrible control freak instead of the loving caring man I married.  He does not think so but why should I have to ask if I can look at something.  I should not have to.  If I had my chair I could just wizz off and do what I want but he does not realise that me not having any independence is tearing me apart and no matter how many times I tell him he does not get it.

The only time I can go anywhere is if he takes me and when he does I have to be at his control.  It is so not fair.  All he would have to do is put chair in and out of car. Ok it would take him a couple of minutes each time BUT he would have a very happy wife.  I have so many presents to buy for xmas and have some money now to do it but cant as I am tied to his side.  (I cant pick things up to pay for them cos of bloody crutches).  My arms are so bad today I could not even lift the crutches off the floor and ended up dragging them.  He could clearly see this BUT never once even thought how I would be better off with my chair as it is an inconvenience to him.

I need to seriously think about my future and where it lays as I cannot keep going on like this.  I will be having a word with my OT and see if Social services can help me out a bit as I do think I am going to end up moving out and getting some independence as living with this controling person is doing my head in.  He is the only person I know that thinks cleaning the house consists of washing up what is right next to the sink and nothing else.  I still end up putting myself through agony to do it all as well as trying to work full time.  It just is so unfair

Another day/week in the fibro world

OOPS! Guess who forgot she had a blog.  How did you manage to guess right lol.

Anyway a bit of a catch up.  I finaly got to see a decent doctor with the list of symptoms I have had since long before Fibro.  Doc looked at how long I have been trying to get this massive list sorted and it is 4years and one month.  She could not believe it.  My symptoms were put down to (wait for this list lol)
1. Depression
2. Panic attacks
3. Hormones
4. Suspected Diabetes
5. Hypochondria
6. A Glandular problem
7. No Idea

I had the tests and they were all wrong. Doc knows I am not a hypochondriac as I put up with a lot more pain than most people plus even as she checked me over some of the symptoms were apparent.  High temp, low blood pressure, difficulty breathing, Phlegmy chest etc.
She has promised me I will have an answer or be on the way to an answer by Monday so fingers crossed.

I have had a hell of a time recently. I am getting depressed a bit as I dont go anywhere. A weekly trip to Asda is all my life consists of.  That leaves me in unbearable pain for the next 3 days.
My chest is so bad atm, my fever wont break at all and am constantly sat in puddles of sweat.  The pain wont let up at all, even with all the pills I am taking, so looks like I will end up on morphine in the near future.  Not the best drug to take as you have to inject (oramorph makes me throw up and the patches wont stay on when sweating this much). 

My mental state needs a pick me up. Just to be taken out for an hour or two, for lunch or to the market in my electric chair would be wonderful.  I have so much to buy for xmas pressies and never get out to get them so am worrying about that too.

I guess life just sucks at the moment.  All I seem to do is moan.  I joke about it alot too, to anyone within earshot.  I dont feel like being funny but it is easier than admitting how I really feel.  Who wants to hear that even with all these pills, I feel as if parts of my body are being torn through my skin, or that I feel so exhausted I would sooner pee myself than try to get upstairs?  Not what anyone wants to hear is it. 
I wake up everyday and hope today will be better, then the pain kicks in and I realise I cant see and know this is yet another day the same as the last.  I know my vision will come back and go and come back so have got used to that a bit although it still frightens me now and again.  I cannot remember the last time I had a 'good day'.  It feels as if this flare up is just going to last forever as has been going on for over 6 months without let up. 

I had hydrotherapy this week which has just made things feel so much worse and left me in a right old mess.  I had it 2 days ago and still not recovered.

I would give anything to swap with my hubby for one whole day actually make that two.  That way he will get the night time pleasure as well.  He might not be quite so flippant about it if he felt how I do.
He cant see inside me so has no idea how bad this makes you feel.  If he did he might be a tad more sensitive.  Its easy to say you understand but no one can.  I thought I could until I got it and believe me I had no idea how it feels to be in pain 24/7 7 days a week, even when sleeping you toss and turn as it hurts so much. I never realised what exhausted meant either and I have worked festivals where I have not slept for 3 nights and worked day and night.  I had no idea what complete exhaustion was until now.  Even talking wears me out as my body cannot cope with it.
Hubby thinks I am just ignoring him, I am not, it just takes too much energy which I dont have spare.

I would not wish this illness on anyone not even my very worst enemy as it really is that awful.  I had 4 kids with natural childbirth with 3 of them and still had not felt pain this bad. 

I do however have some really good news.  A friend bought me some lovely new crutches in BRIGHT PINK.  They are the ones I wanted that can only be bought from South Africa.  They have cheered me up no end as are much lighter than the NHS ones so dont put so much pressure on me.  They are still the trough crutches as cant use normal ones as my shoulders are too bad. Now I just need my eleccy wheelchair sprayed pink and I will be happy.

Sod it, if I need to use these aids they might as well be funky and fun.  Did I also say my hubby bought me a kindle so I always have books with me. How wonderful is that.  It also means I can change the size of what I am reading to extra extra big when my eyes are playing up. WOO HOO  I LOVE MY KINDLE.

Anyway better go as I have actually forgot what I came here to write in the first place lol

A catch up

Well today I managed to do some shopping at Asda with the help of hubby.  I decided not to use a wheelchair but my crutches.  Well what a state I looked.  Everyone else was in jumpers and coats and I was in a very small T shirt and sweating like a steam room.  I had water running everywhere and my hair was soaking wet.  You can imagine the stares I got from people.  It was so embarrassing. I was shuffling along trying to breathe as the pain was unbearable and people are so f***ing ignorant it is unreal.  I even had one guy try to push me out of the way as I was not moving fast enough for him.

I managed to get my photos done to apply for my blue badge although was a little red faced and damp.

I also had to do a small photo shoot to earn some money.  It did not work out as well as I hoped as today they wanted some silly positions that is just impossible for me.  I can stand and hold something or I can sit or lay down.  I cannot do anything else and they damn well know it.

The doctor who did my repeat prescription must be on drugs himself as he has only given me half the amount he should have so I will run out tomorrow and not due anymore till end of the month so somehow I have to try and get there as well. No idea how I will manage that one though.

I am going to start a diet tomorrow as hopefully I will lose some of this weight I have put on.  Not that I can even manage to eat a full meal.  I am also going to ring Disability Direct and get them to come and fill out my DLA forms as I there is no way I can hold a pen that long.  Have you seen the length of the form?  Talk about long.

Anyway I am now going to sit down and try and eat a stew hubby has cooked for me so fingers crossed I can manage it.

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

This is reality now

It has been a few days since I blogged as I have been in awful pain. It has been so bad I have been sick with it. Unfortunately being sick means I could not keep my pills down which made the pain worse which in turn made me even sicker. This sounds awful but I truly did not want to wake up when I finally managed to drop off for a few minutes.
It suddenly dawned on me the other night, that this is forever. I knew it was but it had not sunk in. It finally did and I do have to say I am really down right now.

I have tried to be very upbeat about this condition and tried not to let it get to me, even my doc could not believe I still managed to keep my sense of humour. That all went in a single moment and I came crashing down with a big bang. I am at rock bottom and dont know where to go from here. Is this it??? Is this all there is now? Stuck indoors in constant pain. Not even being able to make myself anything to eat. I do not want to live like this. I have always tried to be a good person so have no idea why God has chosen me for this. I have literally had enough now.

I am on Amytriptiline that is supposed to stop depression but right now it is not working. I have never felt so low. I am crying but even that hurts as I have really bad dry eyes so they sting like hell.
There is no food in the house at all. I cant just pop out and get some. Hubby is at work until 10.45pm tonight so no chance he will be able to get any. The dog needs feeding but I cant manage it so have to hope my son will do it, if he ever gets out of bed. I have no one around me to help. I could probably go shopping as Asda have scooters I can use BUT I cannot walk the full length of the car park and I do not have a disabled badge yet so cannot park near the doors. So today is another day of not eating. I would not mind but I dont lose weight. I am not sure if it is the pills or what but I can go days without food and do not lose weight. All that happens is I feel weaker.

People dont understand either. They seem to think as I look ok and am 'ONLY' in pain I can still cook. I cant. I have tried but I cannot hold a saucepan even without anything in it my wrists to refuse and give way. I cant even lift the bloody kettle. I feel bloody useless to be honest. I cant manage the simplest things that last year I used to moan about having to do and now I am desperate to do them.

The house is a tip. It is dirty and messy, hubby tries but he works alot plus does all the cooking when he is here and needs some time to unwind. He doesnt think of the fact that I have no clean clothes at all. He washes his own stuff, my son washes his but no one thinks of mine. If I do manage to get dressed, I have to wear dirty clothes half the time as I cant manage to get it to the washing machine.

I am sick of having to ask him to help  me so have not had a shower for a week, my hair is thick with grease and I look awful. I could just curl up and die. It would be preferable to this. I need to fill in my disability forms but I cant write as holding a pen hurts too much. At least if I had that I could pay someone to come and do some house work and some shopping and maybe my washing etc. God it would be so nice to have clean underwear as not been able to wear any for over a week.

Talking of disability forms I do not know where to start. The thought of having to fight to get what I need is just too much. Why do they make it so hard for those that need it. My doc can vouch for how bad I am. How he is constantly upping my tablets. How I can barely walk a few feet. My physio is more than aware of how badly I am affected so why cant their word be enough. They know me, they know how I am affected. Some stranger talking to me for half an hour really is not going to be able to judge how my daily life is affected.

I have to have another trough crutch to help me around my home as with one I keep falling over. Outside waking is near impossible. I have no spatial awareness and trip over my crutches, and anything else that may be on the ground. I think things are further away than they are so kerbs, dips in the path etc cause me to end up on my backside or face. This is it. This is my life. From now on I have nothing much to look forward to except more pain, more dizziness, more shortness of breath, more falling over, more sickness, more and more nights of laying in agony hoping for some relief, a little sleep or a moment of no pain.

I dont feel as if I have a right to be here anymore. I am a drain on my family. I cannot do anything for them. My hubby tries to show he loves me but come one, no one wants to spend their live with a useless lump who cannot even do the simplest of things. This has stopped being a marriage and is now a one sided relationship where I give nothing but just seem to take and take. My son is becoming wild as I no longer have the energy to punish him when he has done something wrong.

I have lost my way. I have a big list of things that need doing but I cant do them and the ones I can do, I forget. I forget family members birthdays, so they then think I dont care, I forget to ring them, my daughter is 17 and lives 200 miles away and I forget to ring her. How she must hate me. My older sons never contact me and I keep meaning to ring and see how they and their kids are doing but then I forget straight away.
I want my family around me BUT I forget to contact them. How bad a mum am I.

So this is it. My life. Not much of one is it. Not one you would want to be part of. Even this has taken me 2hours to write as I cant type well anymore as my fingers hurt and my brain keeps forgetting what I want to write. If it doesnt make sense then sorry but I keep getting my words mixed up and although this has spell check it does not find missing words. I write in little blocks so I know what I have wrote and can check it all bit by bit.

I admire these people who just carry on laughing. I thought I could be like that too but I cant any longer. MY life as I knew it is over. This is the life I have now. A life of staring at the tv, wishing I would sleep and never wake up.
No dont worry I am not going to kill myself, although I would be lying if I said I had not thought about it but I would not do that to my family. I know they would be better off but they would end up blaming themselves, always wondering if they could have done something to help me more or make it easier for me. I would not do that to them. They deserve far more than that. They just dont deserve being lumbered with me.
It is hard to decide which is the lesser of two evils but this is what I chose. My son will be leaving home in a couple of years anyway and then I will ask social services if they can move me on so my darling husband has a chance to find someone who can be there for him for a change. He deserves to be happy.

Anyway, I am tired now so am going to go and try to get upstairs, if not I will try and rest on the sofa. I will try to write daily but it is hard as sometimes I forget the blog is here. It does help being able to get it out how I am feeling as I am not one for talking about emotions so this is my release. I apologise for being glum and depressive but it is how I feel right now.

A little catch up

Well I wen to see the Doc. He did not want to discuss ME as he was more interested in my eye/gum infection. So two different lots of antibiotics for those. Plus he has upped my pain killers and Amytriptaline yet again. I am taking something like 12 pills at a time. It is silly.

Not blogged for a few days as have been in awful pain. The worst yet, some people call it a flare up. Myself I just think of it as bad days. The pain makes me feel sick, the sickness makes me hurt more so am stuck on a roundabout at the moment.

On a lighter note, i am feeling much happier in myself. I have realised that regardless of how hubby feels about my condition, it is me that is suffering it daily, not him and his opinion really should not matter.
The worse my symptoms become the more he whines about pins and needles or a pain in his back or how bad his cold is. If only for just one moment he could feel like I do day after day. he would soon shut up and realise a small bout of pins and needles or a small ache in his back or a simple cold is NOTHING compared to this. I would be grateful to feel like that.

I am trying to cheer myself up so am thinking of dying my hair. Have I mentioned that before as I cant remember. Anyway, I have ordered a hair colour stripper to see if that works. if it does I am going to dye my hair blond. I cant go to a hair dresser as the chairs hurts. I cannot lay backwards into the sinks and they take too long and would leave me in agony.
If I do it at home I can use my aids in the shower to wash hair and can sit in a comfy seat whilst waiting.
Plus if I cock it up and go tangerine colour I can send hubby out to buy me a dark dye really quickly :)
I have made many drastic hair disasters from seaweed green to orange stripped (blond dye really can cock up) I have also done some on purpose, Pink, orange and blond hair extensions. I thought they looked cool for all of about 2 minutes until I looked in a mirror. That was £300 down the drain.

I had acupressure off my Physio this week. I cried it hurt so much and have been really awful since then.
Have to go phone is ringing.

Toodlepip

A waffle

Bloody chest infection is back and not letting up at all. To make it worse I also have yet another gum infection. I cannot get to the dentist as hubby is working and I really am in no fit state to drive. Mind you my dentist does not want to see me anyway until I get some of the pain under control as he cannot touch me without me screaming.

I have just found out I have to pay £350 excess on my insurance. I am so angry. Why should I pay just because some woman was not paying attention and changed lanes without looking in front of her 1st. Grrrr

I have missed a few days of blogging because my hands were so bad I could not type properly. My brain could not think of anything to write either so was no use asking hubby to type for me. I had lots to tell you all but it seems my memory wants to pretend it is on crack and has lost all cognitive thought.

I have started to become very aware lately that my spatial awareness is not quite what I thought it was. Not good at all. I keep tripping over things that I think are a distance away from me. Steps are a killer. Trying to come down when you are not sure where the next step is hurts. Yep, you guessed it, I was practicing my stuntman moves this morning and rolled down the last 7 stairs. A lovely view for my neighbours as the blinds were open. I was only wearing a bathrobe as wearing anything in bed is burning torture. SO I am laid at bottom of stairs, head down and bare arse and girlie bits on full view. It took me over 15mins to get upright again. I dont know if anyone saw me but do not want to know either. My poor neighbours.

Well hubby at work so it is another day stuck indoors until he comes home. Thankfully he is finishing early today as I have Physio and need to be taken to hospital.
This bit is the joke. If you know Derby hospital (the new one) you will know how bloody big it is. A healthy person will take 10 - 15 mins to walk from one end to the other so someone like me would never be able to do it. So what do the designers do? They build the rehabilitation unit at the very far end of the hospital.

Ok they do have vehicles to drive you down but that again is embarrassing. everyone knows if you are on one of them you are disabled and the bloody driver is constantly beeping the horn so everyone looks at you. Trying to get transport back to the entrance though is a nightmare and my Physio normally has to take me herself which she gets quite annoyed about. so today hubby is taking me so at least he can push me there and back in my own chair.

I know I have paragraphs on here were there should not be but it is for me and other Fibro/ME sufferers who cannot read big blocks of writing. Sounds a silly thing doesnt it but when your main hobby has always been reading it is a big thing. I was an avid reader, I loved Terry Pratchett and was also a big fan of Patricia Cornwell. Unfortunately books are not written for people like me and I can no longer read a book.

I have found a site online that lets you read books on there that only have about 20 sentences to a page which means I can read a little now and then but it is frustrating as I tend to forget what I have read anyway. Arghh, I used to read a book in two hours and sometime 3 an evening. I cannot comprehend how now I cannot manage at all. I feel as if I am losing my mind and really do worry I have Alzheimer's and not Fibro.

The nightly vomiting is still there even though I have pills to stop sickness. I hate vomiting out of my nose as it burns. I have been suffering badly from dizzy spells as well. It is hard to describe as its not just a dizzy feeling. My head feels weak and dizzy, my insides feel as if they are shaking, i feel sick and have on a few occasions actually passed out. My sugar levels have been checked and it is not that so I have app at Docs on Friday and I am going to insist that he finds out what is wrong as I am sick of everything being put down to Fibro when I know it isnt.

I guess now Docs think as I have this condition they do not need to look for anything else as they can put everything down to it. Sorry but that is NOT going to happen anymore. For too long I have let them just ignore me basically. It has taken me years just to get them to realise I had something wrong as the symptoms were mild for quite a while. It was only when the pain got so bad that a doc sent me in to hospital as my temp was too high as well. I am no longer going to sit and act like everything they say is gospel as I now know that half of them just cannot be arsed doing their jobs.

To anyone who has a condition do not allow docs to put every other thing you have wrong with you under the same condition. It often is nothing to do with it.

I am going to fill out my Dla forms soon but am going to get disability direct to do them with me as they know how to fill them out. I have decided I am going to fight them all the way as I know damn well they will refuse it to start with. I may be in pain, I may be emotionally and physically drained but I will no longer sit down and let anyone walk all over me. I have read and re read their guidelines and I am entitled. I cannot walk more than 50ft at all. I cannot dress myself most days. I cant even lift the kettle let alone a saucepan, between the shakes and the weak arms I would end up in hospital. I tried it not long ago and spilt alot of boiling water. I was just lucky I was on my perching stool so my legs were out of the way or I would have had nasty burns.

Oops this turned out longer than I thought so I had better sign off and sit and stare at daytime TV, omg why cant they put anything decent on during the day.

A good day???

My hubby left me to sleep in this morning. I think it may have sunk in how bad I am as whilst I slept he scrubbed the kitchen from top to bottom for me. I got up at 1pm today. OMG how bad is that. I wouldn't mind but I am still worn out as even though I was sleeping it was not the right kind of sleep. It was very fit full.
Anyway I have spent the afternoon on the sofa doing absolutely nothing.

Hubby ran me a bath as I thought I would give it one more try just to see if I could actually manage it on my own. NEVER AGAIN!!! I got stuck and being so bloody minded I refused to call for help. I managed to get my foot around the plug and empty the water out so could dry myself and the bath before throwing myself over the side. Not a pretty sight I can tell you. I fell onto the floor with my fat arse in the air, BUT HEY, I did it by myself. I must admit I do now wish I had asked for help and am going to stick to my shower seat in the shower from now on.

Hubby is also cooking me steak & kidney puds for tea and I am so hoping I can eat them and keep them in as have a lot of trouble keeping food inside me.

I hopefully get my kidney test results tomorrow so I have my fingers crossed for that. Will also be making an appointment with the Doc regarding finding out if I have ME/CFS as well.

Ok just a quick one today as feeling a bit tired and sore although nowhere near as bad as the past week.

Toodle pip

Sorry todays blog is a rant

Oh Jeez!!! I think I have finally hit rock bottom. I have never felt such pain in my life. I know a lot of people say that but for it is actually true. Every muscle in my body feels as if a knife has been pushed in and is twisting round and round. This sounds terrible but even the muscles in my Ladybits are in agony.
I am exhausted. Not in the 'I have had a hard day' way or even the I have run a marathon way but more in the way of I have nothing left. I feel like a deflated balloon. My brain is worn out, my body has nothing in it. It is not as if I don't want to do anything. I do. I just physically cant. It is as if someone has drained the life out of me and left this shell.

Lordy Lordy, all I seem to do is moan. I would much rather have something happy or funny to write about but at the moment I have no sense of humour. It is really hard to see the funny side of anything when, if you do laugh, every part of you cries out in pain and then you are too short of breath to talk.

I had an awful night, tossing and turning and crying out on the odd few times I did get to sleep.
I was chatting online to a nurse this morning and she has advised me to go back as it sounds like I have an underlying problem as well as the FM. She thinks from my symptoms I may well have M E?CFS to go along side the FM. OH bloody joy. Now I have to go back to Doc and try to re list my symptoms and tell him what she has said.

Apparently FM alone should not affect me this badly, it also does not cause dizziness or vomiting or the nasal and visual problems I have, whereas M E/CFS could explain it.  I hope I find out one way or another as I do hate finally getting to sleep and then be woken with a mouthful of vomit and it gushing out of my nose. Urgh it really is horrible. Apparently it may also explain the over excessive sweating even when it is freezing cold.
So back to visit Doc again this week, as my Physio has said exactly the same thing. As they said, a lot of Docs once they get a diagnosis don't bother looking for anything and blame everything on the FM. Unfortunately my Rheumy diagnosed me with FM and I need to see someone else to be diagnosed with M E/CFS.
What a bloody palaver.  All I want is the correct diagnosis so I get the correct treatment and hopefully get rid of some of this pain.

Bad day

Having a very shitty day today. I have come to the realisation that my hubby really does not or cannot understand or even begin to understand just what I am going through.  There have been lots of issues over the past few years which has left me with no trust for him which could have been worked on. It sounds selfish but he was due to weeks off work for shutdown and I was looking forward to actually spending some quality time with him. Instead he has volunteered to work both weeks so he does not have to be at home. It is not for the money as he would have been paid anyway. He just does not seem to want to be around me anymore since I have become this way. So I have spoken to social services to see what my options are on getting a bungalow to rent and they are coming to see me next week.
I dont really see any other option unless things sort themselves out, which to be honest I can no longer see happening.

I am at work today and trying to force myself into corsets and 6inch heels has left me in absolute agony. The pain is so bad that I feel sick. yet again I have not been able to eat due to the pain and have come to realise I can no longer work. I did not want to give up as the money is fantastic and the work is so easy. I just sit still or lay still with the odd movement into different positions. Its the getting into the outfits that has become unpractical. Somehow I dont think I will get paid for shots of me in a slobby bathrobe and granny slippers. Although it may well be worth checking around as I now know there is a market for many different fetishes and the old slob look may well sell.

As you can tell I am on a bit of a downer today as feel so isolated and alone and am not really one for posting my problems on forums as I just feel as if I am always moaning

off work again

Oh God, I feel terrible today. Its half past 10 and I have just managed to get out of bed. On top of my condition I also have a cold which seems to have now turned into a chest infection. All I can say is I must have been a really evil person in my past life. Ghengis Khan springs to mind. Either that or him upstairs is having a bloody great laugh at my expense. This blog will take a little longer to write than normal as my fingers feel almost numb, tingly and it is like trying to type with balloons stuck on the ends of my wrist.
My darling Hubby is trying so hard to understand but he just cant. I can see the look on his face when I say I cannot possibly work today (I am self employed so its not a problem that way). Its a look that says I don't know why as you normally manage. Yeah right like I look suitable for my work. I am a full figured lingerie & fetish model. Try looking sexy when your whole body feels like lead, you have chronic shakes, cannot stop sweating (under lots of lights it is even worse). There is also no way on earth I could put my feet into 6 inch heels, lets alone manage to pull on an outfit made of PVC. Ok so mostly they have people to dress me but the thought of anyone touching my skin even makes me tremble in fear as even the softest touch feels as if someone has a blow torch against my skin.

Anyway, I made it to the sofa and took my pills. Hubby has gone to shop for bits I will need whilst he has gone and I thought I had better go online and sort out all my emails etc. I could not even read them as have really blurred vision so though I would blog instead.

Oh. I forgot to say what happened yesterday. I am so embarrassed and thankfully no one I know reads this so can put it. I wet myself. That's right you did read it correctly. I needed a pee and being the stubborn old bat I am, I decided I was going to use the toilet and tried to get upstairs quick enough but was in so much pain I did not quite make it in time. How bad is that. I can laugh now but I was so upset at the time and still have not told hubby.

I thought I had perhaps passed the grieving stage and was now at the anger stage but I was wrong. I am still grieving. I want the old me back. The one who worked every hour God sent, Who was always popping into town shopping, who loved her life and although hated it always made sure the house was clean, the girl that used to go out with the lads and be the life and soul. I cant even tolerate the smell of alcohol now let alone manage to go out.  Hubby took me clothes shopping the other day and I realised clothes shops are NOT designed for an electric wheelchair and after just one shop I was worn out and wanted to go home.

The only thing I still do the same is get my nails done. I do not feel human without them. I cant even get my hair done in a salon as it hurts to sit there for that long so I have took to just cutting my own fringe.

I am so bored. How do people voluntarily stay home and not work? Day 4 of daytime TV and I want to cut my own throat.
I know alot of people don't understand this condition and often say to me, "it must be great never having to clean u, do the washing, cook dinner etc and to be able to lounge on the sofa or in bed all day". If only they knew. Yes I am at the moment 'lounging' on the sofa. I cannot stay in one position for long as the pain gets so bad. Moving position causes even more pain. I cant get a drink when I am thirsty and pee myself trying to get to the loo. It is also great fun not being able to go to bed and sometimes having to sleep on a blow up bed in the lounge. brilliant, just what I always dreamed of. Idiots. Actually that is harsh, they are not idiots they just don't get it.
My sex life has all but disappeared as even a gentle hug is agony. 

I do still work if I have an easy job on that I will be capable of. Basically ones that are sitting or laying down. otherwise I am housebound. It is not a life as such anymore. The one thing I used to love to do in my spare time was read. I would read anything. Now I read part of a page and by the time I reach the bottom I have forgotten what I just read.

take aways are nice BUT who wants to have to eat them 5 days on the trot every fortnight as hubby is on late shift. I don't so last night I got son a takeaway and I went without food again.

I am going back to see the Doc to see if I can try Lyrica as so many others seem to find this works a little bit. He will probably say no though as I have to keep having blood tests as there seems to be something wrong with my kidneys and instead of telling me what is wrong they just send me for more tests. Arrghh!!!
Ah well that is my morning blog/rant finished for now. If anything interesting happens in the day, I will come back on and let you know.

hopping frog, thankyou cat

Well I finally managed to drag myself downstairs before 11am. Hooray for me. Feel as if I have flu, although is probably just a cold, it just knocks me for six now. Hubby packed off to work after he had been to shop for everything I need for the day, Bless him.
Sat updating my blog when in comes neffie, one of our serengeti cats with a bloody great Frog/Toad in her mouth. ARRGHH. I have a bit of a phobia about these creatures and become even more short of breath and very sick when they are near me. Neffie proudly comes right up to my feet with this thing squawking in her mouth (did you know they could scream, I didnt). She is mewing at it as it wouldnt move and she wanted to play. I am by now ringing my hubby almost in tears (no help he just laughed). Bearing in mind I can hardly move today, I grab the broom and a towel and try and shoo the bloody thing out. Soon as it moves neffie once again leaps on it, picks it up and proudly walks back to me. Now I am as far back on the sofa as I can be shooing her away with the broom, trying not to be sick or cry. Finally I get her to take it back outside and she took it next door. 
Will serve them right as they are always feeding her (she has dodgy tummy so should not be fed treats etc). They can sort out this bloody great big frog/toad as no doubt my darling cat will dump it into next doors house somewhere and forget about it if she sees something more interesting, like a fly.

I am now on the sofa, wishing I could get back upstairs but cant. I want to cry but that wont help and will make me feel worse. I have almost lost my voice so cant even shout for my son to help me and the wonderful 15yr old that he is, he has his phone on silent.

Hubby is on lates today so unless a miracle happens and my son cooks tea, (more chance of me becoming a prima ballerina) then it is takeaway again for tea tonight.
I am sure if I miraculously got better the local take aways would go out of business. It does not matter if we ring the chinese, the indian or the local burger/kebab bar, they all know my address and what I am going to order.

I have been like this now for 5months and each day seems to feel worse than the last. I know it is trial and error until they can find the right meds to ease the pain a bit but right now it feels as if it will never happen.
I have been told to file for disability but I do not know if I have the energy for that right now as I have been told I will have to fight to get it even though I am one of those that really actually deserve it.
How is that right? I know lots of people who claim it yet they can all walk and over half of them work as bloody builders! Yet me, who can hardly walk at all and is practically housebound has to fight to get it.
I think I may need to get someone to fight for me as I do not have the strength at all.

I am dying for a wee (sorry) but really hate using the commode and just want to use the normal loo for a change. I also need a shower but as hubby is on lates and my friend is on holiday for a week that wont happen today.

I never understood before how much in life I took for granted or how much I wasted what I had. To be able to dress myself without pain, breaking into hot sweats (missed that off the list earlier) and feeling weak and exhausted would be wonderful. I have had to buy new clothes, with elastic waist so can get skirt/trousers on, and tops with no buttons or zips so it is easier for hubby to slip onto me. I cant do it as cant raise my arms high enough.
OH if anyone out there wants to design a large cupped bra that is easy to put on I will definitely buy it as most days I have to go bra less. For those of you with nice petite breasts you may wonder what the problem is, well for us with whoppers it is a major problem, it causes back ache,we get sores under them where the skin rubs so a bra is a necessity.

Anyway I had better sign off as alarm has gone so it is pill time. I am surprised I dont rattle the amount I throw down my throat everyday.  Catch you later on x

A bit about my condition

Most people have either never heard of Fibromyalgia and Polyarthralgia and those that have seem to think it is all in the mind. Well believe me my mind could never have been this creative or sadistic. In fact I doubt many peoples minds would be. I will list a few of the symptoms I have below so you can see what I mean.

Severe pain in every muscle and joint in my body.
Inability to move joints easily.
Limbs feel as though made of lead.
Headaches,
dizziness
pins and needles over limbs
muscle cramps in arms legs, neck and stomach,
Severe insomnia (by severe I mean lucky to get one hour a night)
chronic fatigue. (Imagine every day feeling as if you have swine flu you are that exhausted)
Muscle spasms. not little jumps but where your whole arm or leg just flies out on its own.
Inability to use hands properly
Cant lift things as wrists give way
Unable to walk more than 20ft and thats with a trough crutch as you cant use normal crutches.
Falling over all the time as you seem to have lost all co ordination or your joints just buckle.
Not being able to wash yourself as cant lift arms, need help to get into shower and wash even with bath seat and hands rails.
Stairs are my worst enemy and even with extra rails can take half an hour or more to get up them to go to toilet, which is not great considering irritable bowel is part of fibro.
Then we get to FIBROFOG. OMG where did that come from. I was always miss organised, miss perfect speller and the one who could remember just about everything. Now, I forget to take my pills, dont ask me to remember your name as it wont happen, in fact in the doctors the other day they were calling MY name out and I thought I recognised it but did not realise it was me. You can ask me to do something but you can bet your arse I will forget to do it. My life consists of yellow post it notes everywhere just so I can remember anything.
I can rarely drive now as am rarely well enough to feel safe behind the wheel so am pretty much housebound until my hubby is home from work. I do have an electric wheelchair but live at the bottom of a hill that is too steep for it to get up. I also have a wheelchair that he can push me in but again I have to rely on him.
Thank god for my Occupational therapist and the bits she provided for me or he would have to wipe my bum too :)
The list above is just SOME of the symptoms of this condition and there are many more but I am having a fog day so will tell you about them when I remember. Thank god for spell check or none of this would make sense to as even basic things like spelling or getting the words right is now beyond me. Ok from now on my blogs will be about my day and how it is affected. I just felt I needed to get this out of the way first, so that you had a bit of understanding about what I will be blogging about and perhaps understand if some of what I write does not make sense.

Hello & welcome to my 1st ever blog

Hi I am Nette a 42 year old woman with a passion for the life I had until recently. I have been told writing a blog may help me come to terms with the life I have now left behind me. So here goes.
Be prepared for alot of whinging, some moaning and hopefully some funny bits interspersed throughout.
I have been suffering from unknown tiredness for many years. My mum just said I was lazy, mind you so did my husband. I have also been in and out of hospital for severe pains of unknown origin. I have had unnessessary knee surgery, arm problems, stomach pains etc all that have added to my file of hyperchondria. Funny how now the Docs cannot do enough for me. I have had tests to see why when everyone is cold I am in barely any clothing and sweating like a pig. Yes I know Ladies are supposed to perspire but believe me I was sweating.

I guess you could say that at the moment I am still going through the grieving period. Sounds silly doesnt it. grieving because I have a condition. It is alas true. I am grieving for the me I have lost. I was the life and soul. In the village I live the guys always say it is only a fun night out when I am there. I suppose I did liven them all up as I loved nothing more than a few drinks, a dance and to partaaayy!!!.

Now, I cant drink full stop. even the smell of alcohol makes me vomit. I am also not much of a party girl considering I can only walk for a minute or two before I am in agony or more embarrassing I fall over.

I am grieving the fact that I cant even pop to the shop anymore. I cant even get to the loo very easily. I have to rely on my hubby for most things. Things you take for granted, like getting a drink or something to eat.

Ok, thats enough for now as my hands hurt so much and I have spent 40mins just checking I have spelt everything correctly as my mind is all fuddled today. I will be back tomorrow to give you a little more insight into my life before I start blogging about daily things.

If you have read this then thankyou for being so patient and reading my ramblings.