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
Sunday 25 September 2011
Tuesday 20 September 2011
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
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
Saturday 17 September 2011
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
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
Friday 16 September 2011
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
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
Sunday 4 September 2011
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.
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.
Subscribe to:
Posts (Atom)
Posts
