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
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