The increase in my morphine patches has been making me more and more tired recently and so i have been finding it more difficult to concentrate i dont know if this is because of the morphine or because of the fibromyalgia or because of the morphine.
The symptoms seem to be progressing and taking more of my life with it; taking more of what used to be my life and ruining what is left of me.
I have been struggling with my hands. to pick up and hold objects in my hands, yesterday i wrote a note to a friend on a piece of paper the note was ledgiable but looked like a 7 year old child had done it i had to hold the pen in my fist and steady my hand with the other hand due to the shaking it brought me to tears i hate being reduced to this.
On a good note the Incapacity people have written to me saying i dont have to send sick notes for a year and my benefits have gone up to £100 a week. I have just completed a Disability Living Allowance form and will post it when i move to ouw new house very soon. We are due to get the keys at the end of the week. As we have bought a share of the property we should be able to adapt the property to my needs, the only thing that worries me is that it is on the first floor; i am hoping that my legs dont get any worse.
My vision is getting more blurry i think i need some new glaases i dont know if this is due to the fibro, i seem to attribute everything to it but even with my glasses on i struggle to see past the blurriness.
Monday, 30 June 2008
Thursday, 19 June 2008
GP's Visit
Its been two weeks since i saw the Rheumotologist and as i had hoped the diagnosis letter had reached my GP, finally my GP has information that i am diagnosised its only taken almost a year!
Shes decided for the moment not to play with any tablets as she does not want to mess up the balance of the medication, But recently i have been in more and more pain.
I have spent many nights waking up screaming in pain; my legs seem to have become very sensative to touch and pain. My nights are spent awake unable to sleep because of the pain in my head and my body and i dont like taking the morphine tablets as i end up more irratable and itchy and the amount of morphine tablets i have a month are limited to only 14 and i never know if a worse episode of pain is just around the corner and will warrent them more.
My GP has upped my Morphine patches to 20mg(over 7days) 20mcg ph from 10mcg ph which should help but it doesnt start for a week as she wants me to write a "pain diary" of how much pain i am in and what times and where etc... how are you suppost to write a pain diary when you are in constant pain!!
I have also had an occupational health meeting with a private doctor to do with the company that technically i still work for, although i dont think i will still be employed with them for much longer i dont think they can simply fire me as i have a long term disability, i am not sure what will happen to be honest will have to wait and see.
The date looms closer and closer to the exchange date of buying our new flat which seems to be causing alot of stress which really doesnt seem to be helping my fibro justt making me more frustrated and irritable and i am having problems sleeping due to this which is having a knock on effect with everything else. We will see if i live to survive the move.
Hopefully after we move now that my GP has my diagnosis and understands the situation we can go about claiming for Disablity Living Allowance which may bring in a little more money, maybe a blue badge, possibly a carer, and some discounts with travelling a few other things but we shall see.
Also after the move will have to see about seeing the Occupational Therapist, this month at the Fibro meeting they are having an OT visit so we should be able to find out lots of information from that and hopefully they will be able to adapt the flat somewhat when we move in to make things a little easier for me.
Hopefully Things can only get better surely things cant get much worse!
Shes decided for the moment not to play with any tablets as she does not want to mess up the balance of the medication, But recently i have been in more and more pain.
I have spent many nights waking up screaming in pain; my legs seem to have become very sensative to touch and pain. My nights are spent awake unable to sleep because of the pain in my head and my body and i dont like taking the morphine tablets as i end up more irratable and itchy and the amount of morphine tablets i have a month are limited to only 14 and i never know if a worse episode of pain is just around the corner and will warrent them more.
My GP has upped my Morphine patches to 20mg(over 7days) 20mcg ph from 10mcg ph which should help but it doesnt start for a week as she wants me to write a "pain diary" of how much pain i am in and what times and where etc... how are you suppost to write a pain diary when you are in constant pain!!
I have also had an occupational health meeting with a private doctor to do with the company that technically i still work for, although i dont think i will still be employed with them for much longer i dont think they can simply fire me as i have a long term disability, i am not sure what will happen to be honest will have to wait and see.
The date looms closer and closer to the exchange date of buying our new flat which seems to be causing alot of stress which really doesnt seem to be helping my fibro justt making me more frustrated and irritable and i am having problems sleeping due to this which is having a knock on effect with everything else. We will see if i live to survive the move.
Hopefully after we move now that my GP has my diagnosis and understands the situation we can go about claiming for Disablity Living Allowance which may bring in a little more money, maybe a blue badge, possibly a carer, and some discounts with travelling a few other things but we shall see.
Also after the move will have to see about seeing the Occupational Therapist, this month at the Fibro meeting they are having an OT visit so we should be able to find out lots of information from that and hopefully they will be able to adapt the flat somewhat when we move in to make things a little easier for me.
Hopefully Things can only get better surely things cant get much worse!
Friday, 6 June 2008
At last... i see a Rheumatologist
In Decemeber i saw a Neurologist who diagnosed me with Fibromyalgia and i have also seen the Neurologist nurse not so long ago.
My General Doctor (GP) has been writing to my Neurologist to get a copy of the Diagnosis but he refused to send a copy of it, maybe because technically he shouldnt had diagnosed me as Fibromyalgia is not his field i dont know.. But now my Neurologist has retired and i have passed onto another Neurologist.
Now my General Doctor has her hands tied and is limited on how much she can help me without seeing a copy of the diagnosis sheet also a specialist about fibromyalgia knows more about the medications and knows how to help me.
soooo she refered me to the Rheumatologist the appointment took about 6-8 weeks after she refered me to come through but it did come through and i saw him on Tuesday 3rd June.
He was very nice and started by asking what medicines i was on, then a list of conditions i had and what problems i had. Then i had to go sit on a couch whilst he prodded and poked me which was quite uncomfortable but i tried not to complain too much at the time as i knew he was only doing his job. He did my blood pressure and listed to my heart and wanted me to try and move my arms into certain positions. And then we went back into his office. He said it was defiently Fibromyalgia, which of course we knew already but i did have a little niggling feeling maybe it was something as i thought maybe the Neurologist before didnt know what he was talking about.
We talked about medications he could put me on but my Amitriptalyne would need to come down first. He is also going to refer me for Physio.
I am due to see him again in about 4 months but i left there feeling good hes going to write to my GP and i have an appointment to see her in 2 weeks by which time she should have recieved the letter. Hopefully after that i may be able to apply for Disablity Living Allowance.
Feels like i am getting somewhere now.
Also we are in the the middle of buying a house, the main reasons are because we are renting at the moment and we wanting to buy so that we can put in adaptations, this months Fibro Group meeting has a Occupational Health person coming to talk about adaptations so maybe we can get some numbers and help from it.
As i said... it feels like i am getting somewhere.
My General Doctor (GP) has been writing to my Neurologist to get a copy of the Diagnosis but he refused to send a copy of it, maybe because technically he shouldnt had diagnosed me as Fibromyalgia is not his field i dont know.. But now my Neurologist has retired and i have passed onto another Neurologist.
Now my General Doctor has her hands tied and is limited on how much she can help me without seeing a copy of the diagnosis sheet also a specialist about fibromyalgia knows more about the medications and knows how to help me.
soooo she refered me to the Rheumatologist the appointment took about 6-8 weeks after she refered me to come through but it did come through and i saw him on Tuesday 3rd June.
He was very nice and started by asking what medicines i was on, then a list of conditions i had and what problems i had. Then i had to go sit on a couch whilst he prodded and poked me which was quite uncomfortable but i tried not to complain too much at the time as i knew he was only doing his job. He did my blood pressure and listed to my heart and wanted me to try and move my arms into certain positions. And then we went back into his office. He said it was defiently Fibromyalgia, which of course we knew already but i did have a little niggling feeling maybe it was something as i thought maybe the Neurologist before didnt know what he was talking about.
We talked about medications he could put me on but my Amitriptalyne would need to come down first. He is also going to refer me for Physio.
I am due to see him again in about 4 months but i left there feeling good hes going to write to my GP and i have an appointment to see her in 2 weeks by which time she should have recieved the letter. Hopefully after that i may be able to apply for Disablity Living Allowance.
Feels like i am getting somewhere now.
Also we are in the the middle of buying a house, the main reasons are because we are renting at the moment and we wanting to buy so that we can put in adaptations, this months Fibro Group meeting has a Occupational Health person coming to talk about adaptations so maybe we can get some numbers and help from it.
As i said... it feels like i am getting somewhere.
A Trip to London
A week or so ago i went to London on a day trip, i didnt realise how much my fibro would limit me but it did. I caught a train to Brighton didnt really have any problems well not really with my Fibro there was a few problems with the train which broke down but nothing which overly effected my illness.
I met up with some friends at Brighton, one of which who has Fibromyalgia but who is at a different stage and is able to walk usually with one walking stick and when we went to London had decided to take two which was a good idea.
We caught the train to London Victoria again no problems, i had taken my 11 year old sister with me too mainly as the reason we were going to London was to go to see the Doctor Who Exibition at Earls Court. My Sister although she is very young is very aware of things that cause problems with disabled people as her mother (my stepmum) has MS.
When we got to Victoria to get to Earls Court, i had planned a route that involved going on several trains and that would involve hardly any walking which of course would be good for myself and my friend with Fibro but the person who was leading us wanted to go via the underground and he believe the overground direct route to be unreliable.
So we set off on the underground. We went on several escalators which took a little bit of balancing to begin with with my crutches but i soon got the hang of it. Then we had to walk down many stairs, i find walking down stairs not too difficult but i am still rather slow because of pain in my legs and hips. My friend was very slow and seemed to be suffering alot too. Once we got down there an underground train came but it was packed and it waws obvious that there was not going to be any seats so we stayed on the platform and waited for the next one.
After the next underground train came we took it and several of us managed to get seats and we travelled stations. At the destination we got out off the train there wea a lift and we managed to get to the surface, to get to the front of Earls Court there was alot of walking and by the time we got there i was in a great deal of pain, i contemplated taking one of my morphine patches, i already had a morphine patch on. But didnt want to take a morphine tablet as this would make me drowsy and would make me not enjoy myself for the rest of the day.
We collected our tickets and people went to the bathroom i waited as i couldnt deal with anymore stairs and sat down on a chair to rest then we went for a walk to get some food. After which we went back to Earls Court for our walk around the Exibition.
We spoke to the guide who told us to get to the exhibition there was stairs we advised him there was a lift and he showed us too it and we started our walk around the. The Doctor Who Exhibition was amazing, although it was quite a walk, and i became very tired and overheated, i took many photos which was quite difficult whilst on two crutches but after slowing down and much resting we completed it.
After we had finished the Exhibition we tried to head back to the underground but i had hurt my knee more and the walking had tired me very much all my joints hurt. So we made a decision to take a taxi to the Doctor Who shop which was own by a friend of several members of the group. The taxi ride was good as we got to see alot of sights and have a good rest.
After the shop we headed back to the underground, throughout the trip i could not walk through the normal ticket barriers and had to walk through the disabled ones, some of the staff seemed lazy and unwilling to unlock them to let me through, My sister complained to them although she is only 11 years old!
We managed to get back to London Victoria and get some more food and head back home.
I must admit there was alot more walking involved than i had thought there would be, aalso i would have thought the underground would have been more accessable for disabled people i struggled on crutches i dont know how people in wheelchairs would have copied.
The next day i was exhausted and found myself covered in bruises i dont know if this is part of my fibro or because of all the people passing by.. i do bruise easily normally.. i do think it will be a long time before i work up the energy to go to London again!
I met up with some friends at Brighton, one of which who has Fibromyalgia but who is at a different stage and is able to walk usually with one walking stick and when we went to London had decided to take two which was a good idea.
We caught the train to London Victoria again no problems, i had taken my 11 year old sister with me too mainly as the reason we were going to London was to go to see the Doctor Who Exibition at Earls Court. My Sister although she is very young is very aware of things that cause problems with disabled people as her mother (my stepmum) has MS.
When we got to Victoria to get to Earls Court, i had planned a route that involved going on several trains and that would involve hardly any walking which of course would be good for myself and my friend with Fibro but the person who was leading us wanted to go via the underground and he believe the overground direct route to be unreliable.
So we set off on the underground. We went on several escalators which took a little bit of balancing to begin with with my crutches but i soon got the hang of it. Then we had to walk down many stairs, i find walking down stairs not too difficult but i am still rather slow because of pain in my legs and hips. My friend was very slow and seemed to be suffering alot too. Once we got down there an underground train came but it was packed and it waws obvious that there was not going to be any seats so we stayed on the platform and waited for the next one.
After the next underground train came we took it and several of us managed to get seats and we travelled stations. At the destination we got out off the train there wea a lift and we managed to get to the surface, to get to the front of Earls Court there was alot of walking and by the time we got there i was in a great deal of pain, i contemplated taking one of my morphine patches, i already had a morphine patch on. But didnt want to take a morphine tablet as this would make me drowsy and would make me not enjoy myself for the rest of the day.
We collected our tickets and people went to the bathroom i waited as i couldnt deal with anymore stairs and sat down on a chair to rest then we went for a walk to get some food. After which we went back to Earls Court for our walk around the Exibition.
We spoke to the guide who told us to get to the exhibition there was stairs we advised him there was a lift and he showed us too it and we started our walk around the. The Doctor Who Exhibition was amazing, although it was quite a walk, and i became very tired and overheated, i took many photos which was quite difficult whilst on two crutches but after slowing down and much resting we completed it.
After we had finished the Exhibition we tried to head back to the underground but i had hurt my knee more and the walking had tired me very much all my joints hurt. So we made a decision to take a taxi to the Doctor Who shop which was own by a friend of several members of the group. The taxi ride was good as we got to see alot of sights and have a good rest.
After the shop we headed back to the underground, throughout the trip i could not walk through the normal ticket barriers and had to walk through the disabled ones, some of the staff seemed lazy and unwilling to unlock them to let me through, My sister complained to them although she is only 11 years old!
We managed to get back to London Victoria and get some more food and head back home.
I must admit there was alot more walking involved than i had thought there would be, aalso i would have thought the underground would have been more accessable for disabled people i struggled on crutches i dont know how people in wheelchairs would have copied.
The next day i was exhausted and found myself covered in bruises i dont know if this is part of my fibro or because of all the people passing by.. i do bruise easily normally.. i do think it will be a long time before i work up the energy to go to London again!
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