Yesterday i had a letter one i have been waiting for since june. I finally got DLA! (Disability Living Allowance) and they are backdating the payments to June. I have got the Higher rate of mobility which is about £47 a week and Lower rate care which about £18 a week. I dont know how often the payments are or when i will be getting the backdated money i will be calling them monday to sort everything out. But it is a big victory! I have been looking at a website http://www.enabledpeople.co.uk/ which has alot of information on what people on higher rate mobility are entitled to ( Eg mobility cars, carers passes at the cinema, bus passes, blue badges for car, train passes etc) so i will be making alot of phone calls monday!
The headaches have been getting bad but i have been trying to deal with them as much as possible, i have had to take a boosted dosage of 175mg of amitriptalyne every couple of days. I am about to go to 75mg and 100mg every other day slowly getting there! just wish the pain wasnt increasing!
Sunday, 30 November 2008
Wednesday, 19 November 2008
Lots going on
I have recieved a letter from the other hospital which my GP wrote to saying that i have been accepted by the pain clinic there, however the appointment is not till the end of January 2009 which is a little while away yet.
I am continuing to reduce the Amitriptaline down but due to the pain i am having quite a few sleepless nights and i am becoming edgy in the day; the light is becoming more difficult to deal with and i am having to spend more time in bed and i am becoming more of a recluse. Simon is even having to record tv shows onto dvd (And wiping them after i have watched them) because i am too tired to watch them with him and also our main tv is to bright. So i am having to watch them on my laptop which i can reduce the brightness down quite a bit and also i can watch them in bed.
Once i have reduced the Amitriptaline i can start the Gabapentin and see if that helps my muscles. My GP said that i dont have to come off of the amitriptaline altogether but i would like to as it is one less drug in my system but it depends whether or not i can adapt/cope with the symptoms of the headpain; admittedly most of the symptoms are blocked by the Topiramate but we will have to see what happens
The Hydrotherapy pool is being resurfaced; i was told this was going to take two weeks at at the time we were told this was happening we arranged another appointment however it has now been 5 weeks since i had my last Hydro session. On the NHS you only get 6 sessions and i am pretty certain that after the 5 week break i have now had that the work we did in the previous 2 sessions has now gone and that any muscle tone will have to be worked back up again but i only have 4 sessions left! After the 4 sessions i have left i will be going back to physiotherapy.
My hands and legs are still hurting alot, Simon is still having to sleep in the spare bedroom quite a bit for fear of touching me the night or bumping into me. I need to contact the Occupational Therapist again to see if they can give advice about a few items around the home to help.I am still struggling with holding knives and forks but tend to use a spoon now as its easier to use one item rather than too. Luckily if we do go out to eat around friends/family etc they understand so it has become less embarrassing but i still find it a little so especially if i have to get Simon to cut up my food.
I have had a few falls over the last few weeks and i am having to use the crutches around the house more, i use the crutches all the time when i go out, but not all the time at home as i use the walls for support occasionally.
My GP when i saw her last week advised me she had completed the DLA form and sent it back along with reports from all my consultants, several days ago i called the DLA and they told me they had recieved it and were looking at my case so hopefully i should get a result soon. *Crosses Fingers*
So with having to spend more time in bed because of the pain and Simon having to sleep in a different room alot of the time i am feeling a little isolated but i suppose thats what happens with fibromyalgia. Our Cat Timmy gives me some comfort its amazing home comforting animals can be.
I am trying to keep my head up and not let it get me depressed i think it gets Simon down if he sees me low which in turn if i see him low makes me feel down. We try to do what we can to keep things as "normal" as we can he takes me for drives after dark so i can get fresh air and i go see my parents and my sisters and my niece and nephews. I have learnt not to let the fibromyalgia beat me. Before had fibro i was on antidepressants for various reasons and the amitriptaline although i use it for pain is an antidepressant, i am looking forward to coming off of it (or being greatly reduced) for the antidepressant factor.
I am continuing to reduce the Amitriptaline down but due to the pain i am having quite a few sleepless nights and i am becoming edgy in the day; the light is becoming more difficult to deal with and i am having to spend more time in bed and i am becoming more of a recluse. Simon is even having to record tv shows onto dvd (And wiping them after i have watched them) because i am too tired to watch them with him and also our main tv is to bright. So i am having to watch them on my laptop which i can reduce the brightness down quite a bit and also i can watch them in bed.
Once i have reduced the Amitriptaline i can start the Gabapentin and see if that helps my muscles. My GP said that i dont have to come off of the amitriptaline altogether but i would like to as it is one less drug in my system but it depends whether or not i can adapt/cope with the symptoms of the headpain; admittedly most of the symptoms are blocked by the Topiramate but we will have to see what happens
The Hydrotherapy pool is being resurfaced; i was told this was going to take two weeks at at the time we were told this was happening we arranged another appointment however it has now been 5 weeks since i had my last Hydro session. On the NHS you only get 6 sessions and i am pretty certain that after the 5 week break i have now had that the work we did in the previous 2 sessions has now gone and that any muscle tone will have to be worked back up again but i only have 4 sessions left! After the 4 sessions i have left i will be going back to physiotherapy.
My hands and legs are still hurting alot, Simon is still having to sleep in the spare bedroom quite a bit for fear of touching me the night or bumping into me. I need to contact the Occupational Therapist again to see if they can give advice about a few items around the home to help.I am still struggling with holding knives and forks but tend to use a spoon now as its easier to use one item rather than too. Luckily if we do go out to eat around friends/family etc they understand so it has become less embarrassing but i still find it a little so especially if i have to get Simon to cut up my food.
I have had a few falls over the last few weeks and i am having to use the crutches around the house more, i use the crutches all the time when i go out, but not all the time at home as i use the walls for support occasionally.
My GP when i saw her last week advised me she had completed the DLA form and sent it back along with reports from all my consultants, several days ago i called the DLA and they told me they had recieved it and were looking at my case so hopefully i should get a result soon. *Crosses Fingers*
So with having to spend more time in bed because of the pain and Simon having to sleep in a different room alot of the time i am feeling a little isolated but i suppose thats what happens with fibromyalgia. Our Cat Timmy gives me some comfort its amazing home comforting animals can be.
I am trying to keep my head up and not let it get me depressed i think it gets Simon down if he sees me low which in turn if i see him low makes me feel down. We try to do what we can to keep things as "normal" as we can he takes me for drives after dark so i can get fresh air and i go see my parents and my sisters and my niece and nephews. I have learnt not to let the fibromyalgia beat me. Before had fibro i was on antidepressants for various reasons and the amitriptaline although i use it for pain is an antidepressant, i am looking forward to coming off of it (or being greatly reduced) for the antidepressant factor.
Tuesday, 11 November 2008
After speaking to the DLA (Disability Living Allowance) people they said they have sent out several forms to both my GP and my consultant i have chased both of them and my doctor has finally responded to them so hopefully i should hear something soon. Whether it is good news or bad news i dont know but if i am refused i will appeal against the result. The claim has been going on since June now its ridiculous i shouldnt have had to chase this up so many times when i am sick and feeling this bad.
I am trying something new that someone at the Fibromyalgia group suggested to me. Growing Sprouts. It sounds really odd but basically you grow beans and seeds till they sprout and then eat them because at this stage they have alot of vitamin and minerals and can help medical conditions. I have tried the Brown and Green Lentils and i must admit that i am feeling like i have more energy. The link i am buying the Sprout products from is : https://www.livingfood.co.uk/ the first page also has the theory behind it all. I also spoke to my GP yesterday and she said that it can not do me any harm and to continue trying it.
I have not had any Hydro for three weeks now as the pool is being resurfaced, i feel like i am back where i started and i am sure that when i start back its going to hurt like hell afterwards like it did after the first session. I only have four sessions left and then i go back to the Physio Nick and see what happens from there.
When i saw the GP she advised me that she had a reply back from the pain clinic and that they could not help me because they did not have the means to help me. The GP seems to think that the hospital she refered me to are confused because of my first referal was by the psycharist and she is refering me to a different hospital.
I am trying something new that someone at the Fibromyalgia group suggested to me. Growing Sprouts. It sounds really odd but basically you grow beans and seeds till they sprout and then eat them because at this stage they have alot of vitamin and minerals and can help medical conditions. I have tried the Brown and Green Lentils and i must admit that i am feeling like i have more energy. The link i am buying the Sprout products from is : https://www.livingfood.co.uk/ the first page also has the theory behind it all. I also spoke to my GP yesterday and she said that it can not do me any harm and to continue trying it.
I have not had any Hydro for three weeks now as the pool is being resurfaced, i feel like i am back where i started and i am sure that when i start back its going to hurt like hell afterwards like it did after the first session. I only have four sessions left and then i go back to the Physio Nick and see what happens from there.
When i saw the GP she advised me that she had a reply back from the pain clinic and that they could not help me because they did not have the means to help me. The GP seems to think that the hospital she refered me to are confused because of my first referal was by the psycharist and she is refering me to a different hospital.
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