I finally got my appointment through for my electro nerve conductivity test; its on the 10th of June, looks like they gave me a little more notice this time, after which i will get another rhemotology appointment. I have heard the test is painful but i am hoping that it isnt.
Feeling a little better re my hypothyroidism wise my hair doesnt seem to be falling out as much any more and my skin seems much better on my hands although it still seems very flaky on my feet.
Social Services seem to be very slow, we were suppost to hear a descision back about three weeks ago about getting carers but we havent heard anything back yet and every time we call her she isnt in the office or shes in a meeting. Its very frustrating and annoying i just want to get the ball rolling i suppose you get your hopes up that things are going to change for the better and they get dashed.
Also it looks like the Occupational Therapist isnt going to be able to get us an electric bed.. they are going to take it to their panel but the chances arent hopeful unless me and my fiance want to sleep in seperate beds or rooms which we dont want to do at the age of 27/28. There is another small possibility that we can get a grant from the council if not we are going to have to save up for one ourselves and they arent exactly cheap. The OT was suppost to come around about a week ago and measure the length of our bathroom for the wetroom details but i was sick. Its possible they may not need to do anything but put down a new special floor and take up the bath and put in a special shower and shower container style thing.
No news on the wheelchair but i know there is a queue but its been several months and still no word.. Onwards till the future..
Wednesday, 27 May 2009
Saturday, 9 May 2009
So much going on
After several failed blood tests i finally had some correct blood results back which show that i need my medication for my Thyroid upping; which i knew anyway as the symtoms have been getting worse especially with the dry skin and hair falling out.
I have finally been assigned both a Social Worker and a Occupational Therapist which i have seen several times both which seem like something is finally going to get done.
The Social Worker has assessed me and is sure that i will be able to get a carer to help get me up in the morning, wash, dress, prepare breakfast and make sure i have enough drink etc, and then come back later at lunch time to prepare lunch and make sure i have everything i need. Also possibly help with any housework and cleaning. We have filled in some forms with her and she has to address a panel for funding for an amount of money to pay for the carer; this is going to be done shortly.
The Occupational Therapist came to our home and assessed me too, looked at what i needed, suggested having the bathroom replaced with a wetroom which my fiance was not happy with at the beginning with but has agreed that it is the best step forward. The OT also has also suggested a few small things around the house equipment wise that will make things easier for me and has ordered these.
The other major thing that is being discussed is the bed; as i have problems sleeping due to pain and being able to get comfortable also i have problems sitting up and also turning and getting out of bed; first she suggested a bed raiser but that would fit under the whole double mattress and raise my fiance too which would not be practical. Then she suggested us having seprete beds and myself having a bed raiser or electric hospital bed.. but at the age of 27 i dont wish to sleep in a seperate bed to my fiance. The OT is trying to think of some other ideas apparently they can do full double electric beds but she doesnt seem to want to think of this idea.
We recently went to a Baptist conference but as i am so weak and get tired easily i was unable to attend any seminars and spent most of the time in the hotel room which was a little lonely but it was nice to be in a different location and be away from home. I did get to go along the beach for a very short walk though and ride on the mini train along the beach which was nice but very bright.
Had another problem which i am really unhappy about, when i saw my Rhemotologist last he said i would be refered for a electro nerve test, the appointment came through whilst we were on holiday giving three days notice for the appointment, so when we came back of course the appointment had already passed. Then i recieved a letter from my Rhemotologist saying i had missed the appointment and that if i wished to see him i would have to be re-refered as he had now discharged me because of this. I think this is disgusting especially because i told him i was away and not to arrange it for these dates.. i phoned up and i am "apparently" awaiting another appointment but this is a month and a half later. How come previously they had made the appointment within a week or so and now so long? I think they are making excuses.
I have finally been assigned both a Social Worker and a Occupational Therapist which i have seen several times both which seem like something is finally going to get done.
The Social Worker has assessed me and is sure that i will be able to get a carer to help get me up in the morning, wash, dress, prepare breakfast and make sure i have enough drink etc, and then come back later at lunch time to prepare lunch and make sure i have everything i need. Also possibly help with any housework and cleaning. We have filled in some forms with her and she has to address a panel for funding for an amount of money to pay for the carer; this is going to be done shortly.
The Occupational Therapist came to our home and assessed me too, looked at what i needed, suggested having the bathroom replaced with a wetroom which my fiance was not happy with at the beginning with but has agreed that it is the best step forward. The OT also has also suggested a few small things around the house equipment wise that will make things easier for me and has ordered these.
The other major thing that is being discussed is the bed; as i have problems sleeping due to pain and being able to get comfortable also i have problems sitting up and also turning and getting out of bed; first she suggested a bed raiser but that would fit under the whole double mattress and raise my fiance too which would not be practical. Then she suggested us having seprete beds and myself having a bed raiser or electric hospital bed.. but at the age of 27 i dont wish to sleep in a seperate bed to my fiance. The OT is trying to think of some other ideas apparently they can do full double electric beds but she doesnt seem to want to think of this idea.
We recently went to a Baptist conference but as i am so weak and get tired easily i was unable to attend any seminars and spent most of the time in the hotel room which was a little lonely but it was nice to be in a different location and be away from home. I did get to go along the beach for a very short walk though and ride on the mini train along the beach which was nice but very bright.
Had another problem which i am really unhappy about, when i saw my Rhemotologist last he said i would be refered for a electro nerve test, the appointment came through whilst we were on holiday giving three days notice for the appointment, so when we came back of course the appointment had already passed. Then i recieved a letter from my Rhemotologist saying i had missed the appointment and that if i wished to see him i would have to be re-refered as he had now discharged me because of this. I think this is disgusting especially because i told him i was away and not to arrange it for these dates.. i phoned up and i am "apparently" awaiting another appointment but this is a month and a half later. How come previously they had made the appointment within a week or so and now so long? I think they are making excuses.
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