Please can you advise me on how to get help from my GP? Is there any booklets available on this condition which is ruling my life. I am currently unable to bathe myself, get dressed, prepare food, even eating is difficult due to the constant pain, so I find myself 'doing with-out' as it's far less painful, messy, so difficult actually getting the food to my mouth!
I'm getting progressively worse, don't get dressed, there-fore I don't go out of the house, it's a no win situation that I find myself in.
Sleep is impossible due to constant pain waking me up, then that's me for the night, making me listless, depressed & annoyed with myself!
Being unable to bathe myself is horrible......Having to ask to have my hair brushed, put in the shower & bath, then washed is so degrading, then I have to wait until my family are able to help me with these things which are really basic personal hygiene.
No one seems to understand, as I've so many physical problems related to pain, they don't want to know.....How can I help them to listen & to understand me.
Life at the present time doesn't seem worth living, not like this.
I'm not a stranger to pain, I do have a high pain tolerance, as I've had a 'Cervical Meningioma' in my neck & spine, entwined around my cord & Carotid Artery, had surgery many times to remove tumours, apart from to the artery as an aneyurism was found, so it had to be left until the anyurism was clipped & has just been left at that ever since.
All this nerve damage causes terrible pain it's like having a huge electric shock running from my spine & down through to my limbs. Have coped with this for years, these symptoms now are really getting to me, so please any advice would be extremely welcome as I'm only 51, yet find myself shuffling about like an old woman.
Much appreciated, regards to all of you that are suffering too.
First thing on Tuesday ring your local council and ask for the Adults with Disabilities team.Explain that you need to see a social worker asap.The social work assigned should do an assessment of your needs and give you some idea of the help available.Also make an appt with your GP as an emergency.
Had no idea such services via the council existed, or that I'm able to access a social worker through them, I shall do this on Tuesday morning.
I feel as though there is 'light at the end of the long, dark tunnel' that I'm finding myself in, which is very difficult to get out of once I'm this far down.
You've given me so much hope in a system that I really thought had failed me.
Getting an appointment with my G.P may not be easy, just getting through to them on a 'normal Monday' is difficult, so after the long holiday will be near impossible, I will certainly try my hardest though.
I'm worried about requesting an emergency appointment, as the receptionists find it difficult to understand my position & why it's an emergency. My own doctor is on Maternity Leave, I phoned for an appointment approx. 3 months ago, was offered a 'Telephone Appointment' with one of the doctors in my surgery, which quite honestly was a waste of both her time & mine, (I had to wait 3 wks for this!), unbelievable, yet true.
This G.P. actually informed me to make an appointment with the G.P. who's panel I had been put onto next day when surgery opened.
8.30, I began the quest, 15 times I telephoned to try get through to surgery, when I finally managed it, I was told that G.P. that I had been put with had been absent for 2 months & they had no idea when he would be due back! What was the point of the Dr. that I had spoken to on the telephone a day earlier telling me this????? Their consultation rooms are next door to each other....I felt as though I was being 'led a song & dance', to put it mildly!
I know that perhaps I'm rather a 'mouse' & don't push myself enough. Now though, after all the kind, thoughtful. caring people that have answered my plight, it has made me realise that if all of you can offer so much help voluntary, when you're all suffering yourselves, that an appointment with a doctor shouldn't be a huge dilemma that it appears to be, I never actually go there or bother them, I just get repeat prescriptions for my medication & have done so for the past 10+ years.
I can't thankyou enough for your advice, I'm now informed to what's available out there if only I ask for it, after the horrible time that I've been having, I'm sure that with the aid of moral support, realise now that to get help, I'll have to help myself first by asking for it, which I intend to do,
Many, many thanks, kindest regards & I hope that you are coping with your illness.
I shall keep you all informed as to the outcome of my quest to get an appointment.
Please be patient when you call adult social care. It will probably be a call centre that will do a small screen to ensure you meet the criteria. With what you have said, you will be eligible.
As we have had a 4 day bank holiday, the back log will be long in most areas but a social worker will call you back, though it may or may not be tomorrow. I am a social worker for older people and physical disabilities.
Although we aim to assess within 28 days from when you self refer. This is not often possible, not enough time, workers, etc.
Be very honest when you speak to the social worker. Say everything you have said above that you cannot do. Washing, dressing, your hair, meals, etc.
In our area, like a lot of cases go to the enablement team.They come out and assist you with a period of time, so they can get a better idea of what help you need. They also work with occupational therapists who can look at aids that you may need, such as a bath board, rails and something to get out of bed.
I have an extra stair rail, bathboard, etc. I also have help now through a direct payment for assistance with a daily shower, dressing bottom half, help with meals as I have a minor in the house and as I am a single parent, I have social activities for her as I am unable to walk or drive far. This has made a tremendous difference in my life. As I am not wiped out trying to get up and dressed in the mornings or my 11 year old doing it. I have been able to work 20 hours a week. I can then have a lie down before my daughter comes home.
Good luck, remember to be completely honest about the extent of the help you need and hopefully you will get the assistance required.
If you have other queries let me know. Like said above we are all here to help each other out.