Thursday, 9 December 2010

What a week..........!

Hey everyone,
Well what a week I have had. Actually, it has been the last couple of weeks really.
This damn MS is driving me crazy & then when you add in the cold, which causes the pain to intensify, which leads to fatigue and sleepless nights and oh, then we start the process all over again when a new day starts. As you can tell, I haven't been a happy bunny recently :(
I am still waiting to receive my prescription for the new medication, Sativex. I saw the pain
clinic at the beginning of November and I was lead to believe that I would have had the prescription sent to me by now. So I am more than a little frustrated that I haven't had it yet.
I phoned the pain clinic, but they are waiting for authorisation to prescribe the drug and no-one can tell me when that will happen. I couldn't even speak to my pain consultant because they are so busy and they aren't allowed to phone patients back!
I am not one to complain or to make a fuss to get what I want, but I am at the end of my tether.
I just want to be knocked out and for someone to wake me up when it is all sorted. But that's not going to happen eh?!!

So I ended up going to see a GP and asking for his help. He
couldn't believe that I hadn't had this drug yet and I knew that he would be pro active in getting the situation sorted out.
He is going to contact the Doctor who is doin
g the authorisation and try and get things sorted out before Christmas. So fingers crossed.
I have been struggling SO much with my pain. The cold hasn't helped and I know that I can't do much about that apart from keep myself wrapped up warm. But the pain has been so bad that it has literally been taking my breath away.
My hands are horrendous. It makes doing anything really hard, because whatever I do causes pain.
Even just sitting, hurts. It
has been a burning pain, sometimes it feels as though someone has been slashing my hands with razors. They get really cold, like ice blocks and then it feels like they are being stabbed with pins. It is just an ongoing thing that is all day, every day and has been really wearing me down.
I have been waking up between 3 & 4am every night, in lots of pain and then not being able to get back to sleep again. And when you are sleep deprived, it makes everything seem so much harder to deal with.
It has been so bad and unmanageable that I went to see
my GP and asked for some sleeping tablets. It goes against everything I want to do, but I need to break this cycle I am in, so I have only been given two weeks worth.
I am looking at it as an aid to help sort out my sleep pattern and once that is done, I will stop taking them. I a
m actually finding it hard to take them each night because I just don't want to but I hate to admit that it is starting to help!
The pain hasn't just been in my hands eithe
r, there is my lower back, my legs and my feet too, so there is just no let up anywhere!
I would just like it to stop now! Maybe Santa's listening??

I am trying to stay positive.......although Martin ha
s taken the brunt of my frustration. Bless him!
I am looking at the things to look forward to. We have our trip to see The Polar Express, I am going to a craft fayre on Saturday to help a friend sell his photo cards, but I am also going to be selling my handmade cards to raise money for the local MS society too and next Friday I have a wedding to go to. My best friend is getting married and it is going to be amazing!
Of course it is also Christmas, which is always a wonderful thing!
So I keep reminding myself
that there is lots to be happy about and I need to try and take the focus away from my MS.
We have our tree up and it looks
beautiful.............even if I say so myself!!
We have reorganised our lounge a bit and tidied up quite a lot, which makes me feel quite good. We haven't had a big tree up for the last few years because of the way our lounge is set up, but this year we have made room for it and so the six foot tree has come out! I had forgotten how big it was and it looks really lovely! Very Christmasy!!

I am having Physio at the moment too. It started off because I am changing the crutches that I use. I have been using elbow crutches since about 2003. Eventually I bought myself a pair
with comfy handles because my hands were really struggling with the hard ordinary handles.
Then when I started seeing my Occupational Therapist, she suggested that it might be worth looking at changing my crutches to gutter crutches. They have a strip of material for you to rest your arm in and then handles that you just gently rest your hands on. It changes how you walk with them. With the gutter crutches it feels like a skiing motion.
I have been going to the hospital to see my Physio for the last ten days. This is just so that I can get used to the new crutches before I go out with them. I didn't want to go off and have a fall
or something and then not have the confidence to use them.
I am getting on really well with them and I think they are going to help my hands a lot. It takes the pressure
off them completely and that is just what I need.

I do feel a bit strange with them and you don't see many people using them, but if they work for me and help with the pain I get in my hands, then I am not going to worry about what I look like!!
I'll let you all know how it goes!!

Anyway, I hope everyone is doing OK and that the cold isn't affecting people too badly. I hope the Christmas preparations are coming along well............Thank God for the Internet eh?!!
Take care one and all,
Love & hugs XxXxX


  1. Wishing you less pain for the holidays. For whatever reasons, Patti has never known pain as an MS symptom. Perhaps because she has had every other possible one? Hoping Sativex works! Of course here in the US, it is not even an option.

    Caregivingly Yours, Patrick

  2. satifex can only be prescibed by your consultant or pain management specialist,as im sure you know,but sometimes even then its not passed. post code lottery again for NHS.please amelia,DONT expect a miracle cure.there isnt one love. yeah,some help.lot make you worse.some do nowt at all.pain is a constant with me,but i have decided enough is enough,so no new drugs. stick to baclofen n gabapentin.hope it works for you when you do get mort x