Wednesday, 19 January 2011

Horrible Relapse :(

This is where I really have to say that I HATE MS!

I have had a nasty couple of weeks that has really tested my composure and my spirit.
It started in the first week of January.
I thought I might be having another episode of vertigo. I was feeling really dizzy, sick and my head was spinning. But it didn't feel quite the same.
I still didn't feel right the following week, I was overwhelmingly fatigued, had no energy and had no real control over anything. My pain levels were increasing every day too.
I decided that I would go and see my GP and see whether there was any news on me getting my prescription for Sativex - the newly licensed Cannabis drug. When I saw my Doctor, he couldn't believe that I still hadn't heard anything from the pain clinic. Bearing in mind that I had seen them back at the beginning of November and had been told then that I would be getting a prescription for Sativex in the post.
It's now the middle of January and there is NO sign of it.
My Doctor had received a letter from the Doctor that he had written to but that was just passing the buck to another Doctor. No-one wanted to take responsibility for authorising my prescription.
What I found so frustrating was the fact that as far as I was aware, I had been told I was getting this drug. Not that it had to be authorised and may take some time before I would get it.
Anyway my GP said that he would continue to chase it, but in the meantime, I would just have to ride it out.
He advised me to try and get an appointment to see my consultant. I haven't seen him for almost two years, so apart from the fact that he felt I ought to have an assessment with him, he also suggested that I could be having a relapse, so he felt that talking to my consultant would be a sensible thing to do.
The following day I had an appointment with my Physio. Unfortunately I hadn't done anything over the Christmas period so we had to start again with my exercises on the gym ball. But that was OK, at least I was doing it now! I talked to her about the possibility that I could be having a relapse. She agreed that things had changed as in my fatigue was a lot more prominent and my pain levels had increased significantly. But she said not to panic and just to see how things went over the next few days.
I had another appointment with her the following day. Unfortunately things had changed again. I had a weird thing going on with my right eye. It wasn't a visual thing, but it was a nerve flickering in behind my eye. The eye itself felt really heavy too and you could see that when looking at my eyes. The right one was much more closed compared to the left one. It was like I couldn't open it properly. My physio came around again and she looked at my eyes. She felt at this point that it was almost certain that I was having a relapse. So we didn't do any physio.
There is no point in trying to work through a relapse as it will only make things worse. You have to rest as much as you can and just wait for things to get better.
She did encourage me to get some more sleeping tablets in a bid to break the non sleeping cycle that I was in and with the hope that this would speed up the recovery process. I'm very wary when it comes to sleeping tablets but they are there to do a job and I do realise that.
Unfortunately for me, things were only going to get worse.
On Friday I went to bed, having taken my usual medications including pain killers and the sleeping tablets. I woke up at again at about 4.30AM with the most excruciating pain in my right side. Particularly my right hand and arm. But I also had pain in my legs and feet and also the right side of my face was very sensitive.
The pain was incredible. I have always suffered with pain, but this was something else. It took my breath away, I was actually hyperventilating, it was causing me so much distress.
I was so scared.
I didn't want Martin to call anyone though, I'm a bit strange like that! I would rather wait and see what happens. So Martin got me downstairs, calmed me down and within a couple of hours we went back to bed and I managed to get back off to sleep.
I got up about 12pm on Saturday. We were due to be doing some singing in the evening. But as I wasn't feeling great, one of the other girls had no voice and one of the guys wasn't available, we had to pull out of that gig.
It was probably a good thing as I was in bed by 8pm on Saturday night, feeling really really poorly. I had taken all my meds, including pain killers and sleeping tablets.
Sadly at 3AM I woke up again in excruciating pain. Once again my hands were horrendous, the pain was just awful. This time I decided that I couldn't just carry on and hope it would stop. So I called the duty Doctors on call. It is very hard talking to a Doctor that doesn't know your situation and perhaps doesn't know a huge amount about your particular illness. Martin and I had wondered whether to go to A&E, but I hate to make a fuss and I always feel that there isn't a lot that they can do anyway.
So having spoken to two of the Doctors on call, I was prescribed Diazepam. This was all they had to offer considering all the pain meds that I currently take.
Martin went to the hospital to collect it for me..........Thank goodness for my amazing husband, I'd be so lost without him.
I took the Diazepam and managed to sleep again, not surfacing until about 1.15pm the following day and that was only because Martin woke me up!!
I took the Diazepam again on Sunday night and although it didn't stop me waking up in pain through the night.....4 or 5 times actually, by taking it I was able to get myself back off to sleep, which did help.
While all this had been going on over the past week, I had also been able to get myself an appointment with my consultant. I am seeing him on February 7th. And while I was making the appointment, I was able to find out that he is able to prescribe the Sativex that I have been having so much trouble in getting hold of.
So yesterday I decided that it might be worth contacting my MS nurse. No disrespect to them, but they don't really know how to deal with me and the pain that I suffer with. So that was why I hadn't contacted them sooner. But after the weekend that I have had, I really needed to speak to them and see if there was anything that they could do to help. I said to her that I was so desperate that I just wanted to be knocked out and woken up again when it was much better. I realise that this sounds very self pitying and that is not how I am at all, but when you have this sort of pain so constantly, it really wears you down and you cannot see any light through the tunnel at all let alone at the end of it!
Anyway having spoken to the nurse, she was going to try and contact my consultant and see what he could suggest. She wasn't able to get hold of him yesterday but she rang me today having managed to speak to him.
I am delighted to say that he is doing a prescription for me for Sativex. I will either be getting it in the post or it will be sent to a pharmacy that I can collect it from.
I am so relieved. I know I can't pour all my hopes into this drug, I may take it and it doesn't help at all, but I have to believe that it is going to help me in some way.
I have to admit that these have been some of the hardest days that I have had since I was diagnosed. It is very scary and really does mess with your mind, but I would like to think with the support I have from family and friends including friends on Facebook and Twitter, who have been amazing, that I will get through this period and come out the other side.

Thank you to everyone for your support. Whether you have MS or you know someone with MS, the help and support that you give us is so invaluable. It's what helps keep us strong and gives us the ability to fight this horrid illness.
Thank you!

Monday, 10 January 2011

Happy New Year to One & All!

Happy New Year to everyone!
I'm sorry it's taken me so long to get round to wishing you all the tidings of the season!
I hope you have all had a good festive season and that it hasn't taken it's toll too much.
We had a lovely one.
It ended up being unplanned and really enjoyable.
Because of the weather, friends plans had changed and we were invited to join them on Christmas Day!
It was a really wonderful day...........Thanks Joe & Rob!
They had got married on December 17th and it was a beautiful day. It snowed and the setting was just stunning. The day itself was wonderful, beautiful memories made for all of us who were there.

And we have another one to look forward to in May..........Matt & Claire - I thought a countdown might help!!

So with the festivities of Christmas and the New Year all over now, it is time to look forward to 2011.
I am slightly actually I am going crazy!
Back in November I saw my pain clinic Doctor. We discussed the medications that I was on and I conveyed the fact that I was still suffering badly with neuropathic pain in my hands, feet, lower back and arms. The decision was made that I would be put on the new Cannabis drug - Sativex. Of course the high is taken out of it and it is all legal! But it has been seen to be helping a lot for people with severe neuropathic pain. So I agreed straight away.

I was told to slowly come off Oxcarbazepine - one of my existing medications, but if I felt that I needed to stay on it, that was fine and I could continue on it.
My Doctor told me that he would send me the prescription for Sativex, so I was under the impression that I would have it within about 6/8 weeks.

By mid December, I still hadn't had anything and I was getting pretty desperate, so I went to see a GP at my surgery.
I had tried to call the pain clinic, but they just told me that they were waiting for another Doctor to sign it off. I couldn't speak to the pain clinic Doctor as they were too busy, but they would talk to GP Dr's.
I spoke to the GP about it and told him that I was at the end of my tether and didn't really know what to do. He assured me that he would write to the Doctor that we were waiting for to sign off the prescription and he would also chase up the fact that I should be seeing a pain psychologist. I have had that appointment confirmed now, but I still have no new medication.
I have continued on with Oxcarbazepine. There is no way that I could come off that and have nothing to help me......I do have a couple of other pain meds, but nothing strong enough on it's own.
I don't really know what I am supposed to do next. I hate moaning to the medical profession, but does that mean that I am supposed to just sit and suffer with the pain that I am in??
That also sounds so self pitying and I hate that. I am not one for feeling sorry for myself but in this instance I do feel I have a bit of a case!!
And by writing it on here, I am not bending Martin's ear about it!! He takes so much from me and he never complains to me. It is one thing that I am SO grateful to him for. He is my rock and I love him SO much.
I have had a bad weekend. Since about last Thursday, I have been feeling quite dizzy, sick and overwhelmingly fatigued. I thought to start with that it may be another episode of vertigo, but I'm not too sure. It hit me really hard on Saturday, I was in bed by 4.30pm and I didn't get out of bed on Sunday until 2pm..........and that was only because I needed my medications.....and a cup of tea!!
I had another rough night last night. I went to bed about 10pm, but couldn't sleep. I was still awake at about 3am and with lots of pain in my hands. It gets so frustrating and that makes sleeping even harder!
I eventually got some sleep and got up again about 11am this morning. But am still not feeling too great.
I think I may try and see a Doctor tomorrow as it's been going on for a while, but I don't like bothering Doctor's too much. I guess I can talk to them about the pain issues and see whether they know any more about the Sativex situation.
I'll let you know what I do/what they say!

And coming away from MS, we have a couple of singing ventures coming up. We are helping out someone who is doing their own gig. While he has to do some costume changes, we are going to sing a couple of numbers to fill in time. It won't be too taxing but it should be fun! It will be good to get the lungs working again!

Anyway, I wish everyone well, I hope the new year is a happy and healthy one.
Love & hugs