So January and February have not been the greatest.
Towards the end of last year I started to feel that things were changing and not in a good way. I was struggling a bit more with fatigue, but in a way that I could really feel it. My pain had started to increase quite substantially and as I suffer with pain quite badly anyway it meant that my pain was becoming pretty unbearable.
I also had a problem with my right eye. My eye lid had become very heavy and I was finding it hard to keep it open. To look at me, it was easy to see that my right lid was droopy. My vision wasn't affected but it felt very weird!
I was having some Physio sessions at the time and she saw my eye and I told her about the fatigue and pain etc. She really felt that I was having a relapse and so she didn't want to carry on with the physio until I had got past this blip.
We all hoped it was just a blip and that it wouldn't last too long, but that wasn't the case and unfortunately I am still struggling with all sorts of symptoms.
So anyway after a couple of weeks of things deteriorating, I had a particularly bad weekend.
very overwhelming.My pain levels were escalating, I was having badly disturbed sleep, my hands were agony, it felt like the skin was being stretched over my hands or that someone had taken a razor and slashed the skin. It was really awful and waking me up in the early hours every night. It was getting I couldn't get through a night without waking up in excruciating pain. It was a really difficult time.
As it was a weekend and the early hours, I couldn't get to a GP, so I called the on call doctors. The only thing that they could suggest was Diazepam - because of all the other medication I'm on. So my wonderful husband went down to the hospital at 4am and collected the prescription for me.
After the weekend, I spoke to several people, my MS nurse, my GP etc. I'd already made an appointment to see my consultant but that wasn't going to be until February 7th.
I was starting to get in a bit of a mess. I wasn't sleeping well, in fact I wasn't really sleeping much at all.
Later that week, on the Thursday, I was due to have an appointment with my Psychologist, which I was holding onto because I knew I would be able to talk it all through with him. You can imagine my disappointment when he called me to cancel the appointment that morning. I rang him back and he could tell I was in a bit of a mess - probably because of the tears I was shedding!! Anyway, he explained that he had a cold and didn't want me to get it, but he did say that he was happy to do a telephone consultation. So later that afternoon he rang me back and we had a good chat. He reassured me that I wasn't doing anything wrong and he said that he would call me again the following day to check up on me.
I had another awful night and I was at the end of my tether.
Part of my frustration was the fact that I should have been started on Sativex back in November, but I was still waiting for the prescription to come through. It was my pain doctor who was trying to put me on it, but I couldn't get to speak to him. That's why I went to my GP to get him to try and find out what was happening. In the meantime I had spoken to my consultant's secretary, who told me that he could prescribe it. So my MS nurse co-ordinated with him to get a prescription written, but I wasn't going to get it until sometime the following week.
I was trying to stay positive but when you know you are going to have to cope with unbearable pain and not knowing how to deal with it, it becomes quite unmanageable.
As promised, my Psychologist phoned me on the Friday afternoon and I told him how frustrated I was at not getting the medication I thought I was getting and not knowing what to do to get through this period.
I told him that I had even thought about going to A&E because I knew I needed help. He asked me why I hadn't gone, to which I told him that I didn't want to make a fuss!! He said to me that I had tried lots of different places to get help, that I was in a situation in which I needed help and if A&E was the last place for me to try then why didn't I go and ask for help. We talked through it and I realised that I had to do something as the weekend was coming up and I didn't feel that I could get through it without some medical help.
So on Friday 21st January at about 5pm Martin and I went down to A&E. After a bit of a wait I eventually saw the Doctor on call, who spoke to the medical registrar on duty and they agreed that they would admit me. I was admitted to an assessment ward and then the following day it was decided that they would do a course of steroids over the weekend and then on the Monday they would look at getting the pain clinic to see me.
I was in hospital for a week. I had a large course of IV steroids, which as usual for me, didn't do anything to help me. I was seen by my pain clinic doctor, who changed me from Oxynorm to Oramorph - liquid morphine and I could have that up to every two hours. He also wanted to try an infusion of something that is usually used for anaesthetic situations, but if it worked then it was something that could be done every 4-6 weeks. Unfortunately it didn't really do anything other than space me out completely!!!
After trying that he then decided to try me on Ketamine! Wow they were stuffing me full of strong, powerful stuff!!
The Ketamine made me feel sick and dizzy when I took it but they gave me an anti sickness tablet with it, so that helped.
By the following Friday, the doctors decided that there wasn't much more that could be done in hospital and we had a plan in place. My pain clinic doctor had made an appointment for me on the Monday, I had my consultant appointment the following week and I had an appointment booked with both my Psychologist and a pain psychologist in a couple of weeks and Martin had been able to pick up the Sativex so I would be able to start that over the weekend.
So I was discharged, with a truck load of drugs including morphine and ketamine!!
There is more to this story which I will continue in the next day or two, but I'll be up all night if I carry on now and my hands hurt!!
So this is...............to be continued!!
Hugs
XxXxX
