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
Thursday, 10 March 2011
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!
XxXxX
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!
XxXxX
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 frustrated............no 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
XxXxX
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 frustrated............no 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
XxXxX
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 doing 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 am 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 either, 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 has 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
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 doing 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 am 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 either, 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 has 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
Saturday, 27 November 2010
Tysabri Number 19.......and it's very cold!
Hi everyone!
I guess I should say Good Morning, as it is 12.04AM!
I have had my Tysabri infusion today. It was number 19.
I find that very strange! 19 times, I have had a needle put in me. Actually, I have had far more attempts than 19. When I first started having the infusions I was having a regular cannula. My veins are a complete nightmare and the nurses would need several attempts to get the cannula in.
This became a real struggle for me. It wasn't just the fact that they couldn't find the vein, it was when they put the needle in, it was SO painful for me.
I suffer very badly with pain. My skin is incredibly sensitive and I experience a lot of neuropathic pain. It's one of the great anomalies of MS. You could have a dozen of us in one room and only a handful of us will actually suffer with pain.
I'm always amazed when I speak to other MS'ers who don't get any pain at all.
How can that happen??!!
I got to the stage where I needed something to change. I couldn't carry on having the infusions if I had to be canulated. It was causing so much stress for me. The infusions are every four weeks and I would start worrying about it with two weeks to go. It's fair to say that I couldn't handle it!
One of the nurses asked me why I didn't have a portacath? I had no idea what a portacath was! It was explained to me that it is a port that is inserted under the skin. It is attached to a vein so that when the infusion is done, the nurse just has to put the needle into the port and the infusion is hooked up.
I followed this up and in September 2009 I had my portacath inserted above my right breast. Having the portacath has made a huge difference to me and has allowed me to continue having the Tysabri treatment.
So here we are in November 2010 and I have had 19 infusions. I have to say that I believe that it is possibly helping my MS.
I don't feel any different, I have all the same symptoms that I had when I started, which may sound strange, but I guess the positive thing is that I am not having many relapses.
The way I look at it is that it is keeping things under control. It may not be as much as I want but it is better than nothing!!
I read an article about Tysabri to do with the longevity of it. It is the one thing that really bothers me.....other than the PML issue! Because it is relatively new, no one knows what effects it will have long term.
The article I was reading suggested that if you have been on Tysabri for two years, it may be worth looking at taking a break from it for a little while, this would then possibly reduce the risks of getting PML. (PML is a rare brain infection that is known to be associated with Tysabri).
Obviously if you take a break, then you are opening yourself up to having a relapse, but in my eyes, I would prefer a relapse to the risk of having PML.
I talked to my MS nurse about this, but she turned down the idea straight away. She told me that although my body is tolerating Tysabri at the moment, if I took a break, then there is no guarantee that my body would accept it again. And as there isn't anything else at the moment that I could transfer to, so they wouldn't want me to come off it.
I understand that! I did say about my concerns of the risks of getting PML, but she assures me that the risks are minimal and they monitor me closely for any signs.
I have to trust that my consultant and the MS nurses have my best interests at heart. They are going to do what is best for me. And that is really important for me to remember. It is very easy, as the one who has to go through the treatment and has to deal with the illness, not to always look objectively at a situation.
So I had the infusion today and for some reason, whenever I have it, it knocks me out. I get really really tired and I know not to arrange anything for the next 24 hours or so.
I can almost feel it, once the infusion is up and running, I feel my eyes getting heavy and my body deflates!
The nurse was saying to me today, that we don't know why it affects me the way it does. It's not something that happens to any of the others who have it. But then I have always been a little bit odd!!
So I always have to have someone with me because I know I can't drive myself home. It's one of the reasons that Martin became my carer!
We got in the car to come home and within about 15 minutes, I was fast asleep. I knew it would happen. It was as though a fog had come over me.
Once home, we had a cup of tea and then by 4pm I was in bed fast asleep! I woke up again about 11.15pm, in need of another cup of tea.
Hence the reason I am up and writing this post. Of course it is The Ashes on in Australia at the moment, so I am able to watch a bit of the cricket too..........come on England!!
It is so cold at the moment. And as it is the start of winter, it's only going to get colder! That is a scary prospect!
It is something that does affect the MS pretty badly. But then extreme heat does too, so I can't win!
I hope everyone else is tucked up nice and warm and not suffering too badly. The one positive about this time of year is that it's CHRISTMAS TIME!!
Martin and I are big Christmas fans. We love this time of year and get very excited!! We have already planned our annual outing to go to the Birmingham Imax cinema to see The Polar Express in 3D! It is a wonderful film and it means a lot to us, to be able to see it in it's full glory at Christmas! Happy times!!
Take care everyone, keep warm and keep happy!
Love & hugs
XxXxX
I guess I should say Good Morning, as it is 12.04AM!
I have had my Tysabri infusion today. It was number 19.
I find that very strange! 19 times, I have had a needle put in me. Actually, I have had far more attempts than 19. When I first started having the infusions I was having a regular cannula. My veins are a complete nightmare and the nurses would need several attempts to get the cannula in.
This became a real struggle for me. It wasn't just the fact that they couldn't find the vein, it was when they put the needle in, it was SO painful for me.
I suffer very badly with pain. My skin is incredibly sensitive and I experience a lot of neuropathic pain. It's one of the great anomalies of MS. You could have a dozen of us in one room and only a handful of us will actually suffer with pain.
I'm always amazed when I speak to other MS'ers who don't get any pain at all.
How can that happen??!!
I got to the stage where I needed something to change. I couldn't carry on having the infusions if I had to be canulated. It was causing so much stress for me. The infusions are every four weeks and I would start worrying about it with two weeks to go. It's fair to say that I couldn't handle it!
One of the nurses asked me why I didn't have a portacath? I had no idea what a portacath was! It was explained to me that it is a port that is inserted under the skin. It is attached to a vein so that when the infusion is done, the nurse just has to put the needle into the port and the infusion is hooked up.
I followed this up and in September 2009 I had my portacath inserted above my right breast. Having the portacath has made a huge difference to me and has allowed me to continue having the Tysabri treatment.
So here we are in November 2010 and I have had 19 infusions. I have to say that I believe that it is possibly helping my MS.
I don't feel any different, I have all the same symptoms that I had when I started, which may sound strange, but I guess the positive thing is that I am not having many relapses.
The way I look at it is that it is keeping things under control. It may not be as much as I want but it is better than nothing!!
I read an article about Tysabri to do with the longevity of it. It is the one thing that really bothers me.....other than the PML issue! Because it is relatively new, no one knows what effects it will have long term.
The article I was reading suggested that if you have been on Tysabri for two years, it may be worth looking at taking a break from it for a little while, this would then possibly reduce the risks of getting PML. (PML is a rare brain infection that is known to be associated with Tysabri).
Obviously if you take a break, then you are opening yourself up to having a relapse, but in my eyes, I would prefer a relapse to the risk of having PML.
I talked to my MS nurse about this, but she turned down the idea straight away. She told me that although my body is tolerating Tysabri at the moment, if I took a break, then there is no guarantee that my body would accept it again. And as there isn't anything else at the moment that I could transfer to, so they wouldn't want me to come off it.
I understand that! I did say about my concerns of the risks of getting PML, but she assures me that the risks are minimal and they monitor me closely for any signs.
I have to trust that my consultant and the MS nurses have my best interests at heart. They are going to do what is best for me. And that is really important for me to remember. It is very easy, as the one who has to go through the treatment and has to deal with the illness, not to always look objectively at a situation.
So I had the infusion today and for some reason, whenever I have it, it knocks me out. I get really really tired and I know not to arrange anything for the next 24 hours or so.
I can almost feel it, once the infusion is up and running, I feel my eyes getting heavy and my body deflates!
The nurse was saying to me today, that we don't know why it affects me the way it does. It's not something that happens to any of the others who have it. But then I have always been a little bit odd!!
So I always have to have someone with me because I know I can't drive myself home. It's one of the reasons that Martin became my carer!
We got in the car to come home and within about 15 minutes, I was fast asleep. I knew it would happen. It was as though a fog had come over me.
Once home, we had a cup of tea and then by 4pm I was in bed fast asleep! I woke up again about 11.15pm, in need of another cup of tea.
Hence the reason I am up and writing this post. Of course it is The Ashes on in Australia at the moment, so I am able to watch a bit of the cricket too..........come on England!!
It is so cold at the moment. And as it is the start of winter, it's only going to get colder! That is a scary prospect!
It is something that does affect the MS pretty badly. But then extreme heat does too, so I can't win!
I hope everyone else is tucked up nice and warm and not suffering too badly. The one positive about this time of year is that it's CHRISTMAS TIME!!
Martin and I are big Christmas fans. We love this time of year and get very excited!! We have already planned our annual outing to go to the Birmingham Imax cinema to see The Polar Express in 3D! It is a wonderful film and it means a lot to us, to be able to see it in it's full glory at Christmas! Happy times!!
Take care everyone, keep warm and keep happy!
Love & hugs
XxXxX
Wednesday, 17 November 2010
Hi everyone,
I'm having a really fatigued day today :(
Part of that is because I said goodbye to my Dad today, as he went back to work.
My dad is a Captain in the Merchant Navy. This means he works on cargo ships. (The big ones that you see out at sea) He generally works around the British Isles, Ireland, Germany, Scandinavia and the Mediterranean.
So he has gone away today and he won't be home again until about February next year.
I have grown up with my Dad doing this job. He has had breaks from it every now and then but the majority of his working life has been on the sea.
I find it so much harder to say goodbye these days. I guess because I am older and he is older and it means more now.
So I am warn out today. I am also struggling with pain a lot today. That zaps loads of my energy too. I am trying so hard not to let it affect me, but it is taking up all my energy to do that.
It is SO cold too. I know I am tired and so I feel the cold a little more because of that, but it also affects my pain too.
Does anyone else have that? When it is very cold in Winter or very hot in the Summer, I suffer even more with the pain. People ask me which is worse, hot or cold, but I can honestly say that both cause me problems!
How annoying is that??
Anyway it was just a quick post today to wish my Dad a safe voyage!
Hope everyone is coping well with the cold,
Love & hugs
XxXxX
PS I must say a quick Thank you to all those who have been leaving comments for me. I really appreciate hearing from people and I do read all the comments.....even if I don't always reply to them.......sorry!!!
XxXxX
I'm having a really fatigued day today :(
Part of that is because I said goodbye to my Dad today, as he went back to work.
My dad is a Captain in the Merchant Navy. This means he works on cargo ships. (The big ones that you see out at sea) He generally works around the British Isles, Ireland, Germany, Scandinavia and the Mediterranean.
So he has gone away today and he won't be home again until about February next year.
I have grown up with my Dad doing this job. He has had breaks from it every now and then but the majority of his working life has been on the sea.
I find it so much harder to say goodbye these days. I guess because I am older and he is older and it means more now.
So I am warn out today. I am also struggling with pain a lot today. That zaps loads of my energy too. I am trying so hard not to let it affect me, but it is taking up all my energy to do that.
It is SO cold too. I know I am tired and so I feel the cold a little more because of that, but it also affects my pain too.
Does anyone else have that? When it is very cold in Winter or very hot in the Summer, I suffer even more with the pain. People ask me which is worse, hot or cold, but I can honestly say that both cause me problems!
How annoying is that??
Anyway it was just a quick post today to wish my Dad a safe voyage!
Hope everyone is coping well with the cold,
Love & hugs
XxXxX
PS I must say a quick Thank you to all those who have been leaving comments for me. I really appreciate hearing from people and I do read all the comments.....even if I don't always reply to them.......sorry!!!
XxXxX
Monday, 15 November 2010
Holiday Photos!
Not really a post today, just some beautiful photographs that we took while on our canal boat holiday in October.
We had a week on the Shropshire Union Canal where we went from Audlem up to Ellesmere Port and back again. We went with a company called Cheshire Cat Narrowboats, we can't recommend them highly enough.
http://www.cheshirecatnarrowboats.co.uk/
We stopped off at Chester Zoo, we looked around the waterways museum in Ellesmere port, we met some friends in Chester - yes Deb, that's you!
It was a fantastic holiday. If you have never been on a barge holiday and you fancy it, then they are the best! And even as a disabled person, I am still able to enjoy it.
Admittedly, I have two men with me who do all the hard work, but that's what a holiday is all about isn't it??!!
XxXxX
We had a week on the Shropshire Union Canal where we went from Audlem up to Ellesmere Port and back again. We went with a company called Cheshire Cat Narrowboats, we can't recommend them highly enough.
http://www.cheshirecatnarrowboats.co.uk/
We stopped off at Chester Zoo, we looked around the waterways museum in Ellesmere port, we met some friends in Chester - yes Deb, that's you!
It was a fantastic holiday. If you have never been on a barge holiday and you fancy it, then they are the best! And even as a disabled person, I am still able to enjoy it.
Admittedly, I have two men with me who do all the hard work, but that's what a holiday is all about isn't it??!!
XxXxX
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