Wednesday, 26 August 2009
I couldn't believe that it was time for my Tysabri infusion again - where do the weeks go?
I had spoken to my MS nurse, a couple of weeks ago to say that I had decided I wanted a line put in, because all the trauma I have had getting a cannula fitted, was just causing too much stress. She told me that she had already got the ball rolling, so I felt better about that.
It's not just the fact that they have trouble finding my veins, it's the problem of the pain it causes, once the needle gets under my skin.
I didn't feel too bad yesterday, when we were making our way to the hospital. Luckily, Martin was able to come with me, which always makes it easier for me. He is my rock.
I hadn't slept that well, but I didn't feel too stressed because I was sure that they would sort out putting a line in so that it would make my life easier.
Am I really that naive?
We got to the hospital and they were having a particularly difficult day and we had to wait before they had space for us. It gave us all a chance to chit chat anyway!
One of the MS nurses turned up and we were having a chat to her too.
I asked whether the line situation had been sorted out. I was told that it had been but they were unsure as to whether it was really necessary!
I tried to just breathe, but I couldn't stop the tears from flowing. I felt that once again I wasn't being believed about how bad the experience really is for me. I spoke to her about it and she explained that they are worried about the risk of infection, because of having an open wound etc.
I understand that, but ultimately it comes down to quality of life, my life. I took the hard decision to go on Tysabri, with all the risks involved in that, but I now have an added stress about my veins and whether they will find them. Last month, I was already thinking about it, two weeks before the infusion was to take place. That is certainly not good for my stress levels.
Anyway, eventually, we got taken through and I was told the most experienced nurse would come and try to cannulate me. She arrived and looked at my veins, but she wasn't convinced. I put my hand in hot water for a while and then she tried.
She got the cannula in, but my God did it hurt. After about 5 minutes she had got it in properly, with me trying to breathe through the pain. It was really stinging though. It was decided that we would leave it for half an hour and see whether it would settle down. I was determined that I wanted them to try the infusion because I REALLY didn't want to go through it all again.
It is the first time that the area has hurt so badly, once the cannula has been put in.
Anyway, that was it, the cannula was in and so the infusion was put through. I had several moments where it was getting the better of me, but I wasn't going to say anything. I know this is naughty, but I really didn't need them having to redo the cannulation!
All through this, nothing was mentioned about a line being put in. I think this was because they had managed to get the cannula in, so there was no need for the line.
A nurse came up to me at one point, when she could see I was distressed. She couldn't understand why they weren't putting a portacath in. We asked her about it and apparently it is used for people who have regular infusions. She said that some people have had them in for up to ten years.
Why wasn't I having this done?
Has anyone out there ever had this done? Is anyone willing to advise me about them or share their experience on them - please leave a comment below, if you are!
Anyway, the infusion was done and finally after being at the hospital for about seven hours, we were allowed to come home!
However, I felt a bit let down, because yet again, nothing had been sorted out about a line or a portacath. So I am left, dreading my infusion in four weeks time.
I don't need this stress, so I decided to email my consultant and ask for his opinion. I will let you know if I get anywhere with it!
I have come over really tired again now, so it's back to bed for me!!
PS: We won the Ashes - yay!!!!!
PPS: Lots of wonderful photos of planes, from the Air Festival, to come!
Friday, 21 August 2009
I wanted to talk about my cats for a moment.
Animals are so therapeutic for people, especially those who are ill or have mental or physical issues.
We have two cats, which I am sure you are aware of!!
They are our babies. But they are more to us than just being our pets.
I grew up with animals in my life. My parents had Newfoundlands and they used to show them at dog shows - they even got to Crufts a couple of times! They bred from them too. But it was never as a serious, competitive business. The dogs that we had were doted on by all of us. They were a real part of our fami
When Martin & I bought this house, Martin suggested that we got a cat. I wasn't so sure, having grown up with dogs, but I agreed and we got our first cat - Pudney. I was hooked!
Within a year of being in this house and having Pudney, I started to get my symptoms, which eventually became MS.
I was off work, the job I had at that time, was in an office. So I was spending a lot of time at home on my own, because Martin was out at work. So Pudney was my company. He and I would cuddle up on the sofa together, and he was a great comfort when I was feeling ill.
We had Pudney for three and a half years before we lost him, suddenly. It was such a shock and he was only about 6 years old. We don't really know what happened, but he had breathing problems and the vet just couldn't save him.
We were distraught. Partly because it happened so suddenly, so we weren't prepared, but also because he was such a part of our family.
Some people need time to grieve when they lose a pet and can't think about having another one for a long time. We weren't like that though.
It wasn't that we wanted to move on and forget about Pudney - anything but that. But, the house felt empty. I didn't have my company and my comfort anymore. And Martin really felt it too. He has a real soft spot for cats, so having our own was really important to him.
We discussed it at length and decided that we really needed another cat. That weekend, we went to the Blue Cross rescue centre and had a look around. There were a few we could choose from, if we felt we wanted them. We said we would like to go for an older cat, because the younger ones always get homed easily, where as the older ones get left.
We were introduced to this very sorrowful looking cat. He was about six years old and at the time, was named Poppy, even though HE was a boy!! We were told that he had been with another cat, but that the other one had been homed. He had been with the Blue Cross for about four months, so of course, we felt sorry for him. We spent some time with him, he was very nervous and we could see he would need a lot of TLC.
We decided, he was the one. A couple of weeks later I bought him home. We changed his name to Barnaby, much more suitable!!
We have had him for about four and a half years now. He is still a big scaredy cat and he always will be. But he is happy and settled here. He loves his cuddles and can be a right character at times!
He is certainly not a replacement for Pudney. Pudney will always be special. He was our first cat and will always be in our hearts.
In 2007 we were thinking about whether we wanted to get another cat. We thought it could possibly be good for Barnaby to have a companion, after all he had come from being a pair anyway. We were very conscious of not upsetting him though.
We went to Animals In Distress, which is where Pudney came from. We had decided this time, that we would look for a young one and preferably a girl. This was so that it was totally opposite to Barnaby. We looked around and then came across a six month old who had just been brought in, the day before. She was called Kit Kat and she looked so cute!
We asked if we could go in and see her and see what she was like. The people on reception, were very wary of us being with her. They said she was vicious and not very friendly. We said we still wanted to try. So we did.
She was so lovely with us and let us cuddle her. Our minds were made up, we said she was the one!
So a week or so later we bought her home. We kept her separate from Barnaby, in one room and let Barnaby see that she was there. Then after a day or two, we introduced them and the have tolerated each other ever since!!
But why I wanted to do this post, is because I believe that animal interaction, is really important for people who have medical issues.
Certainly, from my experience, having the cats about, is company for me when Martin is not here, but they also provide some comfort for me too. They seem to know when I am having a bad day and will come and sit with me or let me fuss them and cuddle them. I can guarantee that I get a lift from that!
My mum had one of her dogs registered as a PAT dog. That stands for Pets As Therapy. She would take Jazzmine into the local children's ward of the local hospital and let them pet her and stroke her. It would give the children a real lift. And one of the children, who had some serious communication issues, would brighten up every time Mum went in with Jazzmine.
But not only was it good for the children though, it was great for my Mum, she got so much pleasure out of doing it, that it was really fulfilling for her.
An Update on Me!
I have my next Tysabri Infusion on Tuesday. I am praying that the cannula problems won't be so bad this time. We are looking at them putting a line in for me, so that I don't have the stress of them trying to find a vein. It would mean that I always have a line in though, which would need a lot of care and attention, but I will take that over the pain and bruises of being cannulated.
We are going away tomorrow for the weekend. Down to Bournemouth to visit some of Martin's relatives. We are really looking forward to it. Just to get away and have a change of scenery. I think we both need the break and need to clear our heads.
There is also an air show going on in Bournemouth this weekend so we will be spending the day at that on Sunday. Expect lots of pictures of planes next week!!
I am hoping that having a break, just before the infusion, will mean that I am a little more relaxed - we'll see!!
Wishing everyone a great weekend, I hope is a good one for you all!
Tuesday, 18 August 2009
I bit the bullet and went back to work yesterday!
I think I had set myself up to fail before I even started. I had got myself quite worked up about it over the weekend. I was concerned about whether I was doing the right thing, I was worried about what I would be able to manage and I was worried about not being able to do anything and where that would leave me.
In case you hadn't noticed, I am a bit of a worrier!
I wish that I could go through life, doing what is right for me and not thinking about how it will affect anyone else. But I can't.
It doesn't help me in any way, I know that, but I can't help the way that I am!
I have a big fear of letting people down. I do worry about what people think and that I am doing enough to help myself in the situation that I am in.
It's interesting, I was talking to someone today, who said that it sounds like I have low self esteem because of my fear of what other people think. I have never thought of myself as having low self esteem. I am perfectly happy with my life, I am lucky enough to have an amazing husband etc. But it's true, I do try to do what is right by other people and not always what is right for me. Wow, this is a bit of a journey for me!
Back to the subject in hand!
So, I felt that after six weeks off, I needed to go into work, to see what I could do and where I was with it.
Nothing had changed, as far as my symptoms from the relapse were concerned, but I had got it into my head that I needed to go and see what I could do.
Not my brightest idea!
I went in, but I was an emotional wreck even before I started! They had already said that I could just stay in the office and work on some customer letters. I did that and managed to get through them. The main problem I had, was that my hand hurt a lot from the typing.
By this time I had really worked myself up. I felt that I was being a problem to everyone and also, in the back of my mind, I couldn't stop thinking about, what would happen if I couldn't manage anything at work any more.
The personnel manager was great though. She really seems to understand what I am trying to do, but also realises that, maybe I am pushing myself a little bit too much.
She tried to get me to see the positive of what I had achieved. I had managed to get myself to work, and to do about an hour and a half of work. So that was good.
But I was worried - see that worry bee popping up again - that it wasn't enough and that I would be judged for it.
Of course, I haven't been judged and have been told that no-one is going to judge me for anything that I do.
She did make it clear to me that I had done enough for that day and that to deal with Wednesday - my next shift - when it came. She was talking sense and I knew that really.
With all my focus on getting to work and what would happen at work, I hadn't thought, at all, about how I would feel after I had been there.
It did affect me quite a lot. I was totally exhausted, both physically and mentally. I also had a lot of pain in my hand, which I kind of expected, but I wasn't expecting to feel so poorly. I was very wobbly on my legs and really didn't feel too well at all.
I am beginning to realise that stress isn't good when combined with MS and that by trying to work I am causing myself a LOT of stress!
So, maybe it wasn't my finest hour. I think my intentions were OK, but it was maybe too much too soon. I don't know. I'll wait and see how I feel tomorrow and make a decision about going back in then.
I would like to take this chance to introduce everyone to a incredible young man. I have "met" him and am following his story on Twitter.
His name is Dustin Kessler and he is a 16 year old, who comes from Germany.
He is, in his words, a heart case, who has had several surgeries. He has also just come out of a two week coma, following surgery to remove a brain tumor.
He loves drawing and music. I have seen a couple of his drawings, that he has posted pictures of, on Twitter. I have to say I am no artist, a stick man is about my limit, but wow, this guy is amazing!!
He doesn't have a great life expectancy, of which he is willing to talk about and admit. But the way he talks about what he has been through and what he is yet to face, I believe he is truly inspirational.
If you would like to check out his website, the address is
This next link is to a picture of a drawing that he did in 2006. It is of Captain America & co - It is amazing!
If you want to be inspired by someone who has been through more in life than any of us could ever imagine, then check out his blog. He is looking for as much support and feedback as he can, so this is my small way of trying to help him.
Keep inspiring people, Dustin, you are doing such a wonderful job of it!
Saturday, 15 August 2009
Saturday, another day, another challenge!
I got through yesterday. It wasn't without it's difficulties though.
After spending quite some time writing my blog post, which really did have a negative effect on my hand, I managed to slip on the stairs.
I am consciously trying to take care with all things at the moment, because I know that I am not steady on my feet and also that my hands etc aren't too great. But having said that, no matter how careful we are, it isn't always going to stop the little trips, slips and falls that we have.
My Dad, a few years ago, very kindly, put in a second banister for me. At the time, I protested, saying I didn't need it and that I could manage. These days I am so glad that he went ahead and put it in, because I rely on it heavily, to help get me up and down the stairs!
I was coming down those stairs, at home and I guess I wasn't concentrating as much as I should have been. My leg just gave way and I slipped down a couple of the stairs. I was able to grab the bannister's, which stopped me from sliding all the way down!
No real damage done, apart from bending back a couple of toes, which are bruised this morning. And also wrenching my back and right arm.
These are just the norm when you have MS though eh?!
What are people's thoughts about sleeping tablets?
I was given some by my doctor, because I wasn't sleeping well. I had actually asked for them because I didn't know what else to do. But I found once I had them, I was afraid to take them.
I did take them for a couple of nights and I experienced a couple of much better night's sleep. Then I didn't take them and I really struggled with my sleep again. I then really battled with myself and couldn't bring myself to take them again.
I know it sounds silly, but I was too afraid that I might get hooked on them and come to rely on them too much. So I didn't take any more, but I was still really struggling with my sleep.
I went back to my Doctor and explained the dilemma that I was in. Bear in mind that these were not strong sleeping tablets any way. His initial reaction was to say to me that there are worse things that I could be addicted to. A fair point I guess!
After having a proper conversation with him about my concerns and the fact that I was sleeping better with them, than I was without, he said that he wasn't too concerned about me using them. He said that if they were helping me sleep, then as a doctor he couldn't say not to use them. He said it's much better to get a decent night's sleep, than it is to spend the night, tossing and turning, and not getting enough rest.
So I am using them again. Not every night, because I still have a small niggling doubt about using them. But every time I do use them, I am able to get a decent night. When I choose not to use them, I spend the night tossing and turning, trying to get back to sleep.
One of the hard things that I find is, that I have to get up two or three times a night to go to the bathroom. And it's when I have got up and come back to bed that I have the problem. When I have taken a tablet, I can just get straight back off to sleep, but when I haven't I spend ages trying to get back to sleep.
Anyone else have this problem??
I also want to tell you that I have bitten the bullet!
I have rung work this morning and told the personnel manager, that I want to try and go back on Monday. I explained that things haven't really changed as far as the numbness and pain in my right arm is concerned. So she asked if I was going to be off for the next week. But I explained that I want to see where I am with things. I want to see exactly what I can or can't do.
She was great and said, that is fine. She won't put me on the rota, so that we can see what I can do, without the pressure of needing to be there. She said it doesn't matter then if I only manage a couple of hours of my shift and then have to go home.
I honestly don't know what I will be able to manage when I get there. All I know is that I am at the stage where I have to give it a try.
I have also only got three shifts this week and then I am off for about 10 days, which is why I thought it would be good to try this week, knowing I have got some more time off. I will be able to see what I can do and then talk about it during my time off to decide what I want to do.
I have mixed feelings about it. I worked so hard to get the job and to stay there. I have worked with the store to get my shifts as I need them and I enjoy having a job. I need having a purpose and I enjoy the company and support of all my colleagues. The money is essential too.
But, I suppose I always knew it couldn't last forever. I just didn't realise, I would be thinking about whether I could continue with it, so soon. Don't get me wrong, I am not thinking of leaving, but it is something I will have to confront at some stage and is that stage going to come a lot quicker than I expected???
Anyway, I wish everyone a happy Saturday, whatever you are all doing!
I read this post from a friend - Tara's blog -
Living Day To Day With Multiple Sclerosis.
Take a look at her blog -
She has posted a brilliant description of What Multiple Sclerosis Feels Like and I recommend everyone should read it, whether you have MS or especially if you haven't!
This is the link to that particular piece!
Thanks Tara, for finding this piece!
Friday, 14 August 2009
When I started this blog, I wanted it to be an up to date, informative blog about me and my experiences with MS.
I wanted to write posts on here regularly and get a real support network around me. It started off great. Unfortunately, I have let it slip over the last couple of months and only managed a few posts.
I can explain the last couple of months and I am hoping that I will be able to jump back on the blog 'horse' and keep posting more often from now on.
Multiple Sclerosis, is such a difficult and complex disease. And one of the hardest things to deal with, is that it can attack you at anytime, which can knock you off your feet and disrupt your routine, without any warning.
In March of this year, I had a relapse. It affected my entire right side, including going up into my face and it affected my hearing. This relapse, resulted in a consultation with my neurologist, which then resulted in an MRI scan and two courses of steroids.
The relapse itself lasted for about 4/6 weeks before the symptoms subsided. They didn't disappear completely. I was left with residual numbness throughout my right arm and leg. I also had pain in my right hand that would come and go. But, I was able to function, as well as could be expected.
The MRI results, showed that I had a few new lesions, so because of that and the relapse, I was offered the opportunity to start on Tysabri.
This wasn't an easy choice because of the risks involved, but Martin and I decided that I had to at least give it a try. I didn't want to look back and regret not ever knowing if it could have helped me.
I had my first Tysabri infusion on June 30th. It wasn't without it's hiccups - I am a nightmare to cannulate - but altogether, it wasn't too bad.
The disappointing thing was that about ten days later, I started to experience the severe numbness and pain in my right arm and hand again. It started on a Friday, so I left it for the weekend to see if it would subside. It didn't. If anything the sensations just got stronger and I also felt it in my leg and back. The only positive thing was that it hadn't gone up into my face.
I spoke to the MS nurse who said that yes it was a relapse, but that the good thing was, it wasn't a new set of symptoms. This meant it probably wasn't new lesions.
Because of the fact that I had already had two lots of steroids this year, I made the decision that I didn't want them this time.
I remember the date of the start of this relapse, it was July 10th.
I had struggled on with work at this time, because I am a bit stubborn like that. But it became clear to my supervisor that I needed to get it checked out, so I was told to take the week off and let them know when I had spoken to someone about the relapse. I haven't been back to work since. YET!
Fatigue has hit me hard, I never knew I could sleep so much. I was convinced I was just being lazy, but I do realise that it is just my body trying to protect itself.
The numbness and pain in my right arm and hand, have persisted and it is incredibly uncomfortable and I hate to admit, but it is quite disabling too. I am right hand dominant, so of course, everything I do, I do with my right hand...........OUCH!
I can't feel anything when it is in that hand. I can't carry a cup of tea without my hand shaking. I find it difficult to shower, to wash my hair, to clean my teeth etc. All the every day "normal" activities, that you do without thinking.
I am suddenly having to think very hard to achieve these things. And none of it happens without pain.
It is also affecting my use of a computer keyboard and the use of my iPhone! The iPhone has a touch screen interface and I am finding that I am not putting the required pressure to be able to access things properly.
Hence my lack of posts on my blog.
I am writing this post now, but I can assure you, it is not without experiencing quite a large amount of pain. But does that mean I should stop doing everything I enjoy?
It appears to me that if this relapse is going to resolve itself, then it is going to take a long time to do so. But I am also very aware that it might not resolve at all. It isn't that I am being negative, I am just trying to be realistic. There is a difference............I think!
So, how long do I wait for the relapse to resolve or not, before I say, OK, it's time now to try and get on with life, with a numb and painful right arm, that doesn't want to function properly.
I think that is where I am today.
I want to see what I can do. Yes, it may and probably will involve a lot of discomfort and pain. And I know it isn't going to be easy, some things may even defeat me. But at least I will have tried.
I am going to try and go into work on Monday. They have been fantastic whilst I have been off. They have assured me that my job will always be there, whenever I feel I am ready to return. I know that nothing has really changed since the relapse started. So I am unsure how much or what I will be able to do at work. But I will never know if I don't go and try.
It may mean that I only manage an hour of my three hour shift? It may mean that I have to work in the office, instead of on a checkout? Or I may be able to manage OK on a checkout? I just don't know until I try. And I AM going to try.
On the medication side of things, I am back on the Butrans patches that I have tried before. I am up to 15 mgs now which is two patches. They haven't taken the pain away. But I think that maybe I am able to cope slightly better? Along with those, I have started back on Gabapentin/Neurontin, depending on which country you are in! So add this to the Tramadol, I have been on for a long time and the Ibuprofen I am taking daily and you would think that apart from rattling when I walk, something would be helping with the pain. But I can't categorically say that it is, as here I sit, in agony.
I feel like such a failure!
Another interesting point, is that I had my eyes tested last week. It was just a regular two yearly check. I am short sighted, and that has deteriorated since last time. I asked the optician if that was just age, but he said no! It is probably a combination of age and MS etc. He has suggested that I now have yearly checks, as he wants to keep an eye on things - no pun intended!
The interesting thing was, they have taken a photo of each eye, so that when I go back next year, they have something to compare it to - a great idea - but once they were done, the optician told me that my left eye appears to be fine, but my right eye is showing some swelling behind it. My relapse is affecting my right side, any coincidence??
Because of the change in prescription, I have had to get new frames. It was about time, as I have had my other ones for nearly five years!
I have become completely addicted to Twitter. And it is another place where I have found new MS'ers. Another source of support. But not just for MS. I have made friends with an author and I am reading one of his books. And also another fan of cricket. We have frequently been tweeting during the Ashes matches. It is a lot of fun - and a connection to the outside world!
One thing that I have really noticed over the past few weeks, is just how much I am relying on Martin. He is having to help me in so many ways now, because of my difficulty in doing things with my right arm and hand. But as always, he does it without a word of complaint.
I am taking a lot of tablets and quite a few of them I take at night or just before bed. But this makes me feel very "out of it". So Martin is now helping me up the stairs and into bed. I have grumbled about this on a few occasions, saying that I am 36 years old, and I need help being put to bed. But Martin is always amazed when I say this. He says it's like every night it is a surprise to me that I need help. I guess what he is saying, is that every night it is a surprise to me that I have MS!
Will it ever NOT be a surprise? I don't know, but I think it will always be a little bit of a frustration to me.
I hope that everyone out there is doing well. I am determined to write more regularly on this blog from now on, so I look forward to hearing from you all and catching up with all your blogs.
Lots of love and hugs
Saturday, 1 August 2009
I guessed it was about time that I updated you on everything that has happened over the last week.
I am still in my relapse. In fact my hand and arm aren't getting any better at all. If anything I would say it is getting more and more uncomfortable and harder to do things with my right hand.
After speaking to various people, MS nurse, doctors etc. I am at the stage now where we have explored so many different forms of pain relief that people are running out of ideas.
So I am currently back on the Butrans patches that I have used before. They have increased the dose for me so I have 2 patches on at a time. I would like to say that it has improved things dramatically, but it hasn't. I think they have slightly taken the edge off the pain, but the pain is still there. And instead of it being constant severe pain, it is now constant pain with times where it is severe. So I guess that is an improvement of sorts!
I am finding it difficult to control my hand and arm, and by that, I mean it is still quite weak and so doing basic tasks take a lot of energy and concentration. Just little things like brushing my teeth, I don't seem to be able to control the brush so well, or turn the toothbrush. Even pressing the buttons on the remote control for the television, I have to look at where my hand is because I can't feel the buttons under my fingers. Using my iPhone, which is my life line, I have noticed that with my right hand, I am not able to put the required pressure to access applications easily!
It can be very frustrating when a "normal" activity suddenly becomes something that you have to think about to be able to complete it.
I haven't been working since the middle of July. I have to say, they have been very supportive and quite understanding. I had been going in, when the relapse first started, but I was not completely sure if it was a relapse and I wasn't ready to phone the relevant people and ask the question. So I was struggling to complete my shifts and I was getting more and more frustrated with myself. Eventually I was told to go and find out what was going on and I haven't been back to work since.
I went in to see the occupational health advisor on Wednesday. I found it quite helpful and it made me realise that I don't want to return to work until I know I'm not going to be off again. I want to go back and stay back.
But I am desperate to get back to work. I enjoy having a purpose and I like the interaction with my colleagues. Occupational health have advised that I am not fit to return to work yet. Which I guess I knew, deep down, but I was hoping that I would be able to manage it.
My problem is that I push myself. It's not a bad thing, in some cases, but it does mean that I try to do more than my body is able to manage, on a lot of occasions. And I can suffer for that afterwards. My head says that I can return to work but my body is saying no way. And I generally listen to my head - not always the best idea.
Having said that, I am listening to people around me at the moment, and trying to give my body a chance to rest. I want to go back to work and I'm sure that I will be soon. But with my arm the way it is, I'm not sure how much I would be able to do.
I am going to try and get a Doctors appointment on Monday and discuss the situation with them.
One of my concerns is, what if this arm situation doesn't resolve itself? What if these symptoms don't ever improve? I know it is a question we all ask ourselves when a relapse happens and it affects us in ways that are scary.
Generally with a relapse, things are supposed to improve over time. That can be with the help of steroids but I am not having them this time. So I have this nagging doubt in the back of my mind, that my arm isn't going to get any better. If that was the case, then I will need to find a way of continuing on with work and life, with a weak, numb and painful arm and hand. So therefore I will need to just return to work and try and get on with it. A difficult problem that is going round and round in my head!
Tysabri Infusion Number 2
On Tuesday I went down to Plymouth again, for my second Tysabri infusion. I couldn't believe that four weeks had gone by so quickly, but I think my mind was so occupied with the relapse, that I hadn't had time to think about it.
It was a little frustrating that I arrived at about 8.50am but it wasn't until about 10.45am that anyone started to try and cannulate me. This was only frustrating because I know how difficult it is to cannulate me and I knew they would need extra time to do it!
Unfortunately, this proved to be the case yet again. Two nurses tried and failed, so they called a doctor up and she couldn't manage it either. You can imagine how upset I was by this point. It was so painful. My skin is so sensitive, which means putting a needle anywhere near it, isn't pleasant.
The problem is, that apparently I have very small veins and they are buried quite deeply.
The doctor suggested putting my hands in a bowl of hot water, because they felt quite cold. So I did that, and when the doctor returned, she was able to get the cannula in.
We are going to see how it goes next time, because a suggestion has been made that maybe I need to have a line put in, so that I don't have to go through that trauma every four weeks. This was one of my worries before I started the Tysabri, but I don't think the nurses realised just how bad I was. Now they have seen how bad it is and realise that it is not an easy situation to be in.
Anyway, the cannula was eventually done and so the infusion was put through. I didn't have any problems with the infusion itself, although by the time it was done, I had a headache and felt very tired. This mimicked what had happened last time.
I got home and just crashed out for the rest of the day. I slept through until about 11am the next day. I probably would have slept longer, but I had my appointment at work so I had to get up!
I am happy to say, that I feel, so far so good. I haven't really suffered from any side effects, other than the tiredness which tends to last for about 24 hours after the infusion.
I can't say that I have noticed any differences within myself, but after only two infusions, I didn't really expect anything!
So I am just ploughing on, with the hope that being kind to my body and giving it some rest, will aid this relapse into resolving itself.
I am trying to be positive about it all, that, I can assure you, is far easy said than done though!