Friday, 14 August 2009

Difficult times

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


  1. I am so sorry .. that this has happened .. to you.

    ( I was diagnosed with ms .. years ago .. later told I didn't have it .. later .. I was told I had Transverse Myelitis .. went into a coma due to my reaction to rebif .. after I recovered was told I just have bad migraines due to the coma ... have a weakness on my right side that will not go away ... I can so relate to what you are saying)

    I so hope that you recover ...

  2. Hi Amelia,
    Really sad to hear what is happening to you.
    Can't you take the last pills in bed then you can relax after taking them.
    Hope your relapse stops soon.
    Difficult to need help but brilliant Martin is there for you.
    Hope despite it all you have a good weekend.
    Take it easy dear friend.

  3. Thanks for sharing your journey with MS. My disease Dejerine-Sottas also has deteriorating myelin.