Wednesday, 4 May 2011


The start of my year wasn't the best, but I would like to think that I have come quite a long way since then.
My pain issues haven't changed, but my attitude towards them have definitely changed. I am doing relaxation regularly now and I am sure that it has had a positive affect on me.
I can feel myself being able to relax myself during the day. It doesn't make the pain go away but it does help me deal with it a little better.
I am seeing my pain clinic doctor next Monday and I look forward in being able to tell him the steps I've taken to be more positive and pro-active!

Unfortunately, as well as being more positive I have also had some bad news.
I ended up back in hospital in February after I had a problem with my right eye, it wouldn't open properly. The eye lid itself was only opening about half way. I had a nerve flickering within the back of my eye. It felt really obvious to me but it wasn't visible. And I definitely had blurred & double vision.
I didn't know whether it might have been optic neuritis, so I went to see a GP at our surgery. She did some tests and checked my eyes, but she wasn't sure what was going on, so she sent me down to the hospital for me to get it checked out down there.
I ended up staying in hospital for another few days and while I was there they wanted me to see the eye clinic in the hospital. I had a visual field test and then I was seen by an optician who did quite a thorough check of my eyes.
He couldn't tell me what was going on but he was fairly sure that it wasn't optic neuritis.
It was left that another appointment would be made and for me just to see how things went.
I had that follow up appointment last week and saw the consultant eye specialist.
I had the visual field test again, but this time I found it much harder. My right eye felt like it couldn't focus properly so I found it hard to spot the lights.
After the test, I then saw the consultant. He did a really comprehensive check and sent me out for half an hour after he'd put some drops in my eyes to dilate them.
I went back in and he did some more checks and then gave me his conclusions.
Sadly he said that my eyes have been affected by the MS. The nerves in both eyes have been damaged by optic neuritis.
On the plus side, it's not too bad, but, of course we have no idea whether this is it or whether it
will get better or worse.
My peripheral vision isn't great with a mixture of blurred and double vision. And my eyes are very sensitive to light.
He's suggested reactor light glasses or tinted lenses and to wear a baseball cap in the summer! Which I actually do quite a lot anyway, I just didn't realise why I do it!
I was quite disappointed when he told me this news. I think because I had been told that it probably wasn't optic neuritis, I had put that to the back of my mind, so I wasn't expecting it to be that.

I am not dwelling on it though - or at least trying not to!!

We are continuing to be as positive and pro-active as we can.
We are continuing with swimming, which is going well, we are loosing weight - Martin has a head start but at least I have started now!!
And I have got back into making cards again. It is something I really enjoy, but I haven't done it for quite a while.
I kept thinking it was too painful and I didn't want to add to that pain. But one of the things my pain doctor said was that I shouldn't stop doing things I enjoy just because they hurt. I couldn't understand that to begin with.....why would I purposefully do something that I knew would cause me pain.
It is about quality of life and a thing that my psychologist calls opportunity cost.
Doing something I enjoy, but knowing that I will pay a price for it. The satisfaction I get from making my cards and the creativity I can use outweighs the pain that I get.......even though it really hurts!!

I must just add that two very good friends are getting married on Saturday - Matt and Claire, we wish you a wonderful day and a long and happy life together!
With love
Amelia, Martin, Barnaby and Kit Kat


  1. Interesting post - thank you for writing it.

  2. Rotten about your eyes- Herrad's first (pre-diagnosis) symptom was going blind in one eye (over night)and bad vision in the other. It is the one symptom that went away- she still has Weaker vision in one eye but that was the one that went blind. I hope it will get a bit less of a problem for you too. Glad to hear you are getting your weight down (I am struggling with a growing belly) and think you are very strong to live so positively.
    Lots of good wishes to Matt and Claire

  3. Hi Amelia,
    Lovely positive post thanks for sharing.

  4. Thanks everyone! I try to share the good and the bad!!
    Love & hugs