Tuesday, 27 January 2009

Tysabri or not Tysabri?

Hi all,

Firstly, can I just say how nice it is to get comments from people who read this blog saying that it cheers them up or they can associate with what I am saying. It is reassuring that there are people out there going through the same thing as me. I am always surprised that anyone reads this, I mean who wants to read about my life!!! But I love writing it....so long may it continue!

Secondly, as the title may suggest, I have been offered Tysabri. My MS has been 'highly active over the last year or so, so I am now eligible for something stronger that is hopefully going to stop the progression of my MS. But I know all these drugs are not without their side effects. I have to see my Neurologist and have another MRI scan before they can confirm I can have Tysabri. They want to check my brain to see that I have more lesions showing than last time, otherwise I am not eligible for it! I think that we are pretty much decided that if ok with all my checks, I am going to go for it. I want to give myself the best chance of fighting this disease.

Occupational Therapy have been back out to visit. We are now going to apply for a grant to extend the shower (so we can get a seat in it) and a stair lift. A stair lift would just mean I can go up and down the stairs with Ava and feel safe and not use up all my energy going up and down them! My MS nurse suggested I get a scooter to get out and about but I am not sure I am ready for that yet. They're for old people in my mind!!!!!!! I'm sure I'll come round to the idea sometime!

Photo update of Ava for you all!

Em xxx

Friday, 16 January 2009

My saviour...the perching stool!

It has only been 10 days since I last posted.....my resolution is still going strong! Occupational therapy came around to assess me and I have now got a few gadgets to help me. My favourite thing is my perching stool for the kitchen. It means I can cook, wash up and make Ava's bottles without having to prop myself up somehow! It means that Nathan doesn't have to do EVERYTHING! I also have a handle fitted in the toilet to heave myself up and they wanted to put an extra banister in but because these new houses all have plasterboard walls, they couldn't put one in (guess I'll have to save up for a stair lift!!). I also have a bath lift as the shower seat I wanted didn't fit in the shower. This is good, but those of you with MS will know that the heat from a bath is not great for the legs (well in my case anyway!). So longer term, they may look to extend and lower our shower so it is level to the floor and big enough for a seat. So all in all, I was very impressed with the help I received.

My darling daughter is just starting to wake so I'd better go and get a bottle ready for her. Just wanted to wish my mum a happy 'special' birthday for yesterday...although I did see her!
Em xxx

Tuesday, 6 January 2009

New Year's Resolution

Happy New Year to you all! As the title suggests I have a New Year's Resolution relating to the blog......to write posts more frequently. I feel very guilty that my last post was on November 21st as we are in January now. Oops! Well, where do I start?

Lets start with Ava. She is now nearly 3 months old and I can't remember life without her. We are getting smiles and giggles every day now and she can sleep well when she wants to! She was completely spoilt at Christmas, but thank goodness she didn't have many more clothes as she still hasn't worn all the clothes she was bought when she was born! This is a picture taken on Christmas Day:

My MS has not been great since she was born but I am thinking positive and hoping to build up my strength with physio and swimming. I have been injecting Rebif for a couple of months now and am still getting headaches occasionally through the night. They say to take paracetamol and sleep through the night but that is easier said than done with a 3 month old baby! I am also getting slight skin reactions around the injection site but they are nothing to worry about. My first blood test didn't show up anything so they are happy with the way my body is responding to the Rebif. I have had a second lot of steroids since Ava was born and I had another good reaction to them....but have since noticed the symptoms coming back again. My walking is pretty unsteady and I can't walk very far. The physio team think my balance is poor because my core stability has taken a battering with the pregnancy. So I am hoping that the exercises I am doing will help. I also went swimming last night for the first time since September and really enjoyed it. It was an effort to get ready, get into the pool, get dressed after and walk back to the car but I think it was worth it.

I am having a visit from occupational therapy today who are going to assess me and see if I need any equipment to help me around the house. I know they are bringing me a shower seat (as I get so hot in the shower I can hardly stand) and a perching stool to use in the kitchen. This will mean that I can make the bottles for Ava and cook tea without worrying about falling over!

I always read back through my posts when I've written them and I can never remember writing what I've written. It always sounds like someone else writing..not me! Anyway enough waffling,

Em x

An insight to my life with MS