So Wow... its been just over a year since my last post and I have been meaning to restart the posts sooner but I'm here now and that's all that matters!
I think I had lost my way slightly... you know what it's like all those different roads that take you off on a tangent and then the feeling of the need to do nothing, think about nothing and give my body time to look after itself so I can start the next day.
I originally wrote this post on Tuesday (30th) whilst having a hot chocolate waiting in the local coffee shop instead of walking back home to manage my fatigue levels whilst trying to be at events for my son.
So lets get on with it - I'll warn you this is a bit more of a serious post than my others....
I'm forever being told that I do so much with and for my son, initially I didn't see it. As time has gone on I've begun to realise yes I do, do a lot with my son. But that still hasn't stopped me feeling the need to do a lot with him. I take him places, I show him things, I entertain his ideas and passions. In short I do so much with him, for him, often at a detriment to myself.
It wasn't until he had his 7th birthday and I was feeling a sense of accomplishment at having pulled it off - birthday cinema and meal trip with a few of his friends (ok 6 of his friends - what was I thinking?!?!?), a day out with my parents, and baking a rocky road brownie 'cake' for his actual birthday on time (I cheated with his meal out and bought a shop cake - how was I going to do a Stig cake any other way???), whilst knowing that for his birthday I was going to be in hospital for a good part of the day having my Tysabri infusion. So some of the feeling of pulling it off also stems from having a good friend take my son to a trampoline park for his birthday whilst I was in hospital and friends help with his birthday meal out, which I'm very grateful for - without which the sense of feeling like I've pulled it off probably wouldn't have occurred - that I had the insight....
YES I do so much with him particularly so when considering there is the MS to factor in, but it is because of the MS I do so much with him.
There is the guilt factor that I can't do some standard things with him because of MS stopping me, but what I suddenly realised was I know my future... to a degree.
Yes I hope for a cure and remyelination and this may be closer than ever before but its still not with us now. The Tysabri I receive has helped to control and slow down my experience of my MS, but I still get new symptoms - whether they were old symptoms there previously but have become more noticeable or whether they are small areas of new lesions I don't know.
With this thought I am making the most of now. I would already struggle going abroad for a holiday (I will note there are more factors than the MS alone - but the travel difficulties and the heat would be factors for me to consider due to the MS) - so yes we will do shorter trips to explore and experience things.
So whilst people tell me I do so much with him, they may not be aware the past school holidays were mostly spent indoors - but the things we did make it out for were so worth it!!! We both got to build a part of a big Lego sculpture! I mean how amazing is that!!! (Yes I actually love Lego!) And despite me falling over on a hill and not being able to get myself back up without others help we got the Geocache (note to self - go and sit in a coffee shop whilst the others go searching for Cache's that involve narrow footpaths on hills). Plus the experience and wonder of nature in England!
So in summary - Yes I do a lot with him - but I also get a lot of personal enjoyment out of these activities and teaching him things - and when taking in the fact so much time is spent taking it easy we are going to make the most of it when we head out and do things - these are the events you'll hear about - I mean who would want to hear about how I had a day of rest sitting on the sofa ;-)
