Tuesday 23 June 2015

Mid week 5 post Lemtrada update

Hi guys and girls, hope you're all germ and relapse free or looking forward to being so.
I'm happy to report that all the improvements in MS symptoms that I've logged here previously remain with me, the feeling is back (mostly) in the places that were comfortably numb, No fatigue or cog-fog and going to the bathroom is now a rather mundane activity. All in all I feel great physically - I'm not about to go and apply to run a marathon or anything, but I feel like I have an unlimited supply of 'spoons' - The 'Spoon Theory' is available to read here, it gives an interesting insight onto the way people with MS need to manage the energy they have available throughout the day. Thanks and credit to Christine for this http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
On a sort of things that you need to know about how the treatment may affect you afterwards, I have a little something to report. I seem to be running a little 'warm' these days - okay Gareth says I'm like a furnace all the time, but now I can feel it too, I wake up and even my head and hair feel 'sweaty'. To be honest I've been like this for the last 3 weeks, and hadn't actually put it down to the treatment at all, I'm 43 - women get like this at 'a certain age' and I'd been thinking of it as 'having a granny'. It's not bothering me or causing any problems but I think it's really important to share all of it, the good, the bad, the ugly and the slightly moist :-) forewarned is forearmed, what might be a slight inconvenience for me might be a much more significant issue for someone else, and if we're expecting something then its much less confusing and scary when (if) it happens.
I've offered to talk today to another person planning to have Lemtrada at Southampton, more than happy to talk people through what happens, when it happens, what the nurses / food is like etc, and how it can affect you, things to be aware of, like Paracetamol for the headache, asking for more IV steroids when (if) the rash appears and just stuff in general.

In other news, today would have been my mum's birthday, June 23rd last year, my husband, my mums sister and I went and played golf at the club mum and dad were members of, met my brother and his wife and put mum's ashes with my dads. It was fathers day on Sunday and tomorrow is my brothers funeral. This week is incredibly painful emotionally, I feel like I'm on the brink of a panic attack half the time or a gibbering wreck the rest of it and I feel like I'm going to throw up constantly - it's grief and shock not the MS I know that, the MS is the least of my worries right now. Tonight we drive up to the Midlands to stay with friends for the next couple of days. I'm taking gallons of anti-bacterial gel with me and it's going to be hard telling people who look sick / have kids who are sick etc. that I'm sorry no hugs, definitely no kisses or even if they're well saying 'I'm sorry it's nothing personal but you've touched me and now I have to wash you off me and anti bacteria myself against you' but it will be okay(ish)

Love, germ free virtual hugs and positive thoughts to you all xxx

No comments:

Post a Comment

Far too long between updates (again)

 So what have I been up to in my long absence and how have I been ? Well the Crohn's is under control and back to how it's always be...