The post round 2 experience thus far has reflected round one for me.
Thanks to the steroids I still look a little moon faced and tanned. My body is running on the 'hot' setting and I'm somewhere between 'horrible bitch' and 'dribbling wreck' on the emotional scale.
Thanks to the Lemtrada I also have the 'itchies' which seem to appear about 23 hours after I took my last dose of 1 a day 24 hour Antihistamine and 1 hour before the packet says I can take my next lot.
We have had a long weekend here in the UK so today is my 'Monday' at work, no doubt by Thursday I'll have no idea what day of the week it is - that's how it usually works for me.
The weekend has been a nice mix of busy and active and lazy and sloth like. The dogs had some lovely walks, we went to a party on Sunday evening with some very dear friends where we used to live.
Monday was emotionally draining as it was a year since I lost my little brother Ian. My head replayed the events of last year in horrible detail throughout the day. I went down to our local church in the hope of being able to light candles for those I've lost however just like last October when I tried to do that on the anniversary of losing Mum, the churches were all closed. I spent an hour sitting outside the church breaking my heart once again unable to gain entry. To add insult to injury the sign on the door said 'Open'.
Year 1 of the blog has gone onto the Amazon Kindle store today as an eBook with all the royalties going to ShiftMS the registered UK charity which has been such an amazing source of information and support for me since I was diagnosed. Unfortunately since they won't just let me give it away for free on Amazon there is a cost of £1.99 for it (the file size dictated the cost) after US taxes (mandatory even for the charity :-( ......) ShiftMS get's all the money from each sale; so it's going to a very worthy cause. All my blood results month on month are in there and should be easy to locate with the indexing as a reference point if you're comparing progress and just life in general.
https://www.amazon.co.uk/dp/B01GE1V00M
My obsession with antibacterial gel seems to be getting 'worse' since I discovered a lovely Mango scented one at the weekend. I keep topping it up just so I can sniff my hands all day and think YUM - I seem to have mislaid the plot completely on that one - if anyone sees it running around looking confused and lost please send it back my way.
It's been over 9 years since I started my Lemtrada journey it's a marathon not a sprint and in my case it's got a spin off show too now I'm on Ocrevus. Best decisions I could have made, no regrets, fight for yourself because you're the best person to do it This is normally updated weekly please subscribe so it will tell you when I've updated it
Subscribe to:
Post Comments (Atom)
So MS is the thing I'm least concerned about now
Not something I thought I would be saying and also if I['m going to be brutally honest with myself it's probably at least half of th...
-
Apologies for the absence, a lot has happened, but also not a lot if you know what I mean. My back procedure was last Monday, very uneventfu...
-
Something I've noticed in the last couple of weeks is that not only am I wearing shoes with a 2 inch heel on them, but also that my now ...
-
I would put an update of what happened from last weeks post to the weekend, but I honestly can’t remember a thing about last week or ...
No comments:
Post a Comment