Tomorrow will officially mark my first monthly blood test post treatment. It seems very off to be looking forward to having another cannula put in and several vials of blood taken and then trying to pee into the tiniest pot in the world (This is not a simple task for a woman .... messy to say the least)
It will be interesting to see what my cd counts are, particularly the CD4 one and the lymphocytes, I can't claim to be a layperson on the subject but I do have a very good resource to compare them to on Emma's blog and I'm hoping if I need some advice on them she can help.
I have fatigue in my limbs today - I have not had an oxygen treatment since last Tuesday and it's been a few months since I've gone this long between them. I have a session booked for tomorrow afternoon at 13:15 so I fully expect that to make me feel epic again as usual. On the bright side it means I've gone more than double my usual time between treatments post Lemtrada and not had the usual 'hitting the wall' sensation so if Lemtrada and those vile tasting steroids are doing their thing then that's a great improvement (I'll take it as an improvement - play the glad game my Dad always said - I'm glad something is better) - plus there's the added bonus that if after the Oxygen Therapy tomorrow everything is great again and I can get 9 days between treatments then I KNOW it's benefiting me and I KNOW that there is another improvement as I can last nearly twice as long on the benefits from it.
It's going to be a hectic one this weekend, so apologies in advance if I'm rubbish and don't give any reports. Saturday daytime will involve getting / ordering new garden furniture and scanning photographs of my brother to make up a big presentation that will be on the big screen at the wake showing pictures of Ian through his life with his wife, family and friends. Saturday evening is my lovely friend Kate's birthday celebration which will involve much fun as it does every year. Sunday we have a field trip to the Midlands to go and look at the venue where one of Gareth's friends from his army days is getting married on July 6th. We are the photographers for the day - bridal prep through to first dance (at which point I will be having a large white wine please)
Somewhere in that I need to do something with my hair - I highlighted it at home last weekend and it's gone rather a scary yellow colour mostly with the odd zebra stripe of the original mouse colour coming through - I'm old enough to know better but still cheap enough to try it myself - some lessons I never seem to learn properly.
So for your enjoyment todays pictures come in 'scary and scarier' - when you're thinking 'Damn she looks rough' please remember I've only just started work, I've not had coffee yet (so technically I'm not even alive let alone awake) and makeup is something I have worn once in last 18 months - and yes I probably do need some kind of eye treatment as the bags under my eyes seem to have become suitcases on wheels xx
Pics for amusement and inspiration below
Goodness knows poor Gareth deserves this so much
Positivity is a state of mind - play the glad game with everything in your life xx
Dad used to say be determined - dig your toes in to your neck (it made sense when I was a child) spread your roots and grow
But then again I love Minions - so I'm clearly as mad as a box of hot frogs :-) xxx
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
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