Week 21 and doing great

Hi ladies and gents hope you're all taking care of yourselves and each other.
Week 21 and I will be having my month 5 bloods being taken on Friday - Time to see that the scores on the door are for that elusive Lymphocyte count. I've spoken to lots of people who've been part of the clinical trials and all those with the 'best' response to Lemtrada have been those who's counts came back up slowly and surely - these people (according to them) are the ones who haven't needed a retreatment for many years, have seen their lesions disappear and have  shown 'normal' brain atrophy levels like non MS people have as they age (not that horrid your brain quickly shrivels and looks like a dried up walnut look of a long term MS patient brain)
So my message to the lymphocytes is 'take your time boys - the longer you take to fully return the more likely you are to have forgotten your previous bad behaviour' - apart from anything beside being cautious with hygiene and germy plague monster people the lack of some T & B cells has had nothing but a positive effect on my life.
The thing about Lemtrada is just like MS the journey you have on it is slightly different for each of us. My MS was pretty newly diagnosed although it had been brewing for a few years, my symptoms advanced very quickly as a result of 6 relapses in as many months. My disability level on the scoring mechanism was 0 for 99% of the time. Then there would be left leg is unusable day's where I was on sticks or limited to a wheelchair. My Optic Neuritis was 'in and out' some days my eyes were as rubbish as they've been all my life, some it was terrible I couldn't focus on anything, what little sight I had no longer made sense.
I've spoken to people who've been diagnosed for many years, who have been mostly dependent upon wheelchair / mobility scooter, have lost sight for weeks / months in one or both eyes, severe spasticity (I really hate that word) and people who have to self catheter several times a day. Some have seen amazing improvements - life changing ones over the 2 year course of treatment, some only small improvements, some people had treatment and sailed through it and others had the treatment and were completely flattened by it for weeks or months afterwards. The most we can do is prepare for the worst and hope for the best. Pace ourselves and celebrate the victories no matter how small or large.
A lady who was in a chair mostly before treatment celebrated making a cup of coffee last week - moving round the kitchen getting milk in and out of the fridge and getting the cup back to her seat with coffee still in it. This to me is awesome and something to be celebrated.
If I'm tired today because I did 15 hours of gardening and housework over the weekend and I couldn't do anything close to that before treatment then celebrate it. 'Normal people' get tired / exhausted doing this too especially if it's not a regularly performed activity. I keep stressing this isn't MS Fatigue - it's a badge of achievement I did so much physical stuff I wore myself out just like a 'normal person' would - and it's stuff I wouldn't have been able to do before I had the treatment..
I don't know if my little regime of Oxygen Therapy, vitamins and minerals, speed of treatment after diagnosis has all combined to make my experience of Lemtrada a rather pleasant one in comparison to the journey of others. My 2nd treatment next may might be completely different but I will continue everything I've been doing and plan for the worst just in case.
It seems odd to be planning now for my next treatment but it's only 7 months away now, even though round one was only 5 months ago (and it still feels like yesterday) but the project manager in me needs to be planning, preparing and mitigating risk - so here I go again on the planning exercise.
Something that is a little concerning is this impending Flu Jab on Friday - I've never had one before - but then I've never had the Flu either. It seems a little confused as to whether it's a live virus or not. Someone I know who also has MS had their jab this week and now has what I recognise as the classic symptoms for 'coming down with something'. I'm going to do some investigating on that one, I've called the doctors and they're calling me back with more information. They think that there might be more than one type - so that's probably with a question about it being live or not and are people reporting 'coming down with something' symptoms.
Apart from that all systems are operating within normal parameters for me. Life is good and long may it stay that way :-) xxx

Week 20 - recovering from France

Last week was a huge amount of driving, walking, eating lovely French food and soaking up the history of the D-Day landings in Normandy.


We had a lovely French 'Gite' (that's holiday rental to us less French types) which meant we had a base to relax in. In hindsight I would have booked one in the Port En Bessin or Bayeux area rather than one in Caen because it would have saved a couple of tanks full of fuel over the course of the week, but that's a lesson learnt :-)


The back end of the week was hard, with it being the anniversary of losing mum so close on the back of losing first my Brother and then Nana 2 weeks ago, I tried to go and light candles for them at the local church but ended up just leaning on the wall outside crying my eyes out all over Gareth as the church was closed and locked down - somewhere in the back of my head as I banged my fist on the door and looked up I could hear the dreaded answering service message.


'We're sorry God's office is now closed, Our Opening hours are 08:00 Sunday to 13:00 Sunday. We have no out of hours service as the Presbytery is an abandoned building outside of these hours there is nobody here who can help you, please call back with your emotional crisis at a time of our convenience'


All I wanted was 5 minutes to sit inside the church at the time my mum died, say a payer light a candle and feel close to the family I have lost - apparently in this day and age that is not possible :-(


MS-Wise, I know the candle has not just been burnt at both ends, it's been burnt in the middle too, I have a lot of sleep to catch up on and a lot of not doing much at all that I need to crack on with :-) I'm tired (NOT Fatigued) foot drop puts in the occasional surprise floppity moment, and my head seems to be full of soup. I have an oxygen treatment booked for tomorrow evening, so I've just got to drag myself through the next 24 hours and it will all be good :-)


Month 5 Blood and Pee tests are scheduled for Next Friday on the 16th at 9am with the added fun of a Flu Jab - apparently I now qualify as an 'at risk' person because of the MS, this strikes me as quite bizarre as my over active immune system has served me very well all of my life so far, the last time I actually 'caught' something was 2003 and I got Chicken Pox at the ripe old age of 32 years old :-) Apparently it's not a 'live virus' so I shouldn't have any problems, but I'll let you all know how it goes :-) - I won't be a happy bunny if it makes me ill I do know that :-)


It's been a while since I posted any daft pictures for everyone's enjoyment, my apologies for that, here's some for you xxx


Gareth - you have no idea how much you mean to me, and how much I appreciate and love you xxx



Ladies and Gentlemen - you know who you are :-)

So very true :-)