December 2019.

The usual apologies for the break in communication.   But I am sure you realise that life has been rather chaotic with the house move.   But it’s done.  Not an experience I would wish on anyone when in the predicament I’m in and has only been achieved with an excellent removals team and lots of help from lovely, generous  friends and family who all performed wonders in their own ways.   I need to remind myself this blog is not about house moving although that has made an impact on my situation so it’s hard to not link my current state with that.  But here goes…..

I suppose my main preoccupation (besides packing boxes) has been getting the drugs sorted out.  That’s the prescription ones.  My penultimate visit to the GP in Faversham flagged up I was way over the maximum limit of the Pregabalin.  600mgs is the maximum dose per day and I had read it as per dose.  But, even on 1100mgs per day I was still in pain and, on strict instructions to come down to the maximum limit, I managed to start doing that a couple of weeks after we had moved (there was quite enough trauma going on without juggling dosages and different pains to try and overcome).  A month later I was able to report back to the surgery that I was down to 300mgs twice a day.

Having moved we needed to find a new surgery as we are too far away from from Faversham to be registered there.  This was a perfect excuse to register with a private GP who is in the next village from where we are now.   So, to cut a long story short, I saw him 6 days ago and I’m now on a cocktail of Pregabalin and Amatryptaline at night (as well as the CBD).  The first night was brilliant and I was even up and about and doing things by 10am the next morning.  But, I’m already recognising the desire and need to push up the dose.  Sounds familiar?  But to be seen by a physician who gave me more time than I was able to make use of, and look at me as a whole person as opposed to just what MS is doing to me, was really comforting.  

Enough of the pain killers;  onto the strategy.   About a month ago I saw my new NH consultant in Canterbury, Dr Hari Krishnan.  He immediately picked up on my desire to try the Ocrelizumab (the only drug suitable for PPMS and not exactly proven yet).  I know I need new lesions to qualify for it and after another MRI, which I had yesterday, I will know if I do have any new lesions.  So that’s where I am.  

No, here is where I am.  In bed, in my new house and loving it here.  Yes, we have lots to do, not only to make it suitable for my changing needs but to rescue it from several years of neglect.  The garden is rather like a jungle but already looking more under control and paths, walls and even flower beds are emerging from the nettles and brambles.   We are now safely fenced in (or rather Huffy is), and the men who did that cleared a lot of the thicket and fallen down trees which made an excellent start on the other clearing that needs to be done.  The annexe (now christened The Nesting Box) is being renovated and the bathroom is being fitted out with everything a wheelchair user needs.  With regards to the actual house we are changing our minds daily about what we want/need to do and will wait with interest to see what the architect comes up with.   In all honesty the only thing we are really missing is a boot room/utility/scullery area which we hope to carve out in one corner of the house whilst maybe pushing the kitchen out a little further.  We will see.    But this is NOT a blog about moving house.

I will not be so tardy with my next post, but I am sure it will be after Christmas and perhaps I’ll have some news about Ocrelizumab.  A New Year and maybe a fresh start with a new drug.  Who knows.