Wednesday 30 November 2022

Time for an update another round of Ocrevus in the bank

 So it's been a long time (again) I'm going to stop making hollow promises and just say I'm going to keep updating and won't forget you.

So what's happening?

Well a week ago I had round 5 of Ocrevus - fast infusion and I had the steroids this time too thanks to the nice HRT patches I'm on no overheating this time too. I had the usual itchy throat for a few minutes when they pushed it up to 300 but apart from that all very uneventful. New round is booked in for May '23 so here we go again.

The 5am start to get to Charing Cross by 7am so I can park worked like a dream especially since we're now back in 'normal' times so rush hour is a 'thing' again - randomly there was less traffic in rush hour than there was in covid times for the last 3 rounds - go figure ??!!??

I had my 2nd MRI of the year last month and the report came back as stable again - that means I've now hit 7 1/2 years without new lesions or active ones - YAY go me 😎

I've managed to purchase 1 Christmas present so far which is very rubbish but we will get there. The major stuff like orders for meat / awesome Italian meal for when we arrive in Wales the day before Christmas Eve and of course the Christmas from Majestic Wines are all sorted.

The stomach problems (not an MS thing) are slowly getting better. Changing when I eat has contributed to this - I'm pretty ruthless now about not eating for at least 16 hours before I leave the house so physically it can't happen. Meal sizes are now child size portions to minimise the cramping and bloat that comes with every mouthful. 

The levels of stress and anxiety in my every day life have reduced enormously in the last few weeks. Feeling a little more in control of my innards and being able to trust that I've taken the precautions I need to leave the house without fear of my guts betraying me has been big part of that. I guess all those tests coming back clear helped enormously too.

Gareth, the dogs and Murphy-cat are all doing great and enjoying life. I think we're all looking forward to the long break over Christmas and new year when we can all just relax and breathe (after the great UK road trip) 

Hope life is treating you well much love from me xx

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