Monday, 20 November 2017

1yr 25wks post R2 - New MRI needed and new Nuro to 'train'


Month 30 stabbing was completed last week by the nurse at my GP’s surgery. A one stab wonder as always (although I have bruising this time)

A week of work and planning for me this week. The planning was for the expected over-use of energy during the weekend. The paining of the new sun room (sounds better than ex-conservatory) so that we can actually get the furniture back in there and get our house back. A minimum of 2 coats required – probably 3 it was going to take a lot of the weekend.

Gareth took the ‘up top’ bits, the ceiling and ladders part – given that I’m pretty clumsy at the best of times, which left me with ‘down low’ all those fiddly skirting board, round the plugs under the window sills parts. We got 2 coats done over the weekend and now the plaster is covered it’s looking pretty fantastic, but oh man it was hard work. I’ve slept for England when I’ve sat down to rest. Literally sit down, lights out, wake up at bed time then go sleep some more.

It’s always been this way when I’ over do things and expend too many ‘spoons’ doing stuff. On my more prepared endeavours I planned in advance for my ‘downtime’ afterwards and this was a well planned event. I’m back in work this morning feeling human even if I did sleep away the bits of the weekend that I wasn’t sleeping in.

I also now know just how terribly out of shape I have become and need to address this and my weight with a heightened sense of priority. So much so that waiting for new year isn’t an option – I’ve started this morning and want to have lost a significant amount before Christmas or I won’t be letting myself have time off during Christmas.

Today is the actual 1 year and 6 month anniversary of completing Round 2 (may 18/19/20 2016) (yes I know I’m very odd that I keep this level of information in my head) I was plumbed in with steroids flowing at this time and the final shot of the good stuff was so close to being done. It’s quite a fond memory really but then most of my post treatment memories are good ones.

I have an appointment on December 27th with a neurologist I’ve not seen before and am currently chasing down the MRI I need before the appointment. I’m moderately concerned with some changes of late that there might be something going on that I need to know about. It might just be my weight and unfitness, I can deal with those, but rather than worry myself into a wreck I want the alternative ruled out or confirmed.

So what’s changed ?

·        I’ve been having some minor but quite annoying spasticity in my lower legs. I’ve seen a physio and been given some excercises, and if I’m brutally honest I’ve not been doing the exercise anywhere near as often as I should. When I’m watching TV in the evenings with my legs stretched out, my left lege in particular has started making ‘ankle jumps’ where my foot starts bouncing around randomly pulling back and releasing repeatedly for a few seconds.

·        The bathroom thing …… it’s been getting worse again to the point I’ve requested an appointment with the team to see if there’s anything that can be done (this could also be a ‘middle aged’ thing but I want it ruled in or out as such as quickly as possible.

There is so much I can do if something has changed, I’m not worried if I need to do more, just proactive enough that I’m not putting it off or sticking my head up my ass in denial and hoping it goes away on its own.

If there is activity then it will be time to plan a new battle, another round of Lemtrada hopefully. If not then there’s Ocrevus, HCST Cladibrabine, decisions decisions. It’s all a bit moot until the MRI and Neurologist review - I might just be imagining things, feeling a bit old, fat and creaky and trying to blame MS for it. I’m also a little nervous about having to get a new neurologist trained up to ‘manage me’ …… I know I’m a little difficult, opinionated and downright pig headed with my opinion of how to deal with this MS nonsense.

I’m hoping for those ‘half way to the end of the blood test regime’ results today after Friday’s stabbing. I declined the urine test when I was there, TURN AWAY NOW GENTLEMEN – it’ TOTM, and as middle aged women tend to this month is an absolute horror – I’m bleeding like a stuck pig and pretty much can’t guarantee any kind of sample that won’t be horribly contaminated with ‘proteins’

All in all life remains awesome, I’ve got this shizzle under control and everything is shiney.

Take care of yourselves xx

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