Friday, 30 June 2017

steroids days 2 & 3: night-time stress, muted positivity and a PIP-related question

As previously stated, on Day 2 I woke up fine after a good chunk of sleep. Otherwise nothing much to report apart from I had a visit from Mrs and Little Ms D which was absolutely lovely. They were pleased with how well I was doing. Truth be told my legs didn't feel quite so switched on - nowhere near as bad as they were pre-steroids, but not quite as non-shuffling. Might just have been our perception? Or even just the flappy slippers I was wearing?

Sleep was hard to come by because STEROIDS but also because I had a few thoughts rattling my noggin (which I couldn't do a damn thing about at 4am):
  • My parents had to cancel a holiday to look after me this week - they only had to pay for flights but still. They rescheduled them to this coming Monday which is the day after I finish this round of steroids. When I finished last week's heavy-duty steroids that obviously led to a rapid two-day decline and immobility. So obviously I was freaking out about that. Until I spoke to them and they said that of course they weren't going (see 4am above)
  • My wife has had to take the last week off work due to stress (OBVIOUSLY) so I'm worried about her. Her mum and dad live really close (like, across the road) and I think it did her good to see me up and about yesterday. But still - I worry.
  • I have a PIP assessment (at home) next week today. Yes, this could be - ironically - the perfect time to have this visit and Mrs D will be in attendance too. But just how much stress can we take? Furthermore - and here's the question for YOU - how should we prepare?
I've already done a bit of light exercise today - just a walk around the garden as it's the first day that it hasn't been raining (I always hated Thomas Hardy's use of Pathetic Fallacy, so this has been particularly annoying). I'm keeping on with regular physio exercises as I arranged yesterday to have an open appointment until we have a better idea of what things will look like next week). The wider plan is to spend a bit less time being totally static (although my dad and I have come late to the party and are binge-watching Game of Thrones).

Here's some good news:
  • After nine months of applying, chasing, mis-communication and MORE chasing, earlier today Mrs D sent me pictures of markings for a disabled parking bay outside our house. The street we live on is busy (plus points: I learnt to be a Parallel Parking JEDI while I was wooing Mrs D) but is also the closest street to the City Centre which doesn't have a residents-only parking scheme. Leaving the house can be incredibly frustrating. People will do circuits in order to find a space and then park really, REALLY badly - one car (owned by someone who walks into town to work or shop) taking up a space which could easily house three is a regular thing. This is going to really help.
  • I've spent a bit of time on the phone to my GP about getting the Community Occupational Therapy team out to do an emergency assessment of our house and make some recommendations about possible adaptations - something which the MS Nurse spoke to us about on Tuesday. I've just got off the phone to them, they're coming out next week, which is great. Hopefully I'll be in a position to not need them soon but at least they'll be in place for the (wearyingly inevitable) next time.
  • As I mentioned in a comment to the last blog, I start therapy in a week or so which will be good for me.
As well as GOT (Grade-A NONSENSE but entertaining enough) I've been listening to the S-Town podcast - something I've had lined up for ages but still, late to the party again. It's bloody brilliant and incredibly moving - HIGHLY RECOMMENDED.

If you've read this far, don't forget to give any advice about preparing for our PIP assessment! Thanks.

2 comments:

honeysuckle said...

Hi Steve,

S-Town, brilliant! The accents alone make it worthwhile.

Your families sound ace. Best of luck for next week, and the intervening days, obviously!

Honeysuckle

stevedomino said...

Thanks, Honeysuckle - S-Town is brilliant but [SPOILER ALERT] it's so sad that he was unable to see the difference he'd made to people's lives and the high regard he was held in. People's inner lives are fascinating.

Re: the accents - the rewind button has been utilised on multiple occasions!

Cheers.