Friday 31 May 2019

i am one thousand years old

It's true!

I'm having a lot of trouble sleeping at the moment. My sleep hygiene is good. Ok I probably read a little too much but in my head it helps. Although the evidence doesn't really back it up.

CASE IN POINT: last night after a lovely day out with the family in the fresh air with lots of walking, sleep was still impossible to find. It doesn't make sense.

I've started having a milky drink an hour before I go to sleep (Q.V. one thousand years old) - but sometimes I forget (see earlier point).

I worry that I'm now beyond help!

Another thing that happened yesterday was I went to the doctor to talk to him about the fact that my circulation is terrible (did I mention that I'm at least one thousand years old?).

- this has been a problem since at least my 2017 relapse when the Occupational Therapist came round to talk to us about adaptations in the house. She took one look at my toes and said, "You know they're not meant to be that colour, right?"

Yeah, I know, I know - that was almost exactly two years ago…

They can sometimes look like 10 little blueberries (no pictures because FEET ARE GROSS). And they can get so cold that they keep me awake. So I've been wearing socks in bed - and they're not even Business Socks, FoC fans.

Anyway, the doctor had a good look at my (gross) feet and told me to get some blood tests - after he gets the results he might send me for a consultation with a vascular surgeon.

I tell you, with the lack of sleep, bed socks and bad circulation, I don't mind admitting that I've felt sexier.

Obviously this track by the awesome They Might Be Giants has been in heavy rotation on my internal iPod.

Friday 17 May 2019

positivity warning

As prompted by Mrs D, who said that, as I'd been spending a lot of time working in health-related circles, I should focus more on some of the good stuff. So for what it's worth, here is a kind-of gratitude diary.


Obviously having a period of down-time coupled with working from home means that I've been listening to a lot of music, both old and new. According to my Last.FM account, these are my most played albums from the last 90 days:
With some friends I've gotten back into making iTunes-compatible mixtapes. And just like I used to do with actual tapes in my wasted youth my mixes are interspersed with bits of random film and TV dialogue.

If you're interested in hearing them, get in touch and I'll explain why the act of sharing music for which I do not own the copyright is all kinds of illegal (hem hem).


Despite my extended belly-aching on here and in real life, I'm doing ok. Working on the podcast, attending infusion clinics, spending time in hospitals, as always will remind you that there's always someone worse off.

Similarly, there are people who are a lot better off, but still. Things could be worse. 


My top recent picks include:
  • It Makes a Sound - this is ancient but my brother recommended it recently. A deeply weird mystery about music and memories. NO SPOILERS as I haven't finished it yet! 
  • The Adam Buxton Podcast - so obvious but he's just too good at what he does 
  • Beyond Today from BBC Radio 4 - their slogan is they ask one big question about one big story every weekday and it's always fascinating. One of my favourite recent episodes focused on the upcoming Eurovision Song Contest finals in Israel which included respected Middle East correspondent Jeremy Bowen explaining the conflict in 90 seconds 
  • Help I Sexted My Boss - not big, not clever, but charming nonetheless
  • The Archers - yeah, yeah, yeah, I know. But I don't pay attention to any other soap operas and this is mine. I even created a tribute to the actor who played Joe Grundy after he died…

Thursday 9 May 2019

where does YOUR anxiety go?

Mine goes directly to my legs.

I just did a search for "anxiety legs". This is the top search result:
It is common for anxiety to cause feelings of numbness and tingling. This can occur almost anywhere on the body but is most commonly felt on the face, hands, arms, feet and legs. This is caused by the blood rushing to the most important parts of the body that can aide fight or flight.
Sounds a bit like something we all know and love, right?

And that's my anxiety obviously. But where is it coming from?

Well, I've officially finished my job for the photography festival. But the lack of work isn't even the thing that's making me anxious. As I said before, I was hoping to have a bit of a break between jobs anyway, plus I still have my FUMS podcast work.

The Fampyra tablets are having their usual plateau at present. The MS Nurses have said in the past that this is just how it goes - it works great, then it just seems to stop. So I'm currently having a fallow week (all those GCSE History lessons on crop rotation obviously went into my brain somewhere).

Plus I'm taking an extra week between Tysabri infusions this month, in order to avoid paying an extra £300 for a short summer break (school holiday price rises). So medication issues might be a thing.

More than anything else, I'm just not sleeping at the moment. I'm averaging about 4-5 hours a night, and at least once a week I'll have a night when I just don't sleep at all.

Because of all this I had to cancel my appointment at the Gait lab to check in how I'm getting on with my FES (Functional Electrical Stimulation).

Similarly, I've had to roll back a little on my plan to go swimming more regularly once I was "between jobs" again. I describe my swimming technique as being loosely-coordinated drowning-avoidance at the best of times.

Lord knows what it would be like at the moment.

Image lifted from this great old series of UK Public Information Films - stick around for the brutal ending!