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?).

FULL DISCLOSURE - 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.

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.

Music

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:

• Self Esteem "Compliments Please" - gobby pop music from Rebecca Lucy Taylor (previously one half of indie-folk mopers Slow Club)
• Jeff Tweedy "Warm" - grumpy old-man music (what?) from one of my favourite grumpy old men - nowt new but still lovely
• Animal Collective "Sung Tongs" - I've been getting my freak-folk flag on a bit recently. I bought this album when it first came out and didn't really get it but it's actually great and bonkers 
• The Velvet Underground, the deluxe expanded issue of their (best) self-titled third album - just wonderful, loads of previously unreleased stuff and live tracks 
• Tiny Ruins "Olympic Girls" - kind of like a groovy female Nick Drake - I know nothing about this artist, I just heard a track by them on BBC 6 Music 

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).

Health

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. 

Podcasts

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…

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!

if at first you don’t succeed...

... give up.

Not really, obviously, but it's bloody tempting.

I'm (genuinely) limping towards the end of my contract. But because you can't be too busy, I've recently applied for a couple of other jobs.

One I didn't get further than the application but the other I got to the second interview stage. It was between me and one other applicant. And - ta-daah! - they went with the other guy. To add insult to injury, it's basically the same job that I'm doing currently for a different artform. So that's a thing.

However if I'd been successful it would've meant me doing both jobs at the same time which would be pretty hardcore. Plus Mrs D is very keen that I have a little break when I finish. Especially because I had my most recent relapses within a week of finishing a previous freelance contract.

And truth be told I'm feeling pretty wrung out at present. A combination of long hours and - annoyingly - sleep being hard to come by.

Case in point: I finished writing this post during my most recent Tysabri infusion having had no more than thirty minutes sleep.

So a short break won't do me any harm.

Here's a moment of Emo Zen! 

listening to this song...

 

... looking out of this window in the hospital

 

#sadface

#buttface

#growup 

i’m on the FUMS podcast!

In a continuing showcase for my shameless oversharing and self-promotion, I thought I’d let you know that I’m the guest on the newest FUMS podcast episode.


This chat was recorded a couple of weeks ago and, as is obvious if you listen to it, it was a lot of fun.

FULL DISCLOSURE: as editor I took out a few of my more irritating space-holder noises and phrases, plus I removed a whole section of chat where I got something totally round my neck and misremembered a few facts. It seemed easier than stealing Adam Buxton’s Fact-Checking Santa character wholesale.

I’m the first guest in a series where Kathy talks to MSers from around the world to find out about their experiences of diagnosis and treatment. Obviously she’s based in the US so there are some fairly obvious differences between her experience and mine in the UK.

But I’ve heard the next episode which features Robert Joyce from A 30 Minute Life and, even though he's only from Ireland, the variation between the care we receive is pretty staggering.

diet and MS (again)

We know you shouldn't be too quick to believe everything you read online. This is why Snopes exists.

But this is particularly true if you use the interwebz to research a chronic health condition.

God knows I've talked about this on here often enough, and not just in relation to the cult-like mania of people who follow certain lifestyle choices.

I've weirdly found myself talking about the OMS diet quite a bit recently, with friends and family. Recently, Mrs D met up with our old friend and colleague I've mentioned before - who has now been diagnosed with MS - and she is doing incredibly well on the OMS diet and staying healthy which is brilliant. She's had a hard enough time dealing with a diagnosis which is the same as that which killed her mother. So more power to her.

Obviously it didn't work for me - whether my relapses were down to increased stress after losing my job and the related anxiety, or Tecfidera not working out for me, I don't think OMS helped. So I've been meat-free ever since.

So imagine my complete lack of surprise when I noticed this link doing the rounds at the weekend:

http://meatheals.com/category/nervous-system/multiple-sclerosis/

That's right. Eating all the meat and nothing but all the meat is the only way to go for a healthy life with MS now!

Oh. You didn't know? Where've you been?

Anyway it was good enough for Elvis, right? Didn't do him any harm did it?

Wearyingly predictable though this might be, it was obviously only a matter of time, right? Truth be told, I'm a little ashamed that I didn't see it coming.

I'm sure that the MS Society and MS Trust are looking into this already. But if anyone from either organisation is reading this (and really, why wouldn't they be?), please can you do some robust research into the possible benefits (or otherwise) of diet.

This sort of 'solution' is so attractive. The tools to take control of this aspect of our lives are so readily available that it's no wonder people are willing to try something - anything - like this. There might be something in it (and how great would that be?) but at the moment, no-one really knows.

So currently, vulnerable people with chronic illnesses are effectively experimenting on themselves.  

Happy Birthday, The Internet! The unruly and untrustworthy stepchild of sensible and measured discourse! 

the simplest option

the blogger’s complaint

The work I've been doing has gotten crazy recently. Hence the extended radio silence. I knew it was coming but still it was surprising nonetheless.

The festival I've been working on opened last week. My contract is for a set amount of days over six months so I don't have a huge number of days left. The festival itself finishes mid-April but they want me to do some work on the evaluation. So the number of days I'll be working each week will necessarily get fewer.

There have been a number of long days and weekends which I guess is par for the course. But it doesn't stop my family worrying that I'm heading for a crash.

On the other hand, my work on the FUMS podcast is like a dream come true. I love it and I feel like I'm pretty good at it - Kathy tells me so, anyway.

Coming up the pod will be featuring interviews with people with MS from around the world, talking about their diagnosis and treatment stories. Obviously Kathy is based in the US so her intention is to show how F'd up their health system is. She started off by interviewing me and this gave me a good opportunity to bang on about the NHS again.

I really enjoyed chatting with Kathy and I'm a shameless self-publicist. So I'll undoubtedly share it here once it's published. Although obviously you should already have subscribed to the podcast,right?

I just hope I don't hate the sound of my voice so much that it's the shortest interview yet. Or at the very least very presenter-heavy.