Friday, 19 May 2017

and then three come along all at once

In a manner similar to the proverbial bus, I've been waiting for ages for a number of specialist appointments and have now had three in the last couple of weeks.

1.  Wheelchair clinic
Because my old NHS wheelchair was a behemoth (code name Dreadnought or The Destroyer), I've been wanting to see if there was a different option that (a) would fit in our car more easily, (b) was a bit lighter, and (c) I could propel myself - because, y'know, INDEPENDENCE.

So I recently went for a wheelchair assessment. It turns out that, when you're 6'3", wheelchairs don't get all that light.

But my new one (which arrived earlier this week - God bless the NHS) does come apart easily so it should help. Plus the wheels seem to have some kind of coating on them which means it's easier for me to grip them and, hopefully, propel myself. RESULT.

Although (FULL DISCLOSURE) it is currently taking up the position vacated by my old wheelchair, in a cupboard under the stairs. Baby steps, yeah?

2. Physiotherapy

Yep, I'm going round again - I think this is my fourth time, still working on strengthening my core and sorting my wonky legs. I've only had a couple of sessions so far (and one of those definitely had the emphasis on "Therapy" - God bless the NHS) but plenty of stuff to work on.

And if I can't find the time to do my exercises when I remain resolutely BETWEEN JOBS then there's no excuse.

3. Orthotics
I saw them a while ago (turns out it was seven years ago) when I was fitted with a delightful support stocking for my truculent westward pin. This appointment was a bit more challenging, as the person I saw said that my right leg is now as bad as lefty was previously (hence a new delightful stocking).

Westy has gone even further downhill so I've been given this monstrosity, called an Ankle Foot Othosis:

It's basically a really intense splint which fits inside my shoe and helps to give that much-needed kick. I have to wear it for an hour a day at first in order to get used to it - it's really exhausting and I'll need to inform the DVLA before I try to drive with it on but it DOES help. Bastard.

I'll be taking it to my next physio session as a challenge - "what can you do to keep me from wearing THIS?"

PS - this was given to me on the spot at no cost - God save the NHS.

Monday, 15 May 2017

will (home) work for food. and money

So it's been 5 months since I left my job. I've been doing more of that freelance work I mentioned before - certainly more than I was expecting, which has prevented me from doing much of anything else.

Aside from that, one of my other top time sponges is the filling-in of endless benefit forms - Housing benefit, two separate forms for PIP,  two for ESA so far with the promise of one more to come. Joy unconfined.

Which doesn't leave a whole lot of time (or energy) for looking for work, which has been on my mind a lot recently. This is because, leaving aside the aforementioned 5-monthiversary, I've realised that I can't really envisage a time when I'll feel able to work full time again.

When I look back to last year, I wonder how I managed to drag myself to work every day (without fail), even without considering the extra hours, weekend and holiday work, or how so very dispiriting that whole process was.

I feel better in myself but I think I'm spending a little too much time in my own head at the moment. Having said that I can't see me wanting to do any work which isn't home-based. The jobs are out there, I just need my applications to hit the right spot.

I had a fairly depressing realisation recently. A friend asked if I was enjoying my current short contract role - helping to coordinate marketing activity for this, which allows me to say I'm still part of the CULTURAL ELITE.

I said that I was loving it - the work is all about proofreading, copywriting/editing, brand management and partner coordination, which are all my favourite things to do (with a side order of BEING AN ARSE ABOUT GRAMMAR). But, I said, the main thing I like about it is that the people I'm working with are genuinely appreciative of and grateful for everything I do.

As soon as I said it, I thought: when you think I was in my last job for nine years, don't you think that's just a little bit sad?

Monday, 10 April 2017

and the results are in

Today I went for a second walking test as part of my Fampyra / Fampridine trial. As I mentioned before, I'd already noticed enough of an improvement to have decided that I was going to stick with it for a little longer. Coupled with physio and exercise it certainly couldn't do me any harm, even if the results hadn't been quite as miraculous as I might have hoped (cards on the table: I really hoped it would be miraculous, even if I'd [unconvincingly] told myself that it wouldn't be a big deal either way).

So earlier on I went to the same clinic I visited exactly four weeks ago and did the same two-part test. The nurse hadn't shown me my times and she hadn't looked before I started walking today.

Now I admit I was really pushing myself to walk as quickly as I possibly could. But when I saw the results they were pretty mind blowing. The nurse was fairly gob-smacked too.
the scores on the doors
Trial One (aka "There") had changed from 13.6 seconds to 5.9 seconds.
Trial Two (aka "... and Back") had changed from 15.5 seconds to 6.4 seconds.

That's an increase in speed (using my dim and distant GCSE Maths) of 57% in both cases. And that's after only taking the tablets for two and a half weeks.

I'd been trying to play down my expectations but seeing it written it down in black and white, when my walking has been a long-standing issue for me, was really emotional.

The Nurse will now fill out a prescription for 6 months and we'll see how it goes.

The only downside of these pills is an obvious increase in over-confidence.

For example: I needed to speak to a different MS team to get some more forms for my Tecfidera blood tests. When I went down the corridor without using either of my walking sticks the Fampyra nurse was HORRIFIED.

It would've served me right if I'd planted my face right there in the corridor.

Thursday, 6 April 2017

my (first?) 14 days with fampyra

Not Fampyra / Fampridine. This is Vampyra in one of my favourite films, Plan 9 From Outer Space
Day 1
Maybe I’m concentrating more on sensations and the quality of my walking, maybe it's the wonder of the placebo affect, or just the feel-good sensation of doing something, but I feel more stable already. More control over my feet, toes more responsive after my usual vigorous after-shower massage.

Day 2
A little thing but I'm able to move the toes on my left foot without feeling as if I'm mentally and physically doing some heavy lifting.
Balance still shot but lugging myself around is definitely improved. Increased sensation in my fingers. Downsides? Feel a bit constipated and bloated.

Day 4
We had a late night yesterday, which coincides with the clocks going forward an hour later on tonight. As the doses of Fampyra need to be taken at 12 hour intervals, this is troubling me. I’ve decided to do a "hard reset" in the morning - this is when my stomach is at its emptiest. Who knows?
Have been wobbling like a newborn foal - it's like I'm learning to walk again AGAIN (again?). 
Went swimming today with my Dad who noticed improvements already.

Day 5
The slump. I've been trying to keep my perceived improvements under my hat but it turns out everyone has noticed already. I feel like a watched pot or a tiny animal in the garden which no-one wants to scare off. 
Last night we mad a meal from the OMS Cookbook, which was a complete and utter faff and was REVOLTING. Had a bad night's sleep plus we lost an extra hour. So I felt as bad as normal. Patience at all time low. Plus still feel sick after gross meal. 
The day was saved when we ordered pizza - mine was Vegan and delicious. Plus I shared our cooking failure with an OMS Facebook group and they all related their own disastrous meals with me.
Tomorrow is another day.

Day 6
Had a great night's sleep - still getting supportive messages on Facebook (it's good to know that most people feel the same about Flaxseed oil!). 
Not so much positive action with regards to my walking at this point. Is it stabilising?

Day 7
Went swimming - the absolute highpoint of my day was when I drove out of my parking space and a woman driver pulled up really close behind me. When the lights in front of me changed and I had to stop, I saw her completely lose her shit in the rear-view mirror. This is usually what I do. She looked totally ridiculous. Then, because she was on her phone (!), she didn't realise that the lights had changed. While I was waiting at the next set of lights I could see that she hadn't moved and had missed her chance to drive on.

Day 8
Unexpected Daddy/daughter day. She says she's ill, I'm not convinced. I recognise the tactics from my 10th (?) birthday when I pretended to be ill so I could come back home and listen to my new Howard Jones LP.

Day 10
The effects of Fampyra are getting less impressive by the day - over analysis on my part? Should there be a cumulative effect? Feel bereft of something I never had. The disappointment on the faces of family members is precisely why I didn't want anyone to notice.

Day 11
We attended a music festival in Derby City Centre. Access to most of the venues was shocking and we ended up using the dreaded wheelchair for part of the day. But we had a good time.
Low point was my Vegan pub meal - it was the first time I've felt punished for my life-style choice, just a load of vegetables in some anonymous stock - even I know to use cornflour to thicken sauces, people!

Day 12
Felt tired and beaten after yesterday and full of self-pity. Pep talk from my Dad which made me realise that although Fampyra on its own might not be a miracle-worker, if I can take these improvements in control with me to any Physio which I will be doing (alongside continued swimming), it won't do me any harm.
---
It was at this point that I decided to contact the MS Nurse to arrange a continuation of this treatment. So on Monday, I go to see her to find out if my walking speed really has improved as much as it seems.

Regardless, the change in my ability to control my feet has been really quite something. As I said, it's not (in my case) been a miracle cure - it has (to my mind) increased the speed of my walking, but not necessarily the quality of it - there's still work to do to prevent scuffing, dragging my feet, etc. So now I'm chasing a referral for another round of Physio and an appointment with Orthotics.

Friday, 31 March 2017

belly laugh chortle

This is the sender's address which was attached to my recent delivery of *ahem* toilet supplies.

Even though this is not how I feel about it at all (well, not all the time, anyway) I thought it was darkly amusing that this - the initials of the medical company which supplies them - translates to a particularly salty bit of internet shorthand.

At the time of writing I've had just over a week of Fampyra and to be honest, it has been a mixed bag. I'm keeping a diary (certainly for the all-important initial fortnight) which I'll likely publish here in some EDITED form or other.

Wednesday, 22 March 2017

another shot at the moon

I think if I have a seizure, I'll definitely consider stopping taking these pills...
So here we are, then.

I received my delivery of a 4-week trial of Fampyra / Fampridine yesterday and this morning I took my first dose. Tablets have to be taken 12 hours apart and on an empty stomach.

Think about it - how often in the Decadent West, as a privelleged (sort-of) middle-class white guy, am I ever likely to have a truly empty stomach? But OK - I'll play along.

There's quite a bit riding on this - long-time visitors to this blog will know that my issues with walking are very definitely A THING. So if this can help me get my legs working a bit better, then eventually I might be able to exercise more and maybe build up some strength in order to forego this particular medical intervention. Who knows?

All I know is, something has got to start working soon. In the last 6-7 months I've changed my diet, left my job, started swimming more regularly, embraced mindful meditation. I've even started doing intermittent self-catheterisation, for goodness' sake!

I feel mentally clearer and stronger, at least - particularly since leaving my old job. I've started some freelance consultancy work, as well as doing some more (PAID) writing at MS.net. And the old pipe up the pee-pee is really freeing me up socially (it's still a bit weird, however).

Including Fampyra, I will be taking varying doses of eight different medications and supplements every day. And my mobility isn't getting any better.

Don't get me wrong, I'm not saying anything whingy and dramatic about this being a last throw of the dice or anything. I know how lucky I am to even have access to the drugs I am taking. Plus I am surrounded by people who want the very best for me.

Doesn't stop me wishing things were better though, does it?

According to everything I've read, people who respond to Fampyra know if it's working for them within 2 weeks.

At the very least, since taking my first dose I've been paying more attention to my mobility and posture - I'm not daft enough to be looking for any signs of improvement yet (although 14 DAYS). I just know that paying attention to the way I move around is something I really need to do more of.


But by the time I get through this very blister-pack of tablets, I'll know if it's working for me or not. Knowing that much is a good thing at least.

Thursday, 9 March 2017

i can change?

lifted from Dead Rob & His Dead Dog
It has long been a bone of my wife's contention that I seem to be much more rational, level-headed and stoical in my writing on here - and even more so on MS.net - than I am in real life. It won't come as a surprise to anyone who knows me that I can be a grumpy so and so. 

However, the other day was my annual(ish) MS MOT at the QMC. Aside from a general chat, the only thing I really wanted was to finally start the ball rolling with regards to the walking drug Fampyra which I've mentioned previously. Before starting the initial month's trial you need to have your walking speed assessed so I spoke to the MS nurses a couple of weeks ago to arrange to do this at my annual meeting - a full-service and new set of tyres to go with my MOT, if you will.

My main issue currently is to do with my walking - even with two sticks it's shocking. Apparently if Fampyra is going to work for you (which it does in a third of cases) it is obvious within two weeks of your free month's trial. Which is good, because after that you have to start paying for it.

Anyway, long story short, it wasn't possible to do this on the day which was mildly annoying. Previously, I would've really lost my rag about this kind of thing - like I said, this is the main thing which I'm struggling with at present, so we were all counting on it at least starting.

But today I decided to focus on the positives. Tecfidera is only messing with my bloods in a way which is medically 'tolerated'. More than this, my MS is stable - no new symptoms or significant progression at all. The neurologist noticed weakness in my left leg, so he is referring me for some more physio.

I saw the nurse who had previously said that I could bundle the Fampyra trial with my appointment. She apologised but has now started the ball rolling so I should be able to hopefully have my initial meeting for fampyra in a week or so.

This particular nurse also happened to be in the room when I'd been given the news that I needed to start doing intermittent self-catheterisation at the end of last year so she asked how that was going. I said that although it was undoubtedly a weird thing to find yourself doing, it's amazing how quickly you can adapt. She asked if I would be willing to talk to any other patients who might be struggling with having to start doing this themselves - in my current situation I obviously asked if there was any money in it. But it struck me that I'd be really happy to talk to someone about it, if it might be of help. At least, I don't think a demo is required…

All of this is way more positive than I would be traditionally (cf. blog title). So I don't have to be a miserable sod all the time.

This reminded me of a conversation I'd had at the weekend which illustrated that sometimes change isn't possible. My brother and I were reminiscing about how our cynical, know-it-all, anti-social music-snob personas were hard-wired over several hot summers. We suffered (and god alone knows how we suffered in the way that only adolescents can) with hay fever. So we would hole ourselves up in the dining room, which as well as having only north facing windows, also housed the family stereo. We would camp out in there, listening to and dissecting records (whilst sneezing) all summer long. It was great, but probably not great for our social skills. I know that it's not great to judge someone you've just met purely on the basis of their taste in music but it's still to this day incredibly hard to shake off.

I'm pleased that I'm a relative rarity amongst my male friends in that the music collection in our house is fully integrated. It helps that Mrs. D has what I consider to be good taste - but I think it's healthy to have (for example) Take That nestling up to Talking Heads. I think one of my friends makes his wife keep her CDs on a whole separate floor of their house! I'm not that bad.

However, if I come round your house and your music collection consists of a small rack of compilation CDs then I don't think we'll have much in common - sorry. I know it's wrong and I am trying to change but… baby-steps, y'know?

* FULL DISCLOSURE:  
This is all well and good but last night I totally lost my shit about some gravy which I had spilt. The struggle continues...