Friday, 23 June 2017

the devil will find work for idle hands to do

Final day of steroids today - taking them has got a little easier, especially since I stopped trying to take more than one at once. No real side-effects - aside from mega dry-mouth, an inability to drink a cup of tea or coffee while they're still warm (because gross), and the inevitable difficulty falling asleep.

On the first day, I managed the grand total of one hour. Last night I set myself up for the long haul with a couple of podcasts, got all comfy - and promptly fell asleep (don't worry, I eventually woke up stupid early so no harm done).

This particular relapse has really affected our whole family - in a way I've been the lucky one, only having to concern myself with getting some rest. It turns out that Mrs. D is - unbeknownst to me - unable to to sleep before I come to bed. We're sleeping in separate beds while I'm getting the 'roids out of my system, but she can't relax until I'm set up in bed. It's understandable, considering the nocturnal nonsense that we were dealing with at the weekend.

My parents and in-laws are just short of holding an intervention with regards to my pesco-vegan OMS diet. Their concerns are two-fold:
  • I'm apparently losing a lot of weight (I've not noticed it myself and my weight has always fluctuated - I personally think I could stand to lose a bit)
  • It's too much strain on Mrs. D - especially when I'm having a relapse. I'm not much of a chef so all I'm doing is giving her something else to stress about.
I'm going to give it some thought - it is a pain in the arse and I'm not even doing it completely strictly. There are all kinds of wacky rulings about the kinds of oils you're meant to use, permitted fat content and types, plus there are potentially three different meals which need to be made each day - carnivore for The Child, vegetarian for Mrs D, and annoying fuss-pot for me. Plus pre-prepared vegan food is stupidly expensive and the labelling for "Free From" items is so totally non-standardised as to make you scream.

But I am conflicted - I feel mentally clearer since I went down this path (no matter how half-arsedly I've been doing it) and this particular relapse has felt different to my previous attacks. I know the Neurologist kind-of fudged the question of whether he wanted to call this a relapse or not, but if it IS a relapse, it is progressing at a more leisurely pace than those in the past.

Now there are a number of factors which have changed since 2012 -
  1. I've changed medication to Tecfidera 
  2. I no longer have the stress of being at work (and the relapse-related guilt that I should be trying to work from home and/or getting back to work as quickly as possible), although I do have the stress of looking for work, applying for benefits, etc. etc.
  3. On top of all that I've been trying to adopt the OMS lifestyle - not just the diet, but more regular exercise, daily meditation, and Omega 3 and Vitamin D3 supplements.
Who's to say what has made the difference? It could be any, all, or none of the above. Yet again, life with MS is nothing if not a crap shoot. You pays your money, you crosses your fingers, you takes your chances.

Wednesday, 21 June 2017

strange victory, strange defeat

So it's a relapse.

Yesterday we went to the hospital - weirdly enough, I didn't actually see either the MS Nurse I spoke to the previous day or Dr Gram's Travelling Psychedelic Strawberry Charabanc (OK, Relapse Clinic - boring).

We ended up talking with the head honcho of the MS team in Nottingham - super fancy! I didn't go into it hoping for a relapse - no one in their right mind would go in wishing for that. But neither did I want to be fobbed off with, "Go home and sleep it off". This is what I got last time and it led to a really prolonged period of illness.

Even though as I was describing the situation I had an internal monologue saying that I was underselling it, he agreed it was a relapse. Or at least as far as he could tell. And even if it wasn't, a course of steroids would help to get me back on [some kind of / any kind of] track.

For convenience sake I went for the oral steroids which, if memory serves, I described as sucking balls last time 'round. On that occasion the dose was five 100mg Methylprednisolone tablets over five days.

This time I chose (on the Professor's advice) to take ten 100mg tablets per day over three days - which delivers the same dosage as three days of IV steroids.
And various members of my family were bothered by the amount of tablets I was taking before.

Earlier today I took my Omeprazole tablet [to line my stomach] followed by my first dose of steroids. And let me tell you, it wasn't pretty. I was genuinely concerned that I wouldn't be able to keep them down! I knew that they were going to taste gross but this was off-the-scale EVIL.

The only bright spot is the fact that I won't be taking them for a long period of time. So, just three days of retching and shitty taste as opposed to five.

I know there are worse things in life. And I really need to strap a pair on [again].

But still…

SO

GROSS

Monday, 19 June 2017

heatstroke or relapse?

AKA the world's crappiest coin toss

Despite containing my birthday (and I really did have a great birthday), the last week has been pretty shitty. A series of nights where sleep has been hard to come by has combined with the heat to severely affect my mobility. Even going across the road is a major operation.

I've also had some pretty bad falls (even falling out of bed - hello, nicely-developing bruise on my left hip) but Sunday night was the icing on the cake. Trying to get to the toilet, legs not working at all, collapsing hard into a dressing table, my wife struggling to get me upright. The one bright spark is that The Child amazingly slept through it all!

I called the MS Nurses first thing and have an appointment at a Relapse clinic tomorrow. It might be the heat but there has been a slow increase in disability recently, despite physio and everything I've been doing. It's been five years since my last relapse so I've sort of forgotten how things usually play out! However, I'm kind of hoping for some steroids to clear things up. I know it's not something to wish for lightly but it's getting a bit ridiculous.

When I eventually got back into bed last night I wrote (in my head) the angriest, most foul mouthed, most self-pitying blog post ever, so I'm thankful that good sense and a bad memory have prevailed - plus I didn't have my phone to hand.

BRIGHT SPOT: Me and the divine Mrs. D have a shared calendar on our phones, and the listing for my appointment tomorrow is for Dr Gran's Relapse Clinic, which sounded to her like some kind of travelling third division psychedelic band.

Wednesday, 7 June 2017

drugstore cowboy

So I've now become the kind of person who needs a pill organiser. After a few too many times when I've forgotten to take my Tecfidera (even though it comes in packets arranged by day of the week with AM-PM time-slots) and the very thought of forgetting to take Fampyra (because I'm paying for those), my wife bought me this snazzy little number.
I know I could take doses out of order but I like being able to see that I've taken my dose (or definitely missed it). The mental gymnastics required to think, "OK this capsule is from Tuesday PM which translates to Sunday AM", is simply too much to bear. PLUS Fampyra is packaged up two-by-two as doses need to be taken 12hours apart.

There are a lot of variations - join with me on a trip through my day!

Pre-breakfast:
- Fampyra dose one
- Mebeverine dose one (faecal urgency)
- Solifenacin (bladder urgency)

Post-breakfast:- Tecfidera dose one
- Vitamin D3 5000 iu x 2
- Flaxseed oil capsules 1000mg x 2*

Pre-lunch:- Mebeverine dose two

Pre-evening meal:
- Mebeverine dose three
- Fampyra dose two

Post-evening meal:
- Tecfidera dose two
- Baclofen 5g (nighttime leg spasms)
- Gabapentin 300g x 2 (neuropathic pain)
- Flaxseed oil capsules 1000mg x 2*

(* The Flaxseed Oil capsules are recommended as part of the OMS lifestyle diet. They are also proper horse-sized so they don't fit into my organiser)

I was sorting out my organiser when my brother paid me a visit recently. He was pretty horrified (I think his actual quote was something along the lines of, "How does one person take all those drugs and not die?"), although he was quite impressed with the tin Mrs. D bought to keep my stock in.
I laughed off his concerns at the time but viewed as a list on here, it does seem a bit much.

How many tablets /supplements are you taking?  And which if any do you think you could cut out?

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.