Thursday, 29 June 2017

steroids day 1: the drugs do (appear to be) work(ing)

thank you, friend
After a fairly dispiriting night (business as usual - totally immobile, unable to get out of bed without assistance, plus a couple of 'accidents' - nice), I woke up at my parents' house to find that not only could I still not get out of bed, but i was also unable to hold a drink or feed myself. My dad had to feed me breakfast and count all the bits of medication I would be taking, including my first day of this second round of steroids.

As I took the first one, I remember focusing all my strength on thinking "This WILL work".

I just chilled out in my room for about an hour (I say chilled out, I watched an episode of 24). And then I stood up and walked across to the bathroom.

As I type this (and the very idea of that would have been laughable yesterday), it sounds ridiculous. But I swear it happened like that, it was that rapid.

For the rest of the day, things continued to improve, I was able to look after myself without assistance and also do some regular physio exercises. Perhaps most surprisingly, after settling in bed with a few podcasts to listen to as the steroids put the kibosh on any idea of sleep, I nodded off within five minutes. I woke up earlier than normal but it was a good chunk of kip. And my legs and hands were still working when I got out of bed.

I'm not naturally the most positive of people (see blog title and ask my wife), but one thing I got from reading George Jelinek's Overcoming Multiple Sclerosis book was a section about the importance of Hope. Unfortunately I don't have the book with me otherwise I'd quote a bit of it but y'know those people that we've all seen at MS events who play Competitive Disability Bingo? Or people who talk down the achievements of people with MS who run marathons (Hi Swisslet) or climb mountains because they've ONLY got Relapsing Remitting MS, and anyway I've had it longer and you don't know how bad I've got it? I think they've given up hope.

And I think it has to be a conscious decision to abandon hope. I'm not saying this is going to help full-time wheelchair users rise up and win Ninja Warrior (or whatever) and it has to start with a good dose of Stoicism and an acceptance of what you're dealing with. But if the only thing you can hope for is that this is as good as it gets then that might be start.

I'm hoping that these steroids will help me get back to how I was before this relapse. And after that I hope to carry on getting a bit more control of my body and improve my fitness (I'm neither a marathon runner nor a mountain climber).

I had no idea that this blog post was going to end up so sappy when I started writing it, and I hope it doesn't come across as patronising or insulting to people who are dealing with worse situations than mine.

FULL DISCLOSURE: things were so bad yesterday morning that I was genuinely thinking of the best method to end it all. Sorry but it's true. My Dad displayed our family brand of gallows humour by saying that I wouldn't be able to hold a knife steady, and anyway I'm taking so many tablets that it wouldn't make a difference.

But I do think there must be something in the idea that having some kind of hope in medication and treatment - something with a basis which is tangible, scientific, provable - then it will be more likely to have a positive outcome. It's like when I was doing CBT all those years ago - a psychologist friend said that if people go into CBT expecting it not work for them, then it more than likely won't. I went expecting it to help and it did.

All I did yesterday was take a dose of steroids believing they would work. And they are.

When we spoke to the Neuro on Tuesday, we talked about the OMS diet and asked him his opinion. A vegetarian, he said that his advice would always be to eat a balanced diet. He would also like to view the evidence for any diet, as he had seen patients who had gone down this kind of route while also spurning drugs. "And they always end up back here eventually."

So although I'll take other parts of the lifestyle - meditation (270 days unbroken), Vitamin D and Flaxseed oil supplements, Hope - I'm going pescetarian from now on. Less of a mental strain for everyone involved. If we're out and the Vegan option looks good I'll probably choose that over anything else. And I genuinely love some of the things I've been eating while following the diet.

But at least I'm not a Reducetarian - for fcuk's sake, this is an actual thing and we're surely in the End Days.

Wednesday, 28 June 2017

mother of all relapses: the return

MS has to be one of the worst conditions to live with - for the person who doesn't have the condition, that is.

Of course it's unpredictable for us - but when we wake up, take stock and learn what we're dealing with that day, at least then we have one job: deal with it. My wife works, looks after our home, organises pretty much everything for our daughter, and she has to be a helpless onlooker to whatever situation I'm in that day.

I finished my course of steroids on Friday but the next two days were just weird. One day I felt like I was starting to get on top of things, the next I looked green and was more or less immobile.

Sleep was hard to come by, but Sunday was the worst. Overactive bladder meant I had to get out of bed at least 6 times in the night. Plus I also had the latest in an evolving series of trips and falls, going arse over tit into a rotating fan, which added to my ever-growing collection of lurid bruises. What larks. At least I didn't wake anyone up this time.

Monday I spent lounging around watching TV and just trying to get some rest. I also ate some food that I actually wanted and which didn't taste completely crap (only baked beans on toast but it hit the spot). So I was feeling pretty positive (if utterly banjaxed) when I turned in that night.

Unfortunately after a good chunk of sleep, I tried to get out of bed. I swung my legs over the side and then couldn't raise my upper body off the bed. After about 20 minutes of grunting and straining (yes, and swearing) I got myself onto the floor and could go no further.

We called my father-in-law who came over and was able to bear some of my weight in order to get me to the bathroom. Later I called the MS Nurses (again) and they asked me to come and see them (again). At that point they were talking about me being admitted for a full review.

When we got there, the neuro (following some physical tests and a conversation with the top prof we saw last week) decided that this was more likely to be a continuation of the relapse. Not necessarily evidence of progression (although more tests and a new MRI will be needed once I've hopefully got over this relapse).

As I responded well to them in the past, they've put me on a further course of steroids, spread over five days just like in Relapse 2012. Yeah, I know.
We also talked to the lead MS Nurse about the number of different drugs I'm taking. Talking about Fampyra, she said that a lot of people's experience with it shows a dramatic improvement followed by a levelling and eventual dropping off. Which certainly chimes with the Neuro who said that it's clearly not working currently and I should stop taking them, at least for a while.

To give Mrs. D a break, I'll be staying at my parents' house, at least while the disruption of another round of steroids runs its course. The stress of me being in the house was making her ill - so at least this way she should get more of a stress-free night's sleep.

My parents? Maybe less so.

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…



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!

- 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.