Monday, 4 December 2017

PIP denial 2: this time it’s personal

the DWP's new PIP assessor, yesterday
I feel like I need to start putting SPOILER ALERT on my Twitter feed. But last week I got an early Christmas present from the DWP.

Not really.

I actually got a letter from them saying that I've been refused PIP for the second time.

I should've seen it coming. The day before I felt the best I have done in ages. It was actually my last Therapy session but I felt like I'd turned a corner - still stuff to work on but I only had eight sessions. I'd already planned to have another eight sessions in the new year - I guess I'll need to book them in sooner than I planned.

As I said, this was the perfect end to a perfectly shitty year. A year of endless forms and pointless bureaucratic knock backs and double-speak which has prevented me from taking better care of myself and my family.

I've not had loads of time to fully digest their (il)logic but a cursory reading seems to imply that they're purposefully misreading my form and misrepresenting the content of my assessment (of which, as I mentioned previously, I certainly didn't make a recording).

I'm not on the scrounge, I just want what I'm entitled to, a replacement for my previous DLA award. This helped pay for the extra expenses - medication, prescriptions, petrol, parking, etc. etc. - which naturally arise because someone has a chronic health condition.

Being disabled is expensive.

We're going to chat with our local Unemployed Workers Centre contact. I'll also try to get the strength up to listen to the recording of my assessment (even though it doesn't exist) to double check if this is a simple misunderstanding or if it really is as personal and deliberately malicious as it feels at the moment.

Onwards!

Thursday, 23 November 2017

my experiences with OMS - YMMV

YMMV - written abbreviation for Your Mileage May Vary: used, for example on social media and in text messages and emails, to mean that you understand people may have a different opinion or experience to yours:
"Their first album is better, but of course YMMV."
During my relapse in summer I was advised to stop following the OMS diet by my MS team. Their argument was that there wasn't enough evidence to base relying on such a limiting diet in order to "overcome" Multiple Sclerosis. Truth be told, I was always a little uncomfortable with that word anyway - it's a chronic illness, you can learn to live with it, but the idea of "overcoming" it completely, while undeniably attractive, is a little misleading.

Since then I have been following a pescatarian diet - it feels pretty healthy and I was never all that fussed about meat (although I still get the sweats when I remember The Day of Two Burgers when we were in New York a few years back).

I remain a member of the OMS Facebook group (although as a silent observer).

Why? Probably because there's something undeniably attractive about the idea that a few relatively simple changes to your diet and lifestyle could have a positive impact on your health. And it's still cool to see how passionate and committed the members are.

But some aspects make me a little uncomfortable, like how group members with no medical qualifications can encourage other people to try things like - for example - a Fast Mimicking Diet.

Members are also quick to ascribe varying levels of health to things they've eaten. Forgive me if I'm wrong but isn't MS a fluctuating, progressive and entirely individual health condition? At the end of the day, members of that group - including a number of newly diagnosed people - are pretty vulnerable.

I remember the post in the group which linked to research which showed that following a plant based diet can dramatically lower your lymphocyte count. I asked how the OMS diet can be recommended for people who are on a Disease Modifying Therapy that already lowers lymphocyte count (which is closely monitored by ms nurses), regardless of diet. The founder of the lifestyle, George Jelinek himself, came on to the thread and effectively told me to carry on regardless (I'd already stopped by that point).

Recently George Jelinek shared an article from the OMS website with this eminently clickable title: Disease-modifying drugs are not effective for the average person with MS aged 53 or more.

One Facebook group member pointed out the selectivity of the headline, calling it sensationalist when the authors of the paper themselves highlighted the limitations of the meta data they'd used. However, this and other linked articles continue to gain traction.

Now I'm not in any way saying that the originators of OMS have any sinister agenda. Neither was the lifestyle responsible for my two relapses this summer - considering all the stress we've been under for the past year or so, this was very much IN THE POST. Plus there are still a lot of aspects of the OMS program which I firmly believe in - one being the importance of daily meditation, another being the need to take advice on medication options.

But I think one of the most enduring aspects of OMS for me is the importance of maintaining Hope (which to my mind has a similar chemical compound to Stoicism and Positive Thinking).

When I started following the OMS lifestyle, I genuinely felt better in myself - thoughts were clearer, and physically I felt less sluggish. Was that simply hope, coupled with the positivity of trying to do SOMETHING? Who knows.

This last year, I have had a lot of that positivity (which was always in pretty short supply) knocked out of me by one thing and another. And one of the key elements I think that OMS provides (which is probably the same for exercise, DMTs, yogic flying, etc.) is the sense that you're taking control of your health and future in some way. This can only be a good thing.

But once I lost faith in OMS, it stopped working for me. It's like my friend told me when I started Cognitive Behavioral Therapy - it's a good form of therapy if you're prepared to go along with it. If you go into it with cynicism, it's probably not for you.

With starting on Tysabri, I'm investing a lot of hope in a new medical intervention. And although it's too early to say if it's working or not, I'm doing something based on the best advice available - I'm not feeling any worse on it, for a start, plus I won't forget to take my tablets or do my injections.

Like I said above, the people in that group are if not vulnerable then at the very least open to suggestion - and they certainly invest a lot of weight in any pronouncements made by Professor Jelinek.

I've been brewing these thoughts for a while, and that FB post tipped me over into actually trying to gather everything together.

There ARE worse things you can do for your health than eating better. And I still think that doing ANYTHING to get control of your health is by its very nature a positive thing - psychologically at least.

I do not judge people for their decisions. We're all grazing at the all-you-can-eat salad bar of MS interventions and there certainly don't seem to be any answers which are worse than others. As long as there is some evidence to back it up.

I know that the importance of diet and its influence on gut health seems to be an element which is under closer and closer scrutiny as MS research advances. It would be so sweet to make a few changes to lifestyle and know that it was going to have a positive effect on our disease pathway. Who knows, this might even turn out to be the ideal way to stop MS in its tracks.

But although, not malicious, some things published online - not just on Facebook - can be, at the very least, irresponsible. By way of an example slightly closer to home, no one in my clinical MS team has heard anything about that seemingly-legit piece of research about plant-based diets and white blood cell counts. As always…

Let's be careful out there!



Wednesday, 15 November 2017

a brief word from our sponsor

Little Miss D came home from school with a poster she had created. I have it on my desk where I try to write, apply for jobs, listen to music, basically just carrying on.

At her school they have characters called Work-At-It Whizz and Really-Hard Ratty - I think this poster was part of the school's motivational ethos.

Under a picture she drew of a Beatle (probably Paul as he's her favourite - see below), it reads as follows:
Do not give up!
Work hard!
Some people give up
Never ever give up!
Do not think about giving up!
Think positive!
Please don't give up!
I think about not giving up
Think about not giving up!
No, do not give up!

Don't give up!
Never give up!
Yes, it's repetitive but I find it brutally convincing. I try to learn a lot from this sensitive and supportive little soul.

Wednesday, 8 November 2017

a one way ticket back to the life he once knew

the only Pips I want to hear about now
Last week I had my second PIP assessment. As before they tried to throw me off my guard by sending out an actual human being (or something very close to it) to do this assessment. I know, there's no end to the sneaky tricks they'll play.

Same as last time this involved going through my form, going over my answers and my history with MS.

However with my second application, rather than basing it on my previous successful applications for Disability Living Allowance, I had been able to include a few things which had come into focus over the summer. Namely, the non-stop party that was and continues to be...
  • Adaptations round the house
  • Intermittent self catheterisation
  • Change in medication due to having two relapses on the bounce
  • My experiences of physiotherapy
  • The fact that I am seeing a therapist for anxiety and low mood
Previously we’d been guilty of the old British stiff-upper-lip - not wanting to complain or be any bother. So this time we didn’t undersell things - and anyway, there was more disease activity to go over (particularly worsening mobility), more issues and more symptoms.

Having to talk about my low state of mind was particularly difficult because the person who was in the room alongside me was my dad. He knew that I’d been suffering with my moods anyway, as he’d been with me during my relapse. What was news to him, however, was the fact that I was continuing to have some unhealthy thoughts despite the positive steps I’d taken in therapy.

Anyway, the assessor "seemed" to understand the affect that MS was having on our everyday lives, as well as the difficulty of going over this material all over again.

(Apologies if my tone comes across as overly cynical - one bitten and all that)

I was grateful that the timescale wasn’t quite so drawn out the second time around - three weeks from submission to assessment, rather than the best part of seven months.

I’m also particularly grateful that - whatever the result - this should be the last hurdle I’ll be forced to go through this year. Let’s look at 2017 in a year of crappy headlines!
  • December 2016 - leave work, fill out my first PIP form
  • January - submit PIP form, apply for Job Seekers Allowance
  • February 2017 - get off JSA, apply for Employment Support Allowance
  • March to June - lovely bit of freelance work
  • June - relapse central
  • July - PIP assessment #1
  • August - turned down for PIP
  • September - began Tysabri and started to fill out my second PIP application
  • October - applied for PIP again
  • November - PIP assessment #2
And that doesn’t include Physiotherapy, Therapy, job applications, job interviews, numerous benefit applications, and so on and so on.

So now we wait for the outcome. I will probably write something more n the future about the wider implications of PIP as both a system and a process. But at the moment I'm just glad that this year is almost over.

And that I can do no more with regards to PIP - whatever the result, I'm just glad that I certainly didn't make an audio recording of the assessment. Not that I would be rushing to listen to it again (if I had made a recording, which I certainly DID NOT).

But just in case...

Monday, 23 October 2017

the locus of control

My current round of physiotherapy is (I think) my fourth stint. Each time I've been signed off previously, I've been full of good intentions. And I've always ended up back there when my walking has worsened, doing the same (or similar) exercises all over again.

So, as I went to my penultimate session at Neurology Outpatient Therapy Services last week, I was feeling all kinds of separation anxiety.

I ended up talking about this with my Physio, who, because some people aren't quite so keen on sharing every aspect of their life online (weird, I know), I'll call H.R. I'd been feeling pretty low - I'd been ill and although I'd been maintaining my exercises I felt that my walking had gone down the pan.

She listened to my bellyaching and started talking about the Locus of Control:
A person with an internal locus of control believes that he or she can influence events and their outcomes, while someone with an external locus of control blames outside forces for everything. This concept was brought to light in the 1950's by Julian Rotter.
from the Encyclopedia of Psychology
She said that her role as a physio was simply to give me the tools to keep well. It's like when you pass your driving test, you don't need a driving instructor with you all the time, you just need to keep driving. All the progress I'd made over the last months was down to me - it wasn't down to her, I had done all the heavy lifting.

And I guess it's true - although it feels like we've been in the trenches together, in actual fact I've seen her no more than 10 times (my relapse meant there was a hell of a gap in the middle).

After we had talked, I did some exercises and she watched me walking. And she said that I was moving better than I had been at any point since I'd started seeing her.

So this week I have my last session with H.R. And it feels precarious. So I need to remember that I'm the only one who has the ultimate influence on my ability to be well.

This has been the most traumatic summer of my life. And due to how amazingly supportive she has been, our physiotherapy sessions have at times been heavy on the Therapy, light on the Physio.

[interestingly my therapy session this week was more like Careers Advice, but that's another story]

So I have a job to carry on.

But I'm sorry, H.R.

Regardless of what you say, you are an absolute rock star. Thank you.

Much love,


A Grateful Patient

PS I'll always try keep your inspiring words close to my heart:

Shoulders back
Squeeze the tummy muscles
Lift your bottom

Monday, 9 October 2017

well, well, well, you're feeling fine

I am BLOODY LOVING therapy at the moment.

To be honest, last week's session really came along at just the right time. I'd been trapped in a cycle of bad and unhelpful thoughts. And a couple of nights before I'd written the following as a note on my phone. It kind of represents what was going on in my head. It's repeated here, almost exactly as it spewed out:
Applying for jobs
Applying for benefits
Applying for PIP
Worrying about money
Makes health worse
Difficult to prioritise
All are priorities!
Head spinning
Getting one thing out of the way,
Another priority sneaks up

As soon as you think one thing (e.g. Housing Benefit) is sorted, something else (e.g. PIP) rears up. But doing all this stops me engaging with the ESA [i.e. the opportunities that are open to me through my Employment Support Allowance], giving job applications my full attention, doing house work, finding time to do physio and engaging fully with therapy.… which makes me feel worse
So that's where I was at. The bit in the square brackets is the only thing I've added.

Anyway, I gave that lot to my therapist at the start of our session. We talked a lot about how I respond to worries - they tend to be around the big bits (PIP, Housing Benefit, money in general), but I usually just crack on with those when they pop up. However, I DO tend to go at each thing full-pelt, not really prioritising things very well - which is why me head sounds like THAT.

As I've mentioned before, I only tend to lose my shit about little bits and bobs - trying to get The Child ready for school, where my wallet is, etc. She saw this as something to do with my "Intolerance of uncertainty" and need for control.

Next time we'll be talking about a more balanced approach to prioritising - bring that shit on.

I also talked about the fact that frequently, whenever I lose it about any tiny little thing, I have a simultaneous Director's Commentary in my head, saying things like, "wow, that's totally unreasonable of you... yep, you look like a total dick now".

It happened twice that day, once in a heated discussion with Mrs D (she's a very lucky lady, I think we can all agree) and then when I was driving to therapy.

Everyone has that kind of thing in their head, right?

Friday, 29 September 2017

so how was your morning?

Here we go!
take a moment to imagine the hairs coming out when the tape was removed
I started writing this earlier when my first Tysabri infusion was underway.

One of the top tips for having a good infusion is to have a good night's sleep. Which obviously was not forthcoming last night.

The journey into hospital was a bit of a handful (a bloody Hardy-esque pathetic fallacy was in full effect once more). Before getting started I found out that my Lymphocyte count was down again, disappointingly - I'd have thought that this should have been sorting itself by now, seeing as I've been off Tecfidera and my wacky Vegan-ish diet for a few weeks now.

After a quick unburdening-of-woes with a lovely MS Nurse, I was hooked up and we were off - following a truly bizarre pit-stop when a different nurse took my blood pressure, my pulse and stuck a thermometer in my ear, all at once.

One lady (clearly a lifer) who was having the same treatment told me what to expect - metallic taste (a la steroids), a dry mouth, tiredness, and feeling headachy with those pesky flu-like symptoms beloved of all MSers everywhere. D'you think there'll ever be a future MS treatment which doesn't list this as a common side effect??

[Post-infusion update: no dodgy taste (although I was pretty much eating non-stop), feel slightly achy and a bit rinsed out. Otherwise, all good and I still feel fine now.]

Here's what I ended up listening to while having my infusion (minus the first course which was last night's episode of The Archers - the only soap opera which I have any time for):

Evinha — Que Bandeira
Nina Nastasia — This Familiar Way
Ween — It's Gonna Be (Alright)
Tom Waits — Falling Down (live)
Grizzly Bear — Wasted Acres
Lambchop — NIV
The Walkmen — My Old Man
The Burning Hell — Industrialists
Lambchop — Harbor Country
Jonathan Richman And The Modern Lovers — My Love Is a Flower (Just Beginning to Bloom)
The Cramps — Human Fly
Animal Collective — Banshee Beat
Jonathan Richman And The Modern Lovers — Abdul And Cleopatra
Ween — The Blarney Stone
Rolling Blackouts Coastal Fever — Wither With You
Nina Nastasia — Lee (Daytrotter Session)
Richard Dawson — Masseuse
Jonathan Richman — Stop This Car
Silver Jews — Pet Politics
Silver Jews — Black and Brown Blues
Silver Jews — Ballad of Reverend War Character

Friday, 22 September 2017

i wanna be back in your life


Too long between updates! Let's get this started.  

1
We sent a request for the DWP to reconsider my application for PIP. And obviously they ignored all the points we raised, kept my score exactly the same and turned me down.

We met with our Unemployed Workers contact and talked about taking this to a tribunal but, like I said previously, all the things that have happened since January (when I first applied) won't count. So I'm going to make a fresh application which includes everything. Which will be fun.  

2
I got a note from the MS Nurses which says that my recent MRI showed significant increase of lesions. Honestly, the horrible stuff which comes through our door - I feel like our letterbox needs a quarantine section. Even better, this particular letter had the wrong address on the envelope so it ended up with some neighbours. Which wouldn't be the end of the world if their letterbox hadn't ripped the envelope open. Awkward.

I've been DMT-less for a couple of weeks as I get Tecfidera out of my system ahead of my first Tysabri infusion next Friday. The first appointment is a bit longer as I need the be "consented" - the kind of phrase which just makes you feel all warm inside, right? Yeesh.

Unhelpful bellyaching aside, it will be good to get started. Fingers crossed.

3
Physio is going really well, my swimming is coming on, and CBT therapy is so helpful. Why people aren't recommended to start this on diagnosis (for any chronic illness, not just MS) I have no idea. Having said that…

I had a job interview the other week, my first for a LONG time. The people who interviewed me said that it was really close between me and two other candidates. Which isn't as comforting as they think, but at least I wasn't miles away.

But I was unsuccessful and - to be frank - I totally lost my shit when I found out.

After a couple of really unhelpful rants (apologies and a tip of the hat to Mrs D and Jackie Z) a couple of things turned me 'round.

Firstly, Mrs D pointed out that a couple of months earlier I wouldn't have been able to get it together to put in an application, let alone one which got me an interview. I also wouldn't have been able to prepare a presentation, get myself suited and booted, or do a good interview.

(I must say that, without the ongoing support of Mrs D, there's no way I'd have got anywhere near the interview. I'm a lucky chap.)

Secondly, Little Miss D came back from school the same day with a certificate for being Pupil of the Week. What a legend.

Wednesday, 13 September 2017

put that thing away

Over the past couple of weeks I've been swimming a couple of times - for the first time since long before my relapse started in mid-June. Although I haven't managed to do as many lengths as I had been doing previously, it has been a good start.

Because I was a wee bit nervous my Dad came along on the first occasion. We went to the pool which is just down the road from our house, not the one we go to with Little Ms D which has unisex changing rooms.

The one which is closest to me very much DOES NOT. Why does this matter? Well.

By way of illustration, when we arrived last week we were greeted with the following sight.

A fully naked old man, with his back to us, bending over to dry his lower legs, balls SWINGING LOW, his third eye practically winking at us.

The level of nudity is something I've noticed previously at this particular swimming pool and it doesn't get any less weird, no matter how often I return.

Illustration based on the author's sworn testimony by my brother
I'm no prude but I can't see that I will ever be the sort of person who is that... I dunno. Blasé? Regardless of who you are, the male form is a ridiculous thing, all swinging danglers and proud salutations.

Even after I'd warned him, my Dad was silently mouthing, "What's going on?!" And that was before we walked further into the changing room to see a (clothed) man talking to a completely stark bollock naked man.

A couple of days afterwards I mentioned the fact that I'd been swimming to my community physio. After having a laugh about the old lads and their OLD LADS, I mumbled something apologetic about the low number of lengths I managed. She pointed out that a few weeks previously I'd been pretty much immobile. So I should maybe go a little bit easier on myself.

Tuesday, 22 August 2017

learn from my PIP mistakes!

AKA Everybody Has Been Burned Before 

Although it has been a while since I published anything I've got loads of fragments on my phone, bits of wrting for here and / or multiplesclerosis.net. Blogs about sleep and the lack thereof. The soothing sounds of BBC Radio 4 when all you have to do is sit around and try to slowly get better. But then real life gets in the way and the moment is gone.

To be honest it has been a bit of an emotional rollercoaster (to put it mildly) and some of what I've written seemed a bit facetious in retrospect. But no harm no foul.

In brief:
  1. I've had a few visits from a community Occupational Therapist and it has been brilliant to get a bit of movement going. This relapse and my recovery has been a harder slog than previously but every day in every way, yaddah- yaddah-yaddah.
  2. I've started therapy, which has been great. The hardest thing about this relapse has been the way it has affected the family (Mrs D, in particular) so to have a space where I can just sound off without having to filter my thoughts or worry about how the other person will take it is immensely freeing.
  3. I got the results from my JC Virus blood test and it came back negative, so I'll soon be stopping taking Tecfidera. After a period of "flushing out" the last doses, I'll be straight onto Tysabri - as long as my MRI doesn't come back with any surprises, I guess. The MRI itself was uneventful enough, although it was as much of a hardcore perspective-provider as my last one. When I came out this time my mum was talking to lady who I assumed was pregnant and was waiting for a loved one. It turned out that she was having an MRI to see if the huge tumour in what was left of her bowel (she'd already had half removed) was operable or not. Like a great man once said, too much fcuking perspective.
So that's it. Apart from...

Despite having been on Disability Living Allowance for the best part of a decade due to having a CHRONIC DISABLING HEALTH CONDITION, plus the fact that I was knee-deep in relapse when I was assessed, my application for PIP was turned down.

We found this out at the end of July and we're now over our first reaction (which was basically apoplectic rage leading to depression).

Here are a few things we've learnt:
  • The assessment is only based on the information you include on your form. So in our case all the stuff which has come on since then - relapse, adaptations around the house, physio and CBT therapy, worsening mobility - can't be included retrospectively (FYI my application was submitted in January, the assessment was in July). And if I'd got in touch to let them know about the developments, the DWP would probably have asked me to submit a new claim. So the system is broken at best, at worst very much rigged against disabled people - especially people with an unpredictable disease pathway.
  • We've been talking to a family friend who works at our local Unemployed Workers Centre - see https://www.tuc.org.uk/sites/default/files/UWCDirectory.pdf to find your nearest option (or contact Citizens Advice, MS Society, MS Nurses, anyone!). Ours has a lot of experience in overturning PIP decisions on appeal but he said that, based on the form I submitted, there was no reason I should have been turned down. So we've formally requested they reconsider their decision based on a number of points in their assesment which were incorrectly scored. 
  • If this fails we'll consider taking it to an independent tribunal with advice from the UWC. Or I'll reapply, including all of the recent developments. 
A final word of caution based on our experiences. If you're at the start of your PIP application process, even if you've been receiving DLA for a number of years (as I had), get some help in filling out your form (see the list above as a starter).

Although he said that I should have been successful, our advisor could see that the way I'd worded some of my application might've been open to misinterpretation.

As it seems to have been.

Sunday, 30 July 2017

what is not but could be if

As far I'm concerned, every relapse seems to have its own soundtrack. My 2012 relapse coincided with Little Ms D's first birthday which was emotionally hard for me to take. Because of this, I probably should have avoided coming across the music of Sharon Van Etten, whose first three albums are devastatingly raw and emotional.

Her voice - simultaneously tremulous and defiant, powerful and wounded - got me through the worst of my 2012 relapse, even if at times listening to her albums was the kind of bad idea which you can't help carrying through.

The sharp-eyed amongst you will have noticed that the title of this post comes from yet another Silver Jews song, and they are the band that I've been reaching for most often this time 'round.

Their music is a kind-of shambling, lo-fi type of country - but the skewed romanticism in the lyrics, delivered by the ruined voice of David Berman, are what does it for me, described on their Genius page as offering "an alternative, sometimes inebriated take on the traditional country themes of lost women, whiskey, Nashville, and disillusionment".
Silver Jews
One of my most oft-quoted lyrics (just ask Mrs D) is:
When I go downtown
I always wear a corduroy suit
'Cause it's made of a hundred gutters
That the rain can run right through.
But a lonely man can't make a move
If he can't even bring himself to choose
Between a pair of black and a pair of brown shoes
- Black And Brown Blues
Last week I went back to the QMC for a blood test to see if I have the JC Virus (mentioned last time because of the effect it can have if you take Tysabri).

Is it weird that I'm impressed by the fact that my blood had to be sent off to Denmark to be tested? Super-fancy!

This visit gave me an opportunity to ask the lovely Kate (MS Nurse) a few more questions because it had all got a bit noisy in my head and after reading that MS Trust leaflet I didn't really fancy taking any of the suggested new drugs.

She pointed out that the risk of developing progressive multifocal leukoencephalopathy (PML - or as Mrs D likes to point out, "piss myself laughing") is only 1 in 100,000 if the test comes back negative. If it comes back positive it "only" goes up to 100 in 100,000. And regardless, the MS team monitor people closely and continuously if they go down that route.

She said that Tysabri woud be her recommendation as Alemtuzumab can lead to a higher risk of developing another autoimmune disease - I know that this can be a common issue with any autoimmune disease like MS but why add to the risk?

So even though I can usually find myself unable to choose between my options*, if my bloods come back OK I'll likely be going down the Tysabri route.

* just like like the narrator in the song quoted above - it's weird how things turn out, right?!

I have another MRI next week. Which will be the third week on the trot that I will have visited the QMC (and the fifth time in seven weeks!).

Wednesday, 19 July 2017

another round of DMT pick n mix

genuinely helpful diagram that the brilliant MS Nurse drew for us yesterday
Yesterday I went to see the team at the QMC for a follow-up from the recent MOAR (Mother Of All Relapses) and things have certainly changed in the realm of Disease Modifying Therapies.

Most noticeably there seems to be a "failure will not be tolerated" attitude to treatments. Which is why after my first relapse in 5 years (and first in the almost 2 years since I started taking Tecfidera), the Neurologist and MS Nurses are keen to discuss changing medication, and a step-up from First Line treatments to more aggressively effective Second Line options.

So we're now back in the realm of weighing up drugs (or, more likely, sticking a wet finger in the air to see which way the wind blows) - the key contenders are:

Finngolimod (aka Gilenya) - one pill a day but the promised reduction in relapse rate means there's not a huge amount to choose between this and Tecfidera - it's still classed as First Line, and - like I've said - the various teams would like to see a move to something a bit more effective.

Tysabri (aka Natalizumab) - an intravenous infusion once every four weeks. The MS Nurse described this as acting like velcro on the immune cells in the blood stream, preventing them from passing through blood vessel walls and into the central nervous system where nerve damage occurs.

As it says in the MS Trust publication on Disease Modifying Drugs (links opens as a PDF):
Tysabri is a highly effective (category 2.0) DMD; it reduces the number of relapses by about two thirds (70%).
Sounds great, yeah? But hang on...
Treatment with Tysabri may increase the risk of progressive multifocal leukoencephalopathy (PML), an uncommon brain infection that can lead to severe disability or even death. PML is caused by a mutation of the JC virus, a common infection completely unrelated to MS. 
So there's that...

And finally Alemtuzumab (aka Lemtrada aka Campath) - taken as two five-day intravenous infusions, 12 months apart. Again, this is a highly effective category 2 DMD, reducing the number of relapses by around 70%.

Because Alemtuzumab suppresses the immune system, people are more vulnerable to infections, and there's the usual headaches and nausea. But surely that's not all, right?
Three serious side effects have been reported from clinical trials:
  • overactive or underactive thyroid gland leading to thyroid disorders, affecting 360 in 1000 people
  • 
idiopathic thrombocytopenic purpura (ITP), a serious disorder which prevents blood from clotting, affecting 10 in 1000 people 
  • 
kidney problems, affecting 3 in 1000 people 
These side effects are potentially serious but they are treatable if caught early enough. People taking Lemtrada will be informed of the early signs and symptoms of these side effects. 

When I was talking to the MS Nurse, she implied that Alemtuzumab had more risks associated with it (certainly more than the MS Trust publication implies), mostly because of how intense it is, effectively wiping out lymphocytes - more reading will have to be done.

So this is where we are! Next week I'm going back to the QMC for a blood test to see if I have the JC Virus and am therefore more or less likely to develop PML.

On first glance, I was leaning more towards Tysabri but now I'm not so sure.

Thursday, 13 July 2017

suffering jukebox

I haven't had the energy to update since the recent flurry of activity. Even now, a week and a half after my last dose of steroids, I haven't been able to sleep through the night. It seems to be that I go straight to sleep, then an hour later I need to go to the bathroom. Then I sleep for another 3-4 hours before I need to get up again. It's very frustrating.

And this just in from our TMI desk - I'm worried that I might be in danger of developing a Urinary Tract Infection. As Fergie would have it, Glamorous.

Which is why I started writing this post this morning in the sun, drinking as much water as possible.

More positively, the adaptations we organised around the house were fitted a couple of days ago.
  • An extra banister on our stairs
  • Rails on a wall on the landing
  • Grab bars and a (non-permanent) seat in the shower, with a further grab bar by the toilet
  • Something under the mattress which gives me a metal bar to hold onto when I get in and out of the bed (it could also prevent me from falling out!)
  • A raised toilet seat
We also had an extra frame for the downstairs loo which we discovered too late doesn't allow us to close the door. So that's going to be swapped for another raised seat.

All of these things have made a tremendous difference - I was able to easily get around the whole house yesterday. Maybe that's why I'm so tired today? The old steroid side-effect of feeling too good and pushing yourself too far too soon?

The OT who came over last week is also arranging for me to have some physio at home, which will be good. She's also arranged with the Neurology Outpatients Therapy Services (where I normally go for physio) for an appointment with a Speech and Language Therapist - I've had a couple of instances where I've almost choked on food and drink, and this is apparently another potential problem with MS. It really is the gift that keeps on giving, isn't it?!

Mentally I feel I'm doing OK, despite being a bit snappy. But because my mobility is still a bit dodgy I've postponed my CBT until the week after next.

Next week I've got a neuro appointment when I'll give him some feedback about the two different steroid doses (5-days good, 3-days SO bad). And in a couple of weeks I have another MRI, and depending on the outcome we might be looking at trying different medication.

The worst-case scenario hanging over my head? A rebadging from Relapsing and Remitting MS to Secondary Progressive.

I know there's no point in worrying about the future, and this is how most people's MS progresses. But still.

-

Like another recent blog post, the title for this one came from a song by Silver Jews, a favourite band of mine. Enjoy.

Friday, 7 July 2017

what a week

On Tuesday of this week I finally returned home. The thought totally stressed me out in advance to be honest but since being home I've felt much better. I really missed being here, even though I was super comfy at my parents' house.

I'm slowly getting stronger by the day - I think stepping away from the incessant bloodletting of GoT is helping. But it has been pretty full-on since I've been back:
  • Wednesday we had a visit from a Community Occupational Therapist who asked us loads of questions, watched we move around the house and made loads of suggestions about adaptations. Our Landlord is a family friend so getting permission wasn't a massive issue but these will be fitted in the next week or so - mostly rails and grab bars in various places around the house.
  • Thursday we had a Disabled parking bay painted outside the house - we applied in October of last year and the actual job only took five minutes to do. This is huge for us (not that I'm driving anywhere at the moment).
  • Earlier today I had my PIP Assessment - it was so bizarre, going through that form again, talking about my medical history AGAIN. Truth be told, things have changed a lot since I submitted my application in January - my mobility is a lot worse than it was. Could I have done without the stress? Probably. Was this week the best of all times to display the issues I'm having? Very possibly. Now we wait between 4-6 weeks to hear back.
On PIP, I called CAPITA (the assessor) earlier this week to let them know that Mrs D was going to be in attendance and also to see making an audio about recording of the assessment (after reading this on the Citizens Advice Bureau website). They said it wouldn't be possible unless we were able to provide two identical CDs or Tapes on the day. I explained that I was hoping to be able to just record it on my phone for reference but was told that wouldn't be allowed because "people can have all kinds of sound editing software on their phones".

I said what if I record it as a sound file, press the stop button in front of the assessor and then email the file immediately without pressing anything else. Apparently this wouldn't be allowed either.

Isn't that nuts? Especially when most people's first thoughts will have been to record the audio on their phone.

PLUS they called an hour and a half before our scheduled appointment to say they'd had a "cancellation" and could they come round in 20 minutes. And I'm paranoid at the best of times.

Sunday, 2 July 2017

steroids days 4 & 5: lazy days

last steroid
I've been spending the last couple of days just relaxing - had a lovely day yesterday hanging out in the garden and watching films with Mrs and Little Ms D. We've continued the GoT binge-watch (up to Season 3 now!) - very watchable nonsense.

Bit of a crappy night's sleep last night so I've been zoning in and out for most of the day and actually had a nap this afternoon. Anyone who knows me will know that this never happens EVER.

Bit nervous about what tomorrow will bring without steroids. To be completely honest, of the two courses I've had to combat this relapse, the positive effects have been way more noticeable on the lower-dose, longer-course version.

I think the 1,000mg per day for three days is a bit of an 'experiment' the the Top Prof is keen on. I can see the sense - it delivers the same amount as you'd get through three days of IV bags but you don't have to keep coming into clinic. Personally, I think having to digest that many tablets did NOT agree with me. It's quite telling that the Prof admitted that every time he's sent a patient down to the pharmacy with his hardcore prescription, the chemist will always call him to double-check that it was actually correct. Hmmmm. We shall see.

I've been mostly keeping up with my physio exercises and reintroducing dairy into my diet with a vengeance. I'm still a member of the OMS Lifestyle Support Facebook group and earlier today one of the members posted the following video from NutritionFacts.org.

It's pretty interesting (much like GoT I let a lot of it wash it over me) but it points out that moving to a plant-based diet can drastically reduce your white blood cell count - which Tecfidera does anyway.

No more experiments!

Friday, 30 June 2017

steroids days 2 & 3: night-time stress, muted positivity and a PIP-related question

As previously stated, on Day 2 I woke up fine after a good chunk of sleep. Otherwise nothing much to report apart from I had a visit from Mrs and Little Ms D which was absolutely lovely. They were pleased with how well I was doing. Truth be told my legs didn't feel quite so switched on - nowhere near as bad as they were pre-steroids, but not quite as non-shuffling. Might just have been our perception? Or even just the flappy slippers I was wearing?

Sleep was hard to come by because STEROIDS but also because I had a few thoughts rattling my noggin (which I couldn't do a damn thing about at 4am):
  • My parents had to cancel a holiday to look after me this week - they only had to pay for flights but still. They rescheduled them to this coming Monday which is the day after I finish this round of steroids. When I finished last week's heavy-duty steroids that obviously led to a rapid two-day decline and immobility. So obviously I was freaking out about that. Until I spoke to them and they said that of course they weren't going (see 4am above)
  • My wife has had to take the last week off work due to stress (OBVIOUSLY) so I'm worried about her. Her mum and dad live really close (like, across the road) and I think it did her good to see me up and about yesterday. But still - I worry.
  • I have a PIP assessment (at home) next week today. Yes, this could be - ironically - the perfect time to have this visit and Mrs D will be in attendance too. But just how much stress can we take? Furthermore - and here's the question for YOU - how should we prepare?
I've already done a bit of light exercise today - just a walk around the garden as it's the first day that it hasn't been raining (I always hated Thomas Hardy's use of Pathetic Fallacy, so this has been particularly annoying). I'm keeping on with regular physio exercises as I arranged yesterday to have an open appointment until we have a better idea of what things will look like next week). The wider plan is to spend a bit less time being totally static (although my dad and I have come late to the party and are binge-watching Game of Thrones).

Here's some good news:
  • After nine months of applying, chasing, mis-communication and MORE chasing, earlier today Mrs D sent me pictures of markings for a disabled parking bay outside our house. The street we live on is busy (plus points: I learnt to be a Parallel Parking JEDI while I was wooing Mrs D) but is also the closest street to the City Centre which doesn't have a residents-only parking scheme. Leaving the house can be incredibly frustrating. People will do circuits in order to find a space and then park really, REALLY badly - one car (owned by someone who walks into town to work or shop) taking up a space which could easily house three is a regular thing. This is going to really help.
  • I've spent a bit of time on the phone to my GP about getting the Community Occupational Therapy team out to do an emergency assessment of our house and make some recommendations about possible adaptations - something which the MS Nurse spoke to us about on Tuesday. I've just got off the phone to them, they're coming out next week, which is great. Hopefully I'll be in a position to not need them soon but at least they'll be in place for the (wearyingly inevitable) next time.
  • As I mentioned in a comment to the last blog, I start therapy in a week or so which will be good for me.
As well as GOT (Grade-A NONSENSE but entertaining enough) I've been listening to the S-Town podcast - something I've had lined up for ages but still, late to the party again. It's bloody brilliant and incredibly moving - HIGHLY RECOMMENDED.

If you've read this far, don't forget to give any advice about preparing for our PIP assessment! Thanks.

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.

FOOTNOTE
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…

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.

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.
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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...