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?