Friday, 19 January 2018

top tips for a happy tysabri infusion

If you begin regular Tysabri infusions you'll get a load of bumf with handy tips to help you have a happy infusion. These include relaxing, drinking lots of fluids and eating snacks. Standard.

Here are a couple they missed, based on my experiences.  

1 - Alcohol gel, alcohol gel, alcohol gel
For some reason, it took until my fourth infusion in December for the nurses to tell me that the pain of removing the cannula, related surgical tape and arm hair can be completely avoided if the affected area is totally slathered in alcohol gel, of which they have fecking loads.

FYI: on a chart measuring levels-of-hirsutitude I would be somewhere between an ape and a regular adult human male. I'm not so hairy (or hairless) that people might remark on it. Although Little Miss D will sometimes sit and stroke my arm as if it's a pet dog.

Previous to discovering this modern wonder I had reacted to the discomfort with levels of leg-kicking and whispered obscenities which had been frankly embarrassing for all involved. Now, there are no problems.  

Alcohol gel. Ask for it by name. This blog is nothing if not a public service source of useful information. You're more than welcome.  

2 - Speed up your saline washout
The Tysabri infusion takes around an hour, followed by an intravenous saline washout which also takes around an hour.

(It should be noted that, when first starting this treatment, you can also be asked to hang about for around a further hour to be monitored for adverse reactions. So all in, three hours) 

After a couple of months I'd been able to shave a bit off this - having no adverse reactions to observe and by asking for the washout to be sped up. This has now got to the point where yesterday, when I asked the nurse if she could get it to go a bit quicker, she said, "Six minutes?" I could have kissed her.

I know the nurses wouldn't do this if there was any danger to patients and I'm lucky to be getting on with Tysabri so far. Also, the ward is packed every month and they do need to get people treated and out of chairs as soon as possible.

Maybe they just think I'm an annoying sod and just want rid of me? No worries. I'm out of there!  

3 - Make sure your headphones are plugged in
Self-explanatory really. When I was getting set up for my infusion, I put in my headphones and started up the music on my phone. Thought it sounded weird and tinny so I cranked it up. Then realised nothing was plugged in. Yes, I was THAT GUY who is confused by technology.


As part of the monitoring of Tysabri patients, alongside regular blood tests we need to bring urine samples to each infusion. I always take mine with me but two women in the clinic yesterday had been unable to get one in their own homes and were chugging back coffee and water to achieve the desired result. And they were still struggling to provide it.

The nurses aren't able to proceed with the treatment until they've been able to check patients' urine so it was getting a big fraught (although as you can tell we were all able to discuss this between us all quite merrily and shamelessly).

Both were able to eventually start their treatment but one of them - in a horribly predictable manner - then had to go to the toilet three times in quick succession after being plugged in for her infusion.

If it hadn't been incredibly inappropriate (and very much none of my business) I'd have been tempted to talk to her about my experiences of self-catheterisation. I've been doing it for over a year now and - although it's no-one's idea of a good time (if you disagree, please don't comment. No judgement, each to their own, I just don't need to know) - it is amazing how much more freedom I have in leaving the house. Maybe not at exactly the time that I need to, admittedly, but very much in the correct general ballpark and with considerably less disruption.

For goodness sake, as well making it through my appointment uninterrupted, I even watched the whole of The Last Jedi without going to the toilet once. And that film is LONG and *whispers* a bit dull...

This was the biggest hit from my last infusion (with apologies for the headphone mix up!)

Thursday, 21 December 2017

sit down, be humble

We're lucky enough to live down the road from some great heritage locations. So ever since Little Ms D was born we've always taken her to see the Chatsworth Christmas decorations.

We should've gone yesterday, with my Mum and Mother in Law, but my legs weren't playing ball. I was really pissed off and my frustrations manifested themselves in a display of olympic-standard  ARSEHOLISM, primarily directed at my Dad. I'm not proud of it.

Thankfully he ended up taking Mrs D, The Child and the Mums so at least they didn't have to miss out but I ended up feeling down on myself for the rest of the day. I've not been my best recently - a combination of my recent job disappointment added to Christmas stress and the inevitable feeling that I'm bound to get another PIP knock back from the DWP in the post just before Christmas.

I started writing this on my phone while Tysabri infusion number four was being pumped into my vein. It was bloody chaos in the hospital today. Lots of people dealing with worse situations than mine, it's pretty humbling and puts yesterday's mardiness into some kind of perspective. It shouldn't take that to give me some clarity but there we are.

One thing that has been confirmed today is a sneaking suspicion I've had, that the effect of Tysabri "wears off" - prompted by my dodgy day yesterday and vague things that I've noticed previously. I felt pretty daft when I asked the nurse about it earlier, convinced it was all psychosomatic. But apparently a number of people come in for their treatment saying they're ready for it.

Now we might all be guilty of reading too much in to stuff but maybe yesterday's issues were understandable. I must remember not to arrange anything for the day before my infusions in the future!

And also to be less of a mardy bum hole.

I can't imagine I'll have chance to write much more here over the festive period so thanks for reading the blog this year. It has personally been helpful to get all this stuff out of my head but I really didn't intend for 2017 to be so interesting!

Here's to a much less traumatic time in 2018 for us all (health wise).

The bass on this track (one of my favourites of the year) took me well and truly by surprise when it popped up during today's infusion.

Friday, 15 December 2017

which way now

With wearying predictability I didn't get that job.

I'm disappointed but in a way not that surprised. The jobs I've gone for recently have all been Arts Marketing jobs and my entire work experience has been in this area.

Truth be told I kind of fell into this sort of work when I left university - after applying for a handful of jobs, a local theatre was the only place to get in touch, offering me a work experience placement. Since then I've worked my way through the ranks to end up... in the job which I was forced out of this time last year.

I'm ok but wondering what's going to happen next. I'm not fishing but I genuinely think there's a strong possibility I've been bluffing all these years!

I think I need to take stock and maybe look at working in a different area. Little Ms D has offered me a job telling stories but we haven't discussed terms yet.

Offer the last year a handful of people have told me I should write something. I know the cliche is that everyone has a book inside them. But I struggle having something to tweet about most days - and that's even at the old 140-character rate, let alone the enhanced War-and-Peace 280-character behemoth.

Ah well. Pick yrself up again, Steve.
maybe I should've studied this book a bit closer?

Thursday, 14 December 2017

i can hear music

At my last session my therapist gave me one task which I've been throwing myself into with some gusto.

She told me that I needed to listen to more music. I know, what a slavedriver. But I am nothing if not a good student.

One of my favourite bands has always been They Might Be Giants, who often get tarred with the wacky brush. However, they suffer from the opposite problem to The Smiths, who are mostly hilarious but who people assume are miserable. Conversely, TMBG write quirky, funny songs that have a sheen of cleverness and fun but frequently touch on dark issues such as death, depression and social anxiety.

One of my favourite songs of theirs is called - bluntly - Dead. Call me a simpleton, but I’ve always just read the lyrics as being an original look at the concept of death and reincarnation
I came back as a bag of groceries
as well as fears about the legacy we leave behind
Did a large procession wave their torches as my head fell in the basket?
And was everybody dancing on the casket?
as well as daft regrets and the wrongs we never corrected
I will never say the word "procrastinate" again
I'll nevers see myself in the mirror with my eyes closed
I didn't apologise
For when I was eight and I made my younger
Brother have to be my personal slave
So far so clever (but since when did we see cleverness and expertise as a bad thing?).

But the day after I got my second PIP refusal letter I spent a lot of time playing TMBG songs. I was in a bad way and quite frankly just about ready to give up. And in my heightened state I realised that this song is actually about depression:
Now it's over, I'm dead, and I haven't done anything that I want
Or, I'm still alive and there's nothing I want to do
It seems so bleeding obvious now but a quick look at the TMBG wiki shows that not one person has tagged it with depression or pulled out that theme.

But that line ("I'm still alive and there's nothing I want to do") summed up how hopeless and pointless it felt that day. And weirdly made me feel better.

But it’s not all highfalutin concepts and heavyweight lyrical concerns. Sometimes pop smarts just come at you out of left field and you find yourself playing the same song over and over again.

A quick reccy of YouTube plays and recent Last.FM stats shows that I’ve played this song by Alvvays around 12 times within the last couple of days.

I know nothing about them, they're not doing anything remotely original. It's a song about love gone bad through thoughtlessness or laziness, and musically it’s treading some well worn paths.

All I know is, the way she slurs downwards on the word "psychology" at 1.28 (on the video above) makes my heart go all squiffy.

That one moment makes my day every time I play it, in a way that hasn't happened since the off-beat ride cymbal which kicks in at the end of Uptown Funk (from 3.54). Yes the song is the very definition of ubiquitous but by god that's a Grade A piece of pop arrangement.

So what has all of this navel-gazing got to do with anything?

Yesterday I went for another bloody job interview. I’m waiting for feedback and clinging to the fact that one of the people who interviewed me isn't at work today. But being realistic it's not looking good is it?

However, at the very least this will be (surely?) the last job interview I have this year. So that's something, right?

Play it again, Stevey.

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.


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.