between a rock and a shit place

And speaking of crap gaps… This has been so long coming that I've actually had my first two half doses of Ocrevus by now. NEWS FLASH: I'm not dead.

In fact, each time I've had an infusion, I've tried to write a post. But for one reason or another, they've remained unpublished. So what scintillating titbits have ended up on the cutting room floor?

1. The support acts for the headliner Ocrevus (also known as the pre-meds) are a regular case of the old push-me-pull-you. Intravenous antihistamines knock you out, and then a dose of Steroids picks you up. And obviously, mean that sleep is hard to find that evening. Doesn't really explain how I managed to forget the main side-effect of steroids up until the night of my second half-dose, however…
2. People can be really annoying. Yes, even people with MS. We aren't all saints, y'know.
3. Related to this, noise-cancelling headphones are the greatest invention ever.
4. MS nurses are still great. At the end of the second infusion, one of them came up to me and asked me how I was feeling. Then she inquired about how I was going to be getting home. Then she said, "Before you go, I have one more serious question for you…" She nodded towards the remnants of the food I'd been snacking on.
   "I love those Nature Valley granola bars but I've never had one of the Peanut Butter ones. What are they like?"
   I answered with the seriousness this question required. "Game-changer. Total game-changer."
   

I'm not being paid for including this endorsement - but I'm open to offers

However…

You might remember that when I was diagnosed with COVID in October, I was getting ready to have my booster jab. And actually catching the damn thing put an end to that.

All throughout the period of my two Ocrevus doses, based on conversations I'd had with my Neuro and the MS Nurses, I'd been led to believe that I would have to wait until at least the end of December before I had my booster jab. 

I asked for clarification after my second dose and the nurse said that she would speak to my neuro and get back to me.

But I was totally unprepared when she called and told me that the earliest I could have my next vaccine shot was the end of March.

This is due to the way that Ocrevus works - it's one of yer classic Immuno-suppressors. And it's so good at it that, if I had a Covid vaccine, I wouldn't have much of an immune response to fight the infection and build up antibodies. 

Unsurprisingly, when the MS Nurse told me this, I said I wished that I'd stayed on Tysabri (an Immuno-modulator, if you remember). 

And all of this drama was before the Omnicron variant and BoJo's rapid vaccination roll-out. I've so far had three emails and at least two text messages from the NHS Covid response team inviting me to book my booster jab. It's pretty wearying, especially because we're trying to prepare for a normal Christmas, which - let's face it - it doesn't look like any of us are going to get.

So after basically shielding for all of 2020, and actually getting Covid, I'm in the same boat until the end of March 2022 at the earliest. 

And if by some miracle, Christmas 2021 isn't a total write-off, I'll need to be the ghost at the feast and - to the best of my ability - avoid seeing most of my family.

Weirdly, there's a Facebook group for people on Ocrevus. And EVERYONE has been told different things about when they can get their third vaccine / booster dose.

The most immediate repercussion of this is that I'm going to have to miss my grandmother's funeral next week - it's upsetting but I just can't take the risk.

I know that this sort of thing has been going on throughout the pandemic, but it doesn't make it any less of a shit business.

the crappiest of crap gaps

The crap gap: the period immediately in the lead up to another round of MS medications, particularly infusions, when the patient begins to feel particularly fatigued and "ready for it." Psychosomatic according to some neurologists, it nonetheless fells particularly real to the patient. 

Cast your mind back a few months. I spoke with my neuro about my JC Virus count. As it was rising - and because I'd been in Tysabri for four years - he advised me to change my medication. And due to the nature of these new meds he needed me to have a lumbar puncture to ensure that the JC hadn't got into my spinal column. 

 
I think I wrote quite enough about that particular experience! 

At the time of that initial phone call my neuro said that I'd probably be able to sneak in one more dose of Tysabri before the changeover. Cushty. 

However I think my LP appointment came through a lot quicker than anyone was expecting. And obviously (although - FULL DISCLOSURE - I didn't put two and two together like a div) if I had one more dose of Tysabri I would need to have another LP. 

And as mentioned previously, that ain't happening again. 

So even though I started writing this post a long time ago, after nine and a half weeks without any DMT, tomorrow I'll be getting my first half-dose of Ocrevus. 

In fact, by the time this gets published, I'll be having it already.

And how am I feeling?

Well, apart from being completely knackered, and - oddly - really looking forward to my first dose, I feel pretty good. Apart from feeling pissed off with my neuro.

Because, despite how I felt before every one of my Tysabri infusions. Hell, even despite how I felt before each of my Rebif injections. And despite the fact that every MSer I've spoken to about how they feel between doses has said that the crap gap is real.

Even with all of that, I honestly feel ok. 

 

So my neuro is apparently correct about the crap gap being all in our heads.
 

Bastard.

the one where I get covid

POP QUIZ!

What has two thumbs and COVID-19?

 

This guy!

A little bit of backstory. When we last met I was feeling horribly smug about how easy (sort of) I found the lumbar puncture procedure. 

Well. 

Obviously this led to a SIX DAY headache. 

Steve's top tip: drink as much water as possible. Yes, the nurses told me to do this. But how do you know when you've drunk enough water?

(Apart from noticing when your head stops pounding, anyway)

I eventually got it right when the Divine Mrs. D bought me a water bottle that has hour markings on it. It's surprisingly easy when there's a sort of game involved.

Anyway. 

All during this time it became obvious that COVID was burning through Little Ms. D's school. Before Christmas they were encouraging the wearing of masks, keeping year groups apart and staggering times of the start and end of the day. Obviously a pain for parents with more than one kid but at least it cut down on the crowds at the school gates. 

However in January, everything reverted back to how it was before, including no recommendation about mask wearing. We thought it was insanity and it appears we've been proven right. 

We've been getting loads of messages from the school of confirmed cases, across all the year groups. So it was clear that something wasn't going well.

And at the start of last week - just when I was dealing with my post-LP headache - we found out that one of Little Ms. D's best friends had a confirmed case. At the end of the week she was going for a sleepover at my folks' house so we thought we'd give her a quick lateral flow test, which came back positive, same as the PCR test she did the following day. 

Both me and Mrs. D did a Lateral Flow test that weekend - both negative - but when we did the PCR tests, although Mrs. D's was negative, mine was positive. 

It is, to put it mildly, a massive pain in the arse. I was getting ready to get my COVID booster jab and my flu vaccine, prior to changing my MS medication. Ever since this damn thing started, we've been so bloody careful. And I still got caught out. 

I don't want to come across like Donald Trump *shivers*, but I feel like I've got a bad cold. Having said that, the brain fog is strong, and the fatigue is - dare I say it? - relapse-like. But that ain't happening. 

Infuriatingly, people continue to swan around without wearing masks. And you can't even blame them, can you? Not when the UK government keeps telling people that it's all over. 

Plus it appears to be really going for that whole herd immunity thing, and is more concerned with the economy and getting back to a normal which didn't really serve the needs of the majority of people in the country.

excellent service, would recommend

image borrowed from spine-health.com

So my first ever lumbar puncture was... fine, actually. 

I'd been really worried about it - like two-sleepless-nights worried. And I don't think that's entirely unreasonable. There's just something undeniably weird about the idea of someone putting a needle into your spine. 

What really took me by surprise when I got to the hospital was that I didn't lie down for the procedure. I just sat on the edge of a bed and leant forward onto one of those wheeled bed-tables. 

After a bit of feeling around and the SHARP SCRATCH of the local anaesthetic, the actual needle which went in between L4 and L5 felt more like someone was digging a knuckle into my lower back. There was one odd moment where there was a burning sensation in (apologies, there's no other way of saying this) my balls. Unsurprising when they're rooting around in a cluster of nerves, I guess. 

The most disturbing bit was the noise the student nurse who was observing made when she saw the fluid coming out. A bit worrying, but then I did make a point of not seeing the size of needle they were using. I assume it looked worse than it felt. 

After coming out of the gates at a tremendous pace, things then slowed down to a dribble when filling the second and third vials. But after about 20/30 minutes it was over. 

This was when the headache kicked in. Man, that was something else. The doctor explained why it had started and the reason was one of those blindingly obvious things that you feel stupid for not thinking of yourself (if you're an idiot like me). 

As in: Spinal fluid goes around the brain. If you remove fluid and the subject stands (or in my case sits) up, the fluid will flow down, leaving the brain exposed. Fixed by a big old glass of water and two paracetamol, followed by an hour lying down with observations every 15 minutes. 

Which also included the collection of a freakish amount of blood. Obviously they needed to take some blood as part of my LP procedure. But the MS nurse thought that, while I was there and cannulated, it would be worth doing all of the tests required for each of the three DMTs I'm looking at. Pretty smart. And it saves me having to go back to the hospital for more tests further down the line.

So after filling TWELVE VIALS of blood, and being observed while walking, I was allowed to go home.

My final thoughts? It really wasn't anywhere near as bad I thought it would be. But, y'know: needle; spine; puncture. 

One thing. While I know that's the way a lot of people come to their initial diagnosis, I'm SO GLAD that mine didn't come through this procedure. At that point, everything was so unnerving and unknown.

My first MRI was bad enough. But I would've totally freaked out if the doctor had said, "Just to make sure we know what we're dealing with, I think we should drain off some of your spinal fluid." 

Having said all that, if you're in the position of needing to have a lumbar puncture procedure, in my experience it really isn't that scary. Talk to the doctors and nurses, explain your perfectly rational fears, and take comfort from the fact that you're not alone.

For example, one of my MS Nurses said that the one time that she nearly fainted while training to be nurse was when she witnessed a lumbar puncture.

As I said: needle; spine; puncture. It's not natural, is it?

ah, mr. lumbar puncture - i've been expecting you

16 years after my MS diagnosis, I'm having my first ever lumbar puncture this week.

How have I managed to avoid one so long?

Well, my diagnosis was arrived at after looking at years of medical history - misfiring neurons wrongly labelled as trapped nerves, mostly - and eventually an MRI. 

My lumbar puncture is to see the extent to which the JC virus has invaded my spine. Knowing if this is the case will enable me to make a choice about my next MS DMT. 

At present this choice comes down to three options - Mavenclad (cladribine), Fingolimod (Gilenya) or Ocrevus (ocrelizumab). So two oral meds and one infusion.

Actually, if this test shows the JC virus, I'll be down to a choice of one. 

The main thing that's worrying me about all of this is that eventually I'm going to run out of possible treatments, right? Tysabri is at the top of the tree with regards to efficacy, Ocrevus is on a level with it. So where do I go from here? 

To use a computer gaming metaphor, what happens when I compete the final MS treatment level? Is there a BOSS level which defeats all comers? Or will it just be a disappointing credit sequence?

Most importantly, will this treatment ruin my favourite film of all time?

help me make it through the night

Here's a thing. I've noticed that whenever I drink white wine in the evening I have to get up for a wee in the middle of the night. 

Now. I'm well aware this might not be exactly news to some of you. But hold up.

I'm still using intermittent self-catheterisation several times a day. And even if I have a good "drain" (sorry!) before bed, I still need to get up to go to the loo after drinking white wine.

However, if I drink red wine or beer, I can and do sleep through with no problem. And I'm not totally desperate for the bog when I wake up. 

Full disclosure: I've never been a big drinker. I fact, I didn't even start drinking properly until my second year at University, which was when I finally got the taste for it.

Incidentally, it always seemed silly to me that there are things that you have to "work hard" at in order to like them. Like smoking, drinking whiskey and listening to Wagner. I think that the reason I finally got to like drinking alcohol was because of all the fags and weed I was smoking. Who can say.

Anyway, I'm not saying that we've been drinking more than normal (although we have just moved house). But I do think I need to undertake more extensive research.

But has anyone else noticed that this is an issue for them or not, depending on what they've been drinking?

And, if there any brewologists out there, is there a scientific basis for what I've noticed? Or is it all in my head? 

And finally, if anyone is having issues with their bladder and the idea of self-catheterisation is horrific to them, please hear this. 

For me, it has been life-changing. Yes, it's undoubtedly a weird thing at first. But in my experience, after an initial period it simply becomes a question of logistics and preparation. And the benefits of uninterrupted sleep and the possibility of travel far outweigh the "ick." 

Here endeth the lesson.

where have I been? the answer will SHOCK you

That's my first attempt at clickbait. Sorry, Little Ms D spends a lot of time watching crap on YouTube! How am I doing?

Anyway, it's obvious that things have been quiet 'round here. And as I write this I'm waiting for my next Tysabri infusion to start. So strap in for a long post. 

TL;DR we're moving house.  

To start I'll transport you to a simpler, more innocent time: December 2019. Did we realise how happy we were? Such innocence. 

At this point our landlady informed us that she wanted to sell the house we were living in. 

If you remember even further back, we needed to move into this house after a series of non-physical confrontations with our wanker neighbours. It was quite galling that we were forced to step off the property ladder but, seeing as I was fired/let go/made redundant from my job a couple of years later, this "temporary" move actually worked out ok for us. 

So we understood why our landlady wanted to sell up. And she did get us out of a hole when we needed to move quickly. 

But then 2020 happened! And the housing market stopped, so she wasn't in a rush to do anything. 

So we basically spent all of that year trying to either buy the house or persuade someone else to buy it so we could continue renting. We weren't able to get a mortgage because my business had only been going for a couple of months by this point. 

However, in January of this year, after a number of near-misses, we had to admit defeat. So since then we've been looking for somewhere else to live. And, as I'm sure you can understand, it has been pretty stressful and all-encompassing. 

It hasn't helped that the rental market has gone bananas. We've seen houses and while we've been waiting to arrange viewings, someone has swooped in and got it based on photos. Which isn't an option that is open to us, considering my access requirements. 

But we have managed to find somewhere to live. And it's another short move! Let's look at our past movements:

Mr, Mrs and Ms D - relocation, relocation, relocation

• living in a flat with arsehole late-night DJs, to...
• three-storey townhouse - then moving SIX DOORS to...
• purchase another three-storey townhouse, with arsehole neighbours either side - brief relocation to...
• move-in with my in-laws - moving ACROSS AND SLIGHTLY UP THE ROAD to...
• temporarily (*coughs* seven years) rent

And now we're going ACROSS THE ROAD and SLIGHTLY FURTHER-ER UP. 

Now this should be a really, GENUINELY temporary move before Little Ms D moves up to big school. By which time, we'll hopefully be in a position to buy a house. 

So that's where I've been. Are you as shocked as my title hinted?

loosely-coordinated drowning-avoidance... the return

Earlier this week I went swimming for the first time since February 2020. I think I bought a pass to get a discount. And then the world shut down. 

What with the end of the world as we knew it, adding to my fairly well-established suspicion of people, I wasn't exactly rushing to go there. So instead, I thought I'd wait until the week before BoJo's mass herd-immunity experiment and forthcoming reliance on "good old-fashioned British common sense" (see my earlier point about suspicion of people).

Smooth move, right?

Anyway, I got my bag organised the night before and pre-booked my slot. It was actually pretty good because by looking online I was able to work out which time was going to be the least busy.

So the next morning, I woke up, went to the bathroom FOUR TIMES and got myself down for my 8 am slot. And in a lot of ways, it was much more pleasant than before.

For a start, people are now asked to turn up with their swimwear under their clothes - you removed your outer layers by the side of the pool, so no one had to go into the changing rooms (and run the risk of coming face-to-face - or should that be face-to-arse / face-to-cock? - with some old exhibitionist's unmentionables).

The pool was also divided into three lanes, for fast, medium and slow swimmers. This meant that the lanes were a lot wider than the six I remember from the Before Time.

Some things never change, however. For a start, there was - as usual - some bloke who thought he was Michael Phelps bombing up and down the slow lane. And also, as before, I was the slowest swimmer in that lane.

But that was ok. I'm not going for speed - and I'm certainly not going for distance, particularly. A bad swim is still better than no swim, I've always been told. But one of the old guys in the slow lane asked me if I was ok after one of my first lengths, and then told me I was doing really well.

In the past that would've really wound me up. But this time? I just thought it was actually quite nice.

The day after my mother-in-law asked me if I'd enjoyed myself and did I feel better. "Well," I said, "they're two entirely separate questions."

Because I in no way enjoyed myself but I did feel better afterwards. 

I only hope I get a chance to return before everything shuts down again!

--

Yes, I know that it has been two months since I last wrote anything, and ordinarily, my first blog back would involve a lot of excuses and explanations. But that will be coming next time. Maybe.

my life on (MS) drugs

 

Looks like I'll be changing medication again. Ho hum. 

This will be my fourth change. Weirdly, I had a reminder of my first MS DMT recently. I stopped taking Rebif when the post injection flu-like symptoms just got too much. With injecting three times a week it was like I felt normal for one day a week. 

And if I forgot to take a painkiller beforehand, then I'd be shivering, sweating and "shaking like a shitting dog". Obviously the side effects from my first COVID vaccine brought all those wonderful, flu-like feelings back. 

So then I went to Tecfidera. Which was fine. Two capsules a day was ok and it led me to getting a taste for peanut butter (chunky) at least. 

But this coincided with me trying the OMS lifestyle and diet. Now, either of these things - or both, or neither - might have led to me having the worst couple of relapses I've ever had. As mentioned previously, Your Mileage May Vary. 

So since 2017 I've been having Tysabri infusions. And it has been great.

I never forget to take my meds (something which was true for both Rebif and Tecfidera) because I have to go to the hospital. 

And that has always been the main positive - going to the hospital every 4 or 6 weeks means I get some regular time to chat with an MS Nurse.

Plus the infusions have always been a time where I just need to sit and do nothing but listen to music or make notes or read.

I've always been low positive for the JC virus so my neuro has been watchful. I've had regular MRI scans and so far, there hasn't been anything of concern on them. 

But as I'm low positive and have been on it for over three years, he doesn't want me to push it unnecessarily. Fair enough. 

So he gave me a (horribly small) list of options. An injection, a tablet and an infusion. 

The sainted Ms. Jackie Z (two mentions in two blogs!) shared an article with me called "Switch From Tysabri to Moderate-efficacy DMTs Linked to Worse Disability", which says.... well, it does exactly what it says on the tin. The injection and the tablet are lower efficacy than Tysabri, the infusion is the same. 

So it isn't going to take much consideration, is it?!

Having said that, my most recent MRI showed no new activity and no signs of PML. So according to that there's no big rush on to change meds. I will need to change eventually but it's not as dramatic as it could be.

what's in a name?

Blah blah blah, it's been a while. Super busy, yaddah yaddah. 

I've always been a little uncomfortable with calling myself an advocate. A couple of years ago I went to a seminar about independence and MS treatment. I remember that I couldn't bring myself to refer to the stuff I do as "advocacy."  Instead, I just called it "Moaning on the Internet."

But I'm uncomfortable with the A-word because I really do think I only moan about stuff online. It's what Ada Lovelace / Alan Turing / Tim Berners-Lee / Tron would want. And I do recognise that some people really are great advocates. I have nothing but respect for them.

I suppose I've always been a little uncomfortable about making my MS the centre of my life. Just after losing my job I had an interview for a job with one of the UK's major MS charities (c'mon, there're only two - three or four at a stretch). While I was disappointed to be unsuccessful at the time, I can't think of anything worse than working full time on your own health condition. 

As an aside, I was talking to a friend for the first time in ages recently. I was talking about my podcast work and he asked, "Are they all about MS?"

Anyway, I think currently that I'm basically living next door (or at the very least adjacent) to MS. 

And it's super-dull and doesn't make for exciting blog posts. Not when I'm picking up disabilities imperceptibly, like coastal erosion. It all seems normal until you eventually turn around and realise that your living room is in the fucking sea. 

Picture of the author yesterday.
"I'm sure I used to get up these stairs quicker"

Lockdown has multiplied my pre-existing antisocial nature so that hasn't helped. And neither has the fact that I haven't been swimming for over a year. I can't believe how much I miss it. 

Anyway, back to advocacy.

The other week I clocked the fact that somebody' on Instagram referred to themselves as a MS Influencer. 

I mean, if they're joking that is some next-level darkly cynical shit. 

But if they're not joking.... On what planet is that the right word?

EDIT

Almost immediately after I published this, I got a message on Twitter from the one and only Jackie Z aka The Queen of GSD:

It's definitely a real word. I have complicated feelings about it but it's usually one used when someone is actually getting paid for their info and experience. It's not the right word but capitalism doesn't know how to pay people in our space without giving them a title that they use for other people who we expect to get paid. AND if we expect to get paid for our experience there has to be value in it for the company and they've deemed "influence" to be the reason worthy of payment

 Thanks for clearing that up, Jackie!

And to be perfectly honest, I've been paid for sharing my experiences in the past - at the seminar I mentioned above, for writing articles for MultipleSclerosis.net. So I don't have a problem with that. At all.

But that word, as Jackie said, isn't quite the right one.

up, up and away?

First off, I know there was a big one-year anniversary yesterday. This post is about something else. And I know that my privilege is that the past year has left my family and I mostly unscathed. 

Three years ago today, myself and Mrs D nervously made our way to Philadelphia for a one-and-a-half day conference. Our first time travelling with my wheelchair, and our first time in years travelling just the two of us, even now it seems mad. But it was so needed. 

December 2016: I lost my job and gain a whole mess of financial insecurity. Also at this point I was finishing the first of two failed PIP applications. Good times. 

January to June 2017: I begin engaging with the U.K.'s Kafka-esque benefits system. Dispiriting, especially when combined with applying for many jobs. I eventually got a short term marketing consultancy position. When this ended in June I ran headfirst into two back-to-back relapses, with two separate courses of steroids. As I'm recovering I have my first face-to-face PIP assessment. I think it went well. It did not, and in July my application was turned down. 

August 2017 to January 2018: I reapplied for PIP alongside applying for a number of different jobs. None of these applications were successful, and I was turned down for PIP in January 2018. We then began the appeal process. 

Around this time I got a message from Health Union about their conference in March in Philadelphia. They were offering free accommodation as well as meeting a chunk of our travel costs. For a one-and-a-half day conference. What a mad idea. Who ever thought of going to Philadelphia?

By February we'd received a number of knock backs so it seemed like we had nothing to use. Which is where we came in. 

We flew from Manchester early on Saturday morning, arriving in Philadelphia by lunchtime. A bit of sightseeing on Sunday, a full day at the conference on Monday, finishing at lunchtime on Tuesday, one last wander around, flying overnight and getting back home mid-morning on Wednesday. 

It still seems mad that we did it. But everything seemed to pick up following that short trip. 

In May I got my PIP award (and a couple of years later I reapplied and it was changed into a 10-year settlement). In Philly I met Kathy from FUMS and this obviously led to me following an entirely new career path. 

But the main thing was, it really gave us a huge boost. It was a crazily short trip, and fairly decadent. But at that point we really had nothing left to lose. 

In this case, it was a reminder that travel really can broaden our minds, and showed what we, personally, could achieve. I'd happily go back there - just as soon as I can think of an aeroplane as anything other than a high speed tube of death, crammed full of germs.

bill gates listening party today!

"I can't believe that I spent all this money inventing COVID and the vaccine so I could listen to this CRAP..."

(my working title for this blog was "lend us a pfizer" but even I thought that was too much)

So later today I'll be getting my first dose of the COVID vaccine. It's pretty bonkers that it has come around so quickly.

Only last week, I was talking to my MS Nurse about when I would be getting the vaccine. I'd noticed that some of my virtual MS friends had already had theirs. 

It turned out that this was to do with the different medication we were on - Tysabri is one of the few MS DMTs which modulates the immune system, rather than suppressing it. So it makes me Clinically Vulnerable, rather than Clinically Extremely Vulnerable. 

Good to know!

So I settled myself in for the long wait for Vaccination First Phase Priority Group 6 to roll around - Adults aged 16 to 65 years in an at-risk group.

(Vaccination First Phase Priority Group - great first John Peel session)

Well. Although the UK government is an absolute shit-show, they do seem to have grasped the value in rolling out a vaccine programme at high speed*. So I got a  text yesterday saying that an appointment had been made.

* - the need for speed may be due to a desire to reopen everything ASAP, obviously...

And in a short while I'll be heading to our local Velodrome - I'll let you know how it goes!

SPOILER ALERT: I know loads of people who've already been and it seems to run really well.