Tuesday, 16 November 2021

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.

Friday, 8 October 2021

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.

Thursday, 23 September 2021

excellent service, would recommend

Image showing the sections of the lumbar spine
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?

Tuesday, 21 September 2021

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?

Friday, 3 September 2021

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.

Thursday, 29 July 2021

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?

Friday, 16 July 2021

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.