cleaning out my closet

This post has been sitting on my phone for absolutely AGES. After I started writing it, time became... both elastic and static. Lots has happened but nothing has happened. More to come (hopefully?) soon...

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Well. Because simply everyone (err… SwissLet) was asking, here's an update. 

A couple of days after posting the last blog, I called the MS Trust's advice line. I thought about calling my MS nurse back but I thought I'd get yer classic second opinion, about Ocrevus and the COVID vaccine.

I thought my question was a bit too specific but the woman who I spoke to was brilliant. She knew exactly where I was coming from and also knew where my MS team was coming from. She said that they were right to be careful - which strangely made me feel a lot happier. Same result either way. 

I ended up watching my grandmother's funeral over Zoom. As anyone who has had to do this will know, it's better than nothing. But up until that point I was ok about not being there. Watching it from a distance, although the right thing to do, was really upsetting. I imagine it's the same for everyone who has had to do this. There's a reason why we have funerals. And to this day, it all feels a bit like unfinished business. Which is strange, because like I said earlier, I hadn't seen her properly for a long time. 

Christmas was fine. Everyone in our family understood, so they all did Lateral Flow Tests before we saw them and wore masks, at least for a little while. It was a good Christmas.

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I mean, was that even worth the wait?

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 But for one reason or another, they've remained unpublished.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.