another reason to love ocrevus

One thing I forgot to mention from when I spoke to the MS Nurse recently. She effectively said that Ocrevus was the reason why I'd got all of these infections. 

I've written in the past about how effective it is as an immunosuppressant, stamping down on my immune response for up to six months following each infusion. Previously this has caused me to delay having Covid vaccines and my annual flu jab, simply because Ocrevus is so good at its job. There's no point in having a vaccine when your body is unable to provide an immune response. 

But does this also mean that in the future I'm going to be leaving myself open to every single virus that's going around? At a time when years of social distancing means that nobody has built up any immunity? 

I can't help feeling - yet again - that I wish I'd not had to move to Ocrevus. It's almost like the drug exists to keep me weak and isolated. Previously when I was on Tysabri I was actually pretty healthy. I never really caught anything that was doing the rounds. Plus it was easier to fit vaccines around my infusions. 

Now every time I have an infusion I need to socially distance for a month, according to a note I was given in October (at the end of my first full infusion!).

But really, what are my options? I can't go back to Tysabri because of my rising JC Virus count. And as far as I can tell, Ocrevus is my last option as far as medication is concerned. 

I've heard that changing to a medication with lower efficacy has been shown to increase disability. So is Ocrevus really the last horse in town?

the crap gap - real or fake?

Hold your horses! I know that for many people with MS who take disease modifying therapies, we can all feel like crap in the period immediately before our next dose. A reminder:

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 feels particularly real to the patient. 

When I was injecting myself with Rebif three times a week, I'd always felt like crap on my in-between days. I was taking Tecfidera so often that I didn't have time to feel bad but going to Tysabri infusions every four weeks I always felt I was ready for my next dose. 

The fact that this didn't alter when I changed to infusions every six weeks didn't really change my thinking. Neither did the fact that when I mentioned this to my neurologist and he told me categorically that it was all in my head. 

However… 

As I write this I'm currently having my first full dose of Ocrevus. I had my initial two half-doses in November of 2021. 

So in total, it has been an eleven months wait.

If the crap gap was real, I'm pretty sure I would've felt dreadful yesterday. 

Now the last year has been so uncertain. I've had no idea when or if I'd be getting my next dose of Ocrevus. So I could well have unwittingly programmed my body to power on through because of the uncertainty. If I didn't know when it would happen, how could I feel crap in advance? 

The only problem is, I've had this date in the calendar for the past five weeks. 

Please know that I fully understand that this is only my own personal experience. And when I've felt the crap gap in the past, I've known that it was real. 

But looking at my various DMT timetables over the years that doesn't make sense. 

I'm a firm believer in the placebo affect. And just because something isn't physically real, if it feels psychologically real then to all intents and purposes, it is real. 

I just think it might be a little less terrifying for anyone newly diagnosed or just starting a DMT to hear something like, "Some people start to feel like they're a little run down immediately before they go in for treatment. But it's nothing to worry about." 

As opposed to, "Oh god, I feel absolutely awful before I have my infusion." 

Similarly, the second part of that statement is, "But I feel amazing as soon as I've had it." 

What if before my first/second infusion I felt like crap, and then I didn't feel any better afterwards? What would that do for how I feel about my DMT and / or my future with MS? 

I suppose if the idea of the pre-infusion slump followed by the post-infusion boost makes you feel better, then by all means continue to do you, boo. 

But based on twelve years of research, for me personally, it doesn't exist. And I'm cool with that.

Ocrelizumab: The Mighty Immunosuppressor

picture borrowed from https://www.gene.com/media/product-information/ocrevus - not entirely sure what it means but it looks cool

You may remember, way back before the dawn of history, when I had my initial two half-doses of Ocrevus. That would have been November 2021. 

Ocrevus (ocrelizumab) is thought to be one of the most effective DMTs. And it's quite appealing because, rather than being a daily / thrice-weekly injection, or a twice-a-day pill, or a monthly infusion, it's delivered through an infusion every six months. 

Well, as I write this, in September 2022, I'm potentially on the cusp of maybe having my first full dose. Ten months later. 

Here's the science bit. 

Ocrevus is an immunosuppressant. The good science behind this is MS is a disease where the immune system gets a bit confused and starts to attack itself, primarily the protective sheath (myelin) that covers the nerves in the body, as well as breaching the blood-brain barrier (which leads to scarring on the brain).

So it makes total sense to basically get the immune system to sit down, take a stress pill, and calm the fcuk down. 

Well, it turns out that Ocrevus is really good at its job. So good in fact that I've basically not had a fully-functioning immune system all year. Here's a quote from a recent letter from my MS Nurse.

Ocrelizumab reduces the number of particular cells of the immune system responsible for producing antibodies. Individuals receiving ocrelizumab do not seem to produce enough antibodies in response to COVID-19 vaccination which increases their risk of infection.

Because COVID hasn't gone away (despite what some people say), my medical team and I wanted to make sure I get my fourth dose (plus my flu jab) before I let loose the Mighty Immunosuppressor. 

After three blood tests at the hospital, my immune cell count has gone from 0.4 to 4.12. So I'm now able to get my next dose of COVID vaccine, followed by my winter flu jab, and then potentially my first full infusion. 

Maybe. 

Why any doubt? Well before I have my COVID vaccine, I need to do an antibody test. Then on the day of my infusion, I'll do another at the hospital. And I guess that my infusion will only go ahead if my numbers are correct. 

I am very glad that I have a medical team that is looking out for me.

But it's times like these that I really bloody miss my regular Tysabri infusions.

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.

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?

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.

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.

ms medications roulette

In which I apparently decide to change my medication AGAIN.

An actual fork in the road - from the first Muppet movie

In the sparsely-populated series of positives from the COVID outbreak, one was my recent annual MS MOT. Ordinarily this involves me getting over to Nottingham to see my neurologist for an at-most 20 minute appointment. Even though it's only short it can wipe me out completely for the reds of the day.

The other week, I had the same appointment over the phone.  We talked about my recent MRI results, my general physical and mental state, and a number of topics that I would probably not have been comfortable mentioning face-to-face.

Obviously another thing I asked about was whether I would be able to take the COVID vaccines in the future. He said that being on Tysabri I should be fine, because it isn't an immunosuppressant. Tysabri is an immunomodulator, that works (here comes the science bit!) by creating a wall that stops white blood cells from getting past the blood-brain barrier and into the central nervous system.

So that was a bit of a relief.

However...

As I might've  mentioned before, I've always been a low-positive on the JC Virus test - this is the virus which can lead to PML. As I've been on Tysabri for over three years now, the risk of developing PML is increased. 

As such, my Neuro advised me to start looking at a change in medication. If there is an increase of my JC virus titres (basically the concentraion of the virus in my blood), this will change from "advice" to a "recommendation".

There are basically three options for me:

• Gilenya (fingolimod) - a pil which you take once a day. In clinical trials this led to 50% fewer relapses
  
• Mavenclad (cladribine) - a pill which is taken. in two treatment courses, twelve months apart, It also reduces the number of relapses by about 50%
• Ocrevus (ocrelizumab) - an intravenous infusion every six months, it reduces the number of relapses by about 70% - so this is the only option which is as effective as Tysabri
  

So that's something.

But it turns out that all three of these options are immunosuppressants! Therefore they won't work with the COVID vaccine.

Even better was when I received my standard post-appointment letter from my Neuro in which he basically said that I had decided to change meds. As opposed to what I had thought was the conclusion of our chat - that I was just looking at my options.

What larks!

quite reassuring

I got a letter from my neurologist the other day (if you're as old skool as me, your next thought will be, "I opened and read it, it said they were suckers" but I digress). 

My letter said the following:

I am pleased to inform you that brain MRI compared to the previous scan did not reveal any new lesions.

And then:

This is quite reassuring. 

Quite reassuring?! If we're looking for a two-word summary, I'd probably go for, "Bloody marvellous" or something similar. But maybe that's just me. 

At the very least it means that Tysabri is doing its job (reducing relapses). And all without so much of the MRI-visible side effects (brain infection). If this the most I can hope for, let me have it, yeah?

Ah well, it did make me laugh, mostly because I can totally hear him saying it. Very low-key. 

I told the MS nurses the next time I saw them and they thought it was funny too. This then led on to a discussion about the florid eyebrows sported by all the neuros at the hospital. I think it's a sign that they're so engaged with their work that they don't have time for frivolities such as manscaping. 

I have plenty of time for taking care of my eyebrows. And yet they remain, resolutely, OFF. THE. HOOK.

song for a future generation

I am tired, I am afraid
My heart is full of dread
"Soldier" by Richard Dawson 

This was the unnecessarily "on the nose" soundtrack to my last #tysabri infusion which was no fun at all. It was so long ago, I'm almost ready to go back for my next one. 

I started writing a blog post during that infusion but it was so whiny and angsty that I decided to shelve it until the moment passed. 

Obviously I'm still waiting. 

In a sense, life is - for everyone - an endless, perpetual NOW. Things change and they stay the same. Rules change, restrictions are lifted but the results are the same. 

Life seems to have returned to how it was in February / March. My sleep has certainly returned to how it was then - sporadic and unsatisying!

A complete lockdown seems inevitable so we're stealing ourselves. We're trying to stay abreast of the developments but also trying to stay sane. Keeping things light for our daughter but preparing for when everything changes again. 

I can't help feeling that there will be some kind of global outbreak of post-traumatic stress if/when this ever ends. Yes, my flippant response to anyone asking me how it has been for us is, "Well, I don't go out that much so no change there". 

But really, the first lockdown came at a time when I'd got a little braver at taking risks. Longtime visitors will know that my self-confidence has taken a battering over the years, as my mobility has gone south.

(This is not a situation which is unique to me, obviously)

But at the end of 2019 and at the start of this year, I had been getting better. At leaving the house, at taking (small, calculated) chances. And in the last month or so I've been made aware that I've reverted to my past bad behaviours. Staying in whenever possible and having mild panic attacks whenever I do leave the house. And freaking out if things don't go to plan. 

The pandemic is an exhausting situation for everyone but surely it has to be particularly bad for anyone living with some kind of chronic illness. Not least because of the fact we're seen as canon fodder or collateral damage. 

And all this is even without considering the utterly terrifying prospect of Long COVID. 

But at the same time, we've seen that accessibility IS possible. More and more events have been streamed online. Working from home has been normalised. For god's sake, even my mum and dad are doing their grocery shopping online. 

With the emphasis on getting back to normal, going out to work and supporting the economy, are things eventually going to revert to how they were?

Maybe this will be the lasting trauma from COVID for the chronic illness community. The memory that there was a time when events were accessible and remote working was encouraged. A time when the general populace had a little insight into the fears that disabled / chronically ill people have lived with for years.

That your continued good health is not a god given right. That no-one's job is secure. 

After all that, it would be terrible if everything just returned to the way it was before. 

I am tired, I am afraid
My heart is full of hope
"Soldier" by Richard Dawson

the blogger's conundrum: an ongoing series

Despite appearances to the contrary, I think about writing something here several times a day.

But... well.

See if you can pick the meat off this lot!

I had an MRI scan recently

But I got into the scanner bang on time for my appointment. And as I mentioned last time, it was almost entirely pleasant.

The only bummer was when I had to redo a section because my legs were spasming all over the place.

My last Tysabri infusion was a bit odd

For some reason I'd been booked onto the system on a day when hey didn't even do infusions. Dramarama.

Except not. Because they got me in and out even quicker than normal. Ok I had to sit in a normal hospital ward with some genuinely ill people.

But still. Hardly the stuff of misery memoirs, right?

I recently had a minor medical procedure

It was nerve-wracking but still. No more than 20 minutes of mild discomfort.

Undoubtedly an odd experience. But MS has given me a higher-than-normal tolerance for weird medical appointments.

Not the sort of content which will get me a book deal. Worst thing is, I've not been able to go swimming for two weeks.

Christ. That's it!

I've had some podcast meetings and enquiries. And it seems to be ticking along quite nicely. Could always do with more, so if you know anyone, get them to get in touch via The Podcasting Editor website.

My MS seems to be behaving itself mostly. Sleep can be hard to come by. And I've been waking up pretty stiff most mornings. But the lack of sleep won't be helping that will it? Or the lack of swimming.

If it's ok with you, I'll try to keep it this dull from now on.

scenes from the waiting room

Or "What is up with people?"

I wrote this a while ago but I'm publishing it here because I have a couple of hospital appointments coming up over the next week. I hope posting it will mean I can avoid the sort of person I talk about below!

At the hospital for a Tysabri infusion earlier this year there was a guy sitting next to me who was having a loud phone conversation about how shit his life is. About how progressive his MS is and how few options there were for managing his condition.

But he didn't do it in a self-pityingly morose way. It was like he was bragging about how hard he had it. Like the chronic illness version of Monty Python's Four Yorkshiremen sketch.

I get that this might have been some kind of coping mechanism. But surely that kind of chat should be reserved for home. Or the pub. Not in a room full of people, presumably with the same condition, who are battling those same persistent thoughts about progression and increasing disability and decreasing life options.

Maybe it's just me.

But there were a couple of young people on the ward that day. Maybe they were recently diagnosed? And they looked shit scared.

Bet that didn't help.

Shortly afterwards I saw an older guy giving himself an ulcer by stressing about how the busy nurses were ignoring him and seeing other patients before him. Which obviously didn't make them see him any quicker.

I mentioned this kind of thing to a nurse when I was getting a blood test recently. I said that surely this kind of thing never happened to her.

She said you'd be surprised how much mouth she gets from patients - about waiting times or the environment in the clinic - immediately before she sticks a needle into their arm. You would think they would check their attitude before confronting a nurse who has the power to make them very uncomfortable indeed.

I try to be a nice patient - especially when having a blood test - so the worst I get is a nurse who jokes that it's her first day on the job. This happens pretty regularly.

I always think it's pretty obvious that those who are disrespectful towards the people who are there to help them - nurses, hospitality staff, shop workers - have never worked in the service industry.

Talking about this with some box office staff at the Arts Centre where I was based earlier this year, one of them proposed a new type of National Service. One where people have to do 6 months to a year working in the service industry. Or what is sometimes called a McJob.

I think that overall levels of empathy would only be increased if this was brought in.

seems legit

meeting with my neurologist

I had my annual MS MOT earlier this week. If you're anything like me, you'll have waited all year for a precious meeting with your Neurologist so you write a list of topics and questions in advance.

And after going through them - and doing the "follow-the-tip-of-this-pen-with-your-eyes" trick - you get outside and realise that only 10-15 minutes have passed.

The good news is that the last couple of MRIs have been good - no new lesions, no sign of Progressive Multifocal Leukoencephalopathy (PML) - and he's really pleased with how things are going.

Which is great because you've spent the last few weeks in a state of insomnia-induced high-anxiety. Is this a new symptom? Is my mobility worsening? Or does MS simply continue to be a fluctuating and endlessly slippery bugger?

As I've mentioned before, by the time my infusion comes around I can really feel ready for it. And one of the things worrying me was a feeling that this pre-infusion feeling was getting longer.

When I mentioned this, my neurologist said that this was a "placebo" - I think (HOPE) this was a slip of the tongue and he meant psychosomatic. And anyway, how's YOUR Greek?

So that's cool.

Having said that, when I had my infusion a couple of days later, I felt bloody great afterwards.

This was probably helped by the fact that this infusion (my 23rd) was the quickest one yet. I was in and out in less than 90 minutes, including pre-infusion observation, magic bag o' Tysabri and post-influsion flush.

If things continue as they are (no disease activity on a disease modifying therapy I can get on with), I don't see any need for me to change my medication. Especially because the next option for me - Ocrevus - would involve me having a Lumbar Puncture, something which I've managed to avoid so far.

Even though Spinal Tap is one of my favourite films ever, I really don't fancy it.

LOLZ from the clinic
I wore my FES to my last infusion - but obviously I pulled my shorts up hastily after a trip to the bathroom.

Which resulted in me looking as though I was giving my junk an electrical charge.

extreme new treatement for MS

where does YOUR anxiety go?

Mine goes directly to my legs.

I just did a search for "anxiety legs". This is the top search result:

It is common for anxiety to cause feelings of numbness and tingling. This can occur almost anywhere on the body but is most commonly felt on the face, hands, arms, feet and legs. This is caused by the blood rushing to the most important parts of the body that can aide fight or flight.

Sounds a bit like something we all know and love, right?

And that's my anxiety obviously. But where is it coming from?

Well, I've officially finished my job for the photography festival. But the lack of work isn't even the thing that's making me anxious. As I said before, I was hoping to have a bit of a break between jobs anyway, plus I still have my FUMS podcast work.

The Fampyra tablets are having their usual plateau at present. The MS Nurses have said in the past that this is just how it goes - it works great, then it just seems to stop. So I'm currently having a fallow week (all those GCSE History lessons on crop rotation obviously went into my brain somewhere).

Plus I'm taking an extra week between Tysabri infusions this month, in order to avoid paying an extra £300 for a short summer break (school holiday price rises). So medication issues might be a thing.

More than anything else, I'm just not sleeping at the moment. I'm averaging about 4-5 hours a night, and at least once a week I'll have a night when I just don't sleep at all.

Because of all this I had to cancel my appointment at the Gait lab to check in how I'm getting on with my FES (Functional Electrical Stimulation).

Similarly, I've had to roll back a little on my plan to go swimming more regularly once I was "between jobs" again. I describe my swimming technique as being loosely-coordinated drowning-avoidance at the best of times.

Lord knows what it would be like at the moment.

Image lifted from this great old series of UK Public Information Films - stick around for the brutal ending!

if at first you don’t succeed...

... give up.

Not really, obviously, but it's bloody tempting.

I'm (genuinely) limping towards the end of my contract. But because you can't be too busy, I've recently applied for a couple of other jobs.

One I didn't get further than the application but the other I got to the second interview stage. It was between me and one other applicant. And - ta-daah! - they went with the other guy. To add insult to injury, it's basically the same job that I'm doing currently for a different artform. So that's a thing.

However if I'd been successful it would've meant me doing both jobs at the same time which would be pretty hardcore. Plus Mrs D is very keen that I have a little break when I finish. Especially because I had my most recent relapses within a week of finishing a previous freelance contract.

And truth be told I'm feeling pretty wrung out at present. A combination of long hours and - annoyingly - sleep being hard to come by.

Case in point: I finished writing this post during my most recent Tysabri infusion having had no more than thirty minutes sleep.

So a short break won't do me any harm.

Here's a moment of Emo Zen! 

listening to this song...

 

... looking out of this window in the hospital

 

#sadface

#buttface

#growup 

shame of our nation

Speaking to an MS Nurse at my Tysabri infusion she surprised me when she said she'd had some good news that day. Because she had just found out that her application had been successful and she would be allowed to stay in the UK.

Call me naive but this totally blew my mind. That there was even a possibility that this qualified and endlessly experienced and empathetic nursing professional might be forced to leave the country she and her family call home.

Who's next? The MS Specialist Neurologists, who are all EU citizens? Who exactly is lining up to replace them? 

At the same time, a friend shared a video from the Home Office Facebook page publicising the EU Settlement Scheme. Over some jolly muzak, a series of diverse and smiling family and social groups, presumably talking about how much they're relishing the opportunity of applying to live in the communities they have enriched.

See how happy they are!

 

To say we should be ashamed of what our nation has become is something of an understatement.

moodswing indigo

I started writing this while having Tysabri infusion number 16.

As part of each treatment the MS Nurses have to ask a series of standard questions. Are you allergic to anything. Have you had any infections, cold/flu symptoms, that kind of thing.

One question always provides an opportunity for hilarity: how has your mood been?  

Oh I'm as up and down / miserable as ever. Chortle.

This is because the delightful PML brain infection (Progressive multifocal leukoencephalopathy, sprung from the JC virus) can cause personality change as one of it's first symptoms.

And due to Tysabri's efficiency in stamping on any foreign agents in the Central Nervous System (including the body's own immune system), once it takes hold PML can lead to severe neurological disabilities and - TA-DAAAH! - death. Marvellous.

The Nurse recently told me a story about another MS patient. He was known to be miserable, antagonistic and aggressive to his family and his care team. A proper arsehole.

After a few months on Tysabri he became noticeably more cheerful. He started being more pleasant to live with, stopped picking fights, laughed easily.

The nurses noticed this, became concerned and sent him for an MRI scan which showed the early stages of PML.

Luckily they caught it in time. I wonder how he is now?

take a picture, what's inside

I don't want to sound dramatic, but my first MRI scan was in a kind-of Eastern Bloc-era iron lung in a pitch black room.

So my MS diagnosis came from a machine which was (in my mind) similar to this image of Agent Jeffries (David Bowie) from Twin Peaks: The Return.

I don't think my brother has ever forgiven me for using a mix CD he'd made for me as the soundtrack to this (genuinely traumatic) experience. I haven't played it since.

The scans I've had ever since have been perfectly lovely, however.

Rooms filled with light, with fresh air pumped into the MRI chambers and absolutely charming staff.

Like all things MS, I get that I'm insanely lucky with this postcode lottery. But again say I - GOD BLESS THE NHS.

It's probably a good job that the MRIs are easier to manage. Because after having one scan in 2005 and not having another one until ten years later, I'm know having them multiple times a year - particularly since starting Tysabri. This is to check for physical signs of Progressive multifocal leukoencephalopathy (PML).

Incidentally, my latest JC virus test came back positive but slightly less so than before. Even though I'll always be considered positive for the JC virus now, it's good to know that it can go up and down.

Not that I can do a damn thing to influence the direction of the count, mind.

I had my latest MRI scan earlier this week. It was pretty brief - around 15 minutes - as I only needed my head doing. I asked if they could play some music into the room to help pass the time - the metronomic soundtrack of 10 loud clangs followed by 14 less emphatic beats gets pretty wearying.

(Yes, I counted them. I said it was a lovely experience, I didn't say it wasn't tedious)

They popped on XFM which happened to be playing "Heart-Shaped Box" by Nirvana. I don't think I've heard that properly since I was researching my dissertation, which was all about the semiotics of alternative music in the mid-1990s.

It might sound like a Mickey Mouse dissertation but I got my degree from a proper University, I'll have you know.

Anyway, it was loud (quiet-loud) enough to cover the MRI. So that worked.

Even though this is inspired by her own experiences of an MRI (IRM in French), Charlotte Gainsbourg's song probably wouldn't have helped all that much.

But this live version is pretty great. And the video is way better than the 1990s MTV monstrosity which accompanied "Heart-Shaped Box".

no more drama

Last week was pretty trying.

To start, an appointment with my Neurologist, my first since my relapses last year.

I like him but I can’t help thinking he seems quite keen to rediagnose me as Secondary Progressive Multiple Sclerosis. Yes, I know this is how it goes for the vast majority of cases - is it still 80%? But this figure always makes me think of the following panel from Daniel Clowes' Art School Confidential story:

Clowes D, p.19 Eightball #7, Fantagraphic Books Inc, November 1991

We all think that we're in the 20% because anything else is too scary.

And I don't mean to offend anyone reading this who is already SPMS (or even PPMS). Neither am I so dim to not be aware that MS is progressive in nature in all of its flavours.

But having it in the name of your condition for the first time is going to be hard to take. So forgive me if I want to stall it for as long as possible.

Anyway, the stress of this appointment meant that neither myself or Mrs D slept at all well the night before.

To cut a long story short he was actually really pleased with how I'm getting on. As I think I mentioned before my first test for the JC virus was negative but I am now slightly positive.

Interestingly, although the JC titre [a new word for me too!] can go up and down, because I've gone from negative to positive I will always be counted as positive from now on.

But on the whole it was all good.

After that I had my birthday and a fairly dramatic infusion.

One other person on the ward had to be revived - I've not seen so many panicky medical professionals go behind the curtain around a hospital bed since Little Ms D’s birth.

A nurse - who looked really shaken up - asked if we wanted to be moved to another ward. But as I was nearly finished we decided not to bother.

The person eventually came round and was ok, by the way. At least that's what the nurses said anyway.

However it was still pretty unnerving to see her named on the ward list as a fellow Tysabri patient.

What is this crap I’m having pumped into my veins every four weeks?

Ne’ermind. See you next month!