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.

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?

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?

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!

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 thing about the heartsick shut-in

This brilliant song by They Might Be Giants was my earworm this morning. It made me laugh, the way that clever, rhythmically precise lyrics can.

And then I really started to pay attention to them.

Renew my subscription
To "Desperate Bellowing Magazine"
It sure does have a familiar ring
You might say I fit the description
Renew my subscription
To "Miserable Freak Show Quarterly"
Every back-number I saw spoke to me
Acknowledging it's my addiction

Although it would be natural to be tired of feeling like a "heartsick-shut-in", nearly five months into the UK's delayed lock-down, in all honestly it hasln't involved massive changes to my everyday life.

• Still working? Yep*
• Too much? Possibly
• Going out regularly? Well, as much as ever (i.e. not so much)

* By the way, the fact that the government has stopped shielding vulnerable people with chronic health conditions and is effectively forcing them back into work makes me sick. I’d hoped that the pandemic would make employers appreciate the value of remote working. I guess I missed a meeting. 

As I mentioned before, I've been getting more regular exercise than I have in years. In fact, I'm still displaying more commitment to the Joe Wicks exercise videos than the man himself. It became part of our home-schooling schedule so we carried on doing weekday mornings even when Joe went part-time. Plus me and Little Ms D did extra sessions on weekends, and we're still going.

Recently there has been a bit of talk about swimming pools reopening. Much as I miss swimming, I can't imagine anything less likely at the moment.

Like a kind of filthy, random stock-pot! Yikes.

On the couple of occasions I've been to the hospital for my Tysabri infusion, when asked the standard question about if I have any alergies, I have said, "Only other people." I really don't have much faith in the British public's much vaunted stock of common sense.

I mean, it's never a good sign when American friends send WhatsApp messages, mocking events such as the terrible scenes at Bournemouth last month. That's right. American people, from AMERICA, think that we're idiots.

A catchphrase of mine and the divine Mrs D's was prompted by a story on our local news programme. This was immediately after the announcement that people could book foreign holidays, a ruling that, in itself, didn't last that long.

I'm sure that, as I write, the official line is that people are being encouraged to book holidays in order to support the tourism industry. However, they should expect not to be able to travel. I'm pretty sure that, had I ever been arsed to finish reading Catch 22, this might make some kind of sense.

Anyway, in the news report that evening, they interviewed a woman who was going towards check-in with her kids. They asked her why she was travelling. She said something along the lines of, "The schools aren't in, and we'd seen that bookings were possible, so we just thought, 'Why not?'"

To which we responded, "Because there's a frigging GLOBAL PANDEMIC!"

So "we just thought, 'Why not?'" has been a recurring joke, whenever another brainfart recommendation has been mooted. Maybe we have a slightly more sensitive attitude towards risk than most people.

I wanna be a much better person
Instead I worsen with every day
But there's a drug whose name I'm not sure of
Which I need more of to feel okay

Read the full lyrics to Renew My Subscription.

my superpower is resilience

Recently, there has been a lot of talk about how people with chronic illnesses are uniquely made for life during times such as these.

• Self-isolation? All over it.
• Living with medical and health uncertainty? Only for the past 15 years.
• Dealing with precarious times, when you're unsure how long the status quo is going to last? Well, duh. Where've you been?

Sometimes these posts have been subtitled Welcome to our world. And it's hard not to take some pleasure from this idea. Especially when 'people with underlying health conditions' are viewed (and described) as being only slightly above 'red-shirt-wearing Star Trek characters' in terms of current expected lifespan.

- Don't worry, men. I'll make sure you get a decent funeral
- Which one of us are you talking to?
- Erm...

However, there are better reasons than our wonky genes as to why we might be prepared for living through a pandemic. And I prefer to focus on the fact that we're resilient.

We've had the shit kicked out of us. We've been forced to face up, not only to health challenges but also to being seen as disposable benefit-scrounging wastes of space. And we're still here.

We're used to adapting to whatever is thrown at us. Whatever new indignities our conditions bless us with.

In short order, my own trials include (but are not limited to) increasing reliance on a range of mobility aids and intermittent self-catheterisation (relax girls, I'm married).

We're old masters at getting to our feet when life thinks it has knocked us out.

And we're more than used to coming up with new ways of achieving our goals and dreams when the 'normal' route is no longer open to us.

Our adaptability and hard-won stoicism means we can be bloody tenacious. We know that (as I've quoted before):

We may be powerless to alter certain events, but we remain free to choose our attitude towards them

Other reasons we're ahead of the curve.

• We loved the NHS even before it was cool and / or mandatory.
• We've always appreciated delivery drivers, service workers, helpful shop assistants, the kindness of strangers.
• Online shopping is my only kind of shopping

In other news, I don't know about you but on the whole, everything seems really, weirdly normal.

Me and Mrs D tend to get through the days, trying to make sure Little Miss D is happy, fed, entertained. But even with everything we're doing (or not doing) it all just seems totally normal.

It's only when we sit down at the end of the day to watch our self-prescribed limited news coverage that it hits us that we're living through the scariest, strangest times.

Take it easy out there indoors.

social responsibility and hygiene

I started writing this post while sat in what should, by rights, be the safest space in the country. The infusion ward at my local hospital.

If basic hygiene isn't being followed in a room where people are receiving treatment for cancer and respiratory conditions, as well as MS, then we're all going to hell in a handcart.

There's no denying that it has been a weird couple of weeks. At present there doesn't seem to be much happening with Coronavirus in the U.K., apart from people washing their hands. I can't help feeling that a more complete shutdown is only around the corner [see last minute edit below].

I've had the dried and cracked hands of the excessive hand-washer ever since I started self-catheterising. Let's be honest, when you're putting a plastic tube up your junk, you definitely want to be sure that you've got clean hands.

If the only thing that comes out of the Coronavirus pandemic is that people finally get it into their heads that hygiene is for the general good... well, that might be a good thing. As Mrs D said earlier today, maybe people will start listening to actual experts. Imagine that!

I'm currently reading The Death of Truth by Michiko Kakutani. It's a couple of years old but one of its key points - that we're living in a time where every opinion or source of news is viewed as equally valid as the next - still holds true. It's like how racist politicians in the U.K. are regularly given a platform on mainstream TV and news to expound their toxic views because "that's just their opinion".

I'm only two chapters in but it's pretty striking how this sort of postmodern blanket validity, far from being some utopian libertarian ideal, actually plays into the hands of autocratic despots and fascists. Expert opinion can be simply ignored - see also climate change deniers, flat-earthers and anti-vaxxers.

Similar to the anti-vaxxers, I've heard some people saying that Coronavirus won't affect them because they're young with no underlying health conditions. I hope they learn before it's too late that these measures - vaccines, hand washing, self-isolation - only work if we all play along.

It's social responsibility. We all look out for each other. We all play our part.

[edit 12/03/2020 5.28pm] Despite saying that "More families, many more families, are going to lose loved ones before their time", the UK Prime Minister has just announced that he's going to do next to nothing. *slow hand clap*

at the third PIP...

So less than two years after I got my PIP award I'm having to reapply. The DWP takes the day from when I first applied, not from the day they finally gave me my award (after faffing around for 18months).

Yes, we all know that MS is a chronic, progressive condition and that it's a cold and cruel world.

"It's not as if you're going to get better" etc.

But this is apparently where we are. So let's go to work.

And yes, the form does ask if there've been any changes to my condition. As such, you might be forgiven for thinking that if I just said "No" then I'd get get the same result straight off the bat.

But everything I've read says that it ain't necessarily so. So I need to treat the whole thing as a fresh application.

I've got numerous appointments lined up in order to get my supporting material sorted in advance.

I've already met with the contact we worked with last time. And my neurologist. Still to come: a contact at the Citizens Advice Bureau (who one day a week has his time paid for by the MS Society) and my GP.

Even with all of that I'm not kidding myself that this will be an open and shut case. Or easy. I'm not a complete amnesiac!

But all we can do is keep buggering on. So that's what we're doing.

Fingers crossed.

nights that won't happen

David Berman (photo by Cassie Berman)

Silver Jews are a band that I liked and admired for many years. When they first came out, I was very much a fan of Pavement, with whom they (sporadically) shared band members and a similarly fairly loosey-goosey approach to instrumentation and recording.

But gradually the lyrics got to me. David Berman - who has died suddenly aged 52 - was a poet who wrote songs, rather than a songwriter whose songs came to be seen as poetry.

It was obvious that Berman was a man who struggled with depression and addiction. Yet the words were darkly funny, beautiful, heart-wrenching.

So Silver Jews became a band that I loved, eventually providing an unofficial soundtrack to my 2017 relapse. Long time and eagle-eyed visitors might remember the many posts from this period with titles taken from their songs.

They split up in 2009 in bizarre circumstances. And Berman disappeared from view, aside from a few sightings and rumours of recording sessions.

He resurfaced this year under a new name, Purple Mountains. In the intervening years his battles remained constant and he'd split up from his wife and former band mate Cassie. But the wit was undimmed.

The Purple Mountains album is up there with the best of his work, melodic, mordant, melancholy. But despite the journey the songs travel - through divorce, depression, addiction and grief - it seems to end on a level of acceptance and hope. He even talked in interviews about going on tour.

When I read the news of his passing on Thursday morning it was still a shock. I honestly haven't been as devastated by the death of a stranger since the other DB.

No cause of death has been announced yet. But it's hard not to surmise from the details we "know" about him (who can really know what goes on inside another person?) that - intentionally or otherwise - he ended his life.

I know that I and many other people have taken comfort from the way he would report from his front line with courage, clarity, dark humour and endless empathy.

The tragedy is, it appears that his words weren't enough to save him as well.

One particular lyric which has been going round my head since Thursday morning is from Pretty Eyes, the last track from Silver Jews' second album, The Natural Bridge:

I believe the stars are the headlights of angels
Driving from heaven to save us
To save us
Look in the sky
They're driving from heaven into our eyes

That's how he sings it, anyway.

On the lyric sheet it reads, "Won't you look at the sky?", not "Look in the sky". I guess it just sounds rhythmically neater.

But in the written lyric, he's pointing to the sky, imploring us to look showing us that it'll be ok. That salvation - of whatever sort you might need - is coming.

I wish he had been looking too.



I hope there are enough links in this post for you to explore David Berman's work.

There is a brilliant article about the recording of "The Natural Bridge" on Stereogum.

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!