Hello, it's me

Haven't seen you in a while!

Actually, I genuinely have no idea if anyone is reading this. Do people read blogs anymore, other than people old enough to remember the internet boom times? Having said that, it seems that this post - an accessibility review of Center Parcs - still seems to be the most popular, having racked up 64,000 views. Weird. 

Anyway, just in case, here's an overdue update. I know how worried I can get if health content providers suddenly go quiet (I refuse to call them influencers). 

I became a little conflicted about the idea of being an MS blogger. To be honest, I was always conflicted.

In order to show up consistently you need content. And with MS, that's naturally going to be health-related. Not that I ever found myself wishing for an incident. But there’s only so many ways to say, "I'm still bimbling along, my legs are increasingly weak, and my underlying symptoms are incrementally worse than they were in the past."

So what’s been going on?

I'm still working as a podcast editor. I still love it. 

Going out anywhere depends on a lot of admin and negotiations. But we persevere when the event warrants the effort. 

We bought a house, and we're very happy there. 

The Child is now a teenager. She is obsessed with music and has adopted my two most expensive habits - buying records and guitars. 

Otherwise, I'm still bimbling along, my legs are increasingly weak, and my underlying symptoms are incrementally worse than they were in the past. Obviously.

Whaddya gonna do?

As I write this, I'm having an Ocrevus infusion - my first in eleven months. No drama, this is just how long it has taken for my bloods to normalise enough so that I will get the benefit of the medication. I’m very pleased that my neurologist is risk-averse. 

It has been three years since my last health incident. I know that another one is waiting in the wings. Let’s hope all my talk of "health content" doesn’t bring it out. 

My brother and I are doing a podcast. It's ostensibly about the music that we wrote and recorded in our dweebily misspent youth, but we also talk about our health issues, as well as other people's music. 

We also encourage listeners to get involved and share their own creativity. Give it a listen if you get the chance. There's a blog where we post related video content, and you can find it pretty much everywhere. It's inescapable.

I started doing a Substack to talk about my podcast-related thoughts but it's hard to find the time to write that, so I doubt I'll write in here again. 

But never say never, obviously. 

Go well, unknown and unknowable people of the internet.

i feel (too?) good

Later today I go for a short appointment with the MS Nurses. Not a full MOT as far as I know, just a catch-up. 

Obviously this is the first face-to-face meeting with them since I was ill earlier this year. So it'll be interesting at least.

Weirdly, last night I finished the book I started reading towards the end of my stay at my parents house. It's a book about Kraftwerk that Mrs D got me for Christmas. It isn't particularly long - I just couldn't focus on reading for the first month, and there are always newspapers and magazines vying for my limited attention.

Kraftwerk by Uwe Schütte

Since I last wrote anything here I've been getting on okay. But I have been guilty of maybe feeling too good. For example, I'll often walk the length of our house without thinking. And then I'll realise that I don't have my walker or my sticks, and I'm now stranded at the wrong end of the house and I have no idea how I'm going to get back.

I've been out with friends and family a few times, and I've been playing guitar and working. On that, the fact that all of my podcasting clients were totally understanding is undoubtedly one of the best things from this whole situation. I'm so glad I've found a new and better way for me to work. 

I'm increasingly aware of how much my illness affected everyone around me. I can understand that they tried to keep their own struggles from me while I was recovering. But just in conversations with Mrs D, our friends, my parents, they'll say something that makes me stop. 

For example, Mrs and Little Ms D frequently shared a bed because neither could sleep. The way our friends rallied around them both and made sure they weren't alone. It's important to remember that I'm not going through this by myself. And I know that. 

But perhaps more importantly, I'm not the only one who was diagnosed with MS all those years ago. My friends and family were too, because it affects them everyday. Not to make me feel any more guilt than I feel already! Believe me there's enough of that. 

But I'm maybe more aware than ever before about the love that surrounds me, sometimes from unexpected places. I'm very grateful and blessed. 

--

The emotional nature of this post might have something to do with the music I'm currently listening to. While I was recovering, the only music I had with me was what was on my phone. Which consisted of our Christmas playlist and the one belonging to my daughter (which has a lot of very cool music on it, I have to say.) 

At one point I downloaded the Bandcamp app so I was able to listen to the albums I'd bought through the site. And I bought a new album. 

"Carvings" by Juni Habel is a collection of spectral folk (new genre alert!) from a Norwegian songwriter (two ticks for Steve's tick list) that was recorded in various rooms in her grandmother's house (recording backstory - BIG tick!)

It's utterly lovely - listen to it below.

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?

another pseudo relapse

Yes, some actual MS-related content!

I think that the pseudo relapse might be one of the cruellest tricks that MS can play on us. A mini exacerbation of all your favourite MS symptoms that lasts for 24 hours.

But what a 24 hours!

There are a lot of colds going 'round at the moment and obviously, I'm not immune. A sleepless night due to coughing and spluttering meant that the following night I woke up feeling like I had locked-in syndrome. Just totally unable to move anything - terrifying.

The following day I was basically immobile. Luckily I'd completed my work for the year but it was scary. Like, I knew it was probably a 24-hour thing, but I didn't know it was a 24-hour thing.

And that's what's so difficult - you find yourself hoping it isn't a full-blown relapse but you know damn well there's nothing you can do to prevent it either way. 

Actually, I think the worst thing might be that we put those closest to us through all of this as well.

Because today I woke up feeling a little sub-par but I was able to have a shower and go downstairs on my own.

I'm very thankful, obviously. But God, how irritating!

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.

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.

National Trust and disabled access during COVID-19

This might come across a bit #middleclassproblem but stick with me.

We've been members of the National Trust for years. As parents of a young (and seemingly inexhaustible) child, we're always looking for ways to use up some of her energy. And getting out in the open air is good for us all.  

PLUS there is, at most properties, excellent parking, great toilet facilities and a place to get lunch and a decent cup of tea. Also, in our experience they really seem to "get" accessibility. 

We live pretty much smack bang in the middle of the country so we've got some great places to visit on our doorstep.  

Sudbury Hall can provide a buggy service from the car park to the property. A similar scheme at Calke Abbey can get you right the way across the whole property.

Our nearest National Trust site is Kedleston Hall, which you might recognise from The Duchess. 

On a visit earlier this year they provided an off-road wheelchair (which was like a regular one but with BMX bike tyres) that by all accounts was a lot easier to push on the short circular walk. It was certainly comfier than my own chair.

HOWEVER…

(You knew that was coming, right?)

We went to Kedleston last week. Obviously in the light of the Coronavirus pandemic, the hall isn't open and we had to book our slot to have a trip around the park and gardens. 

So far no biggie. Forward planning and preparation are the norm for us.

But when we asked if the off-road chairs were available, we were told no. We kind of expected it but afterwards we couldn't help wondering why?

Yes, we know about the pandemic and the bloody New Normal and all that. But...

Why is disabled access the first thing to go out the window? 

Is it too difficult to wipe things down between uses? Supermarkets seem able to do it.

We'd even be prepared to provide our own Flash wipes. 

*other antibacterial wipes are available

Like I say, we expected it. And to some extent we accepted it. 

But the edge was taken off our day. And it was exhausting. 

My chair is heavier to push so Mrs D was worn out. Because I knew she was struggling, I forced myself to walk more than I probably should have. Which was severely fatiguing, which in turn made my walking worse, which was distressing for my family to see. 

The worst thing is...

It's not just at Kedleston

The accessibility options at other local sites such as the ones I mentioned above are currently severely curtailed too.

It's enough to make me feel paranoid.

I've already talked about the fact that people with pre-existing conditions during this pandemic are like the red-shirted officers from the original series of Star Trek. We get it, we're disposable. If not a downright annoyance.

This article in today's Guardian by Frances Ryan notes the fact that, during lockdown, with working from home, cultural events and venues being accesible online...

It was frustrating and joyful, obvious and revelatory. The secret was out: the world could be accessible. Inequality was actually a choice.

But now that things are starting to open up, are those of us with access requirements just meant to stay indoors indefinitely? 

Now don't get me wrong. I know this is only the case with regards to our free time and doing things which could benefit our mental health. We should forget about doing THOSE. 

But if it's getting our butts back into work? 

Come out, come out wherever you are!

By the way, I know Judy G had some substance issues (that's putting it mildly), but the description to this clip is, "Dorothy is recognized as a heroin of Munchkin Land".

Dark times.

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.

pip-pip

And my PIP form is in! After a couple of weeks of pretty intense activity. To be honest it went in the post last week. But y'know. REAL LIFE.

In the first instance we relied on the same sources as previously - the Benefit Advice Essentials Facebook group and our contact from our local Unemployed Workers Centre. All signs seemed to point towards approaching the form as if it was an entirely new application.

Yes, I've gone through the application process before. And yes I can do it again. But it's no one's idea of a good time, especially when you have to fit it in with your workload, hospital appointments, etc. And the thought of the amount of time it would take was beginning to stress me out.

Now several months ago I had to fill in a Work Capability Assessment form for Universal Credit. Around this time, I was chatting to a young woman in the infusion ward about the many hoops that we had to jump through to get the support we were entitled to. She mentioned that there was someone based at the Nottingham Citizens Advice Bureau whose time was paid for (at least part of the week) by the MS Society.

I never contacted him at the time and it turned out that I got the result I needed off my own back.

But for some reason I never deleted his contact details from my phone. So I arranged to go in and see him to talk about my PIP application.

Although I was outside of his geographical area, he said that he could use his own judgment. And the MS Society would prefer him to use his time to support people with MS wherever possible.

He also said that I should bring my form with the evidence I'd gathered so we could fill it in together.

In our meeting he talked for the first hour about everything from council tax reductions to Universal Credit to aids and adaptations, before we even got onto the subject of PIP.

Same as we did for my last application, he approached the form by looking towards a tribunal, getting it as watertight as possible at this early stage.

I should say that he has had a lot of experience filling in (and appealing) PIP applications. He even said that he was involved with the design of the PIP form. The thing about the reapplication form, the boxes are pretty small. So this guy basically scored through the questions that I wouldn't be answering and used the available space to get as much information down as possible.

I mean, who would even think to do that if they were filling in the form on their own?!

He also advised against the prevailing wisdom that this form should be filled in as if you're writing about your worst days. His argument was that, if you fill a form in saying that [for example] you can't get out of bed due to back pain, and then you turn up a tribunal, it immediately puts the rest of your form under scrutiny.

As well as all of this, he said that the fact I was in a relapse during my first assessment (and I then referenced it in my second application) probably wasn't as helpful as we first assumed. The assessor would judge it on a 3 months back, 8 months forwards basis. By that logic they can assume that I'll make a complete recovery and make a judgement accordingly. Interesting!

After going through all the sections and double checking that I was happy with what he'd written, he said that I could take the form home to send it when I got the last bit of evidence I was waiting for. Or he could send it for me as it stood, with additional evidence (a letter from my neuro) to follow.

Obviously I bit his hand off! And the relief was unbelievable.

So now we wait. Again.

Good luck as always to anybody else going through similar trials and tribulations.

four weeks good, six weeks... just as good?

At my recent MS MOT, my neurologist was pleased. No new disease activity, no new symptoms.

His big issue recently has been that I’ve been on Tysabri for over two years. And in all that time I’ve been JC Virus positive.

The JC virus is a common infection completely unrelated to MS. Between 40-90% of the general population have been exposed to JC virus. You are unlikely to know if you have been infected, as JC virus causes no symptoms, and is normally kept under control by the immune system.
However, if your immune system is weakened, the JC virus can reactivate. It can then cause serious and potentially fatal inflammation [my emphasis] and damage to the brain known as progressive multifocal leukoencephalopathy (PML).
- from the MS Trust website

And he told me that, being positive for the JC Virus,  if I was in the market for a new Disease Modifying Therapy now,  he would not be suggesting Tysabri at all.

But I’m tolerating it and doing well on it so we’re going to keep things as they are.

Apart from...

There is apparently a large amount of research which says that Tysabri is just as effective when it’s taken on a 6 or 8 week cycle. So after my next infusion I’m going to try going to 6 weeks.

This scares me a little. I’ve mentioned before that I feel "ready for" my infusion by the time it rolls around every 4 weeks. I’ve mentioned this to my neurologist before and he effectively told me it was all in my head. (To which I almost said, “You’d better tell all the other people in the infusion ward, mate”)

But I do trust him. So let’s see.

He’s writing to my GP to let him know and also to recommend another round of Cognitive behavioural therapy (CBT) .

One thing which was interesting was when, during the conversation, I said that Intermittent Self Catheterisation changed my life.

He looked a little crestfallen, like "I feel bad for you but it's one of those things"

I immediately said, "Oh no, I mean it's changed it in a good way".

Because it really has. Once the logistics are taken care of I can actually leave the house on-or-thereabouts the time that I need to.

He was also a little put out when I said that he often gets the best-case version of my condition, whereas the MS Nurses tend to get the uncut no-holds-barred version (lucky them).

My logic for this is, the Nurses are there to support and empathise, and to make recommendations for my treatment. Whereas he has the power to upgrade my MS from the more benign (HA!) Relapsing and Remitting variety to the (80% of all PwMS) Secondary Progressive MS.

So forgive me if I sprinkle a little sugar on top for you!

I like to think I'm not alone in this. Or maybe I'm just being an idiot?

(not entirely beyond the realms of possibility)

2019 gratitude list

A recent Calm meditation session I did talked about practicing gratitude as an aid to better mental and physical health. In for a penny and all that.

These are the things I'm grateful for - NB I started writing this before the end of last year but REAL LIFE.

1. The two women I live with

Mrs D and Little Ms D. The very best people.

Not only is everything I do impossible without them, but there would really be no point.

2. Family

We have the most amazing family around us. They support and care and do a lot of the heavy lifting.

I like to think they get something out of it too, something back from us. But we know how lucky we are.

3. Friends

I'm also grateful for the amazing friends we have, not just for me but Mrs and Little Ms D too. In a way which I never saw coming we seem to have got a three for the price of one deal, in that the core group is shared on each level between us.

I've been particularly lucky that my friends have been in my circle since my good old days playing music.

We get together regularly, talk shit about music, drink. It sounds wonderfully ordinary but again I know how lucky I am.

In 2019 they pushed me around to gigs, got angry on my behalf when venues were inaccessible (Bodega Nottingham, I'm looking at you), and have even picked me up to drive me to the pub when the weather was particularly crappy (then taking the car back home before walking back to the pub).

Legends.

4. Interventionists

I'm not going to bang on about my Podcast Editing business *ahem*. But in June of last year I had a Zoom conference with Kathy from FUMS and Jackie Z (Queen of GSD).

Kathy I met at HUConnexion in Philadelphia in 2018. I just happened to arrive late enough that the only space left was next to her! Isn't it crazy how things work out?

Jackie has been a virtual presence in my life since... well, I genuinely don't know. I do know that her old MS blog (sadly defunct) changed the way I felt about my diagnosis. To say it saved my life seems a bit too dramatic. But it's somewhere along that line. We've been chatting online ever since, through good and bad times. And the Zoom call was the first time we'd ever spoken.

I've been describing that call as a "career intervention" ever since. Two forceful Yanks telling me that podcast editing might be the career direction I didn't know I was looking for.

By the end of our chat I had a web address and a set of tasks to carry out. Within a few days I had a logo and a website, designed, built and hosted by Jackie.

Ever since then they've been promoting me and sending clients my way. To say that I'm grateful for these two amazing women is one of the understatements of the millennium.

5. Readers

No one comments on blogs anymore. But I know that there are some people out there reading this stuff. And not just this post I wrote about the accessibility of Center Parcs way back when (still the most visited page on here).

Towards the end of last year IASB was even picked as one of The Top 10 MS Blogs to Follow in 2020 by Everyday Health website.

I know it's stuff really doesn't matter but it was really nice to receive this. Especially because they'd obviously gone fairly deep with their chosen episodes. Thanks.

--

So these are the things which I still feel grateful for. And I do feel better when I acknowledge them.

[SPOILER ALERT]

I have a horrible feeling that I'm going to need them this year!

that’s not MY MS...

Parents everywhere will know the "That's Not My..." series of books. If you don't have kids, the pages have different textures and readers go through a process  of elimination - that one's too bumpy, shiny or furry, etc. - until you discover the correct monkey, dinosaur or robot (for example). 

Wow, I sucked the joy out of those sweet little books, right?!

However I've been reminded of them recently.

A couple of years ago I read Jon Ronson's brilliant So You've Been Publicly Shamed. It's all about internet shamings, predominantly on Twitter, where someone speaks out of turn or makes a poorly thought-out joke and, because it doesn't fit in with the accepted view of a particular echo chamber, the other members pile on top of them.

Listen to an abridged version of the book read by Jon Ronson on the BBC.

I picked up on a tweet recently, by someone that I follow.

It seemed pretty innocuous and chimed with my own thinking, so much so that I shared it myself.

However, the original tweet didn't fit so easily with the accepted narrative of a small corner of the Twitter-sphere. Some users picked it apart and got pretty angry. I won't share grabs of their messages, for reasons that will become apparent (and I got permission from Mr S before I started writing this).

Some felt that he was being ableist and didn't understand MS (they could've found out that he has the condition himself). Some reacted as if he was saying that the way they were living with MS was somehow incorrect. Some felt he was basically saying that all the things they were living with weren't that big a deal.


One of the things people are told when they receive an MS diagnosis is that everyone's MS is different. Which is why some people call it a "snowflake" disease - not in the current Trump-presidency alt-right Brexit-era sense of the word.

My initial thinking was that the people responding to the original tweet were denying Mr S' own experiences of living with MS. Plus I've traditionally had a bit of an issue with people who seem to live entirely through the filter of their illness. Perpetually blogging and tweeting about it. Everything was fine before I was diagnosed, everything has been shit ever since, no one understands, no one cares.

My original plan with this blog was to write about how those people had forgotten about the unique nature of MS. About how everyone's "journey" (that bloody word again) was their own. And what did they think the newly-diagnosed would make of these perpetual micro misery-memoirs?

However, I now see that by writing that blog I would be denying them their own experience of living with MS.

Who am I to judge them?

Truth-be-told, my gut instinct is that I agree with Mr S' view. I still don't think it's particularly healthy for people to endlessly repeat the same narrative and have MS as the centre of their being.

But then, I don't think it's massively empowering to (by way of a not-at-all random example) ignore the reality of your increasing mobility issues. Which is exactly what I'm doing currently.

If all the tools of social media had been in existence and so ubiquitous when I was first diagnosed, I can guarantee I would've been using them in exactly the same way that some people do. For God's sake, even an old fart like me has been keeping this very blog going for over 10 years now!

There is a kind of reflexive-perma-moaning which (no matter how understandable) will likely continue to stick in my craw. But I don't have to read it. And if it works for you, more power to you.

It might just be that YOUR MS isn't MY MS.

careful what you wish for

Oof. Crazy busy!

1. I - bizarrely - have a nice and growing number of clients for my podcast business. And I'm getting paid!
2. I'm still not used to talking about my "clients". or my "business". Weirdness.
3. Most of these are just editing jobs so far but I also launched a whole podcast and got it onto Apple Podcasts, Spotify, Google, Stitcher...
4. I'm actually really good at this!
5. Even though I'm LOVING doing the podcast work, I recently applied for another job. I didn't get it but it was nice to go for an interview and not have EVERYTHING riding on it.

All of this is despite the fact that I officially "have limited capability for work and work-related activity". This is from my recent Work Capability Assessment (WCA), something which I probably should've had for my Universal Credit claim way before now.

The first part of this involved filling out... ANOTHER FORM!

Well, it has been a while.

This one was pretty intense. But once again I used the Benefit Advice Essentials Facebook Group for some advice. And as before it was really helpful.

At first glance I thought I could take a good run at the form. But looking at one of their information sheets, it pointed out two things:

• Parts of the WCA form are directly related to parts of the PIP form.
• The Department for Work and Pensions (DWP) could use the information from a WCA form to make decisions on PIP applications.

After reading this, I made sure that anything I wrote on the WCA form didn't contradict anything I'd put in my last PIP application.

I got it done and submitted, then spent a couple of weeks stressing about having to have another face-to-face assessment.

And then I got a letter through the post, saying, as above, that I have limited capability for work. With no need for an assessment.

Which at first seemed like a bit of a result - woo-hoo, etc.

At first.

But then I realised. I hadn't lied on this form. And thinking back, I didn't so much as bend the truth at all on my PIP form.

And then I thought - so maybe I really am that disabled.

Don't get me wrong, it's great that I should get the support I need, especially as I try to establish my new of working.

But nevertheless, it's a bit crap, innit?

(It's that kind of penetrating insight which you keep coming back for, right?)

employment, work culture and MS

One of my favourite podcasts is Beyond Today from BBC Radio 4. The idea is that they talk about one topic from the news every weekday - as they put it, they ask one big question about one big subject.

A recent episode was called "Is the way we work bad for us?"

This was prompted by an office-space company called We Work which has a kind-of Utopian vision of the future of work. But some people say that it creates a culture of 'hustle porn' - people needing to be seen to be busy and competitive and be defined by the way that they work.

This episode also looked at how the quest for perfection has infected many aspects of modern work culture, leading to a crisis of burnout among young people.

I really enjoyed this episode of the podcast (to be honest, I enjoy them all) but I did spend a lot of time thinking "Tell me about it!"

my work history

I was diagnosed with MS 14 years ago. At the time I was working full time in arts marketing, something which I managed to keep doing until December 2016.

I don't want to go into how that played out again - my employer was basically pretty understanding about my health (up until the point when they weren't). But eventually it became unfeasible for me to continue.

Like most people with MS the main thing I deal with is fatigue. The act of leaving the house in the morning - making breakfast, washing, shaving, making lunch, travelling into the office - was one of the most exhausting things I'd do each day. Meaning that I could be wiped out even before I'd made it into work.

Even so, when I requested a day a week where I could work from home (something recommended by a Community Occupational Therapist), I was expected to tell my boss exactly what I was doing and what I had achieved on that day. My remote working was viewed with suspicion, despite the fact that I'd been in post for over eight years at this point.

Since leaving that job I've had a handful of short-term contracts but have struggled to maintain any consistent level of employment.

For a recent freelance contract I'd been open about my health during the recruitment process. Even so, I was expected to go into the office on most days, despite the fact that all of my role could've easily been done remotely.

Why is remote working still viewed with suspicion in the U.K.? Particularly as the primacy of an office-based work culture can effectively keep disabled people and those with a chronic illness out of the workforce? Never mind any macho hustling!

the way forward?

Interestingly, friends in America have shared news stories and links to organisations that seem to point to a more realistic path. See THIS LINK for a story about the value some US Businesses are placing on disabled workers and remote working.

It should be fairly standard practice - but in this country at least businesses might talk about social responsibility and reducing their carbon footprint (for example). And it doesn't seem to make a difference to working and recruitment practices.

The people I know who are either disabled or have chronic illnesses don't want to sit at home living off benefits (despite some media portrayals!). I want to support my family and I also want to keep my brain active. But work will have to fit around my illness and hospital appointments.

Kathy at FUMSnow.com is just about to launch her Patients Getting Paid course, which will help chronically ill people to find legitimate work opportunities that accommodate their health conditions, wherever they are in the world.

A recent FUMS podcast episode was about Chronically Capable, "a platform that strives to connect the chronically ill with meaningful remote work and flexible employers".

This sort of thing is amazing. Why don't we have anything like it in this country?

my (future) glittering career... hopefully

I've really enjoyed the work I've been doing editing the FUMS podcast. And y'know what? I'm really good at it.

Some of the interviews necessarily come with audio issues - dodgy sound quality, even moments where the audio has totally dropped out. I've been able to fix these to the extent that even I can't see where the edit is. I've also started creating additional bits of background music when it's needed.

With that in mind, and with the support of Kathy at FUMS and Jackie (Queen of GSD), I'm currently exploring the idea of working as a Podcast Editor (see the lovely website Jackie designed for me at https://podcastingeditor.com).

If I can make this work for a while it will be perfect for me. So if you know anyone who might need my (very reasonably-priced) help please get in touch!

no sympathy

I've noticed that when a celebrity comes out as having MS, the response of the online community can be a little... troubling.

Initially there's support for 'one of us', a new member of our own wonky club. Plus they're shining a light on our condition. They're demystifying it for the general population. They're showing that life doesn't need to end after an MS diagnosis.

And then... we can often seem to turn on them.

Selma Blair is the most obvious recent example. She came out in a really public way with some upsetting symptoms for anyone to deal with, let alone a young woman. Poor mobility, speech problems. Hard to deal with when you're an actress, right?

I think the snark started when she was spotted using an Alinker walking bike. These are pretty expensive bits of kit, with crowdfunding being the way most people are able to source one.

Did she even have to pay for her Alinker? Is she being paid to be seen using one?

Just recently she has appeared on US TV and Instagram sharing her experience of Stem Cell Treatment. And there've been some pretty harsh comments.

Things like:

"These people have all the advantages. They can't compare their journey to ours"

And:

"They're playing the victim card. I have friends who are dealing with worse and are more inspiring"

FULL DISCLOSURE: I know where this kind of thinking comes from. I'm not judging, it's only natural.

But the thing that can be missed with reactions like this is the fact that Selma Blair is a young parent who has been blind-sided by a life-changing diagnosis.

I think we can all empathise with what she's dealing with. And I speak from my own experience that I have been willing to try anything if there's the slightest chance it can help (hello, Reiki!).

And the fact is, if money were no object, wouldn't you be willing to try anything for the sake of your health?

At the very least (and I'm hyper-aware that this might not show me in the most charitable of lights so bear with me!), I'm quite happy for Selma Blair and Jack Osbourne to be the guinea pigs for Stem Cell Treatment.

Let's face facts, as amazing as it potentially is, it's not yet a fully proven treatment.

Look at what happened to Caroline Wyatt. The BBC journalist paid to have stem cell treatment in Mexico in 2016. And following six months of feeling good she has eventually arrived pretty much back where she was in the first place. In an interview with the MS Trust earlier this year, she said:

"I do know people for whom it has halted progression, equally I know people who've been worse as a result and I know of one person who died."

So I'm more than happy for research to carry on. And for that research to be robust and trustworthy, we're going to need test subjects.

Any results - positive, negative or indifferent - will feed into future treatments. As if on cue, this (from the MS Society) popped up on Twitter earlier today. More please!

We're all dealing with the same beast, regardless of any financial or social advantages - so let's try not to pick fights with each other.

Or as my pithy yet degenerate friend SwissLet put it in a recent comment on this very blog, "Don't be a dick".

It's a lesson I could do with heeding myself.

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