Thursday, 24 March 2022

philly state of mind

One this day four years ago, myself and the divine Mrs D arrived in Philadelphia to attend the HU Connexion 2018 Event. That whole weekend (we flew to the USA for a WEEKEND) seems like it's from another planet. 

  1. We boarded an aeroplane
  2. We went to another country
  3. We stayed in a hotel
  4. I spent a day and a half, in a room that was filled with over 100 people from all over the world
  5. Not only were these people all clinically extremely vulnerable, but nobody wore a mask

Madness!

I know I've spoken about this on more than one occasion the past. In fact, I spoke a little about it on a podcast that I was on recently

But talking about it on that episode, it hit me again how very important that short trip was.

We were in a pretty rough place at that time. It was just over a year since I'd lost my job. Since then I'd done a bit of short-term freelance work. And then promptly had the most physically and mentally debilitating relapse of my life. 

At the same point in 2017, I was going through the first of my two attempts to get PIP. I think by early 2018 I'd been turned down for the second time, so we were heading down the tribunal route. 

As well as all this,  I was getting no closer to finding meaningful work. And the month before the conference, Mrs D's employers decided that her job was actually a temporary contract. So that was that. 

The idea of going to Philadelphia had been rumbling under the surface since the start of the year - initially I was thinking about going with my Dad. 

But when we found about Mrs D's job, with everything else that was going on, we just thought sod it. Her last day at work was the Friday, and we flew out early Saturday morning.

And the whole trip gave us a massive boost. We could actually travel on our own, with a wheelchair.

Admittedly we didn't go that far while we were in Philadelphia but still. Baby steps.

Later that year we retuned to Italy (with my wheelchair) for a great holiday. I got my PIP settlement. And I got another temporary marketing contract, which helped to keep the wolf from the door.

Obviously - and perhaps most importantly - I met Kathy from FUMS and Patients Getting Paid in Philadelphia, and through her I now have a job that I love and am actually good at, which I can do from home. 

So yes. It was an important break for us. And because of that, Philly will always have a apecial place in our hearts.

Monday, 21 March 2022

remembering live music no.5

Nirvana, live in 1991

Nirvana, Shonen Knife, Captain America / Eugenius - Rock City, Nottingham, 3 December 1991

It's been a while since I've posted one of these. And I don't think I'll be heading out for a gig anytime soon. This memory was prompted by an earworm, which in turn was prompted by Little Ms D's current musical obsession. She loves Nevermind (she's a little too young for In Utero - "Daddy, what does 'Rape Me' mean?") and plays it whenever she can. 

So yes. I am old enough to say that I saw Nirvana play live. It's the kind of thing that sometimes impresses people. But less so when I say, "They were alright."

An explanation.

I was listening to something on Radio 4 a few years ago and in a discussion about favourite music, a female panelist came up with the perfect description. I wish I could remember her name because I've been using this line ever since. 

She said that Nirvana didn't change her life. They were just the end of a musical line that she'd been following through the 1980s. And that sums up how I feel about them. When you've seen Pixies and Sonic Youth, and heard Hüsker Dü, Butthole Surfers, Big Black, Killdozer, Mudhoney, etc… they weren't anything Earth shatteringly new. 

Now don't get me wrong, they were a great band, with great songs and a no-doubt charismatic lead singer.

Plus it was really exciting to hear "our music" being played on daytime Radio 1. I actually remember hearing Smells Like Teen Spirit being played in Nottingham's much-missed Selectadisc record shop and being blown away by how good bit sounded. 

And I'm not trying to say that I heard them first. As far as I'm concerned, that honour goes to my old friend Sally-Anne. We swapped tapes and she had all of those early Sub Pop releases and Dope, Guns & Fucking In The Streets compilations. 

So anyway I saw Nirvana. And they were pretty good. Tight and well rehearsed in the way of most American bands. But, because this was over THIRTY YEARS AGO, my memories are pretty scattered. 

  1. I went to this gig on my own. I don't know why nobody else was around or could be arsed but there you go. I bumped into someone who was more a friend of-a-friend, gave him a lift home and he eventually became the singer in my last band. Strange. 
  2. Captain America (the then-current band by Kurt Cobain's favourite musician, Eugene from The Vaselines) had changed their name to Eugenius by the time the gig happened. They didn't think that Marvel would mind. The past really is another country, yes?
  3. Shonen Knife was very kawaii and buzzy and punk-pop-tastic. Too much sugar is bad for you. 
  4. Setlist.FM has got this gig completely wrong, I think. I'm positive that the first song they played was Aneurysm. 
  5. Kurt Cobain played a guitar solo while doing a forward roll. 
  6. Krist Novoselic spent a good deal of the gig throwing his bass into the air. 
  7. Nirvana had a dancer, who it turns out was the drummer in Derby band Bivouac
  8. It felt like they tossed out …Teen Spirit early in the set. 

Weirdly in researching the date for this post (I threw away all my old gig tickets!!), I stumbled on this video report of the gig. I've no memory whatsoever of seeing a film crew there but some of these kids look like yr archetypal gormless Nottingham Rock City types. 

The interview with the band is the classic alternative scene, make-up-some-stuff-and-riff-on-it-to-confuse-the-interviewer situation. But interestingly, when asked about success, they seem to say their role is to point people to all the bands that came before them (from 4.29). 

A few years ago, I went to see Bob Dylan. I was lucky and got Good Bob that night so came into work afterwards saying that I'd never been in the same room as a living legend before. A colleague said, "Ah, but you were in the same room as Kurt Cobain."

To which I replied, "Yes, but he wasn't a living legend until he'd died."

Sad but true?

Wednesday, 16 March 2022

i was looking for a jab and then i found a jab...

... and heaven knows I feel CRAP today.

So yesterday I finally got my third COVID vaccine. It has been a LONG ASS time coming.

As a reminder, I had my second dose in May 2011. Then a few months later I caught COVID, just about the time my Neurologist recommended that I change from Tysabri to Ocrevus. After having my first two half-doses in November, I then had to sit tight before I could get another vaccine.

Until yesterday - oh, happy day.

The vaccine centre was a lot quieter than the last time I went. Because it's all over now, right? Or at the very least, we're in a place where we're all okay with over 100 people dying unnecessarily every single day, just because some people found that wearing a mask made their face a bit hurty.

The thing that remaned was the pride that the people who were working and volunteering there still clearly felt. Plus how pissed off they are that the UK government has basically washed its hands of them.

It took a while for us all to unpick what my MS Nurse was recommending for me - the letter I had was pretty confusing about whether it was a third dose or a booster. But eventually we went for a third full dose.

It was all good but today I feel like I've been run over. Bleeurgh.

Beats the hell out of getting COVID, obviously.

Please donate to the Disasters Emergency Committee.

Tuesday, 15 March 2022

news from elsewhere

The state of the world (destination: hell in a handcart) means that trying to keep up with a blog just seems a little bit... pointless.

Even if I chose to comment on *all of the stuff* (a task for which I am woefully inadequate), the shit show is changing so rapidly that, if I managed to think of anything salient to write, it would likely be out of date by the time I hit publish.

And all the whining about MS just seems so petty - I have a home and my family is safe and we aren't being bombed indiscriminately. 

All that being said, I do have some things I want to publish. But please be aware that I know that this is all very small beans.

Please donate to the Disasters Emergency Committee.

Wednesday, 2 February 2022

cleaning out my closet

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

---

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

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

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

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

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

---

I mean, was that even worth the wait?

Tuesday, 14 December 2021

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.

Tuesday, 16 November 2021

the crappiest of crap gaps

The crap gap: the period immediately in the lead up to another round of MS medications, particularly infusions, when the patient begins to feel particularly fatigued and "ready for it." Psychosomatic according to some neurologists, it nonetheless fells particularly real to the patient. 
Cast your mind back a few months. I spoke with my neuro about my JC Virus count. As it was rising - and because I'd been in Tysabri for four years - he advised me to change my medication. And due to the nature of these new meds he needed me to have a lumbar puncture to ensure that the JC hadn't got into my spinal column. 
 
I think I wrote quite enough about that particular experience! 

At the time of that initial phone call my neuro said that I'd probably be able to sneak in one more dose of Tysabri before the changeover. Cushty. 

However I think my LP appointment came through a lot quicker than anyone was expecting. And obviously (although - FULL DISCLOSURE - I didn't put two and two together like a div) if I had one more dose of Tysabri I would need to have another LP. 

And as mentioned previously, that ain't happening again. 

So even though I started writing this post a long time ago, after nine and a half weeks without any DMT, tomorrow I'll be getting my first half-dose of Ocrevus. 

In fact, by the time this gets published, I'll be having it already.

And how am I feeling?

Well, apart from being completely knackered, and - oddly - really looking forward to my first dose, I feel pretty good. Apart from feeling pissed off with my neuro.

Because, despite how I felt before every one of my Tysabri infusions. Hell, even despite how I felt before each of my Rebif injections. And despite the fact that every MSer I've spoken to about how they feel between doses has said that the crap gap is real.

Even with all of that, I honestly feel ok. 
 
So my neuro is apparently correct about the crap gap being all in our heads.
 
Bastard.