Wednesday 29 March 2023

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.

Image shows a book: Kraftwerk by Uwe Schütte
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.

Thursday 2 February 2023

i believe in... miracles?

Over the past couple of weeks I've made a recovery that is nothing short of miraculous. Not 100% back to where I was but maybe 70%. 

Four weeks ago I was completely immobile. It took both my parents to get me on the toilet, and in order to avoid accidents I was going to the toilet every 60/90 minutes. Despite that I was wetting the bed up to three times a night. 

After I stopped taking Tamiflu, I gradually got more strength back (I say gradually because that's how it felt to me but really, I was improving in the first week). Using a rollator I was able to stand up straight, straighter than I do when I use my walking sticks, and walk around the house. One night I woke up needing the toilet and I was able to get there (on time!) on my own. That was big

After a couple of nights of this I've since been sleeping through with no issues - Intermittent Self Catheterisation FTW

Washing during the worst of my days was a scooch of deodorant and a wet wipe or a quick dab of soap and water in my parent's kitchen. My mum washed my hair in the same way. 

Now I'm able to get upstairs and into the shower, washing and drying myself independently. 

FULL DISCLOSURE: all of these little victories leave me utterly exhausted. But still, it's really amazing how it has happened. 

Last week I went home for the day for an assessment with a community nurse. She asked me loads of questions, had a good walk around the house and watched me walking with the rollator (excellent) and my sticks (better than before, thanks to the rollator, but so much more tiring.) 

Earlier today I got a call from the medical equipment company and everything we wanted will be delivered and installed next week. 

US readers: did I mention this will be free of charge? GOD SAVE THE NHS

The main thing is, next week I should be back living at home - for the first time since the end of December.

Thursday 26 January 2023

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?

Tuesday 24 January 2023

an overdue update

First things first. Today, just over a week after I finished my course of Tamiflu, I actually walked upstairs for the first time since the last week of December.

Perhaps even more importantly, I also made it downstairs safely.

When I think about where I was a week ago, it's actually mind-blowing.

Tamiflu is an incredibly powerful drug. And the ten day course really knocked me about.

But the most upsetting side effect of the flu and Tamiflu  was the fact that I effectively lost control of my bladder.

Obviously I was keeping my fluids up and was self-catheterising as well as I could. But even with that I still had about a week where I was waking up two to three times a night having soakedthe bed. And this was even with the use of some pretty heavy-duty incontinence pants/pads - sometimes more than one item at the same time. 

A friend of the family - who is a community nurse - said that my body was solely focused on fighting the flu. So all of my usual MS symptoms were basically allowed to run unchecked, and in my case that included bladder weakness. 

Now I know that people with MS deal with this and more all the time. But as a person who has spent many years working to gain control over his bladder it was a real kick in the teeth. That old MS issue of your body letting you down again. 

For the last few nights, I've been able to get out of bed (by myself, using a rollator) to get to the toilet in time. And for a couple of nights, I've even slept through! Imagine.

What's the point of all this oversharing? 

When I spoke to the MS nurse she said that there are a lot of people with MS who are catching the flu. So if you are dealing with this and your body is concentrating on fighting the flu, you may - like me - go through a period when your MS symptoms start going crazy. As such, the chances are that these symptoms will start to calm down as soon as the flu - and Tamiflu - are out of your system.

I am by no means out of the woods. But I'm walking more, with the aid of a rollator, and I'm doing more for myself.

Having "conquered" the stairs (HA!), we're looking at things that will make it easier for me to move around our home. So like we did after my last relapse, we're getting an Occupational Therapist in to suggest adaptations to make things easier.

So things are going in the right direction.

But still. Baby steps.

Tuesday 10 January 2023

worse than a relapse

Ok. It'd probably be wise to start getting some of this down while it's still relatively fresh.

Christmas Day / Boxing Day were lovely. But immediately afterwards I started getting those old familiar feelings, this time with an irritating hacking cough.

To give Mrs.D and Little Ms.D a break it was decided that I'd move back in with my parents - primarily because their shower and bathroom are more accessible.

SPOILER ALERT: 12-ish days later I still haven't used the shower, although I have washed.

Kindness of strangers

As my mobility worsened, a seemingly endless stream of people - family members, my folks' neighbours and their relatives, old friends, district nurses - busied around the house. Moving furniture, bringing in new equipment, and eventually moving me from an upstairs room to my parent's dining room. Literally picking me up on a chair, and carrying me slowly downstairs.

I can't thank these people enough for the help they provided.

Eventually, I spoke to an MS Nurse who said that what I was going through was likely to be caused by a chest infection - that cough hadn't gone anywhere, either.
A course of antibiotics was prescribed and that was that.
Over the next week there were many challenges - getting to the toilet, moving around anywhere, the fact that any type of food both tasted like shit AND felt completely bizarre in my mouth. There were small signs of improvement, but overall I worsened.

So. At the end of that week, I called the MS Nurse team again.

The one I got this time has already appeared on this blog. She is lovely, a bit bats, but passionate about helping people.

When I told her my story she was fuming. Why did they give me such a weak antibiotic? That's not 
going to do anything. Get back onto your GP and get some proper antibiotics. (As an aside, I have temporarily transferred my medical care to my parent's surgery. This helped speed up a lot of things.)

In order to get more medication I would need to be examined - note that this is the first time I've been seen to get a diagnosis of what's actually happening.

A new diagnosis

I got a home visit on Friday evening and relayed my conversation. The visiting doctor said that the antibiotics I'd been prescribed were some of the strongest available. Also, that if I'd been given any more I'd have been taken straight into hospital and if I'd been given steroids (to combat a relapse, for example) I'd have needed to be placed on isolation.

After observing a temperature of 39.8 C (which for our American friends is something like 103.6 F), he diagnosed me with a particularly nasty strain of influenza - I was the third person he'd diagnosed that evening, but the first one he hadn't ordered into hospital.

So I'm currently in the grips of a very strong strain of flu. I feel incredibly lucky that I have not been placed into a hospital. Sleep is very hard to come by.

Today is day four of my course of Tamiflu (remember that? So retro!). It is very powerful but feels to be working. There are very small but noticeable improvements appearing every day. I'm so disoriented.

According to the doctor I saw, over the 10 days of Tamiflu I should expect to see a lot of improvements, followed by a long slow recovery of around 4-6 months. This is all very much worst-case scenario.

So at least it's not a relapse, right?

Unfortunately things are never that simple. Get diagnosed with a relapse? Ride the insomnia / metallic taste charabang back to an easy recovery.

With this flu I'm still living all the greatest hits of an MS exacerbation with added psychosis, hallucinations, weakness. And all without the possibility of steroids to move it on.