mysclerosis-blog

[mysclerosis-blog]

Fuck MS, fuck fatigue (looking at you too, CFS), fuck this pain and fuck what you've done to my life.

[mysclerosis-blog]

Day 5, and also the fortnight after

So, the final day on the Lemtrada drip went quite slowly, having gotten used to the protocol and really just wanting to be finished with it by now. The rash stayed with me at least in some degree for the entire day and really I couldn’t really be bothered to do a whole lot of anything so I probably didn’t help myself too much there. The two hours of observations at the end of the day felt much, much longer. My blood pressure and pulse stayed pretty much consistent all day, with pulse raising a little towards the end but again, not so much. So could it be, all the fear (from the internet, and also from myself. I really need to work on that overthinking thing) about going through these infusions was wrong? Well, as far as I can tell, well...

Maybe.

There’s no real way to tell how the next year, two years, five, ten, twenty years are gonna play out as far as side effects and secondary autoimmunity go. But for the time being, I think it’s fair to say the actual infusions (for round one at least) were an easy ride for me, and that’s enough for me.

I got home and as I had the rest of the week, fell asleep early and without meaning to. I slept decently, armed with more piriton to keep the rash at bay but by this point it’s been doing better than day four.

So, onto day one post-infusions then.

I slept.

I stayed in bed, refused to move, and s l e p t.

I guess the infusion days themselves were easy enough at the time, but when you don’t have to get up at 5am and leave the house soon after, after a week of having done so, while being administered an antibody that causes a large portion of your immune cells to be destroyed, maaaaaaaaaaybe there’s at least some recovering to do. I chose not to stress too much about it though, settled for food that was easy to make and easy to eat and just let my body get on with whatever it needed to do.

The first few days were more or less the same, but by the time Tuesday came around I felt more or less like myself; as good or perhaps slightly better, thanks to the methylprednisolone. I’ve definitely been pacing myself though, as I don’t know how crushing fatigue would make me feel on top of recovering, and I’ve been with Jessica this week, which has been so nice. I was really quite worried, from what other people had said (need to stop relying on anecdotal evidence from facebook support groups to form my opinions before I’ve gone through it...) that I would be bedridden for a minimum of three weeks, so I’m really really happy about that. We’ve had a really nice time, we went out to the beach to swim the other evening, rubber rings and all which was so fun and I don’t feel like I got as cold as usual. I was still cold, but Jessica agreed it was cold, and I didn’t start shivering in the first ten minutes. I wonder if it’s anything to do with the treatment? I could always be reaching though.

I’ve also done more in the way of creating music, which I’ll have to post another time as I haven’t got an audio file to attach here right now, but I’ve been having a lot of fun experimenting with synthesiser sounds, as well as having a go writing genres I’ve never even attempted to, nor had a clue where to begin with.

Also, it hasn’t been the easiest time emotionally, largely from the steroids I think, but also adjusting to the idea that in a year’s time I might have no more issues with disease progression. Not this disease, anyway. There’s always the chance that I’ll develop something else, but given that the next five years (six if I have a third round of infusions) will be filled with monthly blood and urine tests to monitor for and catch any of those early, I’m not too worried. Not yet anyway. Really I’m just trying to enjoy the present. I’m okay, I’m sat with the love of my life, who just looks more beautiful every day, and I feel confident, happy and really quite peaceful; a nice change, to say the least.

I guess I still don’t, and haven’t, had too much to say about it lately, hence writing this almost two weeks after my final day, but with a potentially awful treatment, I can only really think that’s a positive thing.

[mysclerosis-blog]

Day 4: Yeah, that’s a rash alright.

Despite waking up a tiny bit blotchy just inside my elbows (which passed quickly), day 4 pushed along without much of note happening. Until, and all prior Lemtrada patients will relate, the rash REEEEEEAAAAAAAAALLY kicked in. It was about late morning and I had just had a visit from my MS nurse to discuss blood and urine test proceedings for the next five years, as standard. Between her leaving and my specialist consultant neurologist arriving to have a chat too, the rash had spread across my torso and patches on my legs. Keeping hydrated really seems like the way to overcome this though, as it was mostly bearable until I decided to nap during my observation window, partly to give myself a break from getting up to piss every 20 minutes. Well, I woke up from that feeling itchy as hell all over, but they gave me some more piriton just as I was about to leave, to help keep it bearable at home too.

Once again, the train ride home was rather uneventful. By this point the steroids have started making me a little irritable but I’ve not been brash or rude to anyone so we’ll call it minor. I don’t really remember what happened when I got home but I know I wasn’t awake long. I do remember being itchy though.

Well, cut to a few hours later; it’s dark, I’ve definitely slept for a while and holy shit.

H o l y. S h i t.

I’d been thinking all this time the worst of the rash had likely been or it wouldn’t get a lot worse, but boy was I wrong. I took another piriton and managed to get back to sleep for an hour or two but woke back up even itchier. Big, nasty looking bumps all over me and a lovely mottled appearance to my skin. This time, it took me a really long time to get back to sleep, having to focus really hard on nothing instead of HOW MUCH MY SKIN WANTS ATTENTION AND SOMETHING TO MAKE THIS STOP.

And that’s about all I have to say about today really. That, and I’m writing this ‘tomorrow’, already set back up on my IV pump, receiving day 5’s Lemtrada currently. It’s becoming a trend that I’m writing later and later after each day, so I’m assuming it’s all catching up to me slowly. And it’s safe to assume that this rash is going to be completely unbearable tonight and maybe the next few days too, but I’ve got plenty of water to drink and my final cannula is out at the end of day 5, so another bath is well and truly on the cards.

Before I know it, I’ll be a year 1 lemmie graduate.

[mysclerosis-blog]

Day 3: The rash makes a (minor) appearance

So I didn’t manage to get back to sleep after finishing up yesterday’s post and in fact today it’s almost 4am that I’m writing this. Day 3 was very smooth sailing once again. Again, as in day 1, I slept a lot of the day and didn’t even bother to get my laptop out of my bag. It didn’t feel like the day to really try and push myself too hard to do anything though.

I managed to stay awake through the steroids and antihistamine IVs but more or less as soon as the Lemtrada started pumping I decided to rest my eyes. For about three hours, more or less taking me to the end of the actual infusion, leaving I think it was about 40 minutes of Lemtrada and the hour saline drip, followed by the two hour observations. My heart rate and blood pressure have remained very stable throughout the last 48 hours, even when testing at home, and the excessive sweating from day 1 has not returned in the least, which is nice. I was out of the hospital before 4pm, and the next two days are supposedly going to take less time (provided there are no snags requiring attention on these two days without steroids) and I’m feeling optimistic.

Not long after I woke up, however, I started to develop a fairly light rash, mainly at the tops of my arms, fairly similar in sensation to when MS decides I should be permanently itchy anyway, so I wasn’t even really concerned or upset about it. By the end of observations it had more or less completely left as well, so I really can’t complain at all.

I had my cannula out today as well, bandage and all, giving me a clear conscience about getting my arm wet and getting myself infected from a soggy bandage. As soon as I got in, feeling pretty invincible from the steroids and earlier release, I ran myself a nice hot bath and washed my hair, ready for the fabled hardest two days of this treatment. As I’ve mentioned, not being given the steroids on days 4 and 5 will allow for greater scope into how well I cope without the immune-dulling effect of them. The piriton will still be administered, though, and I think they’ll give me some to take home with me too. All in all, aside from choosing what I want for lunch each day, this whole week so far has been entirely bearable. I’m feeling quite the tit for all the fear and anxiety I’ve had in my mind all this time about it, but at the same time I know it will likely be months-to-years until any of the potential long-term side-effects show their faces. With five years of monthly tests as standard post-treatment, I’m not too concerned though.

Day 3, signing off (near the start of day 4 haha), wishfully thinking the rash will be kind.

[mysclerosis-blog]

That’s exactly what I’m trying to avoid tumblr 🤔

[mysclerosis-blog]

Day 2; becoming more of a lemmie

So, despite sleeping most of the during yesterday’s infusions, not long after I got home I slept. Heavily. The slight headache persisted through the night but I didn’t take any paracetamol or anything so I guess you’d expect that; I remember my previous round of steroids having a similar muzzy-headed effect so I wouldn’t be surprised if it was mostly from that. I made sure to keep drinking plenty of water when I woke up, but not so much as to cause problems staying asleep after. In the end I woke up fully around 3.30am. Ideal, if you ask me. I had plenty of time to sit around and check up on how I felt and keep hydrating (today I arrived at the hospital ready for my piss sample, so everyone’s a winner).

So, come 6.30, it’s time to leave the house again to catch the train, feeling quite optimistic. I’ve had one day of this now and while it’s not the absolute easiest thing I’ve ever done, the memory of having a kidney stone just a couple of months ago pales this in comparison. The train ride itself went quickly, probably because I didn’t have the what-ifs about what was in store for me today.

So once again, I’m here at the hospital, sitting in my bed. I’ve had my steroids for the day as well as my piriton and am now sat with more of the good stuff running through me. It’s a grey day but I’m not really upset about it. Hopefully it’ll stay nice and cool in the room, should my temperature rise again like yesterday. For now though, I guess I’m just waiting to see what happens. There’s not really been anything of particular interest today that didn’t happen already yesterday.

Well, I really didn’t have much to write today. Time passed so quickly. My half-hourly blood pressure checks felt like they were five minutes apart, some of them and even the nurses agreed. I must’ve been receiving the Lemtrada at a fair pace, also, as the infusion bottle was empty by 3 hours 30. I had no adverse effects today and even felt better than day 1, which I’m assuming is either due to sleeping better beforehand, compounding steroids in my system, or the room being cooler, or a mix of of the three. Either way, I hope it keeps up like this.

I felt good enough to get started on composing some music today, writing a fairly simple bassline and some chords. It’s a lot simpler than most of the music I’ve ever written but I’m really out of the loop on it, having spent most of the time since my degree running away from music and having lost my nerve with it all, so we’ll see what happens. Either way, at least it sounds nice to me and at least I’m actually doing it for once. We can build up to the good shit later.

My blood pressure dropped low at one point, but after drinking some more water as advised, it went right back up. Even through my observation period it stayed that way and as soon as my two hours were up I was allowed to leave without any further treatment or observing. I left today feeling really quite optimistic; more so than yesterday. Tomorrow marks the halfway point in this treatment, and likely the end of the easy days, given that days four and five are administered without the steroids so I’m likely (I’ve been told definitely) going to come out in a rash from it, but more piriton should help subdue it. I’m quite thankful for the fact they don’t administer the steroids towards the end though, as they do it to monitor how well you react without them.

As a bonus, I’ll attach what small progress I’ve made in writing today, although it’s simple and very unfinished. I’ll probably work on a melody tomorrow though. I wrote it on Sibelius, so it’s all digital sounds, but as I’m not working, maybe I can teach it to myself and record it in my own time. After all, when you have this much time to yourself, having a project can only be a good thing.

Well, I guess this is day 2 signing off. Less of a noteworthy day, but that can only really be a good thing. I didn’t fall asleep until a few hours after I got home and I’m actually writing this after waking up around midnight, but I’ll be back off asleep before long I’m sure. Also of note, I barely have any headachy feelings and my chest feels much lighter today than yesterday. So far so good.

https://soundcloud.com/paiste_rude/lemtrada-day-2

(For some reason tumblr won’t embed the soundcloud player, sorry)

[mysclerosis-blog]

Day 1 aboard the Lemtrada express

So, as anyone could’ve probably predicted, I didn’t manage to swing my sleep cycle round to wake up feeling nice and refreshed nice and early in the morning. Instead, I’ve been awake the better part of 12 hours so far and  I’m just into the start of my actual Lemtrada drip, post-steroids, post-antihistamine, post-tests, post-whatever else. So far the hardest part of my day has been the train ride (I can never make myself quite enjoy sitting on a train with my phone signal ducking in and out, surrounded by strangers) of almost an hour. That and trying to piss on command, since clever me forgot that basically every healthcare provider I’ve met this year has wanted some of it.

So, needless to say, I didn’t quite arrive here bright and breezy, but the staff have all been kind and really nothing less than pleasant has happened so far. Mum is with me for moral support and will be throughout the week. It’s a shame you can’t bring pets to the hospital too cos I think Odin might’ve been a bit lonely. The steroids have made their way to my tongue but that seems to be subsiding already; helped along by a chocolate spread sandwich of course. And the piriton has me feeling a little groggy but really it’s nothing major. So far, I have to say, I feel like all the anxiety relating to today was a little misplaced, but we’ll see what comes. I promptly fell asleep.

I’d brought my laptop and everything I’d need to make some music but ultimately, trying to read and interpret what the knobs and dials on the software synth needed to move to to get a nice sound, coupled with the drowsiness,  proved enough to make me decide today was definitely not a day for this. So I slept for most of the day really, not the best sleep, fully clothed, with twice-hourly visits from the nursing staff to check blood pressure etc, but ultimately fairly restful. I woke up with a headache not unlike a hangover but after some water it had mostly subsided in not much time. I’d read from a lot of people on the Lemtrada facebook group I’m in that water is key to having a decent time so who am I to say no?

Around the time my infusion ended, my food arrived; a dry slice of brown bread (I actually really appreciated this, in truth), a very nice home-made margarita pizza with peppers, onion and tomato pieces on, which tasted a lot like mum used to make us when we were kids; definitely tomato purée for the tomato sauce. It was nostalgic and quite comforting really. I also had a small square of what I think was Dorset apple cake. Altogether quite a nice meal, although I’ll be aiming for the vegan route the rest of the week. Partly because the main reason I was offered food (the unit never really give food to their patients) was because mum had rung in ahead of time to tell them that I was vegetarian/sometimes vegan. So having had special provisions made for me, I chose one of the least vegan things on the menu. The fear of an angry mob...

So, my actual Lemtrada infusion is finished and I’m receiving just a bit of saline to make sure the Lemtrada in the drip tube is all going to good use and feeling mostly okay. I’ve started to sweat but the sun’s out and the temperatures is in the twenties – not something I’m used to, so it could be that. Things are running smoothly for the next two hours that they’re keeping me in for observations, in case any reactions or anything spring up. My blood pressure is a little low, I’m a tad clammy and my breathing feels a tiny bit laboured so I’m given paracetamol and that does the trick. Over the course of the day I’ve drunk more water than I probably would’ve even on a good day and I’m feeling honestly a lot better than I thought I would. Mum suggests catching the bus back to the train station but it seems pointless to me. It’s probably the steroids talking, but I’m feeling really quite good.

The train ride home passes fairly quickly and without much of note to really mention. I saw some fluffy cows (I saw about 40 deer on the way to the hospital, I forgot to mention) and some other animals but anyway. I called Jessica but with the signal in the South-Western countryside being sketchy at best we only got to speak a few sentences before my signal went completely until I’d gotten home. It felt good to give positive feedback and hear her gorgeous voice again. I’m feeling that, while today is probably going to have been the easiest of these days, I’m sure I have it in me to complete this week without too much issue. Bring on tomorrow, and bring on the rash I’m almost definitely going to suffer by the end of the week.

20% of this year’s work is already done.

P.S. I look chic af with my cannula bandage. Saving time tomorrow in style.

[mysclerosis-blog]

03.00, Sunday 9th July; Lemtrada eve... sorta

So technically it’s not quite Sunday cos it’s only 3am but, technically it is, I guess. In about 27 hours I’ll be waking up to get myself ready to take the train to the hospital to have my first day of infusions. 27 hours. It almost doesn’t feel real but also, almost a little too real. It’s exactly a week until the sixth ‘monthiversary’ of my diagnosis, as well as also being the one-year anniversary of not being able to completely feel my feet. It feels like I was diagnosed really recently, but also like it’s been an eternity of waiting to start this treatment. I’m not entirely sure which way of looking at it is nicer.

Regardless, here we are, right on the cusp. My sleep cycle has been awful and while it’s 3am, I slept earlier in the night and sometime yesterday morning so I don’t feel too tired. With any luck I can keep swinging this around and not be absolutely exhausted even before the infusion starts on Monday.

So, my feelings? Right now I’m feeling antsy, but that���s not unusual for any period of time I’ve had unpredictable insomnia like this, and there’s been a lot of them over the years. Maybe the well of Lemtrada worries has run dry, but I’m not so much into the idea of testing that theory. Mostly I just want it to start, and end, as soon as possible so I can overcome the initial fatigue as quickly as possible and see Jessica. It is summer, after all, and I’d rather be spending it with her gorgeousness than sat around waiting for treatment and recovery.

The other thing I’m excited about; after these five days that’s me done for the next year. In the meantime; rest, recovery, self-care and immune reconstitution. And growing back into the areas of my life MS has taken (perhaps altered is the better term to use here?). And then more of the big hammer (Lemtrada is well and truly the big hammer when it comes to MS treatments, isn’t it really?), and then HOPEFULLY that’s me set for... well, the jury’s out on that but preferably until someone finds a cure. And puts it through trials. And approvals. And I’m getting a bit ahead of myself...

I don’t really have a lot to say besides that but who knows, maybe getting it out of my fingers will help it stay out of my head so I can relax a bit better.

[mysclerosis-blog]

Five Days To Go

So, first things first, I've been meaning to write for the last two days not really succeeded in that. Also, in my last post I mentioned that I was having Lemtrada something this month. Well, I'd tried to change my appointment dates to the week starting July 31st rather than July 10th. It turns out that despite ringing the hospital switchboard to get forwarded to the wrong people, they diverted me to the wrong ones. With a gig coming up that I really want to see coming up on the 18th of August, that actually works out in my favour. So, anyway.

Here I am, five days before my Lemtrada infusions begin. So far, for the past few weeks, I've been not quite nocturnal, instead rocking a 6-9am til 2-4pm sleep schedule. Given the length of the infusion process (potentially up to eight hours including the intravenous steroids before the actually Lemtrada, the Lemtrada itself, and the two hours of monitoring for adverse effects post-infusion),  this isn't a great idea, as my days for the whole of next week start at 8am, after travelling roughly an hour to my actual infusion clinic. I knew treatment was never going to be the easiest ride thanks to side effects but the potential of being already tired by the time my infusions start, as well as the steroid rush isn't the most attractive vision I'd had for attempting to sort out this mess.

Regardless, after months (read: too long, for myself and for those around me. Jessica and mum, thank you for not telling me to piss off and fuck myself, even though I think I've deserved it) of preparing myself mentally, researching side effects and being educated on the risks, it's finally becoming a reality. By next friday night, I won't have a very functional immune system at all. I might be a year away from my final doses of what isn't a cure, but might correct my friendly-firing immune system. Of all the emotions running through me right now, I'm trying my best to cling most firmly to the 'almost excitement despite all the fears and inconvenience of not having a functional immune system'.

There isn't a lot more I could do to prepare myself, bar drinking more water (A LOT more should probably be my aim, given what I've heard...). I have Pro Tools and Sibelius 7 (music production and composition software packages) set up on my laptop and I've already begun having a look within myself to see what sounds I have living inside me. I'm almost motivated to get stuck into my musical endeavours, despite having my mind firmly fixed on treatment. I've been playing guitar most days since I got it and I can feel calluses already developing, as well as my speed changing chords improving a little each day (I haven't actually blown down my trumpet for a few weeks but with my most recent bout of fatigue I think that's for the best...). I'm going to be contributing some music to my friend's documentary series, History and Geography in Tomb Raider, for the third installment (funnily enough, covering Tomb Raider III) and I've already finished writing one piece.

I don't have much related to MS to say really, other than that despite the potential downsides of my treatment, I'm apprehensively excited to get stuck in to 2017's work in getting it under control. That and having my blood and piss analysed monthly for the next five years. I can only hope they both do good this entire time.

Blog post #2, signing off. Much love to anyone with this disease, and anyone undergoing Lemtrada treatment.

[mysclerosis-blog]

The Story So Far

Hi, I'm Jacob. A lot of people call me Fent/Fenty, I'm 24 and I have relapsing multiple sclerosis.

That's all I can think about a lot of the time; that and I see most of my life through the scope of MS. I'm new to this, you see. I was only diagnosed in January after more than a year of trying to find out what was actually going on with me.

I've never been a stranger to fatigue, due to being diagnosed with chronic fatigue syndrome at 12 years old. On top of that I've had experiences with sciatica causing nerve pain and reduced sensation through my legs and especially feet.  It wasn't until I'd developed a tremor in my right hand and a lack of coordination in my my limbs in November 2015 that I had any idea something was wrong. I've always been a drummer for as long as I can remember and at the start of my symptoms fresh off the back of a music degree (contemporary world jazz music, to be exact) with first class honours. Not for much longer. Not in the same way at least. Around this time I met my love, Jessica. She lives 300 miles away but I have a car and since we met online a few months ago we've fallen deeply in love. Throughout all of what's happened through my journey with multiple sclerosis so far, she's been so patient and understanding that even in my fearful attempts to show her how hopeless my future is or whatever feeble thing I've been telling myself, she's stuck by me and shone a light on me that is honestly about the only thing that's kept me hanging on at times. Enough mush for now though, on with the story...

The uncertainty of when or if my tremor and coordination problems were going to return shook my confidence, already having lost a lot of my skills. Since then I've barely played, and I've not written a piece of music since either, being more disenchanted with music than I thought I could ever be. More on this later though.

I opted not to go to have a referral to a neurologist right away, thinking it would just go away. Over the coming months a whole load of other interesting things happened though, including intermittent (and PAINFUL, let me tell you) cramping of all of the muscles on my righthand side, often making me fall to the floor on my side until it passed. The symptom I notice most, though, is the reduced sensation in my feet and up my legs. Having mistaken this for another, very persistent, sciatica flare-up, I was stretching very frequently and noticing no real improvements. Even my chiropractor said she couldn't find a single knot or tight muscle in my back. On July 9th it will be a whole year since I had complete and uninterrupted sensation in my feet. Happy anniversary...

Fast-forwarding to when I finally saw a neurologist in September 2016, he couldn't see much wrong with me and took my symptoms to be an exaggeration of my natural essential tremor, caused by my underlying health (my degree and life events around the time had really worn me out) and said there was a very minimal chance it could be something more sinister and if I wanted, he could run some tests. Yes please!

In November I had an MRI and a blood test done, the results of which were published around Christmas. There was a long wait to actually be told the results by my neurologist, but in the meantime I'd had an appointment with a psychiatrist who had actually seen my MRI results and told me (erroneously) that I probably had Wilson's disease - a super rare disease affecting copper metabolism that can cause neurological symptoms. Great, I thought. I can get treated for that, get this copper out of my brain and be back to my normal self in no time, right? Well, as I found out almost a month later, and I can't stress this enough; hell fucking no. On the plus side, I now have a few minutes of conversation to fill with facts about Wilson's disease if it ever comes up in conversation... which I'm not expecting to happen any time particularly soon... Anyway, my GP had printed off the radiologist's report on my MRI scan, which didn't have a diagnosis, but described what the images showed. Now, I'm the sort that will research things I don't understand, particularly when it comes to psychology and biology. Doctors probably hate me. Regardless, in amongst the jargon like "T2 weighted" and "FLAIR", whatever they meant, and wherever the areas of the brain were whose names I couldn't remember for you if you wanted me to, I spotted a word I'd never seen before. Demyelination.

D e m y e l i n a t i o n.

That doesn't sound like copper to me, and it doesn't sound like the telltale characteristic sign of copper deposits in the brain á la Wilson's. And google shows no results for "Wilson's disease demyelination" (Remember i said that doctors probably hate me?). Well, googling demyelination tells that the most common demyelinating disease is multiple sclerosis. Right, okay... That thought can stay buried deep then...

And it did. Maybe it was one of the other demyelinating diseases. Maybe it was something easily fixed. Maybe it wasn't that. Maybe it was something. I'd take a medical anomaly, anything, at this point. But in my head I think I knew. I went to the neurologist's office for my followup appointment January 16th 2017, and then this all became a little bit real. And then a lot real. I'd heard of multiple sclerosis. I had no idea what it really was. I has no idea about it at all really except a small amount I'd read the weeks previous. But there are some sentences you expect to never apply to you that all of a sudden do.

"I have multiple sclerosis", I would say out loud, almost with a smirk, trying to tell myself. Trying to make myself believe it. But I couldn't. Not yet. The only real positive I've heard today is that the MRI I'd had in 2014 to check for ear canal obstructions was clear, so it's less than two years I've had this. But still, it's hard to focus on a small victory such as that when, still, "I have multiple sclerosis" isn't a lie anymore.

And so begins the dissociation. And the reading. So much reading, so much information, so many different opinions and 'cures' and fixes and treatments and advice and research and studies. But I'm convinced I'm going to be the first person with this disease that completely beats it. For a few weeks. And here comes a relapse.

I'm not so bulletproof now. I can barely walk without tripping over my feet and my legs are spasming ridiculously. I need help to walk and my left hand is so slow and cramped up. I can barely feel anything from 6 inches above my belly button and my nerves HURT. What luck that I'm meeting my MS specialist consultant neurologist this week though. Some oral steroids  (first prize for 'worst taste on earth', congratulations methylprednisolone!) have me sorted out and somewhat bulletproof again, but the reality is starting to set in now. My consultant has given me the names of two treatments to research; Tysabri and Lemtrada. Yay, more reading. Cos I haven't had enough existential crisis by this point.

Next come the lows, lower than many of the lows I've experienced before in what I wouldn't describe as an easy life. Those stories are for a different day, perhaps a different blog, I haven't quite decided yet. Getting to grips with this disease and the uncertainty of every day is an interesting task; rarely a boring one and never an easy one. I feel like I could spend a week or so of solid typing of my negative feelings and setbacks but I won't. Not yet...

Anyway, moving swiftly to the present day. It's June 30th. It's 6:00 in the morning and as usual, I haven't slept. My preordered copy of the PS4 remastered version of the Crash Bandicoot trilogy (a hugely important part of my youth, and in the present day) is set to arrive in a few hours. I'm typing on the laptop I bought to make my five days receiving Lemrada next month more palatable. I now own a trumpet and an acoustic guitar and have about 1/4 of a drum kit set up. I'm somewhat motivated to get back into music; writing, recording, playing and the time away from it all has changed the way I think of myself as a musician. I'm actually getting excited about music again. Jessica and I are still together and every day she gives me inspiration to keep living, and for her and our future together I hold on until the end of the day each day. Sometimes barely but I haven't failed at that yet so that's something to take pride in. Time will tell where else the river will take me; piss knows I had no idea it would take me where I've already been so I've stopped expecting the scenic route by now. Life still feels like a bit like being on an unfamiliar planet, and one I'm not quite fully welcome on at times, but in amongst my fears for the future, both near and far, there's a glimmer of hope.