put that thing away

Over the past couple of weeks I've been swimming a couple of times - for the first time since long before my relapse started in mid-June. Although I haven't managed to do as many lengths as I had been doing previously, it has been a good start.

Because I was a wee bit nervous my Dad came along on the first occasion. We went to the pool which is just down the road from our house, not the one we go to with Little Ms D which has unisex changing rooms.

The one which is closest to me very much DOES NOT. Why does this matter? Well.

By way of illustration, when we arrived last week we were greeted with the following sight.

A fully naked old man, with his back to us, bending over to dry his lower legs, balls SWINGING LOW, his third eye practically winking at us.

The level of nudity is something I've noticed previously at this particular swimming pool and it doesn't get any less weird, no matter how often I return.

Illustration based on the author's sworn testimony by my brother

I'm no prude but I can't see that I will ever be the sort of person who is that... I dunno. Blasé? Regardless of who you are, the male form is a ridiculous thing, all swinging danglers and proud salutations.

Even after I'd warned him, my Dad was silently mouthing, "What's going on?!" And that was before we walked further into the changing room to see a (clothed) man talking to a completely stark bollock naked man.

A couple of days afterwards I mentioned the fact that I'd been swimming to my community physio. After having a laugh about the old lads and their OLD LADS, I mumbled something apologetic about the low number of lengths I managed. She pointed out that a few weeks previously I'd been pretty much immobile. So I should maybe go a little bit easier on myself.

learn from my PIP mistakes!

AKA Everybody Has Been Burned Before 

Although it has been a while since I published anything I've got loads of fragments on my phone, bits of wrting for here and / or multiplesclerosis.net. Blogs about sleep and the lack thereof. The soothing sounds of BBC Radio 4 when all you have to do is sit around and try to slowly get better. But then real life gets in the way and the moment is gone.

To be honest it has been a bit of an emotional rollercoaster (to put it mildly) and some of what I've written seemed a bit facetious in retrospect. But no harm no foul.

In brief:

1. I've had a few visits from a community Occupational Therapist and it has been brilliant to get a bit of movement going. This relapse and my recovery has been a harder slog than previously but every day in every way, yaddah- yaddah-yaddah.
2. I've started therapy, which has been great. The hardest thing about this relapse has been the way it has affected the family (Mrs D, in particular) so to have a space where I can just sound off without having to filter my thoughts or worry about how the other person will take it is immensely freeing.
3. I got the results from my JC Virus blood test and it came back negative, so I'll soon be stopping taking Tecfidera. After a period of "flushing out" the last doses, I'll be straight onto Tysabri - as long as my MRI doesn't come back with any surprises, I guess. The MRI itself was uneventful enough, although it was as much of a hardcore perspective-provider as my last one. When I came out this time my mum was talking to lady who I assumed was pregnant and was waiting for a loved one. It turned out that she was having an MRI to see if the huge tumour in what was left of her bowel (she'd already had half removed) was operable or not. Like a great man once said, too much fcuking perspective.

So that's it. Apart from...

Despite having been on Disability Living Allowance for the best part of a decade due to having a CHRONIC DISABLING HEALTH CONDITION, plus the fact that I was knee-deep in relapse when I was assessed, my application for PIP was turned down.

We found this out at the end of July and we're now over our first reaction (which was basically apoplectic rage leading to depression).

Here are a few things we've learnt:

• The assessment is only based on the information you include on your form. So in our case all the stuff which has come on since then - relapse, adaptations around the house, physio and CBT therapy, worsening mobility - can't be included retrospectively (FYI my application was submitted in January, the assessment was in July). And if I'd got in touch to let them know about the developments, the DWP would probably have asked me to submit a new claim. So the system is broken at best, at worst very much rigged against disabled people - especially people with an unpredictable disease pathway.
• We've been talking to a family friend who works at our local Unemployed Workers Centre - see https://www.tuc.org.uk/sites/default/files/UWCDirectory.pdf to find your nearest option (or contact Citizens Advice, MS Society, MS Nurses, anyone!). Ours has a lot of experience in overturning PIP decisions on appeal but he said that, based on the form I submitted, there was no reason I should have been turned down. So we've formally requested they reconsider their decision based on a number of points in their assesment which were incorrectly scored. 
• If this fails we'll consider taking it to an independent tribunal with advice from the UWC. Or I'll reapply, including all of the recent developments. 

A final word of caution based on our experiences. If you're at the start of your PIP application process, even if you've been receiving DLA for a number of years (as I had), get some help in filling out your form (see the list above as a starter).

Although he said that I should have been successful, our advisor could see that the way I'd worded some of my application might've been open to misinterpretation.

As it seems to have been.

what is not but could be if

As far I'm concerned, every relapse seems to have its own soundtrack. My 2012 relapse coincided with Little Ms D's first birthday which was emotionally hard for me to take. Because of this, I probably should have avoided coming across the music of Sharon Van Etten, whose first three albums are devastatingly raw and emotional.

Her voice - simultaneously tremulous and defiant, powerful and wounded - got me through the worst of my 2012 relapse, even if at times listening to her albums was the kind of bad idea which you can't help carrying through.

The sharp-eyed amongst you will have noticed that the title of this post comes from yet another Silver Jews song, and they are the band that I've been reaching for most often this time 'round.

Their music is a kind-of shambling, lo-fi type of country - but the skewed romanticism in the lyrics, delivered by the ruined voice of David Berman, are what does it for me, described on their Genius page as offering "an alternative, sometimes inebriated take on the traditional country themes of lost women, whiskey, Nashville, and disillusionment".

Silver Jews

One of my most oft-quoted lyrics (just ask Mrs D) is:

When I go downtown
I always wear a corduroy suit
'Cause it's made of a hundred gutters
That the rain can run right through.
But a lonely man can't make a move
If he can't even bring himself to choose
Between a pair of black and a pair of brown shoes
- Black And Brown Blues

Last week I went back to the QMC for a blood test to see if I have the JC Virus (mentioned last time because of the effect it can have if you take Tysabri).

Is it weird that I'm impressed by the fact that my blood had to be sent off to Denmark to be tested? Super-fancy!

This visit gave me an opportunity to ask the lovely Kate (MS Nurse) a few more questions because it had all got a bit noisy in my head and after reading that MS Trust leaflet I didn't really fancy taking any of the suggested new drugs.

She pointed out that the risk of developing progressive multifocal leukoencephalopathy (PML - or as Mrs D likes to point out, "piss myself laughing") is only 1 in 100,000 if the test comes back negative. If it comes back positive it "only" goes up to 100 in 100,000. And regardless, the MS team monitor people closely and continuously if they go down that route.

She said that Tysabri woud be her recommendation as Alemtuzumab can lead to a higher risk of developing another autoimmune disease - I know that this can be a common issue with any autoimmune disease like MS but why add to the risk?

So even though I can usually find myself unable to choose between my options*, if my bloods come back OK I'll likely be going down the Tysabri route.

* just like like the narrator in the song quoted above - it's weird how things turn out, right?!

I have another MRI next week. Which will be the third week on the trot that I will have visited the QMC (and the fifth time in seven weeks!).

another round of DMT pick n mix

genuinely helpful diagram that the brilliant MS Nurse drew for us yesterday

Yesterday I went to see the team at the QMC for a follow-up from the recent MOAR (Mother Of All Relapses) and things have certainly changed in the realm of Disease Modifying Therapies.

Most noticeably there seems to be a "failure will not be tolerated" attitude to treatments. Which is why after my first relapse in 5 years (and first in the almost 2 years since I started taking Tecfidera), the Neurologist and MS Nurses are keen to discuss changing medication, and a step-up from First Line treatments to more aggressively effective Second Line options.

So we're now back in the realm of weighing up drugs (or, more likely, sticking a wet finger in the air to see which way the wind blows) - the key contenders are:

Finngolimod (aka Gilenya) - one pill a day but the promised reduction in relapse rate means there's not a huge amount to choose between this and Tecfidera - it's still classed as First Line, and - like I've said - the various teams would like to see a move to something a bit more effective.

Tysabri (aka Natalizumab) - an intravenous infusion once every four weeks. The MS Nurse described this as acting like velcro on the immune cells in the blood stream, preventing them from passing through blood vessel walls and into the central nervous system where nerve damage occurs.

As it says in the MS Trust publication on Disease Modifying Drugs (links opens as a PDF):

Tysabri is a highly effective (category 2.0) DMD; it reduces the number of relapses by about two thirds (70%).

Sounds great, yeah? But hang on...

Treatment with Tysabri may increase the risk of progressive multifocal leukoencephalopathy (PML), an uncommon brain infection that can lead to severe disability or even death. PML is caused by a mutation of the JC virus, a common infection completely unrelated to MS. 

So there's that...

And finally Alemtuzumab (aka Lemtrada aka Campath) - taken as two five-day intravenous infusions, 12 months apart. Again, this is a highly effective category 2 DMD, reducing the number of relapses by around 70%.

Because Alemtuzumab suppresses the immune system, people are more vulnerable to infections, and there's the usual headaches and nausea. But surely that's not all, right?

Three serious side effects have been reported from clinical trials:

• overactive or underactive thyroid gland leading to thyroid disorders, affecting 360 in 1000 people
• 
idiopathic thrombocytopenic purpura (ITP), a serious disorder which prevents blood from clotting, affecting 10 in 1000 people 
• 
kidney problems, affecting 3 in 1000 people 
These side effects are potentially serious but they are treatable if caught early enough. People taking Lemtrada will be informed of the early signs and symptoms of these side effects. 


When I was talking to the MS Nurse, she implied that Alemtuzumab had more risks associated with it (certainly more than the MS Trust publication implies), mostly because of how intense it is, effectively wiping out lymphocytes - more reading will have to be done.

So this is where we are! Next week I'm going back to the QMC for a blood test to see if I have the JC Virus and am therefore more or less likely to develop PML.

On first glance, I was leaning more towards Tysabri but now I'm not so sure.

suffering jukebox

I haven't had the energy to update since the recent flurry of activity. Even now, a week and a half after my last dose of steroids, I haven't been able to sleep through the night. It seems to be that I go straight to sleep, then an hour later I need to go to the bathroom. Then I sleep for another 3-4 hours before I need to get up again. It's very frustrating.

And this just in from our TMI desk - I'm worried that I might be in danger of developing a Urinary Tract Infection. As Fergie would have it, Glamorous.

Which is why I started writing this post this morning in the sun, drinking as much water as possible.

More positively, the adaptations we organised around the house were fitted a couple of days ago.

• An extra banister on our stairs
• Rails on a wall on the landing
• Grab bars and a (non-permanent) seat in the shower, with a further grab bar by the toilet
• Something under the mattress which gives me a metal bar to hold onto when I get in and out of the bed (it could also prevent me from falling out!)
• A raised toilet seat

We also had an extra frame for the downstairs loo which we discovered too late doesn't allow us to close the door. So that's going to be swapped for another raised seat.

All of these things have made a tremendous difference - I was able to easily get around the whole house yesterday. Maybe that's why I'm so tired today? The old steroid side-effect of feeling too good and pushing yourself too far too soon?

The OT who came over last week is also arranging for me to have some physio at home, which will be good. She's also arranged with the Neurology Outpatients Therapy Services (where I normally go for physio) for an appointment with a Speech and Language Therapist - I've had a couple of instances where I've almost choked on food and drink, and this is apparently another potential problem with MS. It really is the gift that keeps on giving, isn't it?!

Mentally I feel I'm doing OK, despite being a bit snappy. But because my mobility is still a bit dodgy I've postponed my CBT until the week after next.

Next week I've got a neuro appointment when I'll give him some feedback about the two different steroid doses (5-days good, 3-days SO bad). And in a couple of weeks I have another MRI, and depending on the outcome we might be looking at trying different medication.

The worst-case scenario hanging over my head? A rebadging from Relapsing and Remitting MS to Secondary Progressive.

I know there's no point in worrying about the future, and this is how most people's MS progresses. But still.

-

Like another recent blog post, the title for this one came from a song by Silver Jews, a favourite band of mine. Enjoy.

what a week

On Tuesday of this week I finally returned home. The thought totally stressed me out in advance to be honest but since being home I've felt much better. I really missed being here, even though I was super comfy at my parents' house.

I'm slowly getting stronger by the day - I think stepping away from the incessant bloodletting of GoT is helping. But it has been pretty full-on since I've been back:

• Wednesday we had a visit from a Community Occupational Therapist who asked us loads of questions, watched we move around the house and made loads of suggestions about adaptations. Our Landlord is a family friend so getting permission wasn't a massive issue but these will be fitted in the next week or so - mostly rails and grab bars in various places around the house.
• Thursday we had a Disabled parking bay painted outside the house - we applied in October of last year and the actual job only took five minutes to do. This is huge for us (not that I'm driving anywhere at the moment).
• Earlier today I had my PIP Assessment - it was so bizarre, going through that form again, talking about my medical history AGAIN. Truth be told, things have changed a lot since I submitted my application in January - my mobility is a lot worse than it was. Could I have done without the stress? Probably. Was this week the best of all times to display the issues I'm having? Very possibly. Now we wait between 4-6 weeks to hear back.

On PIP, I called CAPITA (the assessor) earlier this week to let them know that Mrs D was going to be in attendance and also to see making an audio about recording of the assessment (after reading this on the Citizens Advice Bureau website). They said it wouldn't be possible unless we were able to provide two identical CDs or Tapes on the day. I explained that I was hoping to be able to just record it on my phone for reference but was told that wouldn't be allowed because "people can have all kinds of sound editing software on their phones".

I said what if I record it as a sound file, press the stop button in front of the assessor and then email the file immediately without pressing anything else. Apparently this wouldn't be allowed either.

Isn't that nuts? Especially when most people's first thoughts will have been to record the audio on their phone.

PLUS they called an hour and a half before our scheduled appointment to say they'd had a "cancellation" and could they come round in 20 minutes. And I'm paranoid at the best of times.

steroids days 4 & 5: lazy days

last steroid

I've been spending the last couple of days just relaxing - had a lovely day yesterday hanging out in the garden and watching films with Mrs and Little Ms D. We've continued the GoT binge-watch (up to Season 3 now!) - very watchable nonsense.

Bit of a crappy night's sleep last night so I've been zoning in and out for most of the day and actually had a nap this afternoon. Anyone who knows me will know that this never happens EVER.

Bit nervous about what tomorrow will bring without steroids. To be completely honest, of the two courses I've had to combat this relapse, the positive effects have been way more noticeable on the lower-dose, longer-course version.

I think the 1,000mg per day for three days is a bit of an 'experiment' the the Top Prof is keen on. I can see the sense - it delivers the same amount as you'd get through three days of IV bags but you don't have to keep coming into clinic. Personally, I think having to digest that many tablets did NOT agree with me. It's quite telling that the Prof admitted that every time he's sent a patient down to the pharmacy with his hardcore prescription, the chemist will always call him to double-check that it was actually correct. Hmmmm. We shall see.

I've been mostly keeping up with my physio exercises and reintroducing dairy into my diet with a vengeance. I'm still a member of the OMS Lifestyle Support Facebook group and earlier today one of the members posted the following video from NutritionFacts.org.

It's pretty interesting (much like GoT I let a lot of it wash it over me) but it points out that moving to a plant-based diet can drastically reduce your white blood cell count - which Tecfidera does anyway.

No more experiments!

steroids days 2 & 3: night-time stress, muted positivity and a PIP-related question

As previously stated, on Day 2 I woke up fine after a good chunk of sleep. Otherwise nothing much to report apart from I had a visit from Mrs and Little Ms D which was absolutely lovely. They were pleased with how well I was doing. Truth be told my legs didn't feel quite so switched on - nowhere near as bad as they were pre-steroids, but not quite as non-shuffling. Might just have been our perception? Or even just the flappy slippers I was wearing?

Sleep was hard to come by because STEROIDS but also because I had a few thoughts rattling my noggin (which I couldn't do a damn thing about at 4am):

• My parents had to cancel a holiday to look after me this week - they only had to pay for flights but still. They rescheduled them to this coming Monday which is the day after I finish this round of steroids. When I finished last week's heavy-duty steroids that obviously led to a rapid two-day decline and immobility. So obviously I was freaking out about that. Until I spoke to them and they said that of course they weren't going (see 4am above)
• My wife has had to take the last week off work due to stress (OBVIOUSLY) so I'm worried about her. Her mum and dad live really close (like, across the road) and I think it did her good to see me up and about yesterday. But still - I worry.
• I have a PIP assessment (at home) next week today. Yes, this could be - ironically - the perfect time to have this visit and Mrs D will be in attendance too. But just how much stress can we take? Furthermore - and here's the question for YOU - how should we prepare?

I've already done a bit of light exercise today - just a walk around the garden as it's the first day that it hasn't been raining (I always hated Thomas Hardy's use of Pathetic Fallacy, so this has been particularly annoying). I'm keeping on with regular physio exercises as I arranged yesterday to have an open appointment until we have a better idea of what things will look like next week). The wider plan is to spend a bit less time being totally static (although my dad and I have come late to the party and are binge-watching Game of Thrones).

Here's some good news:

• After nine months of applying, chasing, mis-communication and MORE chasing, earlier today Mrs D sent me pictures of markings for a disabled parking bay outside our house. The street we live on is busy (plus points: I learnt to be a Parallel Parking JEDI while I was wooing Mrs D) but is also the closest street to the City Centre which doesn't have a residents-only parking scheme. Leaving the house can be incredibly frustrating. People will do circuits in order to find a space and then park really, REALLY badly - one car (owned by someone who walks into town to work or shop) taking up a space which could easily house three is a regular thing. This is going to really help.
• I've spent a bit of time on the phone to my GP about getting the Community Occupational Therapy team out to do an emergency assessment of our house and make some recommendations about possible adaptations - something which the MS Nurse spoke to us about on Tuesday. I've just got off the phone to them, they're coming out next week, which is great. Hopefully I'll be in a position to not need them soon but at least they'll be in place for the (wearyingly inevitable) next time.
• As I mentioned in a comment to the last blog, I start therapy in a week or so which will be good for me.

As well as GOT (Grade-A NONSENSE but entertaining enough) I've been listening to the S-Town podcast - something I've had lined up for ages but still, late to the party again. It's bloody brilliant and incredibly moving - HIGHLY RECOMMENDED.

If you've read this far, don't forget to give any advice about preparing for our PIP assessment! Thanks.

steroids day 1: the drugs do (appear to be) work(ing)

thank you, friend

After a fairly dispiriting night (business as usual - totally immobile, unable to get out of bed without assistance, plus a couple of 'accidents' - nice), I woke up at my parents' house to find that not only could I still not get out of bed, but i was also unable to hold a drink or feed myself. My dad had to feed me breakfast and count all the bits of medication I would be taking, including my first day of this second round of steroids.

As I took the first one, I remember focusing all my strength on thinking "This WILL work".

I just chilled out in my room for about an hour (I say chilled out, I watched an episode of 24). And then I stood up and walked across to the bathroom.

As I type this (and the very idea of that would have been laughable yesterday), it sounds ridiculous. But I swear it happened like that, it was that rapid.

For the rest of the day, things continued to improve, I was able to look after myself without assistance and also do some regular physio exercises. Perhaps most surprisingly, after settling in bed with a few podcasts to listen to as the steroids put the kibosh on any idea of sleep, I nodded off within five minutes. I woke up earlier than normal but it was a good chunk of kip. And my legs and hands were still working when I got out of bed.

I'm not naturally the most positive of people (see blog title and ask my wife), but one thing I got from reading George Jelinek's Overcoming Multiple Sclerosis book was a section about the importance of Hope. Unfortunately I don't have the book with me otherwise I'd quote a bit of it but y'know those people that we've all seen at MS events who play Competitive Disability Bingo? Or people who talk down the achievements of people with MS who run marathons (Hi Swisslet) or climb mountains because they've ONLY got Relapsing Remitting MS, and anyway I've had it longer and you don't know how bad I've got it? I think they've given up hope.

And I think it has to be a conscious decision to abandon hope. I'm not saying this is going to help full-time wheelchair users rise up and win Ninja Warrior (or whatever) and it has to start with a good dose of Stoicism and an acceptance of what you're dealing with. But if the only thing you can hope for is that this is as good as it gets then that might be start.

I'm hoping that these steroids will help me get back to how I was before this relapse. And after that I hope to carry on getting a bit more control of my body and improve my fitness (I'm neither a marathon runner nor a mountain climber).

I had no idea that this blog post was going to end up so sappy when I started writing it, and I hope it doesn't come across as patronising or insulting to people who are dealing with worse situations than mine.

FULL DISCLOSURE: things were so bad yesterday morning that I was genuinely thinking of the best method to end it all. Sorry but it's true. My Dad displayed our family brand of gallows humour by saying that I wouldn't be able to hold a knife steady, and anyway I'm taking so many tablets that it wouldn't make a difference.

But I do think there must be something in the idea that having some kind of hope in medication and treatment - something with a basis which is tangible, scientific, provable - then it will be more likely to have a positive outcome. It's like when I was doing CBT all those years ago - a psychologist friend said that if people go into CBT expecting it not work for them, then it more than likely won't. I went expecting it to help and it did.

All I did yesterday was take a dose of steroids believing they would work. And they are.

FOOTNOTE
When we spoke to the Neuro on Tuesday, we talked about the OMS diet and asked him his opinion. A vegetarian, he said that his advice would always be to eat a balanced diet. He would also like to view the evidence for any diet, as he had seen patients who had gone down this kind of route while also spurning drugs. "And they always end up back here eventually."

So although I'll take other parts of the lifestyle - meditation (270 days unbroken), Vitamin D and Flaxseed oil supplements, Hope - I'm going pescetarian from now on. Less of a mental strain for everyone involved. If we're out and the Vegan option looks good I'll probably choose that over anything else. And I genuinely love some of the things I've been eating while following the diet.

But at least I'm not a Reducetarian - for fcuk's sake, this is an actual thing and we're surely in the End Days.

mother of all relapses: the return

MS has to be one of the worst conditions to live with - for the person who doesn't have the condition, that is.

Of course it's unpredictable for us - but when we wake up, take stock and learn what we're dealing with that day, at least then we have one job: deal with it. My wife works, looks after our home, organises pretty much everything for our daughter, and she has to be a helpless onlooker to whatever situation I'm in that day.

I finished my course of steroids on Friday but the next two days were just weird. One day I felt like I was starting to get on top of things, the next I looked green and was more or less immobile.

Sleep was hard to come by, but Sunday was the worst. Overactive bladder meant I had to get out of bed at least 6 times in the night. Plus I also had the latest in an evolving series of trips and falls, going arse over tit into a rotating fan, which added to my ever-growing collection of lurid bruises. What larks. At least I didn't wake anyone up this time.

Monday I spent lounging around watching TV and just trying to get some rest. I also ate some food that I actually wanted and which didn't taste completely crap (only baked beans on toast but it hit the spot). So I was feeling pretty positive (if utterly banjaxed) when I turned in that night.

Unfortunately after a good chunk of sleep, I tried to get out of bed. I swung my legs over the side and then couldn't raise my upper body off the bed. After about 20 minutes of grunting and straining (yes, and swearing) I got myself onto the floor and could go no further.

We called my father-in-law who came over and was able to bear some of my weight in order to get me to the bathroom. Later I called the MS Nurses (again) and they asked me to come and see them (again). At that point they were talking about me being admitted for a full review.

When we got there, the neuro (following some physical tests and a conversation with the top prof we saw last week) decided that this was more likely to be a continuation of the relapse. Not necessarily evidence of progression (although more tests and a new MRI will be needed once I've hopefully got over this relapse).

As I responded well to them in the past, they've put me on a further course of steroids, spread over five days just like in Relapse 2012. Yeah, I know.

We also talked to the lead MS Nurse about the number of different drugs I'm taking. Talking about Fampyra, she said that a lot of people's experience with it shows a dramatic improvement followed by a levelling and eventual dropping off. Which certainly chimes with the Neuro who said that it's clearly not working currently and I should stop taking them, at least for a while.

To give Mrs. D a break, I'll be staying at my parents' house, at least while the disruption of another round of steroids runs its course. The stress of me being in the house was making her ill - so at least this way she should get more of a stress-free night's sleep.

My parents? Maybe less so.

the devil will find work for idle hands to do

Final day of steroids today - taking them has got a little easier, especially since I stopped trying to take more than one at once. No real side-effects - aside from mega dry-mouth, an inability to drink a cup of tea or coffee while they're still warm (because gross), and the inevitable difficulty falling asleep.

On the first day, I managed the grand total of one hour. Last night I set myself up for the long haul with a couple of podcasts, got all comfy - and promptly fell asleep (don't worry, I eventually woke up stupid early so no harm done).

This particular relapse has really affected our whole family - in a way I've been the lucky one, only having to concern myself with getting some rest. It turns out that Mrs. D is - unbeknownst to me - unable to to sleep before I come to bed. We're sleeping in separate beds while I'm getting the 'roids out of my system, but she can't relax until I'm set up in bed. It's understandable, considering the nocturnal nonsense that we were dealing with at the weekend.

My parents and in-laws are just short of holding an intervention with regards to my pesco-vegan OMS diet. Their concerns are two-fold:

• I'm apparently losing a lot of weight (I've not noticed it myself and my weight has always fluctuated - I personally think I could stand to lose a bit)
• It's too much strain on Mrs. D - especially when I'm having a relapse. I'm not much of a chef so all I'm doing is giving her something else to stress about.

I'm going to give it some thought - it is a pain in the arse and I'm not even doing it completely strictly. There are all kinds of wacky rulings about the kinds of oils you're meant to use, permitted fat content and types, plus there are potentially three different meals which need to be made each day - carnivore for The Child, vegetarian for Mrs D, and annoying fuss-pot for me. Plus pre-prepared vegan food is stupidly expensive and the labelling for "Free From" items is so totally non-standardised as to make you scream.

But I am conflicted - I feel mentally clearer since I went down this path (no matter how half-arsedly I've been doing it) and this particular relapse has felt different to my previous attacks. I know the Neurologist kind-of fudged the question of whether he wanted to call this a relapse or not, but if it IS a relapse, it is progressing at a more leisurely pace than those in the past.

Now there are a number of factors which have changed since 2012 -

1. I've changed medication to Tecfidera 
2. I no longer have the stress of being at work (and the relapse-related guilt that I should be trying to work from home and/or getting back to work as quickly as possible), although I do have the stress of looking for work, applying for benefits, etc. etc.
3. On top of all that I've been trying to adopt the OMS lifestyle - not just the diet, but more regular exercise, daily meditation, and Omega 3 and Vitamin D3 supplements.

Who's to say what has made the difference? It could be any, all, or none of the above. Yet again, life with MS is nothing if not a crap shoot. You pays your money, you crosses your fingers, you takes your chances.

strange victory, strange defeat

So it's a relapse.

Yesterday we went to the hospital - weirdly enough, I didn't actually see either the MS Nurse I spoke to the previous day or Dr Gram's Travelling Psychedelic Strawberry Charabanc (OK, Relapse Clinic - boring).

We ended up talking with the head honcho of the MS team in Nottingham - super fancy! I didn't go into it hoping for a relapse - no one in their right mind would go in wishing for that. But neither did I want to be fobbed off with, "Go home and sleep it off". This is what I got last time and it led to a really prolonged period of illness.

Even though as I was describing the situation I had an internal monologue saying that I was underselling it, he agreed it was a relapse. Or at least as far as he could tell. And even if it wasn't, a course of steroids would help to get me back on [some kind of / any kind of] track.

For convenience sake I went for the oral steroids which, if memory serves, I described as sucking balls last time 'round. On that occasion the dose was five 100mg Methylprednisolone tablets over five days.

This time I chose (on the Professor's advice) to take ten 100mg tablets per day over three days - which delivers the same dosage as three days of IV steroids.

And various members of my family were bothered by the amount of tablets I was taking before.

Earlier today I took my Omeprazole tablet [to line my stomach] followed by my first dose of steroids. And let me tell you, it wasn't pretty. I was genuinely concerned that I wouldn't be able to keep them down! I knew that they were going to taste gross but this was off-the-scale EVIL.

The only bright spot is the fact that I won't be taking them for a long period of time. So, just three days of retching and shitty taste as opposed to five.

I know there are worse things in life. And I really need to strap a pair on [again].

But still…

SO

GROSS

heatstroke or relapse?

AKA the world's crappiest coin toss

Despite containing my birthday (and I really did have a great birthday), the last week has been pretty shitty. A series of nights where sleep has been hard to come by has combined with the heat to severely affect my mobility. Even going across the road is a major operation.

I've also had some pretty bad falls (even falling out of bed - hello, nicely-developing bruise on my left hip) but Sunday night was the icing on the cake. Trying to get to the toilet, legs not working at all, collapsing hard into a dressing table, my wife struggling to get me upright. The one bright spark is that The Child amazingly slept through it all!

I called the MS Nurses first thing and have an appointment at a Relapse clinic tomorrow. It might be the heat but there has been a slow increase in disability recently, despite physio and everything I've been doing. It's been five years since my last relapse so I've sort of forgotten how things usually play out! However, I'm kind of hoping for some steroids to clear things up. I know it's not something to wish for lightly but it's getting a bit ridiculous.

When I eventually got back into bed last night I wrote (in my head) the angriest, most foul mouthed, most self-pitying blog post ever, so I'm thankful that good sense and a bad memory have prevailed - plus I didn't have my phone to hand.

BRIGHT SPOT: Me and the divine Mrs. D have a shared calendar on our phones, and the listing for my appointment tomorrow is for Dr Gran's Relapse Clinic, which sounded to her like some kind of travelling third division psychedelic band.