The Saga Continues - D-Day (post 5)

Date: June 2010

Age: 20

Not long after the MRI, I have my follow-up appointment with the neurologist, who tells me that, as he suspected, my lesion-load has increased, and he confirms the diagnosis of MS. Cue several months of letters between my neurologist and another neurologist (who apparently is the one who deals with Disease Modifying Therapy, or DMT), arguing over whether I am eligible for going onto DMT, and which neurologist my care should come under. Eventually neurologist number one convinces neurologist number two that yes, I should have DMT, and that yes, he should take over my care.

By June the process of getting me put onto DMT is well under way. I even get given the choice of which drug I try! All of the available options involve me giving myself injections, with varying regularity. There are beta-interferons, which can make you feel fluey, but they are less regular - 2-3 times a week; an intra-muscular jab which frankly just sounds scary (especially considering that I saw Mum doing this jab once, and she nicked a blood vessel in her leg. Blood. Everywhere...); or Copaxone, which is an immunomodulator. I decide to go for the Copaxone, because it's a daily injection, and I think this'll be easier for me to remember than a 3x or once weekly jab. I meet my MS Nurse, who shows me how to administer my injection on a stress ball, and then eventually on myself.

Going Round in Circles

 I think the first thing to note here is that I am not, nor have I ever been, good at sport of any description. Ever. It's not like I never tried to be good at sport, I just never was. Having said that, I've always enjoyed exercise. I like walking, I always enjoy going to the gym, and I like swimming (apart from the bit where it involves water...). I'm just not very good at it.

So, for some reason I have decided to inflict the most awful torture on myself. I've decided I want to run the London Marathon.

There are several reasons for this stupid decision, the main being 'just coz'; I want to prove (mostly to myself) that I can do anything, if only I put my mind to it. I also want to prove, not to anyone in particular, that having MS isn't the death sentence that so many people seem to think it is. That you can still achieve amazing things. And lastly because improved fitness has been proven time and again to have such a broad range of benefits to people with MS (not least the keeping fit bit). There's more information here, here, and here about the studies that have been done in this vein.

This only leaves me with one mammoth task: training. How on earth do I go from being a size 18, almost completely sedentary student, to being fit enough to run a marathon?

So far, I have started attending spin classes at the uni gym, and sometimes walk to work (3 miles each way). Spin classes must be the first time I have ever found exercise relaxing. Which is weird. Especially when you consider how fast-paced and physically demanding spin actually is. In any case, I aim to go spinning twice a week. Walking to work happened every day for a week and a bit, although that stopped mid last week, after I went to spin in the evening after having walked to and from work earlier in the day, and I could barely do anything like what I usually manage. I'm still working on how I can incorporate both into my week without falling flat on my face.

Yet, despite all of this I'm still tipping the scales as obese. Which is frustrating. So in the fashion of so many other bloggers all over the place, I've decided that I'll use my blog as a way of documenting my progress, and hopefully inspiring me to do better. Come payday I'll be starting my own variation of the paleo diet, based loosely on the Best Bet Diet. Which means no gluten, no dairy and no legumes. I get the feeling that this is going to be the most difficult part of what I'm doing, so as with the exercise I'll start a little bit at a time. First to go will be dairy (I'll keep goat's and sheep's alternatives in to start with, and see how I get on), then legumes, then gluten. I'll have to start doing a regular post, so let's say weekly.

Wish me luck!

Cross Porpoises

Ok, so the bff and I have birthdays 5 days apart (she tries to pretend she doesn't know this, mind...), so we were discussing the possibility of doing a joint birthday do this time. We eventually decided a BBQ and games at a local beauty spot would be a good plan.

Part way through our discussions, she asked me if I was still walking - of course, I giggled and facetiously told her that I'd actually decided to try hovering a few feet off the ground as a less weight-bearing alternative, and then continued to tell her that yes, I did still have legs, and yes, they did still work.

In all honesty, I was a little taken aback by the question, and thought that, whilst it was nice that she was concerned for me, she hadn't really shown that concern in the most tactful manner (not that she's usually tactful, but that's another matter).

As the conversation progressed it became increasingly apparent that what she was actually referring to was a much earlier conversation we'd had (see my last-but-one post for more details on that one) about going for an evening walk each day.

I wasn't laughing so much at the misunderstanding itself, but at my own stupidity for assuming that she'd thought I had become incapacitated since the last time we saw each other - which, let's be honest, wasn't all that long ago. Perhaps there's a lesson in here somewhere for me?

These people can't seriously believe this shit...

So, some of you will probably know that Jack Osbourne was recently diagnosed with MS. Woo, big news, lots of media coverage of MS stuff, free advertising of our cause!

Yeah, and lots and lots of people who don't know what the hell they're talking about, trying to pretend that they know what they're talking about. Gah!

Apparently, according to fundamentalist number 1, if Osbourne turns to God, he will be cured. This is probably the single most insulting thing I have seen all year. Not least because I know several Christians who have MS, who - funnily enough - haven't been cured by the miraculous healing powers of God Almighty. I wonder if it's one of those new customer only deals? Maybe that's why mum hasn't miraculously stopped having MS, because she was ALREADY A CUSTOMER before her diagnosis. Soz, mum. Looks like the early bird misses the worm in this case... Hey, maybe we should suggest to the big G that he puts a bogof deal on. Maybe for a week at Christmas.

I really shouldn't be surprised by this level of ignorance any more, but it still amazes me how people can honestly go through their whole life thinking that this stuff is actually genuinely true. Oh well, that goes in the sin bin along with the 'hey, lets round up all the 'gays and homosexuals and lesbians' (because they are all of course distinct entities in their own right) 'then build a fence round them and let them die out - because they can't reproduce'. I won't go into how stupid this one is, I really cba right now.

Jelly Wobbles

So. Today my legs decide that they want a career change; they don't want to be legs any more, they'd rather be jelly towers. Which is great for them, but they could have warned me in advance that they were going to be practising their wobbling skills while I was walking across campus this morning... 

They seem to be doing a lot of this recently.The weekend before Easter I went shopping with the boyf and his parents. I was walking back to the car with them, happily minding my own business, thinking of the new jeans I'd just bought myself, when all of a sudden I'm sitting on the floor in a puddle of shopping bags, thinking, 'how on earth did I end up here?' 

It's not just my legs that have been a bit 'wobbly' of late - I don't want this blog to turn into one of those ranty pages, so I won't go into all the gory details, but suffice it to say that over the past six months or so, I've been metaphorically shadow boxing, and the shadow's been winning more than I'd like to admit...

Anyway, recently I've been having a few MS-related problems, mostly with neuropathic pain, fatigue-like symptoms (I don't want to say fatigue outright, in case it isn't), and a sort of minor aphasia, and it's been getting me a little bit down-in-the-dumps, which obviously doesn't help with the whole degree thing.

I will admit that I've been neglecting to clean all the things too...This lethargy thing has more downsides than you first imagine. I've put on about 3 stone and 2 dress sizes in about a year and a half, and feeling constantly tired and in pain doesn't really inspire you to go and do the rounds of the gym - especially when your clever university spend millions on a new sports centre, but then make the gym about a third of the size they need it to be... Queueing for the weights machines when your legs have decided on a career change is never fun

 So anyway, getting slowly to the point, the best friend very kindly gave me a well deserved kick up the backside, and reminded me that, in the words of Terry Pratchet, I 'don't have MS, MS has [me]', and that I should make it rue the day it got me! She also very kindly suggested that maybe I should try and ease myself back into doing regular exercise, since we're regularly told that the stuff released from exercise cancels out pain, and makes you feel better. At least I can rely on the bff to remind me what's what from time to time, even if most of it comes out as jibberish at the time...

Sleep

Sleep... it's something most people take for granted. For me, it's a living nightmare.

Well, I say that; sometimes, it's a living nightmare, other times I just can't seem to get enough of it. Which is just as annoying.

Imagine this: it is 10pm, you are shattered, you have just taken your nightime medicaton, which makes you even sleepier. But you can't sleep.

Now it's 11am, and you're just waking up after having finally fallen asleep around 11-12ish. You had one hundred and one things to do in the morning, but now you can't do any of them, because you slept through all 3 of your incredibly noisy, annoying alarms. Bugger.

This is my life at the moment, and as much as most people would love to be able to sleep that long, it actually really annoys me, because I don't like being lazy. I like to be up and doing things, but all I seem to be able to do is sleep. So much for getting a job...

A Realisation

This afternoon I realised something. I'm at home for a fortnight from uni, before I move into my new house for next year. Whilst I've been home, I've been to see a lot of my family, and every single family member that I've been to see, and a substantial number of my friends (although not all), immediately after having asked me how I am, get straight on to 'how's your MS?'

It's not a bloody pet! It's not something that I take for walks every day and give treats to if it's good! It's an illness that I happen to suffer from. If I'm honest, it's not a particularly nice one, and unless someone finds a miracle cure, I will probably be encumbered with it for the rest of my life. However, it's also not something that I want to talk about every day. It doesn't (yet) affect every aspect of my life. I'd like to keep it that way for as long as possible.

If someone has a cold, you don't immediately associate them with colds every time you see them. If a friend is dyslexic or in a wheelchair, you don't remind them at every opportunity. If someone has cancer, you don't ask them all the time how their cancer is doing. Why ask me about my MS all the time?! If there's something important for you to know about it, I'll tell you, I promise! And if I don't tell you personally, I don't doubt that the family grapevine is still in perfectly good working order...

Once in a while, I would like to forget that I have such a horrible thing wrong with me. Just once, perhaps. Is that really too much to ask?

But of course I can't just turn around and say that to anybody, because I will look spoilt and ungrateful. I like that they care about me and are interested in my well being, but could they not just forget about it for once, and let me be me for a little while, without being me with an incurable illness?

A very good friend of mine told me when I saw him the other day, that he does forget sometimes that I have MS. That made me feel so happy, that there is actually one person that looks at me and doesn't just see a disease. And yet, if it's important, he remembers. If I'm struggling to walk somewhere, or having a bad day, he's quietly sympathetic. It would be nice if everyone was as forgetful as that.

I'm not really sure where I'm going with this thread, I guess I just felt like I needed to get it off my chest. Oh well. That done, I'm off to take some meds and go to bed...