Shakin' Stevens

Imagine you're sitting in your university library, studying. You look up, and you notice a girl sitting a few seats along from you. Every time she stops typing, you notice a slight tremor in her fingers, still poised to continue their work. What would you assume about her?

This is something that concerns me sometimes - today in particular. See, I am that girl. I've been working on an essay today, and every time I stop to think what to write next, I notice my fingers quaking like leaves caught in a breeze....

I'm still not entirely sure why they shake; they don't always do it. Today though, I'm pretty sure my body is punishing me for daring to walk to my orthotics appointment instead of driving. Which is annoying, because it means I can't really go to my aquafat class this evening, and I prefer the Monday one to the Wednesday one. If I did go tonight, the chances are I wouldn't feel safe driving home again.

And I was looking forward to going as well. Bummer. :(

The Energy Bug

I've discovered a new disease: it's called the Energy Bug. I'm sure other people must get it too, I've certainly spoken to a few people who get this, but I think the occasions I've had it have been rather extreme, to say the least.

It goes like this:

Most days, you feel ok, bit lethargic, but nothing that a good cup of coffee and a chat with one of your besties can't cure. Some days you feel like your bones are made of metal, and you can't get out of bed because there's a giant, invisible magnet under your mattress that is pulling you down. Then, out of the blue, you get the Energy Bug and all of a sudden, you feel like you can take on the world, and win!

'So what do you do about it?' I hear you ask. Well, I take on the world. A few weeks ago, on Friday night I had to change a wheel on my car (tyre was flat - thanks Lancaster potholes for making my alloy triangular...), then I got home and tidied up and rearranged the living room (admittedly managing to break one of my pretty light shades in the process...), finished the backlog of washing up and cleaned the kitchen.

Saturday morning I woke up at 6.30 on the sofa, wondering what on earth had happened, I could have sworn my film only just finished a minute ago and I was thinking of going to bed... After a bit more of a snooze (in bed this time), I spent the morning continuing my cleaning whirlwind, until the afternoon when I did a radio interview for Bailrigg FM, our student radio station, to promote Lancaster Nightline ready for Nightline Awareness Week. Then on Sunday, I changed the rest of the wheels on the car over to my winter wheels, so I don't have to sort out replacing my dead alloy until the spring. Note to self: don't try changing wheels when your car is parked partially over a dropped curb. Not a clever bunny...

....And then I spent the rest of the following week feeling absolutely exhausted.

That's the only problem with the Energy Bug: you take on the world and win, and then it buggers off and you're left feeling like there's magnets under the mattress and your bones are made of metal...

More recently, I had my annual MS nurse appointment, and I explained this phenomenon to her; apparently lots of people get it, and we really shouldn't take on the world when we get it, but we do anyway because we know it's one of the rare chances we get to do the things that need doing in as short a time as possible.

In other news, I finally get a response from the Gym, who were very contrite and have now given me a full refund, which I've gone and spent on membership at the hotel gym instead, because they look far nicer in there, and it looks far less busy too. Oh, and they do aquafat, which is fun :) I've had the membership for a week and I've still not had the chance to go yet, but next week I'll start fitting it in.

The physio's given me some new exercises to strengthen my core - apparently my left side is particularly wobbly at the moment, and probably doesn't help with mobility or back ache very much. They seem to be helping, which is good, and my next appointment isn't until January now, so plenty of time to get cracking with it all.

Still stuck at 14 stone, but aquafat and maybe a bit of spin thrown in for good measure should help get me back on track.

It's November already?!

I always seem to start by explaining why I've taken so long to write a new post, and this time is no exception. I've been a very busy bee, what with being ill, doing charity work and uni work and work work and actually having a social life for once, I haven't been able to find much time for doing any blogging.

A few weeks ago, I had my first physio session, which was really good. I've been given some simple exercises to help sort out the strength in my limbs, and in particular my grip, which is one of the things I find I have trouble with whenever I have a relapse. Next time, apparently, we're going to concentrate on my core strength, which sounds.... interesting!

As for checking in with marathon stuff, I've started to plateau at about 14 stone now, but hopefully once I've finished arguing with the uni Sports Centre about their ridiculous booking system for exercise classes, I'll be able to get my money back and start going to a gym where you can actually get what you paid for (and lose a bit more weight, to boot)... Anyway, enough ranting about poor customer service and lack of respect for less-abled customers.

*aaand breathe...*

So, the plan now is this:

- leave uni gym with (hopefully) full refund of membership

- join a different gym - possibly at the hotel near the gym

- start going to spin and aquafat classes again

- carry on with exercises that the physio gave me

- get fit

- run a marathon

so, not much, then? O____O

bad to worse

As if I wasn't already unlucky enough having caught a sore throat and cold last week, I manage to top it off by catching some kind of stomach bug just as I started to shake off the cold. If I'm honest, I almost wonder whether it was the vomiting that finally killed whatever bug had decided to cling to the inside of my throat and make it feel like a rusty cheese grater.

Needless to say eating *anything* went completely out of the window once that started; I don't think I ate anything for about 48 hours straight (until my housemate told me that I'd probably make myself worse by not eating), because I just didn't trust my body not to just forcibly remove it all as soon as I'd swallowed. Thankfully it didn't seem to be quite as nasty as the last time I had a one of these V&D things, which took me out for about two and a half weeks, about a year ago. I am wondering now, in the light of recent discoveries occasioned by the mega-diet, whether the doctor's advice last year might have contributed to the bug's persistence. Daily pro-biotic yoghurt drinks, he told me (even though i've always thought you were supposed to avoid dairy if you had a tummy upset). Well, as it turns out that it's quite likely that I have a dairy intolerance, maybe that's what made it last so long.

So anyway, that pretty much put paid to all of my plans for most of the week. So much for starting the term as I mean to go on, I managed to attend 1 of 3 seminars and 1 of 3 lectures. At least I'm fairly up to date with the reading so catching up shouldn't be too great a chore...

Hopefully next week will be a bit more successful. Fingers crossed, anyway. The MS seems to be playing up a little bit at the moment too, which makes things fun. I'm not entirely sure whether it's because the nortriptyline has finally worn off, or if it's because the neuro pain has got worse, but the pregabalin sure as hell isn't touching the spot right now. I'll have to remember to mention it to the quack when I go in about getting the implant (which I still need to book an appointment for). Can't wait. No periods for 3 years??? I'll sign up for that!! :D

Oh yeah, almost forgot to give my weigh-in update. 14st 2lb. *Almost* 2 stone gone!! Only another 2 1/2 to go! :)

Today, life is good

So I'm still around about 14 1/2, still slogging away with the diet. I've had a wobble or two here and there, mostly involving pasta bake and chocolate biscuits, but I'm back on the straight and narrow again now. I've discovered that the breakfast problem is easily solved by remembering to bring my own bread, and just buying bacon/egg from the Spar...

The exercise bit really has fallen by the way-side for a few weeks, but I'll be renewing my gym membership and getting back into that in the next week or two. I think my friend and I will be going to Spin class together now, which will be so much better than being a loner and going on my own! Here's hoping it all works out....!

Another day, another dollar

So work is really busy at the moment, getting everything ready for freshers' week. Despite all the planning and working and more planning and pulling hair out, I've been going out a lot more with peeps from work, which is great. I seem to have morphed from the awkward one trying to fit in, into social butterfly, almost over night. Which is amazing, I've never really got it before, but things seem to actually be falling into place around about now.

The weight is still dropping off, I'm tipping the scales at around about 14 1/2st now. I'm still doing well with the diet, apart from a pack of frazzles at the pub the other night (which I didn't even think about until I was half way through, and well once you've started something...), and breakfast this morning. Getting breakfast on campus pretty much equates to 'bad food'. You can't seem to get anything that isn't in a bun, and nowhere does any gluten free buns. Or sausages, for that matter... Not quite sure how to solve this. Maybe not getting drunk on a school night, and then skipping breakfast because I woke up late, would be a good start...

Anyway, I think the only thing I'm really having a problem with is the lack of convenience food. Have you ever tried to find gluten, dairy and legume -free ready meals? The few that exist are extortionately expensive. Or, you'll pick one up that you think is ok, then you check the ingredients... So basically everything has to be made from scratch, which is increasingly difficult when you're also busy saving the world...

I'm back!

Ok, so the whole weekly blog post thing fell by the way side a little bit... That's what comes of trying to be superwoman, I guess. So, here goes the update for the last few weeks.

I am now, for the first time in 2012, under 15 stone! woo! Only just mind, but it's still progress. I've still got about 4st to go before I reach my target, but I'm confident that if I stick at it with the lifestyle change, I'll get there by about February/March time next year.

I am following a (fairly) strict diet which rules out all gluten, dairy and legumes. Seriously, this is a monster of a diet, it's really hard to stick to! BUT, I feel better for it, I've already lost a decent amount of weight (about 4lb in 2 weeks), and I've noticed that I'm getting less IBS type problems too. Further evidenced by how bad I felt on Monday after a weekend of ignoring the diet while the bff came to stay... So now I'm back on the wagon, and I'm convinced that I'll turn into a banana or a bowl of salad before long, but I do feel really, really good.

The exercise bit is pretty much on hold until I get paid in about 10 days time, so that I can renew my gym membership, but I am trying to stay relatively active, walking instead of driving whenever it's feasible to, and trying to get into the habit of doing a few sit-ups every evening to try and tackle the muffin-top... I've even found that I'm starting to be able to fit back into jeans that I haven't been able to wear since Christmas. It's great, I feel so pleased with myself!

I don't know whether it's the diet and exercise, changing some of my meds, a combination of both, or a complete and utter coincidence, but my MS symptoms seem to have calmed down for the moment too. My legs have decided against their jelly-related career change, and my skeleton has turned back to bone instead of being lead. And this is all in spite of considerable uni and volunteering based stress! Here's hoping that the improvements continue...

I'll leave it at that for now, and set a reminder on my phone for about this time next week... over and out!

Neurodivergent

Just for something a little different as my first regular post, here's an essay that the other best friend wrote for her Creative Writing project last year, on depression (or should that be Depression?).

I expect you'd be pretty put out if I didn't at least put some sort of update on how everything else is going, so here's a quick precis of this week. I'm doing quite well at starting to incorporate the new diet. As I run out of things I'm replacing them with things that comply with the strict no dairy, no gluten and no legumes regime. I'm slightly intrigued as to what I'll replace cheese with... I've been told about non-dairy, vegan cheeses, so I might have to try some of that, and if that isn't any good I'll just have to cut it out completely. As for weight, I seem to be around about the 15st3 mark at the moment, which is better than the 16st that I weighed in at earlier this summer, but it's still waaaay too heavy for my liking, so I'm hoping that the diet will help me shift some of that. And last but not least, fitness. Well, I'll be back at spin on Wednesday night, so hopefully that'll go well, then I'm away over the weekend, but I'm going to try and do some walking as well so I can start working on endurance. When I get paid I'm thinking I might have to book a session with a Personal Trainer to pick up a few tips on how I should go about getting in shape for the marathon.

Anyway, here's the other best friend's brilliant essay:

“I know I have a good life. That's what's so depressing. I can't help it.”

– Stephen Fry

Nowadays, you hear a lot of people talking about depression. It's got a lot more mainstream as a diagnosis, and it's actually possible to admit you have it without people misunderstanding.

But that's still a very rare occurrence.

I have clinical depression. No, I'm not feeling a bit glum today. No, I am not a whiny emo teenager, nor do I need to get outside and smile. I have clinical fucking depression. It's not like getting a bit sad, or being upset because someone dumped you, or any of that. If you have depression, genuine depression, then you are spending your life walking around with a great big sack of rocks on your head. You can be happy or laugh or enjoy yourself, and like any illness there are always good days and bad days, but that does not change the fact you have an entire boulder balanced precariously up there. 

When I first started getting counselling, my mother refused to believe there was anything wrong with me because “people with depression can't get angry”. Considering that having a short temper is one of the ten main symptoms, I'm not entirely sure which part of her first class psychology degree she pulled that out of, but prejudices are always there. One of my friends has been diagnosed for years longer than I have; even when she applied for a job no less than a year ago they asked her why she couldn't snap out of it and be happy. These aren't isolated incidents; ask a person with clinical depression how often they get misunderstood and you'll be there all week.

I think one of the biggest problems is that there is no way of definitively separating medically diagnosed depression with the kind that people are talking about when they say they're feeling depressed that day. If we had two separate words in our language for them, I don't think there would be quite so many issues. Half the time, you tell someone you've got depression and they'll go, “Oh, I was depressed over summer, but I got out in the sun and it was fine” because they don't understand that the two are discrete. There are countless self-help websites that people will spout, suggesting things like going for a walk or dancing in your room, and these are great techniques. If you're sad. Not if you have clinical depression. Like I said, it might make me smile and on a good day it sure as hell cheers me up. But it's not a cure in any way or form.

People without depression often fail to understand that it's actually a reason for not being able to do things sometimes. I always try my hardest not to let my depression own me or control me, because I am not my depression. But there are days I have to stay in bed because the simple act of getting up and facing the world is so daunting that it leaves me in tears. Keeping easy to eat food in my bedroom, like apples and bread, becomes essential on bad days. Anything more exhausting than rolling over to spread peanut butter on some dry crackers can floor me. Fortunately, with cognitive behavioural therapy, medication and learning to recognise the signs of a down-spiral, I can mostly avoid these now.

Sometimes, though, I can't. And on those days, forcing a smile, eating a banana or listening to cheery music won't help. In fairness, neither does lying on the bathroom floor in my pyjamas, but I'm going to do that because it's about all I can manage. Just try to bear with me and be supportive, alright? Talk to me if I need it. Don't try to give advice unless you know what you're talking about. And above all, remember I am still a person.

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...