Unboasting (Part 2)

Last week I posted Part 1 of my unboast, where I talked about how I recently ended up at the bottom of a bottomless pit. Now I get to talk about the nicer bit, about how I - with the help of a fantastic set of friends - managed to claw my way back out of the pit. The way back up: The point at which I left off was the torture of dissertation deadlines: I felt so utterly rotten and useless; I’d been given more than a year in which to finish the larger of the two, and I still ended up needing an extension. I then began to question whether I had made the right decision in opting to do a dissertation in lieu of exam for my Shakespeare module. I knew everything I needed to write; it was all there in my head, all in plain sight. It was like looking through a window, behind which was the solution to everything. Except, there was no way to actually access it. I knew it was there, but I could not for the life of me work out how to extract it and fashion it into an essay. I’ve written before about having brain fog, but what I was experiencing while I was trying to finish my dissertations was on another level entirely. I couldn’t concentrate on anything, and when I did try to force myself to concentrate on writing, I would start spiraling into a panic attack. Several times I found myself feeling like giving up, and then guilt-tripping myself for failing so badly at the last hurdle. Luckily for me, I have some incredible friends who were able to say what I needed to hear at the right times, to give me enough to keep going a little longer. I guess this is probably going to sound like an award acceptance speech, but I feel like I should thank those people. There are four in particular who were amazing, and they all helped in different ways. So first up was the boss lady, who kept checking up with me to see how much further I’d got, and to force me to get up out of my seat and speak to my department about the problems I was having. Then the bff, who reminded me that I didn’t actually *have* to do anything; if I wanted to I could just stop and not do any more. This sounds like a very backwards sort of advice in this situation, but for some reason, that knowledge that I wasn’t obliged to do anything, helped me to carry on. Next, there is my amazing friend, the internet queen, who proof read and kept reminding me that she believed in me and my ability to finish what I started. And last, but certainly not least, is the gym buddy, who gave me a few metaphorical clips round the ear, and told me to buck my ideas up enough times that I actually did :) I do feel like this is a bit of a cop-out post, because it wasn’t really through my own efforts that I managed to crawl back out of the pit of despair, but because of my amazing friends knowing what to say at just the right times. But I don’t feel like I can claim responsibility for something that I didn’t do much for myself. So to everyone, thank you. You’ve all helped me to get through it, and to learn things about myself that I should probably have already known, or was ignoring…

Unboasting (Part 1)

I’m not quite sure if unboasting is a thing, but if it is, that’s what I’m doing. Since my last proper post (ignoring the reblogging of adorable and uplifting motivational stuff), I have reached the bottom of the bottomless pit of despair, and I have (with the help of some VERY special and lovely friends) managed to claw my way back out of it. The way down: I don’t cope very well with stress and I have known this for a long time; however, I also work at my best when I am under pressure. I saw a graph the other day on here that illustrates it perfectly. A few months ago I had to make the decision to defer my graduation until later in the year (I was supposed to finish my degree in May and graduate in July; I ended up finishing my degree on Wednesday, get my results mid-September, and I’ll be invited to next year’s graduation ceremony), so my 10,000 word dissertation wasn’t due until 1st August, instead of the original date in late April. I also made the decision to do a dissertation in lieu of exam for one of my modules (Shakespeare), which was also deferred until 1st August. When it came to August 1st, I was panicking like crazy; I barely had half the 6,000 words I needed for the Shakespeare dissertation, and I still needed about 1,000 for the other one. Thankfully, my department took pity on me and extended the deadline until Monday, when I successfully handed in my main dissertation, and then again until Friday, and once more until the following Monday for the Shakespeare dissertation. The problem? Every time I sat down and started trying to write, I started to panic. I was so useless, why was I even bothering trying to write this thing when it was all bullshit anyway? I still had so much to write, and not enough time to do it in. I kept calculating in my head over and over how many words I would have to write per day, per hour, per minute, to get the job done, and the answers always made the prospect of finishing look bleaker and bleaker and bleaker. I found a temporary solution to this problem. Stop writing; buy ice cream; feed face; stare into bottom of empty tub; cry. It ended up taking me a whole week to write 500 words. That’s just over 70 words per day. This was really, really bad. I felt like I would never see the end of it, and all I could hear going round in my head, over and over, was Useless. Worthless. Stupid. Failure. And then, in my aunty’s voice, This Is Important. You Must Do This. You Must Finish This Thing. Then back to my scathing internal monologue, Failure. Disappointment. Then, probably because of the stress, the lack of sleep and the overindulgence in ice cream, coffee and energy drinks, my MS symptoms started to flare up. They were having a great party! My right eye decided that it had seen the left eye doing its little jive, and it wanted to give it a try. Then they both decided they’d work together on it, and leave me with double vision for a bit. That was the point at which I reached the bottom of the bottomless pit.



via Tumblr http://i-am-not-ms.tumblr.com/post/59096374146/unboasting-part-1

Boast Update...

I think I might have to start making this boast thing a thing now… I decided not to go swimming this morning, despite getting up early enough, because I was going to go to aqua this evening. But I still wanted to do *something* because my body just felt like it needed me to do something to wake up properly. So I road-tested my new yoga mat (not literally…), following the cute bunneh’s yoga sequence instead (I only managed to do it twice, but I figured that’s not that bad since I’ve never done yoga before). I am *so* glad I am getting back into my old old sleep pattern, where I actually wake up at a respectable time in the morning, and I feel alive! instead of half-dead. I really hope this keeps up. I mean, I’ve only been wishing for it since I lost my sleep pattern working stupid hours at a hotel while I was at college in 2008/9… Didn’t go to aqua in the end because my sudden CREATIVITY DRIVE ACTIVATION happened and I have two weeks to finish two dissertations, so… But yeah, I still did something, so I’m happy anyway. :)



via Tumblr http://i-am-not-ms.tumblr.com/post/55714585118/boast-update

I'm not boasting, honest!

Ok maybe I am a little bit, but I think I have a right to be quite proud of myself right now. I actually managed to get up early enough today, that I had time to go to the gym and do a 45 minute workout before work. O_O I am still a little in shock at this… I’m going to try and do the same tomorrow, but swim instead….



via Tumblr http://i-am-not-ms.tumblr.com/post/55598201388/im-not-boasting-honest

Synchronising the Things

So I did say that I was going to run the Blogger and the Tumblr pages side by side for a bit, but then I got busy and forgot, so... it's got a little behind on that score. But hopefully now I've worked out how to get them to synchronise automatically. With a little bit of luck and a following wind, you won't be able to really see the difference between a post that I've posted on here, and one that's synchronised from Tumblr, but I'll have to see how it ends up working out and then fiddle with it a bit more when I know what's what.

I haven't found a way of easily synchronising posts I've already put on Tumblr onto here though, so I've used a feed which is just over to the right there >>>>>> so you can click through the links if you want to catch up. I'm quite proud of some of my more recent posts from Tumblr, so I'd really like it if you did decide to catch up on where I'm at.

I'm also starting another blog project with a friend soon, which should hopefully be quite good. It'll be focusing more on mental and physical wellbeing rather than MS specifically, but it will probably still be relevant to this blog. I'll set up another IFTTT rule to feed it into this one (or I'll reblog them on tumblr and that'll feed in. I don't know quite how it'll work just yet...).

Over and out!

The Energy Bank

Imagine, if you will, that Energy is your body's currency. Unlike ordinary money, you can't save up for a special occasion or a rainy day; instead, you receive a fixed daily allowance. You do, however, have an overdraft, the interest for which is extortionate, and the terms require you to repay the debt over the next few days+. This means that if you have used your Energy overdraft, you will often have significantly less Energy in your daily allowance for one or two days after.

You must use Energy to pay for everything you do throughout the day; this includes trivial tasks such as getting out of bed, cleaning your teeth, and preparing your meals. Eating well provides you with a small return for your Energy investment. spent preparing the meal. Naps are a slightly higher risk investment, since you must also invest Time, and your Energy return is not necessarily larger than or equal to your Time and Energy investment. Occasionally, the Energy bank shortchanges you and gives you less Energy in your daily allowance than you would normally have. Those days are usually bad days.

Every so often, you receive a bonus in your Energy allowance which you can use to complete extra tasks during the day, which would normally be too expensive. As with your normal daily allowance, if you don't use it, you lose it. There is some evidence to suggest that the healthier/more physically fit you are, the higher your daily allowance is; however, this does also require a bit of a gamble, as exercise can be very expensive.  Especially if, like me, you have never been particularly fit. 

The majority of customers banking with the Energy Bank receive quite a sizeable allowance, and rarely need to make use of their overdraft. More often than not, it is only used for things such as jetlag and special events such as weddings, birthdays or New Year's parties. There are, however, a significant number of people who, for one reason or another, receive a significantly smaller allowance. Most will suffer from long term illnesses such as MS or ME; people with depression, or on long term medication; and even insomniacs and shift workers.

The Saga Continues - Lights are Blinding My Eyes (post 6)

Date: July-September 2010

Age: 20-21

 A week after I start my DMT, I go on a 3 week residential course at Lancaster, in preparation for university in the autumn. My 21st birthday falls on the first Saturday, so I arrange to take the train home for my birthday weekend. A couple of days before my birthday, I get a stabbing pain behind my left eye, and I notice that if I cover my right eye, most of my vision has been replaced by a grey blur. This causes a lot more problems than one would imagine, besides the lack of vision... For one, my depth perception abilities take a nose-dive.

Despite the agonising pain behind my eye, and the loss of vision, I manage to get home in one piece on the train on Friday night. On Saturday, my 21st birthday, my aunty's managed to book me a last minute appointment at the optician's. The optician rearranged her other appointments, and worked through her lunch so that she could make room for me. When I get there, she spends almost an hour with me, doing every test available to her. She says she has a good idea what the problem is, but she wants to call a colleague of hers who is an ophthalmologist at one of the local hospitals, to get a second opinion.

She rings me later, to ask me to come back and see her again. She does a couple more tests that her colleague suggested to her, then she confirms that it is very likely that it's Optic Neuritis, which is quite common in MS, and usually clears up of its own accord within 4-6 weeks. She advises me to just take normal anti-inflammatory painkillers, but to see my doctor if it takes longer than 4-6 weeks to get better, of it gets worse.

As predicted, the optic neuritis goes away of its own accord within the 4-6 weeks that my optician stated. I don't think anything of it until the very end of August, when I notice that it's come back again. This time my optician recommends that I speak to my MS Nurse, who tells me to go to my GP, and request a course of steroid treatment. I'm already running late for my engagement dinner, but I decide that it's not worth putting it off until tomorrow, and I go to the doctor's. The GP writes out a letter for me to take to A&E, explaining what I need. I ring my parents to say I won't be able to make it to the restaurant.

After waiting in A&E for a not inconsiderable length of time, I get taken down to the Medical Assessment Unit, to wait for someone to hook me up to a drip. They eventually get round to seeing me at about midnight (I have been there since about 5pm by this point), and the doctor assures me that the steroids will stop me from sleeping, and will make me feel euphoric. As they get ready to wire me up, the squeamish fiance runs away, leaving me on my own.

I wake up in the early hours of the morning, freezing cold, and still attached to the now empty drip. I continue to doze for a few hours, until the ward consultant does his rounds in the mid-morning. He tells me that I need to take my condition more seriously, and chastises me for having left it so long before coming to the hospital about the Optic Neuritis. I burst into tears, which he interprets as having got the message through to me that I need to stop being a silly girl who doesn't take her health seriously. The reality is quite different: I am so furious that he would DARE to make such an assumption about me, when he has no idea about the lengths that I have had to go to, to get medical professionals to take ME seriously. I am so incensed by his attitude that I cannot even speak. I am too busy getting things ready for University to be able to put a complaint in.

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.

The Saga Continues - Sand and Water, Baby (post 4)

Date: December 2009 - January 2010

Age: 20

At the beginning of December, about a week after my flu vaccination (the normal one, this time), I leave my hotel job in order to take up a position in a call centre, with far less difficult hours, and no lifting-and-shifting involved. In the middle of the month, I go for my interview at Cambridge. Around about the same time, I get more numbness. This time from about the waist down. It feels like I'm wearing buckets full of sand for shoes. It also feels *really* weird when I pee....

Later, I go back to the neurologist. Thankfully, my neurologist is back this time. The numbness is pretty much gone by the time I see him, but I explain to him what happened a few months before, and the locum's clear misunderstanding of what I was trying to explain was the problem. He dismisses her comments, and says that he thinks that this is probably the next relapse, and that i should go for another MRI scan, to confirm whether there has been a significant increase in my lesion-load.

At the end of January, I have my MRI scan. I'm quite perturbed by this as, rather than the cushy private clinic that they got me into last time, this MRI machine is in a lorry trailer outside the back of the hospital. It is *freezing* cold, and the radiographer who does the scan is incredibly rude. She gives me headphones so I can listen to music instead of the loud noise of the machine. I'm not quite sure what she does wrong with the music, but there is nothing for a while, and then all of a sudden this loud jazz number bursts through, making me jump, so she has to start the scan again. I go home, and prepare myself for another long wait...

A little bit of pampering goes a long way

 While I was at home for Easter, my cousin, Jenn, coerced me into having a bit of pampering at the salon she works at, in exchange for a blog review. So here it is. The salon, TMS, in Teddington, looks really fresh and inviting. Everything is immaculately clean and inviting. The decor is one of those urban/industrial meets floral type things, which I really like, you get a real contrast between the flouncy wallpaper, and the exposed steelwork in the ceiling.

Once I'm sat down, Jenn gives me a complementary drinks menu, and then we discuss what I want done to my hair. I've already dyed it quite recently (thanks to a friend's husband's expertise in home-hair-dye-jobs), so I just need it cut. Now, I'm one of those people who never does anything with her hair. I wash it every couple of days, brush it every so often, and that's about it. So I want something simple and easy to keep, that's easy to make look nice if the fancy takes me. Oh, by the way, that's me on the left, before Jenn attacked my hair.

To the weird head-sink things we go! I'm never all that fond of these, because they hurt your neck, even though it's supposed to be such a pleasant thing having your hair done. I've gotta say, this changes my mind. If I ever manage to amass enough money, I think I will employ someone to wash my hair for me like this every day. She massages my scalp, and the back of my neck where it's been resting in the cut-out bit of the sink. Seriously, best head massage ever. Ever. 

Aaand this is me once she's finished with me. Ok, so I'm not exactly brilliant at taking selfies, and the zoom on my phone isn't all that great either, but you get the picture. Straggly rats tails transformed into something a bit sleeker and more manageable. Jenn gave me some choppy layers, taking a lot of weight out of the back, and I'm really pleased with it :) it even looks great with my usual, roll out of bed and drag a brush through it look. My hair's naturally a little bit wavy, which I think really suits this style too, and I can get the straighteners or the hairdryer out if I want to go for something a bit more stylish. 

When I've finished with the obligatory unpacking and tidying up that goes with getting back from a break, I'll scan in the leaflet with all the details about the salon too. Watch this space...

The Saga Continues - Rotten Swine (post 3)

Date: October 2009

Age: 20

So by now I’ve left my job to go back to college, so I can go to university. Because that’s the sort of crazy, last-minute decision that I make when life isn’t already handing me enough lemons.

I take three AS levels, so that I have enough time to work alongside college. I start off working for an agency doing waitressing for hotel and banqueting facilities – most notably, the prestigious Wentworth golf club. I get to meet a few famous people through this connection –Cliff Richard held my hand and thanked me for picking up his napkin; not necessarily the best claim to fame, but a claim nonetheless...

I've finished my first year of college, and have made my university applications to Lancaster, Durham, Warwick, Bristol and Cambridge. I receive an invitation to interview for Cambridge, and an offer from Lancaster.

This is the year that swine flu was a thing. I have just recently had the swine flu inoculation. When getting ready for college one morning I realise, while brushing my hair, that my scalp has gone numb in much the same fashion as the left side of my body did earlier this year. I call and make an appointment to see my neurologist, because this might be the next relapse which will confirm the diagnosis of my MS.

When I turn up for the appointment, I find out that my neurologist is away, and there is a locum consultant covering his appointments. I explain to her the history of the problems, and explain where I've been experiencing numbness on my scalp. She does an examination, focusing on every part of my body *except* the bit which I've told her is numb... Predictably, when I receive the follow up letter from her, she explains how I'm such a nice lady, with lots of potential, and how she cannot find anything particularly wrong with me...

Guest Post - MS From the Outside

This is the second 'outsider's view' guest post, from one of my best friends (who has already featured in some of my posts). I've gotta admit, when I read through her draft, I did get a little teary... Thanks hun, it's really lovely to hear your point of view on things, and how it's not just me that has worries or concerns about my future and long term health. :3 xx

I’ve been asked to write an outsider’s view of MS. I’ve started it about 6 times now! And not been happy with one of them.

So, I’m just going to write it how I saw it, and hope for the best.

Then I shall hide behind my sofa for a week in case I’ve said something that warrants getting slapped!!

-

I’ll never forget sitting on that step next to the garden pond when my best friend told me she definitely had MS. It was a fairly nice day. Sun shining, at least a little bit. I don’t remember it being cold.

I do remember the ice cream, it was Ben and Jerry’s Phish Food. I think I’d bought it because Ben and Jerry’s can fix everything. We sat there and polished most of it off whilst she tried to explain to me everything about what the diagnosis meant. Taking it all in was a little difficult. It didn’t seem real, but then when it started seeming real, it started feeling terrifying.

I remember chain smoking cigarettes and hoping she wasn’t noticing that I was chain smoking cigarettes. I also remember being terrified at the prospect of the needles, and trying desperately not to come across as terrified at the prospect of the needles. And failing miserably. I really am terrified of needles.

I also remember thinking, “she’ll cope with this, if anyone can cope with this, she can”. I did try to explain that, but how well it came across, I don’t know. She doesn’t think she’s a strong person.

Maybe that’s what makes a strong person, not realising you are one. She is one. Tits to what she thinks. I can see it. She’s definitely a strong person.

At first, she really did seem to cope well. Whether she was really coping or not, I don’t know. I think in a way, she was and she wasn’t.

I do know that I probably didn’t help all that much.

Not all that long after the diagnosis, I quite clearly remember watching that rotten programme by Terry Pratchet about the clinic in Switzerland. Yes, That Clinic. There was a lad on the programme with MS.

I rang her up in tears to demand a promise that she’d never, ever go to Switzerland. The thought of losing my best friend is just horrendous, especially to something like that. Horrendous doesn’t even cover it. I just don’t have the words. That sodding programme really got to me.

My best friend, however, laughed at me and told me not to be so bloody ridiculous.

Well, so she should. I was being bloody ridiculous!

But I was just plain worried. Albeit over nothing. I think more than anything, it was just the idea that had worried me, the concept. And the fact that it was so irrelevant hadn’t really crossed my mind.

Do you know though, I think that’s when it finally sunk in that although it’s a big deal, it’s not all that much of a big deal. She’s not going anywhere any time soon. There’s that whole thing called life to get on with first. My best friend is really good at life.

As time went on, there were ups and downs. There was a point when she didn’t look so great (sorry mate!) or so happy. And knowing that there’s naff all you can do to help is so frustrating. I mean, really frustrating. A whole new level of frustrating. I wished there was more I could do, but at the time I just didn’t know what.

But she knows how to help herself. And that’s just amazing. I’m not so certain most people do. In fact, I’m pretty certain I cock it up myself on a regular basis.

That point didn’t really seem to last too long at all, and every time I’ve seen her recently she looks fabulous, so much happier. If a little stressed out at times with uni or dishwasher/dishcloth related problems!! But still, fabulous. Not drawn or tired, just well, you know, really well.

(This last time, I could swear she’s grown too. Maybe it’s the steroids. That or I’ve shrunk…)

I might get strangled for saying this, but it’s the eyes. You can always see that determination in her eyes. Cheesy though it sounds, it’s bloody well true! And that’s that. I shall take no arguments. Even when she was going through a rough patch it was still there, not as much, but definitely there nonetheless. Now days, it’s as bright as anything.

I reckon my best friend can beat MS. If you take beating MS to mean coping with MS and getting on with life, well, she’s already done it really. And I’m sure she’ll continue to do so.

MS aside, this is the girl that quit a “perfectly good job” to go and follow her dream, and she’s certainly done that.

She’s a bloody inspiration, that much is for sure.

The Saga Continues - Pins and Needles (post 2)

Date: May/June 2008

Age: 18

I get up one Saturday morning and I have pins and needles in my hand. Not to worry, they usually disappear after a few minutes anyway, so I ignore it and carry on with my day. Only the pins and needles don’t wear off. All day. By the end of the day the pins and needles seem to have spread to half way up my forearm. The next day, they’re as far as my elbow. I book an emergency doctor’s appointment on Monday morning, at which the doctor tells me that it’s probably something very simple like carpal tunnel syndrome, and not to worry. She tells me to come back if the symptoms don’t improve, or if they worsen.

I wake up on Wednesday morning and I have pins and needles in my foot. Not to worry, I think. You’re only concerned because of your hand, but that’s probably just carpal tunnel. The pins and needles will go after a while… By lunchtime I notice that, rather than going away, the pins and needles have made it as far as my thigh. I call the doctor. She tells me to go to A&E right away, because the carpal tunnel prognosis doesn’t fit. So off I go to sit in A&E for a few hours…

I finally see the triage doctor in A&E, who tells me not to worry, it’s probably just carpal tunnel syndrome, like the doctor said- ‘in my foot?!’ I retort. Shamefaced, he hurriedly explains that he’s referring me to a neurologist, and hastily scribbles out a referral note for me to take to my doctor in the morning. The next day I book an appointment with the neurology department for the following Wednesday.

By Friday I am in agony. It’s so difficult to explain to people what it’s like for something to be numb, but hurt at the same time. Nobody quite gets it. I leave work early on Friday afternoon, because I am struggling to even type anything, it hurts so much. My friend takes me back to A&E, where I’m quite quickly taken through for further tests. One doctor keeps running around the emergency room saying ‘ECG?’ to all and sundry – even to my friend, who doesn’t have anything wrong with her! Later, they lose my ECG results, so I end up with this doctor coming back several times to say ‘ECG?’ again…

I have a CT scan, before which, the porter (trying to allay my fears) tells me that it’s ‘better than one of those MRI things, you have to have these massive injections for them’. The on-call neurologist says that there’s ‘evidence of demyelination’, which strikes me to the bone. Demyelination. I know that word. Mum’s MS. Demyelination. MS. Demyelination. Mum. MS. He leaves me with my friend, for that information to sink in. Before he comes back, another patient is put in the cubicle next to mine. She wails and wails, in between deep inhalations of gas and air. She is almost hysterical. One of the nurses tells her to shut up and calm down, or the gas and air will be taken away, which shuts her up for a short time. By the time the neurologist comes back, the wailing is so loud that we can’t hear ourselves think, never mind what either of us is trying to say. By this time it’s almost 8pm. I’ve been in A&E for nearly 8 hours. I’ve had blood taken, I’ve been examined with unbent paperclips and cotton buds (a sensory test… not nearly as weird as it sounds…). Finally someone tells me what’s going on; I am to be kept in, and the porters wheel me up to the stroke ward. Great. The lady opposite me calls out for the commode almost hourly.

I end up being in hospital until Tuesday, during which time I have an MRI (no massive injections, thank goodness! Although I do get told off for fidgeting too much…) and a lumbar puncture. Thanks to the doctor performing the lumbar puncture being an absolute numbskull and forgetting to tell me not to sit up straight after the procedure, I had the most horrible post-lumbar-puncture headache (or PLPH), which lasted for about 2 weeks. I was absolutely fine when I was lying down, but as soon as I got up to eat anything or to go to the loo, the world would start spinning and I’d start to feel sick… On the up-side, I did get to freak people out if they happened to see the marks on my back from where the needle had been in my spine (the doctor had to have a couple of shots to get it right, which wasn’t great either…).

Around comes Wednesday and my neurology appointment. Except the hospital haven’t updated their records, so as far as they’re aware, I’m still an inpatient in another hospital. But they don’t tell me this until I’ve been waiting around in absolute agony because of the PLPH for over an hour. Not. Happy.

Eventually (about a week or two later, I think) I see the neurologist, who tells me that he’s almost certain that I have MS, but that it can’t be officially diagnosed until I’ve had a second relapse. He thinks that the diplopia (double vision) was the first relapse, but because it was never looked at by a neurologist at the time, he can’t prove this. Thanks stupid doctor, telling me to go to the optician… So I wait.

An Outsider View: Living With MS

This post is from my little brother's blog, Life of a Stage Gremlin, which he very kindly wrote for me:

I was asked by my sister to do a post for her blog (I Am Not MS) on what it is like having a sister and mum both living Multiple Sclerosis (MS). I was asked to do this a little while ago, so it may be a bit late.. but here it is:

I can't remember exactly how long ago my mum was diagnosed with MS, I think I must have been in year 3 or 4, so that would make me 7 or 8 years old. At first I didn't really know the impact of it, other than my mum was ill and it meant that she couldn't do as much as she used to. She couldn't walk, or drive or even work. There were a few books that I was given to help me understand, and now at the age of 16, I can't remember what most of them said, but one thing I did remember. It's like getting a kink in a hosepipe, so the water can't flow through it - now I know more about the symptoms of MS and how they affect the persons body, I see how the metaphor works. MS attacks the nervous systems, meaning that the signal going from your break doesn't get to the part of the body that you want to do something. 

Now almost 10 years later, I can look back to see how much my life has changed because my dad has had to take up all the slack, he has to work full time still, he has to cook every night, do all the shopping at so forth. My mum just doesn't have the energy that she used to, she can't do anywhere as much as she used to, which is saddening because I know how much she used to do for everyone. Now she sometimes goes out, but has to get a lift from my dad or someone else, otherwise she tends to sit in front of the computer, because there's not much else she can do around the house and she can't just go out for a walk or a drive. 

 It also frustrates me knowing that my mum used to work hard and was in a well respected job, and the government are hardly giving her anything for the fact she had to give up her job and can't go out, and even to get that she had to fight for it because my dad 'earns to much' so she isn't entitled to get anything.

My sister was diagnosed with MS 6 years ago when she was 17, making me 10 years old. By the time I was 10 I knew more about MS and how it affected different people and that no case of MS is the same, that there are some things that can help the symptoms allowing people to try and continue with their day to day lives just people slowed down by it every so often. Finding out that my sister had got sent home from work one day because of double vision and numbness was a bit of a blow to me, and then later finding out that she also had been diagnosed with MS wasn't a nice thing to hear. What it was nice to know was that her case wasn't as bad as my mum's meaning that she could still continue with her day to day life. Looking at where she has got to day,even with MS trying to hold her back, it shows that she hasn't let it. I know she has days when she doesn't want to get out of bed, or just doesn't feel right, but she managed to go to college and then university. I don't think many people would have got as far as her if they were in her position. 

One thing I know has made an impact on me is that I can't really remember what my mum used to be like before she was diagnosed with MS. And there have been some changes that I've had to make so that I can help my mum, but I can deal with that. I don't think of my mum and sister as having MS, I just think of them as my mum and my sister. I know there's things that they can't do because of it, and I have that thrown in my face everyday. To be honest I couldn't give a sh*t that they both have MS, I love them to pieces and they are still caring, they are no less now than before they were diagnosed. They are just my family.

The Saga Begins (post 1)

I started writing a post for MS Awareness week, but as you can tell by it not now being MS Awareness Week, I didn't manage it. What I started writing was a post about how I got to where I am now with my MS, and as the post lengthened, I came to the conclusion that it might be better to break it up into parts. So here is part one of my journey with the Monster.

Date: March 2007

Age: 17

In my little cinquecento, on the way to work, minding my own business, and WHAM, all of a sudden I can see two copies of the same car in front of me. Double Vision. Great… I manage to get myself to work by aiming roughly in the middle of the two identical cars I could see. Admittedly, .looking back, I probably should have pulled over at that point, but I don’t think of sensible things like that at the time… By about lunch time, I decided that working when you have double vision is less than ideal. Every time I looked round to talk to someone behind me, I must have looked like I was stoned out of my tree. I was concentrating so hard on trying to determine which version of the person was real, I don’t think I was really paying much attention to what they were saying to me.

I went to see the doctor later that day, only to be told I had to see an optician before they would even think about helping me. I’d already worked out that, since the double vision came on so suddenly. But apparently that didn’t matter. I had to see an optician. Who told me I have astigmatism (which don’t *tend* to be diagnosed when you’re 17…). Queue lots of faffing over an almost negligible astigmatism for a few months… Luckily the double vision settled down after about a week and a half, so back to work I trundled, and on with life I went.

Of course, now I know that double vision (or diplopia) is quite a common symptom in MS. Ahhh, if only I'd known that sooner! The joys of hindsight...

Riding the Rapids

Ok, so I have now, officially, had over 1,000 page views. Which is just scary, I honestly didn't think I was that interesting... Thanks for listening

However, because of that I'm going to publish this post early (I was going to wait until the weekend, although I actually wrote it *before* my last post....). I hope you enjoy :)

I am also going to pledge £100 towards my (minimum) £1,500 target for running next year's London Marathon. I'm hoping that a lovely friend will help me set up one of those donations pages, which I'll obviously post a link to when it's set up.


Anyway, here's my post, Riding the Rapids:

I was talking to the SGBF one night last week about the CBT sessions, and the Fun Fortnight of hospital appointments, and he made a comment about having to carry on fighting. I can’t remember if I’ve posted something about this before, but I thought it was significant enough to warrant a post anyway.

All of the semantics surrounding illness and coping with long term illnesses, in particular, rely on aggressive, war-like metaphors. You ‘fight’ an illness if you want to try and carry on with your life; you ‘struggle’ to come to terms with things; someone ‘loses their battle’ with cancer when they pass away. We’re always waging war on our bodies, for getting things wrong or breaking down.

I’m sure with some illnesses, and for some people, these cognitive metaphors are useful; they inspire people to carry on in the face of adversity. They encourage strength of spirit, and a particular sort of candour about a difficult situation. I, however, struggle to see the worth of this particular cognitive metaphor. I have a disease that is currently *incurable*. Why the *fuck* am I wasting my already limited energy fighting it? Am I not already aware that I’m fighting a losing battle? I might gain ground now, but I’m only going to lose it again further down the line. Should I not be putting my already sparse energy reserves to better use?

Besides which, what exactly is it that I’m fighting? I feel like I’m in the chamber from The Pit and the Pendulum, flailing around wildly in the absolute, pitch blackness, hoping that a punch here or a kick there will miraculously land in the right place and floor my enemy, and that I won’t fall into the pit in the meantime. But who or what *is* my enemy? What am I fighting *for*? These are questions that I just cannot answer. I keep being told that I’m strong, that I’m a fighter, that I should carry on fighting, but I don’t know who or what or why I’m fighting in the first place, and I’ve got to be honest with you, I’m tired of it all. I am *exhausted*.

Of course, I explained all of this to the SGBF, so he decided to try and come up with alternative ways of thinking about it, firstly suggesting “controlling” or “keeping [the MS] at bay”. I contested these, saying they still felt confrontational and aggressive; I tried to elucidate, by explaining what I was trying to get at was that I know I have a limitation, so I want to work *with* it, not against it. I want to be able to go with the flow, not fight against it to get a tiny bit further upstream. Going with the flow doesn't have to mean you’ll get pulled under or drown; you can still do what you want, and go at your own pace, you're just using the path of least resistance to do it.

The response from the SGBF was truly inspired, and one that only a direct quote can best portray:

“Riding the rapids: It's a delicate balance of controlling your boat so you don't sink, but also accepting you can't go upstream”.

Apparently this spark of inspiration is thanks to the Comic Relief fundraiser that has been plugged a lot on Radio One recently. Since I pretty much live in a university bubble, and have little to no knowledge of what’s on television or national radio, this was news to me. Apparently a group of 6 celebrities including Dara O’Briain went white water rafting down the notoriously dangerous Zambezi River in Africa in aid of Comic Relief. Well, thank you Comic Relief for providing me with a much more satisfactory metaphor for how I deal with (or rather, how I *want* to deal with) my MS and how I cope with it.

The Fun Fortnight!

These two weeks (the one just gone, and the one starting), I have an inordinate number of hospital appointments. I had four last week, and three more (plus the dentists, but that doesn’t count) this week. Oh and two more the week after that. So not many then, really…

Last week’s appointments were Orthotics, Physiotherapy, CBT/Mindfulness Assessment and Neuropsychology Assessment. The last two are appointments I’ve been waiting for since I first saw my MS nurse, which was about 6 months or so ago, so it’s good to finally get them out of the way. It’s all been a-go though. I got a ‘foot-up’ walking aid from Orthotics, a promise of a foot clinic referral from the Physiotherapist, then the really fun bit starts.

When I turned up for the CBT Assessment, I was given one of those ‘how much do you agree with these statements’ questionnaires, that you always get whenever you have any interaction with the mental health profession. So I duly filled the form out as honestly as I could, and handed it back to the lovely CBT expert lady. I can honestly say she looked shocked when she saw the form, because my referral from my MS nurse had said I don’t have any mental health issues, but apparently my form tells a different story, and gives me a score of 12, which means I have mild to moderate depression. Whoop-di-doo...

As she said all this, I started welling up (as is my wont), and she said, ‘oh dear, now I’ve said the wrong thing, haven’t I?’ So I sat there for most of the hour-long session, explaining about various things that have been trotting round my head and keeping me awake at night, and she explains that with the initial referral, I wouldn’t have been eligible for full CBT, only a ‘mindfulness’ course, but following everything else that I told her, I probably also have PTSD, and CBT is very definitely on the cards. It wasn’t quite my intention when opening up to her, but it’s definitely a good outcome. I’ve heard lots of good things about CBT from various friends who have had CBT, so I’m actually looking forward to the first CBT session next Thursday (appointment 3/3).

Then appointment 4/4 from last week was the Neuropsychologist. So I zoomed down the motorway to Preston, and filled out another of the ‘how much do you agree with these statements’ questionnaires, trying to remember what I’d put in the morning at the CBT clinic, so I could try to be as consistent as possible (since I didn’t really feel like I’d changed my feelings in the intervening hours). Eventually my appointment starts, and I meet the Neuropsychologist. I explained to him about the cognitive difficulties I have, like not being able to remember words (I did a post about this a while ago), and words playing silly games when I’m trying to read, like swapping places with other words on different lines. I told him how my memory has got worse, and my attention span has all but disappeared.

Then finally, he tells me something I’ve been waiting to hear for years: the cognitive issues I’ve been having AREN’T just me imagining things, or going mad, and they ARE consistent with the sort of cognitive issues that you can get with MS (despite what my neurologist told me about that being something that you only usually get once the disease is far more advanced than mine). *huge sigh of relief* I’ve been trying to tell people this pretty much since I went back to college. I mean, I got stupidly good GCSE results, considering I did *zero* revision for any of them (I even got an A in Maths, and I’ve never been good at Maths…), then I worked stupidly hard for my A levels, and came away with 3 measly B grades, and I only scraped them, at that. Admittedly there was a 3 year gap in between my GCSEs and my A levels, in which I was working full time, but regardless of that, I couldn’t work out how my grades could have been affected so significantly.

Now, it’s not as simple as that’s just the diagnosis and that’s the end of that; now I’ve got to wait (potentially quite a while – bearing in mind that it’s taken 6 months to get this far) for further tests to quantify what I expressed to the Neuropsychologist, so that they can rule out any other factors. This is definitely progress though. Hopefully this means that the exam board will look a bit more favourably on my results for this year, which would be nice. And I should be able to get a bit more support from my Dyslexia tutor.

I hate feeling like I’m using my sort-of-ill-health to my advantage though. I don’t consider myself disabled, although I do admittedly have a debilitating condition. Equally, I also dislike the sure knowledge that I am capable of far more than I am achieving, but there are invisible barriers and trip wires all over the place, preventing me from displaying the intelligence I know I have. I know that makes me sound like a stuck up intellectualist, but that’s not quite the point. The point is that I *know* that I can do better, because I *have* done better, and I *know* that there are things that I should be able to do, like writing a coherent essay, which I struggle with now, and that’s probably one of the most frustrating things to have to deal with. Ever since I had Optic Neuritis, just before I started university, I’ve said that the worst thing that I could lose from the MS would be my ability to construct and convey a coherent argument; to be able to understand complex theories and ideas, and apply those to my reading. And that’s what it’s felt like I’ve been losing, and I’ve felt like I’ve been going mad at the same time, because I had nothing to prove that I ever had those skills to start with.

This week’s appointments are: Occupational Therapy on Monday morning, Neurologist on Tuesday afternoon, followed by the Dentist, and then my first CBT session on Thursday morning. I wonder what the rest of the week will bring…

In other news, after having put weight back on over Christmas, I’m happy to report that the numbers are going back down again. I’m getting back into my bi-weekly aqua sessions, and I’m going to book a gym induction session during the week, so I can start doing some specific exercises that my Physiotherapist has suggested. Fingers crossed that I can make significant progress over the following months…

Something a little off-topic

According to various public figures – politicians, celebrities, TV stars, and many others – what women wear, and how they conduct themselves, contributes to whether or not they are likely to be raped or sexually assaulted. Don’t wear short skirts, because they’re too sexy; don’t wear high heels because you can’t run in them; don’t show more flesh than necessary, because you’re inviting unwanted attention. Don’t go out after dark, don’t park too far away from your destination, don’t walk unaccompanied in certain areas, don’t do this, don’t do that, don’t do the other. Don’t. Don’t. Don’t.

But then, we’re also told that we should prettify ourselves. Wax our legs/underarms/bikini lines, so that we are more attractive to men; wear makeup so that we are more attractive to men; wear the latest fashions so that we are more attractive to men; emulate the style of the stars, so that we are more attractive to men; wear high heels, because they make our legs look good; have the perfect body so that we are more desirable; wear figure hugging clothes so that men can see our curves, and how attractive we are. We are taught that our sole worth is based on how pleasing we are to the heterosexual male gaze.

Is it just me that can see the horrible, cruel irony of what these people are saying? For a lot of women, we wear the clothes we wear, because we are told that we should desire them, because they are fashionable, because the current favourite starlet is wearing them. We also wear what we feel comfortable in, what we feel ‘sexy’ in, what makes us feel good about ourselves. The reason that a lot of these clothes make us feel good, is because we feel desirable. What makes us feel desirable is largely dictated by what our culture tells us should make us feel desirable.

There are oh so many problems with this restrictive view of what women should be, and should do. Why, on a night out, should we dress as if we are expecting to be raped, and not dress as if we are going out to enjoy ourselves? Maybe I’m not the best person to talk about this; I don’t wear heels (I fall over) and I don’t wear short skirts (I don’t like them). But I recognise that it is each man or woman’s prerogative to wear whatever they want to, whenever they want to.

Of course there are exceptions to this rule: sometimes uniformity requires, or practicality dictates, that we should wear something specific. I would, for instance, laugh at anyone attempting to use a treadmill wearing a stacked heel; riding a motorcycle wearing the shortest of short skirts would be not only impractical, but dangerous. However, there are occasions – and going out is one of those occasions – where we should be able to wear what we like, what we feel comfortable in, what makes us feel good.

All of this dictation over women’s (and increasingly, men’s) bodies, and what should be done with them, completely forgets the facts. The majority of rapes have nothing to do with sexiness or practicality of clothing, and everything to do with a display of power from a sick-minded individual. A study from 2005 noted that the majority of perpetrators are known to the victim. The majority of rapes are perpetrated by someone known to the victim. More often than not, they happen in what should have been a safe place. At home, at a friend’s house, at a family member’s house. In a house. Not an alley way. Not a street, or behind the bins at a club. Not in a toilet. In a house. At home. According to a 1991 source, 1 in 4 women in the UK have experienced rape or attempted rape. Internationally, 1 in 3 women have experienced a sexual assault, and of those women, over 60% have experienced more than one incident.

And the worst bit? 91% of women surveyed in Painter’s 1991 study had told no one of their experience. Another report, the Statistics Canada 1993 survey (the largest of its kind worldwide), states that only 6% of sexual assaults worldwide are reported to the police. 50% of those involved in this survey did not report their experience, because they did not think anything would be done. Now obviously, these studies only cover a few thousand women, and there are over 3 billion women in the world. However, the findings are fairly consistent across each and every study. An alarming number of women have experienced some form of sexual violence, and an alarmingly high proportion of those experiences go unreported – sometimes not even divulged to close friends or family members.

So next time you see something I’ve posted, and you think I’m over-reacting; next time you see or hear someone slut shaming or victim blaming – think. Try to understand where I and other feminists are coming from when we say that these things are problematic. If you can, why not call those people out on what they’re saying, tell them why what they’re doing is harmful to women’s rights. Show them that not everyone thinks that the length of a woman’s skirt dictates her character or her likelihood of being raped or sexually assaulted.

Statistics and references sourced from Child and Woman Abuse Studies Unit (CWASU) 

FML doesn't even cover it

So my laptop's died, which is fun. Although, I think praise is due to the Disabilities Service at uni, for getting me a netbook to borrow for a week so I can get my laptop fixed, and doing so in less than half an hour from me telling them that I had an issue. A lot of people moan about the provisions for disabilities and so on, and there are several issues there, but all of my experience with them - whilst sometimes slow in coming - has been very positive, and has shown that the staff genuinely give a fuck about what they're doing. So well done there :)

I'm not entirely convinced by netbooks, mind. Being used to a mahoosive 17.5" screen and a full size keyboard and number pad, the tiny little thing I've been given as a stand-in is just downright odd to use... I have been considering getting a netbook, so I don't have to lug the monster machine around with me all the time, but I'm not sure if I could cope with the tiny.

In terms of other things, Christmas and stressful essay stuff at the start of term has meant I've gone back up a dress size and about a stone. Staying with Grandma over Christmas didn't help; I'd just got to a point where I felt ok in my own skin, then having, 'that won't do your waistline any good' on a regular basis totally smashed that. So I hid all my christmas chocolate in the car, and then stuffed myself when I got back home :/ Then of course essay stress, and my laptop decided to commit suicide, and that inevitably equals ice cream. This is probably something I should address, eating when stressed doesn't make for a very good long term plan.

In any case, the current plan is to get back on track with Aqua next week, and to work out how to change my diet to make it healthier and more sustainable. I should also go and see the doctor again about this IBS thing... Oh well, life goes on, I suppose.