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.