Well, that sucked. Good job it was a sweetie.

Ok, so, basically I am a full on “disabled person” right now.

I don’t really like talking about it, except to family and close friends, so I haven’t been blogging much.

That’s partly because I have limited energy and a lot of other stuff to do. Also it’s really fucking boring. Also that sickness-blogging can be kind of insidious and evil, so I am trying to resist the temptation to “go there.”

For people with conditions (CFS, Fibro, EDS, POTS, blah) that doctors aren’t great with, where there’s no “cure” and not a lot of sciencey research, the loudest remaining voices are people personally recommending things. Things with no evidence base that are often expensive and unhelpful. Don’t get me wrong, some of it’s useful… but also some of it is snake oil and some of it is eating disorders rebranded with Instagram photos (yay!)… (or NOT).

So, like I say, I don’t really want to add my voice to the cacophony unless I have something really useful to say.

A general update: I am making progress with doctors and just at the start of a few new treatment programs and feeling fairly optimistic. I have accepted that I have some underlying conditions which won’t ever go away, but I don’t think they will stop me getting well enough to skate… in the medium term. I am still attacking life kinda head on, it’s just that I’m only doing that for a few hours a day right now. But the rest of the time I get to watch Netflix and play clash of clans. So hey, it could be worse!

And yes. I still want to be a Derby skater!!

Still alive

Just wanted to let you all know that, though it’s been a year since I posted, I am still alive and just as passionate about derby. Unfortunately my health issues have been a bit out of control and I have been focusing on getting better and keeping my earnings decent, so blogging has been on pause. More coming soon though, including some pics and videos from the ROLLER DERBY WORLD CUP!!

Hey there!!
Hey there!!

One year derbyversary: freshmeat 3.0

​I am just about to set off to the first day of my third term at Preston Roller Girls sinners training. This marks one year since I first put on states and took a full five minutes to stand up.

Under the new (and super awesome) training structure, this isn’t technically another new beginning, but there will be some new skaters joining us and it will be a good chance to go over the basics again.

I haven’t felt up to blogging in a while, there has been a lot of stuff going on that isn’t really publicly publishable, but it’s all basically wrapped up now and I feel much better for it.

So, with my health definitely improving thanks to some new medication and my motivation pretty strong, I am excited to be getting back to training. However as always, I’m not quite physically up to it so I’m also a little nervous.

One thing is for certain, I’ve made bags of progress since last year. My initial expectations were unrealistic, I suppose, as I’d hoped to be skating like a pro by now. However in other ways it’s quite remarkable that I am able, for example, to balance on one leg whilst throwing my weight around from side to side without falling over. I suppose I’d never imagined that I would be able to do something like that!

I think the most remarkable thing is the journey I have been on, rather than some specific skill I learned or am yet to master. My whole approach to my body is changing: I have gotten help for a condition I have been ignoring for years and have learned some basic skills in putting my wellbeing first, even if it means taking a risk or standing up against people who seem so strong… I am finally starting to value and utilise my fierce! Yay!

Platform 9 and 3/4: I’m going someplace magical!

I have missed a few weeks of Derby training through illness, so last week when the coaches announced it was time for the first 27 in 5 attempt I was pretty daunted.

27 in 5 is the pace needed to pass minimum skills so you can go ahead and scrimmage: 27 laps of the track in 5 minutes. On my first go, last year I got 5 and a half laps. The best I ever did was 8, but since then both my health and fitness have declined.

I started out calmly, my skating has improved a lot and I felt much more sure on my feet than before. I kept a slow pace, keeping energy in the bank for later. By half way through I was struggling to stay upright: it’s not a case of balance exactly, closer to a fitness problem. Skating uses a lot if different muscles that I don’t get to work out much in my desk job.

As the minutes roll by I start shaking and wobbling and strugge to control my stride. My mind knows what to do but my body’s not willing. Eventually I stumble: I get right back up again (because I am a total warrior like). By 4 minutes I am managing only a few pushes each lap and slowly coasting the rest of the way round: my goal is just to keep moving.

In the last few seconds I push hard to try and finish my lap but I fall again and time is called while I try to get back up.

I am exhausted and know I gave it my all.

I got 9 and 3/4 laps! A personal best under personally difficult circumstances. I am delighted!

My score written on the floor (then skated over for 30 more mins)

I know it’s a long way from 27 laps, but I am now rocking nearly 50 percent more laps than I could do at the start. That’s huge! I am really proud of myself and have confidence that I can improve a lot more as I get fitter and get my fibromyalgia under control.

I am also a huge (mahoosive) Harry Potter fan and the total of 9 and 3/4 means a lot to me: I’M GOING TO HOGWARTS BITCHES!

Is the body half full or half empty?

I have such an embarrassing health problem this week, and it had left me super frustrated with myself. The insoles I got a few months ago changed the position on my hips when I walk. Ultimately this has revolutionised the way I skate and is going to save me a lot of problems in future with my hips, feet and spine. In the short term the impact has been amazing too: when I got the insoles I had such a bad achillies injury that I was unable to walk 1/4 of a mile, now I can walk 4 whole miles almost pain free!
However… because the potiontion of my body has changed a litle, the little spots of everday chaffing, skin on skin, skin on fabric, that my body has been used to my whole life, have moved a little. Just an inch here and an inch there. It seems such a subtle change, but these bits of soft, fragile formerly chafe free skin now get brushed slightly with each step. The seam of my leggings, the eleastic of my underwear… these bastards are now my enemies!

So, over weeks and months I have has sores, abrasions and blisters the size of 5p pieces cropping up all over my thighs and bum. And there is really no respite, other than lying down all day, there isn’t much i can do to make these heal. Talc, vaseline, ointments designed for athletes… huge German underwear… nothing really works.

The current problem is a bloodblister the size of my thumbnail on that bit where the bottom meets the upper thigh. It’s painful enough that I haven’t walked anywhere for 3 days, and I have my period too, which just makes everything worse really. It’s bad enough that I might have to miss derby training… not cool! So, I am pretty mad as you can imagine!

However, in a moment of utter bleakness I was thinking about what a blister actually is. It’s basically my body’s way of protecting itself. And pain, thats my warning signal that something is wrong. While the need to slow down and heal feels so frustrating inconvenient, my body is doing some pretty cool things right now, and it’s good that I take a moment to appreciate that and be that thankful.

So, with a half-full glass of metaphorical champagne I say “cheers” to the blister on my ass and all the fluids who sail in her! My body is a wonderful thing.

Fun like you are a kid except you are a growup

I had the best time at freshmeat today! We played this game at the end where we all skated around like crazy trying to dodge the people who were “it” and if you got tagged you had to take a knee, lie down like a sausage and couldn’t get up again until two more people came and lay down either side of you to make a bun, like a hotdog. The people who were “it” were trying turn so many people into sausages that no one was left standing. I honestly don’t thing I have ever had so much silly kiddish fun in the whole of my adult life!

Forget the bruises, I wonna be a sausage!

The best thing is that all the care and concern I usually take to my skating just went out the window! I normally obsess over what my feet are doing and try really hard to perfect every stride, which is important to think about, but learning to skate on instinct is vital too. As the game started I just threw my self around and went as fast as I could, and becoming a sausage or a bun was just awesome, I threw myself on the floor skidding along on my pads with out a second thought, I don’t think I have ever done something like that before, even as a kid, I was always to scared of getting hurt.

wp-1475442496353.jpg
Sweaty smiley me and the ever fresh-faced Kim Pain after practice today

The skate train: learning to push with my feet

I made some real strides with my skating today (pun intended) when doing a drill where we stood “in a train” of two or three people, arms out, knees bent and holding the hips of the person in-front. The skater at the back had to “skate” and those at the front had to stay still/steer. This really made skating “stick” with my for probably the first time: I suddenly felt like I got how to do it.

wp-1475442460372.jpg
Sunny skies on the way home, to match my mood

Sticky skating: knees then feet make better lemons

We did sticky skating today as well, I struggled a lot with it as always, especially as I forgot to put my insoles in which makes like I am braking when I try and glide my feet back together.  One tip which I found out is to point my knees where I want my feet to go, rather than thinking about my feet so much. This made a big difference to me. But I really need to remember to wear my insoles next time and work on the strength of my inner tights and groin, cause man, that skill is hard!

wp-1475442421431.jpg
My post skating festival: big meal (high in anti-inflammatory foods) with Gillmore Girls and a nice lie down for desert!

Appointments galore: attacking fibromyalgia, once more with feeling

Things are finally on the move again health wise, having trialled and axed two types of medication (who needs to have hallucinations on top of chronic pain right?!) I am getting to the good stuff of physiso and occupational therapy and more. I will keep you posted on what happens over the next few weeks… I have a LOT of appointments!

screenshot-from-2016-10-02-21-37-27
My full throttle medical schedule

My first sportsbag: learning to love the journey

I have never owned a sportsbag, for most of my life I simply never needed one. Only sporty kids have sports bags. At some point, though, the sports bag became a symbol of everything I am not, but would secretly like to be: athletic, confident, thin, coordinated, cool. There’s just something so solid, so quietly resilliant about them: worn from regular use, tough, years old, a little muddy, the unchanging sign of an entire lifestyle which has always been so alien to me.

At some point I made myself a promise, that one day I would buy mysef a sportsbag… when I deserved it, when I was good enough. But this week I baught myself one anyway. Not because I have become some paragon of athleticism, some slim, cool, driven, competitive parallel world version of me. No, I baught myself a sports bag to celebrate returning to freshmeat training for a second time and giving it another go. I bought myself one because withholding sensible practical items (no matter how symbolic) from myself is mean and weird. I baught myself one because I need something to put my stuff in!

One thing I have learned so far on my derby journey is that everone, no matter how great a skater they seem, is on a journey of their own: each used to be less good at skating than they are today and each has skills they want to work on for the future.

At my first freshmeat traing session of the season today, I realised just how far I have come on my own journey, and how confident I must seem to those who are taking their very first wobbly strides. They can’t see my journey, they don’t know that just a few months ago I was the slowest to stand up and the first to fall down. I can hardly belive it myself, so it’s important to sit back for a moment and just appreciate the journey for a while. We are all of us awesome right?!

So, it may take me years to feel I deserve something as auspicious as a sports bag, though hopefully one day I will believe in myself enough to just get over it. One thing I  can say for sure though is that I will never be as good a derby player as I want to be, because I will always want to play harder and faster than I did the week before. And that is exactly how it should be.
Ps: omg my feet hurt!!!

Rollerderby: medical treatment for the more belligerent invalid

The melodrama of my health problems continues, and finally I have a diagnosis which explains a big group of my symptoms. The symptoms being the chronic pain and the diagnosis being fibromyaglia.

tender_points_fibromyalgia_svg-svg

“Fibromyalgia (FM) is a medical condition characterised by chronic widespread pain and a heightened pain response to pressure. Other symptoms include feeling tired to a degree that normal activities are affected, sleep problems, and troubles with memory” – Wikipedia

The diagnostic process involves ruling out other conditions (such as arthritis) and the presence of a distinct pain-point pattern.

Naturally, for a contrary lady such as myself, fibromyalgia is controversial condition inspiring lots of  disagreement within the medical community. It even has an accompanying band of trolls, haters, deniers and conspiracy theorists on the internet! Goody.

Offal’y lucky lady 😀

I have so far been very lucky though, I have seen a good rheumatologist, have several amenable doctors at my local surgery and I have already had, pre-diagnosis, some really helpful treatments like insoles and physiotherapy from a specialist department which is just up the road.  Also, I now officially don’t have gout after all! Whoop!  I can now eat as much offal as I like… which is still none!

wp-image-442848249jpg.jpg

Pills are a downer

I am waiting for the main bulk of my treatment to kick off, in the mean time I have been trailing some medication…. which has not gone well.

The first one they tried was Amitriptyline, an antidepressant used to treat nerve pain. The side effects I had included panic attacks, crying and regular bouts of despair.  Frankly it’s been totally shit.

I have finished that now and am just about to start on another kind called Clomipramine. Both the doctor and the pharmacist seemed hopeful that this one will be okay, but the list of side effects is just horrendous, so I am not sure how I feel about it. Even if it works, I am not aiming to stay on this long term. The primary method of controlling fibro is exercise.

Exercise  Roller Derby as a cure

I am hoping for things like hydrotherapy and additional physiotherapy from the NHS, plus a graded exercise programme and some other cool stuff I am looking into. While I am waiting for this to start, I am carrying on with my long  contemplative walks, daily gentle stretching …. and my insane quest to learn to play roller derby.

il_570xn-1002193082_ooys

The way I see it, Roller Derby may not be the ideal exercise for someone with fibromyalgia, but it’s exactly right for me. It motivates me!

Without Derby I probably would never have got a diagnosis, I hadn’t really taken my body and health seriously enough to even get close. It’s even hard for me to figure out how long I have been unwell for, because I have just ignored myself for such  long time I just never registered what was going on (or not going on) with my body. In this sentence I even referred to my body as being myself! Progress!

1 week till fresh meat

I have 1 week left till my sinners to winners course starts, and I really am terrified. I am scared it’s going to be total hell this time round, actually feeling, or starting to feel, what my body is telling me as I try to hold myself upright on skates… I know this is going to be hard, harder than last time for sure. It’s going to hurt.

That said, I have come a long way with my physio and I know I can do some basic things on skates now, so I have a head start on where I was last time round. So it’s… cool. I am gonna be okay.

And after I am okay… I am gonna rock!

a7f8cd2eb3689bebbea62123e0eae160