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Progrestination sometimes works

The thing with unintelligible incurable chronic health conditions is that you end up Googling stuff that might help. You Google all night. Lot’s of nights.

It’s like procrastination but with the potential to be useful.

There’s lot of snake-oil and negativity of course – or worse, fake-positivity. Or even worse – health politics. The world wide web eventually gave me three choices: waste my time, give up or get rigerous. I went for the last option!

And… I think… I’m finally… making progress. My procrastination has turned into progrestination!

As always I don’t want to go into too much detail about my symptoms or the things that have been helpful for me. It’s private and personal, and also, because each persons chronic health symptoms are unique, probably not that useful.

However, I think the procedural things I’ve learnt about managing the journey itself could be really useful! So here’s some of that:

How progrestinate safely

I’m now quite rigorous about what / who gets my time and money.

Here are some ways of dealing with ideas and claims found online and/or medical people.

Check they make sense in general

There should be at least a theory as to why any given treatment will work. The theory might be to do with our mind or spirituality, biology or gut bacteria… something. Some logic to begin with.

Don’t suffer expensive fools. Ever.

Never trust an idea you have to pay for: products cost money to make, sure. But people selling ideas… be suspicious. Don’t go there. Open Access is finally throwing wide the doors of Science and medicine: there’s no need to lock it down again. Also, one way of ensuring that your ideas never get scrutinised is to hide them behind a pay-wall!

Avoid big egos too, people who tell you THEY have solved the puzzle.

The only person who can cure you is YOU, in the end. Doctors and such may play a role, but they will be doctors YOU have sought out, providing treatments based on information YOU gave them. And all implemented only with your consent and commitment!

Be your own hero.

Check the science (and don’t soak your nuts)

Once I find a theory/idea, it gets checked against science papers (I use this site https://www.ncbi.nlm.nih.gov/labs/pubmed to check every claim). Sometimes there isn’t enough information, occasionally there’s no research at all. But sometimes things are out and out disproved.

Science isn’t the be all and end all of course: belief is prowerfull. Prayer too. Placebo is great … and sometimes science just gets it wrong …

But when you find out that “soaking your Brazil nuts” is a complete waste of time, that the thing which you’re soaking them to avoid is actually good for you and that the process of soaking actually increases the levels of the thing you were supposed to be avoiding till it’s not as good for you and will just make you fart more….well just think about the numbers of hours of soaking and re-drying Brazil nuts you have avoided…

Science is basically invention and scrutiny. It’s your friend here.

Is the treatment relevant to YOU?

Additionally, the idea has to be relevant. I know that sounds obvious, but it isn’t always easy to tell. Sometimes I have to do some additional research into what my body is up too. It helps rule solutions in or out – it has to be solving an actual problem you have to be a solution for YOU!

I work with the doctor on this too – he will usually check any I thing I ask about with a blood test. I ask a lot of questions about the results, and research around the answers I get. For example for the last couple of years my iron count has been “Normal” but push further and I find it’s at the very lowest end of normal. Having done some research I found there is evidence that when people who menstruate have fatigue symptoms, the thresholds for normal iron count should be reconsidered. So now I am in a cycle of supplementing and re-testing.

Don’t suffer doctors either

The same stuff applies to doctors also. You don’t have to deal with any given doctor if you don’t want too. If they are rude or don’t listen, if they’re unhelpful, arrogant or lie to you – just don’t see them again.

But if they listen, offer help, can justify their treatament ideas or do something that really works for you – then they deserve your attention.

It’s not about only “being told what you want to hear” – it’s about choosing not to engage with people who don’t help you or actively harm you. As far as I am concerned, harm includes going in to an appointment a motivated and optimistic person and coming out feeling ignored and invalidated. Now, every time that happens I think: which doctor/nurse/etc have I seen who was actually helpful? And I book an appointment with them instead. By doing this I have made a lot of progress.

Some doctors are in the middle of the spectrum of course, much what they say is useful but then they make offhand comments, usually about things outside of their area of expertise (Veganism/diet etc) – well I just consider that a personality defect nowadays!

Artwork by SarahHedlundDesign, click the image to buy!

Keep pushing till something gives

Some things take a lot of time to get sorted, I spent 2 full years trying to get a pair of insoles that worked, seeing five different health practitioners. In the end I found a fantastic person in the NHS. She listened carefully and explained how she would solve my problem. From that one person I’ve had insoles that have eliminated foot pain and also compression socks that reduce my heart rate and a knee brace to heal my dislocation injury – all these things have helped make me better.

Don’t keep doing things that don’t work

A lot of the things which have helped most, helped pretty quickly. They also haven’t made me worse at any point.

Especially if you’re spending your own money, don’t keep doing things for months and months that don’t help quickly.

Focus on the things which did make a difference quickly.

Find out WHY those things work

Trying to understand why those specific things worked can be really helpful: for example, early on in my illness I had a liquid magnesium supplement that immediately alleviated a certain set of symptoms. So from there I worked out: why was I deficient in magnesium? There was plenty of magnesium in my diet but I’d had consistent problems with digestion, so I came to the conclusion that I was not absorbing nutrients properly from food. This has eventually lead to a breakthrough in my health from using supplements that I spray in my mouth or apply to my skin, rather than taking a pill or relying on food. There is reasonable evidence that these are absorbed the same or better than normal supplements and hey bypass my gut completely. So, theory, check, problem, check, science check. And I did start to feel better quite quickly, plus they aren’t too expensive. So… Check!

Keep doing the things that work

When you have a ton of different symptoms, things which work can feel like old news pretty quickly. It’s important to try and make a commitment to them though.

A good example is hydrotherapy, I knew from the first time I tried it that it was helpful for me – so it’s something I’ve pursued rigorously for a long time. It has been expensive, probably the most expensive thing I’ve done given how long I’ve done it for. Sometimes it’s boring… But it continues to allow me to make progress.

It’s also meant that when I found other treatments later on, my body is better prepared for them. For example I’ve been using a rowing machine for the past few months and it’s been really helping with my heart rate problems. I’m not sure that it would have been possible for me to actually engage with that treatment had I not been doing hydrotherapy for over a year before hand.

Listening to your body is not the same as doing what your body tells you

A (nearly) final bit of advice, regards to the constant mantra “listen to your body” and “maybe this is natures way of telling you to slow down”. You should listen to your body, it’s important – but also be aware that your body doesn’t always know what it needs (without help from your concious mind). It might know what it wants but that’s not the same thing.

For example, if you have postural tachycardia your body will ask you to lie down. All day long. I don’t mean that cynically, I mean it seriously. At any given time in the day I can listen to my body and it will say “LIE DOWN PLEASE”. Fundamentally though, lying down eases symptoms initially but it also exacerbates them in the long term. The more time I spent lying down, the worse my symptoms became. There’s good science as to why that happens.

Learning to listen to my body but not obey it has been a big change for me. I don’t know if I just took the doctor’s too literally or if that advice which I’ve been given over and over again since I very first became symptomatic is just really bad advice. But either way. Your body is not the boss of you.

I think the process of researching what is actually happening in my body during a symptom has been very helpful in learning to understand the difference between what my body wants and what my body needs. When I first understood that my heart rate was climbing by 40 + beats per minute every time I stood up, was the first time I really understood why I felt such a desperate need to not stand up ever! It’s that knowledge which has allowed me to pursue a treatment for the symptom that has caused so much disruption in my life.

Don’t be angry and don’t give up hope

Finally, don’t be angry or get involved in the angry game of being sick. There are a lot of people out there with chronic health conditions who are bitterly angry about the way they’ve been treated, maybe rightly so. Maybe they were predisposed. Maybe both.

I can understand the need to campaign: I’m literally campaign girl, usually have several placards ready and waiting in my back pocket… But there really is a time and a place.

When you engage with a situation online, whether it be reading and old forum post or actively discussing something on Twitter – take a few moments and think, do I feel good right now? Do I feel better? Empowered? Have I learned something that will contribute to my health or recovery? The answer to any of those questions is NO then just leave.

Save the rage up for when you’re better. Save it up till when you can become an MP or a scientist or a homeopath or yoga teacher or something. Change the world. Whatever.

I really believe that anger is a sickness in itself, it’s bad for your body, it’s bad for your mind and it’s bad for your soul. There are so many things out there that might help you and make you feel better – surly it’s preferable to spend your time and energy on those, on healing and recovery, above all else?

Also try and have at least one hobby that isn’t about your health 😉

Thanks for reading!

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.

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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.

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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!

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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!

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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.

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“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!

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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.

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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!

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