Category Archives: Chronic Illness

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!

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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!!

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

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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