Girl Under Duvet

Blog announcement

Sun, 02 Sep 2012 20:56:23 +0100

Greetings Blogosphere.

Quick announcement. For a while now I’ve been maintaining 2 blogs that serve very similar purposes with ever so slightly different focuses. The Pippapotamus has been for articles whilst Girl Under Duvet has been a blog about my battle with ME and auto-immune thyroid disease.

So from now on all ME etc related things will be moving over to The Pippapotamus - Enjoy!

Websites For Dog Days

Thu, 16 Aug 2012 10:51:00 +0100

This has been a really good week. It’s been a hard week, but I finally got back to the pool for the first time in almost 9 months. When in the pool I just floated a bit, but it felt incredible. I used to do long distance swimming and it was ‘my’ sport. Hours and days have been lost in water and so it felt like a big hurdle to get back to it. I’m a walrus compared to my old size 8 frame - Thyroid diseases are horrible things that turn you into monstrous versions of yourself - but this is a big step to getting parts of myself and my identity back.

In the spirit of all things jocular I thought I would share my two favourite doggy websites with you all for those times when you just need to smile.

First up is something you’ve probably heard of as it’s a bit of a viral internet hit - Text From Dog

The premise is beautifully simple but painfully accurate and just so irresistible to any dog owner. The mastermind of animator Joe Butcher, the site is presented as texts sent between one October Jones and his Bulldog Cooper. The charm of it is the dog has dog-type questions about life that October really doesn’t stand a chance of being able to answer. Recurring themes include Cooper’s dislike of October going to work, Cooper’s insatiable sex drive/appetite/need to bark…

It makes me laugh out loud, without fail every time. The BEST bit is, it’s being made into a book in time for Christmas this year (out in October called Texts From Dog - October Jones. Available to pre-order now)

Next up is something a bit cuter… The Daily Frenchie… Sadly no witty premise here, but a lot of very gorgeous photos of readers’ French Bulldogs (so only really worth a look if you like the snub-nosed bat-eared cuties that are French Bulldogs)…

The Paleo Pyramid The Paleo Diet - 1 Month On Perhaps the...

Wed, 08 Aug 2012 13:19:00 +0100

The Paleo Pyramid

The Paleo Diet - 1 Month On

Perhaps the biggest challenge in the process of getting my thyroid disease under control is the lifestyle changes that I need to make. Because it’s not just an under-active thyroid but an auto-immune disease it would seem there are a hell of a lot of them. Ostensibly the most daunting felt like it was going to be the revolutionary diet that my doctor insisted I go on. I’ve always been suspicious of anyone who just says ‘dairy’s bad’ ‘gluten’s bad’ but never actually explains why, but it would seem that in my case there are very specific reasons why I need to radically change what I eat. It would seem there are lots of things thyroids don’t like. First of all there are goitrogens - foods that contain these, such as broccoli, actually work to suppress the thyroid further. Then there are foods that inhibit the absorbtion of the thyroxine drugs I need to get my thyroid gland functioning again. Secondly, auto-immune diseases are actually enabled by gluten - somehow gluten is basically auto-immune disease fuel and is very readily absorbed into your blood, letting the auto-immune disease have as much fuel as it wants. These are very good arguments to me, not just hippified rants about whole food groups being bad for no discernable reason.

Of course dairy is always a contentious issue too, but one of the most powerful arguments for giving dairy up for me was an archaeology paper I read about the history of agriculture that said that historically, man only ate dairy during times of famine when the harvest failed - ie when they couldn’t afford to kill the animals or times when perhaps many of their herds had been killed or perished for some reason due to weather perhaps as they didn’t have enough other food and had to make everything go a lot further. Studying LBK era pots and dating presence of dairy fat deposits in the pots showed that dairy was only eaten for these time periods and then given up when crops were plentiful again and animals healthier. Dairy was an emergency ration not something they naturally felt should be part of their diet and I feel there is a lot to be said for that natural instinct of our earlier ancestors for what is good for the human body. Man’s natural lactose intolerance meant milk was rarely imbibed in liquid form but made instead into cheese as apparently this was easier to digest for those people who lacked lactase (needed to digest lactose). You can read more about the origins of milk and dairy in man’s diet in this International Dairy Journal here.

To resolve these and many other conflicts my doctor put me on a diet that was pretty much what is more popularly referred to as the ‘Paleo’ or stone age/caveman diet.

So what does that mean? This basically eradicates any ‘modern’ processed food from diets. No dairy, wheat, refined sugars, grains, legumes… Some fruit is vetoed too for its sugar levels as mainly nuts and berries are preferred. All meat is allowed, as long as it’s lean and preferably grass-fed to prevent dairy and nasties entering the food chain. So, nothing that man hasn’t eaten naturally for thousands of years. This has complications when mixed with a thyroid condition. Taking out all glutenous vegetables and legumes (peas, rice, beans, lentils, pulses) and just leaving mainly green vegetables, there is a conflict in that some of these green vegetables - broccoli, cauliflower, kale, spinach etc - are goitrogenic and unless cooked will suppress thyroid function.

At first it seems daunting and terrifying. No carbs, no comfort food. But then you start realising all the inventive yummy things you can have. For example, all casseroles (herbs, spices, garlic, onions etc are all a-ok) are good to go, as are delicious soups. No wheat and gluten or dairy seems hard but there are alternatives, and whilst the Paleo diet shouldn’t be about finding alternatives (it should be about adopting a new diet that embraces fresh food and unprocessed food), almond and chestnut flours and sweet yummy almond milk mean you can still occasionally have an illicit carb-like hit. Also nuts and dried fruit can become a good go-to snack I’ve found.

What do I miss? As someone who couldn’t go more than a few hours without chocolate I thought that it would be the brown, velvety, milky hit of heaven I missed the most, but surprisingly, the cravings that hit me when I’m walking round the supermarket are for baked goods - for cake or doughnuts or other really bad glutenous treats. (Praying they alleviate soon)

Being on this diet has turned me into a total twat when I’m in the supermarket. I almost cannot bear what comes out of my mouth. I’ve always eaten well and always been a big fruit and veg fan so I guess that’s probably one reason why this hasn’t been impossible for me - It’s not like I’m a fried food junkie trying to convert to only eating green things - but I still feel really self conscious as I hobble round the aisles, studying labels asking my boyfriend “Is this organic darling?” and exclaiming “Oh my God why have they added sugar to this it’s ridiculous!”… I sound like a food fascist… and I guess the diet is making me one, a little bit. But in a good way. I was someone who was already aware of healthy eating, of calories and food groups and nutritional values, but going Paleo has been a whole new level of education and trying to get rid of all processed food and all refined sugar alerts you to just how much seemingly inert and ‘good’ food is horrifically bad for you and crammed with extra sugar and maize starch (another no-no for Paleos as it’s a legume).

Right now it’s all a bit too soon to tell if it’s all working - sadly I was coming from a place of being far too ill to expect too much in a month. I think there are changes but they could be the drugs, they could be the diet. I expect that in all truth, the two are working together to fix how much damage this disease has done to my body over the last 4 years and it’s going to take a while to really feel all the benefits of it, but it’s a challenge I’m enjoying and a positive step I’m enjoying undertaking after being so ill for so long and bed-ridden for so long.

Obviously as an off-shoot whilst the diet has been recommended specifically for the Hashimoto’s disease, many elements of it are things that people have been recommending I try for a while to help aspects of ME, but the reasoning behind it was never as compelling for me personally. I had been tested for celiac disease and was found to be negative and trials of giving things up before never really gave me any real benefits so I just tried to eat healthily and eat a balanced diet (even if that entailed a bit too much chocolate). I’m hoping very much that such a big change will have health benefits for me across the board and if it helps the underlying ME that I still have to contend with after this thyroid business is back under control then I ain’t complaining!

I’ve started collecting my favourite Paleo recipes and snacks on a Pinterest board HERE. It’s just started but will be growing as my exploration of this strange new food world continues. My next plan is to invest in a food dehydrator to make everything-crisps!

Perhaps misleading in its form, the thyroid gland is shaped like...

Sat, 14 Jul 2012 19:07:23 +0100

Perhaps misleading in its form, the thyroid gland is shaped like a butterfly.

A familiar trope for any ME sufferer when visiting even the most understanding of doctors is one of misunderstanding and of having symptoms and frustrations overlooked. Many struggle and battle to get their initial diagnosis even made, whilst others battle to get their doctors to look past their ME diagnosis. I fall into the latter category and since getting diagnosed with ME 13 years ago my - largely very kind GP - and all the other doctors and consultants I have seen have often been all too quick to blame any symptom or problem I have on my ME. This has been problematic. ME is a vague and grey mass of symptoms but having it does not mean you are excluded from being able to get anything else wrong with you. I’ve just spent 4 years battling to get recognised a thyroid condition that has totally decimated any progress I previously made with my ME management diagnosed. The combination of having ME and a thyroid problem is overwhelmingly difficult to cope with when untreated and when my doctors have glossed over it and looked everywhere else but the most obvious place in my blood test results for almost half a decade it has been disheartening to say the least. It has been uplifting and relieving to get to the bottom of the mystery. It won’t help my ME symptoms but it will help me get back on track with managing my disease and I could have been saved 4 years of extra suffering had my doctors been a bit more open to what else my symptoms could mean in an ME patient.

What is most agonising is that the thyroid disease I have runs in my family and so they had a huge genetic marker to go on. but we got there in the end and I will soon be on my new medication and also having to start a radical new ‘stone age’ or ‘paleo’ diet - yoiks! No dairy, gluten or wheat (or most grains, some fruits and many other carb sources) for me any more folks! but I’m excited to do anything however radical now I can actually get better from this 4 year slump. Before the thyroid diagnosis I wouldn’t have done the diet, only in combination with the drugs am I happy to give it a go as a supporting mechanism for the actual medicine that’s going on that my body desperately needs to start functioning again.

I have auto-immune thyroiditis which is developing into something called Hashimoto’s. This article about Sarah O’Neil’s fight with the disease from The Independent in 2006 describes perfectly what it’s like living with an underactive thyroid, just how debilitating it can be, when it is untreated for a long length of time and degenerates.

There is no doubt I definitely have ME as well as a thyroid problem as the ME predates my thyroid symptoms, but this thyroid problem could be masking progress I could have been making with the ME and also has destroyed all the headway I made fighting to manage my ME.

If you think you might have problems with your thyroid, read more at the British Thyroid Foundation

Another good source of information is online at endocrineweb.com

Chronic fatigue syndrome eased by cancer drug

Tue, 12 Jun 2012 18:14:33 +0100

Chronic fatigue syndrome eased by cancer drug:

An anti-cancer drug could hold the key to treating chronic fatigue syndrome (CFS). Symptoms of the disease eased in 10 of 15 patients given rituximab, an anti-lymphoma drug.

Thanks to We are Cardiff for helping me spread awareness for May...

Mon, 07 May 2012 11:02:06 +0100

Thanks to We are Cardiff for helping me spread awareness for May 12th - International ME/CFS & FM Awareness Day by including my story of my battle with ME today on the site. Please support ME Awareness day by Informing yourself about the illness and tweeting about how others can learn a bit about it too. Read the story on We Are Cardiff here: “ME is debilitating, misunderstood, confusing and unpredictable” – Pippa | We Are Cardiff - thank you Adam Chard for lovely photo too!

Please support International ME Awareness Day. The best thing you can do is to learn a bit more about the disease – The best place to do it is at the ‘Get Informed‘ page at the actionforme.org.uk charity site. On May 12th, tweet the link, post it on your profile and help increase awareness and understanding for this stigmatised disease. We need the government to put more money into research. You can also support the Facebook page for ME awareness day. Or donate to ME Research UK, the UK body funding biomedical research into the disease.

Any of you who know me how much swimming means to me and how 4...

Sun, 22 Apr 2012 18:49:51 +0100

Any of you who know me how much swimming means to me and how 4 years ago i was swimming 7-8 miles a week. You also know how ill i’ve been and i’ve gone the longest in my life without being in water - almost 6 months. My body hates me for it. it’s a catch 22. Swimming helps all the ME symptoms so much, but not when you get to the point of being ill enough to be hospitalised. Then you just cant do it. I have been having so much trouble breathing and moving but, today, finally… i made it to the pool for the first time in months. now. i dont want to make this sound grander than it was. i just did some stretches and a couple of very slow lengths, but it felt magical and my body and blood pressure was so happy to be back in the water. Now im home im a blubbering, tired, aching mess with a migraine, but im glad i made it back and it’s going to be a slow road. but i swam today. i might not make it back for weeks. but today i did it. i know today some people ran the london marathon and i dont want to disregard their efforts, but i envy them. what i would give to be able to train for a marathon right now! Like I said. Today I got in a pool. This time my recovery is going to be a long road. I dont think im going to be swimming regularly for a long time. but it felt so lovely and all i right now is to be able to be a fitness freak again! but i must be patient with this ill body that needs time to heal.

Run up to ME Awareness Day and We Are Cardiff

Thu, 19 Apr 2012 21:50:00 +0100

This week I wrote a piece for ME/CFS awareness day (to be published for May 12th) for the fabulous website We Are Cardiff. It has been a very personal undertaking to help try and increase awareness and education of the disease and I will share with you the story as soon as it’s been blogged. I was also lucky enough to have my photo taken by Mr Adam Chard / Croatoan Design for the blog piece – one of the few people who I think could make me look human right now!

Symptoms 101

Wed, 11 Apr 2012 00:18:24 +0100

Symptoms 101

Some Facts You Should Know

Wed, 11 Apr 2012 00:16:00 +0100

Some Facts You Should Know:

Some interesting (US-based) factoids… such as

“Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a disabling neuroimmune disease that affects more Americans than AIDS, breast cancer and lung cancer combined; more people than have multiple sclerosis or cystic fibrosis; a disease where patients are more functionally impaired than those suffering from diabetes, heart failure and kidney disease.This disease, which costs the US as much as $26 billion annually, has been sorely neglected by government health agencies.”

Photo

Sun, 18 Mar 2012 19:14:30 +0000

"M.E. is a chronic illness affecting 250,000 people in the UK."

Sun, 18 Mar 2012 19:11:09 +0000

“M.E. is a chronic illness affecting 250,000 people in the UK.”

- Action for ME

Never too early to start plugging for ME awareness day...

Sun, 18 Mar 2012 18:54:11 +0000

Never too early to start plugging for ME awareness day...:

May 12th is ME/CFS Awareness day. Please support by simply educating yourself on the illness and maybe tweeting/facebooking a link or two to encourage your friends to do the same.

ME - Not a Modern Folly

Sun, 18 Mar 2012 18:41:35 +0000

My thoughts of the day. Many people believe ME/CFS to be a modern illness born from resistance to antibiotics/superbugs and other such like. It is fascinating when you study the history and trace back ideas and evidence of the poor poor people suffering from the disease before it was recognised. I feel antibiotics didn’t invent the disease but helped make it less fatal. ME makes your immune system very weak so you catch a lot of bugs. If I dont have a flu jab I can catch flu 5 times a year and I have had chicken pox 3 times. So. Without modern medicine I am positive one of those would have killed me. ME is not a modern disease. Modern medicine has just made it less fatal. Last year I almost died from a diabetic coma caused by… ME. The people who weren’t put in asylums or branded ‘sickly’ or, if lucky, probably died from the other problems ME causes. There are accounts of people dying from ‘failing’ and other ailments and many feel that Emily Dickinson may have suffered from it. I would love to one day study this in more depth - I’m sure I’ll get there. Please can we challenge this myth of it being a modern folly.

ME can cause death. Many are too paralysed to feed themselves, that’s if they’re not killed by the other more indirect and weirder by products like blood sugar crashes (without being diabetic), blood pressure/volume problems and many, many more.

Girlunderduvet

Up to Date

Sun, 18 Mar 2012 18:37:34 +0000

So that just about brings us up to date - March 2012, 2 years later. A lot has happened. I won’t try to bore you with the details. I just feel that there is too much not being said and not being done not to keep trying to get some kind of extra support and words out there in the ether.

Po'Mo Cripples!

Sun, 18 Mar 2012 18:33:46 +0000

MONDAY, 10 MAY 2010

Cripple!

Last week I went to a gig with my darling fiance, let’s call him J. I am shuffling around with the aid of a stick at the moment and needed to find a chair once inside. Obviously these are not ideal gig-going circumstances - especially for a sold out venue as I spent most of the set staring at the back of people’s heads as they were thrown around with the great abandon of rock and roll. My problem is that when I book tickets to these things my mind is often a little over enthusiastic about my capabilities.

My fiance, whilst being lovely, has a penchant for causing a sensation by playing to other peoples’ prejudices and sense of political correctness. This has caused many an awkward moment when he, being part Indian himself, has probed a little too deeply into others’ sense of right and wrong surrounding racial slurs! This means that he relishes, a little too much, the opportunity to do the same when it comes to disability. This gig was a prime and humorous example. When there was a crush to vacate the packed building after the gig, J rushed ahead of me like a human battering ram and jubilantly shouted “Cripple coming through! Make way for the cripple!” Demonically throwing a cheeky smile back towards me as many of our fellow gig-goers scattered and stared, not knowing whether to obey or argue the orders.

Five years ago I somehow endured a course at university in Cultural Criticism. This was a mulch of critical theory, gender studies, and all things politically correct. It was agony, and I am not sure what drives anyone to teach a room full of 18 year olds a subject that encourages them to talk about ‘identity’. Blah! what it did encourage me to do, however, was to consider the post-modern jubilant redefinition of prejudicial slurs for minority groups, and led me to enjoy, childishly, ‘shocking’ people with my use of terms usually negatively associated with disability.

It is a infantile and perhaps seemingly silly pleasure, but beneath lies a serious issue of semiotics and the cultural meaning assigned to words and the questions of how these meanings and attitudes can, if ever, be changed and challenged.

Archive: Good Day Bad Day (NB Not steve lamacq related!)

Sun, 18 Mar 2012 18:32:00 +0000

FRIDAY, 30 APRIL 2010

Good Day Bad Day (NB This is not steve lamacq related!)

Today I experienced both the good and the truly awful in society.

First the bad, which is the way I would choose the running order to be - the night is darkest before the dawn and all that.

When I was leaving the pool after managing my first swim this week a man saw me get into my car, which was parked in a disabled bay, and marched with a sense of Daily Mail reader right and wrong towards me. He saw a young person getting into a car, not in a wheelchair, not immediately visibly infirm (my stick was already in the car) and assumed I couldn’t be disabled. Assumed that, because all young people are ‘disrespectful’ and in the wrong that I must be following suit and abusing the disabled parking bays. He unleashed a verbal wrath upon me which, even though I put him firmly in his place, distressed and upset me. I felt judged and utterly misunderstood. this was inverted prejudice and I reacted in an utterly irrational way. I felt assaulted. I felt this man represented every battle I had been up against during my illness. His bloated, grimacing form seemed to deny me my pain and my suffering. In short, it felt shit.

To my surprise, I recovered reasonably quickly after a quick self-indulgent cry only to face the daily struggle to find a disabled parking bay outside my flat. This is an issue I have written to the council about, talked to the police, written to my MP… I’ve tried everything but nothing has helped the fact that in a bay for 14 cars, on any given day or night, 10/14 cars park there without a disabled badge. I therefore wasn’t surprised when I got home to find no spaces free, but all my alternative parking options were also full because it is a Bank Holiday weekend (or as my mother calls them, wank solidly’s). There were 2 policemen nearby, however, and when I explained the situation to them they literally couldn’t do enough to help me. Despite Friday nights in Cardiff being world-famous (Wall street journal anyone?) for binge-drinking related incidents, they sprung into action, ticketing all the illegally parked cars and in turn allowing me to park incredibly illegally and making sure I wouldn’t received a ticket for doing so. Bloody Brilliant! :-D

Another one from the archive

Sun, 18 Mar 2012 18:31:15 +0000

THURSDAY, 29 APRIL 2010

Graded Exercise - one of the triad of recommended treatments. My thoughts

Here’s an excerpt from an email I recently sent to a friend who is about to start graded exercise therapy…

“I was always very sceptical and threatened by the idea of graded exercise and so I wanted to tell you my experience of it in case you were feeling the same. Sorry if this email seems very nosy but no one really knows how this blummin illness works - even people who’ve been there and so I always feel its important to stick together!

Anyway. Graded exercise… I always felt threatened by the idea as I worried that it was a ‘nice’ way of saying ‘get off your arse you’re not ill just forgotten how to get on with things’. Then I realised that I was already on a self-imposed graded exercise programme that I feel has been remarkably beneficial.

I think it gets sold badly. They sell it as a ‘cure’. What they should do is explain that by making sure your body is in the best physical shape possible you can make the most of what little energy you have. I think for some people this ends up seemingly to ‘cure’ them as perhaps they were simply managing their energy poorly before. By starting with yoga, then swimming and progressively building those up by stupidly small increments I got so much better. Right now I am very ill again but I know that carrying on swimming even if its a tiny amount and keeping my body fit I will stand a better chance of pulling out of this slump. When you look at it scientifically it makes a lot of sense. Poorly conditioned muscles take more energy to get going than well conditioned ones. So if you have less energy to start off with you’re going to be wasting a lot of it on getting your body kickstarted.

I just wish they would explain it like that to people. Whenever a medical professional’s talked about graded exercise to me I’ve felt like they’re being condescending and I’ve felt I’ve needed to protect myself from them. I call it the hedgehog reflex. Retreat and resist. But graded exercise is a good thing. I’ve just had to do it myself because I’ve found it hard to trust any doctor besides my gp and a psychologist I once used to see.

Sorry for all that! I just wanted to offer you my thoughts incase you were as dubious about it as I once was and hope that this treatment centre can help you get a little more from life if not a lot more.

I’ve been ill 11 years now and I’ve learnt one thing. That there is no cure but hundreds of little thing we can do to manage the illness and build our energy up to get the most from ourselves. Even when we’re in the worst of slumps/relapses like I am now!

Sorry again! This has been a bit of a soapbox rant! Please don’t be too pissed off or scared to email me back. I am capable of listening too!”

A little bit of History

Sun, 18 Mar 2012 18:30:22 +0000

MONDAY, 26 APRIL 2010

A short history of My ME

I chose this time to start my blog over any other year in my illness because I have recently had a serious relapse - my worst in 3 years. Relapses are a sharp kick in the balls for anyone with ME because they negate any progress you feel you have made.

I had begun to think I was perhaps getting better properly, steadily but surely taking on more things and learning how to pace myself and make the most of what little energy I have. Pacing is the religion I have to live my life by. Spontanaeity is a foreign word to me because it costs me so dearly. If I try to be careful and not overdo things then I can do far more than I could otherwise. An early lesson my whole family had to learn was to lower our expectations for what I could do day to day. We are a family of high achievers. We don’t get ill. We dont fail. So one of us getting such an enigmatic and difficult illness was a quagmire for us. It almost tore us apart as we struggled to understand it and those closest to me couldn’t find a way to see how I couldn’t just get up and get on with things. I felt the same way. I was sure if I could muster the determination or balls then I would be fine to grit my teeth and carry on, but however much I pushed myself and told myself there was nothing wrong with me, that it was all in my head, getting out of bed was still often impossible.

I contracted ME as a post viral complication of Glandular fever when I was 14. I have spent my teens and early 20’s - the years of our lives we are told we can make all our mistakes and find out who we are as individuals - fighting to get through each day.

GCSE’s and A-Levels were a nightmare. My school was relatively understanding but it was still a bit of a touchy subject and the government were dragging their heels on an official line the state school system should take. I went in for half of the school day whenever I could. It was horrible. I was so isolated and confused. Learning about the illness, I have come to realise, is the key to managing it. I was depressed and anxious and had to see a psychiatrist. I still feel like I have been ‘awkward’ and have imposed my illness on my family. I was treading water all that time, fighting a losing battle and never accepting my illness and working with it because I resented it so deeply. I simply believed it would go away in a year, 2 years. Every year it was still with me made my hope and resolve crumble for a while. Some people can recover from ME in a matter of one year, others 4 years, and some never, and nothing is known about how and why. I do everything right these days, follow all the recommended treatments and still it plagues me.

I spent 5 or 6 years trying to understand and accept my illness. You have to tread a fine balance between acceptance and optimism to fight this thing. Only when you accept your limitations can you work around them, and yet if you give into it completely and let the illness construct your identity, then you are trapped by it, and I have met so many good people who never manage to get better or do anything more than lie in bed because they have let this happen. I understand how and why this happens. I know I have only managed to fight as hard as I have because I have the best Mum anyone will ever have. She has been there for me through everything. I only managed to go to university because she drove me to my lectures. She has brushed my hair when I haven’t been able to sit up, she has comforted and encouraged me and I will never find the words to thank her for it and easily see how without her help I would also become trapped and defined by my disease, too scared to try and beat it because I simply don’t have the energy to.

My illness, like most ME varies wildly in severity. I can get very well, very active now I have learnt more about managing the illness, but then if I overdo things, and sometimes for no reason at all, the relapses keep on coming, rendering me severely disabled and limited physically and mentally (ME seriously f**ks with your cognitive processes). Still in my mind I always hope that ‘this time next year’ things will be different, I will be able to live without monitoring my every move quite so carefully, I will manage to get some of the last 10 years back. I have missed out on my family, my passions, and whilst trying to live a full life, it’s been a half life.

The most commonly prescribed treatments for ME are graded exercise, pacing and CBT (Cognitive behavioural therapy). I somehow combine all 3 into my lifestyle in order to make the most of my life. I will talk more about my thoughts on these treatments another time though.

My breakdown when I was 19 was the turning point in my understanding of ME. I was stressed to breaking point throughout my A Levels. My physical and mental faculties were exhausted. I ended up in a psychiatric hospital and had to build my life from scratch. Literally. I couldn’t cope with the stress of even the smallest decisions and had to make lists of everything I had to accomplish each day - brushing my teeth, cleansing my face, everything. It was only then that I found a good psychotherapist who taught me how to accept my illness and how to cope with it better and life since then has been tough but fuller in every way as I juggle my disease with trying to live as full a life as possible.

So - that’s a quick round up of the last 10 years - it is all business this post I’m afraid, things that I felt needed to be told until I discuss different aspects of the illness. I promise a more thrilling posting with punches packed everywhere tomorrow!

Intro

Sun, 18 Mar 2012 18:28:30 +0000

So to get things started, in 2010 I wrote an ME blog, much of which I was really proud of. So, the first few posts of this blog are going to be my favourite picks as they introduce the illness in my words how I wanted to in the first place. Here’s the first…

SUNDAY, 25 APRIL 2010

First things first… ME what?

The most obvious starting place is to go back to basics and catch up for those of you who are a little confused by the modern acronym-philic world we live in. What is ME? The best concise answer I have found online so far is here at the ME research page.

This is what they say:

Myalgic encephalomyelitis (ME) is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities. Early reports dating from 1934 described epidemics of the illness (see Research Publications on ME epidemics for more information) — such as the 1955 outbreak at the Royal Free Hospital in London — but nowadays it is more common for endemic (sporadic) cases to be identified. ME is classified by the World Health Organisation as a neurological illness (International Classification of Disease 10: G93.3).

The cardinal symptoms of ME are profound, generalised post-exertional loss of muscle power (fatigability); muscle pain that may include tenderness and swelling; and neurological signs. Patients are also prone to relapses which may take the form of recurrences of the original systemic illness, or fresh episodes of muscle weakness, neurologic changes or well-defined cognitive problems. As with many chronic illnesses, fatigue may be present, but in ME patients the fatigue is post-exertional, often delayed, and quite unlike the ‘fatigue’ experienced by healthy people.

The cause of ME is still unknown, but there is unlikely to be one single causative agent. Several early epidemics appear to have been triggered off by an outbreak of an infection with enteric organisms or poliovirus which then subsided, and many patients report an infectious onset to their illness. However, in others, there may have been a variety of contributing factors — infectious, traumatic, environmental and endogenous — all of which can lead on to a condition which shares a set of common symptoms.

Why do some people use the term ME/CFS?
During the 1990s, the term ‘chronic fatigue syndrome’ (CFS) came into vogue. Since there was no specific diagnostic test for ME, and since post-exercise ‘fatigue’ was one of its prominent symptoms, people with ME began to be diagnosed with ‘CFS’. In recent years, however, there has been a growing recognition that the diagnosis ‘CFS’ — based on a list of vague non-specific symptoms — is so broad that it encompasses a range of diverse patient groups. A recent revised Canadian definition has suggested that people with ME be recognised as a separate subgroup of CFS. At present, efforts are being made to remedy the diagnostic confusion and meanwhile the term ME/CFS is frequently used (see ME/CFS: A research and clinical conundrum for more information). Of course, none of this alters the fact of the illness for thousands of people, and the lay term ME is still used by patients, patient groups and charities (including ME Research UK) to describe the illness affecting people diagnosed with ME/CFS, including that subgroup of ‘CFS’ patients with an organic biomedical illness, neurological signs and symptoms.

Some key facts about ME/CFS
It is a real, often relapsing, debilitating illness, affecting up to 150,000 people in the UK, with similar rates of incidence in Europe, USA, New Zealand and Australia.

ME is recognised as a neurological illness by the World Health Organisation.

A report to the Chief Medical Officer of England in 2002 stated that ME/CFS “is a genuine illness and imposes a substantial burden on the health of the UK population. Improvement of health and social care for people affected by the condition is an urgent challenge.”
Studies have shown that most sufferers are unable to work to full capacity, and that 25% are severely disabled with some house/bed-bound.

Characteristic symptoms include muscle pain with physical and mental exhaustion following normal activities; quite different from what is normally experienced by healthy people.
ME/CFS has a huge impact on the lives of families and carers, but little, if any, support is available to them. ME/CFS also affects children.

The cause is still unknown, and no cure or effective treatment has yet been found.