Tag Archives: hope

Unadulterated Relief

As a teacher I have spent my career trying to instil in students a sense of the importance of respect: respect for each other, themselves and the world around them. I try and teach them that respect does not have to be earned. They should assume that everyone deserves respect from the off. If they live this way, then nobody will feel ill treated by them and respect should come back their way.

Since becoming ill, I have had to consider whether reality matches the ideal that I preach daily. Unfortunately, not everyone understands this basic human right of respect. Today’s blog is not meant to be a moan however but a celebration.

Yesterday I cried, I cried and I cried and I cried. The sort of hysterical tears that you can’t control as much as you want to. For once these were not tears of frustration, pain or anger but of sheer unadulterated relief.

Relief that somebody who understood M.E. deeply had shown me some respect. As always with this illness you have to go it alone, you can’t just sit back and assume the medical profession will guide you appropriately. In my search for my right to informed, respectful medical treatment I came across the National M.E. Centre. A charity that offers a free support service to patients suffering from M.E.

Yesterday Sue, a support worker, called. It took a few minutes to lower my defensive guard, a guard being built up by the lack of understanding about what is wrong with me by those in the medical profession. I don’t doubt those I have come across so far mean well (though maybe not idiot consultant) but I always fear that a lack of understanding could led them to suggest inappropriate treatment. Her specific questioning, the time she took to listen to my responses and clarify what I said forced this guard to just fall away.

She was kind, caring, realistic, human. More importantly she understood. I have never doubted that I have M.E. – I can tick off most symptoms on the list. It is only when somebody who truly understands the illness says you have it, that you can be sure. This was a relief in itself.

Not everything she said was good, there are realities to face that I didn’t realise I had to. She made me trust her however and this trust means I don’t have to face these realities alone. She is sending me information and will call again in two weeks to support me further. The knowledge that there is now somebody out there who gets it, who has lots of experience with M.E. gives me hope, hope that with their guidance I can begin to make progress, I can begin to stabilise and find a way through the myriad of symptoms and potential treatments.

Far beyond her practical suggestions, her caring yet professional support is what has filled me with this hope. Little does she realise that she has also brought relief to my husband and my parents. They have been desperately searching for a way forward for me. While I am not foolish enough to think that there is now a guarantee I will get better and get the service I need, there is at least someone there who understands.

Now I feel my fight for access to a pain clinic, a proper M.E. consultant and an occupational therapist is backed up by somebody’s professional opinion. I will still have to fight and there is no guarantee I will get to see any of these but at least I know I am fighting for something worthwhile.

So today my positive thought is – having experienced the deeply emotional impact of being respected yesterday, today I must ensure that I don’t judge people, until I know them. I must respect the fact that I don’t know what makes them the way they are. Equally, I must fight for the rights of others to be respected. It appears just a tiny bit of genuine respect can have a far greater impact than I have ever realised.

The National M.E. Centre

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Nobody’s Children Adopted?

If you haven’t read yesterday’s blog, you might want to read it (below) before reading this one.

Yesterday after publishing ‘Nobody’s Children’ I received an amusing (but accurate) email from a family friend, Victor. I’ve always called him my adopted Daddy and I think he is quite upset by the lack of understanding of and treatment for M.E.

His email:
I read about your latest NHS encounter, became emotionally involved, defensively I then switched to analytical mode and came up with this:

That UUP ‘Specialist’ you met deserves almost as much sympathy as you do. Put yourself in his position! There he was, all full of confidence in his knowledge and expertise in his speciality, framed certificate on the wall to prove it all and suddenly, OOOOPS! He is confronted with something he knows absolutely nothing about; your ME.

Like a plumber dispatched on an emergency call-out who finds himself being expected to deal with a house-owner’s heart attack. Any average plumber will have the wisdom and good manners to declare his ignorance of the coronary technology required, decline the job and pass on the responsibility to someone better qualified. That was an attitude regrettably absent during your consultation, although vast, reverberating, dark caverns of slimy ignorance were clearly in evidence.

But the really BIG mistake was not made by the unfortunate ‘Specialist.’ He was clearly Unfit for Purpose in the circumstances, exactly like the plumber who was sent to the wrong address. But that wasn’t the plumber’s fault. BLAME the DISPATCHER or matchmaker or computer operator or whoever else it may have been who arranged for you to meet THE WRONG PERSON who happened to be UUP (UTTERLY UNFIT for PURPOSE).

If the matchmaker/ dispatcher doesn’t know the difference between ME and a JCB, and gleefully clicks selection boxes on a computer screen that ensures a balanced workload for all classes of medic, regardless of suitability, surely that is the area that needs urgent attention in the NHS?

My reply
Oops! I am the UUP!!! Nobody could tell me who to see so I worked out who was closest to me!!!

His response
Rubbish! How can YOU be the UUP? The system failed you, so you tried to DIY. Good on ya!

It made me think, that ultimately until we understand enough about what causes M.E. and importantly this information begins to trickle down to the doctors (though ideally in a well-structured, efficient education program for GPs, physios, occupational health, consultants, nutritionists, psychologists and psychiatrists amongst others) there will remain only a few specialists out there who are FPs (Fit for Purpose).

Stanford, March 19th 2014, may well have seen history made for ME/CFS patients. An international symposium of M.E. experts yesterday presented to a standing room only audience the key findings of a wide range of studies. These finally make it possible, that with just a little further research, an understanding of causes and treatments will be found.

ME/CFS is a multi-system disease, it is far more complex than many diseases out there. This is reflected in the wide range of papers presented yesterday.
1. Daily fluctuations of Cytokines
2. Gene expressions
3. Cardiovascular Aging
4. MRI findings
5. EEG studies
6. Medical care of patients
7. Inflammatory and Autoimmune profile
8. Microbial diagnostics and discovery

A wonderful man, Cort Johnson, a journalist who has set up various high profile M.E. websites (e.g. Phoenix Rising / Health Rising) and an M.E. patient himself for 30 years, spent 5 hours Tweeting the key findings as they were presented.

I am no medical expert and I struggled to follow much of what was said but I do understand people’s reactions to this event and more importantly those of the real experts (the FPs). Through his Tweets the ground breaking nature of this symposium became incredibly clear. Phrases such as, ‘high hopes’, ‘convinced that inflammation is the key’, ‘ME/CFS is the last big disease to make your name in’, ‘it is an inflammatory disorder’, ‘the most amazing MRI presentation I’ve ever seen’, ‘a very strong result’, ‘bingo’, ‘ME/CFS is going to teach us so much about the brain’, ‘landmark study’, ‘staggering results’, ‘ME/CFS is not a psychosomatic disorder’, ‘sense of urgency’.

Various presentations also mentioned how many of their research programmes were ongoing and expected exciting results in the next few months. Many mentioned that they thought that soon there would be a real understanding of its causes and even possible treatments. Many, however, also mentioned how lack of funding made it a struggle to do.

How many out there, if they have heard of ME/CFS would say, “oh, you mean like Yuppie Flu”? The media has spent decades (largely dating from the 1960s-70s) stigmatising M.E. The psychiatrists colonised it for their own end, accusing the patients of being depressed or crazy or the like, based on little or no empirical evidence. If you can’t explain it in empirically, then it must be in your head theory.

The people who knew this stigmatising was wrong were in the weakest of positions to fight back. I currently could probably walk for 10 mins at a push and I am healthier than some so how do we march in protest? How do we force ourselves onto Talk Shows and into government offices until somebody will listen? The answer, most of us can’t, at least not very easily. So we depend upon the healthier amongst us and people who have never had this illness to fight for us. We are not an ‘attractive’ illness however, we are the ugly girl at the party that the other girls won’t play with. We come with a false stigmatism, a deep misunderstanding among many in the medical profession. We are not the go to research area. We are not glamorous and apparently groundbreaking enough. (Seriously is the above not groundbreaking?!)

Which group experiences on average more pain? M.E. patients, spinal cord injury patients, patients with chronic pelvic pain or muscular dystrophy patients? Wrong – an M.E. patient. Would the public be happy to ignore those other ailments, would they allow those patients to be told “it’s in your head” – good god no! They’ve worked out causes for the other illness, they have empirical data. Well so do we – almost.

The latest fad on Facebook is the makeup less selfie for cancer. As my friend put it, that doesn’t do much good, raise money instead. While I am in total agreement with her, how easily could I get thousands of people doing the same thing for M.E.? How many schools would have non-uniform days for M.E.? Like I said, we are the ugly girl at the party.

So what can we do – we from our beds can do little but use our words to fight for our corner. Others, friends, carers etc can do more. Help us to be adopted so that we are no longer Nobody’s Children.

I have listed below organisations you can make donations to, mainly UK based. As this blog is read around the world, if you know of others let me know.

Do something so that M.E. patients no longer cost the US in earning and spending losses alone, $18-51billion (£11-30b) a year and the UK, £102 million ($168m). M.E. patients tend to be the strivers, the driven, the ambitious. Do something so their intellectual wealth can benefit your country.

UK
Invest in M.E.
Walk for Me – raise money by doing a sponsored walk for me
Biobank – researching a cure for M.E. London School of Hygiene and Tropical Medicine

US

Donate to Stanford ME/CFS research

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The Danger Zone

First off, I must apologise for not writing yesterday. Yesterday was a bad day; in the morning I lay in bed unable to get up wondering whether this was it, was this the moment I became bed bound. It wasn’t though, I rose after a few hours. I was, however, unable to write.

Was this the danger zone? The moment where I feared being unable to get out of bed? I don’t think so. The danger zone is far more benign looking than that. It is so sweet and innocent and relief bringing that it is so very, very easy to forget that it is the danger zone.

The real danger zone, the one where you need MI5 and MI6 to watch out carefully for all signs of potential attack, is a good day. All over the M.E. world I suspect carers and patients are firmly nodding their heads in recognition of this. Those who have never spent time with someone with M.E. may on the other hand crinkle up their forehead in confusion. Why would a day where you feel good be dangerous? Why would it not be a day you luxuriate in? Well yes, we do luxuriate in them but they also scare us.

Post exertional malaise or post exertion relapse (or indeed any of it’s other names) is the spectre that haunts us on good days. Somebody recently described themselves as an energiser bunny on a good day. All they want to do is buzz around the place doing everything they can’t do on a bad day. Cleaning the house and having a shower seem to be close to the top of the list! (Who would have thought that M.E. makes you dream about cleaning the house!). Meeting friends for a drink and staying up late are also high on the list.

Post exertional malaise (PEM) is something everyone has partly experienced. We’ve all been on a wonderful long walk and woken up the next day unable to move. Your muscles have built up too much lactic acid (I believe!) which causes you pain.

The problem if you have M.E is that you build up at least three times more lactic acid than the average person. Plus your anaerobic and aerobic thresholds are significantly lower than a healthy person. As a consequence, it can take very little exertion for a patient to suffer from PEM. For some, it can be as little as sitting in a chair by their bed for 5 minutes. For me, it is any form of mental activity or as simple as sitting doing a jigsaw puzzle for too long.

The PEM twist is of course that it doesn’t just lead to aching muscles but also brain fog (the days where we seem crazy or stupid!), intense fatigue, heart palpitations and for some emotional fragility (I suspect due to just feeling pants!). So the price you pay for stepping into the danger zone can be very high. For some PEM can last for a few days, for some weeks.

On a bad day, it is easy to not do too much – we feel so pants that we can’t really over do it. On a good day it is so easy! Every morning I must plan my day to ensure I don’t do too much. I can’t just hop out of bed and see what happens.

My life is based around activity points (imagine a Weight Watchers system). I’m no expert at pacing and I have had no specialist advise on what to do. This is a cobbled together plan by reading lots and getting advice from my mum and husband. It constantly is adapted as I try and create a pacing system that works for me.

I’m allowed 12 points a day. So on a good day what can I do: shower – 2 pts, 3 x 5 min walks – 4.5 pts, make lunch – 1 pt, write my blog – 2 pts, stretches – 2 pts. Total – 11.5 pts – I try and leave a little behind for unexpected activities (e.g. a telephone call). Look again at my day – how much do I achieve? Do you see any socialising? Do you see any hobbies other than my blog? If I want to do these things, something must go.

I want to meet friends for a drink in the evening for 40 mins in a pub 5 mins walk from my house. How do I do it? Don’t walk during day – saves 4.5 pts, don’t shower (fun when you are going out with friends) – saves 2 pts, don’t do stretches – saves 2 pts. I must eat lunch though and I enjoy writing my blog so that means I keep 3 pts.

So I have spent 3 pts out of my allocated 12, leaving 9 points. Walking to and from the pub will take 3 pts, leaving 6. A pub is a noisy place: lots of talking and music. A pub is also a busy place: lots of colours and people and different activities going on. Plus of course all the socialising with my friends. So my 6 points isn’t enough for 40 minutes. This is an 8 point activity. So I have to go into activity debt. Tomorrow I will have only 10 activity points to withdraw from. As it is, using those 2 extra points may be enough to result in PEM.

So on a good day we try and work out how to enjoy ourselves, get on with life but not do too much so that we end up in the danger zone and consequently experience PEM. We can never fully relax and forget about our M.E. no matter how good we feel.

So when you see us out and about – it is a good day but in our brain we are trying to balance whether it is worth it to spend that extra 2 mins to walk to our favourite shop or whether the enjoyment that brings will not be worth entering the danger zone for.

Despite all of this, a good day brings me a real sense of relief and plants a seed of hope that this is the beginning of recovery. So while recognising it is the danger zone, I can still enjoy it.

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Surprise, Surprise!

Being Irish I never new the Cilla Black version of Surprise, Surprise – I only know the Holly Willoughby version. I understand the concept hasn’t changed though. People go to the show expecting one thing to happen and they are utterly surprised by what happens in reality!

Sounds extremely famililar! I’ve constantly being surprised by what surprises me with my M.E.!

Sometimes it’s little things like did you know Epsom Salts are meant to help reduce muscle pains? However, that’s not the surprise – added bonus: makes your hair very shiny and soft – now that you can’t complain about!

The washing machine is not the bin; therefore, the empty cat food box won’t go in it! That was on a brain fog day!

I’ve been surprised how at random times, I forget how to do random things but only for random durations of time! At Christmas I tied lots of bows on Christmas presents then randomly didn’t have a clue how to do it on the next present! I sat there desperately trying to work out how: aware that I had the skill! Almost in tears I gave it to my husband to do! Seriously, what was going on there!?

I’ve also been surprised by more serious things. It only took weeks for my very career focused attitude to change. I’m the Head of English in a school (despite not having worked for 5 months) and have always been very driven about climbing the career ladder. Just weeks before getting sick, I had already had an interview for a Deputy Headship and was just about to apply for another. I wanted to be a Headteacher in 6 years – it took only those few weeks for me to decide that wasn’t important, it would happen if it happened. I feel all the happier for that.

I’ve been surprised at my ability to deal with a potentially life changing illness. I always looked at those people who became ill and dealt with it in awe, either dealing with things is easier than I thought or maybe I too am awesome!

I’ve been surprised by colleagues. A colleague at work who only started weeks before I went on sick leave contacted me to send me some information she had found about M.E. that she thought would be useful. That touched me deeply. Others who I felt I had been close to, haven’t been in touch at all. Their lives have gone on and I’m not part of it – that shouldn’t surprise me at all.

I’ve been surprised by the success of this blog both numerically and emotionally. It is still in its first ten days but over that time it has been read in at least 15 countries including: Nepal, Korea, Malta, Germany, Norway, Sweden and The Netherlands and it has been viewed over a 1000 times!

It has also surprised and heartened me that so many people have felt my words have resonated with them. That I have been able to a certain extent reflect their own experiences and make them feel less isolated! I’m surprised that little old me is capable of that.

Don’t tell my students but I’ve been surprised that the English skills I’ve been teaching for the last 4 years have improved my own writing skills! As I write, I can hear my words to them in my head and I hope this comes out on paper. I’ve surprised myself by how much teaching English has taught me!

I have been surprised by how much I hate asking for help! I referred to independence in yesterday’s blog so won’t go into too much detail here. Seriously though, who would have thought asking someone to make you a cup of tea would be so emotionally hard!

Mainly I’ve been surprised by how quickly your life can change. How things you took for granted are no longer guaranteed and things you never considered before become central to how you live your life.

Not all surprises are good ones and not all surprises make you happy! Today I’m not surprised to have woken up at 5 unable to get back to sleep, I am however surprised at just how shiny and soft my hair is after my Epsom Salt bath last night!

Who needs a Holy Willoughby ‘Surprise, Surprise’ when you can have M.E. 🙂

What makes us strong?

I was going to try and improve this, this morning, I don’t like how it reads but I’m not going to. Firstly because it was written when I didn’t feel great, by not changing it, you are seeing me on a bad day. Secondly, I feel worse this morning so I can’t!

Tonight, I’m tired and stiff and sore, I’ve had a sore throat and headache all afternoon and my brain is in a fog. I spent all afternoon lying on the sofa, fighting the urge to go to bed. I tried to read but can’t. I suspect this blog will be finished in the morning, I can already feel my fingers beginning to become painful and my headache worsening.

It is on days like today that it is so hard to remain positive and see happiness in what you’ve got. However, let me review the good things about my day:

1. My mother and father-in-law are looking after me (and my two cats) as my husband is going abroad on business tomorrow: I don’t have to look after myself alone.
2. My good friends Charlotte and Phil took me to the sea, bought me a cup of tea and let me spend time with their lovely son, George.
4. George asked to hold my hand while we walked back to the car.
3. My in-laws were out all day but my father-in-law left me a yummy stew for dinner.
4. My cats came and spent time with me throughout my day on the sofa.
5. My friend, Shelly, asked me if she could come and see me tomorrow despite it being a 90min drive and there was no guarantee I’d be able to see her for long.
6. My mother-in-law brought me tea in bed this morning and this evening.
7. My husband took my much under used but much loved Mx-5 for a drive so that the battery didn’t die.

That is just one day and not a particularly remarkable day. Perhaps some might think each of those little events mean little but put them altogether and they provide the strength you need to deal with the bad days.

I’ve been lucky, I’ve been surrounded by nothing but love and care since all of this began. My mum spent ten days with me the last time my husband went away, my dad researches treatments and regularly emails them to me, my cousins have sent me numerous caring messages, friends from all over the world have expressed their support and strangers I’ve never met have given me their time and energy (much limited) to share their M.E. experiences with me so I don’t feel alone.

A chronic illness doesn’t effect just one person, it effects all those around you. Each person has to do one thing or many things differently to cater for the needs of the chronically ill person.

For me, I don’t think I will ever know how my family / friends feel about my illness in reality, they are always supportive and always willing to help out. Yet it has disrupted their lives, there must be times when they get sick of it, when they would rather not finish cooking dinner for me because I got too tired or drive hours to collect me to bring me somewhere because I can no longer drive. This is a weight that they bear and it must be hard but their support helps to fill me with strength and helps me through the tough times.

For all chronically ill patients, I guess there is one primary carer. For me it is my husband. Over the last six and half years that we’ve been together, we’ve have gone through so much. I always thought we were strong, we must have been to get through them but now ill health has shown just how strong we are. His constant love and support (though I do have to remind him to vacuum!) enables me to do what I need to do to keep going, he enables me to remain positive. He makes me feel that no matter what happens to me, there will always be an ‘us’ fighting it together.

It is so easy to forget about the chronically ill – we are boring company at times, we can’t always guarantee we will follow through on our promises but remember you are part of their foundation of strength, you are essential to a chronically ill patient. Remember too though, we might be ill but we can, in our own way, be there for you too – we can be part of your foundation of strength.

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Sometimes you’ve got to just scream and bawl your eyes out!!!

Everything I’ve written so far has been, I hope, very balanced and positive. But let’s get real here. Just over four months ago I was applying for Deputy Head jobs, we were looking for a new home and planing a trip to Iceland so I could fulfil my dream of going there and riding an Icelandic pony.

Now, I don’t know if I will ever work again, we can no longer as a consequence afford the dream home we wanted and Iceland is out of the question given I couldn’t manage a night in Cardiff! So yeah, every now and again balance gets thrown out the window and anger and frustration takes hold – what normal person wouldn’t feel that way in my circumstance!?

A few days ago I came across a woman called Louise Harding* who is putting together a book of letters from M.E. sufferers. Initially the idea was for people to write a letter to somebody who they felt had treated them badly or misunderstood them e.g. a GP. The idea has now morphed into a letter to anyone or anything including the illness itself.

I decided to spontaneously write a letter, sending her whatever came out through my finger tips. This is my letter.

Dear World or whomever this is suitable for!

I get so angry with you sometimes, why have you given me this thing that I don’t understand, that the world doesn’t seem to understand? I want to know what it is that makes me feel this way, I want to be able to slap it across the face and say how bloody dare you! What gave you the right to do this to me? Who the hell do you think you are?

There is no point in being angry with you though is there? There is no point in trying to find answers that just aren’t there. I’m in the situation I’m in because I’m in it and for the moment I can’t change it.

I will fight this, don’t think for a second I won’t! I’m going to keep on enjoying my life, even though I will pay for it physically when I do.** I will continue to love all those around me who show me such boundless support and I will ignore those that don’t.

This is an opportunity, I will not let this destroy me life, I will only let it point me in a new direction.

So yeah, sometimes world or whoever the hell this should be directed at, I cry, so what the hell does that matter. Most of the time, I stay strong and I try not to let M.E. define me.

You go annoy somebody else, I’ve had enough of you now,

Karen

I could worry about feeling this way, I know my husband and family do. I know how distressing my husband finds it to wake up in the middle of the night to find me crying my eyes out. I know he worries that I get more upset than I show him (actually not the case).

On the otherhand, isn’t anger just a stage in the grieving process? Surely, it is ok for me to grieve the life that I have probably lost forever – for even a clean bill of health will make me reflect differently on my life. Surely without anger it would not be possible to deal with the great changes in my life.

I’m lucky though, not a member of my family or my friends are unsupportive. I have someone to share my feelings with. I don’t have to internalise my anger, I can express it freely. More and more I find I have dealt with it, the anger is subsiding although it still rears it’s ugly head sporadically! I suspect my husband wishes it didn’t always rears it at 4 in the morning!

Hmm, maybe even in anger I can find balance and positivity!

* If you have M.E. And want to write her a letter, contact her at this address: looby_louness@hotmail.co.uk. All profits from the sale of her book will go to Invest in M.E.

** I of course do try and pace myself and my saying I will enjoy myself even though I will pay for it – that’s not advisable 🙂 I plan my times to enjoy myself, in order to minimise its impact. In reality, I should avoid all occasions where I might later pay for it! However, I believe to do that would have an emotional impact on me greater than the physical impact. Many may disagree! It is a tightrope all sufferers have to traverse.

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Oh I think I have it too! Heee, heee!

Opps this is a long one 🙂

Twice in the last month good friends when I told them I had M.E. had never heard of it. Fair enough English isn’t their first language. When I then said sometimes it’s known as Chronic Fatigue Syndrome* thinking they may have heard of that, they responded with, “Oh I think I have it too! Hee, heee!”

The other day my curmudgeonly neighbour said to me, “I hear you’ve been ill.” “Yes, I have M.E.” “Have you had a few weeks off work then?” “No, I’ve been off for four months!” “It’s not that you can’t be bothered going back to work then, hee, heee!”

When I first went off work after two weeks I tried to return, just doing two hours a day. I had heard that some people had been bad mouthing me, saying that, “we’re all tired, she should just go to bed earlier!” One lady completely blanked me, I purposefully said hi and she walked on by me. She was disgusted with me for being so lazy! Yes, those that know me – lazy! I only used to work 11 hours a day having cut it down from 12+ as I didn’t want to burn out!

The first three people were just examples of ignorance. How many people you know could tell you what M.E. is? My two friends are fabulous and would be horrified if they knew that their comment made me feel quite raw. The last example is also ignorance compounded with plain rudeness!

Ignorance about M.E. is to be expected. It is the hidden disease that rarely shows it’s face. If you’re meeting somebody with M.E. outside of their home, you’re meeting them on a good day and you possibly wouldn’t even notice that something was up. On a bad day, I can only drag myself to the sofa, on a really bad day, I can’t drag myself out of bed!

I’m lucky that I only experience mild to moderate symptoms – I’m very aware that there are people who suffer significantly more than I do. There is a scale for assessing the severity of your M.E., I think I’m roughly 38% as active as I used to be pre-M.E. and this is a huge positive – I could be 37% worse!

So how does M.E. affect me: fatigue, headaches, muscle pain, joint pain, appalling sleep, pins and needles, frequent urination, stiff and painful joints in my hands, pain in eyes and blurred vision, sensitivity to noise, back ache, neck ache and random others that come and go for no apparent reason. I don’t get all of them all of the time and they are not always debilitating, sometimes it is just a dull pain in the background.

By far the most debilitating aspect is the fatigue – this is definitely moderate to severe always. Do you recall a night out that probably started at lunch time the day before – you drank, you walked miles to different pubs, you danced all night? Do you remember waking up the next morning, feeling so tired you couldn’t get out of bed? You doze all morning and yet you wake up feeling no better? Well that’s me or M.E. I’m not that bad all the time but it does always feel like that languid hangover dullness and exhaustion to one extent or another.

There is a fundraising campaign at the moment for an organisation called Invest in M.E. There is a group selling t-shirts that show an empty petrol gauge and the slogan ‘running on empty’.** It feels like I’m never able to get that gauge above empty yet I still need energy for my pure existence.

If I don’t pace myself and plan out all my activities for the day the consequence of that gauge running completely on empty is really frightening especially if I’m not at home.

Last weekend we went to Cardiff just for the Saturday night. I hadn’t really left the confines of Stratford since early January and was desperate to see a different world. We thought we were being careful. We broke the trip half-way to get breakfast so I didn’t stiffen up too much; I rested when we got there; we went out for a coffee and a little walk around (20 min walk with coffee and various other stops); I then rested for two hours before we went out for food at 4 p.m. We ate dinner and then decided to go to the cinema. This was going to be the longest I had without being able to rest for months – 4 hours out of hotel.

About an hour into the film I began to feel the usual signs that I’d done too much – a fog descends and pain levels increase. I was a fool and stayed, it was the first time we had been out like this for months, it felt like a date and I didn’t want it to stop. By the end of the film I was in a state of near collapse.

Under normal circumstances the hotel was no more than a 2-3 minute walk from the cinema – it took us at least ten minutes. I needed to stop every couple of steps to get my breathe back and rest. My entire body was in agonising pain and I was fighting not to burst into floods of tears. Chris effectively had to hold me up. We always joke at this point that others must think I’m absolutely drunk out of my head and at only 8.15 as well!

We eventually returned to the hotel and I went to bed, aware that my poor pacing would now lead to a four day recovery pattern – these days it’s always the same. Day One – collapse and get to bed; day two – in bed all day (though this time we had to drive home too – fun!); day three – out of bed but not able to do much but sit on sofa and make basic lunch; day four – able to leave the house and walk to town (0.3 miles) have coffee then struggle home and then on sofa for rest of day. By the next day I’m back to normal whatever that actually is!

This is probably quite shocking for people who know me or people who know nothing about M.E. but remember I’m one of the lucky ones. I get to leave the house at least 4 days out of 7, I’m not bed bound, I don’t need crutches or a wheelchair, I can wash myself and dress myself, I can feed myself.

I wrote this not to get attention or have people feel sympathy for me, far from it. I simply want people to know the reality of M.E. I want to unearth this hidden disease, I want to reduce ignorance about it so that at least you the reader never make a throw away comment to a sufferer that hurts them through ignorance.

* yes! I know that some people say it’s different but the Canadian Consensus Criteria doesn’t.
** to buy a t-shirt go to http://www.mamachill.moonfruit.com

What has happened to M.E.?

138 days ago my life changed completely! Has it changed forever? Yes. Will I ever think the same way about my life, about what is important? Not a chance.

138 days ago I travelled from my home in Stratford upon Avon to New Milton in the New Forest to celebrate my father-in-law’s 65th birthday. I had begun to feel grotty during the day but hey I was a teacher and it was only October, plenty of those new kids’ illnesses to yet become immune to. By the time we got there all I could cope with was a lemsip and a cup of tea. Dancing seemed out of the question (and I love to dance!)

An hour and a half after getting there, we went back to my in-laws. I went straight to bed and straight asleep. The next morning I felt pants. I got up about 11 having slept through the morning, stayed downstairs briefly then was forced back to bed. Shortly after, my husband woke me up to say we were going home, I was too ill not to be in my own bed.

I don’t remember the drive home. Apparently I fell asleep within minutes and slept all the way to Warwick services. My husband, Chris, decided if I was sleeping this much then there was something seriously wrong, he stocked up on as much lemsip as he could and drove me home.

I slept all Saturday afternoon and all Sunday. I struggled through work on Monday, buoyed up on lemsips and on getting home went immediately to bed. I couldn’t cope with work Tues but felt I had no choice but to go to work on Wed. It was a Year 4 Open Evening and as Head of Department I felt it was my duty to be there.

What a fool I was! The receptionist kept me alive by feeding me lemsips bang on every four hours. By 7.30 having spent more than 12 hours at work , I didn’t feel bad, actually I think I was high! The next day I couldn’t make it in, I could barely get out of bed. I managed Friday at work but only just.

The following week was half term, I was exhausted but it was half-term, I had just been ill! Being tired made perfect sense.

After half-term however I began to worry, I was continuously tired, I just couldn’t cope. My marking went to pants, my planning was a real struggle. I found it very difficult to follow complex conversations and felt really emotional.

I had always started work at 7 and kept that up but noticed I had to sit in my car for 10 mins just to get over the drive, some mornings I cried. Instead of leaving at 6 every evening, I started leaving as soon as possible after the kids went home. This wasn’t me and I was beginning to get concerned.

The Sunday evening of Nov 17, 2013 everything finally really changed. I ended up in Warwick out of hours GP service because it felt like I was having a heart attack. All tests came back clear, there was nothing wrong with me.

To this day, there is still nothing wrong with me – at least according to the tests. Reality however couldn’t be more different. I, who always worked as hard as I could, haven’t worked since Nov 15th. I tried, I really did but it was a disaster.

So my question was – what had happened to me? M.E. had happened to me.

I have never written a blog before and I don’t know if M.E. will let me but if it does I hope it is cathartic and perhaps one person will read this and see part of themselves in it and feel slightly less alone. If they do, perhaps I will feel slightly less alone as well.

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