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Nobody’s Children

Many years ago when my husband was in the army and he was yet to be my husband and still only my live in boyfriend, he was instructed to move camp. As part of moving camp they would pay for a moving company to come in, pack up HIS house and move HIM to Dorset. They would move up to one large lorry.

On discovering however that he lived with someone and was unmarried, they refused to move US. This was despite our combined flat contents being significantly under the capacity they were prepared to move for HIM alone.

He spent many hours trawling through the army regulations and discovered that as long as our contents was not over his individual capacity (rather than married couple capacity) then they had to move us! I remember at the time we thought how if you didn’t have the education, the time or confidence to investigate then you would have to pay for the move yourself. We discussed how the system had the power to make an individual’s life excessively difficult.

I always find this upsetting when society limits somebody’s abilities purely because ‘it’s the system!’ I felt this way again yesterday. I consider myself incredibly strong willed, confident and able to defend myself. I cried yesterday however because I felt so abandoned by the NHS system.

Having waited 3 months to see an ‘M.E. consultant’ (notice the inverted commas – he was an Infectious Disease specialist), I finally went to see him yesterday. I wasn’t expecting miracles, just guidance and support. I wanted to make sure that what I was doing was the right thing and guidance on where to go from here. I wanted him to perhaps suggest, based on the severity or not of my symptoms, what my possibly timeline was.

I walked away from the appointment in floods of tears, barely able to stand due to sheer exhaustion and stress. I have never felt this way before and I am strong.

I won’t go into too many details (check out any M.E. forum if you want to know how horrible these appointments can be!). Suffice to say he never asked me about my symptoms, I had to shove them in his face, pointing out my symptoms record (this appeared to be highly bemusing to him).

He seemed to focus on my stress levels (clearly thinking I was depressed or such like!). He informed me I should have gone back to work earlier although I had been trying to tell him some days I could barely get out of bed, I couldn’t drive and I found ‘easy’ socialising for more than a half hour exhausting.

I walked away with no idea whether my system of pacing was any good, no idea how to build up my activity level, no idea how to deal with my pain levels. When I requested this information he spoke in generalities. Speaking to my husband afterwards, we both felt that he didn’t know the answers and was trying to get rid of me.

What upset me most afterwards was what I felt was his total rejection of my right to treatment and support. I pay his salary through my taxes so theoretically he works for me. I have the right to go to an appointment and be treated with respect.

Imagine though that you were not me. Imagine that you had to travel there on your own by public transport for an hour because you had no one to bring you. Imagine you didn’t have the self-confidence to say to yourself, ‘he’s an idiot, you are ill and you need to ignore what he says.’ Imagine if you as a result of your meeting assume that you’re not as bad as you thought so you return to work (driving) and ‘get on with your life as normally as possible’. The consequences of not standing up for yourself have the potential to do serious damage to you not only physically but emotionally.

The lack of specialist M.E. centres in the UK and the lack of a _ist specialism for M.E. means that patients see Infectious Disease specialists, Rheumatologists and Neurologists. There are many of these specialists out there who are great, on the other hand if you read the forums many of them lack the specific knowledge to provide sufficient support.

The lack of empirical evidence of the illness through run of the mill blood tests seem to result in some doctors not knowing what to do. This leaves patients alone, trying to work out how to deal with things themselves without qualified support. Somebody called M.E. patients ‘nobody’s children’. Nobody wants us and nobody can support us.

I have made an appointment with my GP and I will be requesting a referral to one of the M.E. services recommended by other M.E. patients. Would I have done this if I wasn’t able to have such a ‘screw you’ attitude? Is this an example of society favouring the emotionally and indeed financially strong (none of these clinics are local and may even require a hotel stay)? I think so and it upsets me.

I’m in a good situation where I am likely to recover as my support network is so strong. Those without this network daily have to go beyond the energy thresholds just to survive. These are the people who need the support of professionals most and these are the people who may not be able to add a fight for decent service to their energy expenditure. This upsets me.

Update: I have spoken to my GP. She thought my treatment was bad as well. She is going to refer me to a pain clinic and is going to try and refer me to an M.E. Clinic of my choice. Somebody in the NHS is good!

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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. 🙂

Needing to be independent

Until I was about 31 I couldn’t drive. I’d never needed to get my driving licence. Suddenly, we were moving to a town where without my own car my independence would disappear and I wouldn’t even be able to work. A mad few months of driving lessons, theory tests etc began. On my in-laws wedding anniversary, August 26th, I passed my test.

The first time I went out in the car by myself, it felt amazing, I felt free! Now my father-in-law has made a sensible suggestion but it is a suggestion that logically I agree with but my heart screams, “No!”

He has suggested I sell my car, I haven’t used it since November and it sits at the side of the road, depreciating. A car needs to be used or it starts to have problems and mine is not used often. So logic would agree, I don’t think I’ll be driving it any time soon so yes it should go.

Selling it however feels like it removes my ability to be free, to be independent. I’m one of the lucky ones, I don’t have severe M.E. so to some this worry will seem frivolous, they no longer worry about losing their independence because it is long gone.

However, I have already lost so much of my independence: I haven’t been in a supermarket since Janurary; I can no longer even walk into town for a coffee; I can’t plan my own holiday and then just wander aimlessly around when we get there; I can’t leave the house whenever I want and go for a long walk; I can’t spend a few days alone when my husband goes away; I can’t plan my career; I can’t spontaneously decide to do something social; and I can’t drive.

Selling my car feels like it might be the start of a slippery slope towards those that have lost total independence. It would only be a monetary decision but it feels like so much more than that.

For me, being independent was always a crucial part of who I was. At 19 I moved to London for three months, I did the same at 20 and at 21 I moved there to do a Masters degree. I knew nobody and had to create my own life, get a job, find a flat. At 24 I moved to Poland with accommodation for a few weeks but no job, no language, no bountiful money and only one friend. Each time I faced these challenges pretty much alone and revelled in my independence. I have always loved being around people but I’ve never really needed them.

Today, I’m faced with needing people, not just loving being with them. It is a challenge to deal with and this is one thing I haven’t quite dealt with yet. I hate to tell people that they need to bring me home because I’m tired now, I hate to tell people to get me things because I can’t do it myself. My greatest hate is asking my husband after his long day at work to do jobs at home while I have spent the day on the sofa: I hate that I can’t do it all!

When you read the M.E. forums this sense of dependence on others seems to have the greatest emotional reaction. People desperately need the support of others but crave their own independence.

When I was well, I never considered the importance of being independent. I never thought about my elderly neighbours, those who were unwell around me, those who through illness or age have lost their ability to be truly free.

I hope when I get well, I don’t forget what the reality of losing some (luckily) of my independence was like. I hope I do something to help others retain their independence. I hope I don’t become oblivious again to those that fear it’s loss.

Will I sell my car? I don’t know – I don’t think it is a decision I’m ready to make.

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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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I have a cure…well maybe not…don’t do that it will make you worse!

Imagine that you are a loving, caring parent of a well-behaved, hard-working child. You are worried though because school seems to be a real struggle for them, especially where reading and writing are concerned. You notice that they tend to mix up letters when they are tired and struggle to follow lines in a text. How would you feel? Angry, frustrated, worried, alone?

You probably have a feeling that the problem might be dyslexia but you’re no expert so you can’t be sure. You do what any sensible parent would do and make an appointment to see their class teacher.

Imagine then that the teacher, worst case scenario, tells you there is nothing wrong with your child, it’s all in their mind! How would you feel? Angry, frustrated, worried, alone ? Would you think maybe it is all in your mind or maybe it is your child’s fault? Why not, somebody more expert than you has made that suggestion!

What about best case scenario they say that they think your child is dyslexic and that the child will just have to deal with it but don’t give you anything practical to do? How would you feel? Frustrated, alone, confused, worried, angry?

So what would any good parent do when they hear that their child has got dyslexia? They would google it! Now imagine on googling it you read a description of what dyslexia is and it perfectly matches your child. You then read up on how to ‘deal with it’ as the teacher suggested; every website has a different suggestion and often these suggestions are met with derision or anger on another website. You spend hours researching and ultimately end up with no clue as to what you should do although you are determined to do something! How do you feel? Scared, angry, frustrated, confused, alone?

So you return to the teacher and say I can’t do this alone, I respect you are more of an expert than me but I need someone with more expertise than you. They are lovely about it and say they will see if they can find someone. Two weeks later you follow it up and they say they have spoken to everyone in the school and nobody knows an expert. How do you feel? Scared, angry, frustrated, confused, alone?

So, imagine you return to lovely google, it takes seconds to find that there is a state specialist in the next county, although there is nobody in your county. You think, I’ll be efficient and give them a ring so I know they are the right people to pass on to the teacher. They say they are but as you are in a different county they don’t have to take you on. How would you feel? Angry, frustrated, worried, alone?

You get the teacher to make the referral anyhow and wait in trepidation to find out if you will get an appointment. In the meantime you meet lots of people whose children have dyslexia and read treatment surveys that show the official state recognised treatments are recognised to make the problem worse and are not recommended by the real experts. They are treatments based on an old understanding of the problem that has since been disproved!

You further learn that there are treatments that help far more people (though no guarantee of a cure) but they are not available from the state. So now you know your much fought for specialist appointment, when eventually it comes, may actually make your child worse! How would you feel? Angry, frustrated, worried, alone?

You quickly realise the only way to help them is to try as many different treatments as possible, some costing a few pounds some thousands but none of them covered by the state. You are very aware though that these may help your child but reading treatment surveys, you are also aware that they could make them worse. How would you feel? Angry, frustrated, worried, alone?

If parents of dyslexic children were really treated this way, do you think it would be accepted? Do you think it would be fair? Do you think you could cope?

Replace the word teacher with GP and dyslexia for M.E. and that is the reality for all sufferers. Some of us, like myself, are lucky to have supportive GPs (even if they don’t know a lot) but far too many patients are accused of being depressed or anxious and that it is all in their mind. It is not unknown for people to be forcibly sent to psychiatric hospitals or children to be removed from their families because the symptoms are seen as a cry for help from an abused child, there are bed-bound patients who haven’t left the house in 5 years who haven’t seen a GP or a consultant in this time because they can’t leave their house and doctors won’t visit them.

How would you feel if that was you, your partner or your child? Angry, frustrated, worried, alone?

So what is needed? More invested in research both of the cause and a cure. An investment of £1 per patient per year in the UK is not enough to help 250,000 people whose lives are permanently on hold. People who could be income generators for this country, people who could add to the intellectual wealth of this country are being prevented from doing so because M.E. is not only a misunderstood disease but one that is unattractive for investment and for researchers.

I cannot solve this alone, my family cannot solve this for me – for the moment however I have no choice but to try.

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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

Owning up

Perhaps my first blog posting should have been this one but owning up to this thing continues to be so hard.

For the first month of being signed off work, I went out of my way to make sure people didn’t realise I had M.E. It wasn’t because I was ashamed about having it, no, I think I accepted it very quickly although I’m still trying to understand the reality of it!

I went to a wedding in Ireland 5 weeks into this thing: I couldn’t drink, I couldn’t dance, I struggled socially, I was in bed by 11. I hadn’t even told my family – my sister was convinced I was being moody and I should snap out of it. I don’t blame her – any normal person would have thought I was being moody!

I didn’t tell my family because I didn’t know what was going on and I didn’t want to worry them. I didn’t tell other people for so long because I felt I didn’t want to shove it in people’s faces. I felt that telling people about it was being self-centred, like I was looking for attention. I was desperate for people not to think this.

Initially I went out of my way to make sure nobody knew I was not working: I didn’t make phone calls, send text messages or emails or post on Facebook during working hours. I hated to think people would think me lazy – I had worked with enough Sick Notes as they became known, people who it seemed were off sick only because they couldn’t be bothered to be in work. I didn’t want anyone to think that that was me! It does make me reconsider my opinion of these people now!

Slowly I began to say to people: I have M.E. ‘at the moment’. I don’t think I had yet accepted that this thing could be long term. I tried to portray it to be like having a cold. A temporary thing that wouldn’t be around for long. A thing that didn’t need sympathy and didn’t need to be worried about.

I now say, I have M.E. which shows acceptance to a degree. I won’t let my illness define me however and so I don’t bandy about the term willy nilly. I now reluctantly but do say it in coffee shops when I can’t queue for my coffee and need someone to get it for me. I have told my estate agent so he knows to always explain things clearly to me. Slowly, I am letting it slip out on Facebook as and when not mentioning it would be hiding things from my friends. I still don’t believe I should let it define me and feel it would be wrong to always lead with it. I want people to see the Karen they have always known – I’m just a Karen who feels like she runs a marathon every day after a night out on the drink.

This blog I guess is my biggest declaration that M.E. has become an important part of who I am. It has taken (temporarily) my great love from me – teaching so I am going to use it to restart a love I had as a child and teenager – writing.

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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