Tag Archives: career

What Will Happen to Me? Living Life

For the more observant amongst you, you may have noticed that my blog title has changed. It is just subtle but it represents a fundamental change in my life. No longer does it feel appropriate to host a blog entitled, ‘What Will Happen to M.E.?‘ but rather it is now the slightly more appropriate title, ‘What Will Happen to Me?‘ The subtle omission of those two simple dots may pass by unnoticed by some but for me they’re deletion is a cause of great celebration.

In two weeks time, my husband and I will go to spend another weekend with his family: celebrating his father’s birthday. 12 months ago, this very birthday weekend marked the very beginning of my illness. An illness that was to throw myself, my husband and my family into a brand new and unexpected world of uncertainty, pain and fear. The gradual and then sudden disappearance of this world over the last few months is still a source of amazement and at times shock.

Where previously my blog title represented a sense of confusion over my future – a sense of loss, my new title represents an awareness that I am now in a position to do whatever I want. I have no idea what is going to happen now. I have no idea where I will end up living; what I will end up doing.

What drove me in the past, for the moment at least, no longer drives me. I no longer care if I become a headteacher, I no longer care if we live in a fabulous house, I no longer care about my husband’s career progressing as quickly as possible.

Without being melodramatic, in the last year I faced being bed-bound or at best housebound for the rest of my life. It is only by a combination of a miracle and my determination that I no longer face this. However, if I was to face this again, would I care that I’d become a headteacher if it meant that myself and my husband hadn’t spent much time together so that I could do the job? If I was to face this again, would I care that my husband had a brilliant career and earned lots of money if I knew it had made him miserable?

I have been returning to work on Monday afternoons for the last few weeks for staff training. Last week, we had training in a program called, Shut Up and Move On (SUMO). This program is all about how to be logical and balanced in your emotional reactions to events. One thing that was said that I felt clearly reverberated with me was that most of us live our lives on auto-pilot.

Day to day, week to week and year to year we live our lives without thought. We rarely stop and consider what we are doing, why we are doing it and whether we really want to do it. Prior to my illness, I would probably have denied that I lived my life in such a way. A year in which I stepped off the treadmill of life however has allowed me to reflect on the reality of what I was doing, why I was doing it and whether I really wanted to do it.

This year has allowed me to realise that I was living my life on auto-pilot: that much of my dreams and aspirations were ill-thought out or not thought out at all. Some of the things I did previously reflected perhaps a high-moral point of view – it was acceptable, for example, for me to work more than twice the hours (32.5) I was paid for a week because it meant the students got a better education in a better more secure environment. While the moral value of this, i.e. the desire to put others before yourself is incredibly admirable – is it still acceptable? Is the value of what I gave students by working more than twice what I was paid to, worth the fact that it was having a negative impact on my own life?

I recently heard a teacher talk about the self-sacrifice being worth it for the benefit of our students. It made me want to scream. While I have no intention to become self-centred and inflexible, the idea that your life and your health is worth so much less than that of your students is not an acceptable way to live. If nothing else, my self-sacrifice contributed to 300 plus students over the last year not having an English Department that supported them as it should have.


My life and that of my life with my husband, family and  friends  is incredibly important. Consequently, this life must come first. I am proud of what I have achieved in my professional career so far and I am sure that I will be proud of what I will achieve in the future. I am not however prepared to put my career ahead of myself, ahead of my husband and ahead of my family anymore.

This illness and my recovery (which I’m incredibly grateful for and amazed by) has released me to live my life no longer on auto-pilot. It has given me the freedom to do anything I want. It has also given me the freedom to enjoy the little things in life. The little things that make your life more rounded and whole and that are ultimately significantly more important than what we normally consider to be of more value: educational achievement; career; money; things; house.

Yesterday, my husband and I went for a 2.5 mile walk through the New Forest. A walk I have done a million times. Yet, this was the first time in a year I had been able to do it. I suspect unless you have been ill or have had your future or your ability to do even simple things put in question, you will not be able to understand the simple joy doing such an ordinary thing as going for a walk gives you.

I do not think such achievements as walking or climbing up a hill or reading your book for an hour or socialising with friends all afternoon are new joys. I don’t think they have gone from something of limited significance to now being hugely important. What has changed however is that I can now recognise that they are achievements and recognise they bring me joy.

If these little things can give me a sense of achievement and joy, then there is only one other question. What else is there out there that I have yet to do that can bring me equal if not even more joy or an equal if not even greater sense of achievement?

I was never somebody who was afraid of a challenge, I was never afraid of change but I have learnt that I am stronger and I am braver than I thought and that I can do anything I want. To not, therefore, go out and try and do new things and face new challenges seems an incredible waste of a life.

So last weekend, I went cavern trampolining in a slate cavern twice the height of St Paul’s Cathedral. It scared me so much, my legs shook and for much of it I clung to the net terrified but I achieved all I set out to achieve. I ran several times across the trampolines, I climbed up a scary ramp that required both emotional and physical strength, I went down a slide that scared me. Every time I was scared, I repeated to myself, ‘I can do it, I can do it.‘ Why? Because I could, I got through last year, I can get through anything.


Every where I look I seem to see challenges just begging me to do them. I have never climbed Mount Snowden so why not? I have never been on the longest zip wire in Europe so why not? I have never driven across Australia so why not? Part of the SUMO concept is to ask yourself several questions so that you can put your fears in perspective. One question is on a scale of 1 – 10 where 10 means certain death how bad is it or could it be? For the three challenges above perhaps a 1 or 2. Although a venomous snake may climb into your car in Australia which may well mean a 10 but seriously what are the chances of that?

While I have yet to learn whether this illness will have left behind any permanent physical limitations on my life (certainly I wasn’t quite physically ready for the intense aerobic nature of the trampolining), I do know that I will always do my best not to emotionally or practically limit my life and how I live it.

The reality of adopting such an approach to life does mean that I cannot predict where we will end up living, what we will end up doing and whether or not I shall stay in education. The other reality is, ‘I can do it‘, I am brave and I am strong. There is nothing I cannot achieve.

The even more observant amongst you will have noticed my blog subtitle has also changed. This required some thinking. How did I reflect what is in my blog prior to my illness, what is in it now and what I hope will be in it in the future? I settled on, ‘Living Life‘. For this is exactly what I intend to do. I intend to live my life not just experience it as a by-stander. So I do not have the answer to the question, ‘What Will Happen to Me?‘ but isn’t that exciting?



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. 🙂

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,


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.


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.