A Tale of Two Worlds

Yesterday I did something that I hadn’t done for almost six months. It was something I had been wanting to do for some time but hadn’t been in a position to be able to. It was an incredibly strange experience. I hadn’t expected it to feel so strange. I didn’t expect it to feel normal but I hadn’t expected it to feel so strange.

Yesterday I went back to school. For those of you who have not been following this blog, I’m the Head of English in a middle school. My mother thought going back would be quite emotional and I don’t know if she was right. I left simply feeling strange: not sad, not elated – just strange.

It was one of those occasions where there is a direct contrast between the well you and the sick you. When I was last there I was sick but had been running on adrenalin for so long, other than feeling a little tired, I didn’t feel sick. To return yesterday – sick, showed me just how ill I have been over the last few months. I am making progress but I am nowhere near the bright, energetic, dynamic whirlwind I used to be. The whirlwind was noticeably absent yesterday but the sick girl was not. Yes it is a little sad but it is not the prevailing feeling. I know the whirlwind (in some form) will return and for that to not be me now seems just natural and again realistic. The whirlwind too needs to go into my neatly labelled box – Not for you, just yet.

It was strange to be around the people I used to spend so much of my day with; it was strange to be in the building; it was strange to hear the kids say, “Hi, Mrs Ironside.” My world has been so different from that world, for what seems such a long time now, it felt simply strange to be there.

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Don’t get me wrong, it was lovely to get hugs from staff and have my students excitedly ask whether I was back and was I going to teach them in their next lesson. It was great to feel missed and wanted. You forget very easily how thrilling it is to have kids motivated to do a lesson largely because they love the way you do it. It didn’t feel sad however to have to tell them I wouldn’t be back until September. It seemed realistic and the most natural of statements. It was sad to see that some were disappointed to hear this.

It was lovely that one parent, who has M.E., months ago wrote a note of support for me and the student finally got to share it with me. I had always known she was a carer for her mum, I just hadn’t known why. I can now see her in a very different light.

I do wonder however whether any staff looked at me and thought, “she doesn’t look ill.” An understandable thought, as indeed I don’t look ill a lot of the time. I also wondered whether people noticed the lack of energy and how much quieter I was. Did they notice by the end of my hour there how much I was struggling? I am sure those who know me best did or if they didn’t, they did not doubt my authenticity when I said I was beginning to feel tired (slight underestimate there – exhausted more like it!).

It was hard to see my classroom, being a bit OCD, not exactly as I would have liked it to be. I have always liked to have things exactly in the right place, my tables exactly straight and all my books extremely tidy. Teachers have different mindsets and all the mindsets are probably right. Mine however is a tidy classroom produces a room in which students can feel more secure. They always know where everything is and therefore it is one less thing for them to think or worry about; therefore, producing a more productive educational environment. There are many teachers using my room now and so there is no one person responsible for it. My perfectly laid out classroom is tidy but not perfect for my OCD brain (this only exists in school!). If anything was emotional that was – I tried not to look!

The one thing I was hit by more than anything else was that I am no way near ready to go back to work. I spent 55 minutes in the school. Walked to my classroom twice and sat in the staff room for the rest of the time. By the time I signed out, I was on my last legs and had to go back to bed for three hours on return. I knew it would tire me out but I had not anticipated the true extent of my exhaustion. I didn’t get near collapse but I feel that if I had stayed there perhaps just thirty minutes more I would have.

To return to school and work even for just an hour a day will require significantly more reserves than I currently possess. I knew the road ahead of me was long but perhaps it is a little longer than I anticipated. Oddly this doesn’t make me feel sad or worried. Again it just seems realistic and right. It too is in that neatly labelled box – Not for you, just yet.

A Mixed Bag

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This last week has been a mixed bag. It has been a reminder about what this illness really is. For almost a month I had no collapse (the point where my fatigue level meant I wasn’t capable of continuing any form of activity). I had a couple of close calls but no actual collapse.

Three weeks without a collapse meant weeks without losing days to ill health as a consequence of doing too much. For almost a month, I wasn’t forced to spend days either lying on the sofa or in bed. Easter Sunday however I did too much. I walked approximately 150 metres more than I should have done. As a consequence, Monday to Thursday were lost in a blur of brain fog, pain and days on the sofa or in bed.

I managed on Thursday to get out of the house to go to physio but the simple act of speaking to him thoroughly exhausted me. Normally I could quite eloquently discuss my symptoms and progress with him, that Thursday I struggled to find even the most basic of words. On return I was back to my bed and the sofa.

There was no blog all week because I just felt too fatigued to give it a go. My brain didn’t have the energy to simply get through the week never mind write.

Friday, however, I woke up feeling better. Pain levels were dramatically reduced and my level of fatigue had improved. Friday morning I had an appointment with a consultant from a local pain clinic. I had to wait for twenty minutes in a busy waiting room with lots of movement, sounds and colours. I instantly started to struggle. Luckily the nurse called me early and I escaped the mela.

My friend, who has visited many a pain clinic, had told me that she had never come across anybody who wasn’t just lovely. Despite this I was nervous that I would yet again come across a consultant more concerned with establishing my stress levels and whether I was depressed than actually assessing my biological illness.

My friend was right, the nurse told me next time to contact them and they would arrange a room where I could wait without so much sensory bombardment. The consultant was wonderful. He was knowledgeable but prepared to admit when he didn’t know something about M.E. Unlike my previous consultant who was not knowledgable and more than willing to pretend he was. The consultant filled me with confidence that I can make progress and that I can get my life back (altered as that may be). He stated clearly that I was definitely not depressed and I had the right attitude to it all. He made suitable referrals that didn’t come across as simply letting his sloping shoulders move me on to somebody else.

He prescribed me Melatonin which seems four days into taking them to be revolutionary. Melatonin is produced in the brain and assists with enabling refreshing sleep. The less refreshing sleep you have the lower amount of Melatonin you produce thereby the less refreshing sleep you have. The less refreshing sleep you have, the harder it is for your body to heal itself. It is a viscous circle that is almost impossible to escape without some form of intervention. For the last four days I seem to be filled with energy and a clarity of thought. It could all be coincidental or it could all just be a placebo effect. I don’t know.

Despite feeling so full of energy and feeling able to do anything I wish, now is the time where I must be careful. It is so easy to do more than you should. Where in my last three week period of remission, I got to the point of near collapse on several occasions, this time I must do all I can to not get to that point. On Saturday I went out for dinner with friends therefore I rested all day and only stayed for an hour and a half. I left feeling full of energy and not in pain. This was the right time to go. It would have been so easy to convince myself that I could have coped with staying for dessert. While I may well have coped, it would have been another withdrawal from my bank of energy. Managing my withdrawals has to be the centre of all that I do now.

My physio, six weeks ago, gave me exercises to do that would help strengthen my back and neck so as to reduce pain in these areas. I followed his instructions yet it seemed that 24 hours after doing them, I always had a bad day. After a week of trying them, I gave them up. My body was telling me it was a bad call. The pain consultant also recommended I stretch every second day. Early days but I have yet to have an adverse reaction to this. Perhaps in the last six weeks my body has healed to the extent that it can cope with limited exercise.

Whenever you have a good day, you start planning for the future. My brain can’t stop itself from being hopeful, from thinking about what I will do when I get better. My collapse was devastatingly sad for that very reason. I felt that I was making progress, that I would never have a collapse again but I did. With that collapse my dreams once again came crashing down. I don’t think however that this means I shouldn’t dream.

Dreams give you something to look forward to, they give you the hope that you need to keep on fighting despite the pain and fatigue. These dreams do however need to be put in a neatly labelled box that says – Not for you, just yet.

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A Little Perspective Can Be A Good Thing

On Easter Sunday I was forced to walk much further than I wished, through no fault but my own. As a consequence, today I am too exhausted to move and in too much pain. The distance I had to walk beyond what would have been okay was about 0.2 miles. Today I have lain on the sofa watching TV or been cuddled up in bed with my iPad. I’ve had to take extra painkillers and have had to let everyone else look after me. Today I feel pants.

Over the last few months it is possible I’ve watched more TV than I have ever done. I’ve watched so much TV there is never anything on BBC iPlayer I haven’t seen. As a consequence, I’ve watched lots of random documentaries and TV news.

A thought continually occurs to me as I watch the news about events in The Crimea, Syria, Central African Republic or programmes about aid and developing countries all over the world: people in these countries too must have M.E.

M.E. is not a ‘Western’ disease. It is not a disease experienced as a consequence of over development, obesity or the way many live in the ‘West’ today. It is a disease that has existed for centuries, with records showing it in nations all over the world. Indeed my blog has now been read in over 45 countries including many that would be considered far from being ‘Westernised’ in a traditional sense e.g. Nepal, Angola, Egypt, Pakistan and Romania among many others.

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There is no question then, in my mind, that there are M.E. patients in these countries. They may not call it M.E. or CFS or any of the multitude of names that it has been called. There may be many thousands who go undiagnosed. Diagnosis however does not create an illness, it simple defines it and puts a pin in what it is.

Where my problem today is that on Easter Sunday I was foolish enough to go for a walk without considering how to get back to the car, Syrian M.E. sufferers may be trying to work out how they refugee to safety. Their problem is not getting back but getting away.

Somebody in a recent forum laughingly mentioned how her and her boyfriend were watching a zombie movie and she said to him, “why did they do that? That was stupid! If that was me, I would have gone running out and blown their heads off!” Her boyfriend then reminded her that she could no longer walk, never mind run but perhaps they could pimp out her wheelchair to make it possible.

What happens in the real world when you can’t have a wheelchair or any form of transport to get away from something life threatening to you and your family? What happens when the only form of transport available is your feet? What happens when you know that your feet cannot take you to the door of your house, never mind take you to safety? What happens when you are in so much pain and your brain is so cognitively confused that you struggle to even understand what is going on, never mind make life changing decisions? What terrible decisions do families have to make when time and circumstance are firmly against you?

Not everyone lives in a war zone. Like me, many live in a world of safety. My thoughts however still turn to those who live in a world where M.E. is even less recognised than it is in the UK; a world where access to information or supportive forums does not exist; a world where the government doesn’t provide a safety net for the permanently disabled. At least for many sufferers in the UK and the USA, even if your family and your doctor don’t believe you, there is a world out there that is still willing to support you i.e. the internet.

What happens when you as the woman in the family are expected to cook and clean, help on the farm, perhaps being involved in addition in some cottage industry so that your kids can go to school – what happens when you suddenly come down with M.E. symptoms?

Surely, in understandable ignorance, you do what many of us in the UK did, you fight on through the fatigue. It is only tiredness. You think it too will pass. What happens when you start to feel so much pain that some of your daily duties become impossible? What happens when the glare of the sun causes your eyes so much pain and creates such horrendous migraines that you can no longer help outside? What happens when the pans to cook dinner for your family become too heavy to lift? What happens to you and your family? What happens to your child’s education?

What happens when you live in a world where nobody understands what is wrong with you? What happens when you go to the doctor (if your family can afford to send you) and they at the very best suggest your problem is psychiatric (they at least may have an old understanding of M.E.)? But what happens when you go and they have no idea what is wrong? What happens when you go home and you keep on pushing yourself in the hope that it gets better? What happens if you go home with the stigma of a psychiatric illness hovering over your head? What do the village think? What happens to your standing in society? What happens if those in your family or community consider you malingering? What happens?

Intuitively, I think I can answer some of these questions. Through knowledge or experience, I simply haven’t a clue. I can only assume that the experience of M.E. in such worlds is catastrophically different. It is a recognised fact that M.E. can be fatal, I can only assume for many such patients it is.

Once after I apologised for moaning about being in pain (before I became ill) to a friend who I knew in reality must be in far more pain than I, my friend told me – her pain was no greater than mine. Everyone has their own perception of pain and what is a 10/10 pain level to me feels as bad as anybody else’s perception that their pain is 10/10. I do believe however perception differs fundamentally from perspective. Although at times I have experienced pain in my perception as 10/10, a little perspective on my situation makes it clear that the same level of pain is not as easy to handle when you are in an environment which does not enable you to rest or access treatments that support you.

It is disgraceful that I was told twice last week that there was no medical professional who could support me through my M.E. but my reality is that I am safe. I am in a family where I do not have to work for the rest of my life if this is a situation my illness forces me into. I am not saying it would be easy but it is possible. My greatest trauma this week was taking an Easter Sunday walk with my family that was too long.

In the back of my head, I have a plan for what I would like to do to support M.E. patients in countries where there is currently no medical knowledge or support for this illness. As to the means (both financial and practical) to go about it, I unfortunately have no clue. Perhaps for the moment I can only allow my knowledge that there are those in a far worse situation than I to help me stay positive, to stay grateful for what I have.

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Guilt Huh Yeah! What Is It Good For? … Absolutely Nothing!

Anyone with a chronic (lasting more than three months) illness deeply understands the pervading guilt that infiltrates all aspect of your life. M.E. is no different although perhaps more so than some other illnesses. An invisible illness is invisible even to you under two circumstances – when you have a momentary flux in the right direction towards feeling healthy and when you become so used to feeling ill that you no longer recognise how ill you actually are. You can often lose the understanding that you have nothing to feel guilty for.

M.E. forums are filled with a deep sense of guilt:
1. My daughter has been home all Easter because I can’t take her out like the other mums do.
2. My house is a mess but I haven’t the energy to clean it.
3. My mum is ill and I am her primary carer, my family think I should look after her because I’m the only one who doesn’t work but some days I can barely get out of bed myself, my mum isn’t getting the care she should.
4. I’m not at work so people are having to do my work for me.
5. I no longer earn my share of the family income, I am putting financial pressure on my partner.
6. I’m living off benefits; I never thought I would do.
7. My family have to go out of their way to look after me and I find it so hard to accept.

Dealing with the emotional side of being ill can for some (including me) be the most challenging aspect. Somebody wrote the other day that we must remember that we are not just physically fatigued but also mentally fatigued. Mental fatigue means that dealing with the strong emotions that M.E. evokes is even more difficult than it would be if you were healthy.

The additional fact that so many patients are isolated from those day to day interactions that enable the gentle release of built up anger or guilt help to further instil this sense of guilt. For most patients no longer working or going to school or regular socialising has resulted in an internalising of many emotions. There is nobody to vent to regularly except perhaps your carer. Internalised emotions build up and become a debilitating factor in the illness that caused the negative emotion in the first place. It becomes a viscous circle that for some becomes impossible to escape.

As I have stated many times, I am lucky that my friends and family believe me and support me. They don’t pressurise me to do more than I do, in fact often they pressurise me to do less. For far too many however they have to deal with guilt cloaked in the understanding that their friends and family do not believe they are really ill. Some have the further battle of a doctor who doesn’t believe they are ill.

So, for these people, they not only have to fight for acceptance, treatment and the space to try and recuperate but also have to fight their own sense of guilt but without the emotional or practical support of families. As far as I am aware no survey has ever shown whether strong family support empirically enables greater recovery from this illness. Logic however would suggest this is so.

A sense of guilt makes you feel that you shouldn’t ask for help, that that job that you know you shouldn’t do, you should do. It can force you to make decisions that are ultimately detrimental to your health. Your mental fatigue however can make the decision and indeed the action in itself more emotional and therefore stressful than in reality it is. Stress displays itself in M.E. patients through poor sleep and physical pain further debilitating the patient, leading to further feelings of guilt over their perceived weakness.

Regularly the M.E. forums stress to members, that it is not their fault. They are not responsible for being ill, they are not responsible for the repercussions of this illness. They did not deliberately make themselves ill – there is no one to blame for this illness. When only you and you alone can understand your illness, when you have no clue for how long you are going to be a burden on your family, this is hard to accept.

Many M.E. patients it seems were the strivers and the ambitious people in their world. The ones who perhaps would look at others who just did enough to get by as lazy and unproductive. Faced with the reality that these ‘lazy’ people can now achieve far more than you can, it is understandable that you think you should be able to do more. If you were a significantly higher achiever in the past than those people around you, surely (if you wanted to) you could be at least as productive as everyone else now. The reality is for many this is not possible. Although you can take away the possibility of doing more, it is harder to take away the desire or instinct to do more. It is this instinct that instils this sense of guilt.

The reality is that our illness has resulted in a greater burden for our friends and family to carry. In today’s world, employees are already expected to work their socks off every day and to be a ‘good parent’ your child must eat perfectly every day while attending lots of life-affirming and skill development classes. So adding your burden does make life more difficult. It is natural that those in your life can at times get frustrated and tired and sometimes it can seem to the patient (real or perceived) that friends and family are sick of the burden.

Patients in an already weakened position must try and read between the lines: is this person expressing something they truly believe; is this person worryingly tired or stressed; or is this person simply venting. Emotionally this can be thoroughly challenging. How do you balance your need for support and care while ensuring that those around you don’t do too much themselves?

Communication is the answer. Communicating something so personal and so emotional is hard though. Trying to battle through your sense of guilt in needing the conversation in the first place means that for many this is a conversation that is avoided at all costs. Fear of insulting or upsetting those people you need most in your life can prevent you having the very conversation that keeps these relationships healthy.

Illness is often perceived as a physical ailment unless it is a clearly defined psychiatric illness. While M.E. is most definitely a physical ailment you must also protect your head. Clinical guidelines for M.E. state quite unequivocally, ‘depression is not a symptom of M.E. but can it can be a repercussion.’

M.E. patients have no reason to feel guilty, they have done nothing wrong. Easier to say than believe however – at least at times.

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Waking Up With Stinky Hair!

This morning i have woken up and my hair stinks! This morning I have woken up and I’m a little stiffer than normal. This morning I have woken up and I am a little more tired than normal. This morning I have woken up feeling like last night I had a good night. This morning I have woken up feeling like last night I was almost a normal person again.

Sad as it is to say, it is very hard to socialise when you have M.E. Patients are meant to flip between cognitive, emotional and physical activities (mixed in with lots of rest) so as not to tire ourselves out too much. Socialising however requires all three continuously for the duration of an event. Consequently spending time with friends or family is necessarily exhausting.

This morning however I can reflect on the few hours I spent with two good friends last night and be grateful for the fact that I enjoyed myself. I didn’t find myself in great pain and I was able to continually follow and add to conversation.

We didn’t do anything special, really we just sat around in the beautiful evening sunshine and chatted. These are things however that when you are ill, gain a new more important significance. These are the things that make you feel normal and so when you can’t do them, you don’t feel normal.

Last night, there was no mention of my illness other than the odd joke about my husband having to do most of the running around. For once a long conversation about how I was feeling was not needed, my illness wasn’t impacting on my ability to enjoy myself or on the ability of other people to enjoy themselves.

Ok so today I’m a little more tired than usual and today I’m a little stiffer than usual. Okay so today I am going to have to manage my activities a little bit more carefully in order to ensure I don’t run out of energy!  Feeling so much better over the last couple of weeks (a month on Sunday!) enabled me to enjoy a night with friends. It has enabled me to take the risk of having friends over where I can’t just leave as I get tired.

Why does my hair stink? First barbecue of the season – that’s why!

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Not Just M.E. Girl

Being ill does not define who I am though for many of my readers that is all you know. You first came across me as that girl who writes about having M.E. You may have picked up titbits of information discernible through what I write – most will understand I’m Irish, married and a teacher.

Today I thought I would fill in my background a little. Enable you to see me as a rounded figure not just the sick girl!

I was born 36 years ago in Cork, Ireland. I grew up surrounded by the countryside, swimming in the River Lee which ran past my house. My neighbours had horses, dogs and cats and we had two cats so my childhood was filled with animals. My sister is two years older than me but as a child we always played together along with our neighbour, who being a year older than me fit neatly between us.

My sister was the academic with the photographic brain, I just worked very hard to do well. Nothing came easily for me, if I was going to do well academically, I had to study hard. Education initially was incredibly difficult. My mother was told I was ‘thick’ and she should stop trying to push me, that I would never achieve much in life! This was said by a teacher! Today, my career would be in jeopardy if I spoke this way to a parent, in those days it was more accepted.

It was not accepted by my mother! These comments coincided with an American special needs teacher staying with us. One day, watching me do my homework, she told my mum that I was dyslexic. This was not something widely recognised and certainly supported in schools in Ireland at the time. My parents endeavoured to find extra lessons for me that would help me develop the necessary strategies to cope. These I did and my reading age went from significantly below my chronological age to 16+ (as an 11 year old) within a very short period of time.

Dyslexia still gets me at times, especially if I am tired or stressed. As a teacher however I find it a fabulous motivating tool for children who also experience the frustration and anger of being dyslexic. I hope they get hope from the fact that their teacher, the Head of English, was once like them too.

In school and university I was a bit of a nerd. I always wanted to do well and in school struggled socially at times. I had a couple of very close friends but otherwise wafted between different groups. I was never on the outside but I was never on the inside. As a teenager I always wanted to be on the inside however today I realise to have been an insider I would have had to compromise myself morally and socially and I think even back then, I felt this was not something I wanted to do.

I did a degree in History and Geography in a University College Cork and from there moved to London where I did a Masters Degree in East Central European Studies at the School of Slavonic and East European Studies.

Moving to London was to ultimately change my life forever. It was during my Masters Degree that I made two of my three closest friends, 14 years on they are still my closest friends. Where during my Arts Degree I had been a bit nerdy, studying extremely hard, during my MA all of that went out the window. Socialising and learning through the incredible multi-cultural student cohort shaped me and widened my outlook significantly. I passed my MA but in the end that was only a cherry on top of the cake of what I had learnt over the course of a year through the people I had met.

When I first moved to London, I worked as a Recruitment Consultant – a career that did not last long. My boss did not like my advising 16 year olds to stay in school to give them the best chances in life nor did she like my sending a transvestite to a job interview, worse however I made very little placements and therefore very little money for the company!

I was fired before the end of the summer and managed to get a job at The Irish Post newspaper in Hammersmith. They allowed me to work part-time throughout my MA, selling advertising for the paper. I got a promotion and for a few months was the Classified Advertising Sales Manager! I don’t enjoy sales unfortunately but at least this time I made enough to keep my job. I also believe they very much wanted to support an Irish student in London therefore some flexibility in my sales was accepted!

After my MA, I got a job working for Bloomberg in the City. You may know its owner, Mike Bloomberg, the former mayor of New York. For Bloomberg I organised major events and parties. This job catered very nicely for my need to have control over everything! We organised parties costing millions. Bloomberg was known for their extravagant parties and nobody ever turned down an invitation. While this job was fun, overtime it morally began to grate on me. I felt that their philanthropy was only for those organisations that would provide them with suitable publicity. I felt that their carefree spending of money was so wrong when there was so much poverty in the world.

Much of this carefree spending came to an end the day the Twin Towers went down. We lost two members of staff and were first to broadcast about it. We had a TV studio in the towers and they broadcasted live from the studio until the moment somebody dramatically ran in telling them they had to get out of the building.

Suddenly, the company was faced with the fact that nearly every single major client in Europe and the United States had lost employees when the Twin towers came down, Michael Bloomberg was running for Mayor and so the extravagance we had gotten used to suddenly became crass and vulgar.

I couldn’t get away from the sense of moral discomfort however and so after three years I resigned. On resigning, I moved to Warsaw in Poland where I stayed for four and a half years. This was another moment that would have a fundamental impact on my life. I learnt Polish, I worked extremely hard teaching English, I became a TEFL teacher trainer, I published some teaching articles, I edited the displays for the Warsaw Jewish Museum and I worked for the Irish Government for three months at one point in rural Poland.

By living in Poland, I believe, I became a more rounded person. I got to live in worlds of extreme wealth and poverty, I put myself in positions that were terrifying due to lack of Polish and lack of cultural knowledge, I made friends for life and learnt how many friends are transient when you live abroad. I had to learn to grasp every opportunity as it came along because you never knew where it would lead you.

Eventually I reached the point of knowing that my career aspirations could never be met by staying. I was not at the top of my career but to get there required a major reduction in salary. You don’t have to be a foreigner to manage an English school so you can pay a Pole to do it for less.

I decided to move back to England and train to be a teacher. I spent a year training in Exeter in Devon. My first job was in a secondary school in Hampshire where I taught History. In my first year in this job I met my husband who, at the time, was a Captain in the Royal Tank Regiment. After two years he moved camp and I used it as an opportunity to get out of a very difficult work environment.

We now lived in Dorset and I got a job teaching English in a middle school – a very different subject and environment. It was a temporary job that I thought I would just give a go. I loved it and felt I was much better at teaching English than I had ever been teaching History. From there I was offered a permanent job as the Head of English.

I adored my job and felt that I was very good at it. Then of course the army, as it was prone to do, threw a spanner in the works. My husband was made redundant and had to leave the army after ten years of commitment. Once again we had to move.

He luckily got a great job but in Warwickshire! I, extremely luckily, managed to get a great job (again as Head of English) in a middle school nearby. Where we had assumed we would end up living in some awful dive of a town just so we could both work, we ended up living in Stratford upon Avon, Shakespeare’s birthplace. It is a truly wonderful town and somewhere two years on we really love living.

I haven’t worked since November but I hope beyond hope that I will be able to stagger a return from September.

I am more than my illness. I have dreams and aspirations. I have lived in 36 years a life filled with excitement and adventure. Every experience changes the path you are on slightly or extremely therefore I have no doubt that the experience of M.E. will / has changed my life fundamentally. Where it will lead me to is as of yet unknown but somewhere it will definitely led me.

The photos below are of friends and family and are proof that I am more than my illness!

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Energy, Energy Everywhere But I Must Leave Some to Spare!

Recently I’ve started to feel considerably better. Hours and even sometimes a whole day goes by where I don’t feel unwell. For a short period, I don’t feel tired and I’m in no pain. My brain feels fog free and I allow myself to think that I’m seriously on the mend.

Some interesting realities have started to emerge though that I feel are an early warning that I’m still not well. Although it is becoming harder to be a good girl and not dramatically increase my activity, it is also becoming more and more important that I carefully manage my activity level.

For months after getting M.E., I spent my days deprived of even vaguely enough energy to get through a day which involved bed and the sofa, even making myself a simple lunch for sometime seemed too much. As anyone who has ever had M.E. however will recognise, as soon as I went to bed my brain would pop into action, the adrenaline that had kept me going during the day would buzz around my body, making sleep an impossibility. I would awaken in the morning feeling in no way refreshed. Some nights I would sleep for maybe three or four disturbed hours.

Now, however, I am faced with a new interesting reality. Not everyday but often, it feels like my energy is bubbling up inside in me and to sit still and rest like I must is almost impossible. I want to buzz around the house doing everything I haven’t been able to do for months. I find I can walk for fifteen minutes without feeling like I can’t make it home.

While I feel so excited to be feeling so much better, there are repercussions that I could not have predicted. On the days where my energy seems uncontrollable, I need to control my activities. Therefore at night, with my energy unused, instead of adrenalin preventing me from sleeping, it is all that energy that normally would be used up by working or exercise. So I lie awake at night unable to sleep. I feel that if only I could go for a run or a long walk, sleep would come easily. The reality is though that a run or a long walk would have me back where I was a month ago. That is a reality I am not prepared to return to.

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While a fifteen minute walk has no instant repercussions, in fact if anything it makes me foolishly feel proud, there are repercussions and those I must not allow myself to forget. This week I felt so good. I went for a walk everyday. 8 minutes to the river, sat for 10 minutes and then 8 minutes home. Monday to Thursday, I felt so good and so energised. Friday morning however I woke up feeling exhausted, like I had done far too much. Clearly I had over estimated how good I felt all week and Friday I paid for it.

There was no warning during the week that I was over-doing. I have learnt to read my body and notice the signals when I'm doing the wrong thing. It is possible however that the signals have changed and I must learn a brand new language in order to prevent boom and bust.

This morning I woke up feeling energised and pain free. I dressed and went to the kitchen. The dishwasher was full and needed to be emptied and refilled. Normally I avoid the dishwasher, unpredictably it is such a huge sap on my energy. To empty and refill it takes, I believe, about a third of my daily available energy. Having not done it for months however I decided to do it. It needed doing and my husband was about to go out for the day.

It shocked me that the simple process of emptying and refilling it (on a good energised day, first thing in the morning) should leave me exhausted and out of breath. My breakfast sat beside me and I struggled to have the energy to pick it up and eat it.

It is so easy to forget you are ill on a day where you don't feel it! It is all the more important consequently that on these days I force myself to sit and not do more than I would have done on a good day before I started to feel better. Only those that have been in this situation can grasp just how frustrating and dangerous this situation is.

Yes, I can begin to very slowly increase my activities. However, my support worker has warned that I can only increase one activity a week and only by 20% and I can only do the increase two or three times a week until my body can get used to it and then I can increase it on the other days. In other words, increasing your activity level to the point where on a really good day your energy is used up is months if not longer away. Increase it at a faster rate and you face the danger of Post Exertional Malaise and the inevitable relapse that would come along for the ride as well.

So, on medical advice, I have increased my night-time dose of Amitripyline so that I can sleep, for sleep remains the key to improving my health. I have stopped my day time dose however, as my pain level has decreased by so much. During the day, I must stick to my routine and structure my day sensibly. I cannot let my high energy levels dictate my activity level.

Given the choice between my difficulties of two months ago and my difficulties of today, of course there is no question that I prefer where I am now. On the other hand, I don't want to contemplate the disappointment I will feel if all this hard work and determination doesn't result in ever increasing progress. The disappointment I will feel if through foolishness and lack of vigilance, I allow myself to boom and bust, is not something I wish to feel.

So I feel my illness has now become a case of mind over matter. I have to learn to ignore all those signals that my body sends me to do more while at the same time trying to restabilise at this higher energy level.

This is a situation however most M.E. patients would give their back teeth for. The dilemma of having more energy than they know what to do with, for so many, is a distant memory. So I'm not complaining, I relish this new situation I find myself in.

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United We Stand, Divided We Fall

I hate when people on M.E. forums declare that they are better and can tell you how to get better.

I don’t hate that they are better, far from it. Anyone who is ill deserves to declare to the world that now they feel better. What I hate is the superior attitude that seems to suggest that those who are still ill could have been better if only they had been smart enough to follow these guidelines.

Of course the very statement ‘get better’ brings much bitter resentment. Some people seem nastily determined to deny people the right to ‘get better’. They declare that there is no cure for M.E. and therefore you can’t get better and if you are better then you could not have had M.E.

I am no expert but to me anyone can possibly be ‘cured’ of M.E. despite there not being an official cure. We are all in the dark blindly trying to work out what combination of drugs, meditation, vitamins etc will help us. Firstly, who is to say that somebody can’t get that combination right despite it not being an official cure. Secondly, who is to say that something beyond this combination had the power to cure them.

No, I don’t mean religion. I am far from religious and do not believe that god comes down and through a miracle cures people. I do believe that sometimes our bodies just heal. We have all heard of people with terminal cancer, sent home to die, six months later they feel better and tests show the cancer is completely gone. I can’t explain it. If there is not a thorough understanding of the illness and a thorough understanding of how to cure it, then nobody has the right to attack somebody for having gotten better.

Of course some are attacked for simply using the term, ‘gotten better’ or ‘cured’. Again, I believe to attack somebody is very wrong and the vitriol I have seen directed at these people is simply disgusting. However, here I might agree somewhat with the sentiment if not the method of declaring it.

It seems very clear, that few if any M.E. patients ever recover. As it is, only 25% of patients ever return to the same level of activity as they had prior to their illness. 50% stabilise and manage to go back to work but forever have to pace themselves and will have relapses at times. Many of these will not return to work full-time. The remaining 25% never improve and often suffer from severe M.E.

Of those 25% who return to the same level of activity, their lives improve immeasurably. They can hold down a full-time job, look after a family, go on skiing holidays however always in the back of their minds is the knowledge that doing too much, having a vaccination, getting an horrendous cold could lead to a relapse. A relapse of a day and then they are back to normal or a relapse that lasts years.

So I get the people who declare you can never be ‘cured’ or ‘healed’. You can beat M.E. into submission and not let it rule your life but it will always be there just waiting for you to mess up.

The declaration that if you get better, you can’t have M.E. is depressingly aggravating. Why are these people so knowledgeable about M.E. when the real experts (and by this I mean the researchers) are not exactly clear on what it is themselves? Research seems to show that there are multiple causes of M.E. and it seems to indicate that ultimately M.E. will be an umbrella term to describe multiple similar illnesses. So, those patients whose symptoms match the Canadian Consensus Criteria may all have M.E. but may not have the same illness.

You could find it horribly sad that they may eventually be able to differentiate between the different illness under the umbrella of M.E. and find a cure for some and not for others. Leaving some people with a loss of ‘life’ and others with freedom from a debilitating illness. I believe, however, we should celebrate those whose form of M.E. has enabled them to ‘get better’ rather than attacking them.

The M.E. forums have given me so much support, laughter and encouragement over the last few months. I have learnt so much through other people’s experiences and I hope I have helped others if only by being supportive. I find it thoroughly upsetting when people turn on others however. Forums should be a place to find support and not somewhere to be attacked. If you don’t like what somebody has said then ignore it, pass it by, don’t give it a second thought.

On the other hand, while I am disgusted by people who are nasty to others, I perhaps understand why.

I can only imagine how it must feel when you have done everything in your power to help yourself and no improvement. Along comes somebody else who through poor wording or unintended arrogance declares they know how you can get better. It is understandable that in frustration they strike out at the person who in their own way was just trying to help. It doesn’t make it right but it does make it understandable.

Indeed, some people may find this very blog insulting, upsetting, frustrating. I am torn between publishing and not publishing it as I feel M.E. patients need to be strong together and fight for good treatment and respect together.

However, if you were a parent at a football game and you saw your child’s team band together to beat the other team but were nasty and upset each other the rest of the time. would you be happy if nobody stepped in to stop it? As a teacher, I would be a failure if I allowed our team to win the football game at the cost of teaching students to respect each other.

Also, which team is more likely to win – the team where everyone shows everyone respect or the team where there is no respect?

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Career Bereavement?

I’ve wanted to be a teacher since I first got what being a teacher was. As a teenager I ran a very successful debating society in school and that I believe was the start of my teaching career. It may have taken some time and several countries before I actually became a full time professional teacher but a teacher I eventually became.

In my career, I have changed stage (secondary school to middle school), changed subject (History to English) and changed career aspiration (Head of Year to Head of Department). I have found teaching to require the hardest work possible, I have found it aggravating, I have found it devastating but overall I found it exhilarating, challenging and rewarding.

Despite this, I never felt that teaching would be my career for life. I imagined becoming a Headteacher at 40-41, do it for ten years and then move on to something else. I had begun the process by applying for Deputy Head jobs. I’d even had an interview for one, a job very luckily I didn’t get. Lucky for two reasons: firstly it was due to start last January when I was in the midst of terrible boom and busting, secondly the Headteacher was an idiot who I deeply disliked and who deeply disliked me!

Now I am faced with the potential situation that I will not be able to teach again. At times it seems inevitable and at times (such as now) it seems simply a possibility.

If you have seen the recent rap Dear Mr Gove by Jess Green you will have some understanding of the pressures teachers are under. How Ofsted and Gove often seem to remove the focus from teaching to quantifying the teaching. Now, my last blog referred to the importance of data but data should only be used to improve your work rather than data for data sake.

The workload in teaching is outrageous. Before I became ill, I taught 120 students a minimum of 4 times a week each.

1. Marking
– According to Mr Gove and Ofsted, their books should be marked after each class – that’s 510 individual items of marking a week. Assuming each piece of marking takes 30 seconds (some chance!) then that is 4.5 hours of marking per week.
– Each child is expected to do two pieces of homework a week. Assuming one is just a tick, tick, flick piece of homework (not recommended) then that will take 1 hour.
-The second piece needs to be more substantial. Each piece takes probably 5 minutes to mark. That is about 10 hours of marking.
Marking alone then makes up 15 hours and 30 minutes.

2. Lessons and lesson planning
Before I was ill, I taught 20 hours per week.
– each lesson takes 30 minutes to plan and prepare resources for. That is 10 hours.
– 15 minutes in the morning and 20 minutes in the afternoon was spent with my tutor group. Total of just under 3 hours.
So I spend a total of 33 hours teaching or planning.

3. Meetings and duty
– every Monday we had a meeting which lasted up to 2 hours.
– duty every Tuesday at break – 15 minutes
– departmental / pastoral meetings once every two weeks or so – 1 hour
So this is a total 2 hours 45 minutes a week.

4. Data recording
– data workload varies dependent on the time of the year. At reporting writing time it can take up most of your half-term. However conservatively I will put it at 3 hours a week.

Do a simple calculation and that requires a weekly workload of 54 hoursa week and that doesn’t include chasing students for homework, after school clubs, a child in tears because she fought with her friend that means you don’t get a lunch break. Add to this the fact that I am a Head of English then 65 hours a week plus isn’t just likely but inevitable.

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It is no surprise therefore that I do worry that I will not be able to return to teaching. A 12 hour day plus working at night and the weekends seems completely impossible at the moment. Going part-time, I’ve always been adamant, is impossible. Part-timers always complain that they can’t complete their work during the day and therefore end up working at home on their days off. My days off will have to be for rest and rest alone. A part-time Head of English is just not feasible. It would be deeply unfair on the children whose education you are there to support.

If I cannot return to teaching full-time, I must therefore give up teaching. Give up teaching at least in the traditional sense, tutoring perhaps is a possibility. To leave teaching would be like a terrible bereavement. Teaching to me is a vocation, I believe I had no real choice but to become a teacher, all paths would have eventually led to it. I must therefore begin the process of coming to terms with the reality that I may have to leave. In order to reduce the trauma of leaving, I must begin to consider it a possibility in order to reduce the shock and sadness.

I am incredibly lucky, the senior management in my school are incredibly supportive and understanding. They are putting in place the only plan I believe possible that will hopefully enable me to stagger a return to full-time teaching from September.

There is no guarantee that this plan will work, all the support in the world cannot defeat the vagrancies of this illness. I must therefore be positive and hopeful but not forget what reality might be.

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Statistically Exciting

I am not a statistician, never have been, never will be. I deal with words and not numbers. I do believe in the power of objective statistics however. I believe they can reveal patterns. They can show strengths and weaknesses. Consequently, statistics used properly are essential.

I’ve been very teachery about having M.E. I have very carefully recorded three times a day my energy, activity and symptom levels. I have also daily recorded a specific mark out of ten for 15 symptoms. I have daily averages, weekly averages, monthly averages, percentage change month to month and across three months. I record how far I walk in both distance and time, I record how often and how long I meditate for and I record every time I take a tablet. I record all my activities and have weighted them by how much energy is needed to complete them.

I have asked every person I met from the medical profession, how do I establish my energy/ activity baseline. Each time I have received generalised advice that really has not helped. I have, therefore, been determined to establish a baseline myself and to work out a way to balance my energy expenditure and my symptom level. For months I have not succeeded. Today however represents the beginning of my third week where I have more or less achieved this.

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The above image represents my last six weeks. My objective has been to create a flat line where all three sets of data (energy, activity, symptom) are at the same level. It was so exciting last night to see that I’ve almost cracked it. The last two weeks haven’t been consistently flat but I’m almost there. There are a couple of blips but I know why and they were planned in advance (a family gathering, a school theatre performance, starting to take amitriptyline).

That graph has been slowly emerging all week and so I was aware about how well I was doing. It made me even more determined to not do something silly and ruin it all.

Proof that I was doing the right thing however came when I completed my weekly symptom averages for this week. Statistics can be ridiculously dry but I found them last night so exciting. Almost all my symptoms are at their lowest level since I started keeping records in January.

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The only symptom that just refuses to go down are my headaches. I have suffered from horrendous headaches for the last two weeks. My husband has come down with a cold featuring bad headaches so I’m hoping I have caught the same cold.

Every week I usually experience what is known as boom and bust. You feel good, do too much crash and burn, get Post-exertional Malaise (PEM), spend 3-4 days recovering. 16 days ago I went bust, see my earlier blog about this experience. I spent three further days recovering. This was my last experience of PEM. I have only lost 4 days out of 16 because I did too much. Before this, I could have guaranteed that I would have lost at least 8-10. Progress is being made.

This is a particularly dry blog but I think you avoid empirical evidence at your own cost. For many months I had assumed I was doing the right thing. I had assumed with no evidence that I was balancing my activity and energy sufficiently. I wonder now whether if I had started monitoring myself more carefully earlier would I have started to make progress earlier. I have had to learn that often my perceptions of how much I do a day has little to do with the reality of how much I actually do. Perception is important but not trackable or even dependable unless transformed into dry data and carefully recorded.

I use to keep written records in addition to numbers. These records detailed in words exactly what I’d done, how I felt about it etc. All of that became too much and became an activity in itself. A dreadfully boring waste of my time! Plus, how do you statistically track and graph qualitative evidence? My current system takes three minutes, three times a day.

Before I became a Head of Department in a school, I was a bit dubious about the power of data. I felt it was more important to know your students and get your teaching right. Quickly upon became Head of English, it became clear that although the quality of teaching and knowing your pupils was essential, knowing statistically where your students are as individuals, classes and cohorts helps you to guide their learning and establish whether what you are doing for your department as a whole is working.

The question is then, if it is essential for managing a department, why would data not be essential for managing an illness, especially an illness like M.E.? If I could be told that by taking x drug for y length of time, I would get better, I’m not sure I would trouble myself by data tracking. However, all M.E. patients are aware of the fact that there is no x drug or y length of time. 6 months in, I have had one half hour phone call advising me how to pace myself. I must therefore carefully manage my own activities, I must try and work out my own treatment plan.

If I work out a plan, I must keep records, otherwise how do I know my plan is working? How do I know when and how to tweak my plan? Hoping you get it right isn’t good enough for me.

So, I now have only one objective – to keep up this positive progress: I must keep my graph flat, I must avoid bust, I must carefully manage any increase in my activity levels.

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