Tag Archives: illness

An Ode to India – travelling with disability

For me the decision to travel to somewhere new is usually immediate and always filled with excited anticipation – sometimes perhaps with a hint of nervous anticipation. For me the world is large with so many places to visit and so many experiences to have but the world is also small. Nowhere is any more than a few days travel time away. If the world is so small, why not see as much of it as I possibly can in the 80+ years I will spend on this planet?

Everyone is different etc etc, but seriously I don’t get those people who are happy to stay put and never do anything that is out of their immediate knowledge and comfort zone. Seriously, that would be ridiculously boring. I’m guessing, especially if you are a regular reader of my blog, that you feel somewhat similarly.

Now I get that circumstance, personal or financial, can sometimes make having great adventures more difficult or impossible. Having been in the personal circumstance where any form of travel was physically impossible – I get it. I also get just how frustrated I was. I may not have had the ability to do much more than sit on the couch but I still watched travel documentaries – do it via somebody else if that is all I could do.

For me it was obvious that when I moved to India, many (although by no means all) of my friends would excitedly think, ‘Whoooo, whoooo, just the excuse I need! I’m off to India!’,  expecting my friends just to inform me they were coming rather than even waiting for an invitation or permission! Now Colin visited me in October although only for one night – he was here for work. While amazing to see him, I don’t think that is what I had in mind.

The first friend to visit me however was unexpected – well kind of! She has got a just go for it attitude so perhaps I shouldn’t have been surprised when she informed me she was coming on a visit. Her visit however could never have been a spur of the moment decision for her and for purely personal reasons. There was no way she could have just booked her ticket and then thought about the trip later. I can do that, my friend Sarah who I mentioned in a previous blog can do it – but not Gillian! Her decision required bravery and determination.

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Why? Gillian has Cerebral Palsy and this brings its own challenges – walking, balance and fatigue to name just a few. This blog however is not an ode to Gillian – although her bravery and determination indeed justifies an ode to her! This blog is an ode to India.

India can be so unutterly frustrating! It can bring the very worst out in you. You get so frustrated at short-term thinking, false promises and under-achieving, never mind the ‘it’s not my fault’ lack of responsibility taking. Seriously, why I haven’t been jailed for killing somebody in the year we have been here sometimes astounds me!

India however has done itself extremely proud! It can hold its head up as being one of the best countries in the world. Gillian is from the UK, has a German mum and has travelled around Europe and Australia. Without doubt, she says, India treated her better overall than anywhere else she has ever been. Now she’s not referring to the great access everywhere and the smooth pavements – well now she couldn’t really could she, given they don’t exist. She is talking about the people.

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Datta, our driver, is ready and waiting when Gillian arrived

From arrival to leaving she was met by extreme care from friends and strangers. Nobody but nobody on the streets or in shops / restaurants made her feel uncomfortable or made her life more difficult. On arrival in Mumbai, my driver anxiously helped the very, very tired and stiff Gillian into the car in Mumbai. He then spent too weeks worrying that he had touched her because knowing she prefers to do things herself, I had silently indicated to him to give her space. While Gillian will just remember this (if indeed she can) as somebody seeing somebody struggle and doing what they can to help.

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Maggie making Gillian a yummy traditional South Indian breakfast!

My maid, Maggie, the first morning after she arrived went out of her way to tell Gillian that anything she needed at all to let her know and then made her a gorgeous breakfast.

We went to lunch in Ram Krishna restaurant in Camp, the waiter without saying anything or making any form of fuss pulled the booth table out as far as it would go so that Gillian could walk to the seat and not have to slide around. Now Gillian is more than capable of sliding around but that instinctive / spontaneous act was heart-warming.

She wanted to try a pair of trousers on. When she got into the changing room there was no stool but within micro-seconds one arrived – not a word was said, it was just left in the room. Again no fuss. Just a recognition that there was something they could do to make her life easier so why not!

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Rashid sitting as he explains about a temple so Gillian could also sit

When we did a walking tour of old Pune (Chalo Heritage Walks – my lost blog was about this tour), Rashid Ali, the tour leader, couldn’t have been kinder. He constantly found places for her to sit and rest, when she had to take her shoes off to go into a temple, he got down on his hands and knees to put them back on.

There was a really high step into the temple and initially Gillian struggled to get up it. Seeing her struggle, a lady ran across the temple and offered to help her.

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This was the lady who stopped Deborah so Gillian could get by

Later in this same temple, my friend – Deborah (the photographer from my last blog) said that as she was leaving the temple an old lady stopped her so that Gillian could get by. Again, not really necessary but very sweet.

A few days later with Rashid, we went out to Bhigwan Dam which is a nature sanctuary – amazing, if you live in Pune you need to do this. This required the use of a fishing boat. The boatman without saying anything moved his boat so there was an easier spot for Gillian to climb in. When we were required to get off the boat and walk to where we could spot some flamingoes, the boatman first scouted the flamingoes – just to be sure that Gillian wouldn’t walk all the way and not see anything.

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Our very kind boatman

On return, he moved the boat a little further so that she would have to walk less. Rashid jumped into the mud and got himself filthy so that Gillian could climb off the boat a little easier. When her stick made a small section of the boat dirty where she would have to put her hands, Rashid used his own hands to clean the area – again with little thought just spontaneous action.

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Rashid cleaning mud off the boat so Gillian wouldn’t get dirty

We saw the flamingoes but they were just too far away for my camera to take a good shot and Gillian was struggling to see through binoculars – this requires balance and good use of both hands! Rashid initially tried to help her hold them but on spotting a man with a huge lens on his camera, I asked him if he would take a photo to show Gillian – he did it with enthusiasm and a great smile!

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Big lens! This enabled Gillian to see the flamingoes a little closer up

In Goa, we walked to a restaurant along the road but we wanted to go back along the beach. To get to the beach however we had to go down some steep steps without a handrail. Gillian got a little scared but the waiter ran over and gently took her arm and led her down the steps. Again no big deal, it was just what you do!

I could list and list and list all day and all night the amazing individual things Indians did to help make Gillian’s trip a success but perhaps it is best summarised by Gillian’s own insight. She compared her experience her to her experience in Australia. In both situations she felt she got the same treatment but the difference was the motivation. In India, she genuinely felt it was instinctive when people stepped up to help her. In Australia, she felt it was because people were motivated by the understanding that you should help people – there was little instinct behind it. In India, she felt Indians didn’t feel like she was any trouble while in Australia she felt people thought she was making trouble for them.

The thing that had worried me most about Gillian’s visit and therefore was the greatest surprise was staring. I had warned her and warned her that she would be stared at and photographed – perhaps even more than I am on a regular basis. It is far from unusual for me to suddenly have blank strangers around me and somebody else taking a photo, sometimes with permission but often without. Gillian is used to being stared at in the UK but I was worried that here it would be too much even for her.

I was particularly worried about visiting the Gateway of India in Mumbai. I had been there only a few weeks early with my friend and it was the most intimidated I have ever felt in India. We were simply sat down and then suddenly there were 20 plus men taking pictures of us and they simply wouldn’t go away. We had to get up and walk away ourselves. Wherever we were around the Gateway people stared and stared at us. This was on a Tuesday, we were going on a Sunday when it was busier – I was worried!

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Gillian in front of the Taj Mahal Palace Hotel. Picture taken at the Gateway of India – nobody is staring! Seriously, nobody!

So before going to the Gateway, I warned her again. I really wanted her to be prepared for it – she even suggested that we didn’t go. I wanted her to see it however so we went. I couldn’t believe it, not a single obvious stare and not a single photograph!!! Indeed, that can be said for the whole trip. Her whole trip in India there was no staring or photographs! Honestly, I was stared at less over the two weeks that she was here than I have ever been. Clearly, I need to get my stick back out – it appears to make you invisible!

I lie, there was one occasion where she was stared at and stared at so badly that she felt so bad that she left. I live in a very expensive apartment block (society). The people who live her are 50% expats, 25% NRIs (so people whose parents were born in India but they weren’t) and 25% very well off Indians. People in this society as a whole are well off, highly educated and highly travelled. Yet, it was these very people who stared so hard that Gillian didn’t want to hang around in our garden anymore! I was thoroughly disgusted.

In my ignorance, I expected the poorer, less educated elements of Indian society to be the starers – well they surely haven’t received the same education about disability or perhaps even the same exposure, have they? The people who stared shouldn’t feel proud and these people shouldn’t hold their heads high – in contrast, they should hang their heads in shame. For they were the only people in two weeks who didn’t do everything they could to make India proud of them.

Gillian’s experience of travelling with a disability in India was just an isolated experience, perhaps she was lucky or perhaps that is just the way Indians are. Somebody did tell me that Indians would look at Gillian with lots of respect because despite her disability she was still here! I have no idea if you are disable or your child is and you travel to India will you have such a hugely positive experience but if you are thinking about it, I would say from my experience with Gillian – go for it! India is not an easy place to travel never mind if you are travelling with a disability but I genuinely feel that you don’t need to fear how people will react to you being here.

India is definitely somewhere to book with excited anticipation (but just a little bit of nervous anticipation!).

Finally, India thank you. Thank you for being a major part of my friend’s holiday of a lifetime. Thank you for consistently showing her what an amazing country and an amazing people you are. Thank you.

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.

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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.

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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?

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Family

Sometimes with this illness you are faced with challenging decisions that have a direct impact on your health. Those decisions I've noticed usually revolve around having a semblance of a 'normal' life. Sometimes the decision is easy, your health must come over everything, at other times it is more challenging.

I personally feel that having a semblance of a life is crucial to my health. Without it, I believe the slide into isolation and introspection could so easily begin. So every weekend I like to try and meet some friends for a drink at our local pub (bless them, they are happy to go out of there way to meet me somewhere local) or go for a short dinner. This has to be prepared for by a day in bed in advance and often a day in bed the next day. If done properly, there isn't such significant pay back that it no longer becomes worth it.

This weekend however I was shown just how important having a semblance of a life is. I was also shown although this illness forces me to consider it every moment of every day, life continues irrespective. It was my aunt and uncle’s 50th wedding anniversary. They were holding a big party in the New Forest in the south of England. My mum and dad flew over for the occasion. My mum, 50 years ago, had been their bridesmaid.

My aunty, although delighted that I wanted to come, was concerned as to whether it was a good idea. This, however, in my opinion is where having a semblance of a life becomes incredibly important. My husband has taught me in the years since we met just how important family is. He has taught me that being there for your family is one of the most important things you can do. So, I was not going to miss it, I didn't mind if I had to have a week in bed if it meant I could do something for my aunt and uncle that would make them feel happy.

My mum was the youngest of 12 and I have 100s of cousins (only a very slight exaggeration). My identity is greatly influenced by this huge Hogan clan. It was with great sadness therefore that we learnt that my uncle, Liam, the oldest of my mother’s brothers and sisters died unexpectedly on Friday night. My decision to go to the party suddenly became even more important. It was a hard night and day for my mum and aunt and anything I could do to support them mattered. For once, I turned off my need to pace and turned on my need to be there for them.

I don’t know if I singularly made a difference to my aunt's night. I do know her being able to look around and see her children, grandchildren and her niece (who was also bridesmaid to her daughter) will have made her happy. I am pleased that I could be part of that.

Sometimes though we are faced with challenging decisions that challenge us because it is emotionally hard to say no. My uncle will be buried today in Ireland and I couldn't even for a second consider going. It would have involved a flight, a taxi, a train, an overnight with my parents, a drive across Ireland, then the standing at the funeral, a meal with my family and then the reverse of the journey home. I would have collapsed and been a burden on my mum just when she didn't need it. I find it very sad that there was no decision to be made but I will be there for my family albeit at a distance.

So I plan, for as long as I am able, to be there for my family when it counts and when I will be able to plan in advance how I will physically do it. This will mean that I won't always be able to be there for them e.g. a funeral where I would just be a burden. I'm lucky, my extended family are just incredibly grateful for my even expressing a wish to do something, I know they will understand when I say I can't.

I keep returning to a thought that saddens me beyond words. As my husband said yesterday, it is only when you compare yourself to other families that you realise just how supportive and caring your own family is. Yet daily I read stories about M.E. patients abandoned by friends and family because they 'can't come out to play' or because it was felt they should have been there at for example a family wedding irrespective of their health.

A lady wrote yesterday on an M.E. forum that today she won't get a Mothers Day card because her daughter doesn't believe she is really ill, that she is putting M.E. on, her daughter no longer speaks to her. That saddened me so much. For surely, even if her mother was 'putting it on', her daughter no matter how hard it was should still be there for her. As somebody else said, "even mental health patients deserve respect."

So today I am incredibly grateful that despite having to make challenging decisions in relation to my family, I do not have to make them in fear that they will abandon me. This support gives me the chance I need to get back to good health.

30ish of the Hogan clan cousins!

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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. 🙂

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

Opps this is a long one 🙂

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What has happened to M.E.?

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

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

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

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

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

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

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

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

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

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

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

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

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

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