Thing's I learnt in clinic: Physiology

Just look at how much technology has advanced in the past thirty years, well even longer but it has certainly progressed rapidly in the past few decades. How many times have you bought a new phone only for a newer one to come out the following week? Technology has become an integral part of our lives. We have countless methods of communcating with each other, mobiles, email, text, Facebook, Twitter, Whatsapp and Snapchat to name but a few. Gone are the days where you would spend an embarrasing 5 minutes talking to your friends parents on the phone before they handed you over to them and then you had to talk really quietly so that your own parents didn't hear what you were saying, whilst seeing how far you could stretch the cable.  What a dating nightmare! Then if someone rang you during your favourite tv program there was the option of being rude or face missing it. Thank goodness for the invention of sky plus. Although it has made it difficult for me to sit through a film at the cinema and not be able to pause the film whilst I go get a cup of tea, not that I am making my own cups of tea at the moment but you catch my drift. Plus I wouldn't have a cup of tea at the cinema because that just seems strange. Can you even get tea at the cinema?

Everywhere we look we are surrounded by technology from the sat navs in our cars to pioneering surgury, skype to faster travel and it is all claiming to make our lives easier, to bring people closer and to have a world of knowledge at our finger tips in a matter of seconds. Certainly I would not do without my phone right now, especially the amount of times I have to text my Mum to get more painkillers or something else when my legs and back cry out in pain and I have no way of getting out of bed. Okay I know what you're thinking- just have them by my bed, but I do and then I need more and my brain is so useless at the minute that I often forget what tablets I've had, so they need to be monitored. As naughty as it is the internet is also helping me through the painful nights and bringing you this blog. Our lives are constantly on the go these days and technology encourages us to do several things at once but in all this fast moving develoment and constant change it is easy to forget that as human beings we have not evolved all that much.

So let's travel back in time to visit our Paleolythic ancestors. Now I have just tried to do some research on this (again thanks to the wonders of technology and Google) but so far it is a bit obsessed with the new paleo diets, which does sort of tie in with what I want to say but actually just shows the world's love affair with fad diets. However whilst we're on the subject of food, spare a thought for our ancestors who couldn't just go to the kitchen and open the fridge to get their dinner, or pop to the local supermarket. They had to hunt and scavenge, often for long periods of time and then they would need to kill and prepare their finds. Food didn't just come to them or if it did there's a good chance that they themselves would be dinner. These labour intensive trips to find sustenance were the cavmen's prime source of exertion: other than pro-creating and avoiding being eaten of course. This sense of danger meant that sustenance was all the more important as well as rest and not exerting themselves besides hunting. This was so that if danger did come along they could try to flee, triggering that natural fight or flight instinct that has in essence kept the human race alive.

Coming back to the present and although our technologies, landscapes and lifestyles have changed dramatically our physiology has not. Deep down we are still programmed to rest (not sleep, I will get onto that in my next post in this series) for long periods of time and conserve our energy and of course we still have that fight or flight mechanism. Only now we are less likely to be eaten by a wooly mamouth. However the busier we become the more we are tuned into the fight instinct. This could be applied to something basic such as fighting tiredness to watch your favourite show. No one wants to hear about it on Facebook or Twitter do they? And they can be difficult to avoid. Perhaps there should be warnings like on the football scores. "If you don't want to know the score then look away now." Or you could be fighting something much larger like grief or illness and are doing everything in your power to carry on as 'normal.'

Can you see how this connects to having M.E? The more we fight those natural instincts and rest less the more out of tune our bodies become. Until for some of us we develop life altering conditions. Our levels of cortisol, which we need for adrenalin lower, causing our bodies to panic as we don't have those natural reserves that we would need if a wooly mamouth did stop by. Of course we probably would naturally think 'run' but how far we would get is another question.

This brings me onto post exertional malaise, which is a posh medical term for describing feeling tired after doing something and perhaps feeling unwell or in pain too. As much as M.E is about feeling constantly fatigued and unrefreshed it is also about being in a state of post exertional malaise. What is worse is that we don't just feel like this after a long day at work, great night out or a gym session. Because most of us can not even imagine doing those things. Just the simplest of tasks like washing, getting dressed or preparing meals leaves us in a state of post exertional malaise that could last for hours, a day, days or sometimes weeks. At our very worst just the slightest movement will induce this state. Meaning we need help to go to the bathroom, bathe and be fed. These very simple tasks leave us feeling like we have done a full days work or completed a marathon. It can be particularly difficult and admittedly annoying when someone says to you "Oh yes, I feel like that today." Someone without a chronic illness that is. Because at least their tiredness is waranted. They can not relate to just feeling like sleeping for a whole week after simply managing to get to the bathroom. The closest analogy that I have heard that describes to others what this is like is to imagine that they are running a marathon with the flu.

So our lifestyles are forever moving faster and our expectations grow the further we move from our natural physiology. Of course our ancestors never had to worry about paying bills for their neccessities such as food, a roof over their heads or clothes, which for many of us has become the root cause of our exertion. We have to work to earn enough to live. Nor did they live it up as the Volvic adverts suggest or go bowling like Fred and Barney. Although of course this is all good, we need to enjoy life and counteract the hard work. However the more we do so the more we exert ourselves even more. However as a species we aren't equipped to function well like this. Many people are but again are they simply looking after themselves better?

Of course though we live in a different age and I for one would rather live now than back then. It sounds rather terrifying and boring. Expectations now are at an all time high and to balance this people are looking more and more to leisure activities and their social lives but this too can take it's toll. Leisure certainly doesn't have the same meaning anymore. By living in this era though and having M.E there are more ways to help, like skype to see your family and friends, online shopping, whileing away the time watching tele, researching, writing this blog and let's not forget that wooly mamouths are extinct, which is good as my wheelchair doesn't go all that fast.

Thing's I learnt at clinic: Cause

Now before we begin let me just stress that I am obviously not going to talk about a definitive cause in this post because sadly as we know there is none and if there were then everybody would be doing their best to avoid developing this condition and we would potentially have found a cure. M.E can hit any body at any time, even children. It is more prevelant in the northern hemisphere and therefore generally but certainly not always in white people or caucassians. No matter how many medical tests that you have they will generally all turn out 'normal' or 'negative' and so you beat your head against a brick wall over and over again, wondering why then we feel like we're dying, that we sleep all night and day but still feel as though we haven't had any at all and ache from head to toe.

In my last post about personality I listed a series of statements that referred to doing things well and feeling a need to do things for yourself, which had a high response level amongst the attendees of the clinic, not just in that session but in others and enough for them to include it in the course syllabus. Perhaps there is something to be said for certain personality qualities being a contributing factor. Then again not all people that have type A tendencies are likely to develop M.E. I have a friend that has many type A attributes, she hates doing nothing, is constantly on the go, thinking about lots of different things at once and is many many things to many different people: Always more than willing to go out of her way for people, as well as working a busy job and travelling the country. But will she get M.E? It's certainly debateable and I surely hope she doesn't. Afterall we never truly know everything about a person, as well appearing to live life at full throtle pace they also may be more conscious of looking after themselves and take more time to unwind. Or be healthier. We just simply do not see it. Some people though can just live like that, simple as.

People can also usually track the onset of their M.E to a certain event, no not a party, but a certain trauma such as illness, virus, injection, operation, grief or bereavement after which they notice that they are not healing or recovering as expected. Often we do not allow ourseleves the time to recover fully either. Especially if it is taking longer than we thought it would. We stress about getting on with our lives, that the children need looking after and the house is a tip. That we have jobs to get back to and deadlines to meet. Especially in todays competitive job market. It is easy to feel that you are replaceable, that someone else is waiting to step into your role. Again apparently this is a type A thought process. Companies too are getting stricter about absenteeism, creating fear of getting a warning. Ultimately this means people are trying to rush their recoveries and in turn are not allowing their bodies to restore properly before returning to the rat race and straight back to pushing our bodies and minds hard. These traumas though are not something that we should rush even if we are risking diciplinary action. It is not as if you're hung over or are wagging to watch the World Cup. This is exactly what I did. Although I had been rushed to hospital 6 times with suspected appendicitis and was still in pain I was assured that nothing was going to explode, in fact back then they had no clue what it was, which meant lots of outpatients appointments and more tests to wait for. I didn't have time to wait for them and just do nothing, nor did I want to so I just tried to work through it. To enjoy this life that I had created for myself and felt so proud to have achieved. However the more I pushed the more my body pushed back. I have talked about me falling down the stairs, getting a nasty infection in my face and how my body went into utter melt down when my Mum was ill as well. Until I was caught out big style and my body and mind literally felt as though they had switched off and that has been a battle ever since.

So what I am trying to say is that people stretch themselves to thin and then life happens and you get stretched even more as your body is consumed by a trauma. Many people believe that they had Glandular fever before getting M.E and this has been the topic of much research but again there has been nothing definitive proven. Then you try and push through it but in doing so our bodies become susseptible or our immune systems weaken. Of course though it is not as simple as that because otherwisse a lot more people would have M.E and this does not explain why children get M.E because sadly there are many child sufferers. I am just reporting what appears to be a common factor in many M.E sufferers but again is that just down to this busy world we live in?  What else makes us susseptble is unknown  and the subject of much research. Is it a sleep condition? Is it in our genes? In our blood? Or our nerves? Whatever it is seems to be very good at hiding but let us hope that one day it will be found out and then we can start developing a cure.

Thing's I learnt at clinic: Personality

I was really nervous about going to the M.E clinic at first. I thought that I would turn up and everyone would just look horribley ill or be in wheelchairs. I was stil quite weary about meeting others with the same condition back then, somehow I thought that it would just make it too real. I'm not too sure how to explain it or why I felt that way. Call it denial or perhaps even fear: a fear of what was perhaps to come for me: a fear of not being able to relate to anyone else and an overwhelming fear of falling asleep during the session and seeming incredibley rude. I even joked that the waiting room would be full of people fast asleep, strewn out on the seats, like when you see elderley people fast asleep on their sunbeds on holiday with their mouths wide open and a book on their chests. However I got there and everyone seemed well 'normal', the epitomy of that tiresome phrase 'but you don't look sick.' I have since discovered that this is what is known as a spoonie. According to the Urban dictionary www.urbandictionary.com this is the name for a person that suffers from a chronic illness but doesn't look unwell, according to Christine Miserandino's spoon theory. More accurately this theory describes what it is like to live with a chronic illness in comparrison to a healthy person but I will go into that in more detail in a future post as it is very apt and could possibly fill an entire post. Anyway less about spoons and more about clinic. It was only when I heard people checking in at reception for the M.E clinic that I could tell what they were there for. The others I couldn't tell whether they too would be in the group or waiting to be called through to a podiatry appointment. Somehow this relaxed me and I began to hope that the group would be less about comparrison and "who has it worse" and more about support and insight.

There was 10 of us in the group, 9 females and 1 male. Lucky man right! Well not really no as he was blighted by M.E of course and if I was feeling like I couldn't relate to anyone then I definiely bet he was too. Apparently though this is a common occurence as statistically the composition of M.E sufferers is made up of 80% women. So why are women more likely to have M.E? Not wishing to alarm any ladies out there, so please do not scare yourselves. Could it be down to stereotype? That our personalities are so different to men's, the whole Men are from Mars, Women are from Venus concept. Well let's examine that: or more accurately let me relay what I learnt about that as the post title sugests. Now if anyone thinks that people with M.E are just plain lazy, can't be bothered or 'lucky' that we get to spend so much time in bed or resting, or not work then think again. Before most people develop M.E they are hardworking, successful, dedicated, compassionate people that will always strive for the best in everthing that they do for themselves and others. We take on many roles at work and at home, being many different things to different people. For example Mothers, Fathers, housekeepers, Husbands, Wives, bill payer, worker, boss, friend etc etc. The list could be endless. Generally someone with M.E will have more than 3 roles that take up a significant proportion of their time. This is where the theory about why more women than men develop the condition could stem from as women seem to take on more roles than men. Modern women in particular are striving to do everything and be everything to everyone. No longer shackled to the kitchen and surrounded by constant media feeds about successful women. We are almost programmed to think that we can take on so many roles, at home, at work, with family and friends. Blending being successful at work with being a home owner and family woman, domestic goddess and having an amazing social life. And why shouldn't we? There are plenty of women out there proving that women can have it all if they want it and good for them. Let's face it in this economic climate how many people can afford not to work or rely on government money? However for some of us we simply get streched to thin, playing all these roles and often putting others needs before our own that we neglect ourselves and never rest. So stereotypically, without being sexist as there are plenty of men out there that can identify with this, not the being mothers and wives bit of course though, it is easy to see how women fall into this category. The idiom A woman's work s never done springs to mind.

Whilst we were in clinic on that first session  we got asked how many of us identified with the following statements:

" If something's worth doing it's worth doing right"

"I've started so I may as well finish"

"I'll do it myself, I'll only have to check it anway"

Hopefully you catch my drift I have been trying to remember them and then think of similar phrases of a similar effect but my brain has gone blank. Basically they were phrases that suggested that only you could do it and that things can't be left half done or completed half heartedly. For example if someone else has done the hoovering then you may feel like they haven't done a good enough job and that you should have just done it yourself so that it would be right. When asked how many of us agreed with these statements though all of us put our hands up or the majority at least.

It could be argued that this means we have what is known as type A personalities. A type A personality is a term that was coined to describe ambitious, highly driven, successful people. Back then it was generally associated with business men but now more and more women are fitting that description. It also has negative connatations such as being highly strung, impatience and having agressive tendencies and has therefore been the subject of many studies into heart disease. But before anyone goes off into a panic because they have type 1 tendencies and fear having a coronary this research failed to take into account  diet and age and it's main demographic was managing directors etc. Plus we all know that stress has a negative effect on the body. We are simply not designed to cope with constant stress. 

Personally I know that I have a lot type A tendencies, well I say have but I am mostly referring to before the onset of M.E. Now of course that's just a bit too tiring and there is less stress. I was hardworking, constantly on the go, striving for the best for myself and going out of my way for others. I rested only when I slept and even then would sometimes wake up in the night my brain full of ideas and I ate and worked at the same time. Never able to just sit and watch the tele without doing something else too. What's more I chose to work in a demanding job, with lots of responsibilty and deadlines to meet as well as looking after others. It was both physically demanding, with long hours and heavy lifting but also mentally intense with lots of paperwork and health and safety assessments to complete. All very type A characteristics. But I loved it, getting there had  been my sole focus towards the end of my degree and as I have said it broke my heart when I had to stop and in accepting that role is a long way off my current capabilities. However I cannot relate to being highly strung, overly impatient and I am definitley not agressive. In fact I'm far from it, I'm pretty placid and nice and many a person would say quiet. That is not to say I'm a push over, I'm determined and quietly confident but have no problem in standing up for myself. Especially the more I found I was good at what I did. It made my confidence soar. I just don't fly off the handle and I have never particularly wanted to be loud or extravert to show my confidence, that just isn't me. Strange for a theatre student! I can head up meetings and give orders but I am more fun loving than a show off and unless I have to raise my voice then I won't. I often think that those that shout the loudest or overly show off are masking themselves. As for impatience well I can happily be in a cue unless I'm busting for a wee and can wait quietly in a waiting room- except the time that I had a major panic attack and was pacing the floor. I would say that these qualities are also true of the other people I was on the course with. No one seemed to be confrontational but everyone appeared to have busy lives, at work or home and identified with the above statements. In fact many of us could not see what was wrong with them. Why shouldn't we do something well? Or make sure a task is finished. Wasn't that normal? Apparently though it is only a select section of people that are switched on to this way of thinking. I still don't really see it as necessarily a bad quality but obviously M.E is beating that right now and I can recognise how it doesn't need to apply to everything. If someone else wants to do something then let them. Without checking or redoing. Of course I could be wrong about my fellow course attendees but that's how it seemed. Some people were more outspoken than others but then we were there to get help, desperate for answers about this maddening condition: it was a good time to be outspoken and if we are angry then it's because M.E has made us so. 

I will admit that I was one of the more outspoken ones because I wanted to get as much information as possible. They had got the nail on the head about my personality but I was adamant that these were good qualities and that I was so proud to have a degree that I had worked so hard for and stepping into a consuming career. When I got home I was absolutely shattered. The sessions can be quite heavy going. It's a long time and there's a lot to take in, not just from the clinicians but from the other members. I also remember that shortly afterwards when I started to digest the information more I got really upset because I thought that I had somehow brought M.E upon myself by being the way I am and I blamed myself badly. This of course isn't true, you can't bring M.E upon yourself. I just had to remember all that I had achieved from having those qualities and how I enjoyed helping others and there is certainly nothing wrong with being happy with yourself. In fact it's really important, especially after having depression and low self esteem. 

Anyway I hope that this has been insightful. Please remember that these are my personal experiences and some personal research. I am not a doctor or researcher just a sufferer who like many would love some answers. I'll be posting some more things that I learnt at clinic soon so keep watch.