No regrets

AAAHHHH I typed out this blog post yesterday but apparently they won't save unless you have a post title. So here goes again. I want to share with you all a quote from Jojo Moyes Me Before You yes that book again but it has really stuck with me. So here goes:

Lou: Don't you think it's actually harder for you... to adapt, I mean? Because you've done all that stuff?

Will: Are you asking me if I wish I'd never done it?

Lou: I'm just wondering if it would have been easier for you. If you'd led a smaller life. To live like this I mean.

Will: I will never, ever regret the things I've done. Because most days if you're stuck in one of these, all you have are the places in your memory that you can go.

The other night I dreamt that I was trying desperately to gather up all the paraphanelia that symbolises some of the things that I have done in my life. There was horse riding gear and a horse that kept cuddling me, running gear, school books and lots of stagemanaging tools and steel toe capped boots. But try as I might I could not hold onto it all nor could I find some of it as it was burried under lots of other stuff. I even dreamt about being at the theatre and falling asleep. I am not one to usually give much air space to my dreams, generally because they just reflect the things that I have done during the day or hopefully will be doing in the next week or they are a bit too out there. However this dream really struck a chord with me. It is as though it decribes my life prior to M.E and for a time with it. Showing all the things that I have desperately tried to hold on to and all the things that have become lost in the midst of this condition.

As I have mentioned in the post things I learnt at clinic: Personality after I learnt that somehow some of my type A tendencies could have played a small part in me developing M.E I went a bit nuts. I was angry with myself for having lived the way I had. Always busy, always thinking and planning. I blamed myself for having M.E. I called myself every name under the sun, out loud in rage and tormenting myself with constant negative thoughts about myself and what I had done. It was only when I confessed these feelings to Mum because I did not want to go back to the clinic because they had made me feel like that, that she helped me to see the error in my thinking. Something that deep down I knew. Firstly, that medically or physically or scientifically, whatever way explains why someone gets M.E never says "it is completely down to a type A personality" and if it were then M.E would either be a lot more prevalent or people would be much more laid back to prevent getting it. Secondly, that there was nothing wrong with the way I had lived my life. Thirdly, that she was extremely proud of me for having lived as I had, achieved all that I had off the back of everything that had ever brought me down and how I am still smilng and wanting to pesevere. Finally, she asked did I have any regrets about all that I'd done before M.E, well actually lastly it was "you absolutely are going back to the clinic," which I knew I would anyway I just needed to let off steam.

But back to the point about having regrets and to marry in that quote. My honest answer is no, no I don't. I am who I am today because of everything that I have lived through, everything that I've took a deep breath and picked myself up by the bootstraps to do. That despite many health issues, grief and severe depression I still achieved what I wanted to. Despite some people saying that I couldn't. Despite my own head saying that I couldn't. I have said "no, there is more to life than this." It has made me see that if there's something that I wanted it was in my power to do it for myself. Life is for living and all that. Especially when you have been through rough times. I have tried to give everything that I had to what I chose to do and it's me that's done that. So not to blow my own trumpet but that's pretty amazing. I have achieved academically and seen places that I had dreamt of going. So no there are no regrets. M.E or not. That's courageous, that's determination and that is what is going to get me through this too. It is what I need. So it is not just about the things that I have done but how my personality has actually developed through all the rough times to help me through and let me fight for the good things. Surely that is no negative thing. Certainly it's difficult to remain positive all the time, who can? But I recognise that I have every right to feel down at times, to miss the things I've lost and had to give up. That's a normal feeling and I don't beat myself up about feeling that way. I just try to cope with it and talk about it before it all gets too much and spirals out of control. I dread to think what I would be like if I didn't  have the motivation or strength of charachter or even just the sense of humour to get through this. Back at being too frightened to step out of my bedroom. Back to feeling the need to self harm. I don't want that ever again. I can't regret it, because it's a horrific all conuming illness that takes no prisoners. But I can be proud that every time I have a tough day of pain and fatigue, or have to stay at home because I'm too ill or can't plan something or frustratingly when I can't recall certain words or form a coherent sentence. I can be proud that I don't want to physically or emotionally punish myself. I can get angry and not even have harming thoughts and that to me shows how strong I can be. How much my personality is an advantage to me now more than ever. So, no there are no regrets.            

I can't totally relate to the quote though (after all I am not manically depressed anymore and I'm not a quadripalegic) in that I don't solely rely on my memories to transcend me out of reality. Yes they're nice to look back on and relive occasionally, especially when you're lying in bed in agony. But there are plenty more memories to be made and things to look forward to. Even with M.E. Even with being in a wheelchair. Pre diagnosis but when I was pretty certain that I had M.E for I had suffered for 3 months without improvement. I was on holiday (perk of not being able to stay home alone) and we went on a boat trip. Off one island the boat moored and most people went swimming. I am petrified of deep water and although I can swim it is generally to a lilo if I'm not already on one. However standing there watching people swim and having fun made something in my head switch. I just thought "I am here, that looks like fun. When are you going to get to do it again? Who knows if I'll even be able to go on holiday again." I also reasoned it with " all these people won't let you drown." So, I did it. I got in the water (absolutely bloomimg freezing, why were people enjoying themselves?) Obviously I went down the ladder and not dived in I hadn'tchanged my thinking that much and I was terrified the entire time that I was in the water. But I did it. After that I knew that somehow I would deal with having M.E in as good a way as possible. Yes, I will occasionally throw my toys out of the pram but that too is good as I'm letting myself feel. 

I have actually even managed to go horse riding twice whilst having M.E, which is a big achievement. Once on a friends horse so I could take it easy and not push myself too much and actually I didn't suffer that much afterwards. Well actually I did but that was because off the back of horse riding I was feeling a bit invincible and I pushed myself too far and it was also my friends birthday. The second time was a bit different . It was far too much and far too long. It definitely made me remember how much horse riding can be hard work. I had huge bruises on my calves from gripping the saddle too much to try and give me extra support. But again I did it and in the process made new memories. The latter will definitely always be unforgettable as we rode out on a nudist beach and what was worse was that they were taking photographs of us. It certainly was an experience.

Well, I know I won't be horse riding or swimming for a while with needing a wheelchair but there are plenty of other things to look forward too when I can manage them. Even just doing my online Greek lessons. It's a new experience, it's challenging and if I ever did manage to go horse riding on holiday I will be able to say "can I stop please? I need to lie down." Going back to the dream. Yes things have become lost, my career and people that simply do not understand and especially a lot of my independence. With needing help to the bathroom and batheing. My world has had to become smaller in order to cope. In the quote Lou asks Will whether it would have been easier to have led a smaller life. Well at the time of coming back from that first clinic session I'd have said yes. It certainly is a big change and a case of polar opposites but like Will I have to say no it wouldn't have been easier. You should never regret living your life or living in caution because somethimg 'might' happen. As long as you aren't hurting anyone or yourself. I may be in a wheelchair, I may meed a commode in my room for when walking is just so sickeningly painful and I may rely alot on my parents for my day to day care. But there is plenty more living to do and plenty more buses to fall asleep on. It just has to be on a smaller scale and when I can. When I finished typing this post the first time I was off to my cousins for a lovely dinner and gossip in the sun and I had a great time. Yes I needed my chair and my legs were sore and yesterday I slept alot but I did it.

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.