Grump

Just a short post about the last few days because once again M.E is surprising me in new ways, how generous of it? Wow I have been grumpy these past few days. My sleeping pattern is all over the shop, mostly during the day though to be fair and it is driving me a little bit bonkers. Again I have been kept awake throughout the night in horrible pain in my legs and back, which makes it impossible to relax enough to fall asleep. So I have been mostly trying to get some sleep when I can or I'm just so exhausted that I have no choice in the matter.

Since starting these tablets neurontin I have also been feeling quite nauseous but it's hard to tell if that's just the tablets or that I am overly tired as well and not eating very well. M.E really does mess up your whole body. It feels like you try to deal with one thing but then something else rears it's ugly head. It is a non stop vicious cycle. Lately I have also been hypersensitive and not in the crying at the drop of a hat hypersensitive way, although I have been close to tear on a few occasions where I've not had enough sleep and I'm just lying in an exhausted heap. It feels as though all my senses are just on overload. Obviously there is the pain but one minute I am sweating like a pig and the next I am freezing cold. I have become so sensitive to the cold that I have had to wear long pyjama bottoms and socks in bed. The other night I had a pair of 3/4 length pyjama bottoms on and my legs were really cold. It wasn't even a cold night. But because they were so cold it made my legs stiffen up and hurt all the more and just that sensation of being cold was keeping me awake. It's weird. I've never had that before, not even in winter. My hearing too has been on over drive, everything just sounds 10 times louder than it usually would. It hasn't helped that my next door neighbours daughter is moving house and they have been packing and moving and slamming doors for 2 days from 7am. Then tonight they decided to have a party next door. Ahhh have it in your new house!!! See I am a grumpy bum. Of course they should be celebrating and it wasn't all that late. Then at the same time there was fireworks going on over the road. Honestly I was ready to just break down. What an absolute party pooper. If I could walk better and wasn't on my last legs with exhaustion I would have had the mind to go round there and just cry in their faces. Oh dear me. I very rarely get like that, only if  I have one of those really bad migraines where the whole world must stop and be quiet but for the last few days there has been times where I thought people were out to get me. Even the fridge! Honestly it has been so loud, well what I am perceiving to be really loud at the moment that last night I thought that someone was playing really loud music. When I went to investigate and found out it was the fridge I was a bit shocked and slightly embarassed.

At times my heart has felt like it has been racing too and just thumping in my chest, mostly when I am disgustingly tired though. But how are you supposed to sleep when whenever you lie down you can hear your pulse in your ears and your chest is jumping. It's impossible. Then you get all the more frustrated and tired and your pulse quickens. It really is a vicious circle and can be really scary. Especially when you have'nt experienced that symptom before.

It just goes to show I guess how much we need to sleep healthily. It really does affect us in strange ways and turns us into people we do not recognise. Then add that into the mix with M.E and who knows what you're going to get. Everyday  is different and a learning curve and when you start to experience something new it's easy to feel like you are right back at square one or just curse "what now?" And when you are overly tired it just becomes even worse.  However onwards and upwards with the fight. At least I can laugh now at my Diva strops at the fridge. "How dare 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.

Have you tried... getting pregnant?!

Recently I have heard of a very strange yet natural so called 'cure' for M.E/ CFS and that is to get pregnant! This news came to me via my Nanna, of all people. She'd heard of someone that was suffering from M.E and then they got pregnant and gave birth and apparently their M.E has disappeared but this is not the first time I've heard of this either. But before I rush off to the nearest sperm donors, thankful that I am not a man I thought I'd do some research into these bold claims, that seem to be too good to be true.

According to www.njcfsa.org/FACTPREG.tml a third of women who go through pregnancy whilst suffering from M.E/ CFS will show signs of improvement during their pregnancies, due to the extra pregnancy hormones rushing around their bodies and giving them more energy, generally after the first trimester. However before anyone starts skipping pills or pricking holes in condoms they also noted that a third of women's M.E symptoms remained the same; whilst unfortunately another third actually became worse during their pregnancies and especially after the birth. Often these women needed complete bed rest throughout their pregnancy and a lot of help once the baby was born. Furthermore some women that experienced an improvement in their M.E symptoms also relapsed after the birth and the pregnancy hormones have gone but positively some continue to improve. Once the baby is born of course your level of responsibility rises and your needs become secondary to those of the baby, creating more tiredness and neglecting your own needs, which can trigger an M.E flare up. What do you do when your baby is crying but your M.E is also acting like a needy child, desperate for your full attention? You can't ignore the baby but also it does no good to ignore your body, because as we know M.E will soon get your attention in another way. So are these people who claim to have got better by having a baby simply mixing up child rearing fatigue with M.E symptoms? Not wishing to discredit them of course and of course their is evidence of some improvement for some period of time.

For me however just the thought of having a baby whilst suffering with M.E is far beyond me, I simply can't fathom it or begin to see how I would cope let alone raise a child. Let's face it just the thought of  'babymaking' is tiring enough. I simply do not see how it could improve your M.E. Firstly the actual carrying a baby, I can hardly carry myself right  now and then of course there's the morning sickness and all your 'goodness' so to speak being devoured by the growing foetus. Would it not be fatigue upon fatigue? Then of course there is the birth itself. The link above also describes how most women will need a higher amount of pain relief and of course becoming too fatigued to push, which has resulted in many forceps births or cesareans. Due to this women are also more likely to need to stay in hospital after the birth for longer. Then of course you have to raise the child, nurture them and look after them possibly for the rest of  your life but this must be extremely difficult when at times you can't even look after yourself. Even after some improvement there are bound to be some flare ups in that time as your responsibilities shift because again as we know and I keep banging on about there is no miracle cure only management systems. Surely there must be some degree of of guilt that you can't help them as much as you want and I imagine there would be some level of depression involved. Personally all I would want to do would be to give them my full attention and be the best parent that I could be. Just like my parents have done for me and my siblings. If anything it would make me feel worse about  having M.E. Rosemary Underhill the author of the above link does note that any improvement shown during pregnancy usually dissipates once you begin caring for the child. Just look into the eyes of any any 'healthy' new parents and you can see the affect a new addition is having on their lives but add that to the consuming fatigue of M.E it just seems incomprehensible to me. How could I trust myself not to fall asleep whilst feeding the baby? Or what if my legs gave way while I was holding them? These thoughts terrify me but I doff my cap to any parents that are suffering with M..E no matter how old your children or whether you developed the condition before or after their birth.

I have looked through a forum on www.mumsnet.com about pregnancy and M.E and there is a mixed response. Some Mums have indeed improved and are luckily able to enjoy a fulfilling life with their child/ children, which is encouraging and lovely to hear. Whilst sadly others have reported that their M.E has become worse. All of them though said that they could not do it without a strong network of people to help. Family and friends and even social care if needed. Husbands to do night feeds. Relatives on 'watch' as you rest, or to cook and clean for you. Apparently this is common in Greek culture, although they have very little idea of what M.E is. I'm just showing off what I have learnt today. It's about saying yes to as much help as possible and not trying to tackle it all yourself, which is much the same as coping  with M.E. As much as you need to accept help though you also need to be able to be strict about saying no. For example saying to people that they can't just drop by when they want as you need to rest.

What was sad however was that during their pregnancies not many of their midwives/ doctors took much notice of the M.E. Usually any fatigue that they were experiencing was classed as 'normal'. Some of the mothers did need to be put on bed rest which Rosemary Underhill did suggest is common. Again it's about finding people that understand and will help you through and make sure that you and the baby are safe and healthy.

So there is 'some' evidence that pregnancy can improve M.E but how long for is debatable and just as long a you are in the lucky third of people that do show signs of improvement. Does this make me want to stop writing though and ask someone to impregnate me? No, it doesn't. Firstly, asides from the reasons I've already mentioned because my M.E has taken a turn for the worst lately with the possibility of having fibromyalgia as well. It seems a long way off being 'managed' which Underhill suggests is best for anyone wanting to get pregnant with the condition. Secondly the way things are I cannot offer a child all the things that I would want to give it, not just in terms of being born into a loving partnership or financially but because I need to focus on putting my needs first, which has taken me a long time to have to do and is necessary to coping with M.E. Finally and probably most importantly, because I don't really think that I want children anyway, even before I was diagnosed, having children was never high on my list of priorities. Don't get me wrong I love kids and would probably make a good Mum but so far I have not had an overwhelming desire to have children. Perhaps one day that will change but who knows? For now my focus is on adapting to this new way of life and also trying to enjoy it as much as possible. M.E can affect many women in their prime child baring years, which obviously can cause that debate between should I risk it now? Or wait to see if I improve? By which time it may be too late. It's definitely not a decision to be taken lightly as it shouldn't be anyway. At the end of the day though as ever only each individual knows what is best for them and what they can cope with and I have the ultimate respect for those that do manage to have so called 'normal' lives and successful pregnancies, which as research has shown is perfectly possible. It's definitely inspiring. I am in no way pessimistic or doubtful as to whether these women that claim to have made a dramatic improvement during or after pregnancy "clearly did not have M.E". In fact I'm happy to hear that people out there are managing their M.E and are able to get back to work or have children. However it's not something that I will be pursuing anytime soon, as much as I want to get better. For now my bed is for sleeping. Sorry Nanna.

So you have your diagnosis now what?

So you're at the point where you have just been diagnosed with M.E/ CFS and can let out a small sigh of relief that there is a name for this monster that's been attacking your body and that it is definitely not all in your head. I'm sure there are very few people that could conjure up this all encompassing and debilataing condition unless they had experienced it. This is not a let's draw some red spots on with your Mum's lipstick and warming the thermometer on a hot water bottle type illness. Although it would be interesting to see Daniel Day Lewis go all 'method' acting for a role about an M.E patient. Then again they'd never get him to set. Anyway now that you have this diagnosis what do you do with it? Who do you see next? What medications do you take? Essentially what do you have to do to get better?

Oh if only we were given a magic lamp upon diagnosis! Because as I have said and as many of you will know all to well, there are no set answers to those questions. The medication that you take depends on the symptoms that you present and using a system of trial and error to see if they offer you any relief or make you feel worse. And symptoms can vary all the time, whether as part of the M.E or side effects from other medication. For example I need to take anti-inflammatories to manage my pain however most anti-inflammatories have an adverse affect on my stomach meaning that I need to take other medicatin to counteract this. This is made worse by the fact that I have a hernia so I have to be careful of that and have had to test different types of pain relieving tablets that manage the pain and do not upset my stomach. Sometimes it does feel like asking 'what would you rather have? This or the side effects?' But keep striving for what works best for you and your body. We suffer enough as it is without anything else being added to the mixing bowl. Who eles has a handbag that resembles a chemist shop?

As for who do you see next, if anyone at all, it seems to be very much a case of a post code lottery and depends on what services are available within your area. This is where you find out how much your local health board acknowledges M.E/CFS. Information on this can be found on www.meassociation.org.uk/?page_id=1382. They note:

'Please remember that while patients can contact any of the services for information, referalls for assessment, diagnosis and treatment must be made by your GP or the professional responsible for your healthcare.'

Also note that these are NHS services. The ME association has a database of support groups on www.meassociation.org.uk/?page_id=1185. As you can see it varies considerabley. Some areas have consultants with an interest in M.E and others have more specialised programmes or services that offer a whole body/ lifestyle approach in groups or individually. Sadly though some areas have nothing. I can only hope that in these areas that there are an abundance of good GP's that take M.E seriously and treat their patients with compassion. It is possible that you will only need to see your GP but again it depends on whether they are up to date with research and can see methods for improvement. Because this is what a consultant or service will offer you. Tested ways of seeing an improvement in someone's quality of life and a vested interest in wanting you to improve with their help. But there is help out there, don't let anyone make you feel as if there isn't. So it all depends on how you respond to different medications or methodologies or of course whether you want to look outside of the NHS.

Everything would be so much easier if there was a set notion of what M.E is? Or there was a typical M.E patient. But because there are so many variables it becomes harder to say what will help each individual and as I have previously mentioned our conditions are changing all the time too. Some people can continue to work whilst others need to cut back or not work at all and then of course everyones lifestyles are different and people are pulled in different directions. People have homes to run, children to look after, pets or caring for others and M.E will probably try to dictate these aspects at some point or another if not consistently. Sometimes it is like a needy child that will do everything it can to get your attention. Like when I was first diagnosed my legs worked fine unless I was extremely tired but now they are in constant pain. So this calls for me needing to access further help and maybe going through that whole rigmarole again of ruling out other conditions and probably landing once again at it's a flare up. It's not that you want anything more to be wrong. That really would be all. Just having a cold and M.E is torture upon torture but at least if the reason lay within the convines of "explainable" medicine there would be a better set of answers.

Surely there has to be something that is explainable. Why else would M.E exist? How can you go from feeling on top of the world one day to a crippled, exhausted heap the next without their being a "reason" for it? Because all your tests come back normal. Ahhhh it makes me so angry. M.E I hate you! I hope someday soon someone exposes all your dirty secrets and you are left quivering in fear as you are broken down just like you have done to me and so many others.

P.S I'm okay, not lost it just letting M.E know that it better watch out.