Monday, 24 December 2012

Seasons Greetings

Just a quick post to wish you all a Merry Christmas.

So, we are nearing the end of another year. I tend to now live my life in terms of days rather than years, but looking back 2012 hasn't been all bad.

I have 'met' so many new and wonderful people over the course of this year, and my M.E journey would be much bleaker without them. My school and university friends continue to love and support me just as I am, and my family, well, I would be nothing without their unconditional love and care and strength and support...

For those who are on their own, for those for whom Christmas isn't quite going to plan, for those who are no longer with us...I am thinking of you all. Really I am. I hope everyone has something, however small, to smile about at this time of year. May knowing that you are not completely alone be a comfort to you. I hope you are all able to take pleasure from the simple things and let go of the stress and pressure that can come at this time of year. It's just another day afterall...

This may be my last post until the New Year as I may be much too busy consuming vast amounts of chocolate! Hard to believe I know! I'm usually so healthy...

I offer to you all my very best wishes for a healthier and happy New Year.

Friday, 21 December 2012

Tight rein

Our lives are so restricted. Im sorry if that's doom and gloom, but they are. When you have M.E you have to keep yourself on a leash so as not to over do it on the better days. You can't live a carefree laid back life where you through caution to the wind. As the clinic reminded us, you have M.E even on your better days.

You will always suffer to some degree for having fun and seeing your friends and pretending to be normal. Your body will kick and scream afterwards. You start to wonder whether doing anything is worth the pain and suffering...payback is more horrendous than the day to day M.E so you become tempted to hide away because you already have an unimaginable amount of awfulness to deal with. But I know I mustn't do that. In the long run, it will only exacerbate the other lovely factors that can come with M.E, namely depression and anxiety. I have not got depression (yet) but I was diagnosed with anxiety. I am now able to combat that.

You have to live with the knowledge that things could suddenly fall apart again at any moment. It's like living with a time bomb. Just because you've managed a day out of bed or managed to see friends for a couple of hours doesn't mean that you're better. I wish!
I try to enjoy the better days while they last, but I admit to living in fear of relapses and setbacks. If you've experienced one then you'll understand why.

We can't live each day as if it were our last. Life with M.E doesn't work like that at all. Not in the usual sense anyway. I try to live my days happily and well, but within my means. I suppose I give each day 100% but my 100% might be the same as a healthy persons 10%, or even less.

Today I'm feeling a little lonely and I'm also feeling at a bit of a loose end. I don't usually get bored (because I feel too poorly) but today I'm a bit fed up. Today the fatigue is my worst symptom, but because the brain fog is lesser, I am more aware of my loneliness and boredom. I can't afford to anything more than my baseline targets though, not if I want to give myself the best chance of enjoying Christmas. So I can't go to the supermarket with my mum, or see if any of my friends are free, or pop round to see my sister...I just have to 'be'. Even on my better days the M.E is still winning. I have to sit back and watch instead of joining in.

Alas, I'm well enough to cope with the TV today though so it's been a TV day...every cloud.

Tuesday, 18 December 2012

Chuckles

There are aspects of this illness that I find very amusing.

I've become more of a simpleton than I was before, and with my apparently unusual clothing combinations I certainly look the part according to my family and friends! I am officially classed as a vulnerable adult, but rather than see myself as a victim in a life I would not have chosen, I am able to look on the bright side. Laughter really is the best medicine. I am most thankful for my sense of humour.

Some people find the forgetfulness and incredible confusion upsetting and frustrating, but I find it mostly hilarious. Obviously M.E isn't a joke! But I'm glad I can still laugh at my own expense despite it all.

Since having M.E I get confused between what is real and what I have dreamt. My family and friends now know to take the things I tell them with a pinch of salt and they joke amongst themselves about how I can't be trusted to retell an event accurately anymore.

I am most likely to be found wearing my confused face, for I am very easily confused these days! Chatting online is great though as I can reread people's replies and work out what they're saying in my own time.

People have to repeat things to me more than once because it can take a while for Mr Brain to process what they're saying. Poor Mr Brain isn't always on the ball these days.

There was the time I shampooed my face instead of my hair because my brain got confused. Or the time I put the kettle back in the fridge instead of the milk after making a cup of coffee. Or the time I put my clothes on back to front and inside out, and it took me a while to work out that I'd gone wrong. I am always forgetting whether I've taken my tablets (the very tablets that are meant to help with my cognitive function and memory!!) I can repeat a sentence several times in the space of a few minutes with no recollection of having said it already. I use the wrong words in sentences. I often get my days wrongs and miss out days of the week despite keeping a diary and filling in my daily target sheets. Today it took me a worrying amount of time to work out why my coffee tasted so nasty. I'd forgotten to boil the water. Oh bless me! I could go on, but I'll save the rest for another day.

I used to be a bright spark. A much brighter spark anyway. Now, well, not so much!

Monday, 17 December 2012

Bravery?

I sometimes think this illness is harder to deal with the better you get. For me anyway. Does that make sense? Basically, in the beginning I was so incredibly poorly that I wasn't fully aware of the extent of the illness. Now that I am a little better, or now that the 'brain fog' is much improved, I can see things more clearly and am more aware of how poorly I am. I am more aware of the effect this condition has had on those I love the most. I am more aware of the misunderstanding and the stigma that comes with such a condition.

People say I'm brave. I'm not brave. I'm just getting on with it. This is it. This is my life. I'm not going to lie around feeling sorry for myself and blaming the world for my poor health. These things happen. Good health is sadly not a given. There are days when I feel I can't do it anymore but as my wonderful mum said to me once "Tough. You haven't got a choice." As always, she's right. So I have a good cry, brush myself off and pick myself back again. Every single time, I get back up again.

My blog is ultimately to help people understand M.E. But it's also for me. Throughout my illness I've written things down to get them out of my system and so that I don't forget and so that one day, hopefully, I can look back and see how far I've come since the end of 2010. I eventually thought, why not share it? So, lucky for you, I did ;-)

Guidelines

The Ten Commandments for M.E sufferers


- Thou shalt not be perfect, or even try to be

- Thou shalt not try to be all things to all people

- Thou shalt sometimes leave things undone

- Thou shalt not spread thyself too thin

- Thou shalt learn to say "no"

- Thou shalt schedule time for thyself and for thy support network

- Thou shalt switch thyself off, and do nothing regularly

- Thou shalt not feel guilty for doing nothing, or saying no

- Thou shalt be boring, untidy, inelegant and unattractive at times

- Especially, thou shalt not be thine own worst enemy. But, be thine own best friend



These were handed to me at one of the CFS/ME clinic sessions. I don't think they apply to just us sufferers. Maybe everyone can get something from them. Some are easier said than done but you get the idea.

Be kind to yourself. We are human beings, not human doings ;-)

Saturday, 15 December 2012

Breeeeeeeeathe

The human body is a wonderful thing. Well it is when it works properly...

I don't know the facts about how many breaths a human being takes on average per day, but I do know that for most of us it is something we do without even giving it a second thought.

There are times when I now have to consciously remind myself to breathe, or to breathe properly.

Correct breathing, in my opinion, is an essential tool needed to combat the awfulness of M.E. When a human being panics, one is found to be shallow breathing, but this isn't helping at all. It increases the sense of panic and can exacerbate the problem. To regain control of the situation one has to ultimately override one's brain. I have to do this a lot.

I find myself holding my breath when I am concentrating, or when my brain shuts down when I am crashing, or when my brain has decided it is under threat or in a stressful situation, or when I am nervous.

Imagine that?! Your brain being so broken that it forgets one of the very functions that keep it alive.

"Deep breaths" might sound straightforward but when your body is too weak to behave in 'normal' ways, it isn't something that always comes naturally.

Correct breathing is the tool I use to help me get to sleep. It can be calming and relaxing and is something I'd never paid attention to before I was ill.

Mindfulness meditation has helped me and I sometimes do a mindfulness exercise during 'purple time' or when I am particularly poorly. For me, for the most part, it helps to relieve some of the awfulness. I also try to make sure I have at least one breath of fresh air everyday (even if it means sticking my head out of the window) in an attempt to blow the cobwebs away.

M.E takes over so much of my life but I have learnt, and am still learning, to get back some of the control. For the most part, I now have control over my breathing or can get the control back efficiently. I can now prevent the panic attacks (for the most part) that had become a regular occurrence due to ill health. I can now calm my brain down when it feels under threat due to internal or external factors. Yesterday I went into shock when something made me jump, but I was able to coax my brain into realising that everything was alright through the power of correct breathing.

Thursday, 13 December 2012

One big happy family?

"Surely if you're well enough to write a blog you can't be THAT poorly?" I've heard this from more than one of my fellow sufferers; the very people I thought understood this condition.

You have to look at M.E with a much more open mind than that my friends.

Months and months and months of sudoku and solitaire have allowed me to improve my levels of concentration. I didn't over-push myself to achieve this. It was incredibly gentle and gradual. I know that to push too hard will only end in tears. I write each post over the course of a few days because I can only manage a few minutes typing at a time. My hands get sore too and if my vision is particularly bad I can't see my laptop screen properly. Looking at my laptop screen for a few seconds more than I should triggers a crash more often than not. All that I am able to do now is because of the little progress I've made. Can you imagine how poorly I must have been before this improvement?!

As M.E sufferers we lead lives unrecognisable to those in the 'real' world. I'd have never believed a life like this was possible before. I was oblivious to illness. Now I see more suffering than I could ever have imagined. As M.E sufferers we get a raw deal. For the most part medical professionals, the media, policy makers, the public, are against us.

But there can also be hostility within the ranks. We live in fear, for ourselves and for other sufferers. We can be sceptical of 'good' news and can assume any progress that other sufferers make will not last. If a fellow sufferer makes improvement we might question whether they can really have the same illness we have because we are still so poorly. If someone says they are doing x, y and z in the space of a week our first thought is not always how wonderful it is that they are able to, but that they should be careful not to do too much and overdo things and trigger a relapse. If someone mentions that they are going for a walk we might immediately brand them as foolish because exercise and M.E don't mix. It can be very hard to see others progressing while we have come to a standstill. We don't always celebrate each others achievements like we should. We seem to forget that we are all affected so differently. Sometimes we seem to forget that we are all in this together. We should stick together. Of course at the root of all of this is the fact we simply care for each others well being...

Losing the 'fellow-sufferer' friends you've made during the course of your illness is very, very hard. This can happen when one friend starts to recover, while the other does not. It has happened to me on more than one occasion. As poorly people we have become accustomed to losing touch with some of our pre-illness 'friends', but drifting away from the people who are in the same boat as us, and who have kept us going through the horrific days of our illness is really tough. It may be that they needed a clean break from the life and friends they'd had whilst being ill. It may be that they cannot afford to keep in touch because they are using all of their energy and concentration, etc, on leading a more 'normal' life. It may be that they have relapsed and are just too poorly to maintain contact. Who knows?!

Over the course of my illness, or the 'M.E years' as I tend to call them, I have made some incredible friends and acquaintances. I'll not mention names, but I hope they know who they are. Hooray for the Internet! Without it I wouldn't have 'met' any of them. In my first few months of being ill I joined an online forum, Foggy Friends, and it has been an absolute godsend. Most of my new friends have come from that wonderful site, but there is also Facebook and twitter to thank for a handful of them too. I'll admit that, before I was ill, I looked down my nose at people who met other people online and spent their time talking to people they'd never met in real life. I was so wrong. Some of my online friends have become like extended family. They have become household names in our house, despite the fact that I've not heard many of their voices or seen them in the flesh.



In other news, the constant pacing continues this week. The task of wrapping Christmas presents has to be split up into many smaller tasks that are more achievable and realistic. It can be like a military operation! My cards are all finally written but adding the addresses to the envelopes will take me a couple more days (there are only 15 cards to post incase you were wondering.) I will probably wrap one present per day, with a rest day inbetween each present. It might take a while but, if I want to give myself as best a chance as possible of being well enough to enjoy Christmas, I have to be sensible about these things. It might be that I have to get one of my 'slaves' to do it for me, although I've bought them all the same presents this year so that could be difficult!

Wednesday, 12 December 2012

Mourning

As sufferers of a chronic illness we are said to go through the grief cycle continually.

We are mourning the loss of the life we had and the dreams we'd dreamt and the plans we'd made for the future. We are mourning the normal life that should be taken as a given. We are mourning for our friends and family as their lives have been turned upside down along with our own. M.E has taken our lives, but it hasn't killed us. We don't necessarily go through the grief cycle in the same way each time. We might jump from one stage to another, missing out chunks of the cycle in the process.


Shock and Denial 
avoidance
confusion
fear
numbness
blame

Anger
frustration
anxiety
imitation
embarrassment
shame

Depression and Detachment
overwhelmed
lack of energy - just what we need!!!
helplessness
resignation
panic
guilt

Dialogue and Bargaining
reaching out to others
desire to tell one's story
struggle to find meaning for what has happened

Acceptance
exploring options
making a new plan and putting it in place
empowerment
security
self-esteem
meaning
optimism

These are a by-product of our illness, not the cause. In the same way we might develop anxiety or depression because we have been so poorly for so long, it all comes after the illness, not before.


Sometimes it hits me that THIS is my life.

Sunday, 9 December 2012

Feeling Christmassy!

Had a very poorly end to the week so this is my first post for a few days. I foolishly downloaded a game onto my iPad and must have somehow spent too much time playing it. Who knew pretend farming was so exhausting?! That combined with a new air fresher in the house that my brain didn't like very much, and a truly wonderful afternoon with the whole family yesterday has kept me away. Mr Brain is struggling a bit today so I don't imagine I'll be able to keep up with posting daily anymore. My health has to come first you understand.

On a chirpier note Christmas has come early to my bedroom. Yippee! I've decided to have my own tree upstairs so that even on my bed days I can get into the festive spirit and not miss out. It's a fake tree, which aren't as lovely, but I'm not sure I can cope with the smell of a real tree and they're very messy. I'm not sure my brother would have been too happy about having to carry a big, real life tree up two flights of stairs!

My presents were ordered online and delivered by the postman (who likes to laugh at me when I answer the door with Wolverine hair and in my pjs, horrible man!) I will wrap them in stages over the next few weeks (or maybe some kind soul will have to do them for me) and hope my hands and arms are strong enough to write the rest of my cards (legibly) in the next few days. I may have accidentally eaten some of the presents already so they'll need to be reordered. Don't worry they were edible!!!

Not everyone loves Christmas, but I most certainly do. My Christmas jumpers are ready and waiting to be worn with pride. Boxing Day is probably my favourite day of the year. We're a very close family and the grandparents, aunties and uncles and cousins all come to us for Round Two of Christmas dinner and presents. I have my outfit planned already. (That's not necessarily an illness thing. I've always been organised about such important things!)

I'm so pleased my room was decorated when it was because I've had to have a few bed days recently. They don't seem so bad when my room looks very much like Santa's grotto.

Thursday, 6 December 2012

Sad face

I wrote half of my Christmas cards last night (how very wild of me!) and so today my brain is in a strop. When my brain and body can't manage such a 'straightforward' task, well, it can leave you feeling a bit hard done by. For me, it is a big task - to be able to hold a pen, move my hand and arm to write, sit up long enough to write, concentrate on writing neatly and in correct sentences, battle against the out of focus vision and the smell of printed cards...

This week my mum has filled in the Disability Living Allowance (DLA) form and these benefit questionnaires always leave me feeling a little flat and a bit sad. Despite being ill since 2010 we have never applied for DLA until now, partly because the directgov website told us we wouldn't qualify, but they may have been telling porky pies. Imagine that!

If M.E could be cured by filling in questionnaires I'd have made a full recovery by now.

I'm not well enough to tackle the forms myself and so my mum has to spend hours going through them and answering the ridiculous questions. I hate that I can't do it myself and that she has to take the time to do it for me. The multiple choice options don't have the answer that M.E sufferers would need to give.

These forms are soul destroying in my opinion. I really dislike them. We have to focus and think in detail about how we are affected by our illness. I much prefer to stick my head in the sand and plod along with it, rather than having to think about the huge impact being ill has had on my daily life. Each form is just a repetition of the last, with no option to say that there have been no changes in the info last sent off. If you weren't feeling poorly before the form filling in, you certainly will be afterwards. It takes my poorly friends weeks to complete them. The forms have to be completed with a certain amount of time...The system works against the very people it is supposed to be helping.

Today I desperately don't want to be poorly. It's my mums birthday next week and I wanted to make cakes for her and for my cousin's home-coming get together this weekend. I wanted to paint my nails and shave my legs. Alas it is looking like yet another pj day and it is highly likely that, at the age of 24, I am going to need to crawl around the house because my legs are so weak and I feel so poorly. I suppose the most important thing is that I am well enough to make the weekend and so these extras will have to take a back seat. I can't have it all.

But it makes me sad that I can't even manage to do something for the person who has been my rock throughout the course of this awful illness.

Today might be one of those rare days when I just need a good cry!

Still, tomorrow is another day and although I won't be able to make the cakes or paint my nails because I need to save my energy for the weekend reunion with my cousins, I might be able to have a shower and get dressed. What more can I really ask or hope for.





Wednesday, 5 December 2012

The green eyed monster

I am rarely jealous. Like most girls I was never a fan of other girls moving in on my boyfriends, etc, but I don't think I'm an overly jealous person. Less so since being ill anyway. But when your life is on hold, you can't help but notice how other people's lives are continuing. It seems their life is going to plan, while yours most certainly isn't.

Jealousy is a horrible thing. I despise it. I feel like an awful human being for being envious of other people's lives. I should be thankful for my own! There are so many people and families worse off. I have been brought up to count my blessings and be grateful and modest. But, because I am a human being, I don't always manage to not feel sorry for myself. Perhaps jealousy isn't the most accurate word, but you get my gist. It's more the feeling of missing out. These aren't feelings I often get, but they do seem to come as part of the chronic illness package.

This year there was the opportunity of the holiday of a lifetime. Australia! My cousin was living there this year and my sister and other cousin went out this summer to visit her and travel the East Coast. It was never even a possibility that I would make it. I can't manage more than a couple of hours out of the house or travel very far because of my M.E. I didn't even really feel sad that I couldn't go. It was just so unrealistic to even dream about it. In fact I struggle to even daydream about these things now because I can no longer imagine what it is like to be normal.

I had admitted defeat and I was so excited for them. I don't think I've ever been so excited about something I'm not taking part in haha! The girls had a great time and I was extremely impressed by their ability to step up and photograph everything (I've always been unofficial photographer!) My sister and I had a tanning war over the summer while she was away. Despite the St Tropez, I lost!

It was harder to look through their photos than I'd imagined. We've always been close. We were brought up together; us four girls. I admit I felt like I was missing out. I wasn't a part of this adventure and their shared memories of it.

This week my cousin returns home to England and I cannot wait to see her. I haven't seen my other cousin since before her summer holiday to Oz either so the reunion is long overdue! But it hit me that my chance to visit her while she's living in Australia is now over.

I didn't make it.

I feel crushed by this fact. It is highly unlikely that another opportunity will arise when the we are all free, can all afford it, are all healthy enough, to Australia together. They've been there, done that, already now anyway, so it wouldn't be the same. I feel torn between extreme happiness for the three of them, guilt for not making it, and sadness for myself for missing out.

And this opens a whole can of worms...as people carry on and move on with their lives mine is stuck on pause, even if it might only be temporary.

Will I ever be able to move out? Financially I am on the back-foot after a couple of years of not earning, so will I ever be able to afford to move out even if I become well enough to? Relationships is another one, although I'm quite happy on my own. To enter a relationship with someone now, well, it would be a lot for them to take on. I need a carer more than I need a boyfriend! My friends are starting to buy houses, have babies, get married, and while not all of them are, I feel everyone has a head start. Not that it's a race.

Please don't think for a moment that I'm not happy for my family and friends. Their happiness is a part of what keeps me smiling. Please don't think that I feel this way 24/7. I don't. Very, very far from it. I am learning to live in the present; something I had never been able to do before. It's as if I've been able to take a step back and look at my life from a different angle. It's quite lovely!

I don't want people to feel bad for me or feel bad for doing things without me, or for being happy. I want the people I love to be happy. I'm just letting you in so that you see all sides of chronic illness.

Just don't take anything for granted. Trust me.

Tuesday, 4 December 2012

Wellness

I was asked what wellness is to me when I visited the CFS/ME clinic recently. On a scale of M.E to full health and normality where am I hoping to reach?

Unimaginable awfulness____me________________Full health

I answered that being able to work for a few hours a week, cook my own meals, leave home, live independently, that's what I will consider to be 'well'.

In all honesty though, that was my positive answer. If I am really honest with myself the answer is that wellness and healthiness is a return to illness-free life. Why wouldn't it be?! I want to get to the end of the scale; to full health. I long for the day when I will be symptom free. I want to get through a day without the need to rest or give in to my poorly brain and body. I don't want to be anything special, I just want to be normal. To be able to nip out to the supermarket or the petrol station, to make my own meals, wash and iron my own clothes, blow dry my own hair, Hoover my own room, do up my own laces...

I know nothing in life is straightforward and everyone has their cross to bare, but sometimes I wish this wasn't happening to me. I just wish my life wasn't as complicated as it is with this condition.

In reality, I am advised to alter my definition of wellness and healthiness. To alter such goals is a part of fully accepting my chronic illness. Now it should apparently mean getting through each day without having to return to bed. Wellness to an M.E sufferer should apparently be being well enough to see friends, or walk 100 metres, or paint their own nails, or dress themselves...

My goals have changed. My main aim in life is to have a shower and get changed everyday! Hahaha! I wish it was still second nature, something that marks the start of a productive, normal day. Now, it IS my day. I suppose my days are split into two halves: building up to having a shower and getting changed out of my pjs, and then recovering from having a shower and getting changed out of my pjs.

For the most part I am happy with my lot. Worse things have happened to better people and all that. I count my blessings daily. But sometimes it really does suck that wellness can probably no longer mean normality and an illness-free life.

Monday, 3 December 2012

Better than yesterday, worse than tomorrow

There is no cure for our condition. There isn't even any decisive treatment or medication. Recovery stats and rates are far from encouraging. We have to accept that it is likely we will suffer from M.E for the rest of our lives. This could be it for most of us. We could be this poorly forever. I mentioned this to friends the other day and I got an ear-full from some about how it was an awful way to look at life and I was being negative. I don't agree with them there. I was merely stating the facts of life with chronic illness. I wasn't wallowing or feeling sorry for myself, just stating that I have to get my head around the fact that we may never make a full recovery.

At the same time we can't give up hope. People have got better and returned to a normal, or near-normal life. We must keep going because it is our only option and our only chance of survival.

We have to admit defeat but remain hopeful at the same time. That is a very hard thing to achieve.

A non-sufferer friend asked me what the point of me getting out of bed was when I have nothing to do and nothing to get up for. I don't see it like that. I have so much to get up for. I get out of bed everyday because, to me, everyday I get up is a day closer to normality and normalcy. When you are as poorly as we are, to be physically well enough to get out of bed is a huge achievement and something that should not be taken for granted. Like I've said before, our perspective is different now. If I don't get up (on the days when I'm well enough to) I am not retraining my brain properly. Getting better is my job. In the same way that you get up to go to work, I get up to work on my recovery. Having a routine is part of my recovery. Staying in bed, when I am well enough to get up, is not a part of that routine. I don't spend my days working in the conventional sense. I meet my baseline targets. This is the hardest and most challenging job I've ever had. It requires determination, strength and patience that I did not know I had.

I have made a handful of friends through online M.E support groups. I joke that my friends live in my laptop. The wonders of modern technology! I haven't yet met any of them in real life but I count some of them as my closest friends. To have their friendship and support...well it means so much to me. To be in touch with people who are in the same boat as me has been...I can't think of words good enough to describe it! My M.E journey would be much, much bleaker without them. We're all in this together. Whatever lies ahead for each of us, we are never truly alone.

Sunday, 2 December 2012

Practise makes perfect?

Ive already made a similar post to this one so apologies for any repetition. These are just some thoughts that I'm trying to make sense of. Visiting the CFS/ME clinic always leaves me confused and overwhelmed. There is so much to get my head around and a lot of it is contradictory. Some of you may not want to even bother reading this one. I'm not sure it's a very good one.

This is confusing. Life with M.E is! Welcome to our world! Good luck making sense of some of this. If you do manage it, perhaps you can explain it better to me because I'm lost!

It's like we live in a maze and nobody has a map that will get us to the centre the easiest or quickest way. We have to shuffle and stumble along on our own, banging into dead ends more often than not.

It can all be too much. Sometimes I feel like I'm drowning and I have to fight just to keep my head above water. There is so much information to take in and process. I am to listen to my body and rest, but I am to retrain my brain into being a normal brain and to overrest is bad. I am to push my body to build up my strength but I am not supposed to overdo things and trigger a relapse. Sometimes I just need someone to give me the answers and to hold my hand and lead the way. Sadly, with this illness, it doesn't work like that. There are no answers or clear guidelines to follow. We are given the info and it is left to us to find our own answers. It is so hard. I hate it. It is so incredibly confusing. Rest but don't overrest. Build up your strength but don't overdo it. Use your muscles so that they don't waste away but don't use them because to do any kind of exercise seems to trigger an allergic reaction in an M.E sufferer. Everything is contradictory and jumbled and nobody knows the way forward. There is no manual of how to survive this condition. There is no set treatment programme and no consensus on what works and what doesn't. It's a minefield. No wonder I often feel lost and unsure of which way to go next...inner turmoil. I just don't get it. I don't understand. And if I don't understand then how can I possibly expect non-sufferers to get their heads around it?

Have I really improved? Or do I just cope better and manage my new life and symptoms better than I did in the beginning? Have I just got used to it or have I really made progress? I still have the same debilitating symptoms and still feel as poorly as I did in the beginning, but I somehow seem to be able to do more. The brain fog has been improved by medication, as has the restlessness but other than that I just have to ride it all out.

I say that I am retraining my brain to behave like a normal brain but at the same time I say that M.E cannot be cured by repeating something over and over. That's contradictory. To retrain my brain I am doing just that; repeating something so that my brain eventually recognises it as the norm.

With M.E you have to look a little deeper. Nothing with this condition is straight forward, and that includes the recovery. For us, it is simply not a case of pushing and forcing ones body to do things so that, over time, it will become accustomed to it and be okay. Our bodies are screaming at us to slow down and stop and to ignore them completely is ultimately...well, it's not wise! It is not like normal rehab or physio where repetition can lead to results. Instead we coax our bodies back to the norm, very, gently. Our results, if there are any, come unimaginably slower than one would expect.

My clinic has told me to retrain my brain. To do this I have had to stick to a routine and persevere, repeating tasks so that they become second nature and the norm again. Persevering with tasks has made them easier for me. Take having a shower. It is now much easier than it was. But why? Is it because I have spent the last 24 months sticking with this goal so that my brain and body are now used to doing such a task? Or is it because my M.E has improved naturally? Is it because I have simply accustomed myself to my body screaming at me that it's exhausted yet I can carry on with such a task regardless? Do the principles of 'practise makes perfect' apply to us after all? Is the only difference that our goals are distinctively 'easier' and 'simpler' to achieve than those of a healthy human being? Walking 100 metres everyday is too much but starting with the 'basics' like getting changed and showering everyday for months on end became easier for me, so much so that I could increase my targets a tiny bit.

It is confusing I know. I find it all incredibly difficult to get my head around.
Basically, we are incredibly poorly. Incredibly so. You can't treat our condition in the same way you would treat a sprained ankle and you can't subject us to the same recovery programme you might give to someone with a more conventional illness or disease.

M.E really is quite extraordinary and unique.

Saturday, 1 December 2012

Back on track

I am as settled back into my routine as an M.E sufferer can be. I get out of bed, rest. Have something other than cake to eat, shower, rest, get changed, rest, check my emails, drink coffee, rest, chat to Mum, rest, have no caffeine after 2pm, do my stretches...go up to my room at 8pm to start getting my brain ready for bedtime...

So I'm back on the blog. Lucky you!

The other week I was able to spend the evening with friends and meet one of my friend's three month old baby. (Cutest little boy ever by the way!) As we were chatting it got me thinking that my life has become very much like that of a baby.

Now I'm not a baby expert but I picked up on how he has to have a routine, his mummy has to teach him everything, he needs structure, he wakes in the night, he'd had a busy day and so was overstimulated and his usual routine had been upset...that's like me and my brain!

My new-mummy friend spoke about how, after labour, she'd felt like a dead weight; like her limbs belonged to someone else. I obviously cant relate to being in labour and giving birth but I can relate to the dead weight bit. We have that feeling everyday.

She talked about the importance of breathing through labour, to keep calm and focus. Again it's obviously not the same, but 'proper' breathing has been vital for me too. I can now keep (mostly) calm during a crash or through a period of intense pain. I am stronger than I realise perhaps.

It was great for someone to be able to relate on some level. I struggle to explain things face to face and doubt I do a good job of representing the M.E-massive (I tend to say 'I don't know' am awful lot!) but I did my best and didn't worry about how I may not have described things accurately when asked questions on the spot.

The evening with my friends was so unbelievably lovely. The girls walked me out (one in front and one behind as we went down the stairs.) They opened the doors for me because they're too heavy for me to open myself. It's all a bit like a military operation! My sister picked me up and my brother had dropped me off, reminding me to ring anytime I needed a lift even if it was only a few minutes after he'd dropped me off. I am so grateful, thankful and lucky that I have such a good support system that enables me to have little outings like this one; to cling on to some sense of normality.

I had felt that I wouldn't make it. I'd had a careful day and not had a shower until my body felt ready (although it never really feels ready!) but the effort of changing left me zonked. Then the excitement and nerves and adrenaline of seeing my friends kicked in and I left the house feeling exhausted. I had purple time in car...kept myself calm and didn't let myself over think things. (I discard the worry when I can-in this sense it is mind over matter for me, with regard to the anxiety.) I had eaten before I went. The others were having takeaway but I'm crashing after eating more frequently and didn't want that to happen while I was out. (Chinese food is gross anyway!) But I did it! I made it and had a lovely , chilled evening.

For the next few days I had an itchy brain, my legs were twitchy, heavy and like jelly. I kept banging into the walls down the hall. I felt hungover and drunk and 'out of it', my body vibrated in time with my heartbeat, my brain was cloudy, I was dizzy...

but I was so, so happy, even if I was too exhausted to smile. When you have friends and family like mine, who have stuck with you through good health and bad, it's hard to not look on the bright side. I have learnt who my real friends are over the last couple of years and I couldn't be luckier with the ones that have stuck around.