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.

Monday, 26 November 2012

Milestone

I am officially no longer classed as a severe sufferer. I am in recovery.

My appointment with the CFS/ME clinic was this morning and they are incredibly pleased with my progress so far.

It was a positive experience on the whole and so refreshing to be talking to a medical professional who genuinely understands our complex condition.

I am yet to process everything that was said and talked about and some of it has left me confused and a little flat, but on the whole it was wonderful to know that I am doing so well. The difference between me now and me when they first saw me in January 2011 is incredible.

We mostly chatted about how I am taking what I learnt from the programme in 2011 and applying it to my life. I am apparently doing everything correctly, for me. I 'get it' and understand my condition, I have the 'correct' attitude and have physically improved beyond recognition.
I have accepted it...

It's been a happy day for me and my family. We're very realistic about it all (I might be in recovery for ever and make no further improvement, etc) but for today it's lovely to have and enjoy some positive and good news. I am of course still very, very poorly but I am better than I was :-) I don't really want to think about what lies ahead as the road to recovery is ridiculously long and difficult and I might never get to the end of it, but at least now I know I am taking my first steps in the right direction.

I was reminded to have days off from the hard work of rehabilitation and to always be kind to myself. I was reminded that down days are okay. Basically today's session showed me that, despite what the doctors think, I am doing everything I should be to make some kind of recovery. If the rehab programme had/was a test then I would get an A* apparently.

I am so lucky to have the clinic's support. It seems to be the norm to have no clinic to be referred to, so I am the exception. Thank you to everyone close to me for their continued support over the last couple of years. Today's good news is down to my hard work, determination and perseverance, but it's down to each of you too. I could never have come this far without you all.

There may no posts for a few days now but like I said yesterday, I still have so much to cover. This week needs to be a quiet week for me to try to avoid suffering a serious setback after my birthday couple of weeks. But as Arnie says, I'll be back!

Sunday, 25 November 2012

Big, tired, poorly smiles :-)

I made it!

I'm not sure how or why I managed it but I did! After two years of mostly sensibleness and extremely hard work I had one evening off ignoring my brain and body. It was naughty and silly of me I know, but it was also wonderful! I managed a meal out and a cheeky J2O in a busy and noisy pub. I wore my new birthday dress and little heels. How very daring of me! I know I looked poorly and I didn't manage with make-up or contact lenses but you can't have it all can you?!

I officially have the best friends in the world. I am so, so lucky and thankful. They were on alert incase I needed to leave NOW, gave me such lovely, well thought out presents, made sure I had a seat where I wouldn't get too hot or be bumped into by passers by, they cut up my food for me when I need help, walked infront of me when I went down stairs incase I fell...They are just perfect. They all make my M.E journey so much less horrendous.

There may be no blog for a few days while I get myself back on track with the daily grind and rehab. I have a hospital appointment tomorrow with the CFS clinic and the payback from my birthday week will no doubt keep me from writing coherent blog posts!

On a separate note, thank you so much to all of you for reading my blog. The feedback I have received is absolutely overwhelming. The viewing stats are incredible too! I can't believe how well received my blog has been. I only started it to offload a little...My friends quote phrases from my blog when I speak to them and I have received messages from people I don't know thanking me for what I am writing. I shall keep it up. I have so much more to say.





Saturday, 24 November 2012

Naughty me

I haven't felt this dizzy in a very long time. I feel incredibly drunk and my vision is worse than its been for a while. Everything is spinning and my head is lolling about because my neck isn't strong enough to keep it up. I am in intense pain in my left shoulder. But mostly I just feel very, very dizzy and unsteady on my feet. I haven't fallen over...yet haha!

I have had a day of mostly just purple time but still my symptoms are kicking my ***! My busy week is taking its toll despite being careful over the last few days. I've stayed in bed this afternoon in the hope that giving in and letting my brain and body win will alleviate the symptoms. I've not focused on my symptoms or let my mind panic about how poorly am I; that usually just makes everything worse. I have not let myself think about this evening. Instead I have taken each minute and hour as it comes. I have done everything 'right' but still the stupid M.E is winning.

Tonight, though, I am being naughty. I am never naughty. I have always been the sensible one but for one night, and one night only, I am ignoring the screams from my body to stay in bed.

I have had a birthday meal planned for tonight for months and, whether my brain and body like it, we are going! Wish me luck!

Friday, 23 November 2012

Having a go in the real world

There are 168 hours in a week.

On average I spend all 168 hours at home because I am too poorly not to.
(I am also too poorly to have visitors. Having visitors and leaving the house are pretty much the same. In fact I prefer to go out to socialise so that I can leave, to go home, when I need to. If I have visitors and suddenly feel that I need to rest or feel too ill to carry on chatting, I would feel so rude asking my visitors to leave.)

This week was different. It's a one off. It was birthday week. I wanted to have a taste of normal life. This last week I spent 3.5 hours out of the house on Saturday having lunch with a best friend in a quiet restaurant. On Sunday I spent 3.5 hours out of the house having a quiet evening in at another best friend's house. Then on Tuesday I was out of the house for an hour visiting friends. That's 8 hours out of the house out of a total of 168. Only 8 hours of doing more activity than just meeting my baseline targets.
(Of course there is my virtual tea party to take into account too, but I was careful to have purple time and breaks instead of sitting on my laptop all of the time.)

For those wonderful 8 hours I am paying the price. I am in bed. I am not well enough to shower or even brush my own teeth. I can only tolerate the TV in short bursts. Using my laptop is making me ill. My symptoms have all flared up and come back to bite me. I am mostly just sitting here, being.

Do you see now? Do you see how far from the norm our lives are? I wish my doctors were reading this! Remember I am lucky to be able to get out at all. So many of my friends cannot. Many of my friends are too poorly to get out of bed, never mind the house. All I wanted was to forget about my poorly life for a few hours over my birthday. That was too much to ask for.

Some people say that they would love our lifestyle; to not have to work and to 'slob' around all day. To those people, you are more than welcome to come and swap with me or my friends. You seem to have forgotten that we do not live the high life. You seem to have forgotten that we are poorly all of the time...

8 hours out of 168 is too much. This was a one off and I do not regret it one bit.

Thursday, 22 November 2012

Birthday girl!

Another year older and wiser!

Yesterday was my 24th birthday. Happy birthday to me! I was made to feel incredibly special and loved with a huge pile of cards and presents and messages and texts. There was also a lot of cake, and when I say a lot, I mean A LOT! Like a trooper I am slowly working my way through it...

To celebrate I have managed to catch up with friends over the last couple of weekends which has been lovely. On Tuesday I made a short visit to the family I used to nanny for which was wonderful too. This weekend I am seeing more friends. Yes, yes this is overdoing it! But if you can't bend the rules a little on your birthday then when can you? The basics of my M.E rehab are still in place and I am trying to celebrate in an as M.E friendly way as possible...if such a thing exists.

Yesterday I had a party! Not a party in the usual, normal sense, but a virtual party so that even I, and my poorly friends, could attend. I invited my facebook friends to join me in having a cuppa and a slice of cake at some point during the day. All they then had to do was post a picture on the event page of them joining in with the festivities. Over thirty of my friends joined me. I had been at home on my own while everyone was at work and didn't want to open my presents by myself, but having the online party made me feel like I wasn't completely on my lonesome.

It wasn't the poorliest of days but I didn't feel too clever either. The online party allowed me to celebrate in a way that was much more manageable. It may have seemed pathetic or sad for a person to be spending their birthday online but, like other areas of my life, I had to embrace it because M.E does not allow me to always celebrate in more conventional ways. I will admit I didn't feel as if it was my birthday. I didn't do anything particularly different from a usual, normal day. This week my symptoms have left me feeling quite 'out of it' and I felt a little flat when I realised that this is my third birthday where I have been poorly. Still, I am so much better than I was on my 22nd birthday so it can't be all bad. And I wasn't stuck in bed like I am today. What more can a girl really ask for on her birthday? :-) Judging by how horrendous I feel today, it seems even virtual parties and this silly illness shouldn't mix.

I was a very lucky girl (or do I have to say woman now?!) and so many of my family and friends embraced the virtual party with me. I spent the evening with my parents and all of my siblings eating my favourite food and more cake than I probably should have!

So thank you all. You made me feel extremely loved and reminded me how lucky I am to have you. To my family and friends, old and new, healthy, poorly or otherwise, I love you all for going along with my virtual birthday and for the amazing messages, photos, cards and presents. xoxo





Thursday, 15 November 2012

Bubble

I live in a bubble. As M.E sufferers we all do. I no longer fit in to the real world. I can't even pretend that I do anymore. Every area of my life has been affected. I cannot nip to a cafe for a coffee with my friends because it is no longer that straightforward. I need to first of all be well enough to travel and leave the house. There is the issue of parking to think about. Will it be too far for me to walk to? Will there be a seat spare when we get there that isn't too near the door so that I don't get cold, and not next to the radiator so that I don't get too hot and 'crash.' I sound like Sheldon Cooper! If it's busy will it be too overwhelming for me, with the noise and the number of people and the hustle and bustle? If someone accidentally bumps into me will I be able to avoid going in to shock and turning into a zombie? Will the milk in the coffee agree with me or make me ill? Will it be too bright in there so I'll have to wear sunglasses on a rainy, wintery day? Maybe people will think I'm a celebrity going incognito... Will I manage to order my own coffee or confuse the waitress with my slurred speech and silly sentences? Will they think I'm strange? I am a product of this illness.

My symptoms make me feel either drunk or hungover all of the time. This adds to the sense of living in a bubble. My mind is not clear because of the brain fog and things can be distorted. I get a bittersweet feeling after mixing with the real world but I won't shut myself away though. I will face anxieties head on. I use rescue remedy instead of the tablets prescribed to me for anxiety...the tablets mess with your heart beat and M.E. already does that.

I sometimes have to remind myself that to feel poorly and so fatigued all the time is actually not normal. Living in this bubble it is all I know. It is my norm.

The brain fog and living in this bubble have made me less aware of my new life. I am 'in' it and so mostly I'm too poorly to be aware of the changes to my life. I think my illness and condition is harder for those around me than it is for me. The bubble acts as a buffer I suppose, but they see the cold hard truth and the difference in me since being ill. It is always hard to see the ones we love the most when they are ill, but my family has had to endure it everyday for over two years. They live with the knowledge that there is no cure or treatment. I am in limbo. Not dead but not nearly as alive as a human being should be. There is nothing they can do for me to fix me. I hate that this illness has consumed their lives too. I cannot put into words how much I despise that fact. They do not realise that everything they have done so far, and everything they do everyday, has led to the progress and improvement I have already made. Without them I am nothing. They have prevented me from losing my marbles.

I have a friend who texts me nearly everyday. She rarely asks me how I am and that is the way I like it. It's a tricky question to answer afterall. Instead we chat about music we've heard, TV programmes we've watched, boys, the normal, everyday things that I rarely get to talk about anymore because my life has become consumed by M.E. These messages burst the bubble that I live in. They remind me that there is a world out there that I am still a apart of in some small way. Those messages keep me going. I am not forgotten.
Texting is hard for me now and I find it easier to use facebook instead, and, even though I am sometimes not well enough to reply or carry on with the normal conversations, still she texts me. Nearly everyday for over two years. She has her own life and work and family and friends, but still she does not forget about me. She might not realise it but those messages have helped to keep me going. They have made me feel a bit more normal at a time when I know that I am not. They have kept me sane.

This was a hard post to write. I'm not sure I have got across what I trying to get across. It also is the first post I have written that made me cry while I was writing. Perhaps it was thinking about the effect this plague has had on the people I love the most. That has been, without a doubt, the hardest thing to deal with. I cannot put it into words. They get no respite. I am always there and I am always poorly. I always need looking after. At the age of 23 I need a babysitter. I am classed as a vulnerable adult now. Me. Anna Jones. Ex-Deputy Head girl, captain of the sports teams, deputy manager of a children's holiday scheme. I owe everything to my family and close friends. I will never be able to repay them for all that they have done. It breaks my heart that I can't change my situation to make it better for them.

To post or not to post, that is the question.

I have not made this achievement public knowledge until now. Only a handful of friends, and of course my family, know about it.

In May this year I started to try to get back to driving. I passed my test at 17 years old but in October 2010 I had become too ill to drive. It led to me having to leave my beloved job as a nanny. I also lost my independence. I had always loved driving. Absolutely loved it! It has been hard to be 'driven' again but if its good enough for K-Middy, I suppose it's good enough for me!

We live in a small village on a quiet, private road and so for months I would have a go at driving up and down once a day, when I could...getting my arms and legs back into the swing of things...getting my brain used to be alert the whole time I'm in the car. After a while my body adjusted to cope better with this new task and I was able to include 'driving' in my baseline targets* by the end of July, with some ups and downs inbetween.

In August, after months of practising on our quiet road, I reintroduced myself to traffic and would drive to the next village and back until I could manage it everyday without my brain or body throwing a hissy fit.

After a while I could manage to drive, on a real road, and listen to music at the same time!!! This was a big deal people. All I ever wanted was to be able to drive by myself again and listen to my music as I drove along. If this is as good as it gets for me then I can cope with that. It is a dream come true. There were tears of happiness the first I managed it.

My long term goal is to be able to drive myself somewhere and then do something when I reach my destination, before driving myself home again. Whether its collecting my own prescription from the chemist, driving to a postbox to post a letter, or going to see my friends. I managed the last one once last year. My brother was my co pilot and he drove us home afterwards. It was all too much too soon though and World War III broke out between my brain, body and I. This time we're working together at a pace seemingly suitable to all three of us. A very, very slow pace.

I was in two minds as to whether or not to share this post but maybe it shows how complicated our lives are. Nothing is straightforward. Nothing at all.

To share such an achievement in the past has led people to believe that I am better. They then can't seem to understand why I am not able to lead a normal life and do normal things. They are confused when I still have to cancel plans at the last minute or have to turn them down outright because I have other plans made for the week after and can't afford to overdo it. They can't understand why I say I'm still poorly despite being able to do such a normal and 'straightforward' thing such a driving. I know that I wouldn't understand it either, had I not become the sufferer of an invisible illness. Getting back to driving is a huge deal for me and my family, but it is ultimately just a drop in the pond. A tiny step along the long road of recovery.

Remember my illness is ever-present. I never have even a minute of freedom. My vision is constantly blurred and fuzzy and out of focus. My arms and legs feel extremely heavy and weak. I am usually in some kind of pain. I always feel nauseous and so very, very exhausted. There is the feeling of being out-of-sorts/malaise and the cotton wool brain never goes away. However over the last two years I have been extremely lucky to experience some progress and improvement, however slight. The brain fog has improved although it is still there all day every day. With this improvement I am more aware of things and much more alert. Even if I had been physically strong enough to drive, I could not have done until this neurological improvement occurred. It wouldn't have been safe. My limbs are physically stronger than they were before. They don't feel it, but they must be for me to be able to drive. I do not feel any better than I did in that dreadful first few months in 2010, but I am able to manage my condition better and I am able to do more than I could back then.

Some fellow sufferers might think I am being naive and looking at my life through rose-tinted glasses. They fear it will all come crashing down around me after I have exerted myself to reach these goals. It may do. It has before. But it will be what it will be. I am sensible and I'm finding my own way, using the advice given to me by the CFS clinic and the things I have worked out for myself.

For the last month or so I have been able to drive for 10 minutes almost everyday. If I could do a celebratory jig I would! I will probably not extend my little journeys until the new year. It doesn't do to push for improvement too quickly. I have worked extremely hard both physically and mentally to manage and maintain this goal. Blood, sweat and tears, but all the while working with my brain and body for as not to trigger a revolt. It is always, always about balance.


*Baseline targets are the things I aim to do everyday regardless of how poorly I feel, for example: get out of bed, shower, get changed, use the stairs, make my own drinks, and now go for a drive, whilst never pushing my body too hard to achieve them. (Of course on my worst days when I am confined to bed these targets aren't met but that can't be helped.) Baseline targets are used so that I avoid the boom and bust cycle, where one blows all of ones energy on a day out, then is terribly poorly so rests to recover, then blows all of ones energy on another day out, then rests to recover...

Wednesday, 14 November 2012

Embracing it


"Life is not about waiting for the storm to pass, it is about learning to dance in the rain." 


With a condition like ours you either laugh or you cry. I choose to laugh, for the most part. At home we joke about my inability to help around the house. My brother threatens to stick me in the wheelchair and push it to the dishwasher so that I have no excuse not to help load and unload it. We make light of the fact that I am poorly. We joke that I am swinging the lead, that I am a lazy sloth and fooling them all into thinking I am still ill. We laugh at my situation; at the pace I walk (we say there needs to be two lanes down the hall so that people can overtake me) and at my inability to form coherent sentences. I can take a joke. I am so, so thankful that this illness has not taken away my sense of humour. My friends make fun of me too. I love that the people I love most are embracing my new life with me. While they make allowances for me now, they subject me to the same banter and ridicule that we have always thrown at each other. (On my poorlier days I cannot cope with the jokes and Zombie Anna has no idea what is going on, but I don't see my friends when I am that poorly anyway.)

Last year I had a children's tea party for my birthday. Rather than get too upset about not being able to celebrate my birthday in the way I would have liked, I embraced my new restrictions and limitations. In a way I was poking fun at myself. I have become like a child again, reliant on others for almost everything. We played pass the parcel, had a lion piñata, stuck the tail on the donkey, had party bags...the works! I didn't manage to join in with the games myself but I laughed along and loved spending time with my favourite people. This year I think I am able to manage a celebratory meal in a restaurant with a few friends...keeping everything crossed for next weekend. 

I have a 'day bag' that I carry downstairs with me everyday. It has my tablets in it, my activity diary, ear plugs, painkillers, my laptop, mobile phone...I use it so that I don't have to keep making trips up and down the stairs to get things. Once I am downstairs, I am downstairs for the day.

If I go out for the day I might take a blanket, like an elderly person might have to. I have snack pots in my bag and always a bottle of water. Sometimes I take a change of clothes incase I am unable to control my temperature and the cold sweats make my clothing uncomfortable. It doesn't matter. If having to take all of these things with me mean I can get out of the house for a little while then I will do it. I have chosen to embrace the changes that are occurring because of my ill health. Admittedly it isn't always easy but I try my best. Getting in a grump because life isn't quite going as planned is hardly going to fix my situation is it?! If everything went to plan life would be incredibly boring I'm sure...

Tuesday, 13 November 2012

Hit and miss

My body seems to pick and choose when it is going to be intolerant to different foods and smells. Like most things with my M.E, there doesn't seem to be a pattern. Yesterday my brain decided that coffee didn't agree with it. Today, and nearly every other day, it is convinced it does. This happens with lots of things. Jam is another one. Sometimes it leaves me in horrible pain, sometimes it leaves me bloated, sometimes it leaves me fine. I can no longer tolerate alcohol, even if it's just a tiny drop in a sauce.

Some days I cannot cope with the smell of people's perfume. But it is beyond my control isn't it? I can't go around asking people not to wear perfume or certain moisturisers or fake tan. Scented candles can exacerbate my symptoms too. The smell of water sometimes doesn't agree with me. How silly is that?! Oh the joys of M.E.

I am trying, again, to cut out gluten and I do think I feel slightly less 'heavy' and bloated after eating sometimes. It is by no means a cure though.
In recent months I have realised that it seems to be the lactose in dairy products that is causing me to be in intense, sharp pain in my stomach. There aren't too many products that are just lactose free (rather than dairy free) and soya milk and yoghurts are not my favourites! My mum thinks this food intolerance lark couldn't have happened to a worse person! Apparently I'm very fussy... ;-)

I am weighing up whether life is too short not to eat the things you enjoy. When you live a life like ours you have already had to give up so much and now you might have to give up your favourite foods too. I've been told that a gluten free diet can help M.E sufferers. While I am willing to do anything to get better, I am in two-minds as whether to stick at it because...well for one, gluten free food tastes like cardboard! How much of a difference is making to me anyway? It's not that I want instant results. I've accepted that with this condition that will never happen. But to be on a strict diet when there are already few things in life we M.E sufferers can enjoy sometimes seems a bit much.

Monday, 12 November 2012

In our shoes

This post has the potential to be very, very long but I shall try to keep it short.

All of my symptoms are classed as normal now, because I have M.E. But of course they aren't normal. If a 'normal' person felt as poorly as we do for just half a day of their life I can assure you that they would not feel that it was okay and fine. Trust me I've been there. I kept diaries of my symptoms in the beginning. I am learning the hard way how real M.E is.

How would you feel to have at least a 50% decrease in your mobility levels?

How would you feel to be told there isn't anything that can be done for you? Worse still, you may be told that this illness that you've been diagnosed with isn't really a 'proper' illness anyway.

How would you feel, after years of independent living, to have to rely on your family for almost everything?

How would you feel for it to be necessary for you to be spoon fed?

How would you feel to know that your illness is having a detrimental impact on those around you, who you love the most?

How would you feel to be suffer with an illness so, so misunderstood?

How would you feel to be told that it's time you got a grip and pulled yourself out of this rut so that your family can get on with their lives...by the very doctors you rely on to help make you better?

How do you think it feels to feel that your life has been taken from you, but you are still alive?

Invisible illnesses are tricky things. I can understand why there are misconceptions about this illness. There is a lack of physical evidence. My blood tests come back clear. There are no physical signs of my pain. My glands are usually swollen, my speech is slower and slurred, I walk at snails pace, but other than that I'm not sure there are any physical signs that I'm unwell, except that I look like death 99.9% of the time haha!

Saturday, 10 November 2012

Bed days

Involuntary muscle twitches. Check. Dizziness. Check. Nausea. Check. Fatigue. Check. Feeling faint. Check. Painful and paralysed legs. Check. Brain fog. Check. Headache. Check. Abdominal pain. Check...

Today is looking like a bed day. It can't be helped. It's probably the best place for me. On bed days my ever-present symptoms are worse than they usually are and I feel too poorly to be anywhere other than here. At least I'm warm and cosy hey?! And I am able to use my laptop in short stints. Every cloud...


Wales are playing Argentina today but I'm not able to watch. I don't often manage to watch sport anymore. The combination of noise, moving pictures of the TV screen and adrenaline is too much for me to cope with apparently. I had to leave the room and take myself back to bed. Family members pop up to check on me every now and then but I mostly need to be alone. On bed days I just have to go with it; to lie here and wait until it's nighttime and I can, hopefully, go to sleep. When I'm asleep it all goes away. I don't tend to get bored. I feel too poorly. Usually I don't do anything other than lie here. It is lovely when I'm well enough to use my laptop like I am now. 


Tomorrow I am seeing a couple of friends from university. Fingers crossed. I'm hoping that if I'm nice to my brain and body today, they will be on their best behaviour tomorrow...


I confess to still, after two years, getting a bit scared on days like today. It isn't nice to feel so poorly. You'd think I was used to it by now. I would love just one day off from all of this. Funnily enough I take all of this as a good sign that I feel this way. In the beginning, and only 12 months ago, I was too poorly to really notice how ill I was. Now, with the brain fog much improved, I am more aware of my situation. 


I hope to manage to watch a DVD later. Something simple like Toy Story. Staring at the same four walls just isn't as much fun as watching Woody and Buzz. I think a shower is off the cards today. It just isn't wise to push my body on days like this. 


On a more cheery note, this week marks an anniversary for me! It is one year since I moved back upstairs to my bedroom after having to sleep in the dining room when I was too poorly to get upstairs. Three cheers for me! I hope I never have to live down there again but I know it is out of my hands. What will be, will be.


I am one of the lucky ones. Not everyday is a bed day for me anymore.


"Just because today is a terrible day doesn't mean tomorrow won't be the best day of your life...You just have to get there." Unknown 

M.E?

Sometimes I do worry that everything gets classed as 'ME'.

I am prone to having swollen glands and tonsillitus-type symptoms. If I manage to build up enough energy to get to the doctors there is never any sign of anything wrong. It's 'just' the M.E.

I was told to go back to my GP when any new symptoms arise. I might as well set up camp in the reception area of the surgery...

My poor body is so out of sorts. You see the adverts on the tele about what signs to look out for when people are having a stroke...we have all of those symptoms at one time or another. I saw a campaign recently about being aware of brain tumours. Again those symptoms are the same as ours, although for some of us they fluctuate. I confess to googling my symptoms in the very beginning. A description of MS sounded incredibly familiar. I have read of M.E sufferers likening their life with this illness to how they felt during chemotherapy for cancer. I read that one sufferer felt even worse with M.E than they had going through their treatment for cancer. I have read that some doctors have likened the suffering that M.E patients go through as very much like that of AIDs sufferers in the last few months of their life. It is not a competition; just something to think about.

Baring this in mind, I have friends who have graduated as doctors. Not one of them learnt about M.E during their five years at university. I have a friend who is training to be a mental health nurse. He has covered M.E more than once. M.E is not a mental health condition. It is supposed to be 2012...I am lost for words.

How is it that our condition is still so, so misunderstand and brushed aside?

Friday, 9 November 2012

The serious stuff

Baring in mind what I have posted about emotion, I have to be careful here. I have been writing this post in stages over the last few days so that I can have a break from it before I get my knickers in too much of a twist. I am angry, but most of all, I am scared. For myself and for my friends and for the people like us. I do not pretend to be an expert on this topic. Far from it. These are just my thoughts...

Me? On benefits? I never in a million years saw it coming. It is soul destroying to be unable to provide for yourself, and your family. Do you think we want this? To be so ill we cannot earn a living and live a normal life? Do you think I racked up twenty-odd thousand pounds in student debt to get a degree and then not be able to use it? My savings, the money that was saved over the course of my whole life, are gone, spent on surviving and on the bare necessities. My money now goes on my prescriptions and my food and toiletries, things like that. Not holidays and a flash lifestyle like the media makes out.

If you have ever had the pleasure of tackling an ESA form then you will know how hard they are. I am unable to fill in the dreaded forms myself. There is a deadline within which the form has to be returned. My arms and hands are too weak to write legibly, the brain fog makes it near impossible to work out what each question is asking, my concentration difficulties mean composing a coherent answer is extremely hard. As M.E sufferers we cannot be pigeon holed and do not fit into either the Yes or No box. The system is not suited to us. A computer decides whether we are fit for work or not. Of course there has to be a limit and a cut off point, but the system, in my opinion, is wrong.

This passage springs to mind when I think about the benefit cuts...

"First they came for the socialists, and I didn't speak out because I wasn't a socialist.
Then they came for the trade unionists,
and I didn't speak out because I wasn't a trade unionist.
Then they came for the Jews,
and I didn't speak out because I wasn't a Jew.
Then they came for me,
and there was no one left to speak for me." Martin Niemöller

Our grandchildren will ask us how people felt about it at the time, in the same way that I ask my grandparents about the miners strike and their experience of the Second World War. "How could people let it happen?" they might say. As a history student I know that such a topic will be studied at university in years to come. The Cameron Cuts. In our society we seem to only look after number 1. But what if you're not well enough to? There are some incredibly poorly people putting their health at risk to protest and campaign against the current benefit cuts. I suggest a read of Diary of a Benefit Scrounger

Where will we live? How will we eat? Are they not basic human rights?! The rights of criminals and terrorists are being honoured but what about us? What if it was happening to you? I lost my health within 3 weeks. Good health is not a given. I do not want to have to rely on the state to survive. I would love to work and to earn my own living. I feel I am just a number. A number that needs to be crossed off so the government can say it has met some target. What do they think will happen? That by taking away our source of survival we will automatically either be fixed or disappear.

If they could see us now, all using our laptops, we would probably be deemed as fit to work in an office or call centre... What they don't see is the hundreds of breaks we have to take throughout the day just to be well enough to use our computers for 10 minutes at a time. If they saw this blog they would probably assume I am clearly capable of working with a computer. They do not see that I write each post over the course of a few days. I do not sit here and bang out each post on the day it is posted. It actually takes me weeks to string the paragraphs together because that is the rate my brain will work at without throwing a wobbler. By posting yesterday I was left unable to do anything else, including having a shower.

They do not take into consideration the noise and 'bright' lights of an office. I understand that the country is in a mess and that cuts need to be made. But how will we, the weakest in society, survive? I have friends who, when their benefits are cut will be homeless because they have no family to look after them. Homeless. HOMELESS. I worry how I will be able to afford to pay for my prescriptions. If the government wants us to be fit and healthy enough to be back at work, taking away that money that pays for our medication is surely shooting themselves in the foot. I am so lucky and fortunate that my family will support me through thick and thin, but at the age of nearly 24 I will feel that I am even more of a burden when I cannot contribute financially.

I will stop now before I get too wound up.

I am scared.

Thursday, 8 November 2012

Emotional=wreck

I can't afford to cry or get upset. If/when I do the emotion completely writes me off. It is beyond my control. A family member was recently in hospital and, although I didn't cry, the emotion and worry of it all knocked me for six for days.

I have always liked to know the end of films before I watch them. I'm not a massive fan of surprises. This condition has exacerbated my need to avoid surprises. If something makes me jump, the shock can last for ages and affects me physically.
One of my best friends lost a family member last year very suddenly. It broke my heart that I could not make it to the funeral to support her and my friends, all because the emotion had written me off. How dare my brain act so selfishly in my friend's hour of need?! I was angry that this condition meant I could not even manage to make it in my wheelchair. The emotion had made me too poorly. I think it is the adrenaline that does it. It acts as poison in my veins rendering me useless.

This is what I find the hardest about M.E. It not only affects my life, but it has an impact on the people I love most in this world. It can do what it wants to me, but it is going too far when those around me are affected. It has got to the point where people have to keep me from things so that my health does not deteriorate. I know it isn't my fault that I can't cope-my brain is broken-but I wish things were different. I wish I was normal. I used to be quite good in a crisis.

Positive emotion is not as destructive but it works in the same way. I have always been one of those annoying people who gets excited over the smallest thing and about things way too early. I got very, very excited about a new pair of shoes a while ago. (My shoes always split people's opinion!) Although I was sat down and had merely put the shoes on, the excitement zapped me of energy within a few minutes. Goodness knows what I'll be like come Christmas Day!!!

Wednesday, 7 November 2012

Wild nights in

Today is a poorlier day than yesterday. I keep an activity diary but I cant see that I did anything more than usual in the last few days. Ho hum. Life with M.E is full of surprises! This afternoon I've been struggling to sit up. Sitting up...sometimes I can't manage it because my core muscles are too weak but usually it is because I feel too dizzy or faint. Even if I put my legs up on a foot stool or chair, my brain protests because it refuses to compromise. It seems to be happiest when my body is as near to horizontal as it can be without feeling like the room is spinning. It wants me to be reclined in bed. I sound like such a lady of leisure. Maybe I should employ someone to peel me grapes and fan me to complete the look!

So here I am, meeting it's demands and lying in bed. My heart is playing up too and my whole body shakes and moves to the rhythm of my heartbeat. My head wobbles around like a nodding dog. This is different from the tremors I get. It's quite scary. "At least your heart is still beating" was what my GP said...well yes there is that! This all happens quite a lot. I caught it on video once. There happened to be water bottle at the bottom of my bed on the opposite side to me and, although I wasn't touching it, the water was moving in time with my heart. I'm in a bit of pain this evening too but I'm hoping it'll leave me alone soon.

I can cope with watching the tele this evening :-) Yay me! The TV in my room is maybe only a few metres away from where I am in bed but I will have to build up to making it over to put a DVD on. Let's hope I don't need the loo anytime soon! Maybe I'll stick with the TV channels if I can find something decent to watch. The Big Bang Theory is a favourite of mine but I don't think I'll ever love anything as much as I love Friends. I hate reality TV usually but some reason I love Keeping Up With The Kardashians. What has happened to me?!

Boxsets have been a godsend if you discount the constant need to get up and change the disc over. It's a good way to ensure I don't over-rest though. That isn't good for us either. Soon it'll be time to dig out the old faithfuls like Home Alone and Love Actually! I haven't been able to make it to the cinema since I've been ill but I like getting round to watching all the latest releases on DVD. Comedy has always been my favourite. Scary films are a massive no no! Even Harry Potter is too scary for me. The Woman in Black has scarred me for life!

My arms a bit too weak to hold my book this evening so I'll save that for another day. Reading has become a luxury now because of my difficulty concentrating but it's always lovely when I manage a chapter or two. Simple pleasures.

Identity

Who am I now? If I had to define myself now I would really struggle. Of course I am a daughter, a sister, a friend, a cousin and I am so lucky and happy to be those things. But I don't know what else I am. The things that defined me as a person are gone. My job for example. I miss my job. It was the one thing I felt I was good at. I thought I would have a connection with the people I worked with for the rest of my life. I know that I could not have stayed working there forever. I was in the process of looking for a 'proper' job after graduation, but I would have stayed in their lives forever. This illness made it come to an end in a much too abrupt way and before I was ready. I miss them. It was the hardest part of being ill, giving up that job. I think it broke my heart. On my last day I sobbed embarrassingly as if it was the end of the world. It was. It was the end of my world as I knew it.

I had a summer job too. I loved it just as much. I had worked there in some capacity since the age of 13. I loved the summers. The people, the socialising, the responsibility, the fun, the laughs. I do not hear from any of my former colleagues now. I thought they were my friends. I admit I didn't make the effort either. I was either too poorly to get in touch or it hurt too much to do so.

I'm finding it hard to reflect on my old life. I can't remember what I was like. I was hardworking, always on the go. I was active. I loved to go out dancing. I was a student, then a graduate. I was independent. All I know is that I feel I have changed almost completely, on the inside at least. I used to be defined by the things that I did. Now I'm not able to do much, in comparison.

Am I now merely an M.E. sufferer? Just one of the very many? Somebody people think of as a benefit scrounger and work shirker? Somebody that the government tries to ignore and sweep under the carpet? An ill person whose illness is still so misunderstood and debated? Whether I like to admit it or not, my illness defines me now because it is all-consuming. When you no longer have good health, your whole life is affected. Being poorly has altered my character and personality. It has changed who my friends are and who I am.

Now when I let/make myself think about it, I feel redundant. Useless. I have nothing to offer and nothing to give. I am too poorly to offer my friends a shoulder to cry on even. I have had to become selfish and it is a trait both foreign and disgusting to me. I hate that people's days and lives have to centre around me. Anna needs to be fed. Anna's clothes need to be washed. Anna's bed needs to be changed. Anna isn't up to holding a conversation today. My mum has to fill in my medical forms and benefit forms because I am too poorly to do it. I can do next to nothing for myself, although I am now starting to manage a few things. I rely completely on others. I feel like an incredibly boring person now. My brain is too slow to cope with the everyday laughs and banter that I was a part of before. I have become 'simple'. I have lost my purpose.

I am able to see the positives too. I have not lost my sense of humour. I am still a tough cookie, perhaps even more so than before. I am proud of my ability to pick myself back up after every setback or relapse and keep going everyday. It isn't even something I have to consciously think about. I just do it. Now I am carefree for the most part. I have mellowed. I hope, if I recover, I am able to remain carefree. It is a trait I like. I worried too much before about things that were not worth even thinking about. I still like things to be fair and just and have come to believe that regrets are a complete waste of time and energy. I have developed a thicker skin which is needed when dealing with the misunderstanding and stigma of this illness.

Today is a thoughtful day and my life feels very much up in the air. This is not a sad post. I am merely being matter of fact.

I am still finding my feet in the uncertain world of chronic illness...