Monday, 26 November 2012


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


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 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 


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


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.


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...

Tuesday, 6 November 2012

Anyone got a spare spoon?

The Spoon Theory has been really useful for explaining things to my friends and family. I have also tried to liken my life with M.E to a near-empty bank account. You have to spend your money very wisely and carefully to make it last. If you dip into your overdraft, the interest is extortionate and so it really should be avoided if possible.

This week I am trying to reserve as many spoons as possible for the weekend because I am seeing two of my best friends. As is the norm for me now, I have had to start getting ready well in advance so that, on the day, I can use most of my spoons chatting and laughing with my friends.

Before the weekend I will have got my coat of the cupboard, bent down to dig my shoes out of the wardrobe, get my clothes out ready, got a drink ready for the journey, maybe have a shower the night before... The day before I see them I will have as relaxed a day as possible, meeting only my baseline targets (shower, fresh air, stretches...) This is all so that I can make the most of my afternoon with the girls.

After I have seen them I will inevitably be short of spoons for a few days, but by keeping up with my baseline targets (the things I manage to do even on my very worst days) I will be avoiding the boom and bust cycle.

It probably all sounds like a lot to take in but give The Spoon Theory a read if you have a spare minute or two.

Monday, 5 November 2012


In the same way that it is impossible to eat a 9 inch pizza in one bite, it is impossible for me to perform tasks in one go. It is now necessary for me to break down my day into more manageable chunks, in the same way that you cut a pizza into slices. 

Take 'getting ready' as an example. The 'Old Anna' would have taken this as one, simple task and carried it out without a second thought. Now things are different. The task of 'getting ready' takes much longer, and not because I am the type of girl to spend hours in the bathroom making myself look my best for a night out. This once straightforward task has now had to be broken down into many, more realistic, tasks. 

I must first tackle the shower. I have a stool to save my legs and as you know I have had my hair cut very short to save my arms from struggling to wash it. I avoid baths because it is hard for me to get in and out of them. My core muscles struggle with keeping myself from slipping under the water completely and I was never really a bath person anyway. Shaving my legs is absolutely exhausting! It was never something I did everyday anyway but now I leave it longer as have to schedule it in on the weeks when I don't need to use my energy on other things. This is all so I am not overdoing it. If I happen to cut myself while shaving, I bleed for a lot longer than I used to for some unknown reason so I have taken to using hair removal cream instead. This, too, is very tiring but I have my stool to sit on and a few minutes of rest while the cream works it magic before needing to be removed. I have to rest while showering. It is a case of shampooing my hair, then having a little break. Then shower gelling. Break. Face washing. Break...

This once easy task is now exhausting. I always need, and have, a rest after a shower before getting changed. I just tend to sit on my bed for a few minutes, with no TV or music. Purple time if you like. I am now 'well' enough to tackle getting dressed all in one go. Before it was underwear on, and rest. Top on, and rest. Trousers on, and rest. (Their were times in the beginning and during my last relapse when I needed help to get dressed. I don't like to think about it.) After dressing I, you guessed it, need another rest. This rest is usually a little longer than the others. On some days having a shower and getting dressed is so exhausting that it writes off the rest of my day. Some days it is not possible to even attempt getting out of my pjs. Not because I am lazy and want to slob around all day, but because I am poorly. 

Next I have to brush my hair. My arms are now exhausted from the shower and getting changed but with my short hair it is now much easier than it once was. I no longer bother with make up or moisturiser or hair products everyday. I save my energy for watching TV, chatting with my family, reading, using my laptop, making myself a cup of coffee... 

On the days when I see my friends I tend to apply make up and so after my rest from changing I might sit in front of the mirror and, at a painstakingly slow pace, paint a mask on to my face, giving my arms a break every now and then. I find it hard to let people see me as I really am and prefer to hide behind the make up. Also it makes me feel good to see traces of the Old Anna again. I rarely wore make up before but now it seems I need it to make me look like my old self. My face is incredibly pale and a different colour from the rest of my body. I look poorly. Before, I was usually quite tanned. When I see my friends I might also try to do something to make my hair look less like Wolverine and dig the straighteners out. My sister helps me with this sometimes (although I have lost count of the times she's accidently clunked me on the head with the hairdryer!) I like to look as near to my old self as possible; to have a few hours of fitting in and pretending that I am no different from everyone else.

In recent months, I have got better at not hiding the true me though. I bought some fake tan to make my skin look less see-through and to look a bit healthier. I rarely use it anymore. I have photos taken where the only thing the same as the Old Anna is my smile, and my ridiculous eyebrows! I have accepted the fact that this is how it has to be for now. I am too tired and poorly to bother hiding behind a mask of beauty products. I am learning to love myself just as I am.

So anyway, what I'm saying is that we have to break everyday tasks down into tiny pieces in order to make them more manageable and achievable. Cooking a meal would be the same. Chop the carrots. Rest. Get the eggs out of the fridge. Rest. Boil the water and rest while it's boiling. Open a can of tuna while sitting down. Rest after you've done it, if you were strong enough to manage it by yourself...What on earth am I thinking of cooking here?! Haha!

I have been lucky. I was able to wipe the slate clean and start over, from scratch, building a new life for myself as a sufferer of a chronic illness. I have no other commitments other than getting better. That is my one and only focus really. For so many, this is just not possible. Some people are still able to work, and can't afford not to. Many are raising families at the same time as feeling incredibly poorly. Many more do not have the help and support of their family and friends like I do. 

Sunday, 4 November 2012


Yesterday the pain is my hands was pretty bad and so I was unable to type properly and upload a post. Today it is a little better.

Everybody has aches and pains at one point or another, but with this condition it is yet another symptom to contend with. Pain-wise I know that I get off lightly compared to many others with M.E. Joint pain is extremely common and I think I feel this mostly in my knees. I also feel it in my ankles, hands, shoulders...

Headaches are common too, as they are for so many people, but I would say I experience more sharp pains in my head than the usual headaches I would get every now and then before I was ill. I was prone to migraines too, but I have experienced very few since having M.E. Every cloud...

My collar bone is an area where I experience the most pain I think. It feels like the muscle is being torn away from the bone. A very unpleasant, and painful, feeling. Luckily for me this does not tend to happen everyday but for other sufferers the pain is ever-present. 

Stomach pain is common for me. I am in the process of altering my diet to see if this can help the problem. (I will tackle diet another day!) The pain is often so severe that I feel the need to double-over, but I am too weak and fatigued to do so most of the time. Instead I have learnt to simply remain calm, control my breathing and try not to panic until the worst is over. 

I have been told that the pain isn't doing my body any harm. My brain is merely confused and getting the wrong signals. In a way I suppose I am not in pain, my brain has just convinced itself that it is. 

My body doesn't seem to cope well with pain. I think it has something to do with adrenaline. My body seems to become overwhelmed by all that is going on and that writes me off. If I have a mouth ulcer or my wisdom teeth are starting to come through, my body turns into zombie mode. I notice it in my legs most of all...they become even weaker than usual and I am zapped of any energy I may have had. 

Friday, 2 November 2012


Noise sensitivity.

I have always been as blind as a bat and now it seems I have supersonic hearing like they do. The door knocker on our front door not only makes me jump, but is incredibly loud. It can take me a while to get over the shock and noise (which leave me unable to move) in order to get up and shuffle to the door.

People's voices can be uncomfortably loud, even when they are speaking at a 'normal' volume level. I feel awful for repeatedly asking my family to speak a bit quieter but the noise actually makes me ill. It unsettles my brain in a way I cannot control. Again, it is not a case of pulling oneself together to get over it. My brain, body and I seem to be three separate things since being ill. I have very little control over them.

I have the volume on our tv on about '8' while it would usually be on a number much higher. My dad often has it on a number in the late twenties. It is overwhelming to have the volume too high. My brain is already struggling to process the moving images on the television. To have too much noise at the same time isn't good and is more than my brain can cope with.

I can no longer multitask. I used to be able to juggle a hundred things at once. My brain now shuts down in protest at being told to deal with more information than it can cope with. If I am watching the television, I usually can't manage to send a text message, or join in a conversation, or use my laptop at the same time. My brain focuses solely on the tv and blocks out everything else.

Since being ill I have been to one house party. Social situations alone can be overwhelming and overstimulating for us sufferers as there is so much to take in and cope with, but this was even harder. It was incredibly loud for a person who finds the rustling of a newspaper too much at times. On the journey home I can feeling very sick and remember shaking at the over exertion of it all.

As well as volume, the tone of a persons voice can bring about difficulties too. If something is said in a confrontational way my brain seems to immediately shut down. I don't know why. These days I am able to avoid a panic attack and stay calm but still I am left speechless. It is as if my brain cannot process things at all.

Listening in itself can be exhausting. It requires more concentration than you would think. Your brain has to focus enough to follow the conversation, process the information, think up the appropriate response and then speak it out loud. When I am 'Zombie Anna' some people like to talk at me to include me in conversation, for example. This is usually the last thing I need. Just carry on around me and I'll rejoin the conversation when my brain has calmed down.

When I am well enough to listen to it, music has been my saviour. It is a wonderful tool. I don't often listen to music these days but I have made progress in the two years of illness and can now cope with it on some days. I have discovered Ludovico Einaudi and he is perfect for the days when I'm not feeling too clever! I have fallen in love with Mumford and Sons all of a sudden and it's very hard to sit still when listening to them. I have recovered enough that I can now sometimes tap my feet in time with music for a couple of seconds. Yay! I cannot wait for the day when I can dance again. I am too slow to move in time with the music and my energy supply won't let me try to boogie for more than a few seconds. I'm sure it would be very entertaining to watch. Probably a bit like Dad-dancing, but worse. One day I hope to throw some serious shapes on the dance floor again. (I was always one of the first up dancing and didn't even care if I was all alone with the dance floor to myself.)

Outside noise is largely out of our control. In the summer many of us have to keep the windows shut despite the sweltering heat because it makes us too ill to hear the noise of children playing, wind chimes, lawn mowers or traffic. As I am writing this there is a man with a leaf blower outside about 50 metres away. My windows are closed but it still seems incredibly loud. It is actually hurting my brain. It makes me clutch my head to try to shield my brain. It's a bit like when the dentist cleans your teeth with that horrible high pitched electric thingy and the noise goes straight through you. That's what it's like. Our tolerance for noise is apparently non existent. Still, everyday life goes on. It can't stop just because it makes me ill.

Thursday, 1 November 2012


Apologies if this is incoherent. My brain has tried its best.

There is an ever increasing list of symptoms and 'happenings' that come with having this condition. I admit I had no idea what was in store for me. After all people with M.E. were just more tired than the rest of us weren't they?

My M.E. is still symptomatic apparently. I still suffer with the same symptoms I had at the beginning in 2010. The list is ridiculous. My original symptom list, that my neurologist asked to see, covered at least 3 sides of A4 paper. Some are byproducts of being ill for so long and not necessarily a symptom of M.E, but all of them are far from lovely. It was a huge shock when I started losing my hair last year. Not in fistfuls but in small clumps. I was told it was just my body's reaction to being so out of sorts for so long. Luckily that has stopped now and I never had any obvious bald spots.

Problems with circulation can be common for loads of people but it wasn't something I'd experienced before. Now I often have two purple (cold) toes and three red ones (boiling hot) on the same foot. My hands and feet often 'go' and I am left with swollen, bright red hands that feel extremely tight, and burning cold feet. This happens most days, usually in the evenings. Feeling as if my blood is running cold or that my veins are full of poison are regular occurrences too.

As a healthy person, my energy levels could be improved by having a bar of chocolate, for example. As a sufferer of M.E. this is no longer the case. My energy levels are not noticeably improved by eating and I steer clear of sugar boots or energy drinks as they make me feel very peculiar. It seems to trigger a release of adrenaline which is my worst nightmare. I am left feeling wired and more zapped of energy than before. Adrenaline seems to attack my body instead of help it. (It's hard to explain sorry, but adrenaline has become the baddy!) Boosting our sugar levels will not give us a burst of energy like it once did when we were healthy. This condition seems to be the exception to the every rule.

My body sometimes reacts to eating meals. I am in the process of dissecting whether it is a certain food type that triggers this. I have cut out gluten and lactose which is helping stop the stomach pain I get, but the 'crashes' after eating are still occurring. My extended family had to witness this for the first time the other day. I never wanted them to have to see me like that as I imagine its very upsetting and unsettling. They usually only see me at my 'best' but as we were all staying together for a few days it couldn't be helped. These crashes are just a normal part of my life now. How to describe a crash? Losing control of my body temperature, becoming temporarily paralysed (yes really), dizzy, faint, nausea, cold sweats, tremors, extremely weak legs, incredibly slurred speech if/when I'm able to speak, involuntary tears, not able to get my words out correctly or form a proper sentence...

M.E has affected my heart too. This is very common. Two years down the line and I can still be scared of the palpitations and seemingly irregular heartbeat. My breathing is involuntarily affected too. Now that I am used to them though, I do not panic like I once would have. I have become very good at staying calm. I seem to take it all in my stride most of the time. These symptoms are the norm for me now.

An itchiness under the skin is another symptom that I would never have associated with an illness where sufferers are 'just tired'. The worst is when it happens under my scalp. This is usually how I can tell if I've overdone it. I get the itchy feeling (like insects crawling around under your skin) all over my body but these days I notice it most on my brain. When this happens it is definitely time for 'purple time!'

Those of you who have seen me over the past couple of years will know that I now walk at snails pace! I am getting speedier as time goes on but it may become time before I'm back to my best. Recently I have started to take Mr Walking Stick with me if I'm out of the house. I can now coordinate myself to use it properly. Hooray! If anything it is stopping strangers from becoming impatient if they happen to be walking behind me. Using it also stops people from assuming I am a young, fit and healthy woman who should be giving up her seat for those who really need it...

Despite all this, and so much more, I'm not unhappy. Not at all! This illness has become my norm and I have been able to accept it and make changes to fit the state of my health. I have the support of my family and my friends, both new and old and I am happy 'in myself' as they say. To sit and ask 'why me?' isn't something I have spent much time doing. It's not in my nature and I'm thankful for that and so much more. Of course having this illness is far from okay, but it is what it is and I have to get on with it.

This blog is merely to help people understand the condition a little bit better. It is soul destroying to suffer with an illness that is so misunderstood by the doctors and medical professionals who should be helping us to get better. Being told it's time to pull oneself together and get better so that ones family can get on with their lives is not something you wish to hear from your GP. If I could make myself better any faster I would have by now. Who on earth would choose to prolong this state of ill health?! If I had any other illness, would we be treated in the same way?