Thursday, 27 June 2013

Anyone want to swap?

In life there must be times when people think "I really don't want to be a lawyer [or whatever] anymore." They really fancy a change. A career change or maybe a new job in the same field. 
Well, I fancy a change. I have decided, after (not) much deliberation that I do not want to be an M.E. sufferer anymore. 

It's just never-ending. 

For the past 1030 days I have woken up poorly. Someone was moaning to me recently about how ill they felt being full of cold for a few days. I'm sure it was horrendous but I found it hard to sympathise. I couldn't imagine that not being the norm. To them it was such a foreign feeling and they moped around. I don't mean to imply that my illness is worse than theirs. I'm not like that. Everyone has their cross to bear. But what I mean is that while I made the right sympathetic noises and wished them a speedy recovery and listened to how awful their last couple of days had been while they sat at work full of cold, I didn't FEEL the things I was saying. I can no longer relate to it. That's sad isn't it? That I can't remember what healthiness feels like so I can't imagine how awful it must be to lose it for a few days... 

Life with this wretched illness is like running on a treadmill that's going too fast and you just can't keep up....with anything! It just needs to stop. I've learnt that no matter how 'well' I might be doing it is always only a matter of time before things come crashing down again. Call me pessimistic if you like (you'd be wrong) but that's the nature of my illness and the pattern that my illness follows. By now you will know that, day-to-day I really am Little Miss Sensible. I'm already doing everything in my power to recover but being an M.E. sufferer is a full-time and long-term commitment; a commitment I didn't sign up for. 

What kind of life is it, for your whole day to centre around whether or not you'll manage to have a shower. And then when/if you do manage it you suffer from the exertion of such a straightforward every day task. And remember I'm one of the 'lucky' ones. I hate to say it (because there are people in much worse positions than mine and there is no ideal illness is there?!) but I actually wish I had something treatable. Anything. We just get such a raw deal from the symptoms, the medical professionals, the media, society...

So would anyone like to swap? 

Saturday, 22 June 2013

The Adventures of Anna Jones - Mary's Birthday

(This is for all those lovely followers and friends who've asked how I got on with last weekend's adventure. It's a much longer post than I'd usually make so sorry to those who struggle with reading.)

So Saturday night? It was amazing! I didn't want to go home. I wanted to stay out in the 'big wide world' forever!
I'd been excited and preparing for the Big Night long before the event actually arrived. Admittedly the excitement and nerves and adrenaline had worn me out by the time Saturday arrived, so I tried to relax in my room with one of my many simpleton-friendly DVDs. I was nervous. For a mostly-housebound person it's huge; to be going out of the house and on a Saturday night no less. 

Usually when I see my friends I don't bother with make-up. It requires effort and energy that I just don't have and I can hide behind my glasses anyway. 

I'd had my heart set on wearing my contact lenses though and that comes hand-in-hand with make-up for me...so I painted on the war paint.  (And I really mean painted! I was caked in the stuff by the time I'd hidden the paleness and bags under my eyes and the random blotchiness.) 
If that wasn't ambitious enough I fished out one of my few remaining pairs of heels. Why not kill me legs off as well as everything else?! Contacts AND heels. I'm crazy wild aren't I?! 

Celebrating Mary's birthday
My outfit was simple and as comfortable as it could be; jeans, long baggy vest top (incase I suddenly became too hot) and cardigan. I didn't faff about with jewellery too much because I was aware I'd have to take it all back off again when I got home. 

My friends picked me up, we parked in the nearest available disabled space (one of my new found uses is having a Blue Badge, apparently) and we walked to the short walk to the restaurant/bar. 

I ended up sitting between my friends on a super comfy chair. It was noisy in the restaurant but everyone thought so, so it wasn't just an M.E thing. I chose carefully from the menu, not wanting to trigger stomach pain or digestive problems (sorry!) I treated myself and drank Coke. How naughty to be having caffeine after 4pm but it was a special occassion. (I can no longer tolerate alcohol, not even the smell of it.)

After the meal we moved to the bar area for drinks. Again we found seats and I embarked on the next part of my Saturday Night Adventure. I went to get served at the bar. Dun dun dun! 



I nearly bottled it twice while I waiting to be served. It was busy and crowded and noisy and the wait felt quite long for someone who doesn't manage to stand for more than a minute or two. I'm no longer confident with money so that little voice in my head had to really work hard at coaching myself into staying calm. What's the worst that could happen anyway? I could have just handed my purse to the barman and flashed my medical ID bracelet if I'd had to. (It's like being a member of some exclusive club what with my bracelet and my Blue Badge.) 

I probably looked close to tears by the time I mumbled my order but I did it! And I carried the two drinks back to our table. I think it has been two and half years since I last ordered a drink at a busy bar on a busy evening. What an achievement!

As for Mixing with the Normals, everyone was lovely and the topic of M.E never came up and I didn't have to answer any questions about jobs. I could join in with some of the conversation because it was about university and then I listened to how everyone else was getting on in the their work or in their relationships or whatever else they were up to. Just to out of the house for one of my best friend's birthdays was enough. The rest was all a bonus. I don't know if anyone knew I was ill or whether they'd been told before that "it's Anna who's the ill one". I wouldn't have been embarrassed by it and I don't mind whether they knew or not. For that evening I wasn't the illness. I was just me and it was wonderful. 

Contacts lenses AND heels (plus my super happy smiley face!)


Sunday was a pj day, Monday was a bed day and the rest, while I managed to get out of bed and dressed, is a bit of a blur. I feel a bit away-with-the-fairies, not helped by having to endure my first cervical screening this week. Don't worry I won't go into any more detail! 

But none of this payback will take away from Saturday. In years to come, when I look back at The M.E. Years, it is Saturday night I will think of, not the aftermath, which will no doubt become blurred in with the rest of the poorliness. 

Just to be invited is a big deal if I'm honest. So many of my M.E friends no longer hear from those who they considered to be close friends. Over time people can drift apart, naturally, but invisible chronic illness can make things even harder. Alas I have this small group of friends who still, after two and half years of cancelling plans, being unable to travel to housewarming parties or birthday meals, include me and accept my new limitations. They may not understand my illness but that doesn't necessarily matter because, to them, I am so much more than just 'the poorly one'. 

Proof that I survived my adventures. Feeling a little worse for wear but still smiling. See!


Wednesday, 19 June 2013

Supplements & science

You might hear us talk about the lack of help and understanding we get from the majority of doctors. There is a handful of doctors who actively work, on our behalf, to get to the bottom of this complex illness. 

In April I was handed Dr Myhill's notes on Mitochondrial failure and could have wept at how refreshing it was to read that someone was taking M.E seriously instead of brushing it under the carpet as a mental or psychological illness. (Not that there's anything wrong with them.)

Link to the published papers for anyone interested - CFS - The Central Cause: Mitochondrial Failure

The first week on the new supplements was really not good. I can't begin to explain the washed out, sluggish feelish. Everything was a battle; to sit up, to move my arms to get food from my plate into my mouth, to chew and swallow... Wowzers! 

All of these supplements support the reduction of fatigue but it felt like the opposite was happening. Perhaps my body has forgotten how to function properly and so couldn't process the supplements as it should have been able to.

The fatigue was so bad that I felt constantly nauseous. Now don't get me wrong, I feel horrendous every day but THIS was on another level. At times I felt a bit grumpy and irritable too (which we saw as a good sign; there's still some of the old feisty Anna in there somewhere!)



To cut a long story short I came off the supplements. I gave it more than four long weeks, well over £200 and a bucket full of effort and determination but it became clear that it was the supplements that were exacerbating the fatigue, visual disturbances, malaise, everything! 

At some point I may reintroduce some of the supplements to try to determine whether it was just one of them causing the problems. It highlights how what may work for one sufferer may not work for another. We are all affected by this plague in different ways with no definitive treatment or road to recovery. 

(I did not buy Dr Myhill's test kit or the package of supplements from her website. It was much cheaper, but still very expensive, to buy the supplements separately from Holland and Barrett, Healthspan or other online stores.

D-ribose - I did notice an immediate improvement in palpitations and irregular heartbeat
Co-enzyme Q10
Acetyl-l-carnitine
NAD (B3)
Magnesium
B12 (injections or orally) 

A GP friend, who has an understanding of suchlike chronic illnesses, handed me the notes and medical advice. I am so grateful, even if the supplements didn't work out so well.) 



Thursday, 13 June 2013

Nothing to prove

This weekend I am meeting people I've never met before. I'm so excited to be going out to a restaurant with a couple of my best friends but I'm nervous too. I don't have much to talk about. Every topic can be brought back to M.E. I won't be able to get up and dance, I can't drink alcohol and I probably wont be able to stay out longer than a couple of hours. This is when having M.E becomes even trickier for me. I don't want them to think I'm dull and boring. They will meet this young woman, in nice clothes and wearing make up, and they will have no idea about the days (yes days) of preparation it has taken for me to get to that restaurant for 8:15pm on Saturday night. Why should they care anyway? 

I've had to mentally gear myself up for the noise of a busy restaurant on a Saturday night, for the lights and smells and the food that may or may not agree with me on the night. 

I plan to wear make up and my pre-M.E clothes and, fingers crossed, even a pair of heels. I hope to look 'like myself' and I am so excited. But I have already started to worry these people will think I'm not really ill. Would it be better to go as I am, one of The Great Unwashed, and leave everyone with no shadow of a doubt that I'm "the ill one"? That's a very brave thing to do; to expose that vulnerable version of yourself. I've done it before many times but this time I want to go as 'me'. 

Going as 'me' means more suffering. I will use energy applying make up and wearing clothes that, while they aren't uncomfortable, aren't the comfiest. If I wear heels my poor legs will absolutely hate me when I get into bed that night...and for the days afterwards. 

This topic opens up a can of worms. 

I don't want to look ill, I don't want to be ill, but I want people to believe me when I say I am ill. I want to be free to dress up and wear make up and look my best, if I'm well enough to, without having to think about whether it will leave people confused when I say I've been incredibly, physically poorly for over two years. 

But I need to learn and remind myself that I have nothing to prove to these people. This desire to educate people about our truth with M.E mustn't get out of hand. Sometimes it consumes me but I must remember that people cannot and will not truly understand the severity of M.E unless they suffer first hand. I cannot change the way other people think no matter how often I post a picture of me in my pyjamas or the bags under my eyes or my unkempt hair. I know I'm ill, I know the truth so what does it matter what others think.

I have nothing to prove. 

But at the same time we, as M.E sufferers, have everything to prove. We have to prove and persuade our doctors that we are ill. We have to prove to the DWP that we are as severely affected as we say we are. We have to prove to our employers that we really are unable to keep working. We have to prove to our friends that we're not cancelling plans because we can't be bothered but because we are too ill to keep them. We have to prove to society that M.E is a horrendous, serious, chronic illness. We have to prove to everyone that it isn't a case of pulling ourselves together. 

My blog, in part, is my way of proving how real M.E is.

When people ask if I fancy going out for a walk it makes me feel like it's all falling on deaf ears. Telling me "Well we'll see how you feel on the day"...it's so lovely that you are hopeful and have faith in me and encourage me, but please, believe me when I say I can't do it. It's not me being pessimistic. It's not me giving up. It's just my reality.  

I cannot walk very far (definitely not 100 metres) and if I could, on those really good days, I would suffer so badly for it. Day to day I am able to walk around the house; usually up the stairs once or twice and along the hall between the kitchen and living room. On good days I also walk the ten metres down to the bottom of the garden and back as a part of my rehab. That's it I'm afraid folks but that is incredible for me as an M.E sufferer! 

Believe me. Please. Just believe me. 

I do have something to prove. I have everything to prove because the reality of M.E is unfathomable and seems so far fetched. I almost feel it is my duty as an M.E sufferer to educate people about our reality. At the same time I need to let go of this need to share and show the truth all of the time. There needs to be a balance. I'm still learning. 

Sunday, 9 June 2013

Mixing with the 'Normals'

Nearly everyone knows I'm ill. It's as if I'm a celebrity or something. All of my friends, ex-colleagues, acquaintances, neighbours, friends of my siblings, friends of my parents... nearly everyone knows I'm somewhat out of action. Even most of my friend's friends know of my 'situation' but there is still the lesser-spotted stranger who is none the wiser. 

On the rare occasion that I come across someone who doesn't know of my new found status as the local VIP I become a bit flummoxed. Do they not know who I am?! Where have they been?! I'm practically famous for goodness sake! 

Meeting new people for the first time is hard. It's hard to stomach that this is the person they meet; this version of Anna. (Yes I know you all think I'm still the same but I don't feel it.) I wish they were meeting the old Anna but I'm learning to love and accept this new version of myself. It is also hard seeing people for the first time in years. I don't love that they see me looking so rough. Everyone wants their old school friends to think how far they've come since they last saw each other! That really can't be said about me and my life can it?! "Christ she's let herself go!" would be the first thing that came into my head if I were to meet myself for the first time since leaving school. Of course appearance is a big part of this but I try my hardest to rise above it and keep things in perspective. Afterall no one looks their best when they feel like utter...poo. 

On the rare occasion when I'm in a social situation with someone I've just met, the small talk can be tricky. When faced with the "What do you do for a living?" type of question I am always at a loss as to how to answer. Answering that I'm currently in "rehab" will no doubt leave people wondering what on earth it is that I'm in rehab for. They might casually try to check my arms for track marks or leave wondering whether I'd give Lindsay Lohan a run for her money on a wild night out.  

Alternatively I could answer that I am an unofficial TV critic or pyjama tester for some well known store. Alas I usually just turn into a bumbling fool who has no idea whether to be brutally honest about what I do day-to-day or just skate over the topic without going into any deep and profound response about embarking on a journey to find the true meaning of life. In the past I have simply answered that I'm currently out of work and then promptly change the topic of conversation. 

While I may not be all that confident in the presence of people who don't know of my exciting secret life as a mostly-housebound simpleton, I'm not overly shy either. I make jokes about having had an extremely productive day in which I managed to shower AND boil myself an egg. Goodness me, how wild and daring! 

Jokes aside, it does hurt deep down. What makes me sad is that I feel so far removed from these 'normals'. Every (and I mean EVERY) aspect of my life has been affected by chronic illness, from the films I watch, to the clothes I wear, to the amount of times I need to go to the toilet in the space of an hour. I join in with conversations and laugh along but I always leave feeling like I was out of my comfort zone. Only once have I broken down in floods of tears when catching up with people and hearing about what they'd been up to; searching for jobs, interviews, reunions, shopping trips...I had absolutely no news other than that I'd been confined to bed for the last few days. Who wants to hear that?! People rarely know how to respond. 

A couple of examples: 

The window cleaner knocked on the door recently and I was speedy enough to answer the door before she came to the conclusion that there was nobody home. She chatted away to me (which can be exhausting in itself) and then noticed Mr Walking Stick. "Oh dear. Been in the wars? Sports injury?" Umm, not exactly. (Is it such a foreign concept that a young woman might need a mobility aid? It seems so normal in My World now...) My reply was something along the lines of "I wish!" and I muttered something about chronic illness. Her response made my day. Instead of the uncomfortable attempt to avoid eye contact and change the subject she said how sorry she was to hear that. She wished me all the best. Her kindness and friendliness stayed with me for the rest of the day. 

At the beginning of this year I met some friends of a friend. I don't think they knew of my celebrity status as the local cripple. Towards the end of the evening I started to 'crash'. I had to have help holding my glass of water, be helped into my shoes and coat and I was rapidly losing the ability to speak let alone join in with the banter and conversation. I left quickly and forgot to say goodbye to everyone. I was just so out-of-it, feeling incredibly drunk because of the extreme exhaustion. The next day I wondered what those friends of a friend must have thought. How rude of me not to say goodbye. They had probably twigged earlier on in the evening that I was a poorly person but they maybe thought it was just a case of the flu or a 24 hour bug. I was embarrassed at my apparent rudeness but also that these near-strangers had seen me like that. Perhaps they just thought I'd had too much to drink. Perhaps they didn't give it a second thought. Perhaps I worry too much...



Thursday, 6 June 2013

Reality

Today has been hard. I woke up knowing that there would be tears before bedtime...and there are.

It hasn't been the poorliest of days. Infact I managed to do a little bit of baking. But nevertheless these days come every once in a while and there's no rhyme or reason or anything in particular that triggers days like this.

On days like this I can't see the end. All I can see is a life lost to M.E; a life that I miss and that I want back. I want so desperately to be out enjoying the sunshine, or working, or socialising with friends. I just want to be free, but I am stuck and trapped by an illness that cannot be cured. On days like this M.E. feels like a life sentence. There is no way out. There is no choice. On days like this I wish it wasn't this way. People say I will get better but my patience has run out. The positivity and the search for silver linings slips away on days like this and I am hit with the harsh reality of life with an incurable chronic illness. 

There is nothing anyone can do. There is nothing I can do...except to hold on and hope that tomorrow will be a bit brighter. 

Sunday, 2 June 2013

Busy doing nothing

I don't get the Sunday Blues like most people do. That feeling on a Sunday night when your weekend ends and you set yourself up for a full week at work. 

Aren't I lucky? Half Term has come to an end and yet I don't have to face that back-to-work feeling because, well, I don't work. I get another day off. And another day after that. And another after that. And then another...

People are getting ready for work or enjoying their last night before they head back to the daily grind. But not me. I don't have to wake up tomorrow and get out of the house and into work for 9am. I don't have to make a packed lunch or iron a shirt or polish my shoes or pack my handbag. I don't have to face the crammed train carriages or the traffic on the motorway during rush hour. I don't have to wish for 5pm on Friday. 

People often say that they'd give anything to have a day like mine; spending the day in my pyjamas, watching television, lying in bed, "doing nothing". 


I don't do nothing. I never do nothing. (What do they mean by 'nothing' anyway?) 

Every day I battle. I battle with an irregular heartbeat and palpitations, crunching and clicking and painful bones and joints, aching and twitching muscles, blinding headaches, swollen glands, weak and wobbly legs, problems with circulation and temperature, visual disturbances, a brain full of cotton wool that lacks the ability to process the simplest of things and can't remember how to use the toaster... Every single day I grit my teeth and soldier on. Every single day I get out of bed (health willing) and I work harder than I've ever worked, doing a job I don't want and a job I didn't choose. There is no lunch hour. There is no clocking off. This is Day 1037 of working 24/7. 

So yes. Aren't I lucky? For getting to stay at home while people slog it out Monday to Friday.