Monday, 28 January 2013

What a difference a day makes

One photo was taken yesterday. The other was taken just now.

I am not tired after yesterday, but poorly. Post exertional malaise or something like that. My batteries are almost completely flat. I can make it to the toilet by myself, and I can hopefully feed myself too. Makes a huge difference from the person I was yesterday who could drive a car and appear to fit in with the rest of the world. Weird isn't it?! It must be hard to understand but I didn't overdo it yesterday. I lived within my means. Being in bed today is not my fault, I didn't push myself to do too much, intact I was very sensible. This is just how it is. This is why life with this condition can be so frustrating and soul destroying.

Today I am weak and frail. This doesn't feel alien to me anymore. To feel this poorly is normal. I am in bed and can't sit up because of the nausea and dizziness, and the exertion and strength that sitting up requires. I'm not sad. It's par for the course when you have this condition. One step forward, sixteen steps back. I count my blessings though, I am still in my bedroom and not having to move back into the dining room...

There might be a few days like this. I will try to meet most of my baseline targets (my stretches, having purple time, getting some fresh air by sticking my head out of the window...) It's important that my baseline targets are appropriate and not too challenging so that they can be met on days such a this, as well as the better days. If I couldn't meet them, they wouldn't be baseline targets and I would be at risk of entering the boom and bust cycle, of activity than complete rest, activity than complete rest.

I'm still on track, I'm still 'recovering' so don't worry that this week won't be as 'good' as last week for me. It's okay. It's my normal. I'm just posting this to give you the whole picture. I'm okay, just not physically...

Sunday, 27 January 2013

Huge news (well I think so anyway!)

Today I have achieved something that I have been hoping to do for a very long time. I managed to drive, do an 'activity' and then drive home again. It is the second or third time I have managed to do this since September 2010.

I drove the six minute journey into town. I parked. I shuffled around a few shops. And then I drove the six minute journey home again. It was about a thirty minute outing.

The batteries in my legs were dying by the end but I did it. I did it! I don't know what the aftermath will be like but it's all a learning curve. I wasn't by myself; one of my very best friends was my (brave) passenger and afterwards I was able to be honest with her and say that I was flagging a bit, so she left me to rest after we got back to my house and she went home. I really couldn't do any of it without such supportive and understanding people in my life. I'm proud of myself for being honest too, rather than struggling along, hiding behind my smile, pretending that all is well, like I have done before when socialising.

I know, I know, there's such a long way to go and I mustn't get ahead of myself, but this is a fantastic achievement and huge milestone. It means I can build on this and eventually I will be able to drive the twenty minute journey to see my friends. It means I am regaining my independence. It means I can get a taste of normality. I still have months and years ahead of me rehab-wise, and this may be as good as it gets, but to look back to the end of 2010 and see such incredible progress is outstanding. I can remember being in tears one time, devastated and convinced that I would never, ever be well enough to drive again.... What I have achieved today is not something I could do everyday, or even every week, but maybe once in a while I might be able to try it again and this time next year maybe I'll be able to drive to see my friends...

Over the last couple of weeks I have managed to have a shower nearly everyday and I have started to be able to blow dry my hair after washing it, if I'm sitting down with my feet up. This is incredible progress. I think I still feel as poorly, but I think my quality of life is slightly improved. I know I have made progress and I won't give up hope that it might continue over the next few years. I am learning to manage my condition and I have 'got used to it.' I am also in the process of trying to find an M.E-friendly hobby, if such a thing exists!

My rehab programme, as laid out by the CFS/ME clinic, is not a cure and it's not easy or ideal or straightforward (and it's far from okay with regards to proper medical treatment) but it's better than nothing. For me, it is 'working' on some level, even if it's only urging me to count my blessings and celebrate the minuscule achievements.

The room is spinning now, my temperature has gone to-pot and the pain has worsened, as has the fatigue blah blah blah, but that's to be expected and that's 'normal' for me now. My baseline targets have been met in one way or another today. So off I go to have some purple time (another tick on my target sheet) and a quiet afternoon, hopefully not in bed but on the sofa if my body will allow it.

Thursday, 24 January 2013

Broken brain

Now seems a very appropriate time to talk about my broken brain. I am writing this at 2:21am. Is it:
a) because I am cool and stay up this late?
b) because my brain is being naughty? or
c) I can't think of a third at this time of night/morning...

I haven't done enough research (and there can't be that much research out there or we'd be well on the way to fixing the problem) so this post is not necessarily a reliable source of information. I don't read the research done because I'm not well enough to get my head around it yet. I'm just posting the info given to me by the ME/CFS clinic to help my non-suffering friends to understand my condition a bit better.

The hypothalamus is the central control for many automatic functions of the nervous system, or so I'm told. It plays a vital role in maintaining homeostasis, and is involved in several functions of the body, such as

Autonomic Function Control - breathing, blood circulation, digestion...

Endocrine Function Control - adrenal glands, pituitary glands, reproductive glands...

Motor Function Control - walking, balance, coordination

Food and Water Intake Regulation - hence why I need the toilet so often despite rarely being thirsty

Sleep-Wake Cycle Regulation - explains our problems with insomnia, constant fatigue, unrefreshing sleep... (look up circadian rhythm)

Basically, there is evidence that part of me being poorly is due to my hypothalamus being broken. (Dear Sciencey friends. Apologies if I am slaughtering your beloved subject. I always was rubbish at science...)

I was told to think of it as if my brain is a computer, and the power cable has been pulled out, and lots of the information wasn't saved. That is why my brain struggles to regulate my temperature and my appetite and my fatigue levels and my sleep cycle and my short term memory...

I am also told that my brain gets it's wires crossed or gets mixed signals. So, for example, when I feel that I am in pain, I am infact not. It is just my brain telling me that I am. It is receiving the wrong messages because it is broken. Apparently this explains why there is a lack of physical evidence to show that I am suffering.

I have been given a low dosage of citalopram as that can apparently help rectify the 'wrong signals' problem. For me, it has worked well, if only to ease the intensity of the brain fog.

My brain no longer deals with emotions, pain, surprises, etc in the same way as it did when it wasn't broken. I go into shock so easily through no fault of my own. I am getting better at retraining my brain though, and can now cope with some situations much better than at the start of my M.E journey.

So anyway, I hope this post is okay. Bit foggy today so haven't edited it as I'd have liked to (the excitement over the snow has taken its toll!) Hope it sheds some light. Now you'll know what I mean when I describe my brain as broken :-)

Saturday, 19 January 2013

Support network?

Today I feel a bit miffed. Not for me, but for my immediate family. Someone said something the other day that got me thinking...

There is a lack of support for my parents and siblings.

I do honestly feel that if I had any other condition that the situation would be different, ie. there would be support. (I can remember ringing people straight after my diagnosis to let them know how my appointment had gone, and the response was 'Phew, thank god it isn't M.S because that's awful isn't it?' Well yes but, actually, the symptoms are much the same...)

Nobody outside of my immediate family has any idea what we have to contend with; the battles with medical professionals and the welfare state, never mind the actual, physical illness. Nobody has any idea how much of an impact this illness has had on the daily lives of my family. My family have been dealing and coping with this illness for over two years. To deal with it for two days is too long...

It is quite widely known that carers get a raw deal, but I am witnessing it first hand. My family has been left to navigate their way through the maze of caring for a chronically ill family member on their own. It is infuriating! There are no offers of help from friends of the family, afterall I only have M.E so I'm just easily tired and worn out. Nobody takes care of my family. Nobody gives them a break. I sometimes stay with my sister and my parents get a bit of respite but other than that there is nothing. My family wouldn't want it any of way, but the offer of support would mean the world I'm sure.

While people always ask how I am, etc, which, don't get me wrong is lovely, there is nothing more than that. Nothing more than a polite enquiry because it would be 'rude' not to ask. My mum is a wonderfully strong woman so perhaps people feel she is doing a splendid job already. She is! But she is still a human being! A human being whose daughter is incredibly and seriously ill, even if it is 'only M.E'. How must that feel? How must it feel for my dad who is so desperate to include me and to understand? They have known me my whole life and now, as my life has changed beyond recognition, how do they keep a brave face? I am always here so when do they get to take off the mask? I can't give them a proper break away from me and this retched illness...

Some people still maintain that I am 'just tired'. I find it incredibly hurtful that they neglect to read the information I give them about the truth of what my illness is. I believe that many people outside of my family imagine that my illness is very much like depression. I genuinely feel that some people don't take my illness seriously despite hearing about how poorly I am.

They ring to catch up and ask "How's Anna today?" How do you answer that question? How hard must it be to have to answer it truthfully? There is never going to be a day where the response will be that I've made a miraculous recovery like they're expecting. I haven't got a stomach bug or a cold that will disappear is a few days. Of course it's lovely that they ask about me. Of course it is! But I've never heard them ask about how my mum and family are in all of this; how they are coping; how they are surviving? It really is all 'Me Me Me'.

My own friends ask how my family are with regards to my illness. I know that my closest friends are there to take the reins if I need a lift to an appointment or if I needed someone to cook me a meal, or even clean my teeth for me. While I am supported by both family and friends, I fear that the same cannot be said for my own immediate family.

I'm not sure what it is exactly that I want people to do for my family...My condition is so complex that I'm not sure what they could do...just to be there for them maybe? Don't get me wrong, I understand that everyone has their own cross to bear in life...I know that people care about me and my family, but there is a difference between care and actual support.

Monday, 14 January 2013

Well done me!

I hate that I have to be selfish and only think of myself in order to survive. I am not well enough to change my bed, wash and iron my clothes, Hoover my room, do my own food shopping, cook my own meals...I contribute nothing to the running of the house.

Although nobody makes me feel this way, I feel like a burden and there's nothing I can do to unburden my family. But today I managed to do something for them; something that might sound so mundane and 'everyday' but for me, it isn't. I put the shopping away!

You see, the food delivery order arrived early and there was no one home to receive it but me. A year ago the sight of the delivery van and the realisation that I'd have to sign for the delivery, never mind carry the bags down the hall one by one would have probably left me hiding behind the door pretending there was nobody in. I wouldn't have even been able to put the frozen items into the freezer after all that bag carrying and opening the door, and chatting to the delivery man. But twelve months on I was able to quickly dispel the initial panic, take some deep breaths and accept the food order. By myself! I felt brave enough to ask the man if he'd mind carrying it all through to the kitchen for me, which is a huge achievement in itself; to give in and ask for help and share with a stranger that I am not well enough to do it by myself. I chatted about the snow (we have snow here today by the way-we Brits really are obsessed with the weather) and then I walked the delivery man out. After a quick blast of purple time I slowly put all of the shopping away, sitting on the floor to do some of it. It felt wonderful to be doing something, however 'small', for my parents, instead of having to leave it for when they got home.

That was at 12pm. I was still in my pjs. After some more purple time I had a shower and got changed (reaching two of my baseline targets) and then I went into the garden in my wellies for a little wander in the snow. I even made a teeny snowman! (The walking was instead of doing my daily drive, because of the snow.) I've also been popping online throughout to day to 'see' my friends.

It is now just after 6pm and I have crashed; hit by a wave of heat, malaise and general awfulness. I've come upstairs to rest away from the noise of the TV and the clatter of dinner plates going into the dishwasher.

But I am getting back on track after the busyness of the Christmas holidays and have managed to be out of bed for nearly a week which is a good sign. Things are getting back to 'normal.' I am starting to put ticks in boxes on my daily targets chart again after relaxing over the holidays and using my spoons to keep up with the festivities instead of working on my rehab.

Sunday, 13 January 2013

'Good' afternoon

Today I am meant to be in Cambridge seeing two of my best friends. Instead, I am at home. But I have made it as far as the sofa and that's the longest journey I can hope to make at the moment. I know it's largely out of my control but I still feel sad and guilty and disappointed, and many other things, when I have to cancel plans. My friends, as always, are so understanding. I wonder whether it is harder for people to understand why I can't make things now that I am supposedly in recovery... To me, recovery is more a state of mind at the moment. But my friends, the real ones, have stuck by me.

My week ended much better than it started. (My 'much better' and other people's 'much better' is probably very different.) I have been strong enough and well enough to have a shower and start reintroducing my baseline targets and stretches. I can make my own drinks again and get changed out of my pjs and brush my hair... I had forgotten that I should start from the beginning again after Christmas, rather than throwing myself in to the deep end.

In other news, I am trying to grow my hair! I've tried before but wasn't strong enough to get the shampoo out of my hair or to stick at it for longer than a few days. It was exhausting. Some might say I should have pushed myself to do it regardless and my body would have got used to it eventually. I know better than to make my body do something that it can't. I am also unfit after years of being immobile due to illness and so doing tasks as simple of washing my hair is going to increase my heart rate. Such a simple task has become so, so difficult. To wash longer hair my heart would be working harder to pump blood up arms when my arms were raised to wash my hair. Longer hair also needs more taking care of, but I am going to very slowly give it all a go. (I can hear my siblings and my friends rejoicing as they read this!)

So, back to today. It's looking like a 'good' afternoon. I hope to have a shower and get changed and then, if I'm feeling wild, walk the 4 metres to our front gate and back. Crazy I know! That might be it for today but don't forget that people able to do 'simple' things like feeding myself and getting upstairs to bed later and chatting online are all things that use up my valuable spoons.

Have a lovely Sunday afternoon whatever you are, or aren't, getting up to.

P.S. Just a quick note to say that if any of you need a bit of laughter in your life, or something to smile about, I suggest you cut your hair incredibly short and take great pleasure in seeing the crazy styles you wake up with in the morning. Just something to consider...the image that greeted me in the mirror this morning was most amusing! (No, you can't see a photo, cheeky!)

Thursday, 10 January 2013

Write off

It is days like today (and the last couple of days) where I make my greatest achievements of all time. I survive, despite the attempts of my illness to break my spirit and conquer my soul.

Long story short, I feel's the whole poison running through my veins feeling that I dislike the most...but I shall persevere. Today might be a write off but I shall regroup. Tomorrow is another day. I just have to go with it and roll, as best I can, with the punches. Sometimes on days such as this there are tears of frustration and despair and sadness. But that's okay. That's perfectly natural and normal. Most of the time I see grumbling as a waste of energy but one has to get it out of one's system every now and then.

I can't seem to cope well with any kind of emotional overload, be it positive or negative, and we had some news the other day that has knocked the wind out of my sails, on top of the usual M.E loveliness. I imagine I got overexcited and ahead of myself after Christmas too. Perhaps I tried to crack on with getting back to 'normal' too soon. Sometimes I 'forget' just how poorly I really am and paint a brighter picture for myself. How I can forget I don't know. Maybe I've just got used to it. I know I walked way too far last week though. Silly, silly Anna.

One step forward, ten steps back hey...

The nausea is awful. I haven't eaten properly for a few days because of it. It's a catch 22; if I don't eat I will inevitably be weaker but I don't feel up to eating.The pain is zapping me of what little energy I do have. The insomnia and tremors have returned. My attempts at conversation are leaving much to be desired. I'm not strong enough to have a shower. (It's probably for the best that I lead a mostly solitary life!) I can't manage to be on my laptop or online as much as I'd like to. Music is too much. I can manage a bit of tele here and there but mostly I am just having to sit and just 'be'.

My body and brain and just rather out-of-sorts. I don't want to just 'be' but what else can I do. It has taken an age just to write this post because I can't cope with using my laptop for very long. I am 24 years old and I feel like my life resembles that of a toddler...although they have more fun and do more than I can I'm sure!

Feeling a bit sorry for myself...more staring at the same four walls for me this morning.

Monday, 7 January 2013

Back to reality

I admit I'm getting carried away. I've been out twice in the space of a few days which is 'silly' in itself, but so soon after Christmas means it was probably more unwise than usual. Alas I shall reign myself in again. It's hard sometimes though. I am better than I was this time last year, so that in itself is cause for celebration is it not? I just fancied a bit of excitement for a change...and I was well enough to do it.

So now life will return to 'normal' after the Christmas holidays. Once again the only post I will receive will be the dreaded brown envelopes from my good friends at the DWP and no doubt the delivery woman will wonder what that young woman is still doing floating around the house in her dressing gown in the middle of the afternoon. I shall make myself cups of coffee and sit and look out of the window from this prison. I will spend my days with the people I have come to treasure: my online friends, while waiting for my parents to get home from work.

I need to readjust myself to the new routine of everyone being back at work and being here by myself again. I am returning to the unwashed mess that this lovely illness has reduced me to (think Waynetta Slob without the booze and fags!)

I need to find my footing on the ladder of life once again.

Today I feel a bit lost. Over the holidays I had more of a purpose and a goal and now I need to readjust my mindset into seeing rehab and recovery as my ultimate goal again. Today it feels like the road ahead is still as long as it was in the beginning. I am frustrated that some people seem to think I lead a wonderful lifestyle because I never have to go to work. They say they would love to be able to stay at home in bed watching tele all the time and not having to get dressed etc, etc. For those of you who think that, you have got it so wrong. We poorly people are, most of us, ill 24/7; every second of every minute of every day. I would be happy to swap with you anytime...

Dear me, what a dreary post. Sorry! Snap out of it Jones.

On a cheerier note I'd like to say another thank you for reading. I have recently had more views in a single day than I could have ever hoped for. I'm not sure what I was expecting when I started this blog. Maybe just to help my friends and family understand a little better, but from the private messages and comments I've received from people, well, it has surpassed whatever I was hoping to achieve. I feel like I have a purpose, at a time in my life when I wasn't sure I had one anymore. Thank you.

Thursday, 3 January 2013


The changing faces of Anna Jones.

Until now I haven't been keen on posting photos of myself. Usually I take more photos of my socks than my face (don't ask) but I thought it might be good for you to put a face to the name

See if you can guess which are the before-M.E photos and which is the after/during..

The first four photos were taken in the Summer of 2010. The bottom right photo was taken on the day I had my first medical appointment after starting to feel poorly. Funny what you remember...

The last four were taken over the last couple of years. (Top left - June 2011. Bottom right - last weekend.) I've even thrown one with sunglasses on so you can see how fetching I look when the light sensitivity kicks in. Lucky you! I have always been a photo-taker (much to the dismay of my family and friends) but I take them now (not just of myself but of the 'everyday' things and my outings) so that I can look back one day and see how far I've come and what I have achieved during a time when one can feel utterly useless...

You can rarely tell from a photo or from somebody's face what it is that they're going through...

Don't judge a book by its kind, for everyone you meet is fighting a hard battle.


Today I have been OUTSIDE! I spent a few hours out of the house with one of my best friends, mixing with those in the real world.

Today was a huge achievement, especially so soon after Christmas, and it was wonderful. I am so thankful and happy and proud of myself...

But, as a poorly person, it's not as straightforward as it sounds. It was also a huge deal. After a couple of years of illness I am now able to control the anxiety (that comes as a result of being so poorly for so long) and so I was able to get to sleep okay last night. I was also able to get up 'okay' and didn't panic about whether I was well enough to get showered and dressed, let alone get out of the house... I am more laid back about my 'new' life perhaps? Or maybe I'm just used to it? Or maybe, today was a better day? I didn't bother with make-up but wore 'proper' clothes rather than the sack-like comfy items I usually pull on. I did up my own laces (boom!) and was even laid back enough that I forgot to put on my medical I.D bracelet (that has become somewhat of a comfort blanket.)

So I made it out of the house. Sat in an uncomfortable chair in a hot cafe and then walked around a few shops in our small town. And I was thrilled!

But, as sometimes happens now, I am left sitting here with the awful bittersweet feeling that can come after I do something 'normal'. It's as if I'm never satisfied isn't it...

I have had a taste of real life and now it has been snatched away again. It is a huge ordeal to spend just a few hours out of the house, yet I used to be one of those people; who nip in and out of shops and run errands and meet friends on their lunch break and go to the bank and try clothes on in the changing room...

And after socialising I sit and wonder whether my sentences made sense or whether I've said something I shouldn't have or whether I gave a true impression of my poorly life or left people wondering what all this fuss about illness is about. Was I boring because I'm poorly and lack energy now? Did I have anything interesting to talk about? I don't always want to talk about my illness, but I don't really have anything else to talk has become my whole life. It dictates the programmes I watch, the books I read, the food I eat, the clothes I wear...

I don't want to feel like this afterwards. I have no reason to, not when you have friends like mine. (Girls if you're reading I promise with all my heart that it's nothing personal; you are all faultless in everything you do for/with me. This is just yet another byproduct of chronic illness.)

I was nervous beforehand too. Not as much as usual but I was. About the noise and business and my ability to be able to find the right change when I was at the till or cross the road quick enough. Mostly I was nervous about the inevitable aftermath. You begin to dread doing anything that will exacerbate your condition or symptoms.

I am irritated with myself for letting the negatives out-way the joyous positives that I felt earlier today, immediately after my outing. Will the wired feeling have settled enough for me to sleep tonight? Will tomorrow be okay or will it be a bed day, or worse, a spoon-fed day? In truth, tomorrow will be what it will be. It is beyond my control and out of my hands. Worrying is a complete waste of time and energy, but this is very different from the worry I felt pre-illness...I can't put my finger on it, sorry.

I just wish it was all a little more straightforward. The people in my life already do everything possible to make my life easier; this is something that's down to me. It's not my fault, but it's down to me. I can't 'switch it off' like I wish I could, and I don't always have the bittersweet feeling, but when I do have it, well, it's horrible if I'm honest. Still, I refuse to lock myself away and let the anxiety side of things win...

I just don't want it to be like this.

Tuesday, 1 January 2013

White Blank Page

Since I spoke to you last I have had three 'busy' days; Christmas Day, Boxing Day and my cousin's birthday. I have also, true to form, consumed more chocolate than I'd thought humanly possible. Most of my family work in education so everyone has been around over the last couple of weeks because of the school holidays. It has been a lovely Christmas.

It was quite hard though, to be hit once again with the realisation that my life is so limited now. With siblings and friends off out over the festive period I was reminded how much 'normal' people actually get up to. I couldn't join in with many of the games played over the Christmas holidays and it was hard to find myself alone despite a seemingly full house, while my siblings were out catching up with friends.

So, a new year. A fresh start. Fresh, blank pages in the book of life. Day 1 of 2013 is looking like a pj day. My body seems to think I spent last night painting the town red. I, of course, did not. But I am out of bed, and even if I only manage to be downstairs for a few hours, I'm seeing it as a good start. I've been in more pain over the last few weeks than I have for a long time, so I'm 'being kind to myself' and not making my body do anything it doesn't want to do.

I am now entering the third year of 'The M.E Years'. My New Year's resolution is, again, to make no New Year's resolutions ;-) Instead, I will continue to try to live my life daily, rather than monthly or yearly...if that makes sense.

But I can look back and count my blessings. I am overwhelmed by people's kindness and the unconditional love of most of my friends. My life is so different now and so, so am I, but they still accept me and these changes. And my family too...I can't quite put it into words...
And my new friends. To have people in the same position who have accepted me into the fold and become true friends has been vital.

I am lucky that I have a new found appreciation of things. I am content, and find happiness is the smallest, and most basic, of things. I know, I know...I'm one of those annoying people who look at everything through rose tinted glasses...but it's just how I am.

I'm hoping to be up to writing a post about the 'sciencey bits' behind my broken brain very soon, but my brain needs to be working a little better for that post to may be waiting some time haha!

So, Happy New Year all. Here's hoping for happy and healthier times ahead.