Wednesday, 24 April 2013

Crash, bang, wallop

So it appears I'm not having a setback as I'd first thought (and hoped!) It's looking like a proper, full-blown relapse.

This isn't good. It can take months to get over them. Things haven't got any better and are much the same as when I made that video.

It's quite easy to see why this is happening. I had a busy month of March with something planned once a week. Then it was the Easter holidays which is a busy time at home. My body is probably working overtime trying to ward off a stomach bug that has been going around recently. I haven't had the bug but I imagine that's because my immune system works so incredibly hard and is on the highest alert all of the time, which is exhausting. I've also recently started a whole load of new supplements so my body has these to disgust and get used too aswell. It's just a lot for an already poorly body to deal with.

I had wanted to let you all know about the Dr Myhill notes I received recently but it seems it's time to take a proper break. It's my sister's birthday this weekend and I will join in with the celebrations in my pyjamas and with unwashed hair if I have to!

I'm also planning a garden party for M.E Awareness Day (12th May) along with the virtual tea party I mentioned to you all earlier.

On the bright side this is the 'best' relapse I've had. I'm not in bed unable to move. Not today anyway. I'm still able to use the stairs and so I'm not having to reside in our dining room like I did a couple of years ago. Every cloud...

I'm not sure how long I'll be away for but blogging can't be my priority at the moment I'm afraid. Maybe this will give my new readers a chance to catch up with past posts?

Sorry if I'm not keeping up-to-date with messages and texts at the moment. I'm hoping to be back to 'normal' as soon as possible.

Take care all.

Sunday, 21 April 2013

Living online

Social media has allowed me to forget how lonely life can be when you are too poorly to socialise in the normal ways. I have 'met' many new people over the past few years and now the majority of my Facebook friends are poorly people like me. I'm not sure where I'd be if I hadn't made these new friends; people who are in the same boat as me. Being online enables me to keep in touch with friends, old and new. Life would be incredibly lonely without the Internet. There's texting of course but I find that tricky and I'm not always good at remembering to reply to messages.

There is a difference between being rude and being unable to engage in conversation. It hurts my feelings so much that some people think I dramatise and play on feeling poorly. Being online and having written conversations means you don't have to worry about that. I don't use instant messaging/chat because I can't always follow the conversation and I've only braved Skype a couple of times because I suffer from the over exertion afterwards. Posting and commenting on people's Facebook walls or Twitter feeds suits me much better. I can take my time to reply.

Playing a game of Words with Friends can take days to play but that's okay. I live a large part of my life through social media and I'm not ashamed to admit it. My life is consumed by all things illness and, unless yours is too, I don't think you can fully understand that. Sorry. That's not me trying for one-up-man ship...if you want life with illness please, take mine! But I know from my own experience that unless you get it, you don't 'get' it.

Some might say I have no life because I live online. Sometimes I might agree with them. But mostly I would argue that being online allows me to have a life, albeit a virtual one.

Recently though I think I've been living online too much. My blog has, as a result, gone off track and turned into more of an open diary or extended Facebook status. I've been spending so much time online or on my laptop without even realising it, and forgotten to appreciate real life. This blog is partly to blame. Everytime a potential blog post idea pops into my mind I put the idea straight onto my iPad because I worry I'll forget about it if I don't. I need to remind myself that the blog is just an extra.

Every once in a while I have to take these steps back and regroup. I suppose I get carried away. Like with photos. Taking photos and posting them online is less important than appreciating what it is I'm taking the photo of in the first place. Does that make sense? I was essentially documenting my whole life online. That was taking things too far. So I've spent some time offline this week (and it wasn't just because looking at a computer screen was making me feel nauseous and dizzy.)

With this time offline I realised that, recently, I've just been going through the motions. I was forgetting to appreciate certain things. It hit me on a recent little drive that I had once been able to cycle the very route that I was driving. And then came M.E and the fear that I would never be able to drive again. Yet there I was; my arms strong enough to stay on the steering wheel, my legs strong enough to push the peddles, my cognitive function so much improved that I was safe and capable of driving those few miles. For a few weeks I hadn't really been 'living'. I'd forgotten what I'd learnt on my M.E journey so far and I couldn't see the wood for the trees. Taking a step back to reassess things this week was necessary.

And this talk of the online world leads me to question why I blog. I thought it was obvious but maybe it isn't...

Some people don't understand why I want to share so much. (They also can't understand how I can write a blog when I'm meant to be ill. I thought I'd covered that in my last post...) Other people keep saying I'm brave for sharing my story. I am? Or am I being foolish and too open? Should I not be sharing these posts?

Blogging gives me a sense of purpose; something to do! It's an outlet...I've never been especially good at vocalising things to my friends and it's a way of lightening the load on my family.

Saturday, 13 April 2013

Virtual Tea Party - M.E. Awareness Day

Just a quick message today. It's been a busy few weeks with everyone off for the Easter holidays.

This year I want to do something to 'celebrate' International M.E. Awareness Day on the 12th May. Put the date in your diary! I'd love it if you could, and would, join me for a virtual tea party.

Please follow the link to my Facebook page. All the information you'll need is there, including the link to my fundraising page for anyone who has a few pounds to spare. While you're there why not give the blog's Facebook page a like? It's M.E. myself and I. Go on ;-)

Thursday, 11 April 2013

In limbo

The world isn't made for people like us. We have become outcasts.

Magazines are full of exercise plans, the latest films at the cinema or the best new books to read. Cinema trips and reading books are beyond a lot of us sufferers at one time or another. There are diet tips to help improve energy levels and sleep patterns. Quick and easy recipes aren't either of those things for us. Horoscopes talk about work colleagues...well most of us can't work.

TV adverts from charities that need fundraising dominate daytime TV. (These charities clearly have enough money to advertise so frequently...) Our disease is never mentioned. Current TV adverts for nurofen about living lives bigger than pain are getting on my nerves. Nurofen doesn't even touch the surface for most of us. Red bull is another one harping on about how the only limits in life are the ones you set yourself. Bull#$*^.

After a while it can all get you down a bit, even if you're trying not to let it. It eats away at you over the weeks and months and years.

When the man comes to read the meter he comments how lucky I am to have the day off work. I once told the truth and said I was actually chronically ill. He blushed and the conversation died there and then. The postman can't understand why I don't answer the door when he knocks. He has worked out that I'm always here but if I'm not within a few metres of the front door I don't bother trying to make it because I know I'm not quick enough to get there on time.

When I have answered the door with my walking stick in my hand people ask if I've got a sports injury. (I've decided this must mean I look incredibly fit and in shape ;-).) It seems to be such a foreign concept that young people might need mobility aids. It seems odd to me, here in my little bubble, that illness and mobility aids aren't the norm.

We just don't quite fit with the mainstream. Have you any idea how that feels? Of course these things don't only apply to M.E. so perhaps some of you do.

The Paralympics highlighted people's abilities wonderfully, but what about those who can't do those things? No doubt ATOS will have wanted to declare all disabled people as fit for work after London 2012. I found it incredible that they were the sponsors...

I think I am becoming more disheartened and angry as time goes on. I have gone through a long period of accepting my limits but all of a sudden life seems very unfair sometimes. My friends have noticed it in my responses to their "How are things?" questions. Apparently I seem more resigned to it all. Flat. I don't feel low, just fed up sometimes.

But I'm starting to feel like I don't fit anywhere. I'm in limbo. I no longer class myself as bedbound because I only, touchwood, have the odd day of needing bed rest. But I can't really class myself as housebound either. I tend to say I'm 'mostly housebound' anyway but with trying to get back to driving nearly everyday even that doesn't seem accurate.

I feel like a fraud. I'm an inbetween. I have friends who are horribly poorly but because of the little things I am able to do I don't think I quite fit in with them anymore. But then I am a million miles away from my more active ME sufferer friends...and even further away from my healthy friends. I can bake sometimes and I can drive some days now. These past weeks I managed to catch up with friends once a week. Thats great! I haven't managed that since before my relapse in the Summer of 2011.

But shouldn't I be using these extra spoons to do more productive things like empty the dishwasher, put a load of washing on, vacuum my own room, change my own bed? I feel guilty that those things are still beyond me and yet once or twice I've been able to drive to the post office and post a parcel. I've just asked my mum if she'll reteach me how to use the washing machine. Maybe once or twice in the next six months I might manage to do my own laundry. But are my arms strong enough to carry a load of washing?

I'm fed up of feeling lost because of this stupid illness. My head wants one thing, my heart wants another and my brain and body want the complete opposite too. I feel so torn and I'm sure that is exhausting in itself.

This condition is so much more than just symptoms.

And with all of this comes the worry about benefits. Will I be deemed 'fit for work' now that I can make my own cup of coffee? Will my benefits be taken away because I manage to have a shower without my stool most days? How will I survive? Worrying is futile I know. These are just the things that go through my mind sometimes.

Oh I dont know. The word turmoil comes to mind...

Monday, 8 April 2013

Another tick in the box

Guess who has been to put petrol in the car?

I have! For the first time in over two and half years.

I drove the five minute journey by myself and, although quite shaky, my legs and arms held out and I was strong enough and 'with it' enough to do what I'd set out to do. I didn't bottle it either. If I'd ended up in a heap, I'd have ended up in a heap. I've got my emergency contact details on my bracelet. I was covered. I used the Pay at the Pump service to save my legs and also so I didn't overload my poor brain with having to queue and the converse with whoever was behind the kiosk.

I know it must seem weird. One day I can't sew and can barely function and then another I'm able to drive myself to a petrol station and put petrol in the car. I'm not sure I can explain coherently. M.E is nothing if not perplexing.

Flagging a bit now but if I were to let myself think about it this has been another huge achievement. No tears this time though! And FYI I got it dead on £15:00. I've still got it ;-)

I have an ongoing imaginary list of these goals but no deadline within which they need to be done. For example one day I'd like to be able to drive and buy myself a newspaper or pick up my prescription. Things like that.

This blog has given me back a bit of purpose. Thank you for that.

The side you don't see

Apologies in advance but I was feeling a bit 'doom' today. I just feel so ill and I'm aware of that fact. So it's not the worst poorliness I've experienced because when I'm THAT poorly I'm too ill to notice. I think my blog is turning into a mass of moans so I'm sorry. With chronic illness there is an awful lot to moan about though...

My current inability to stomach certain tones of people's voices and the hustle and bustle of the Easter holidays is frustrating me because I feel it pushes people away and plunges me into isolation.

I can't cope with noise but this isn't even noise! It's just people being normal...walking around the house normally, and yet their footsteps are too loud for me and it makes me feel so ill. I've just ordered some ear protectors because they're necessary on days like this.

It's all so loud; the jangle of keys, opening and closing of doors, boiling of the kettle (I have to leave the room when I turn the kettle on to make my own coffee), the ticking clock....

As I got used to the noise sensitivity by mid-afternoon the light sensitivity decided to rear it's ugly head. So there I was reclined in bed wearing two pairs of sunglasses (see attractive photo!) with the blinds shut. Thankfully I have fewer of these days than I used to but just an hour like this is far too much. You have to try to stay calm and not catastrophise but that requires energy and we don't have a lot of that...

Sunday turned into an afternoon of laying with my eyes closed but not sleeping. I couldn't tolerate TV or reading or music. I could only 'be'. People always ask how I manage to not fall asleep. I'm not sure really, but my tiredness isn't sleep-tiredness.

I did a little video after the sensory overload had died down a bit and I could sit up again.

Apologies in advance but I'm not looking my best in this clip. Video editing is beyond me too so you get a lovely close up of my face when I turn the camera on and then off.

You might notice my slow, tired-sounding, laboured speech...that's very normal for days like this. To be able to have the energy to speak is always a plus. For some of you this will be the first time you've ever heard my voice. It doesn't always sound like this! My family find that they can tell what kind of day I'm having by the sound of my voice. The slurred, drunken speech is the most amusing. I'll try to
catch that on camera one time.

I wanted to try a video entry because when you read my posts you might not realise the effort and energy that they require. This video isn't great and doesn't accurately portray how awful I was feeling, but it's a start. I only did it in one take. When you see posts or pictures from me or you get a text to say 'today isn't great' this is the kind of not-great I'm referring to; the constant discomfort, weakness, horrendous nausea and having the room spinning (hence why I lay back half way through.) This is a typical bed day but it is not the worst bed day I've had. Far from it. I wouldn't put you through that...yet. I actually look like I'm moving around okay in the video and I'm able to sit up. That's what a couple of hours of purple time (complete rest) can achieve, even if it is rather dull.

Anyway, the point I'm trying to get across is that while I may be well enough to blog, or post pictures on Facebook, or tweet, it doesn't mean all is well. It's very hard to tell the tone or pace of someone's posts or how animated a person is by reading something they've written.

So here's the first video post...

Saturday, 6 April 2013 stitch at a time

Gone are the days when I could throw together a piece of ikea flat pack furniture and not just because I am physically weaker. Cognitively I've taken a hit too. M.E is a neurological condition afterall.

I'm working on my cognitive function. In the same way I do a few stretches everyday I need to give my brain a little bit of a workout, within reason.

I'm teaching and trusting Mr Brain to follow instructions correctly. He gets incredibly confused so it's important to retrain him when I'm well enough to. Everyone gets this whether they have our medical condition or not. How many of you have gone upstairs for something and them forgotten what it was you went for? Or put the milk in the oven instead of the fridge? For us though this is yet another symptom, or factor to contend with. You might not notice it when you see me but inside my brain is working overtime to follow the conversation we're having, to think up the appropriate response, to remember what has already been said...

I found Cupcakes for Clara on Not On The Highstreet ( perhaps my favourite online shop) These kits are aimed at children but that's perfect for me in my current state of ill health.

I can't do more than about twenty stitches at a time. I then have a break or a rest and do a bit more sewing when I can. There's no rush. Infact I've maybe done my twenty stitches for today.* I now might have to miss out some of my targets for today because I've been wild and done this bit of sewing. That's how severe and serious our condition is. We can't have it all. Far from it.

My arms ache but that'll be because they haven't been used properly for quite a while and not just because of the illness. (For some reason my knees hurt! Silly body!) Activites like this are improving my motor skills too. I've successfully cut out the pieces of felt, threaded the needle... These are things I couldn't even dream about at one time.

I have to be extremely careful though. When the post exertional malaise kicks in it is far from pleasant so you have to learn to stop well before you trigger such a reaction. I'm still learning when that is though. The feeling of having insects crawling around under my scalp, or an itchy brain as I call it, is a telltale sign that I should have stopped about 10 minutes ago. It's very, very tricky.

These kits are leaving me with a huge sense of achievement. Huge. My friends are working 9-5 or more and I'm here, taking days or maybe weeks, to sew together a rabbit. I find it most amusing.

You see we mustn't compare ourselves against others (with the same condition or otherwise.) We must try to take pleasure in what we can do, even if that's being able to lie for hours on end in a darkened room alone...without completely losing your marbles.

*After saying I had probably done my twenty stitches for the day, I carried on only to end up coming over very poorly very suddenly, lying in a heap on the bathroom floor only managing to crawl around and needing to throw up. I still find these sudden crashes very scary but I try to stay calm. I did manage to ring my parents, who were at work, for help though. I got the balance wrong. This was earlier this week and I've been wiped out ever since. I still don't feel strong enough to have a shower or a wash and get changed, never mind my other targets. All because of some sewing!

We suffer so badly for something as minuscule as doing twenty more stitches than we should have done.


Wednesday, 3 April 2013

Capturing moments and memories

Today I feel so at peace. I saw friends yesterday but was sensible using my wheelchair and I didn't stay out for more than a couple of hours. I love those girls. Sometimes in life you come across people who you can be completely at ease with; that's me and my group of friends, both from school and university. Illness has taught me to just be myself. I'm too poorly to try to be anything else. To have people in your life who not only accept you for who you are but love you for it too is a true blessing. They bundled the wheelchair into the car like it's the most ordinary thing for us to be doing. (I've known this group of friends for about ten years. It's only in the last few that I've been ill.) It doesn't seem to phase them. They check I'm okay to walk up and down any steps but in a way that doesn't cause a fuss or make a big deal out of it. They're perfect really. They've always got my back. I didn't have my camera with me yesterday, which is so unlike me, but one of the girls took a few lovely photos that I'll now cherish. I'll look at them with the biggest smile on my face and remember how wonderful yesterday was. Under two hours out of the house might seem like nothing, but to me it is my whole week, or fortnight, or month. My friends gave up their afternoons off to take me out. Me. The girl who often feels she has nothing to offer anymore. But they make me feel important and worthwhile and normal, as if nothing has changed. I don't have to hide my illness from them. (A few of them have seen me during a sudden crash and they all got to see me as a blubbering mess one birthday!) To them I'm still just Anna Jones, even when I don't know who that Anna Jones is anymore.  

I've gone off track again before I've even started! Back to 'business'...

So I take a lot of photos. Always have, probably always will. I take photos everyday and of everything and anything. They're not good photos! I'm no David Bailey, but I like it. I think it's important to be able to capture certain things, things that are seemingly ordinary, so that one day we can look back and reminisce.

You're right, I'd probably save a bucket load of energy if I didn't photograph every little thing and every tiny achievement. But on the days when you feel angry with the world or completely lost and absolutely useless, and you feel like you can't live this life staring at the walls in your bedroom/prison, looking at the photos of the things you have been able to do throughout 'The M.E. Years' allows you to forget about the things that you haven't been able to do. My short term memory isn't wonderful anymore and so the photos act as triggers to remind me of the happier times. There aren't many photos of my dining room days. I was just too hideously poorly to do such a thing. (It's almost as if the dining room days were just a dream...actually make that a nightmare!) I do take photos of the bad days though. That's so that, one day in the future, I can look back and see how far I've come and be proud of myself for never giving up. 

Monday, 1 April 2013


I just did some housework!

I wiped the kitchen surfaces! It doesn't sound much but it's huge to me. And it means there's one less bit of housework my family has to do.

The pace at which I'm walking is dramatically slower now and my temperature is rising which could mean a crash is imminent if I don't rest properly. My brain feels 'itchy' and tight, I'm a bit out of breath, my skin feels funny from the cleaning product, I'm feeling a bit dizzy, my head feels very heavy, I'm shaking, my back hurts...

All because I bent down (I can't crouch yet, my legs aren't strong enough) to get the cleaning spray. Then I ran the water and wet the cloth. I moved from the sink to the surfaces and wiped slowly. I bent down to put a few things in the bin too.

It feels wonderful to have done something for someone else for a change. Maybe I won't manage a shower today now. It might have to be a pj day because of my 'exertion'.

To the government who thinks we're all work-shy scroungers: Good luck finding someone who wants to employ me if this is all I can manage on a not-even-monthly basis! $#^%@£*$!!!!