Trying to keep afloat

I feel a bit like ME/CFS is pulling me under at the moment. I feel like it's affecting every element of my life and there's nothing I can do about it because I have no energy.

In no particular order, here are the things that are particularly worrying me today.

• I have been struggling all year to try and keep doing my MSc whilst trying to work but the ME/CFS is making it impossible. I only have a month or so left and yet I am lost and behind in my dissertation and the exhaustion and brainfog are making it feel overwhelming.
• I've been given a conditional offer on a PhD place which I would love to take up but it's dependent on the marks I get on my masters. I got some marks back from the essays that I handed in recently and although I haven't got them all back, I don't think my marks are going to be good enough to fulfill the conditions. Again, the ME/CFS is responsible for most of this and it's just making me feel really tearful and defeated.
• I'm worried about money. I've had to turn down some offers of freelance work recently as I'm just not well enough to do it at the moment but my savings will run out soon and I have bills and debts that need to be paid so the money has to come from somewhere.
• I have to go for some more blood tests and I am so physically scared of them that it makes me sick and tearful just thinking about them. I have put it off for two weeks now but I'm going to have to go and I hate going on my own but there's no one to go with me.
• I feel like my symptoms are getting worse not better. I'm trying so hard to sort out my sleep in the hope that it will make everything else a bit more manageable but can't seem to even do that at the moment. I'm fed up of aching all the time and I'm scared that my brain isn't working how it should do.
• I really miss my friends. They're all spread out around the country but none of them live in Manchester and I'm not well enough to go and see them. Some days I'm fine but other days like today, I feel really alone and isolated.
• I'm tired of living this weird half-life where I can't do the things I need to do let alone the things I want to do and I don't like not feeling like myself anymore.

I have to keep thinking that things will get better but days like today just come out of nowhere and knock me sideways. I know lots of people are suffering much worse than me and I should be grateful for the things that I do have. Let's hope things will be brighter tomorrow x

First spoonie Sunday!

First of all a quick explanation for readers who don't have ME/CFS and are wondering what on earth a 'spoonie' is: it comes from this great explanation of what it's like to have a chronic illness and trying to manage it on a day to day basis http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/ Although written about lupus, it really rings true for M.E. in my experience and it would be great if you read it!

So a quick history of me and M.E., I was diagnosed about 3 or so months ago but have been suffering with symptoms for about 2 years now. Interestingly, the more I learn about this illness, the more I wonder if I have actually had it on and off mildly for years. For me it was a gradual onset. I lived in London, had a really stressful and demanding job involving really long hours and lots of travel and seemed to pick up every cold/bug/infection that I came within a sniff of. I was always a bit tired from burning the candle at both ends all the time.

But then the tiredness came like I've never experienced it before. I needed to sleep in the daytime and my muscles and joints ached for no reason.I constantly had either a sinus infection or a kidney infection and sometimes when I was really lucky, I'd get both of them at the same time. I flitted between days of insomnia followed by bouts of hypersomnia where I'd be sleeping every second I could just so I could keep working.

Then after a particularly rubbish time at work, the company I was working for ran into financial difficulties and went bust. I remember sitting at home (in the noisiest flat in London, which really helped things as you can imagine!) with a face covered in coldsores, aching everywhere and looking for another job when I decided that something had to change.

I applied for a place on an MSc course in Manchester, got a temporary contract job for the summer and then in September made the big move oop north. My symptoms were still bad but when I went to see the doctors about it they put it down to a stressful year and a demanding job and I though they must be right. In October I had an almighty illness - raging fever, sore throat, splitting headache, limbs so heavy and so little energy that I couldn't get off the sofa. It was round the time of the big swine flu panic and it looked like that's what I had, although of course now I suspect it was just the worst flare of symptoms that I'd had till then.

Anyway, even though I recovered a bit from that, I still felt dreadful and was struggling to keep up with my masters and the freelance work that I'm totally dependent on for keeping a roofover my head and filling my tum with food. I went to the new doctors in Manchester quite in despair by this point and was lucky to get a sympathetic doctor who suggested early on that it might be M.E. and started the process of testing.

Unfortunately when I went back for the results, this lovely lady had retired! I then saw a decidedly unsympathetic dr and many many months later, I finally got a diagnosis and just this week (after seeing yet another Dr!) I've finally been referred to the specialist M.E. clinic. Hurrah!

The road to recovery is a long, sometimes frustrating and sometimes upsetting one but in the spirit of the Happiness Project, I'm going to focus on the positive things. If I hadn't been ill, I would never have been brave even to quit work and go freelance and do my masters which I had wanted to for years. I wouldn't have started listening to my body and realising it was unhappy but would have probably just kept on pushing it too hard for years. And finally if I wasn't ill, I would never have met some lovely people!

Right, long old post from me so going to have a little rest now but hope you all had good weekends and hopefully see you for Magic Monday!x

Starting my happiness project

So the point of this blog was to start a Happiness Project whilst trying to work my way back to recovery from ME/CFS. For those of you that haven't heard of it (and I suggest you read it), the Happiness Project was a book I came across by chance and it's wonderful! The author is called Gretchen Rubin and she has a blog here, www.happiness-project.com
which is good for little snippets and short blog posts if you can't manage the whole book.

Anyway, she was pretty happy anyway but spent a year researching and experimenting with little things to see if they could make her and the people around her even happier. I can't copy exactly what she did due to the blasted ME although she is very clear that people should try their own Happiness Projects in their own way, so I am going to try and adapt the Happiness Project to what I can manage and see what happens!

Gretchen splits up the year into a different topic every month which I am going to adopt and funnily enough her first area is Vitality - Boost Energy. The Irony! ME isn't also known as chronic fatigue syndrome for nothing you know! But it is obviously the main goal in trying to manage and recover from ME so boost energy is what I will try and do systematically this month and try and get out of this cycle of boom and crash that I seem to be stuck in at the moment.

So for Boosting Energy July I will be:

• Improving my sleep
• Introducing gentle exercise like yoga or pilates
• De-cluttering
• Tackle nagging task
• Pacing
• Letting myself rest

Those of you that have ME/CFS will realise that none of this is rocket science and good advice that many before me have posted but do to the horrible crashing and still trying to cling on to the work and study that I can still do, I haven't had the time or energy to implement these things properly. But no longer, operation boost energy starts now!

This month is going to be particularly tricky as I have got a lot of pressure on with deadlines for assignments for my masters but I'm hoping that all these measures will help me get through it without making myself ill and of happier of course!

It has been an interesting day in the world of ME/CFS. A while ago a research institute in the US found a link between patients with ME/CFS and a retrovirus called XMRV. As it was early research, they didn't find out whether it was a causal link (i.e. XMRV causes ME/CFS) or if it was just a correlation (i.e. something else causes ME/CFS but XMRV is co-present) but it was important for the ME/CFS sufferers as it raised awareness, showed us that someone is doing research and also raised hope for many that the cause might be found.

A quick study was rushed through in the UK and failed to replicate the findings but seems to have used a different type of people to the US study and a different methodology so can't really compare the two studies properly. Then in the last few days, the blogosphere and twittersphere was all alight with news that not one but two new studies had been done and were ready for publication. It seemed that one found no link but that one of the other studies did. We all waited excitedly for the papers to be published so we could see what they said and the scientists could fight it out.

And where are these papers you ask? Well shockingly, it seems that they have been withheld from publication with no explanation according to a source in the Wall Street Journal. A researcher claims that despite both papers being submitted to peer review and accepted for publication by esteemed journals, senior public health officials had stopped the papers being published, demanding that the scientists reach some sort of consensus. Now, I am pretty new to the world of academia and scientific publishing but this is completely unusual and just not how the system works! There are lots of different theories as to why this might be the case but whatever the case is, lots of ME sufferers are very annoyed, suspicious and disappointed.

What really annoyed me though was the fact that none of this was even whispered about in the British press! I checked the websites of the main newspapers as well as the BBC in their health, science, news, politics and general news sections and not a peep! This is really important for so many people so I did something I've never done before - I wrote to them to suggest they covered it and asked why they hadn't already! I don't expect to get a reply but it felt good just to think that one more person might read those emails and go and find out a bit more about what ME is.

Although I did realise that writing to the newspapers means that it has finally happened. I have finally turned into my Dad! ;-)

Sorry this is a very long post but the last thing is that Gretchen talks a lot about her need for 'gold stars' and I totally recognised myself in it! I need to feel like I've achieved something everyday and be acknowledged for it. It's something that ME makes very difficult as sometimes it feels like you really don't get anything done in a day.

So, my plan is to award myself gold stars everyday for things I'm glad I've got done, even if they're very minor and I hope this will help me deal with those nagging tasks as well!x

Gold stars today:

• Emailling the BBC and the Guardian re: ME and XMRV findings
• Meeting new ME people on Twitter
• Starting the Happiness project
• Finishing my essay on politics and new media! (This one deserves a GIANT gold star!)

Things that made me happy today:

• Talking to my lovely friend montyknits and knowing that I'll be able to help her out tomorrow
• The nice lady in the library giving me a fruit salad for free for no reason
• Getting that flipping essay done! (Can you tell this has been a big deal for me??!!)

Right, I'm pretty shattered after long day in the library and online so going to head home and try and put some of the other resolutions into practice x