Thursday 1 July 2010

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

7 comments:

  1. Love the sound of this project, am going to have a look for that book myself. Recognising the positives in a bad situation (eg.ME/CFS) is so important.
    Congrats on a great start, you should be proud of yourself!

    Jess x

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  2. My guess is that the lack of XMRV coverage in the UK press is because, to be blunt, nobody cares about us :-(

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  3. I think david is right. It's the same here in Australia, no media coverage what so ever even though the Red Cross here has banned us from donating blood because of XMRV.

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  4. I've been hearing the rumors, too, that the US government study found a positive link. I may be biased (being from the US), but that holds a lot of weight for me. They just have so much money and resources to do it right. I'm holding my breath and hoping. Still. :)

    Glad to find your blog! I love the Happiness Project. PJ from Lyme is Crazy has been doing that, too. Very worthwhile. Lately, I've been working on The Artist's Way, which has been having the same effect on me.

    I'll have to put your blog on my sidebar and keep up with you now that I've found you! We have a great CFS blogging community. Very helpful and positive, good support. I hope you find it helpful, too.

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  5. I remember the UK press made a big deal about the first study, but there hasn't been anything else since which is a real shame.

    I've also noticed that some CFS/ME charities haven't stated an opinion either.

    I've only read this post, but I'm loving your blog already!

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  6. Hello new friends! Thanks for reading x

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  7. hey - you forgot the gold star for blogging - i havent even bloomin done my one yet and you have done two!!! but glad our emails made you happy - they did me too - helped to break up the very long work day.
    xxx

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