Wednesday, 21 July 2010
Monday, 12 July 2010
Sunday, 11 July 2010
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
Friday, 9 July 2010
So from now on, Mondays will be known as Magic Mondays. I don't know about you but I hate and always have hated Mondays, so I intend to have fill Mondays with inspiring stuff. Possibly a mix of people that inspire me, craft projects I'm working on, books I'm reading or just general things that have caught my eye and make me happy - hopefully it will sooth the pain of miserable Mondays!
Wednesdays will be Wardrobe Wednesdays - I was doing some much needed de-cluttering the other day and discovered lots of lovely things that I had forgotten all about...giving a new twist to the meaning home-shopping! So I thought Wednesdays could be about reminding me about fun and beautiful stuff I already own..as well as a place to show all the fashion/home/design things I covet but frugal budgets won't allow me to!
Fridays will from now on be Foodie Fridays...yum yum! So things I've seen/drunk/eaten that week, exciting recipes or posts from other foodie blogs that I admire.
And finally, Sundays will now be Spoonie Sundays where I'll chat about ME/CFS stuff.
In between I'll still be keeping you updated on how the Happiness Project is going and other whimsical thoughts that I want to share. In the book, Gretchen Rubin talks about blogging every day as it's easier to make yourself do something every day when you're trying to encourage a new habit to stick and I think she's probably right. I like the idea as well of posting as the last thing I do online in the day and then turning the laptop off so let's see how we go!
And of course, I know have the snazzy new camera to play with so will be able to make the blog a lot more pretty from next week, woop!
Hope you're all well and happy!xx
Friday, 2 July 2010
Anyway, just wanted to say thanks for reading and commenting! I know some of you can't follow properly because of not having a google account but it's nice to know you're still there! And also big thanks to Shelli at http://living-the-cfs-life.blogspot.com for very kindly introducing me to the ME/CFS blogging community!
Will update on my Happiness Project properly over the weekend but for now here are my gold stars:
- I didn't cry, throw things or even swear very loudly despite the aforementioned software issues making me BEYOND cross at the waste of time and energy (and the fact that it still doesn't work). Instead I watched a bit of the tennis and thought calming thoughts about things I might knit someday. Perhaps I am finally getting a bit zen ;-)
- Despite not getting work done that I needed to (software again!), I did print out some papers I need for another essay so not wasted trip to the library. (I did get some really funny looks at the printer as the papers were about the BNP - wanted to declare very loudly that it was for a politics essay not for personal interest but couldn't so just went bright red and tried not to make eye contact with anyone!
And here are the things that made me happy today:
- Getting a fab package in the post from montyknits (actually if you like knitting,art,craft etc you should have a look at her blog too http://montyknits.blogspot.com . I'm going to help her out by making something for her new book so had lovely envelope full of beautiful yarn and needles. Can't wait to get started on it!
- Going to the Unicorn and getting some yummy food. The Unicorn is a great co-operative wholefood/organic grocery not far from me and although it's amazing, it's a treat for me as sadly I can't really afford to get lots of food from there plus the walk there and back is beyond me sometimes. But I got some lovely stuff that you just can't get anywhere else: some yummy looking gooseberries, some grapes that look really 'real', like a cartoon (I know that sounds mad but you know how supermarket grapes are all exactly the same size?Well these look like a bunch of grapes that a child would draw, all different shapes and sizes and in a proper triangle!). Oh and some buckwheat - I'm allergic to gluten so always looking for new ideas for tasty food that's not going to make me poorly and have been trying to find some of this stuff for ages! Apologies for the salivating over food: my twitter name isn't eatknitresearch for nothing!;-)
- Remembering that the boy panda bought me an amazing camera for my birthday which I have yet to play with! When I retrieve it from his house I can add pics and stuff here. (Prepare yourself for food porn!)
That's it from me today. Food, then football, then bed for me. Rock and roll, eh?Have good Friday evenings everyone x
Thursday, 1 July 2010
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
- Tackle nagging task
- 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