Tuesday, 2 November 2010
I've realised that despite it supposed to be a place for being positive, it's turned into a place for me to grumble which is not what I had planned at all.
So I have decided to put this space to rest for a bit and have started a new blog which is mainly about food, knitting and reading but I will still be blogging about life with M.E. I'd love it if you joined me at http://eatknitreadblog.blogspot.com/
Hope to see you there!x
Monday, 6 September 2010
- Had an amazing week's holiday last week in Praia da Luz in Portugal. Beautiful beach, gorgeous weather and ME symptoms much improved whilst there due to not having to do very much at all and being able to properly relax.
- Read lots of novels while I was away and amazingly without it causing any real energy dips or suffering any brainfog. (I read The Children's Book by A.S. Byatt, Past Imperfect by Julian Fellowes, Something for the weekend by Pauline McClynn and Enigma by Robert Harris - all good - plus a few easy on the brain chick-lit books that were lying round the apartment
- Got some knitting done (will post another time about that).
- My dissertation is due in in roughly two weeks time and I am seriously behind. All the ME crap started up again pretty much as soon as I got back home and am struggling to get the work done while trying to work round lack of energy, fuzzy brain etc
- I'm still waiting for an appointment to come through at the ME/CFS specialist clinic
- The Happiness Project is pretty much on hold for now although it would be very helpful - more like the survival project at the mo!
- Have got severe financial problems. Money is always a worry for me and has been especially so with the worsening ME as had to turn down a lot of work over the last few months because of it. But the piggy bank is now looking decidedly empty and so once this dissertation is done, I'm going to have to start praying for some freelance work to come along otherwise I don't know how the rent and bills are going to get paid.
- The last time I did some freelance work it caused a massive flare so am in the horrible situation of worrying that any work I do is going to make my health much worse but have no other option but to work
- Everything keeps breaking - in the last few weeks my TV, kettle and phone have all decided to break. This might seem like a minor thing but I still haven't got a phone and lack of TV and v limited internet at home makes me feel really isolated.
- Have been offered a place on a fully-funded Phd (yes, I know this bit should be in the good bit but there is a big catch!). Whereas everyone else will be starting in the next few weeks and therefore will recieve their funding at the same time, my offer is being postponed to Jan 1st as I've had a small extension to do my dissertation due to all the health problems. I had originally thought it would be postponed to Nov/Dec but this extra month that I need to find money for just makes it a lot more scary and of course, there's the fear that depending on how much work I have to do, I may end up making myself too ill to start the course.
- And finally in my list of woes, I have just had some very bad news from some very dear friends of mine. I won't say what it is as it's very private to them but I've been crying all morning for them.
So, to cut a long story short, it would seem that the relaxed, happy Cheryl that came back from holiday has been driven away very quickly and replaced by a very stressed, worried and poorly Cheryl. Sigh.
Just have to keep pushing on and hope for the best. BP's mum gave me a money plant recently so fingers crossed it will work! Or if any of you know any rich benefactors - send them my way!xx
Wednesday, 11 August 2010
Managed to get out of bed for 9am for a call with a potential freelance employer which felt like a major achievement given the mega sleeps of the last few days. The work's not guaranteed but if it does happen it might help sort out my dwindling finances but it's quite intense work so may have a bad effect on my health. Still, we'll cross that bridge when we come to it.
Trying to resist going back to bed now as although I'm really sleepy (well, I have been awake for almost 3 hrs, clearly any normal person would need a nap by now), I need to drag myself to the library and try and get some work done on my dissertation. I'm seriously behind but I'm hoping that if I can just get started on it then the rest will fall into place.
In other news, I've been sent a big stack of questionnaires from the ME/CFS clinic to send back to them, presumably so they can assess how bad I am before they give me an appointment. Hope I get an appointment before the Tories inevitably cut the service!
And in very exciting news, I am going on holiday! It's just for a week at the end of August to a little apartment in Portugal but I am so looking forward to it as I'm sure that some sunshine, doing very little and spending some proper time with the boy panda has got to have a good effect on my health. The only disaster is that I can't find my passport...not sure if it made it to Manchester in the move from London, if I've given it to the charity shop by accident or if it has just vanished. Oh well, will keep looking!x
Monday, 9 August 2010
So it's not great for having a productive day and general sense of awareness (how did I miss a whole day!) but I guess my body wanted to rest for some reason so will try and think of the positives.
Also, while dead to the world in bed, at least I coldn't spend any money!x
Tuesday, 3 August 2010
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
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
Tuesday, 29 June 2010
Had a very fun weekend with amazing weather for the first time in 30 years and was delightful to see lots of friends. However, have now angered the ME fairy and struggling with very bad pain and tiredness as well as a truly evil headache. Worth it for the lovely memories though!
Will be back soon when feeling a bit more human x
Wednesday, 16 June 2010
Friday, 11 June 2010
Anywho who knows me knows that I often get a bit tearful at mass displays of passion and emotion and this was no exception - just watching the start of the South Africa match and had a little cry of happiness. Thank god I actually dozed off just before the opening ceremony...can you imagine the rivers of tears that would have gone on then?!
Other happy things today are that Boy Panda has let me stay at his house while he is at work as it is so much quieter than mine and can actually try and get some studying done. (Where do Pandas actually live? Apart from zoos? Must google...)
And huge thanks to my friend Debbie for giving me the biggest belly laugh I have had in ages - very good for the soul!
Thursday, 10 June 2010
Wednesday, 9 June 2010
I was finally diagnosed with ME/CFS a few months ago after having felt poorly for quite a while and some days it is a real battle and I'm still learning how to manage it properly. But I have realised that trying to be as happy as possible has got to help and so, after reading Gretchen Rubin's "The Happiness Project", I am inspired to start my own happiness project and blog along the way!
Feel free to join me along the journey!
Love The Happy Panda x