Monday, 18 November 2013

Soundtrack to my afternoon

At the weekend I hosted an afternoon tea party which seemed pretty successful. I hadn't set up any music but had the radio on and just by chance 6music played some jazz and chilled out tunes which were quite fitting with the ambience. 

Just prior to my visitors arriving I'd been listening to an interview with Kim Gordon from Sonic Youth (one of my big girl crushes!) Music is such a big part of my life and I haven't really shared what I'm in to. Although to be honest, I don't really know where to start!

Even during the bad times with my illness, I've always listened to music, I know I'm lucky as I'm aware some people with ME are very sensitive to sound. I've even dragged myself along exhausted to gigs and festivals as I've wanted to see the particular band/singer so much!

My tastes vary; as a teenager I was into a lot of dance music and indie but listened to a lot of sixties, jazz and classical (I played viola and violin and still do sometimes!), then an old boyfriend was into rap and hip-hop which I started listening to in my late teens/ early twenties. But my main influence with music was my husband. He introduced me to a lot of different bands and genres and I would say he has very similar tastes to myself. When we first got together he made me up a few mix-tapes for the car which I still have (and treasure even though I've nothing to play them on!)

I love to listen to my old dance tunes and reminisce about the past fondly. For me music is so powerful and can really shift my mood both positively and negatively. I do get times when I can't tolerate it though. My husband likes to listen to some pretty avant-garde stuff some days which I can't deal with.

At the moment I'm listening to a lot of funk and soul and rockabilly. Other bands/singers/djs that are special to me include Beck, Moby, Fatboy Slim, Beastie Boys, Jon Spencer Blues Explosion, Jurassic 5, Doves, Orbital, Parliament, Funakdelic, King Creosote, Daft Punk, Qotsa, The Black Keys, The Beta Band and a lot of newer Indie bands.  However my all time favourite band are Belle and Sebastian. And by concindence it wasn't until I started reading Just a Modern Rock Story  that I realised the lead singer Stuart Murdoch had been very unwell with ME while at university and had to take a good few years out. It was during this time that he wrote a lot of his songs. This interview talks a little about his experience of CFS. It appears that he is well nowadays or at least in control of his illness. I've posted you one of my favourites :) Does music play a part in your life? What tunes help you cope on your dark days?

Wednesday, 6 November 2013

What is recovery?

In the last few days, I've seen a few posts both on blogs and on facebook from people who have stated that they consider themselves to have recovered using a particular approach, which has been individual to them and some have felt unable to discuss the reasons behind their recovery. Here's another update on Martine McCutcheon who has shared some of the secrets behind her recovery.  I don't fully understand why people would want to keep it a secret and not help others... Anyway I've been thinking about what recovery is and how it seems to mean different things to different people.

For me eleven years on, I don't consider myself to be 'recovered'. To me being 'recovered' and 'well' is how I felt ten years and eleven months ago. Although I manage to work part time and look after a house (it doesn't resemble the glossy magazine pictures I aspire too though!) as well as looking after my boy and managing to do activities, I still suffer symptoms albeit mild. I'm aware that some schools of thought are that recovery doesn't always mean a return to pre-illness health especially if that lifestyle contributed to you becoming unwell but I would still like to be able to think that recovery could mean that I could still have the option of running a marathon if I wanted to?ha ha!

The question is what can help with recovery?  I've tried a few things over the years. Some more helpful than others and I plan to do another post about those later. Should I have done/be doing more to help myself get well?? A (short) graduated return to full time shift work a few months after getting sick was never going to help my recovery...  but in my defence I was beginning my longed for nursing career and had financial commitments. I was also in denial for a long time. I carried on trying to live the life I had been previously until somewhere along the line I began to accept what was wrong and alter my lifestyle and thought patterns.

Despite this I don't believe that changing your thoughts and taking an exclusively psychological approach to this illness will work (certainly not for me). When I can, relaxation and yoga definitely do make a difference to my fatigue levels and outlook but they are far from being a cure. Examples like the 'lightening process', 'mickel therapy' and 'reverse therapy' do seem to have worked for some sufferers but in addition to the lack of an evidence base for them, the costs involved are pretty significant. One approach I have been attracted to however is that taken by The Optimum Health Clinic. I have watched the DVD and follow them on facebook and I do believe that a holistic approach could offer some benefit. However until I win the lottery I will have to just make do with what the NHS is offering, which is graded exercise and cognitive behavioural therapy.

I could certainly do with letting go of a lot of the guilt and pressure I put on myself on a daily basis. I have to believe that it's not my fault and I am doing my best given the circumstances. Who knows, maybe it will be me telling you my recovery story some day....

Saturday, 2 November 2013

Winter Warmers

So with winter coming, I'm back to knitting and hoping to do a few mini knits for xmas presents. I really love these mug hugs. Probably completely impractical but I think they are quite sweet and keep your cuppa warm, always a bonus when you have kids and are constantly interrupted, returning ten minutes later to a cup of cold tea..  Its a cable stitch which I enjoy doing, I like a bit of a challenge! I had a stressful moment last week though when I found that my little boy had pulled the stitches off the needles....luckily I managed to salvage it - phew! I'm never very good with dropped stitches or mistakes in patterns so it was close to being a disaster! I'm feeling quite pleased with myself for rectifying it. This is what I'm attempting to make and underneath the progress so far.

Given that the temperature has dropped, I've packed away all my summer clothes but there are a few other things that need to be organised for winter. I follow a very good thrifty blog that gives some tips for preparing for winter; A Thrifty Mrs Winter Checklist It gives a lot of practical advice for round the home. However ME/CFS sufferers need to ensure that they pace properly and I tend to start thinking of xmas planning round about now so I don't get overwhelmed in December. A few people have recommended this website; Organised Christmas Countdown I'm going to check it out. Anyway I hope you are keeping warm and I would love to hear about any projects that you have on the go or tips for xmas/ winter planning??