May 12 Mass Observation: a day in the life of ME

I wrote this post to take part in the Mass Observation day that this year coincides with the international ME/CFS awareness day, thinking I could kill two birds with one stone. The idea of the mass observation is that it captures the every day lives of people int the UK. Although I’m not actually in the UK at the moment I thought that my entry could represent those Brits who choose to spend time abroad for what ever reason. I have to admit today isn’t a particularly ordinary day  either, because yesterday I did something I rarely do, something that used more energy than I knew I had easily available. I chose to have some fun a pay for the consequences later. Because of the illness Myalgic Encaphalomyelitis (otherwise known as M.E.) I am usually very careful with how I spend my energy.

I woke up feeling exhausted and as though I’d been hit by a bus, stiff, heavy and aching all over. I got up to get my hot water with lemon and then went back to bed. It’s Saturday and I’ve decided to enjoy the luxury of allowing myself to come around slowly and read in bed. Rehydrating myself helps the general malaise a little and after an hours’ reading some light ‘chic lit’ I feel almost ready to face the world. I get up, switch on my essential oil diffuser with an immune boosting blend of oils and practise my tai chi. At first, I have to bat away thoughts about how foolish it was to allow myself to dance 3 times last night, because of an awareness of how much worse my body feels today than normal, but then I notice what a beautiful day it is and I am washed with a sense of well-being. I’m so lucky to be here in Spain looking out over the stunning valley, so beautifully green after a long, wet winter. I also feel so grateful that this quiet retreat, chosen for how well the relaxed pace of life supports my well-being, also offers the occasional opportunity to enjoy live music and have a little dance. So what if I’m going to pay for the dancing, it feels so good to have had some rare fun!

Because I didn’t get straight out of bed, by the time I’ve finished my tai chi all I can think about is how hungry I am. I’m so very tempted to miss my meditation and get straight to breakfast but I know how much my meditation supports my well-being so I compromise with a very short guided meditation.

I enjoy a special breakfast of scrambled eggs with asparagus sat on my terrace looking at the view once again paying attention to how lucky I am. Also feeling rather virtuous for including something green in my breakfast!

I don’t sit down at my computer until 10.30, I try to have a light day of work on Saturday, but I’ve not been able to keep up this week so I have a lot to do. On top of that It’s a very special day. It’s the international ME/CFS awareness day so my first job is to start raising awareness on social media. I share some of my old awareness day’s blogs on twitter and Facebook, trying not to feel guilty that I didn’t find the time to write a fresh one for this year.

Now it’s time I got on with my real work, I have a set of case notes to write, a free online workshop to promote and some emails to send. (I run my own online business as a holistic life coach supporting people with energy limiting chronic illness, although being self-employed can often be quite a pressure, at least I working from home I can adapt to the needs of the illness and rest when I need to).

I feel a sense of rising overwhelm but reassure myself that if I take it little by little and have lots of breaks, it will be amazing what I can achieve even if my energy is particularly low. I also promise myself I can stop whenever I feel I need to.

It’s now 2pm and I have to admit that I’ve worked through without a proper break so am really ready to stop now. I’m happy with what I’ve achieved though. I still have more to do to promote my workshop but that can wait till tomorrow. All other things on the urgent list got completed including more social media awareness advocacy, retweeting as many #millionsmissing posts as I could.

Now for lunch and a long afternoon rest.

It’s now Sunday, I was hoping I’d finish this yesterday, but as I probably could have predicted, I ran out of steam. I did continue to have a lovely day though.

After a salad lunch topped off by fresh strawberries (one of the few fruits that I can eat because of my gut symptoms) I rested for a couple of hours. First a bit of vitamin D therapy (sunbathing for about half an hour) and then gentle reading in the shade.  I’ve had to learn how to enjoy resting as it plays such a big part in my life now. I’ve learned to value it as something that makes the other things that I do possible. It took a while for me to stop resenting that but I’ve now turned being happy despite chronic illness into a art form, an outlet for my creativity.

resting in the shade
resting in the shade

Instead of yoga today, I decided I would spend my afternoon energy on a little gardening on a veggie plot that I share with friend at the bottom of the village. Both activities seem to give me back as much energy as they use, if not more, so I’m happy interchanging them. I spent a pleasant 45 minutes planting some beans and mange tout. Then I called in on a friend on my way back up the hill, for a gentle half hour chat.

A day in my life with M.E. recorded for a mass observation dayAlthough the gardening had boosted my energy, by the time I got home I was pretty exhausted (Friday night and the busy week as whole was catching up with me). I managed to put together a quick meal (spring green chow mein) and then collapsed on the sofa with my book (when I’m this tired I know I can’t watch TV as the whole screen experience is too stimulating). But even sitting up on the sofa was a struggle so I took myself of to bed by 9.30pm. I loaded my essential oil diffuser with oils to help me let go of the tension of my exhaustion and relax and fall asleep, hoping that I’d have one of my better nights and actually wake up refreshed.

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