For me, a major aspect of living with mild M.E. is about managing daily activities and energy levels. I am constantly planning ahead and making mental priority lists to ensure I can get the most out of my life, whilst getting enough rest to avoid a flare in my symptoms. Life these days is like walking along a tightrope whilst trying to juggle; if you try to throw too many balls in the air at once, there’s every chance you’ll come crashing down to the ground.
This month I will have been unwell with M.E. for two years. I’ve been very fortunate during that time as my symptoms have been mild. Falling ill just before the lockdown meant that I’ve been able to stay at home and rest at the beginning of my illness. My return to work in an office was delayed and then never happened as I ended up being asked to work from home. I think this has given me an amazing opportunity to really listen to my body and not be under the usual pressure to push myself back into the busyness of life, that we are all used to in society during ‘normal’ times. Getting to know people in the M.E. Community online, I’ve had so many people tell me that they started off mild and tried to push through their symptoms (often under the advice of Graded Exercise Therapy programmes) – and now their symptoms are moderate or severe. We do not yet understand M.E., as more biomedical research is desperately needed, but I trust in the advice given to me by my peers and I have made it my utmost priority to rest and look after myself as best as I can.
I am very fortunate as I am now able to work part-time from home in the mornings, but this uses up most of my energy each day and requires me to rest in the afternoons and go to bed early in the evenings. Although my job is desk-based, I have found that cognitive activities seem to use up just as much energy as physical activities. If I were to work in the morning and write a blog article in the afternoon (which I have, indeed, attempted – more fool me), I’ll find my viral symptoms become more prominent and I’ll suffer with worse cognitive dysfunction as the day goes on (not being able to find the right words, having issues with speech, not being able to concentrate, taking hot trays out of the oven with my bare hands…). The only thing that seems to help is getting a good balance of (mental, physical and emotional) activity and rest.
So, having my birthday coming up and wanting to do something to celebrate, my first priority was to book the whole week off work in order to free up some energy. Luckily my birthday was mid-week this year, which gave me plenty of time to rest before and after my big day. I decided to treat myself and – drum roll please – tick something off my bucket list! I think a lot of people living with a chronic illness will agree that having a haircut is a massive energy expense and, therefore, very much a treat. Well, I decided to not only have my hair cut, but also to have highlights! I’ve never had my hair coloured at the hairdressers before and I felt it was something I wanted to try at least once in my life, so why not go for it? There are so many people who are unwell with moderate or severe M.E. and can only dream of such an outing, so I feel I owe it to them to get on and embrace life’s experiences, as much as I possibly can.
On the day itself I got up early (as usual) and my husband prepared me a lovely birthday breakfast, (including a cup of coffee, to give me an energy boost for the appointment!). On my way to the hairdressers, I received a number of text messages from friends and family members wishing me a happy birthday. I replied to tell them my exciting news: ‘I’m getting my hair cut!’. Anyone in the chronic illness community will understand the implications of such a statement but, disappointingly, the response I received from multiple friends and family was, ‘That’s good. Are you doing anything special for your birthday?’
‘Are you doing anything special for your birthday?’
I didn’t really know how to reply as ‘Yes! I’m having my hair cut’ sounded a bit snarky! The question left me feeling upset and disparate.
The hair appointment itself was enjoyable but very tiring. The salon environment was bright and loud and it felt strange to be amongst other people, now that I spend so much of my time at home in a quiet environment. I used the time to practice some of the breathing exercises I’ve been learning as part of a Mindfulness Course I’m taking and I continued to reply to the birthday messages that were steadily coming in from my friends and family.
I popped in to see my parents after my appointment, as I haven’t spent time with them in a long time and I knew they wanted to see me. It wasn’t a sensible choice in terms of my M.E. and, by the time I got home, I was exhausted and my symptoms were flaring. Having my hair cut was a really big achievement but now, I needed to rest.
However, the birthday messages kept coming in and it honestly felt overwhelming. I was receiving message after message asking if hubby was taking me out? Was I doing anything special in the evening? Was I going out for dinner? Would I celebrate properly at the weekend? It felt relentless and it just served to make me realise how little people understand about the illness I’ve been living with for almost two years now.
It honestly felt overwhelming.
I’m very glad to say there are a few good souls who have taken the time to understand my illness. Friends who knew that having my hair cut was a big deal and who understood that going out and doing a thing was a major treat, which would cost me physically over the coming days. I made it through the rest of the day, trying to respond to more birthday messages, and realising just how far I have drifted away from ‘normal’ life over the past couple of years.
But guess what cheered me up and kept me going? Animal Crossing: New Horizons, of course! My lovely villagers put on an amazing birthday party in the game, which I was able to enjoy whilst lying on the sofa. It really was perfect. I even turned up to my surprise party wearing cosy pink pyjamas! There was a cake, a present and a fun piñata (which actually wore me out a bit as I had to whack it quite a few times to break it!). K.K. Slider sang Happy Birthday to me and I received some heartfelt messages from the villagers. It was a wonderful way to celebrate: low energy and high enjoyment.
I also had another special treat as one of my lovely online friends organised a birthday party for me on her Island (later in the week, to allow me time to recover from my outing!) and it was amazing. She’d set up a party area and decorated it with balloons, confetti machines and a dance mat. There were presents and a birthday cake, with candles to blow out. She even put on a fireworks display! The whole party was themed in blue, just for me, and my friend was even wearing a blue party dress. It made us laugh though because me, being me, had turned up wearing a red dress. I never wear red. What had I been thinking?!
After the fireworks we had a treasure hunt. I buried a thank you present for my amazing host and she ran around her Island trying to find it. We sat and chatted for a while and then realised it was starting to get late. So, we climbed up on to a cliff, overlooking the sea, and sat quietly together enjoying the magical sunset.
I also treated myself to a delicious batch of cookies made by the amazing Hannah, who also has M.E. and who is the talent behind Sunshine Makes and Bakes. I ate one cookie a day (heated in the microwave for extra yumminess!) for six days, which really brightened my whole week! Hannah enjoyed it too as I gave her a daily cookie update, ranking them in order of my favourite, as follows (for anyone who is interested): in at number one comes Red Velvet, a close second, Cherry Bakewell then; Ginger and White Chocolate, Salted Caramel, Double Chocolate, and Chocolate Chip. I also need to try the Oatmeal and Raisin, so I’ll have to place another order soon! I usually order myself a supermarket caterpillar cake each year but this year I thought it would be lovely to order a special treat from one of my new-found friends. Being part of the M.E. Community and playing Animal Crossing: New Horizons really does make all the difference; on my birthday and every day of the year.