Made By Aimee
"How my needle felt birds help me cope with M.E."
I first started to notice fatigue during my second year at Aberystwyth University, back in 2009. I began napping every day and feeling very lethargic - more than just the average student! I decided to go to the doctor’s after a couple of months, thinking I had Anaemia or something similar and that it would all get sorted. Six years later and I still suffer from serious fatigue and can’t even remember what it feels like to wake up refreshed any more!
When I got the blood test results back from the doctor’s, I was diagnosed with Underactive Thyroid and put onto Levothyroxine. After a year or so, my blood test results were coming back saying I was ‘normal’ (and they still are today) but my fatigue levels were far from it. In fact, they had gradually been getting worse. And it wasn’t just a matter of your average tiredness, perhaps from staying up too late the night before. This fatigue is similar to having the flu, but without the sneezing and snotty nose. This is a type of lethargy that is quite difficult to explain, but it can make me totally useless.
I graduated from university and got a 30 hours a week job, but had to slowly keep decreasing my hours as my fatigue levels continued to increase. By 2013, I was working 15 hours a week as a bookseller in Waterstones, which I absolutely loved, but all I ever seemed to do was work and sleep. My boyfriend was doing a PhD at the time, but when he completed it, he was offered a job in Cambridge. He suggested I give up work when we moved to see if it would help me recover. Unfortunately, I haven’t got any better – in fact, I have gradually got worse.
Today, I have to be quite strict with myself in order to pace properly. I now go to the Cambridgeshire ME/CFS Clinic for Adults, which has given me support and advice that has helped me find an amount of activity that allows me to continue at a fairly constant level with less bad days. Of course, there are still times when I overdo it, for example a day out at the weekend, which I suffer for the next day. But I do try to stick to a schedule, rotating physical activity (such as walking the dog, doing the laundry etc.) with cognitive activity (such as watching TV, browsing the internet etc.) and rest periods. By ‘rest’ I mean I lie on the sofa for half an hour with my eyes closed, listening to an audiobook or relaxation music. I do still nap in the afternoons, but have slowly decreased the amount of time to an hour and a half.
Other than fatigue, M.E. also affects me in other ways, the most noticeable being headaches, which I get on and off for periods of time. Some weeks I may not get any headaches, others I will get one every day, which can really limit the activity I can manage. I also get headaches if I don’t rest enough, or if I skip my afternoon naps. They render me pretty useless when I get them. I also suffer from muscle aches, usually along my legs, but also all over my body. It sometimes feels as if I’ve been for a run, but without the benefits!
Mentally, M.E. causes me to get ‘brain fog’ quite often. Sometimes I can’t think straight, and by the evenings I can barely hold a conversation with my boyfriend, which is very hard for him. I often can’t think of a word I want to say, or I say the wrong word without noticing, and on a daily basis I start a sentence and forget what I was about to say halfway through. For someone who used to be quite articulate, I find this very frustrating.
I must admit that things aren’t easy, and various stresses over time have made my fatigue worse. For example, my Nana passed away last year, and the year before that my boyfriend suffered from a stroke following a car accident (luckily he is now fully recovered, and to look at him you would never know it). Even now things have settled down, I get periods of feeling down and angry, wondering: ‘Why me?’ I look back and try to pinpoint the moment it started, but there were a few emotional stresses as well as a bout of ‘Fresher’s Flu’ (which we now think might have been Glandular Fever) that could have been the trigger. But now, I mostly try to look to the future, and hope this illness will improve so that I can resume a normal life.
There are three things in my life that keep me positive and happy through this tough time. First, my boyfriend and my family, who have been fantastic and supported me during the ordeal of adjusting to my new life. Second, my little dog, Jingle, who never fails to put a smile on my face. She is a rescue dog we have had for three and a half years now. Her little scruffy face and waggy tail brighten up the dullest days, and our daily 14-minute walk gets me out of the house.
The most recent aspect of my life which has changed things for the better, however, is my needle felt birds. I started needle felting about three years ago after going on a day course. I fell in love with the craft so much I couldn’t stop! I have always loved watching garden birds and their antics, so I began making all sorts of different birds: Robins, Blue Tits, Wrens, Blackbirds, and so on. A while ago my boyfriend suggested selling them, after a few of my friends started making requests. And so I put a few on Etsy, which – to my great surprise – sold. Since starting a Facebook page for my birds, interest has increasingly grown so that now I am mostly working by commission. I don’t make a lot of money from my birds, as they take 4-5 hours each to make, which takes me a few days because I can only manage two hours a day, spread throughout the day. But I would rather people were able to afford and enjoy them. They also give me a huge amount of pleasure to make, especially when customers send me photos of the birds in their new homes. At a time in my life where I worried I would never be able to work again, it has boosted my confidence greatly and given me a sense of worth and purpose.
So although M.E. has really turned my life upside down and I sometimes struggle to cope with what it throws at me, I would also say that I am incredibly lucky to have what I have and to be happy throughout what is essentially a debilitating illness.