Myalgic Encephalomyelitis: The Twins' Tale
by Natasha & Kirsty Grabham
Natasha - 2014
Kirsty became ill in our last year at secondary school. This had a negative impact on her GCSE results and added to the stress caused by our mum being ill with Hyperventilation Syndrome. It took a long time but eventually the hospital diagnosed her with M.E. A year later, not long after starting college, I also became ill. I was doing English, Film Studies, Art and retaking my Maths GCSE, but I couldn’t cope and had to leave. The hospital also diagnosed me with M.E., which wasn’t a shock because my symptoms were similar to Kirsty’s. We will be 25 this year, which means Kirsty will have had M.E. for 10 years and I will have had it for 9.
There are a lot of different symptoms that people get with M.E. The worst for me are fatigue, sore throats, muscle aches and headaches. Each day has been a struggle because of these symptoms, as well as lesser symptoms which are often present. There was a time during which I had to use a wheelchair when I went out, which was very hard to deal with. Kirsty and I love sports and used to be very active but, since having M.E., even walking up and down the stairs can feel like a chore. Whenever I have done slightly more physical activity than usual, I have hardly been able to walk the next day!
Simple things that most people don’t give a thought to can be extremely difficult. I am passionate about films but often cannot watch them due to Migraines and poor concentration. For the first two years of having this illness I couldn’t read books. It is very frustrating to deal with these things every day.
Inevitably, my mental health has suffered. A few years ago I had a complete nervous breakdown. Not being able to lead a normal life really takes its toll on you. Unfortunately, when you don’t have much to do, your mind goes to dark places, and Kirsty and I thought of awful things like losing our family. I had to have some counselling, and can honestly say it really helped and I am feeling a lot happier now, but it was a long process. I still have days when I feel very frustrated about being ill and some people’s lack of understanding makes it even harder.
My relationship with Kirsty has been fractious at times due to us both being ill and we have taken it out on each other, which we both regret. It is natural for siblings to fall out occasionally but there was a time when we hardly talked at all and, when we did, we just argued. It was an upsetting and hard time for all the family but now we couldn’t be closer. She was always one of my best friends and it is lovely that we have that relationship back again now. It makes it easier to get through this illness having someone who understands exactly what you are going through.
My social life has also suffered a lot. I still have a couple of friends from school that I keep in touch with but I rarely go out and it is hard to miss out on things that most people our age are doing. I think my anxiety has lessened and I am much better at talking to people I don’t know now; there was a while when I was so shy that I could barely look people in the eye when I talked to them and I just felt so nervous.
Recently, I feel that Kirsty and I have made a big leap forward in terms of our health. We have started having acupuncture and have had some physiotherapy with a lady who is now doing some very gentle Pilates with us. We are also seeing a man who is an Osteopath, Nutritionist and Complementary Health Professional. He had M.E. when he was younger so he is very understanding of our condition. Obviously we have been ill for a long time so we realise it won’t change overnight but things are definitely moving forward and, for the first time, I feel positive that we will get better, whereas before I feared we would have this illness forever.
Most of my family have been helpful and supportive, and my mum has done so much for my sister and me. We couldn’t be closer to her and she has done everything she can to help us, for which I will forever be grateful. She works at a primary school and we have both started going in to help. I go in on a Thursday afternoon and I enjoy it, although I need a huge lie down afterwards! It is nice to feel like I have accomplished something and everyone who works there is very nice, so I feel comfortable doing it. There is no way I could have done it last year, which reminds me once again how things are gradually moving forward for Kirsty and me.
Kirsty - 2014
Living with M.E. is many things: frustrating, painful, debilitating, confusing, ... the list goes on. One thing it is not is simple. Nor is it anything other than serious. Some people with M.E. are bed‐bound and struggle to eat anything. Natasha and I are not that severely affected but we are still very limited.
M.E. is quite a hard thing to explain to people, especially when there is so much scepticism out there. I often find myself stammering out an answer like “oh you just get really tired” and kick myself because that doesn’t adequately explain it at all. Of course, there is a lot of information out there for people who want to seek it out, but some people just don’t want to know. Natasha and I have been knocked back by people not accepting our illness and hurling insults at the people who have helped us the most and who would do anything for us. This is still an issue for us. Sadly, most people with M.E. have to deal with this. People may look at us and think we look and seem fine. They don’t know the physical pain any activity causes us, the struggle to concentrate, the frequent headaches, how we often feel sick and the overwhelming fatigue that makes us feel like we are in a permanent daze, and how we often sleep for hours during the day.
Depression is a huge part of the illness. I didn’t suffer with it before I became unwell. I am in a much better place than I was but the depression is always there, trying to claw its way back. I have spent months unable to think of anything but losing my loved ones, thinking I was going to die any time I felt pain and being scared to leave the house.
I am not asking for pity. I am lucky in so many ways. I still manage to enjoy myself and I have amazing support from people around me. I just want M.E. to be taken seriously. It’s not a joke or people being slovenly and choosing not to do anything. It is a real problem and all M.E. sufferers deserve respect and understanding.
Natasha - 2015
Since writing the article last year, Kirsty and I have made a lot of positive steps forward. One of the major changes we have made is our diet. We both filled out nutritional questionnaires and had blood tests done, and a new diet plan was given to us using the Metabolic Balance programme. The diet is specifically tailored to suit each individual, so ours differ slightly, but one of the predominant changes is cutting out wheat and sugar.
At first, the diet was very strict and we weren’t allowed any foods that weren’t on our plans. It was a tough adjustment to make – imagine not being allowed chocolate! However, it has improved our health significantly. We are now allowed a few treat meals each week so it is less intense. It is incredible how much better we have both felt since starting the plan. Without the change in diet, I don’t think we would be close to where we are currently.
Of course, our health is still far from perfect. We still have a lot of physical issues and fatigue but we have been able to increase the amount of activities we do. We have done two courses at Cambridge Regional College together. Both courses lasted eight weeks and were a mixture of activities, from creative writing to photography. It was one day a week for three hours, which was perfect for us. We made some good friends and it was a huge confidence‐boost. In September there is another course we are going to do there, which is longer, and will be another step in the right direction.
In general, I feel much happier and more hopeful for the future. I look forward to new challenges instead of fearing them.
Kirsty - 2015
I am really pleased with the steps Natasha and I have made since our article. The diet has helped us physically (I used to suffer with Irritable Bowel Syndrome) and going to college has helped our confidence.
I still have times when I feel really down and negative about things but I am generally in a more positive place and mindset. Natasha is, too. Apart from the occasional moment, we really support each other. Obviously, we will have to do things separately but we do need each other and enjoy each other’s company as well.
We continue to get great support from our mum and other family members, although there are still issues with others not understanding, which is very hurtful and hard for us.
We have been going to yoga every two weeks on Tuesdays and are volunteering in a charity shop. I feel we are making great strides at a pace that is exactly right for us.