To mark M.E. Awareness Day (12th May) we’ve done a Q&A with Victoria (who runs Energy Ball Recipes) to understand how M.E. affected her during the time she struggled with the condition. This is the first time since her illness 10 years ago that she has spoken about it in public.
How long did you have M.E.?
I was in my mid 20s, and it’s hard to know a starting and end point, as I had the symptoms for a very long time before I was properly diagnosed, but it was between 2 and 3 years in total. Mid 2006 to the end of 2008. Similarly, when I was recovering, there was no final date that I recovered, it was a gradual process with setbacks and steps forward.
What causes M.E.?
Gosh, I think there’s a lot of reasons how someone can start with these symptoms and then be told it’s M.E. From what I understand, everyone has a slightly different story. Some Doctors say it’s physical exertion, some that it’s hereditary, some a viral infection / glandular fever and others that it can start from a mental health problem.
For me, I’m pretty sure it was the latter. Although I had completed my degree and started my first full time job, for the previous year my Mum had battled through some tough breast cancer treatment. At the point Mum was given the all clear I started to struggle with depression. That’s possibly when the M.E. started too, but as there are similar symptoms, it wasn’t obvious.
As I came out of the depression, it was clear there was something else going on, and after numerous visits to the Doctor, ruling out other issues, I was diagnosed as fulfilling the NICE criteria for a diagnosis of CFS/ M.E.
What is M.E. exactly?
Good question, so it’s easiest to quote Wikipedia here, who explains that Myalgic Encephalomyelitis is a medical condition characterized by long-term fatigue and other symptoms that limit a person’s ability to carry out ordinary daily activities. It’s also known as Chronic Fatigue Syndrome, which usually helps to describe it better.
How did M.E. make you feel?
I think it’s best to summarise in quotes from my diaries, which I recently found in the loft. It was quite upsetting to read some of it back, given that my life now is completely different, yet I can recall those feelings when I read the words.
So, for example, some days I would sit on the sofa and have a list of things in my head, but I literally couldn’t get up to start the first task. In my diary it said: “I’m struggling to do things, my mind is multi-tasking but my body is stuck.”
I also wrote about regular bad headaches (almost daily), a loss of appetite, pains in my arms and legs and a feeling of complete numbness inside. In my hospital notes, it reads that ‘her main problem is extreme tiredness, as if having run a marathon.’ (Just to be clear, I’ve never actually run a marathon, so I have no idea what that feels like, but it felt the best way to describe it at the time!!)
One of the hardest things was not knowing if I’d ever recover, I don’t know the stats, but a lot of people don’t recover from M.E. fully. It can feel like a vicious circle, the ‘not knowing’ makes it harder to feel positive about the future. I’ve found a copy of a letter I wrote to my Boss at work, which said: “I’m being completely honest when I say that I’m scared that I’ll not get out of this and that I’ll never manage to be the bubbly Victoria again”
Some of the harder things that I read were about trying hard to resist self-harming to relieve the pressures that I felt. Reading these remind me that this condition is real, and very serious.
It was tricky when people didn’t understand and told me to ‘pull yourself together’ or ‘just don’t sleep in the day’ it was hard to explain how I felt to them. If I had a broken arm or leg, it would be easier to comprehend of course.
Did M.E. stop you from doing anything physically?
Yes, a lot. I struggled to walk upstairs some days, or stand up in the shower, my legs sometimes felt like blocks on concrete which was painful.
On the rare occasion that I needed to drive somewhere, I would plan where I could pull over for a 10 minute nap (or two) in order to complete the journey.
My friends still joke about when I turned up to see them, I’d have my PJs on under normal clothes, so I could get back into bed quickly when I got home.
What treatment did you have for M.E.?
Once I was diagnosed at the hospital, there were a few methods of ‘treatment’ that they put me on. It wasn’t really a treatment per se, more of an understanding about how to cope with the condition, which in turn, helped to relieve some of the symptoms, and started the road to recovery.
These were in the format of group talks to learn how to ‘pace’ and ‘grade’ activities. Sounds really basic, but it worked wonders. Imagine you’re making a roast dinner, instead of doing everything at once for an hour or two, take each element as a task, and then focus on that for 10-15 minutes, then take out some time to relax, focus on breathing and some meditation and then carry on with the next task. The dinner is still made, it just takes longer, but the tiredness prevails.
Seeing an Occupational Therapist who understood M.E. was also a big turning point, as she talked about my eating habits, exercise routines and sleep patterns and made suggestions with those which made a difference.
Do you have any special tips for others living with ME?
That would be hard, as I mentioned everyone is different, but I guess the main thing is to make sure they are in the care system and seen regularly to support them with the illness.
My friend mentioned recently that I started to eat little and often rather than eat larger meals, which makes sense, as we all know it keeps up the energy levels. If I had known about my beloved energy balls 10 years ago, perhaps they could have helped me recover sooner. Who knows? I used to have 2 Weetabix with milk for breakfast, then switched to have the first one at 9am and the second one at 10am, which sounds a little bit crazy, but all these little things can add up to a full recovery.
It’s hard, but try to avoid chocolate and sweets. For me, I needed something to make me feel better and chocolate was pretty good at that, but sugar isn’t the best way to boost energy. Boo. There are some good food tips here on the NHS website which can help.
Spend a bit of time in nature where you can, ask a friend or relative to pick you up for a little walk in a woodland or a park, the sunshine works wonders and seeing flowers instead of the same 4 walls will help to clear headaches, even if it’s temporary.
I tried a few complementary therapies, such as energy field healing, reflexology and aromatherapy, which certainly helped a lot to relieve symptoms. Generally, Doctors aren’t fans of these therapies, so it’s something to try for yourself to see if it helps.
Finally, tell your family and closest friends everything. I found it really hard to open up, I felt I was ‘burdening’ people to talk about how I felt, but in reflection, it absolutely wasn’t the case, close family and true friends want to be able to help.
Where can people find out more about M.E.?
Here are the NICE Guidelines to Chronic Fatigue Syndrone and M.E. which are really comprehensive. and the ME Association is great supportive community, I used to get their magazines.