I was diagnosed with Chronic Fatigue Syndrome and almost lost my degree
I’m bed-bound for days at a time
“Every time I see you you’ve done something to yourself.” Thank you, Mr. Bouncer. Nothing makes me feel more aware of my disability than drawing attention to my cane when I’m walking into the union at the start of a night out.
Since my diagnosis of Chronic Fatigue Syndrome in May 2015 I have had to adjust to the fact that people aren’t going to notice that I have fantastic make-up skills, that my outfit is fire, or even the words that are coming out of my mouth. They are still going to do a double take and focus on the 40-inch carbon fibre extension attached to my right hand.
This is a rare one for the feed; reminder than we can do colours and we can do vitality and we can do joy. And it comes at a price! After 2 days of being near bed-bound…small milestone for today will be to get out the house for at least 15 mins!#smallvictories #lowspoons #sassyspoonie #chronicallyill #chronicillness #chronicfatiguesyndrome #chronicfatigue #cfs #me #myalgicencephalomyelitis #spoonie #spoons
Chronic Fatigue Syndrome (CFS) affects one in 300 people in the United Kingdom and is most common between the ages of 20 and 40. CFS is used in the UK as an umbrella term for a number of illnesses including Myalgic Encephalomyelitis. And regardless of what you call it, people with this disability struggle with a very complex range of symptoms that can vary in severity from day to day.
The best way I can describe it is as the equivalent to coming down with, suffering from and recovering from the worst flu and the worst hangover of your life, in a continuous cycle. Aches, pains, headaches and aversion to bright lights are usual. Forgetfulness, numbness and nausea are also customary. And then there is the fatigue: not sleepiness, not tiredness, not in need of a nap. I’m talking bed-bound for days, unable to open your eyes or lift your head, nearly comatose fatigue that is insensible to disco-naps, to Pro Plus or Red-Bull. The causes are unknown, the treatments are negligible, and the unpredictable affects are so polarised that you have people raising sceptical eyebrows: are you really sick at all?
I bet this is all starting to sound pretty bleak – there’s more. University students are expected to work hard, and play harder till sunrise, then turn up to the 9am lecture in a onesie. That’s how it was for me in the first two years. I was maintaining my mark average and cycling six miles a day and working part-time in a high pressure retail job and having a social life and doing things like laundry and feeding myself. I remember the first day that something felt “not quite right”.
I was answering a lecturer and suddenly it felt like there was a hot towel stuffed into the front of my skull. There wasn’t enough room for my thoughts. I had to just stop talking mid-sentence.
A few days later I was speaking and I realised that I was slurring. Then, over the course of a few weeks I started losing feeling in my legs and couldn’t cycle to university. I was having embarrassing “accidents”. After a few months, I couldn’t work and was hospitalised due to low-phosphate caused by hyperventilation; my breathing was so laboured in order to simply keep myself upright. University was nearly impossible; my brain simply would not work.
But only nearly.
I am fortunate enough to be studying in the University of Portsmouth – featured in the Top 100 Higher Education Establishments for Student Satisfaction in the United Kingdom. It owes this partly to the support given to students like myself through Additional Support services which are widely advertised across campus and across all communication outlets. They offer tailored technology, mentoring and wellbeing counselling while also giving advice and input to funding bodies regarding individual needs for Disabled Student Allowance.
But more importantly, the students it attracts are possibly the most important assets to its consistently high position. I have met the most understanding, the bravest and the most influential friends in my life who have helped me to finish assignments, to hand in work, and supported me into class, and carried my bag when I have run out of energy. They reassured me that I was strong and capable and still one hell of a student. One hell of a woman. They record lectures that I can’t make it into, they visit me and keep me involved in the world, they send me messages encouraging me to use my energy wisely. And they willingly come with me to the Union for karaoke because clubbing with a cane is nearly impossible.
CFS ensures you appreciate the little things in life and demands that you slow down and take stock of your body and your mind. Being a student with CFS, as much as it is a hindrance, is one of the best things that happened to me. It brought me to people who made me see my disability as an after-thought.
“You have a cane…you’re cool!” Yes, drunken karaoke fresher. But I’m not sure how much weight I should apply to that statement because you’ve got the letter “F” sharpie’d onto your forehead, and you seem to have forgotten your trousers.
Let me correct you: I’m f**king awesome…oh! And I have a cane.
This piece is part of a series on health and mental health. If you have a story you want to tell, email firstname.lastname@example.org to get involved.