Patchworktogether Spotlight: Will McNally on living with Chronic Fatigue Syndrome
How long have you had CFS and how long wereyou suffering with symptoms before you were diagnosed?
Was the diagnosis process difficult?
What symptoms do you experience, and how doesCFS make you feel?
CFS can have both physical and mental effectsas a result of each other. I average between 8-12 hours of sleep each day, and no matter how much sleep I get or how good the sleep is, I feel exhausted upon waking up and therefore struggle to get out of bed.
On particularly bad days, I have slept for around 16+ hours. The feeling itself is a constant, plaguing fatigue: at no point within the last five years have I felt anything other than tired. It’s a constant feeling that if I were to crawl back into bed at any point during the day, I could, and would, fall back into sleep.
Mentally, it also creates an ongoing mindset of procrastination: I almost always find myself in the mindset of “I’ll do it tomorrow, I’m too tired now”. This can, in turn, be detrimental to my mental health as I’ll feel lazy and unaccomplished, yet still exhausted as if I’d been busy all day.
Do you feel that you and your condition aretaken seriously, not only by medical professionals, but by university staff andemployers?
Not at all. I have never found a workplace or educational institution that has taken this condition seriously, and it is either perceived as laziness or caused by a lack of: iron, vitamins, exercise, healthy eating, a good sleep pattern…You’re therefore deemed unenthusiastic and a liability.
The fact is there is very little I can do to combat these issues - at my busiest period in university, I was working 12 hours a day, every day, and sleeping 12 hours a day (including a nap in the afternoon). I missed out on lectures I deemed not important enough to have to fight this fatigue and get out of bed for, and at many I did go to, I would find myself falling asleep.
Did the condition affect your ability to work and study during your degree?
This condition impacted my education and higher education immensely. I did not spend £50,000 over three years to willingly sleep through lectures and avoid classes for a subject I chose and loved. I was forced to miss out on many workshops and lectures during my course because I just felt too exhausted to leave the house.
What are your most effective coping mechanisms?
The only mechanism I found that had any impact was a daily structure when I was in a position where I needed to be productive.
For example, I used to work at a restaurant where I couldn’t be late or this could reflect badly on me, leading me to ensure I was awake, ready, and at work on time. However, this was unhealthy in a different way as it never stopped my fatigue, and instead I felt as if I was suffering through each shift, just wanting to go home and rest.
What do you wish people understood about you and your condition?
I wish people understood that this condition is not just tiredness, or laziness. I was a teenager who, at some point, did not have this fatigue, and I remember how it used to feel to be exhausted, but feel well-rested after a good night’s sleep. That does not happen anymore.
This is not something I, or anyone else who suffers from it, wants. Nobody wants to be unproductive; I would love more than anything to willingly work off 6-7 hours of sleep, and wake up at 7am to see a full working day. I do not enjoy spending half my life in bed or sleeping, and I wish people wouldn’t view it as something that could be fixed “if I just…”, because the main issue with Chronic Fatigue is that it is a collection of symptoms related to energy levels, tiredness and fatigue that don’t have a clear origin or solution.
How could a platform like Patchwork Hub improveyour life and job prospects?
There are not many people out there who give this condition the correct support, because of the lack of awareness around it. Having a platform like Patchwork Hub is incredibly useful, as it means you don’t have to explain to employers, tutors, or co-workers that you’re trying really hard, but you just can’t work to the same pace or same time-frames as most others, and need to find a system that fits both parties. Being able to find not only flexible job opportunities, but also a like-minded community, is a gamechanger.
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