Louise Shepherd, from the UK, is severely ill with M.E. Below is her self-interview on her blog, Chronic Fatigue & ME:
What is your name & how long have you had ME / CFS?
I’m Louise and I was diagnosed with CFS back in August 2013 but I’ve been suffering the onset of the illness for a number of years.
Where do you live?
I live in the county of Lancashire, in the North West region of the UK.
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
1) I know all the words to the Disney film Aladdin
2) I don’t remember my dreams.
3) Most of my childhood memories are what other people have told me, or from photographs. I hardly remember anything from being young myself.
4) Number 3 is likely the reason why I’m struggling to think of anything else.
5) Despite how I may seem, I’m actually very quiet & find it hard to talk to people.
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
1) I experience pain & exhaustion every single day. No amount of pain killers completely takes the pain away, I’m usually left with a dull ache that just won’t go. No amount of sleep takes away the exhaustion. I have days where I am so exhausted that even the simple act of breathing (that you don’t even have to think about doing) can be a struggle. Sometimes I wonder where my body finds the energy to still keep my heart beating.
2) I have days where my staircase may as well be Mount Everest, I have at times stood at the bottom of them & cried because I can’t get up them.
3) To make my own cups of tea, I either have to sit on the kitchen side or on a chair as I can’t stand long enough most days to wait for the kettle to boil. I also can’t fill the kettle too full as it gets too heavy, my hands shake & I’m likely to burn myself.
4) I have Hyper-Sensitivity to Light, Sound & Touch. I rarely open my curtains (or the blinds in the lounge if I’m in there) as it’s even too bright on dull days for my eyes. I have to have the TV on a low volume or not on at all. Even my own voice is too loud for me some days. My skin is so sensitive to touch that it is now too painful for me to have my cats sit on my lap & I have bruises on my legs from where they’ve stood on me. Somedays even resting my own hands on my lap can cause me pain.
5) For the most part, I’m pretty housebound. The times I do go out, the simple act of getting ready – shower, getting dressed, doing my hair & make-up leave me feeling incredibly unwell & exhausted before I’ve left the house. Then being out takes even more out of me so that when I do get back home, I have to go straight to bed. But if I didn’t push & put myself through that, to get out even if at times it’s only once that week, I wouldn’t see or speak to anyone at all expect for my parents.
What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?
That having ME/CFS can be a very lonely existence. In most cases this illness stops you from having a normal social life. It stops you from spending time with your friends or family or people in general as most of us can’t manage to get out at all & it’s not through a lack of wanting to, or being lazy, the fact is, most of us a simply too ill to manage any kind of social interaction. So if you know someone with this horrible illness, please don’t just give up on them because in your eyes they no longer want to spend time with you because that is far from the truth, they would love too! Maybe instead of asking them to go out somewhere, ask if you could go see them. A drink & catch up doesn’t have to be in a cafe, I’m pretty sure we all own a kettle & can get hold of some cakes!
What is the most frustrating aspect for you of living with ME / CFS?
I think for me the most frustrating part is how it affects my memory & general brain function. I used to have a great memory & could absorb & learn things incredibly quickly. Now I’m thankful that I can no longer get out of the car to go into Asda as there’s no way I can remember where it was if I did! My concentration level is very low, I can be talking to someone & part way through I find myself thinking “what am I talking about?” The memory issues cause me to use unnecessary energy – trips up & down the stairs because even though I’ve filled my hoodie pocket with everything I need for the day if I’m staying downstairs, you can be sure I’ll have forgotten something. I’m also very thankful for auto correct as I often struggle to remember how to spell even the simplest of words.
Anything else you’d like to say before finishing?
That I’ve honestly forgotten what it feels like to wake up refreshed, pain free & ready to face the day one job after another. This illness has taken my life without killing me & I want it back so desperately! Even though there’s no cure, I cling to the fact that recovery can be possible & so I keep smiling, try to keep positive & keep fighting for my everyday.
Thank you very much, Louise.