Most of you (my friends and family) know that I have Chronic Fatigue Syndrome (CFS). It is also known as Myalgic Encephalomyelitis (M.E) and Chronic Fatigue Immune Deficiency Syndrome (CFIDS).
As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I’m taking part in an international blog, where lots of us with M.E. answer the same basic questions. I’ve made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS / ME.
Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS / ME. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you!
I’m making the assumption that you already know the symptoms, but if not, vaguely this:
What is your name & how long have you had ME / CFS?
Elizabeth, I’ve had ME / CFS for around two years, though it’s been noticeable to other people for about eighteen months.
Where do you live? (Country, State, City – however detailed you want)
Hampton, a leafy village on the edge of London, England.
Age (if you’re willing to share)
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
- I play the double bass rather well. Most of my time at uni was spent lugging Guiseppe, my gorgeous French walnut double bass, around to orchestral rehearsals. I’ve played in tiny churches and massive concert halls. I’ve even played on the back of a truck. My favourite things are symphonies by Brahms, Bruckner, Sibelius and Shostakovich. Sibelius 5 is my all-time favourite piece of music, one year at the Proms I listened to the whole thing standing on tiptoes to see more.
- I could somersault and used to trampoline regularly. I’ve worn sparkly leotards and have a selection of interesting socks.
- My favourite TV programme is Holby City. Not because of its quality, per se, but because of its reliability. From 2004-2011 I moved house 18 times (I think), and in every new home, on Tuesdays it was reliably there, when nothing else felt like home. On Wednesdays, as an intern, I had 90 minutes off in the middle of the day to make up for late-night Alpha courses, and I’d use 60 of them catching up with Holby. Doctors going out with nurses, people being saved from the brink of heart failure, and the odd train wreck at the end of the series to kill off the expensive actress who’s going to ITV. What’s not to love!?
- I live with a semi-retired couple, in a house full of old-people stuff. We’ve got six remote controls, mismatched crockery, a selection of wicker conservatory furniture and you have to put a mat under anything that’s going on the table. Not cool. But I love it. Think of having an extra set of parents, but who aren’t uniquely annoying to you because they remind you of that time you dropped the marmalade when you were six.
- I hate carnations, the bought-from-a-garage apology flower, and my favourite flower is eryngium bourgatii (sea holly). It’s just so spiky and blue! I used to design gardens for a living, so I know Latin names but not common ones for a lot of plants. I have feelings about all of them, not all positive.
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
- I spend at least a day a week (usually two) completely housebound. Most of that time is spent in bed, with normally two bathroom trips and two trips downstairs (one to fetch breakfast and lunch, one for dinner).
- The most obviously disabled part of my day is the train journey home, where as the adrenalin of the day wears off, my legs, back and hands go into random, painful spasms. Everyone else in the carriage looks at me like a weirdo, and judges the bloke who was reluctant to give up the priority seat.
- I can actually run still. Although I use crutches on a day-to-day basis, running is technically a possibility. However, it’s excruciatingly painful, I can do about 40m before my legs give way, and my chest will hurt as if I’m under an elephant for about 15 minutes afterwards. Then I regret it all day, and the next day too, and have worse joint pain for a week. I just miss it so much that occasionally it’s worth the fall-out. When I started using crutches, a colleague tried to buy me an inflatable parrot, to complete the pirate look.
- I have a bus pass, like a pensioner, but unlike a pensioner it’s subject to a mobility assessment. Since getting ill, the best part of my commute, the 15 minutes walk over Vauxhall Bridge, is completely impossible for me if I want to save enough energy for working. So I’m almost always getting buses for one or two stops, because the walk is too much and the tube has staircases. Staircases are my nemesis, I’ll basically a first generation Dalek. A colleague once called me Davros.
- Energy is energy is energy. Physical, emotional and mental tasks all draw power from the same battery, which doesn’t recharge reliably. So if a conversation is tending towards the deep-and-meaningful, I’ll sometimes have to ask my friend or family member to put it on hold until I’ve got home safely, rather than risk wasting too much “moving about energy” on feeling things and getting stuck far from home. When I’m really really exhausted and can barely move, but for some reason I’m not at home in bed, there are a few friends I’ll trust to just make all emotional and mental decisions for me while I “power down”.
What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?
When you see me in person, that time is so unbelievably precious to me, that I want you to value it too. This illness really hurts. Really really hurts. All the time, and every day. Very considerately, people ask if I’m feeling better, when they’d seen me taking pills or I’d cancelled our last shared activity due to illness. And I just want to slap them, if it wouldn’t hurt my hand so much. No, I’m not feeling better, I’m never feeling better, and you looking disappointed isn’t going to do anything to change the situation. You only see me today because yesterday and tomorrow I didn’t and won’t see anybody, just to save up the strength to come and see you. And seeing as I have, why are you asking me to tell you about pain, and pills, and to give more precious time to the disease? Why aren’t we living? Why aren’t we holding onto each other’s every word like it’s the last thing we’ll say to anybody in days? Why are we so unnecessarily mean?
What is the most frustrating aspect for you of living with ME / CFS?
Having to act like a weirdo. I become that person who’s in the way on public transport, who stops irrationally in the street, or who sits down when everyone else is standing up. I’m the person who used to irritate me when I was sprinting to change tube, who’d mess up my lovely neat church services by needing things in large print or wanting the handrail putting out. And I see people like me-five-years-ago getting annoyed and it shows up how driven and self-important and inflexible I was when I was younger. Ouch.
Anything else you’d like to say before finishing?
What you can do to help is make sure that anywhere you go out to is accessible to me. For example, check that your local pub has an accessible loo, and if it does, it isn’t rendered inaccessible by being full of 12 bags of rubbish, a drum kit, the “celebrate Christmas with us” sign in June, or any other rubbish. A pub trip where you can’t even drink is not worth getting out of bed for. And losing a whole crowd of regulars is worth the pub changing their storage habits for. Don’t sit in priority seats if you don’t need them. Don’t use lifts you don’t need, but do complain if they aren’t working. It takes time, but if each able-bodied person made even one “your access isn’t accessible” complaint each year, or did something to initiate change, then those of us without much energy could use it doing things and going places, rather than fighting to be allowed in.
Examples of “accessibility” have included “due to flooding, the train you’re on will be met by a replacement bus service at a non-accessible station. Please crawl upstairs in the rain.” Luckily I spotted the problem at an earlier station, but the complaint letter took 4 months to get a barely-comprehensible and indifferent reply. If everyone on the train had objected, they’d have noticed and changed something.
Oh, and send cake. Cake makes it all better. And kittens. And give me hugs if you see me, but not overenthusiastic ones, as I’m a bit fragile.
Contact details (if you want to give them) – blog, Twitter, FB etc
This is my blog – https://montaguemouse.wordpress.com/
Twitter is @eah39. Twitter is the easiest way to contact me, because it requires very little energy to reply. I’m happy to answer any questions, but might be slow as it takes days to save up enough spare time for them.