The “F” Word

Which stands for Fatigue, not the other “F” word (though I have been known to use the other “F” word when I’m having a bad day, and sometimes even when I’m not having a bad day 😉 .

The fatigue of Ehlers-Danlos Syndrome hasn’t been an issue for me, although I have it in spades.  The reason I’m so blasé about this subject is that I’ve had Myalgic Encephalomyelitis (M.E.) for 19 years now, one of the cardinal features of which is “fatigue”.  I’m using quotes deliberately, because the Oxford English Dictionary really needs to invent a new word to more accurately describe the “fatigue” experienced by people with M.E.

To put this symptom into context, I was too “fatigued” to clean my teeth……..for 4 whole years.  I was too “fatigued” to roll myself over in bed for another year.  I was so “fatigued” I spent years crawling to the bathroom on my hands and knees, and going downstairs on my bum (and back up on my hands and knees, which was like climbing Everest).  There were even times I was too “fatigued” to open my eyelids for days on end and I didn’t manage to get dressed for nearly 6 years.   We’re talking bone crushing, nausea generating, room spinning, I-think-I’m-dying “fatigue”, where the very life-force has been sucked from every cell in your body until it can barely function.  My GP once said to me “it’s a shame you can’t just stop breathing for a while, because your lungs and diaphragm are so exhausted they could do with 6 months of total rest”.  Calling this “fatigue” doesn’t do it justice, especially when other people use the F word to describe feeling tired after a 6 mile bike-ride, or working a 50 hour week.

I have to admit that I really struggle when I listen to people on EDS forums moaning about being fatigued, then go on to say they’ve been at work/college all day or only managed to do 20 minutes exercise at the gym.  Enough said 😉 .

Fatigue is a symptom which, just like pain, is trying to tell you something.  And, just like pain, you can push through a certain amount of fatigue without doing yourself harm.  But there comes a point when fatigue becomes so severe, and affects your life to such an extent, that you have to deal with it.  Here is how I deal with my fatigue:

  • I gave in to it a lonnnng time ago.  Fighting it just made me sicker until eventually fighting it wasn’t an option.  I was ill-health retired from work and, despite my worst fears, I coped.  I took in a lodger for 10 years to help pay the bills.  And eventually downsized to a smaller home so that I didn’t need a lodger.  If you do have to give up work you may be entitled to an early work’s pension and are definitely entitled to welfare benefits, which I’ll be covering in a separate blog post.
  • The advantage of giving up work is that you can pace and structure your day.  Boom and bust, where you have a good day, over-do it, then spend days in bed recovering, is the worst thing you can do.  It stresses the body, plays havoc with the nervous system, causes inflammation and doesn’t promote healing.  Think carefully about what you can do without causing excessive fatigue, draw up an activity plan and stick to it.  Get up at the same time each day if at all possible.  Structure activities dispersed with rest periods throughout the day (for me, I’ve always had a slump between 3-6pm so try never to arrange to do things during these times and make sure I rest, usually by going to bed for a couple of hours).  It’s also helpful to alternate physical activity with mental activity, as mental activity can be just as draining as doing something physical. Go to bed at the same time each night (regardless whether you actually sleep or not!).  Even when I was bedridden with M.E. I had a pacing schedule.  It consisted of make and eat breakfast, rest for 2 hours, watched 15 minutes of TV, rest for an hour, and so on, but it’s still do-able even in the most extreme of circumstances.  Make use of timers so that you don’t get absorbed in something, like surfing the web, and over-do it.
  • Learn to say “no”, politely but firmly.  As a genuinely caring and giving person, who likes to be liked, this is the one thing I still struggle with.  But you no longer have energy to spare – you need it all yourself so that you can function and have some kind of quality of life.  Say “no” to the social events which you know will put you in bed for a week.  Say “no” to offering to babysit your sister’s kids or walk your friend’s dog.  If the person really cares about you they’ll understand that you’d truly love to help but are simply too ill.  Be selfish.  Put yourself first for a change.  And dump the guilt (or as much of it as you can – women are programmed to feel guilty, I swear it’s genetic 😉 ).
  • Make use of aids and adaptations.  If you’re struggling around the home, you can ask for an Assessment of Need from Social Services.  An Occupational Therapist will then visit you and advise on home aids and adaptations (such as stair-lifts, perching stools, kettle tippers), whilst a Social Worker can assess whether or not you need help with meal preparation and bathing.  If you need a wheelchair or mobility scooter (I love mine!) to enable you to get out more, use them.  More on these subjects in another blog post.
  • Learn to let go.  Who cares that your house is no longer immaculate?  Who cares that painting your toe-nails, or shaving your legs, is a long-forgotten memory?  Tumble dry clothes, even in summer, so you don’t have to iron them.  Make your life as easy on yourself as you can, and stop worrying what other people think: trust me, they genuinely don’t care what you get up to, they’re too busy worrying about their own life.  I’ve been known to walk my dog (when I say “walk”, substitute “scooter”) in my pyjamas, and can go all day without brushing my hair if I know I’m not likely to see anyone.  I’m sitting typing this in bed at 11am on a Friday morning, still in my pjs and having not even had a wash yet.  It’s actually quite liberating ;-).  And while we’re on the subject of letting go, this sadly can include friendships and relationships.  Not everyone is going to be supportive of your change in circumstances and fighting with, being dis-believed, ignored and let down by, those closest to you is completely and utterly soul destroying.  At the beginning of my journey with ill-health I let go of my long-term partner and no less than three of my closest friends.  I also stopped trying to connect with my unsupportive siblings and other family members.  And I can honestly say I haven’t missed any of them for any part of any day.  I now have new friends who are wonderful, funny, caring and kind and who I know are genuinely ‘there’ for me, on my bad days as well as my good 🙂 .
  • Avoid stress.  Yes, I know you’re probably laughing out loud now, because living with a chronic illness is stressful in and of itself, but stress is so bad for the body it actually kills people.  Try to have some fun, or do something relaxing, each and every day.  Take up knitting or meditation.  Play with a pet (or, like me, adopt a pet – one of the perks of being at home all day is that you have time to spend with a  rescue animal).  Take up blogging, painting, photography.  Whatever floats your boat.  Try and spend just a little time outdoors if you can so that you don’t become totally isolated.  I visit a local dog-friendly café every Saturday & Sunday mornings for brunch and a read of the papers.  There are lots of regulars to chat to, it’s an excuse to put a bit of lippy on, and it makes me feel part of the world if only for a couple of hours each week.
  • Deal with mental health issues.  EDS is a life-altering illness.  It affects relationships, work, finances, hobbies, your social life.  No-one sails through all this unscathed and many find talking to a counsellor or getting help from support groups and connecting with others in the same boat useful.  If you feel truly depressed see your GP.
  • Accept help.  Whether it’s from relatives, friends, Social Services care workers, or even if you have to (and can afford to) pay for help yourself.  I know how difficult accepting help is for women, who are usually the linchpin of any family or, if they’re single, fiercely independent and used to doing everything themselves, but that was your old life.  You have a new life now.  I pay for a cleaner to come once a fortnight (it’s all I can afford) to do the jobs which would kill me if I attempted them myself, like changing my bed-sheets, hoovering, cleaning the bath and mopping the floors.  I long ago admitted defeat in terms of doing my own house decorating, pressure washing my patio, or valeting my car, and pay someone to do these kinds of heavy duty tasks.  I simply have to let go of the fact that they will never do the job as well as I would if I could do it myself.  If you’re not on a restricted diet make use of food delivery services like Wiltshire Farm Foods, supermarket ready meals, pre-grated cheese, pre-chopped vegetables and other energy-saving food items.   We’re so lucky to live in a first-world country where help is available in so many forms – make the most of it!
  • Never stand when you can sit.  Never sit when you can lie.  Stop being a martyr and learn to conserve energy (this is where not caring what other people think really comes into its own!).  If you’re having a really bad patch stop in bed for a week, or even two, and don’t feel guilty about it.  You’re ill.  It’s allowed.
  • But most of all, be kind to yourself.  Look after yourself in the way you would look after a loved one if they were sick.  You deserve it.

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