Hard Choices

I come from a working class northern family who are opinionated and not afraid to speak their minds.  There are no discussions.  Instead there are conversations where the volume gets louder and louder and my Dad inevitably ends up blaming  “bloody immigrants” for everything from climate change to Brexit and my Mum and I just look at each other and roll our eyes ;-).  I have, therefore, never been shy in expressing my thoughts on any given subject (shocker I know 😉 ) even if I  have no idea what I’m talking about.

There was a paragraph in my last post about not knowing what to say to people who disagree with my opinions which my best mate and I discussed recently.  When I was younger, and before I was ill and had energy galore, I used to find the words “I disagree….” or “you are wrong….” an opening for a good debate.  Myself and the other person would then spend a happy hour fighting our respective corners on the subject, it might get quite heated cos we’re never going to change each others minds, and in the end we’d have to agree to disagree.  Wash the conversation down with a bottle of Chardonnay and it made for a good night.  And then I got sick and everything changed.

I don’t have the energy now for a good debate and I find fighting my corner stressful.  That’s not to say I never have conversations with people who share an opposing view to me, my best mate included, but I throw in the towel really quickly because I’m going to need the energy to drive home, cook my tea or put a load of washing on.  It’s too precious to waste arguing the toss about stuff I can’t change, or trying to justify or compare my own experiences to someone else’s.

My lack of energy is the reason I don’t follow research like I used to a decade ago, I’m not on any forums, I can’t read other blogs and don’t engage in lengthy discussions here on my own blog.  I need that energy for other stuff, like keeping myself alive, helping my parents and looking after my lovely Bertie.  I’m baffled by my friends with M.E. on Facebook who follow every political debate, read every newspaper, follow all the research and activism, and are constantly riled up about the state of the planet, Government policy, Brexit and just about everything else.  Where the hell do they find the energy for that?  I can barely brush my teeth most days and I have no clue how they find space in their foggy brain for all that noise.

My friend said “you can’t expect people to never disagree with you” and of course I don’t expect that, but neither can other people expect me to enter into discussions with them I don’t have the energy for.  I see my blog as an online diary on which people can comment, rather than some kind of advice site or forum and I don’t have the energy for it to be anything else.  And I know I have dozens of followers who read all my blog posts but never comment, because they’re too sick to – I, of anyone, get that.

I miss arguing the toss over a nice glass of wine and it’s actually weird to be forced to be mellow.  When my parents are talking shite about a subject (usually politics) I’m desperate to jump in and correct them with my superior knowledge, but these days I just have to keep my trap shut.  Maybe that would have come with age anyways, who knows.  I’ve definitely found as I get older that I care less and less about stuff that used to get me well and truly riled.  It’s not that I’m disengaged, but more that I’m weary of politics and the M.E. world – I’ve heard the arguments for five decades now and nothing ever changes.  If I’m going to use some of my precious energy it won’t be reading a 10 page research document or extrapolating my genetic raw data – it’ll be having lunch with a friend or walking the dog down by the river on a sunny afternoon hoping for a glimpse of the Kingfisher.

Pacing and conserving energy are vital for keeping my health stable.  There’s a lot of information out there about how to pace but it doesn’t really tell you how it’s done.  It doesn’t inform you of the fact you might have to change your entire personality in order to keep your body alive.  It doesn’t tell you that watching Peter Kay on the telly and laughing so much your stomach hurts can rob you of energy for the next 48 hours to the point where you have to live on toast cos you’re too knackered to cook a meal.  It doesn’t tell you that you’re going to have to sit and listen to your dad talking shite about immigration because correcting him uses up energy you’re going to need for a bath later.  It doesn’t tell you that you’re going to have to dumb down your inquisitive mind because you no longer have room in it for information on the mating cycle of Dragonflies because that doesn’t help you get through the day.  THIS is the reality of living with an energy robbing disease and why most people fail spectacularly at pacing, which has been the hardest thing I’ve ever done or will ever do.

 

 

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5 thoughts on “Hard Choices

  1. Sarah

    I’m with you on the emotion side. I say I have to stay on a plateau as any emotional change makes me so ill. I think it’s the brain fog that makes debating difficult, but I have just started on Twitter. I have had M.E for 16 years so have got some idea how things will be. I only go on it when I have a good patch in the day but even when people write what I think is outrageous, I still stay calm. I can’t go out so I find it a link to the outside world and have got into some good chats with people. It lifts my mood, the same way as going out for a coffee with a friend. It distracts my mind to how shit things are, being bedridden. I’m not saying it’s right for everyone but I find I get an adrenaline rush which helps clear the mind fog, but I do pay for it energy wise.
    When I was up and about more, I never felt the need to use social media, but even now, I don’t do facebook. I hate the way people portray an idealic life with photos and achievements, their fake lives where hubby maybe cheating on the wife but posts a photo of a happy family, and others that moan about money but show photos of them in Kenya on safari or on a skiing trip.I don’t know why but it still makes me feel awful that time is ticking by where people fit into so much where months go by stuck in bed.
    Sorry to go on. I’ve had a bad night and think my mood is going to not be great today
    Anyway, liked the post 🙂

    Liked by 2 people

    Reply
    1. Jak Post author

      Sorry to hear you’ve had a bad night Sarah. It’s crap isn’t it?

      I totally agree re Facebook and all the faseness. I’m very careful who I add on there and even when I’ve added people I don’t always follow them. It *is* hard to see people’s holiday photos and children and activities, though like you I know that they are probably no more happy than the rest of us so that helps me cope I think.

      I’d go stark staring mad without the internet but it’s hugely addictive and if I’m not really careful I can have used an entire day’s worth of energy just faffing about and not achieving anything, so I do try to be strict with myself on what I view and how long I view. It is hard though when we lead such isolated lives not to join in with everything.

      Emotions are hugely energy robbing I agree. I think that’s been one of the most difficult parts of being sick for me, ie to have to curb my personality.

      Hugs
      Jak x

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      Reply
  2. Laetitia Lalila

    Good for you, Jak, I think you took a great decision sparing your energy from arguments. It’s so not worth to get upset by whatever people spew out their mouth. So not worth it. Being sick sucks in so many ways, but in a way it forces us to edit out the unnecessary and the decision you took surely it’s for the best.

    Wish you well,
    xoxo

    Liked by 1 person

    Reply
  3. Livvy Woodburn

    Pacing IS so much more than swapping around physical & mental tasks and resting! You definitely are forced to chuck out bits of yourself just to function! It’s heartbreaking! Choosing what to keep & let go is the hardest and fighting to hold onto stuff.. you explained it so well Jak and I felt so bad for feeling awful seeing family on fb being out & about and having fun living, you make me feel more normal that it is ok to feel this! Thank you for sharing your thoughts xxxx

    Liked by 1 person

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  4. Lindsay

    yes! as a lawyer, i love arguing. i went to school to learn how to argue, or at least have a rational debate. but, UGH, it’s soooo exhausting. healthy people don’t always seem to understand how exhausting debating, or even just talking, can be. usually not worth the energy.

    Liked by 1 person

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