Setting up hopes for tomorrow

Blog entry posted by lior, Jul 1, 2017.

At the end of some days, I think about what is in store for the next day. I plan. I think, ooh, I have no meetings tomorrow, so I could go over to that lovely sunshiney cafe and have a tasty coffee. I could bring my pens and do some drawing. I could bring a book and read, or my magazine. I could bring my sketchbook and do some journalling - actions I've been doing, accomplishments I've made.

The next morning I wake up with brain fog, and I can barely respond to my friends' texts. I realise that I can probably only do one of those things in the cafe. I empty out my bag of pens. After breakfast I still feel half asleep, so I sleep. I wake up in the early afternoon, and feel out, am I well enough to go out today at all?

My head is heavy with sleep. Coffee sometimes makes a bit of a difference. My throat, as normal for mornings, is sore. It's a sign I need to rest.

Sometimes I get out and go anyway. I ignore the heaviness and I take myself one step at a time. I normally have to have a sit down after the stress of deciding what to wear and getting dressed. Sometimes I laugh at myself at how such a little thing has become ridiculous in how difficult it is for me.

I zone out into mind-blankness. My body wants to go! My body wants movement, and joy. My head wants sleep. I manage the internal conflict like a mother of children. I judge which is the greater need. I try to give them both what they want. Movement now, just a little, and rest later. If it ever gets too much, I can go home.

Once I get out the door, I congratulate myself. Well done for leaving the house! Oh it's going to be a lovely day.

I plod down the street and worry that my muscles are getting weaker from all this rest, but that's just anxiousness - I'm fine, really. I'm delicate: my vision is a bit like a handheld camera in a documentary film; each step is a wobble. I hadn't realised how our brains just smooth out vision as we move around.

I struggle with deciding - where shall I go for coffee? The sunshiney cafe is a bus ride away, which would be more energy. I could just go to another one right by my house. I'm so lucky to have this all right by my house.

I used to consider, which part of London shall I explore today? I'd be on a never ending coffee trail around London. It was so much fun. I miss all those wonderful places, and the thrill of the new. Somehow, familiarity is helpful to my recovery. I'm guessing it's because there's less new information to process, so I can have more room for whatever needs doing now.

Have I been cursed? I'm being separated from what I love: adventures, friends, work. Have I done something so bad as to deserve this?

Some days I can stay in the cafe for a few hours and get life admin done. Sometimes I can barely read a paragraph in the newspaper, and I go home pretty quickly. I get home and rest. Again.
lior

About the Author

ME/CFS since Sept 16. Eccentric. Designer. Writes and draws in cafes when possible.
  1. Deep Soul Diver
    Lior, thank you for this beautiful piece of writing. I completely relate to the pain of having been separated from work, friends, and adventures. I also love to draw, and going to a cafe to draw is a real treat, but not one I have had very much in the past year. It just seems easier to stay home where I can have my legs elevated.

    I also find getting dressed very tiring, and often sit down in the middle of it. It's a lot of standing in the process.

    I want to echo what some others have said. I do not think you did anything bad to deserve this. Be kind to yourself.

    It's very, very tough to have this illness. I have been as resilient as I can, but sometimes I feel very depressed about it all. I miss being athletic, musical, working.

    Sending warm regards across the miles.
    lior likes this.
  2. wonderoushope
    Hi Lior, I haven't tested out decaf as I really haven't found one I like. Decaf seems to be okay for most people, even on my elimination diet is allowed. When I was really ill I tried Decaf but thought it gave me migraines (but since doing this diet, I now realise I can get delayed reactions to foods, sometimes days later).

    Yes diet is really important, you will find lots of people on this forum have taken out certain foods to help reduce an overload on the body. I really think it would be best to go through a trained dietitian, so you are not taking out food unnecessarily. So great you have a friend who is a dietitian!

    Unfortunately, I would say caffeine is not always best if you have fatigue, even if you do get a bit of boost for a short period of time. Don't worry I understand the feeling, I love "real coffee"! Mind you I have taken it out for about 4-5 weeks now, and honestly my fatigue is all over the place, but I think there are multiple issues with me going on. Probably more hormonal as well.

    I am an artist (the avatar/pic for my username is not my work by the way :) )
    lior likes this.
  3. taniaaust1
    "zone out into mind-blankness. My body wants to go! My body wants movement, and joy. My head wants sleep."

    If u are feeling like u need to sleep and could if you tried, you probably do then need to sleep. Its always best to prioritise getting the rest you need esp if you havent had this illness for long as to be pushing your body when it needs to sleep can be disasterous for a ME/CFS person even if you wanted to go out mentally
    lior likes this.
  4. lior
    @wonderoushope I've only just realised that I'm not just recovering slowly from glandular fever - that this might be ME/CFS. So I'm going to start looking at food now - I didn't realise I needed to before. My best friend is a dietician so I'm going to show her my food diary and get her recommendations of what I should try.

    I love coffee. Does decaf have the same effect on you? Caffeine helps me work. I'd be so sad to not have that concentration boost each day. I really enjoy working.

    What do you do in your business?
    wonderoushope likes this.
  5. wonderoushope
    I feel ya. I noticed you run your own business in the creative field. Me too! Aghhh, it so hard to know how you going to wake-up. "Will it be a good day? I feel good this morning!" But then by lunchtime I crash. I am sort of lucky that my business is quite flexible, so it works well with the illness.

    I'm sure you probably have already done this, but have you looked into your diet? The reason being, I was having lots of coffee to keep me awake and I think it may have added to the situation. I'm not suggesting you are having lots of coffee, but I realised even a little bit of caffeine can effect me. I am on an elimination diet (as I get food sensitivities) and it's been interesting to say the least to track what my body does with certain foods. I just found out through my new dietitian that I should be having low gi foods and eat every few hours. I have just started more low gi eating, so it's hard to know if will make a difference, but I just finished with an amines challenge, and I am pretty sure chocolate and cocoa, really played with my energy and moods. I would be fine in the morning, and a few hours later after having a few pieces of chocolate I was angry, on edge and then fell in a heap and was exhausted.

    Anyway, something to think about. I just had no clue, how important diet is with this illness.
    lior likes this.
  6. trishrhymes
    I understand that feeling of why me, have I been bad, but then I say, what nonsense, some of the loveliest people I know have more bad things happen - it's just bad luck. Don't give yourself the added burden of guilt. Enjoy the coffee. I hope you soon get strong enough to enjoy your outings more.
    Deep Soul Diver and lior like this.
  7. lior
    Aw thanks @Daffodil. @eric_gladiator it occurred to me that I'm wondering if I was bad because I want to believe in justice and meaning. If I was bad, then there would be a reason for me to be this way.
  8. eric_gladiator
    It's a question I ask myself every day, really and done something so bad to deserve this?
    lior likes this.
  9. Daffodil
    this is very poetically written
    lior likes this.