One of the things I have never sought to hide here at
It is hard to pinpoint why I can sometimes veer off course. Indeed early this morning, as Ste sat up in bed with his headphones jammed firmly in his ears, committed to his morning
Flow is not possible. The fug, the fog, the pain, the…disconnect and hyperawareness makes it impossible. “Normally, absorption in a task – an immersive flow – can lead you to forget that you feel sick, but my fatigue made such a state impossible. “ Again, running through quicksand…it renders effortlessness forever tantalisingly out of reach. You never get traction. You’re always reaching. Just trying to get to stable ground from which you can take a certain, solid step forward.
Sarah Wilson.
Sometimes the pills work. Sometimes they don’t. Sometimes I am lazer focused. Sometimes I can barely remember how to boil the kettle. Always somewhere I will be aching. It is more physical than depression. More emotional than exhaustion. As Sarah Wilson so eloquently says “Contact with people hurts. Humans really are too much for me when I’m not good. Why? I don’t know. It’s the accountability, I think. I don’t want to explain myself. I can’t. How can I?”.
Above all else it is a terrible bore. I bore myself with it and I know I bore those who cannot understand why life, work and commitment to almost everything is so very hard. How much my willingness to commit is so frequently compromised by my sheer inability to function. How utterly frustrating it is to not always be you. To be a lesser version of yourself than those around you imagine you should be. To so frequently disappoint.
As of today, and yesterday, one of the worst symptoms I experience is daytime sleepiness. I can spit out two hours of decent work and then my eyes will be closing, Drooping as if I haven’t slept for a week. So I will get on the floor and do my
In the evening I am as awake as I can only imagine normal people are the moment they open their eyes. So awake that when it comes to bedtime I begin my usual struggle – a series of rather dramatic sleep rituals I remain deeply suspicious about altering – in an effort to switch my mind off again.
Much of the problem with chronic illness is always about accepting it and teaching ourselves to manoeuvre around it. To accept that if we do more than our bodies can cope with in a flurry of lovely days, we will pay for it with the flare of forgotten symptoms. That in my case restless legs will drive me crackers (but the medication for them: a drug for Parkinsons Disease will make me even sleepier), I will sporadically forget to breathe, my gums will bleed, the sides of my face will swell, my whole body will throb and I will not be able to pull a decent sentence together without describing every object as a “dooberry bit“. As in “Pass me the dooberry bit please. “ (Could be the remote control, my phone, a hairbrush or a salt cellar!) or “Did you remember to pick up my dooberry bit?” (Ummm… milk? My prescription? My son??!!). It is woeful. In fact at times like these I AM woeful. Bless my stupid heart.
I am telling you this so you understood why I come and go. Why my work here at
Today I am trying. I am sitting here wrapped in a
Now do be a dear and pass me my dooberry bit won’t you?
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Yes. Yes, absolutely. I know you have a different illness (I have atypical Parkinson’s) but what you say is so true for me too. It’s all chronic illness, chronic suffering, and it can be so horribly hard to get up and keep going. The club that none of us — families included — wished to join.
Your description of the sleepiness made me laugh a little though. Those meds! I’ve fallen asleep in the midst of conversations, then apologized profusely (“No really, you aren’t that boring! I swear!”) No easy answers to any of it, but I wish you many better days. And am impressed you accomplish as much as you do.
Oh Alison. This could not have come at a better time for me. I have it, too, but never had it really explained to me — just that “you have hypothyroidism.” I wasn’t aware of all the symptoms, other than the basics. I’ve been asking myself why I am always so damn tired — I’m trying to do everything right! My blood sugar levels were affected, my cholesterol increased, and I have energy in fits and starts. God bless you for this letter — I feel better just knowing I am not crazy! Right there with you! Here I thought it was just menopause or “getting older.” If I hear one more doctor start every f***ing conversation with “As we get older, dear, we …….” I will not be responsible for my actions. Thank you. I will hold you in my thoughts as we navigate this together..
Oh Alison, that sounds really grim! I can’t pass you the dooberry bit, but I hope you’ll accept my sympathy.
My partner has had ME for more than 15 years now – a very different illness, but also ‘invisible’ and therefore easily dismissed by others (as ‘laziness’, particularly, but also hypochondria). I think it’s hard enough to have an illness like this without having to cope with the lack of understanding (even from me, sometimes!). So I wish you well with dealing with other people, and with finding the best possible treatment.
My heart breaks for you, I , too, am in the club no one wished to join, but it is fibromyalgia, my symptoms are just like yours. So sorry to know you cope with this also. Gentle hugs.
I was thinking the same thing. Fibromyalgia is do similar so I completely relate to how you feel and it’s not easy!
I’ve a barely functioning thyroid, colitis, trigiminal neuralgia and osteoarthritis and recovering from skin cancer. Known for humour being gregarious but Oh the tiredness the false smile most times…I look after my grandsons three times a week and it’s tough !
I don’t moan about it, I mask a lot but I cry when alone. I am empathetic my lovely. The invisible illnesses the worse to deal with. No one really sees.
Huge Hugs. I have followed you from day one and think you’re amazing.
it is so frustrating to deal with a chronic yet “invisible” health condition. you seem to approach it with a lot of humor which is great. I have chronic kidney stone issues that require a crazy diet and times when I am in pain or totally down for the count. I hope you aren’t down for long-it sounds like you have a good grip on taking a time out for health. thank you for sharing this part of your life with us and not just the awesome days. love and light to you <3
Allyson, just take good care of yourself. I have overcome cancer twice as well as sepsis. I just go with the flow. On sucky days I hang out in the bedroom or on the sofa. It is okay. My fabulous husband looks after me.
I so identify with this, Alison. My advice would be to forget the to-do list until you feel better. Your body is talking to you – give her what she needs today. We understand and will still be here when you feel better. Much love xx
Oh Alison, you are describing my life too. I also have Hashimoto’s and have come to accept that I only have so many spoons. When I have run out of spoons for the day then I’m just completely done in. I hate that.I hate not being able to think clearly. I spent five minutes the other day trying to remember the word “recital.” It’s so hard to make other people understand why I can’t do things I used to do without being wiped out.
Thank you for sharing. There are women I love that suffer from chronic fatigue from various issues. One of them shared the below with me and it’s now a regular point of reference for us – how many spoons are left? It’s a great communication tool for family.
I would so like to make hard things easy again for them. I work to be mindful of the limitations the disease processes put upon them, trying to support and maximize experiences. Every new article sharing someone else’s story helps me to be a little ‘more’ for these women I love. Thank you.
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Thank you for this, A!ison. My energy has been better since I started a grain free diet several weeks ago, but I am still struck with days -like today – when all I want to do is lay in bed with my eyes closed. Its so frustrating to not have the energy to do projects that excite me; that yesterday I could work on easily, but today, inexplicably, are out of reach. I’m exhausted, I’m achy, I wonder how long it will last, I worry if there is another illness hiding in my body; but with your article & the comments below, I feel less alone! Hang in there, everyone!