Friday, August 11, 2017


Today’s post is a writing challenge. This is how it works: participating bloggers picked 4 – 6 words or short phrases for someone else to craft into a post. All words must be used at least once and all the posts will be unique as each writer has received their own set of words. That’s the challenge, here’s a fun twist; no one who’s participating knows who got their words and in what direction the writer will take them. Until now.

My words are:

Camp ~ Heat ~ Dust ~ Chance ~ Mountain ~ Shopping

They were submitted by:


I have a chronic illness.

I've not really talked much about it publicly except a few mentions on facebook here and there, but the last year and a half has been tough physically following the year before being pretty tough mentally. I didn't quite expect my 30s to be so full of change. We're supposed to be more or less settled and maintaining by mid-adulthood, yeah? But I suppose that's the thing about life--rarely is it ever predictable.

Chronic fatigue syndrome is a new lifetime partner of mine. There won't be a day when I'm without it, so living with it instead of in spite of it is a necessity. It started with a virus, something I mistook for a normal sinus infection. But I've had a year and a half of a constant fever, swollen glands, extreme joint and muscle pains and fatigue that words fail to describe. Some days I have to absolutely focus on breathing because I barely have the energy to do it.

What the fuck are you supposed to do when breathing is a chore?

I have yet to really figure out a rhythm. I overdo it some days, A LOT of days, and pay for it the next. I don't know how to admit I can't do something. It's never been in me to say "can't" when it comes to something I want done. I don't know how to redefine my parameters. I've always been the kind of person who had a million things going on each day rather than barely managing to dust and get the shopping done. Every activity, even basic shit like brushing my teeth, is a mountain to climb especially in the peak heat of the South Georgia summer. Mentally I know there are days when I should camp out on the couch or in bed. I know I need to take breaks. I know my energy level is limited in ways I don't even understand yet. But it's a constant battle not to succumb to depression from having to give up and let the cfs win more days than not.

Every day I wake up there's a chance my battery will already be at 5 or 10%. On my best days, it's at 50. I'm getting better at recognizing how good or bad it will be when I wake up--it's more the admitting I need a day to recuperate part that I struggle with especially since it's not easy to get people to understand that this is more than being tired. It's more than needing to rest. Rest doesn't help. It's a real and serious condition that I have enough trouble understanding myself. A little support would be nice and certainly goes a long way to helping me feel okay with the fact that this is my life now and forever.

Someone I absolutely adore with cfs herself sent me a spoon necklace recently. Spoon Theory (link here) is an attempt at explaining to others what it's like to have one of the extreme fatigue disorders, and it's one of the best explanations I have seen. Think of your energy levels in spoonfuls. A person without a fatigue disorder has an unlimited amount of spoons--a person without one can rest and recharge. A person with chronic fatigue syndrome, for example, may only wake up with 12 spoonfuls. Every activity uses up a spoon. Taking a shower, getting dressed for the day, making breakfast...each activity, even those that seem insignificant, takes a spoon from your total. How do you manage to do everything that needs done for the day? Every single action must be weighed in terms of importance, and anything outside of those 12 spoons for the day borrows from the next creating an endless cycle of depletion until a person barely has the energy to breathe.

Every life comes with battles and complications along with the good. I've faced my fair share of trials already and always managed to come out on top. I hope this newest battle won't be an exception to that norm. I may not always have the energy to complete everything I want to get done, but I make up for it in personal strength.

CFS won't be the thing that bests me.


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Part-time Working Hockey Mom


  1. I didn't know you suffer from cfs, so sorry to hear! I know "normal tired" and "very tired", but at least I get to recharge.
    What is there that can be done medically?
    Here's to not giving in and to using your spoonfulls wisely. Certainly don't spend them on housework!

    1. Not a lot actually. It's not really understood and has only recently been taking seriously as a medical diagnosis. It's more common in women but at least here women are often underdiagnosed because doctors simply dismiss their issues! It's sad. So I take supplements, do some strengthening exercises because aerobics is out, and just sort of take it day to day. With all the animals I have housework is a must and it's easier to maintain cleanliness than it is to do a major clean once a week or whatever, so I'm sort of getting a system down for that.

  2. I'm sorry you have to fight your way through a day. It just seems so unfair.

  3. I totally get the chronic illness. I have Anklosing Spondylisis - which is a type of autoimmune disease that attacks the large joints and the spine. It also impacts my vision on some days - and causes chronic fatigue and severe anxiety. There are some days, I just don't know how I will make it through. I'm glad you have a friend that understands you. That spoon necklace sounds like a lovely reminder gift.

    1. I'm thinking about getting the spoon image I included that says "Not Today." Sometimes I need the reminder and sometimes people I love do. It's so hard to get other people to understand what you're going through! I think that's one of the toughest parts.

  4. I have those spoons! I have something called Felty's Syndrome which is a rare form of RA. The fever and fatigue are the only f-ing I'm getting because there just isn't a spoon big enough for that. I'm just trying to be funny, but it is devastating. I was diagnosed in my 30's and I had a life I LOVED. I got paid EXCELLENT to drive around all day and listen to my stereo and deliver the mail. The next thing I know I'm bedridden for a year because of not having insurance to the point where I almost died. I ended up in an ER with blood transfusions being given to me over and over because I had bled out internally somehow. Anyway, I now don't drive, I live like I'm an freakin 80 year old because I have to take care of mom and some days I just want to lay on the bathroom floor all day. You just gotta keep searching for something that makes you happy even if you have to do it from the couch. Focus on that little bit of happy. I won't say I'll pray for you because I don't believe in God, but I will keep you in my thoughts and if I pick up an extra spoon I send it your way! Oh I wanted to tell you from your comment on mine last week. My daughter has that PCOS. That is a BITCH plus this on top. I'm sure it's all connected some how probably all leading back to a lb of Oscar Meyer Bologna. Lol

    1. It's SO hard going from living a full life to whatever this is... I hate feeling like I can't and it is literally driving me crazy. My anxiety is through the roof trying to figure out how to deal with all this, but I'm learning. It's a process. I used to be the breadwinner in all my relationships and I've always been able to take care of myself. If I set my mind on doing something, I did it even if I had to teach myself how first. Depending on other people to help me out because I can't work full time anymore and struggle with the day to day is a pain in the fucking ass