The blog of photographer and musician, Kim Ayres

Lack

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The Chronic Fatigue Syndrome I live with isn’t crippling in the sense of, say, not being able to move about, dress myself or have friends round to visit. I can do these things fairly easily.

And I can do more: I can go out and see friends, I can drive places, and I can wander up to the shops, so long as they’re not too far and there’s not too much to carry back. And if I gauge the energy flows right, and tip the balance with a well-timed cup of real coffee, I can even go out and do photo sessions with friends and clients.

And because I have learned not to rush, not to overdo things, and become more skilled at finding ways to conserve my energy, there are many days when anyone who didn’t know, would never suspect there was anything wrong with me at all.

But where it really makes itself felt is in the complete lack of reserves.

Get the timings wrong, overdo things, push myself a bit too far because I forgot – and I run out of energy very quickly. It feels like someone’s pulled out the stopper and I can feel myself deflating. Ever lain on an inflated air mattress and pulled out the plug? It’s not a dissimilar sensation.

And if I keep going because there’s no choice, I reach the point of utter exhaustion with terrifying speed.

At that point it’s rather like being extremely drunk, but without any of the feel-good factor: lack of coordination, dizziness and a complete inability to focus my thoughts.

It’s not just physical activity which creates this state though, but emotional intensity too.

And right now the family is going through an intensely emotional time, from which there can be no happy endings.

And the guilt I feel for not being able to be as strong for everyone as I need to be, and they need me to be, makes it a thousand times worse.
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22 comments

PI said...

Just dropped in and surprised you have a new post. Not on my reading list yet.
I'm sorry you have a dilemma and will dare to give advice because I know you know it comes from affection.
I think you have to rise out of your box mentally, and look down on the problem as if you are an interested but uninvolved spectator.
Does it make sense to drive yourself beyond your limitations to do what you think is expected of you? Or does it make more sense to conserve your energy and build up your strength to keep on an even keel so that you yourself are not an even bigger problem. I have great faith in your common sense and send you loving wishes and apologies for having the arrogance to give advice.

Rachel Fox said...

Ah yes, guilt. If only there were phds in it. We would all be so well qualified...
And it's such a pointless feeling. It does no good for anyone - especially the feeler. Banish it! (Easier typed than done, I know).
x

Z said...

I'm so sorry about the family matter and I hope that together you'll cope as best you can.

Kate said...

Oh Kim, I'm sorry to hear that :-( Life's a git sometimes isn't it. I'd tell you to try not to feel guilty, but I know you will anyway, so just know we're here if you need us!

Jimmy Bastard said...

Kim, your family is your strength my friend. Emotional times can be lessened just by being with each other in the same room.

St Jude said...

I understand how you feel. I developed post viral fatigue syndrome, (PVFS), after my bout of flu last Christmas. I am still not able to work full weeks, or full days on some occasions. My ability to deal with emototional crisis is severely hampered it's not just the fatigue that does it, it's the fact that my brain won't work and I struggle to place my thoughts into context or order them.

I know you won't stop feeling guilty, but try to be as kind to yourself as you can as the guilt will sap you just as much as anything else. Take care I hope everything works out alright.

Khanh Ha said...

Find a moment to meditate when you're at a low ebb. A calm mind even when you're tired would likely bring good things about.

hope said...

I'm sorry life's taking a swipe at you and yours currently. The best I can do is wish you well and hope things return to the way you like them soon.

LegalMist said...

I'm so sorry to hear things are stressful... I wish you all the best.

Kim Ayres said...

Pat - in other words, stop wallowing in self pity and accept the limits of what you can't do. You're absolutely right, and you say it with such tact :)

Rachel - Doh! I should have gone for a degree in guilt instead of philosophy - it would have definitely come much easier :)

Z - thank you

Kate - Yup, life can be a stinking pile of shit sometimes. But not always. But when you're above your eyebrows in it, it's easy to forget good times happen too

Jimmy - unfortunately, as tends to be the way in these instances, at the time we need each other the most, the circumstances force Maggie & I to be in separate places for the duration.

St Jude - although I wouldn't wish it on anyone, it's sometimes a relief to know there are other people who really do know and understand it's not Lazy Bastard Syndrome.

Why is it that those who would most benefit from a large does of guilt never seem to experience it, while those for whom it does no good at all, get it in such large doses?

Khanh Ha - of course one of the bastard things about meditation is it's much easier to find a calm mind when you're not screaming :)

Hope - things won't return, they just move on in new permutations, but I appreciate the thought

LegalMist - thank you

Stinkypaw said...

SOrry to read this, guilt has this way of creeping in on us, doesn't it? You do what you can and want, and your family should understand, you are there and that matters. Don't waste your energy on feeling guilty, you seem wiser than that (seem being the key word here!);-)

debra said...

Guilt is the gift that keeps giving, isn't it....It's hard to just be where we are, instead of feeling guilty that we aren't somewhere else.

Reader said...

Don't go down that road of what you "ought" be for your family. Your strength and guiding presence is more than physical ability. I hope this helps, but I believe that the effects of our own personal experiences are a means to teach the ones who love us valuable lessons. If your particular malady requires you to slow down - then maybe, in a time of family strife - that's just what is called for thoughtful reflection. Be well.

Ashley Ladd said...

Hugs.

Sometimes I wonder if I suffer from that or it's only my low thyroid and having to overdo things making me so tired. I keep forgetting to ask my doctor. But sometimes after the day job, if it's a rare night I don't have to take my kids to a ball game or somewhere, I lay down right after work and sleep until the next morning. There've been periods of weeks or a couple months where I get very little or no writing done.

Kim Ayres said...

Thanks all for the supportive comments, but this post was just me yelling at the universe to get it out my system. I moved on to the next post once I realised I was getting the sympathy comments and felt a bit embarrassed by it all

Coralee said...

Kim, I have some similiar issues and I understand how defeated you can feel some days. It is "crippling" emotionally.

My emotional meter ranges from depression to grateful. I spend days "beating" myself up and reducing my self-esteem as if I was a battered child.

Then there are the days that my "arrogance" takes over and I push myself to the brink. It's hard for family and friends to understand.

Often there are those sympathetic looks from those around me that evoke my strength - I am just fine, fabulous. I am not.

Hence, I blog to provide some structure to my day and to clear my mind - and then I pick myself up and move on. ..

We survive. ..and find our "place on the porch".

You are gifted. . .what you can not do physically...you do intellectually, with sensitivity and insight. Good luck to you.

Stephiee said...

I can totally get you with this fatigue, im currently suffereing with it myself with having glandular fever real bad, and from goin about my normal day to click of finger getting ill and a month along the line learning how to use my eneergy wisely is so frustrating,upsetting and hard emotionally its hard to not hate yourself for it! im so used to doing things and feel like ive kinda lost my life a little, im just 19 and due to start my second year at uni studying illustration and have no idea how i am going to cope with it ...except to learn how to preserve legit energy...

Kim Ayres said...

One of the biggest things I've had to learn is not to put my life on hold until I get better. Because I might never get better. Therefore, I just need to find ways to move forward in the direction I want to go, even if it is more slowly :)

Stephiee said...

yeaaah thats the best way forward with it , just got to grasp it eventually!

Poppy Fields said...

Gaining sympathy was clearly not your aim from this post and I'm not asking for sympathy now. However I think you put into words how I feel about CFS, the total frustration it causes and the way that you wish you could do so much more. I'm inspired however by the little I've read of your blog, the fact that you have your photography and the determination to not let CFS control who you are. It's given me the assurance that, despite the restrictions I will face from low energy levels, I can meet the challenge of university with courage.

Kim Ayres said...

Poppy Fields - we can't always control what happens to us, but not feeling in control is one of the most stressful things and leads to loss of self esteem, loss of motivation and Depression.

However, we can learn how to look for areas of our lives we can control and then build on them.

I wish you every success with university :)

Hindsfeet said...

I know this sounds horribly flippant, but you might try a low-carb diet (20 carbs a day) adding in a daily supplemnent of Barleans Greens and sublingual B12 which is specific and SUPERB for boosting energy(taking B12 any other way than sublingually is useless, the beneficial elements are destroyed in the stomach)

...of course, there's always the "incredibly hard drugs option", but, ya know, in this economy, a little pricey...(I kid! I kid everyone! "Just Say No" and all that!!) ; )

wishing you good health, friend.

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