The blog of photographer and musician, Kim Ayres

That sinking feeling...

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When I first went to the doctor complaining of feeling excessively tired, 4½ years ago, initial tests revealed a B12 deficiency. All it would take would be a series of injections to get me back to normal then 3-monthly jabs for the rest of my life to ensure it wouldn’t happen again.

I wasn’t happy at the idea I would have to have these injections forever, but I was looking forward to having my energy back.

A year later nothing had changed. I was still easily exhausted after comparatively little exertion. After a series of tests failed to discover any reason for this I was given the label CFS – Chronic Fatigue Syndrome.

But this brought no comfort – all it really meant was I’d been given a label meaning “We accept you get fatigued easily but don’t know why.”

I was told some people get better, and some don’t. But there are things you can do, like graded exercise and cognitive behaviour therapy, which, while they won’t cure you, should help you to cope better.

I found this difficult to accept and insisted on seeing some kind of specialist. After several more months I saw one who thought it was probably just Depression. When being on anti-depressants made no difference to my fatigue he just shrugged his shoulders and said there was nothing more he could think of.

Still, I refused to accept the idea that no one knew what was wrong with me or could come up with any kind of solution. When something was spotted in a blood test that lead to the discovery I have haemochromatosis, I thought this could be it, but it turned out to just be a coincidental condition.

I pushed to have some kind of sleep study done, but after several months to get the appointment, 8 months more to get the results and 10 additional months to try out a CPAP machine for sleep apnoea, it was concluded that probably wasn’t the problem either.

Earlier this year I saw a different doctor and went through the standard blood tests again in case anything was missed first time round but the results were the same – apparently I’m perfectly healthy and they have no idea why I get so tired.

I even went through extreme diet changes for several months to rule out food intolerances, which made no difference whatsoever.

The CFS has not gone away on its own or with the help of the medical establishment. Finally, nearly 5 years later, I’m coming to the sinking conclusion that it’s not going to. All along, I've been clinging to the hope that this condition will pass sooner or later. But now I have to face the fact I’m highly unlikely to ever return to having the energy levels that would allow me to live in the way most other people do.

Maybe I need to let go and grieve for the loss of the life I thought I was going to have, and only once I’ve been through that process will I be able to properly move on with the life I actually have.
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29 comments

Mimi and Tilly said...

I can completely empathise with what you are experiencing. I don't have any platitudes, or quips, or pithy comments. I am going through a grieving process for the life I thought I was going to have and the person I used to be. At the moment I feel heart broken. I was diagnosed with CFS/ME at the beginning of November 2003. Seven years on I am struggling to come to terms with the fact that I am still ill and my life has changed beyond all recognition. Ironically, this grieving process was triggered by my creative journey over the past year. Going inward, looking within... I've stopped writing on my blog for a while, while I go through this grief. I'm hoping I will be out the other side soon, and that I will feel like blogging again very soon. You are in my thoughts. With compassion, Emma x

Carole said...

So stinking aggravating. I am sorry.

angryparsnip said...

How strange, weird or karma, today I was sitting here and saying the exact same words.
Morning the life I thought I was going to have and coming to grips with living the life I have.
No word of wisdom from me other than somedays are better than others.

cheers, parsnip

The Unbearable Banishment said...

I'm sorry to hear this. Can you not learn to live with what you can't rise above AND continue to find an answer? No more testing, is it?

debra said...

(o) sigh

savannah said...

(((kim)))


i hope this does for you what it does for me when you leave them. xoxoxox

Charlene said...

What a bummer. We have grown to expect a solution to every problem. Sometimes there are no solutions.

Hindsfeet said...

I'm always struck by the irony that such an oasis as yourself can feel so depleted......very fuzzy math indeed....my heart breaks for you as I can relate to feeling like a starving bread basket.....

my dear my dear, may we both have Life to the full once again, one fine day........

bhán said...

I feel for you, it's dispiriting when no one is helping you work out what is wrong (especially while trying to deal with massive fatigue). After 7 years of the same I had an allergy panel (dozens of allergens stuck on my back for several days) and found I was allergic to a common chemical (natural) that is found in so many foods here in the USA that it was impossible to figure out from an elimination diet (sometimes it's even in honey, which is often imported from Asia and may have this added to enhance the flavour).
A doctor I was talking to the other day said allergies to food are common causes of migraine and fatigue and he thought many more people should be tested.
All the best,
..Siobhán

Pat said...

I really admire the fortitude you have shown in trying to get to grips with this illness. That alone must have depleted your energy and spirits. I wish I had some magic remedy but all I have is what
Savannah also has for you. In bucket loads.

Eryl said...

I admire you immensely for exploring every possibility and your insistence that this can't be it. So many people seem to give up at the first sign of an obstacle, almost as if it's a great excuse to do nothing. Perhaps you're right though, after five years it may well be time to accept and see where that leads you. It's not like you haven't achieved anything at all during this time, so with acceptance and mourning who knows what you will achieve in the future? Not that that makes it any less shit.

Perhaps you should build an effigy of your old life and set it, burning, out to sea.

Freakazojd said...

I'm with Eryl in that I admire you so much for being so pro-active with your health. Physical fatigue aside, you must be so internally tired from running in search of an answer for so long. I don't really have anything else to say, but for whatever it's worth, I'm sending you big "mental" hugs. (((<3)))

V said...

Big virtual hugs x

hope said...

Nothing brilliant to add. Sometimes it helps just knowing people actually listen and care.

I care. Add another hug to the pile.

Kiwi said...

Big hugs for you!

Litzi said...

Hi Kim,
It’s simplistic to state I can feel your angst regarding the Chronic Fatigue Syndrome that you’ve been plagued with for 4½ years. I’ve been afflicted with arthritis in my feet and legs for the past 18 months…have experimented with numerous OTC and prescription drugs, none of which have alleviated the persistent aching. Several of the remedies have been worse than the actual disease. I’ve come to the realization that until some miracle cure comes along, this is going to be my life…which is a bitter pill to swallow. I can empathize with how you’re feeling…

(((stay strong)))

Rachel Fox said...

Medicine can do some great things but it can also be pretty useless still (as your case shows). Some doctors rely on anti-depressants for almost everything I think (shrugged his shoulders...really?!).

Wishing you endless strength and courage to keep going...whatever your pace. And can I just say that from your other posts it's clear that you are being a great Dad... and some people have all the energy in the world but don't manage that.

x

allencapoferri said...

I'm sorry Kim. I could try to imagine but I'm certain really couldn't understand what you could be going through. I can understand in the sense that I was very close to someone who was ill. I now understand medical science is limited in what it does and it's very much the human spirit that endures and conquers.

Fay's Too said...

Kim,
I know it doesn't help a drop, but I understand. I'm really tired of being tired and missing so much.

starrlife said...

Hugs and understanding from here.Radical acceptance can be a powerful thing and you have that capacity. It is not passive, it is liberating.

A Daft Scots Lass said...

Gosh, how frustrating...I hope you get to the bottom of your fatigue.

The Pollinatrix said...

I don't know how open you are to alternative therapies, but I recently interviewed a woman for my newspaper column and found myself convinced there is something to what she does, which is about adjusting brain waves to deal with a wide variety of issues.

Here's the link to the main website: http://www.brainstatetech.com/. I looked around, and they do have one practitioner in the UK, on the Isle of Wight.

And here's the link to the article I wrote: http://www.taosnews.com/articles/2010/10/19/business/doc4cb767e759e97828858985.txt

Kim Ayres said...

Emma - I'm glad you don't have any platitudes or pithy comments :) I also want to thank you for all the insights and support you've given me off-blog - it has been very useful and greatly appreciated. I hope it's not too long before you pass this stage of your journey and I look forward to you blogging again :)

Carole - thanks for your thoughts

Parsnip - I guess its a point we all have to reach sooner or later

UB - I will continue to look, but I need to change from thinking I will find a cure to "if I find a cure then that's a bonus"

Debra - :)

Savannah - hugs are ALWAYS appreciated - thank you :)

Charlene - there are always solutions, just not always solutions we like...

Hindsfeet - one of the things about blogging, is I can only write when my energy is above a certain level - therefore, you only see me (or read me) when I'm above that level. But if you saw me all day you'd know that I'm not above that level very much, so it distorts the image of what I appear capable of.

Bhán - I might see if I can push the doctor for an alergy thing. I've already been checked for celiac (negative) and according to blood tests, my system doesn't appear to be in any state of fight, so it's not something I've been offered.

Pat - your warmth and support is always appreciated :)

Eryl - I like that idea a lot and will give it consideration :)

Kim Ayres said...

Freakazojd - good days and bad days. Sometimes I'm determined to get to the bottom of it and others I collapse in a depressive stupor. Thanks for the hugs :)

V - thank you :)

Hope - thank you :)

Kiwi - thank you :)

Litzi - I am fortunate that I don't have physical pain to contend with. My thoughts are with you.

Rachel - thank you :)

Allen - there are a lot of things we can't really get our heads around until we have direct experience of it - try explaining what it's like to be a dad to someone who isn't, for example :)

Fay - tired of being tired is a phrase that sums it up well

Starrlife - I'm only on the edge of acceptance now, but I can see it's the way I'm heading

Gillian - thank you

Pollinatrix - I have to admit, I tend to be in a state of ready scepticism with alternative therapies. I am open to debate and persuasion, but I was profoundly influenced by a saying I heard once: Q. What do you call alternative medicine that has been proved to work? A. Medicine

Jayne Martin said...

It seems to me like you've fought the good fight. You've left no stone unturned. You've done what you can do. And it sucks. It completely freakin' sucks. I don't know that acceptance is all that bad of a choice at this point. It surely takes just a crap load of energy to be angry and resistant all the time, and depression is exhausting on top of that. It would be ironic indeed if when you let go of the fight, you found yourself with more of that energy you've been seeking.

I'm sorry such a raw deal happened to such a nice person. Hugs...

emma said...

I don't envy your position. I have read a fair amount concerning the acceptance of disability (the usual suspects of denial, adjustment, acceptance etc), and if CFS is disabling to you then it is a disability.

But when the aetiology is completely unknown, and fatigue is hard to define and is difficult to measure (note - so is pain, certainly doesn't mean that it doesn't exist), may be that makes it harder to "accept" than something for which there is more medical knowledge? I don't know, just kind of rambling out loud.

One thing I see is that acceptance does not mean giving up or not doing anything to improve or to try to improve the circumstances. When I read this
"Sometimes I'm determined to get to the bottom of it and others I collapse in a depressive stupor", it rang a familiar bell and to me it seems that acceptance is no one final state of being, but a fluctuating, but fairly normal state of being:)

I hope this makes some kind of sense? I often find my comments on blogs don't make sense.

Litzi said...

Hi Kim,
This article from Huffington Post might be of interest to you. Chronic Fatigue Symptoms Could Indicate “Functional Weakness” Or not!

Sausage Fingers said...

Have you had your thyroid checked? I had similar symptoms back in my late teens only to be diagnosed with hypothyroidism. 20 plus years later I feel great. Good luck.
Sausage...

Kim Ayres said...

Jayne - thanks :)

Emma - don't worry, it makes sense :)

Litzi - not sure about that...

Sausage Fingers - thyroids been checked a few times - it was one of the first things they looked at.

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