The blog of photographer and musician, Kim Ayres


Did you ever have one of those days, usually towards the end of the week, where you really felt like you could have done with a few extra hours sleep and it was all just catching up on you a bit?

It was a struggle to get out of bed and you felt slow all morning. For an hour or so after a coffee you felt kind of normal, but when it wore off you just felt a bit crap. Shortly after lunch and you could barely keep your eyes open, and if doing something repetitive or watching a screen you were guaranteed to doze off. Mid afternoon you’d have a strong coffee to try and kick-start yourself again but your heart wasn’t in anything you were trying to do. Desperate to get home and flake out in front of the TV, you didn’t really achieved anything of use all the day so just had to write it off. But you knew that if you could just get a couple of good nights’ sleep, next week would be far more productive.

Sound familiar? Of course it does; we all have days like this.

Now imagine everyday felt like that Friday afternoon – never quite able to get on top of anything; always feeling that if you just weren’t quite as tired you could take on the world again, but right now all you really want is a quick nap.

That’s pretty much how I feel all the time.

On days when I’m in a mood to beat myself up about things, it all just seems a bit pathetic. I’m not housebound, I can get out of my bed in the morning (however reluctantly) and I’m not in pain. So how can I be ill? Perhaps all I need is a good night’s sleep and everything will be fine tomorrow.

But it’s because I’m not in pain or unable to get out of bed, that I went for such a long time without realising anything was wrong. I can’t even tell you how long because I’d normalised it. Eventually, however, it started to seep in that every time tomorrow came, I’d feel the same way.

Finally it took my wife to say that she thought something was seriously awry to make me go to the doctor about it 12 months ago. I wasn’t yet 40, I’d sold my business and had a far less stressful life, I’d lost weight through much healthier eating habits, the future was brighter than it had ever been, so I shouldn’t still be complaining of always feeling tired. It was then the B12 deficiency was discovered.

When I saw the doctor again last week he agreed to up the B12 injections to every month rather than the 3-month cycle it’s been for the past year, although neither of us believes it is solely a B12 problem. It makes a slight difference for a few weeks after the jab, but not a greatly significant one.

For the first time since I started seeing a doctor about the tiredness, the words ME and Chronic Fatigue Syndrome have raised their heads. However, one of the key features of ME is severe muscle or joint aches and pains, which I don’t suffer from. As for CFS the problem is it appears to be a catch all term for “we’ve done the tests for everything else and it wasn’t that, so this is all that’s left”. Consequently the literature on potential cures or management of the condition is vague at best.

If the most I can hope for in terms of a diagnosis is a made up name for an unknown condition, then I figure I can claim my own title for the way I feel. So next time anyone asks what’s wrong I’ll tell them it’s CFAS - Chronic Friday Afternoon Syndrome – which is probably about the most accurate description I can find.


Z said...

"Over the past 2 years I have changed my car, changed my career, moved to a different area, lost 100 pounds in weight"

That's quite a lot for a mind and body to absorb. Is it possible, do you think, that you have not been able to give yourself time to relax and adjust to all the changes? Do you know, by the way, the underlying reason why you have a vitamin B12 deficiency?

It may be that you need to spare yourself as much as you can - try to schedule in a daytime nap (get used to 10-20 minutes and it's really refreshing), don't arrange a heavy meeting after a busy day - will I sound corny if I say 'cherish yourself'? After a while, you will recover, if you listen to your body and act on the information. Really, I'm sure of it.

Mary Witzl said...

Have you ever tried a food allergy test? The test is not cheap -- £150 or so -- but I have two friends who have had this done and based on the difference it has made in their health and well-being, I would certainly give it a go myself if I had your symptoms.

One of my friends used to say that she had FLC, as in 'feel like crap.' After having her food allergies tested and avoiding the foods she was told to avoid, she claims that she doesn't feel like that anymore.

Julie said...

It sounds so very frustrating, but I really like the sound of CFAS. I think I'm suffering from it this week. I've been getting up to take my husband to work, and then going back to sleep for a couple hours.

It's times like these that I'm really happy to work from home.

ADW said...

I wonder if CFAS will get you excused from work??? I'll have to try it out.

I hope that you find out what it is that is ailing you soon. Stay strong pirate.

savannah said...

yikes, sugar! as much as i like the concept of CFAS...i can't imagine it being a constant...glad you're seeing a doctor...take heed of what z said've done a lot and maybe your body really is just trying to catch up...*hugs* ...take care, dear friend!

Carole said...

I like the fact that you name your own disease, but it doesn't make it any less a real disease. Like everyone else I have my own diagnosis of your CFAS, but I'm not a doctor, nor did I stay in a Holiday Inn Express, so it would be useless for me to throw in my two cents worth.

Well, yes Kim, if you are going to beg me I will tell you. I think you have TMB.

To the lay person, this is "Too Much Brain" If I could put thoughts together, like your brain does at a rate of about 364 mph. my body would also be tired. You have so much going on all the time in your Medulla oblongata. The normal person thinks...but you think on every side of every issue. You can look at one thing from 40 different angles and come up with a coherent way to explain it. I don't understand why you don't understand that you do in one day, what it takes the average person a year to think through. Of course you are tired, exhausted, without energy. If you could get your mind to slow down, I believe some physical energy would return, but that isn't the best trade off in the world. They give kids with ADD or ADHD Ritalin or other drugs to slow their activity level down, so they can put thoughts together. Do you not think it can work the opposite? I have read many of your posts and I know of what I speak.

Still it would be hard to explain the symptoms to the doctor. "You see doc, I think all the time, I can't stop thinking. I don't just have one or two thoughts, I have a thousand. And that leads me to more thoughts, more ways of trying to look at the whys of the world. I am besot with the questions of how one should live; what sorts of things exist and what are their essential natures; what counts as genuine knowledge; and what are the correct principles of reasoning. Could you help me not think?"

The doctor would then reply, "Huh?"

Kuin said...

Wow, I feel your pain...I like the new catchy title you have given it. What happens if you are able to take a 20 min nap..not a sleep but just rest your eyes during the day when you feel like that for about 20 min..some say that it really really helps...?

Phil said...

Kim, I would like to chime in with the rest in saying that I hope that you can find the cure for your newly named ailment. Though I don't have alot of faith in western medicine. It all seems like a process of elimination rather than the ability to say "Aha! We have found the problem!" Off subject, you mention Tai Chi in your profile. How long have you studied? And have you talked to your instructor about your CFAS? Maybe a little not-so-conventional direction could be useful? Just my 2-cents.


Fat Lazy Guy said...

Being a male, it's within my stereotype to try to fix you right now. I'm fighting it, but I really want to ask if you've been to a sleep clinic or something. I realise obesity increases the risk for sleep apnea, but isn't it possible to get it even when you're not obese?

Sorry, I gave in. I'm just perpetuating the stereotype. Sorry.

If I had your condition, I'd call it SFATIDNTBQAEAILTB. That's So F***ing Awesome That I Don't Need To Be Quite As Energetic As I'd Like To Be

Sayre said...

I was going to say what Fat Lazy Guy did. My dad had/has sleep apnea. Obesity raises the risk, but you don't have to be fat to have it. But he was acting and sounding like you do - only he was so oxygen deprived that he would fall asleep in the middle of a sentence or while driving. When the doctor looked at his test results, he was put on a sleep tank immediately, as the risk of his not waking up anymore was extremely high.

Please check this out if you haven't already... it could literally save your life.

Mary Witzl said...

Okay -- I can't bear it; I've just read the last two comments about sleep apnea, and I have to add my own yet again.

My husband had sleep apnea for years and suffered many of the symptoms you describe, (in addition to a few others that you don't have, lucky you). The area we live in is one of the few in the U.K. where sleep apnea machines are offered for free to sufferers, and if you are in fact suffering from sleep apnea, they can make a tremendous difference in your well being. So if you happen to be someone who snores, Kim, I would get on the phone right now and ask to speak to Sister Murphy at the D & G Infirmary. At the very least you can have that ruled out...

I will be fascinated to see how many pieces of advice you end up with in a few days' time, Kim!

fatmammycat said...

Kim! KIM! Quick, I"ve got something I want you to see, you were wrong Kim, I'm wrong too, we're just wrong wrong wrong about diets and exercise. Wait 'til you see this!

Eryl Shields said...

Oh Kimie! If I were in CD right now I'd come round and give you a hug. It would make me feel like I was doing something even if it might alarm you. I'd also attempt to force feed you chicken soup. In fact I have a freezer full of old bone so I might make some and bring it round. The medical profession seems to be failing you, perhaps the old wives can do a better job.

Kim Ayres said...

What a response.

I didn't write this in the hope that someone would be able to offer a solution - although I appreciate that need we have as people to try and suggest one.

Basically what I was writing was a desciption of how I feel. It gets difficult at times for others, even myself, to understand what's going on. I'm not in pain and I can move about, so why do I think anything's wrong? This was my attempt to relate my experience of the past year, quite probably much longer

Z - I already have to have a nap pretty much every afternoon; no one has a clue about the underlying reason for the B12 deficiency; and I do look after myself.

But I'm certain it's not to do with the changes, because the changes were ones for the better and despite the implications of my About Me statement, they didn't happen overnight.

Mary - I think it's highly unlikely to be a food alergy thing. When we changed our eating habits we cut out the vast majority of processed foods, which also includedbig reductions in the amount of wheat and dairy we consumed, which are usually the big culprits

Julie - Give something a catchy name and it becomes much easier to use

ADW - perhaps we should set up a CFAS website that looks and sounds official, then you can refer to it when you're at work to get a few hours off.

Savannah - that's the thing, it's fine feeling that way at the end of a long week, but it's crap feeling that way every day

Carole - I had to look up Medulla oblongata :)

As for TMB, I'm afraid I'm not convinced, otherwise there would be no scientists, philosophers, teachers or thinkers over the age of 40 because they would all have burnt themselves out.

Kuin - I already have a nap almost every afternoon

Phil - I don't do the Tai Chi as much as I should, but it still plays a part in my life. I studied under a great teacher for a few years, but then he moved and I moved and I've not had an instructor for over 3 years now. I continue to do the form on my own a couple of times a week

FLG - I like the sound of SFATIDNTBQAEAILTB. Do I need a New Zealand accent to make it sound at its best?

Sayre & Mary - it's not sleep apnea - Maggie would have noticed for sure. When we were several stone heavier Maggie was suffering from it - or rather I was suffering from her having it, getting worried every time she stopped breathing for 30 seconds or more. It disappeared once we lost a certain amount of weight.

Eryl - A hug and a bowl of chicken soup never goes amiss. Unfortunately, while it might help when you're low for a couple of days, I don't think it works over a couple of years.

However, you do need to find your way over to CD, or we should at least be meeting up in Dumfries soon, to philosphise on all this Narrative stuff.

Kim Ayres said...

FMC - I find myself thinking once again, I wonder if Eve was a Size Zero?

Andraste said...

Sounds like everyone has a theory so I won't add to the throng of advice and suggestions...

I lied. Here's another thing to think about - much research these days into vitamin D and how it's becoming clear that it is THE ONE VITAMIN everyone needs much more of than they actually get. I'm taking my brother's advice these days, and it seems to be working: Take at least 1,000 IU's of good, fish derived vitamin D every day at noon, and get 20 minutes of sun on your face and arms any day the weather permits, preferably between 10am and 2pm. Eat lots of berries that have calcium and magnesium, and antioxidants.

At the very least, look up some of the latest in medical journals about vitamin D - and see what you think.

That, along with the B12

PI said...

The first thing that would occur to me would be anaemia but I expect you have had a blood count. Are you getting the right sort of sleep? You know what they say about an hour before midnight being worth two after. What Z says makes sense. Also nutritionists can be very helpful. Both of you have your heads screwed on so I'm sure it will be sorted and am thankful nothing ominous is to blame.

Gyrobo said...

Maybe you should try touching a Van de Graaff generator.

If that doesn't restore your vigor and moxie, I don't know what will.

Kanani said...

I have NO advice. None, whatsoever!

Sorry you're feeling poorly.

Shebah said...

Andraste suggested sunshine. Maybe you have year round S.A.D. Move South, Kim, away from the dismal Scottish rain. Did your depression co-incide with your move to Scotland?

Shebah said...

The symptoms of SAD
Sleep problems: Usually desire to oversleep and difficulty staying awake but, in some cases, disturbed sleep and early morning wakening
Lethargy: Feeling of fatigue and inability to carry out normal routine
Overeating: Craving for carbohydrates and sweet foods, usually resulting in weight gain
Depression: Feelings of misery, guilt and loss of self-esteem, sometimes hopelessness and despair, sometimes apathy and loss of feelings
Social problems: Irritability and desire to avoid social contact
Anxiety: Tension and inability to tolerate stress
Loss of libido Decreased interest in sex and physical contact
Mood changes In some sufferers, extremes of mood and short periods of hypomania (overactivity) in spring and autumn.
Most sufferers show signs of a weakened immune, system during the Winter, and are more vulnerable to infections and other illnesses.
It occurs throughout the northern and southern hemispheres but is extremely rare in those living within 30 degrees of the Equator, where daylight hours are long, constant and extremely bright.

Sam, Problem-Child-Bride said...

My first thought was what Pat said, anaemia, but I reckon the doctor would have picked up on that right away.

Your condition sounds more serious but what has always made a difference to my energy levels is a brisk 20 minute walk every morning. It gets my blood flowing and peps me up for the whole day better than coffee ever can. Not only does it make you feel immediately better, but the more you do it the higher your energy will climb generally.

If I can't get out of the house, I run up and down the stairs 10 times as fast as I can.

Do you take a daily B12 supplement along with your monthly shots? It's water soluble so you can take as much as you want with fear of overdose; you just pee any excess out.

Andraste's right on the vitamin D too - apparantly people in Northern climes who don't eat a lot of oily fish are particularly susceptible to deficiency. If you take a multivitamin you need to watch the numbers if you take an additional Vitamin D supplement because it is fat-soluble, it won't pee out and can accumulate to toxicity in your system. That would take a hell of a lot of Vitamin D though; I only mention it because there was a thing on the news here about the number of accidental overdoses of things and vitamins figured among the culprits.

It must be frustrating not knowing what's wrong or how to fix it. I'm sorry you're having to deal with such crummy tiredness all the time. Here's hoping you find some relief soon.

Kim Ayres said...

Virtually everything that's been suggested has been looked into over the past 12 months, apart from the Van de Graff Generator, which does sound like fun.

But what I really do appreciate is the concern shown by everyone.

I should have realised it's nearly impossible not to try and suggest some kind of solution when faced with a post like this, but I wasn't looking for any. All I was really doing was trying to write about what my day to day experience is like.

I'll keep nagging my doctor and keep looking for answers and if I make any progress you can be assured I'll post about it here.

In the meantime, thank you for your thoughts and concerns. I feel quite touched.

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