The blog of photographer and musician, Kim Ayres

Chronically Fu... er, Pissed Off

.
I went to see the blood specialist in Dumfries this afternoon.


What I was hoping to hear:

That I have a recognised condition, where no one can say, “Did you hear of that Olympic athlete who had CFS and just decided it wasn’t going to stop her and she won gold,” or “It might get better on its own, but it might not, and it might even be degenerative, we have no idea," or "Have you thought about Crystal Therapy?"

That I would be able to say, “See! See! I told you I was ill, that I wasn’t making it up”

That it would be something serious enough to be recognised, but not so serious it would be incurable, unmanageable, terminal or requiring painful or lifelong treatment.

That I would finally be able to get rid of the label, Chronic Fatigue Syndrome


What I actually heard:

I definitely have Haemochromatosis, which is going to require lifelong periodic blood-letting.

But at the moment it’s at a relatively low level and is highly unlikely to be the cause of my Fatigue.


So...

Now I have both Haemochromatosis and Chronic Fatigue Syndrome (and let’s not forget the B12 deficiency either, requiring lifelong periodic jabs, also not the cause of my CFS)





Poo.





I plan to spend the evening curled up on the couch feeling thoroughly miserable and sorry for myself.

And I don't want to hear about people in the world being worse off than me. It NEVER makes me feel better
.

24 comments

Carole said...

The fetal position works best. And if I were you, I'd boycott those doctors.

I just have to say bloodletting as a cure does not sound good.

Jessie said...

I agree with Carole, but throw a blanket over your head too and make your own little pity tent. It helps me every time... :(

PI said...

You also have my fond sympathy. My son who has just been, has had an recent eye operation with scars on his eyelid and he meekly allowed me to rest my hand on the scar because everybody knows Mummy always makes it better, So - I'm not your Mummy but I'm sending you a big warm hug.xox

Charlie said...

Feeling sorry for yourself is by far the most adult thing to do.

Dr Maroon said...

You think you've got it bad?
When I was 12 we were fishing in Mugdock loch for trout and this pike jumped out the water and bit the bark off a tree. The poor sod of a water bailiff dropped stone dead from a heart attack right beside us.
Blood Letting? Blood letting? Shome mishtake shurely? Which medical school did this bastard go to: Padua in 1452? No offence but was he British?

Dr Maroon said...

I wouldn't mind a hug Pat.

Z said...

Oh fu... er, piss.

Nevertheless, all these health problems don't help your general level of fitness. Once they are being treated and you have had time to recuperate, there's every chance that you will start to feel better.

Pat's hugs are best, but you have mine too.

Anonymous said...

Glad that they caught the haemo whatsit early! It can result in major liver trauma later on down the road, so YAY for simple treatments, not so yay for still having CF with no cause.

OM

Stella said...

Bummer Kim

savannah said...

wallow, sugar! i am a firm believer in getting crazy mad whining groaning deep in the pity pool at times like this! when you do uncurl and get off the sofa, you might feel better and if not, you had a bit of a rest anyway! xoxoxo ;)

Kim Ayres said...

Thank you all for your indulgence. I'm over the worst now. Nothing too much chocolate couldn't fix :)

Jupiter's Girl said...

What dr. Maroon wrote HAD to make you feel better, Kim, even for a moment, eh? He makes me laugh out loud. In public. Hours and physical distance from the pc.

Sorry about this latest bit of news. Your writing about it clearly expresses the frustration and disappointment that comes with your condition. I empathize with you and wish I had something helpful to say to fix the problem. I have lots of ideas, and I've seen many others here by well-wishers. Maybe doctors will learn something by you. You are a good teacher. And in my perceptions, I think you are way more productive than I am.

I wish you peace.

Mary Witzl said...

Oh, crap, Kim! (I'm biting back all my 'Yes, but...' stories JUST for you.)

Actually, I could use a hug too. I've been sitting here having my own pity party after yet another rejection. I'm up to my knees in books and clothes and junk and the husband is outside chewing the fat with the man who is supposed to repair our leaky roof but really tends to make a God-awful mess instead, and I've snuck five minutes on the computer that have turned into 20 and now I'd better get back to work or I'll get caught.

But you really do have my sympathy and chocolate works for me, too. (Of course it works! Too bad you only need one bar for the full dose.)

Kim Ayres said...

Jupiter's Girl - Dr Maroon always makes me feel better. That's why I let him get away with calling himself Doctor without questioning too closely

Mary - Hugs all round then (and sneaky chocolate bars)

Anonymous said...

Hi Kim,

I can so sympathize with your health problems. My husband has had CFS for 20 full years now, and has been totally bedridden most of that time. I don't know if you're able to work at all, or go anywhere or socialize at all, or drive, but if you're not completely and totally bedridden, and can still work a job, or still get out once in a while, or go out for dinner occasionally, then remember to count your blessings and be very thankful that you can at least get out and function. We just celebrated our 28th anniversary, and also my husband's birthday, but he was way too sick and weak to get up off of the couch and go anywhere or do anything at all for either one of them. He's doing really well if he can just push himself to go to his doctor's appointments (which the doctors haven't been able to help at all with the exception of treating some of the pain and depression and sleep problems that come with having a very very severe case of CFS and being totally disabled by it). By the way, he also has a severe case of fibromyalgia and myofacial syndrome which cause him to be in constant pain that never goes away, even though he's on Morphine and another narcotic pain reliever.

Lynne said...

Good luck, I feel badly that you are going through such a tough time with this.

Perhaps it would be cheerful to think of bloodletting as something to be done with leeches, then think of Demi Moore paying lots of money to get leeches to suck her blood to keep her looking young (she said so on David Letterman, I think). So, maybe you will get a "youth-giving treatment" and end up looking years younger than any of the rest of us.

Kim Ayres said...

Anon - you clearly didn't read the last sentence of my post ;)

Lynne - If I start looking like I'm in my 20s again, I'll let you know.In fact I'll proabbly post before and after pics

Pandora Woman said...

OK, had a weekend that would tire an athelete. SO I am late...........sorry about that.

But then what would you have me say? Holy heck and flippety flop.

I agree with Carole, fetal position works. Chocolate always works for me, bags of it.

BIG HUGS

Willow

ps: mind ya I never did mention how bad off I am............errrr...........never mind *grins*

Anonymous said...

I saw an infomercial the other day and thought of you, then I check your blog today and find this post...
First I don't normally watch infomercials...they are so annoying, but this one did catch my attention - that and I was on the computer and the remote was on the other side of the room and I really didn't feel like walking over to get it and no one else was home to call in and get it for me...
Anyway, the infomercial was for sublingual B12. I'm a huge fan of the B complex vitamins...though I rarely remember to actually take them. They had numerous doctors (paid I'm sure) telling anyone lazy enough not to change the channel how the sublingual B12 actually gets more B12 absorbed into the body than the pills and how it can "cure" numerous ailments - things that aren't really wrong just not right. After I thought, hmmm wonder if Kim has ever heard about this stuff, I then promptly turned to hmmm wonder if that actually works....wonder if that would help with my current lack of energy (current = most of my life! lol) problem.....
I'm not fool enough to actually order anything like that from an infomercial but I do plan to ask my Dr about on some future appointment when I'm going in for something else anyway. They also claimed you can not OD on B12 and that different people need different amounts to feel "normal." Fatigue was one thing they mentioned that it could help with.
If you've tried it and it didn't work, let me know please! If you haven't...well they claim it can't hurt...
I'm all for vitamins over drugs...

Mia

Kim Ayres said...

Pandora Woman - Hugs back :)

Mia - I was identified as having a b12 deficiency a little over 2 years ago. Since then I've been getting jabs every 3 months or so, which more than makes up for any lack in my system. However, it doesn't appear to be the cause of my Fatigue.

If you are b12 deficient, you need it checked by the doctor rather than just grabbing pills or supplements, as it can be a sign of pernicious anaemia (not sure of the spelling), which is a dodgy thing.

I appreciate you thinking of me :)

Anonymous said...

I've had all the blood work...I'm not deficient. I just feel better when I have more. Those few times when I've remembered to take the supliments for more than a few weeks I just feel better. I'm just horrid at remembering to take pills. Even antibiotics get forgotten after the initial feeling of death passes by.
So maybe you techinically have enough, but not enough for YOU.
Or maybe it's wishful thinking for such a simple not found answer...

Mia

Kim Ayres said...

Mia - the jabs give me more than I would ever have by taking supplements, but I appreciate your thoughts.

As for taking your pills, you need to tie it into a daily activity - so always with your first cup of coffee, or just before you clean your teeth; something like that makes it easier to remember :)

Ubergeek said...

Hey, that sucks. I hate to be a bearer of bad news, but you might want to start getting your kids checked for hemochromatosis as well, as it's hereditary. It's much more benign when caught early.

And as always, best of luck with managing. It sucks when you can't say "I have this", and instead are left drifting about without a label, knowing you're not faking, but always thinking that's what other people suspect.

If you've got good docs, they trust that you're ill, it's just that they don't always have the answers. I wish you the best.

Kim Ayres said...

I know I'll need to get the kids checked, but I was told it's not usually done until they're 18

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