Thursday, March 04, 2010

Win some; lose some: you’re a lost cause

.
Perhaps she was slightly more tactful than that, but the meaning in what the doctor said this morning was essentially the same.

I’ve had all the usual array of tests (again) and everything is coming back as negative (again).

We have people in here all the time suffering from varying degrees of tiredness, and in most cases we’re able to identify what’s wrong and help them. But every now and then…

Every now and then they just have to shrug their shoulders and say we don’t know what’s wrong and we don’t know what else to do, so you’ll just have to live with it*. Now excuse me I have more patients to see.

The sense of being written off and abandoned is somewhat overwhelming today.

I’m 43, not 83.

I shouldn’t have to feel it’s ok to go for a walk in the park so long as there’s a bench for me to sit on.

I shouldn’t have to feel the best of my life is now behind me.

I shouldn’t have to feel I’m treading water until I die.


Phuq**




*For those who want an insight into what CFS feels like to live with, click here
**Don't mind me, I'll be fine tomorrow. Probably.

.

35 comments:

savannah said...

(((hugs)))) xoxox

Carole said...

Very unfortunate.

Danielle said...

My mother has CFS ... sometimes it looks like she's getting better and then she takes a million steps backwards and she's back in bed. That's where she is right now. I can only sympathise with those who have to suffer it. We're still hoping for a medical breakthrough! :) Though, her doctor appointments are very reminiscent of yours ...

Annie said...

I'm right there with you on the shoulder shrugging and head shaking with a sometimes sympathetic look from the dr.

Big gentle hugs and understanding xx

Attila The Mom said...

Big hugs, my friend.

talesNtypos said...

*hugs*

Charlie said...

Incredibly strange, Kim, and I can understand your frustration. "Why me?" is a question all of us ask, but there is no answer.

Suz said...

Don't let them write you off. Keep pursuing it. Some young and innovative doctor will figure it out. You know your body better than anyone so keep at it.

I'm pulling for you.

mapstew said...

It must be Very, very frustrating!

(How are you doing with the portraits?)

debra said...

(o) xo

TheRextras said...

Probably. Which is better than possibly, eh?

Wishing you another avenue, path, physician to give you hope and better answers.

Barbara

Eryl Shields said...

Oh, knickers, X

Tiffin said...

Kim, keep trying until you find a doctor who understands the disease and how it affects you. You've just hit the end of one doc's knowledge, not the end of the road. Explore things with a nutritionist. Maybe a non-quack naturopath could help?

Also, maybe keep a log of what you eat & drink, as well as how you feel? It might help unearth things which are triggers for low spells.

Good luck with it, Kim. I hope you get some resolution soon.

Zaedah said...

Having MS means that I have to explain my varied and occasionally silly symptoms to stone-faced doctors (and sometimes ordinary people) who look at me like I get paid to invent things.

Fatigue is real and while I have a documented, two-letter reason (when it turns up to make me yawn at my desk), it must be impossibly frustrating when they can't give you a sound reason or a course of management.

Helen said...

Hey Bearded One - I really hope your tomorrow is a much better one!!

hope said...

Extra big hug!

Seems doctors are not real big with some of us this week. I even entitled my post, "It's Not Me Doc..It's YOU!"

I think the only way to win is be stubborn and persistent.

Until then, we may not be able to fix you, but we do care. :)

Jacqui said...

I'm sorry you had a tough day. I hope today is better.

Jasmine said...

I definitely agree with the others. Maybe it's time to find a new doctor. One who won't give up and is more knowledgeable. The first opinion is usually not enough.
About a year ago I took my boyfriend to the hospital because he was feeling deathly ill. After waiting around forever, the doctor finally told us it was nothing more than a sore throat and prescribed some antibiotics. So we went home and that night he woke up with a fever of 104 (Fahrenheit) and rising so we rushed him to another hospital. The new place told us we were lucky to have gotten him there when we did because he had pneumonia and bronchitis. They had to hook him up to an IV and it was just a horrible experience. I know the story is a bit irrelevant, the the lesson isn't.

Hindsfeet said...

Just wanted to offer a little hope...

My heart goes out to you tonight as mom was diagnosed with CFS and Epstein Barr Syndrome....She was about your age....She is now 63 having come through it and in fine health, swims every day at the YMCA and enjoys a very energetic lifestyle....There is hope, Kim...

This thought came to mind as well as I was reading your words...thought it might breathe hope to you tonight...

"Why do you say, 'My way is hidden from the LORD, and my right is disregarded by my God'?

Have you not known?
Have you not heard?
The LORD is the everlasting God, the Creator of the ends of the earth.

He does not faint or grow weary; his understanding is unsearchable.

HE GIVES POWER TO THE FAINT, AND TO HIM WHO HAS NO MIGHT HE INCREASES STRENGTH.

Even youths shall faint and be weary, and young men shall fall exhausted;

But they who wait upon the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." -Isaiah 40:27-31

May it be so for you, I pray with all my heart, my friend...you are NOT a lost cause.....

"Hindsfeet"

Roschelle said...

((((((Big Hugs)))))) ....haven't been 'round in a while. Certainly hope you start feeling better.

I'm right there with you...at the ripe young age of 40. But our best years aren't behind us...they're yet to come...we've just got to get over a few hurdles first...

Hang in there dear friend across the pond :)

Pat said...

I wish I could make it better. For what its worth I'm sending loving wishes. I can't help wondering if the exhibition is exhausting you. Don't despair Kim.xoxox

Katie Roberts said...

Bugger, sorry your Dr let you down.

Western medicine has only one facet of the knowledge about our bodies, that human being's inquiring minds have discovered with over thousands of years. I don't know how you feel about complimentary medicine Kim but sometimes real answers can be found there when western med lacks.

Naturopath, Chinese medicine, or even simple chi gong and thai chi come to mind... they work with your 'chi' or life force energy.

If your open to a different perspective on this that is.

I hope you feel well soon Kim.

Falak said...

I can't tell you that it's ok and that you'll get through it fine because I never will have the slightest inkling of what you're actually going through. Don't let that sense of being written off and being abandoned get you. I for one know how difficult it is to fight against despair but it's not impossible. Sending all my prayers and best wishes:)

Kim Ayres said...

Savannah - ((hugs)) back :)

Carole - aye

Danielle - I'm fortunate in the fact I've never been bedridden with it. There are many days when I'm not capable of achieving much, but I've always been able to get out of bed (however much I might not want to). I wish your mother all the best

Annie - thank you :)

Attila - ((hugs)) to you too :)

talensNtypos - ((hugs)) in return :)

Charlie - actually I can cope with the "why me" aspect - in a random universe, it's just one of those things. What I struggle to cope with is being written off with no answer as to what's wrong, what's going to happen and what can be done (or not).

Suz - it was the young doctor I most recently saw - this is my 3rd

Mapstew - it is. Portraits are moving forward. Only another 14 or so needed

Debra - thank you :)

TheRextras - I'm not so bad today, thanks :)

Eryl - it's pants too...

Tiffin - I have an appointment with a nutritionist next week, although I already eat a healthy diet, so I don't know how it will go

Zaedah - I have a good friend with MS so I know it's no fun - my thoughts are with you

Helen - not so bad today :)

Hope - thank you.

Jacqui - not so bad today :)

Jasmine - unfortunately, this is the new doctor. The 1st was only there for a month after I presented my symptoms, then I was passed onto another who, after I had to keep pushing and chasing gave me the CFS label. The 3rd just wanted to keep me on anti-depressants. I thought I'd try another and start from the beginning again, but this is the all too familiar point I've reached again.

Hindsfeet - while I appreciate your intent is well meaning, I will ask you not to quote bible passages at me. I respect the right to each person to worship in the religion of their choice, but personally there are aspects of Christianity, especially the old testament that I find deeply offensive. I would not dream of pushing athiestic dogma on your blog, so I have to ask you to refrain from religious platitudes on mine

Roschelle - part of the problem is no one can say whether it will disappear eventually, remain as it is for the rest of my life, or become degenerative so I will only get worse as time goes on.

Pat - the exhibtion is taking energy, but it's also giving me much needed enthusiasm, excitement and direction too :)

Katie - I do Tai Chi, although not as much as I should. I must admit a certain scepticism for many alternative medicenes, although I'd be happy for a good placebo right now - placebos can work wonders :)

Falak - this was written in the raw emotion of the moment. Already I'm bouncing back and today is a better day, emotionally :)

Z said...

Kim, I think your heart and strength is impressive in the circumstances. I'm sorry that nothing has come up in the tests that can offer you effective treatment. If anyone can overcome it, you can, and I'm so sorry that what should be energetic and fulfilling years are taken up in just getting through the days. You do damn well in the circumstances - but that's no consolation.

Katie Roberts said...

Ahh, yes a good placebo - the power of the mind!

May I tell you a story? My Grandad was a chemist and he never gave his kids medicine. Whenever they would complain of something, he gave them this special tonic, a magic clear liquid in a small bottle, it always made them better... was was in it? water!

I wish for some magic, crystal clear, highland water to bring back your full health and vigour!!! :)

I hope you wont let your sceptisism prevent you from being open to a possible solution. Naturopaths are like nurtitionalists, with herb knowledge and a few other skills & diagnostic tools thrown in.

At the risk of telling you an unwanted irrelevant story my son had chronic ear infections for a year and a half, there was talk of an operation. We went to a naturopath, she took him of dairy and he has never had one again.

It may not be that easy in your case, but it highlights for me how they understand simple things many Dr do not.

pilgrimchick said...

I can entirely understand how you feel--a friend of mine was sick for YEARS, and she was exhausted for all of that time without explanation. The doctors had no idea what was wrong with her, and she was only about 20! I think whatever it was, it went away on its own--no one figured it out.

I wish you all the best--I hope this clears up quickly.

Dianne said...

I can empathize. I have fibromyalgia, not that anybody really knows what that is. I too have to consider things like "if I walk to the end of the mall will I be able to get back" or "I have errands to run, but I can only do 2 or 3,which ones can I put off". I have pain every day, all day. I've had to give up a lot of things that make me who I am. Getting up and ready to face the day is a huge effort and I have to sit down and recover from it. I ask the same thing - why? I'm 58, not 85. It's too soon to be this old. I wish I could say something to help but I know words won't do it. We want change and it may not come. Just know that there are others who really know your frustration and understand your needing to rant now and then. I keep a journal where I do my ranting (my ranting isn't very polite). I wish you better days, and if they don't come I wish you strength to face the bad ones, and faith enough to believe that there is a plan, even if it looks like a crappy one from here. Take care.

Kim Ayres said...

Z - I don't think my heart and strength is that impressive. I have good days and bad days: days when I get by and days when I fall apart; days when I'm optimistic and days when I give up. The only difference is I periodically blog about it

Katie - I go and see the nutritionist this Thursday and then we get to see whether all my problems will be over if I just cut something out of my diet, or I'm faced with another shrug of the shoulders

Pilgrimchick - did it go away? I ask, because I've heard several times of people saying someone else got better on thier own, but when I investigated further, it just turned out they'd found coping strategies for living with it, which is quite a different thing

Dianne - I know a couple of people with fibromyalgia, and know it's no fun. I've always been fortunate that I don't get the pain in nerves, muscles or joints that other Fatigue related conditions often express. I'm afraid I have no faith or belief in any plan, but I wish you all the best

V said...

Hi Kim,

I don't want to offer any platitudes, but hope you get some useful support from the nutritionist and that you are listened to.

One of the toughest things about this type of situation is lack of understanding from others - there's no broken leg to see, operation scar that easily communicates what you're going through.

About fifteen years ago I had what was nominally diagnosed as Post Viral Fatigue Syndrome, it was rather felt like they were sticking a label on something for the sake of it, just to do something rather than nothing. I had to repeat a year of uni as a result.

It was a hugely frustrating and demoralising time. And, looking back, it wasn't so different from dealing with the blackest of black clouds of depression but I did get better. Dealing with chronic fatigue is grim, so you're in my thoughts.

Keep pestering for the support you need and look after yourself,

V

Chocolatesa said...

There's a very sweet girl I know in Australia that has had this for years too but recently got better under the ministrations of a naturopath. Here is her blog http://candleprayer.wordpress.com/ , send her a message, maybe some good can come of it, maybe you can find a doctor similar to hers in your neck of the woods, or if not maybe trading stories will help. Hugs and prayers.

Kim Ayres said...

V & Chocolatesa - thanks for your continued thoughts :)

michael greenwell said...

i don't put photos of my face online.

i have no idea why.

mystery? no. why would anyone be interested?

fear of exposure? no. why then would i put my name to everything i do?

fear of giving something personal? no. why would i write otherwise?

Ron Tipton said...

Kim,
I'll be frank with you. I do not understand CFS. I've been blue, down and even depressed but never the slog that you go through. What I do understand though is that through your blog postings you have made many other people's lives richer. I hope you're around for a long, long time.
Ron

Kim Ayres said...

Probably the best description I ever wrote of what it feels like to have CFS was in a post nearly 3 years ago called Chronic Friday Afternoon Syndrome if you're interested