Tuesday, December 18, 2007

Where do we go from here?

.
So what are my options then? Where do we go from here?

Well I’m afraid we’re rather limited at the moment. There are a few things in development with CFS, but they’re not likely to materialise for a year or two.

But you can put me down for the Cognitive Behavioural Therapy?

Yes, but you do understand it’s not a cure, just a help for managing your condition.

I understand that. But you have no idea how long the waiting list is yet?

Not yet, no, but I’ll keep you informed. However, we’ll keep you on 40mg of citalopram to combat the mood drops meanwhile.

And I’ll go and see the specialist again in February, although I don’t expect anything to come from it.

Admittedly he didn’t tell us anything we didn’t already know, Mr Ayres.

The problem is I still don’t know whether this is something that will sort itself out in 6 months; will ease off after 5 or 10 years, though I may never fully recover; stay like this for the rest of my life; or whether it is in fact degenerative and I’ll only ever get worse.

It could be any of those four options, we just don’t know.

So what I have to really do now is just build my life around the fact that for the foreseeable future – the next few years or more - I have to live with this Fatigue, with no real end in sight.

Well I am hopeful of developments on the way...

But they might not be available for quite some time.

I’ll keep you up to date, Mr Ayres.

...

...

...

There wasn’t a bar of chocolate in the house big enough to plug the great gaping void in my chest last night.
.

33 comments:

ADW said...

Darling, there is a lot of love flying your way from across the pond.

savannah said...

sugar, ADW is correct...lots of love & good thoughts streaming your way *hugs*

jotcr2 said...

Take it easy. Things will turn around. Read 'Mans Search for Meaning'. However, you probably already have given your interest in Philosophy.

Kuin said...

we have to get you more peanut butter m&ms fast!!!!

Fat Lazy Guy said...

Mate... doctors can be bastards sometimes.

I'm not sure about Cognitive Behavioural Therapy, but I know a little about Cognitive Therapy. I took a course on it a few years ago. I can't remember a lot of it though.

Jupiter's Girl said...

That just sucks, Kim. I'm adding my good vibes to the mix with all the rest you've got coming your way. Peace. Namaste'.

Kim Ayres said...

Thanks ADW, Savannah, Jo, Kuin, FLG and Juiter's Girl for the positive thoughts.

But Kuin, if I have too many peanut butter M&Ms available I'll be back up to 275lbs in no time...

Tom said...

Sorry, Kim. I shot you an email since chocolate doesn't seem to be doing the trick anymore.

Sam, Problem-Child-Bride said...

Oh that's bad luck, I'm sorry, Kim. It sounds frustrating. It looks like it may have to be a case of managing it rather than curing it. Whatever managing it means. The doctor didn't seem to have too many suggestions. Have you had a scout around the net to see if there are other people in your situation? You could maybe crib some of the techniques that work for them and see if they make a difference for you.

It must be rubbish being that tired all the time - and a bad time of year to be hearing the only option is just "as you were". Keep plugging away at it though, and looking for information on it. I hope you can find something that works for you.

Jeff said...

Kim

Hang in there Brother...this particular item we have much to talk about sometime.

Peace

angie said...

i'm sorry.

hugs from texas coming your way . . . want some jerky though? (it's not fattening like sweets . . . ) =D

Mary Witzl said...

I know a few people who have suffered from constant exhaustion and insomnia, and all of them have struggled to find a lasting cure. Recently, one friend has improved to such a degree that he can now do things he could never have done when he was really bad off. He may be at the party on Saturday, and if he is, maybe you can trade stories. I agree with Sam that a support group could really help you get some ideas -- and, of course, support.

Brave Astronaut said...

Excuse me, sir? Yes, Doctor? Have you been treating Mr. Ayres? Yes, thank you. Would you come with me please? Trust me, this won't hurt . . . much.

Chin up, Kim. I am sure there is a light at the end of the tunnel and that it is not an oncoming train.

Zazzy said...

Kim, as someone dealing with chronic conditions - sometimes having a label for what is happening to you is more helpful than you might think. Right now you may need to grieve the lack of easy fixes but soon you will adapt, learn to do what you need to do to take care of yourself, and even be greatful for the many wonderful things in your life outside of this condition.

Hugs and happy holidays!

The Hangar Queen said...

Kim,
I think your doctor needs a kick in the bollocks actually.

Second opinion?

In any case I'd like to add to the freighter full of love en route to you.
xx Dev

Julie said...

I kind of understand the frustration. I'm going through fertility treatment. (Hubby had his one and only test.) I've had more tests during the past year that ever before in my life, and everything is coming back normal. Meanwhile, I have have this complicated mess of prescriptions, and it's not helping. Every now and then I think it's just not meant to be.

But, then, maybe there's something that will work just around the corner.

I hope we both turn that corner soon.

Dr Maroon said...

There was a thing on the wireless last night that said CBT was a crock.

Sorry.

Eryl Shields said...

Oh man, don't you just want to scream and bite people? I would, I'd want to break things and punch walls and wail pitifully and shout 'why me!!!!' And upset beautifully laid tables and curl up and suck my thumb.

I can't imagine what you must feel like. I've been tired of course, even very tired. But a good nights sleep has always sorted me out. Being utterly exhausted day after day, not knowing if it will ever be over. No, I just cannot imagine it. And so I can't imagine what might help. Sorry.

Kim Ayres said...

Tom - chocolate does work, but only for the time that I'm actually eating it...

Sam - At the moment I'm still feeling a little overwhelmed with the implications, but once I get past this bit I'll be on the lookout for solutions or management techniques.

Jeff - you'll need to send me your email

Angie - you know, I don't think I've ever actually tasted jerky. Can't say it has a great deal of appeal...

Mary - do introduce me then :)

Brave Astronaut - did I hear a whistle?

Zazzy - I know once I get through the immediate feelings I'll start building anew.

Hangar Queen - the doctor himself is actuall quite a nice guy, it's the specialist I was seriously unimpressed with. However, I could have done with him presenting me a few more options

Julie - I have a friend who's been through fertility treatments and I don't envy you the extraordinary number of tests and drugs. I wish you all the best

Dr Maroon - I've heard people arguing CBT is bollocks when talking about a cure - it isn't a cure - but it can be useful in learning how to manage the condition.

Anyway, I wouldn't believe everything you hear on the wireless, unless it's radio 4, and even then they'll balance it out with another person who will disagree most strongly on a different programme.

Eryl - the problem with screaming, biting, punching and breaking things is that I can't keep it up for long without needing a lie down afterwards.

And don't worry, I'm not expecting you to come up with a solution - I just need to write these things to get them out my system

PI said...

Well still and all I'm wishing you and the family a really lovely Christmas and a happy healthy 2008. So many warm feeling towards you.

redhead83402 said...

Ahh Kim ~ I may have something that might help a little. Have you ever heard of light therapy? apollo.com has these light things that rezally have helped my husband. He had terrible depression, mood swings, and fatigue, or perhaps lack of oomph. No zest, or desire to get things done. Once he started using this light, it was like he was a new man. Of course, one of the hardest parts of this type of therapy is that you must actually use it, and somethimes he forgets, or doesn't have time, and then he gets dark again, and doesn't even want to try to use it. After a time, ( sometimes I just turn it on while he sleeps, and put it near him, at least a little gets through that way, sneaky, but necessary) he will get back to it, and he feels better almost within the hour. It isn't a pill, it doesn't have any side effects, and if you prefer natural ways of medicating, rather than mind-altering drugs, it might be worth looking into.
We love you and yours!! Take care, and Happy Christmas!! ( or Hannukah, or Winter Solstice.... ) :-D
~Red

Carole said...

Tee Hee...I know the post isn't funny, but I just checked your blog to see if you had any comments for my heartfelt comments. And to my chagrin there were no comments. I am not sure what happened--although I must not have pushed the PUBLISH YOUR COMMENTS button. I was right after rotcr2. *Sigh* And you think you have problems.

Kim Ayres said...

Pat - thank you :)

Redhead - thank you, I'll look into that :)

Carole - after seeing the photo of you standing on your head I would forgive you anything :)

Dr Maroon said...

Kim, you're like, totally right. It's a symptom treatment according to R4.
But
Kim you're like totally wrong,on the chocolate front cos i was in like asda last night and they've got this like gigantic like BAR of chocklit that must be like four feet high and like 2 inches thick.
It's like 4.99 or something.

I bought three.

Greedy.

Freakazojd said...

Did somebody say "Chocolate"?! :)
In all seriousness, I was sad to read this post. It must be so frustrating, especially at this time of year when it's particularly nice to get GOOD news to hear instead such a vague "I don't know but hopefully something will turn up..."! I hope you can find something that helps soon, at least for as long as it takes for them to find some concrete answers for you.
xo

Kim Ayres said...

Doc - four feet high and like 2 inches thick mmm? That would last about 20 minutes...

Freakazojd - at least I've got christmas to help me take my mind off things for a bit now. Thanks for your thoughts

TheAmpuT said...

I kinda wonder about your being given four options...I mean, maybe the medical fucks dont know which outcome you'll end up with because you get to CHOOSE (?) Just sayin'...maybe choice is a piece of the puzzle ??! I sure like to think so. It lifts me up a bit to think we all have a little say-so over big things like this (having been the recipient of mighty big, albeit different, physical things myself).

I am sending much mojo your way for much joy and prosperity. I even bet I can make my mojo and good vibes as big as chocolate ;-) Hang in there...

MaLady said...

I keep checking back wondering if your sleep is improving because I've been feeling slight pangs of guilt when I sleep great (more frequent recently, but not common).

Those who know me well would laugh at this - my mind has also been whirring away in the back of things trying to put together any bits I've learned about sleep. Thus, I keep wondering if you may have a vitamin/mineral deficiency or toxic buildup from all the weight loss? I understand that toxins are stored in fat, so losing weight releases them. I have a "stress complex PM" supplement that is surprisingly mostly B-complex vits, C, lemon balm and such. It works well though I only take it occasionally.

Just one mama's wish she could help.

Ma Lady

Kanani said...

Yes, CBT....any therapy is needed to help you and your family cope and manage. So yes, I hope you get some assistance soon. After years of asking, we finally got something called "wrap around" services for the whole family --finally I have a parent partner, my daughter has a youth mentor --all to help cope with my son and his dad who are both bipolar. It's a lifeline, a after years of going it alone and really struggling.

I'll think good thoughts for you and the family.

Kim Ayres said...

TheAmpuT - the four options were ones I stated, rather than were given. Thanks for the mojo :)

MaLady - for goodness sake don't feel guilty for getting a good night's sleep! You should be enjoying it to the full!

As for the toxins thing, my weight has been steady now for nearly a year, so I would have thought anything like that would have worked its way through my system by now, but thanks for your thoughts :)

Kanani - I'm glad you're getting some support now - wishing you all the best

Stella said...

Bummer Kim

MaLady said...

Oh, did I forget to say that it was how much I enjoyed stretching after those full nights of sleep that left me feeling those slight pangs of guilt?

Kim Ayres said...

Stella - yeah

MaLady - ah, now, if you're going to bring stretching into it, you're just rubbing my nose in it, ye crewel wummun...