VENT - nothing is helping me??

[sunkacola]

Good for you for working on it. Thinking about the worst case scenarios only makes it more likely that they will occur, if it is in your own body, so this is something good to do for yourself.

I personally am working on something these days that I am calling "Radical Acceptance". I think it's called for this year, when everything around us is going so badly. It's not easy, but it is the only way to find peace.

The truth is: The degree to which you can accept what is in any given moment is the degree to which you can have peace in that moment.

 

[JayCS]

Hi kait0220 -

I've also tried 50+ types of treatment, but at least I've found things that help a bit (mainly icy cold), hope you will find something, too.

I've adapted my hobbies a bit - I often can't walk much, but can ride a bike well. My granddaughter has to be patient with me and play pretend to go to sleep games and not just run around any more, unless it's a really good day.
I've always had to eat healthy and tried new diets, they don't help me.
Weight lifting is often fairly OK, I just have to take the length of time down, 20-25mins'll have to do (sometimes the amount of weights).
I've tried swimming again, and there too: no speed, no pressure, sometimes I can do some underwater, sometimes I can't. 20 mins. Beautiful while it lasts. I miss "wild dancing" a lot, can only do a few minutes once in awhile, but I can't even go out after 7/8pm anymore, unless to friends where I can lie down, and go home at 9pm. But I now have more time to make music - for dancers...
But I've just been shown by in a group therapy that I can still dance a bit longer than I thought if I don't use (up) all my energy in 3 mins like I used to and swing more with the flow.
I was privileged to have a lot of energy and do a lot of things for a long time, much more than others. Now I'm "back to normal".
To get things done like yard or house work I have to mix up what I do more than before, 10 mins here, 10 mins typing mails etc..

I sometimes flaunt my 30 diagnoses and disabled status ironically and then say: but I'm not really sick or disabled (confuses some) and considering, I'm still full of energy, and get more done, more than a lot of people I know who haven't even got much dreams or interests, my life is much more interesting.
I've also fairly internalised the feeling that I can't let anyone down: Everyone has the right to stick to their limits, even I do ;-).

@RLG: For sleeping on the camping trip - remember to take enough for your back, your eyes (eye mask?) and ears with you...

 

[Affinity]

I can totally relate to this!

I think for me the most frustrating thing is that sometimes I can actually find things that help for a while but then they don't help and I need to keep searching. I am grateful for the momentary relief but I am also overwhelmed by the constant searching and trying and hurting and even the compassion and "radical acceptance" work can be exhausting!

I agree we have to keep trying but when I feel this down it's hard not to want to go off and be by myself indefinitely ... but I have to keep showing up for my family so I don't allow myself the luxury of shutting down. I keep pushing and keep trying. I am opening myself back up to therapy to help with the overwhelm in addition to so many other modalities I am working with. There is always something else we can do, and sometimes we have to know when NOT to do something, too. Tricky balance for all of us, I think.

 

[sunkacola]

I can totally relate to this!

I think for me the most frustrating thing is that sometimes I can actually find things that help for a while but then they don't help and I need to keep searching. I am grateful for the momentary relief but I am also overwhelmed by the constant searching and trying and hurting and even the compassion and "radical acceptance" work can be exhausting!

I agree we have to keep trying but when I feel this down it's hard not to want to go off and be by myself indefinitely ... but I have to keep showing up for my family so I don't allow myself the luxury of shutting down. I keep pushing and keep trying. I am opening myself back up to therapy to help with the overwhelm in addition to so many other modalities I am working with. There is always something else we can do, and sometimes we have to know when NOT to do something, too. Tricky balance for all of us, I think.

I know exactly what you mean. I have many times now tried something new....most often it is a new form of exercise, because I avoid pills at all times....and it is great for a while and then my body crashes and I can't do anything for two weeks. It is terribly discouraging.

A close friend once said, after one of those crashes, "you just have to keep at it until you find the sweet spot", and I said, "well, it would be a lot easier to find if it didn't keep moving!".
I think that's the thing. FM is not predictable, nor always the same for a person from one day or week to another. One day something works and the next day it doesn't and you never know what each day will bring.

I guess my approach is pretty basic, and kind of a hard line. I figure that life doing nothing and confined to the couch unable to get out and do things I love to do is truly not worth living. So, I have two choices. I can either decide to die right now and proceed to do do that, or I can keep working on it and trying things. Clearly I have decided to keep at it. I can't give up, because that isn't an option unless I want to die.

Every one of us has a body that wants to live, and wants at all times to seek health and well being. We just have to keep our minds from giving up on it, and keep giving the body opportunities to continue, and keep supporting it in its work to try to be healthy.

 

[Eff2013]

Well said Affinity and Sunkacola!!!!! We have to keep trying because what would be the alternative? Life would not be worth much if we had to spend it on the couch or in bed. We owe it to ourselves and to our loved ones to keep seeking.
Hugs to you all

 

[JayCS]

things that help for a while but then they don't help

Our sweet spots keep moving - brilliant, thanks sunkacola! Yep In activity as in remedies it often needs not stopping, but more or less of the same... Like my whole body cryotherapy, i.e. a cold "barrel". In June -130°C the first time was too much to take, then -110°C was pretty good, several times (3 mins., 4x/wk.), then it fell off :-/. A decision to go back down to -120°C/-190°F was great and held on for a longer time, esp. with acupressure after. Now I've been in a rheum. clinic where I wanted to try their "cold chamber", but it was 'only' ;-) between -75 and -110°C, which does only a bit more for me than a 2min. cold shower. Now I'm hoping it will help again and will carry on even in the upcoming colder weather...

 

[JayCS]

Like a moving target, the sweet spots keep evading us...

 

[JayCS]

I think we do have a lot of moving sweet spots, but not every symptom, activity or treatment etc. has one.
e.g.: to improve my sicca-symptoms the sweet spot is *always to drink my first litre before 11a.m. and my second before 2p.m.

Still thinking about your Radical Acceptance, sunkacola. I'm trying to develop an inner image for this attitude till it fits and helps me.
I don't want to see my fibro-ache as a friend or an annoying relative (suggestion of a good psychologist I talked to in the clinic),
but praps as a crying, bawling and sometimes screaming child,
sometimes praps a teacher showing me I've been overdoing things?

What do you think?

 

[Affinity]

JayCS I have not tried cold therapy but it sounds great. I use ice a lot and have an infrared sauna that is helpful although since it is hot here I have not been using it over the summer.

I recently read a book called "The Body is Not An Apology" about radical self-love and it might be a place to start. It wasn't my favorite book but it was thought provoking and challenged the way I see my own body.

 

[sunkacola]

Still thinking about your Radical Acceptance, sunkacola. I'm trying to develop an inner image for this attitude till it fits and helps me.
I don't want to see my fibro-ache as a friend or an annoying relative (suggestion of a good psychologist I talked to in the clinic),
but praps as a crying, bawling and sometimes screaming child,
sometimes praps a teacher showing me I've been overdoing things?
What do you think?

I think the psychologist gave you a terrible suggestion. If a person did that, it would set up an antagonistic relationship with your own body, which would lead only to further problems. I also think the same about thinking of it as a bawling or screaming child. That's a really good way to end up hating your own body and getting frustrated and angry with your condition, none of which will help, and all of which is likely to make things worse.

When I said "radical acceptance" that truly meant ACCEPTANCE. Acceptance of what is in this moment as being what it is. With acceptance of what is comes peace of mind. With that peace, you can far better work out what you want to try to do to improve the situation if it needs improving. If instead you are constantly fighting with what is, or trying to call it something that it is not, or saying to yourself that it "shouldn't" be happening or getting angry about it or feeling sorry for yourself or having any of a million emotional reactions to it, you are not thinking clearly and calmly. And, as I have said before, acceptance has nothing to do with approval. But it does mean not wasting your energy.

 

[JayCS]

moving sweet spots

What's more, moving sweet spots are often *invisible: After a bad night I've now had a good night's sleep.
My nose is closing up again at night tho, and I often can't tell if I'm too hot or too cold.
Usually getting up for 10mins. helps, tonight it didn't. Blowing my nose didn't do anything, like often, there's nothing to blow, it's further up.
So I put a nose strip on, that helped. But I still felt wretched. It's got colder, so I've got more on. Then I tried a hot water bottle on my feet.
That helped nose and body... Next week it's getting really hot again for one day, then cold again... *sigh*

I think the psychologist gave you a terrible suggestion. If a person did that, it would set up an antagonistic relationship with your own body, which would lead only to further problems. I also think the same about thinking of it as a bawling or screaming child. That's a really good way to end up hating your own body and getting frustrated and angry with your condition, none of which will help, and all of which is likely to make things worse.

When I said "radical acceptance" that truly meant ACCEPTANCE. Acceptance of what is in this moment as being what it is. With acceptance of what is comes peace of mind. With that peace, you can far better work out what you want to try to do to improve the situation if it needs improving. If instead you are constantly fighting with what is, or trying to call it something that it is not, or saying to yourself that it "shouldn't" be happening or getting angry about it or feeling sorry for yourself or having any of a million emotional reactions to it, you are not thinking clearly and calmly. And, as I have said before, acceptance has nothing to do with approval. But it does mean not wasting your energy.

 

[JayCS]

terrible suggestion. ... thinking of it as a bawling or screaming child.

Thanks sunkacola, that helps! I started thinking the same about the 'bawling child' yesterday, it wasn't working for me, it was unpleasant. You've helped me cut that short. What you are saying reminds me of the here-and-now-stance I developed 7 years ago, which very quickly alleviated a lot of my remaining "fears" (also the most helpful mantra for my social phobia 25 years ago was FACE - ACCEPT - FLOAT - LET TIME PASS). It also helped my accept the fibro-dx from the beginning on. I'll keep and adapt that, in the way you say. Thank you!!
Edit1: The phobic pain was like having had a rhino run over me, but a bit different to fibro-pain. The big difference is when I accepted the fear & pain and floated/surfed in/on it and let time pass, it went away. This doesn't at all. Probably what you mean by *'radical' acceptance, sunkacola? I guess that way it loses or looses its grip on us, that is now what goes away, not the pain itself.
Edit2: Just spoken about this with my wife - she definitely likes the crybaby idea tho, because it shows how my body is in a new way crying for attention. Since I've found many ways of alleviating the ache & pains, this means: first looking for what it might be telling me and implementing everything I know or looking for new ideas. First, the crying seems the same and vague - what the baby needs is often not clear. But in many cases I've developed a sensitivity to what it needs and can give it that.
Edit3: Talked again, now she's reminded me that before she sent me to the 1st & 2nd rheum., I ignored and suppressed the stiffness & pain, thinking it was old age and praps a bit of fibro and I'd manage (which then quickly wasn't the case any more). Accepting doesn't mean suppressing, of course. She suggests finding a balance between looking after the baby and accepting (it?).

 

[JayCS]

Edit3b (60mins. is the limit for editing, I've learnt ;-):
, of course not hating it: I do know roughly what it's like to have a "Schreikind" (funny, there's no English equivalent!), at least I got to know my son at 2y.o. and I loved him (with ADHD and more) then and still do at 28. No reason to hate a crying child, even if it's ever crying or can't express what he wants...: he loved milk and juice, but kept confusing even these two words which could make us mad (now he's developed all the more verbose, but still often lacks purpose or aims). Good practice for fibro...

 

[sunkacola]

Hi Jay, As I said, whatever works for you works. I think that objectifying your pain and other symptoms in a way that divorces them from your own body is not helpful because your mind and body are one, not separate things. On the other hand, if you can think of it as tending to and taking care of your body, and listening to what it is telling you (ie: I need to rest now or will feel more pain later) then that is a good approach. If the crying baby means you will listen to what your body wants, then use it. I couldn't use that because a crying baby is very irritating to me, but everyone is different I like your: FACE - ACCEPT - FLOAT - LET TIME PASS . That seems like your version of my Radical Acceptance. Good for you.

 

[JayCS]

Ouch, you got me again, sunkacola *crying babies irritate me, too . Hyperactive, sensitive, fretful kid? Hmm.
Another image I had when social-phobic was having to care for *little me. Easier than "me now".
So that'd be: Quiet, but needy child-me... But crutches like that come from a time when I needed to help others more than myself.
Now I theoretically don't have that much of a problem caring for myself any more. So I'd be back at self-acceptance, breeding self-care.
I 'just' keep forgetting. But less and less. Don't want my body's new reminder-system to get more, rather less..
(BTW, OT: My FACE etc. came from a social phobia *mailing list from the late 90s, back when forums were uncontrolled against poisoning trolls, whilst high-traffic mailing lists were used more, but extremely bulky; just read up the differences...)