How do u survive the tough times?

[laura]

Hi All,
Just wondering what helps you get through the really tough times! I recently broke my foot (literally broke off a piece of bone), which has severely intensified my exhaustion and brain fog, and, obviously, has increased the difficulty of doing ANYTHING so much, much more than I would have expected.

Plus a breakup with a boyfriend (part of the reason includes my CFS). Plus a new, somewhat chaotic work situation. (Yes, I'm glad I've been able to work thus far. But still...)

I am just simply worn out from the effort of making it through every day. Trying my best to keep my mental state positive but it is difficult.

What has helped you????

Thanks,
Laura

 

[alice1]

I'm sending you a huge hug,
eat a giant piece of chocolate cake,know
the man isn't worth it if he's leaving because you're not well and remember this too shall pass.
xo

 

[CJB]

LOL! All I have to offer is a hug, too. This CFS is enough to have to deal with, but adding another injury and crummy life situation and it takes extraordinary courage to keep on keepin' on. So, my courageous friend, big hugs and a lot of admiration for your courage in the face of all of this crumminess. I second the chocolate cake advice!

 

[gracenote]

What has helped you????

Thanks,
Laura

Laura,

I had a friend who once posed a question to everyone she knew who was chronically ill. I've kept the responses but can't find them right now. She asked:

What sustains you?

For me it's a spiritual kind of thing, a sense that there is something beyond what I can see and understand at this moment. I have a hard time putting it into words, and it always sounds a little simplistic. But I am sustained by this belief or trust in something beyond my present circumstances. Whatever "this" is can no longer be defined by my former religious beliefs so I'm lacking language to describe it. But because of "this," I can find a place of rest in not knowing, and a way to let go when nothing seems to help.

Of course there are days when I'm just mad that life has to be so difficult.

It helps so much not to feel alone in the midst of my suffering.

And then somehow I'm able to find my way back.

I am very much tempted to delete this inarticulate post, but I will leave it here because it's a true answer to your question "What has helped you."

gracenote

 

[Timaca]

Having a faith in God, and knowing that there is a higher purpose for this pain helps me. I read various spiritual books.

Reading and watching humorous books/DVDs is also helpful. I enjoy Dave Barry books and Anita Renfroe DVDs.

Hugs, Timaca

 

[Misfit Toy]

I feel your pain. I went through a breakup last August. It wasn't all due to CFS but it didn't help. I broke up with him because he would not understand my condition. It was tough and still is. Cry!! Talk to your friends and have friends with the illness to talk to. That is what saved me. These past couple of months have been hard and when I reach out, I feel better. I always remember what my friend said; do whatever it is to make YOU feel better. For me that is taking a bath, watching tv, getting under nice clean sheets and watching a good movie. Cooking myself a loving meal. Do whatever it is that comes to mind that nurtures your soul and spirit. And know that people care! They really do. This illness can be a bum wrap and a foot injury to boot. Been there and done it myself!!

xoxo!

 

[laura]

thanks

thanks all for your support.

alice1 and cjb:
thanx for the hugs and chocolate...much appreciated! Truly, I knew I could follow my current diet, the blood-type diet, when I found my blood type could have chocolate...

gracenote, you weren't inarticulate. you and timaca remind me to strengthen my connection to Spirit. and that is often a place beyond words. I forget when I'm feeling so overwhelmed, and temporarily lose my faith...

spitfire, thanks for sharing your hard times with me...it helps to know I'm not the only one, and that others are able to survive their tough times. I am trying to stay connected to family and friends, and to be good to myself in little ways...

i send you all hugs back.
laura

 

[Sasha]

I'm so sorry to hear you're having such a bad time, Laura! It's horrible when you're struggling to have a normal life when your body has other ideas.

Raj Persaud (UK psychiatrist, nothing to do with ME/CFS) is interested in how people can mentally innoculate themselves against mental illness in the event of a disaster (major illness, death of a partner, loss of a job etc.) and I heard him lecture on "happiness" once. He said that anyone in distress has two choices: take action to improve their situation and, if that isn't possible, distract themselves. He said we'd be sceptical about this so asked us to consider someone taken hostage. Once they've done all they can to persuade their captors to let them go and exhausted all possible avenues of escape and decided to be vigilant about future opportunties, there's nothing else they can do to change the situation of being a hostage. All that's left to keep themselves happy is to distract themselves from thinking about it. He challenged us to think of alternatives but they all seem to pretty much boil down to that in the end.

Although it may sound simplistic, I've tried to use this strategy and it works pretty well for me (my friends always say it's amazing how I'm so cheerful!). for example, if I have to go to bed and rest in the day I can't change that but if I'm mentally able to listen to something, I make sure I've got some good radio stuff downloaded from the web to listen to on my cheap MP3 (try BBC Radio 4, it's great!) to distract my thoughts and avoid just lying there moping. I make sure I've got some fun project to do during the day even if it's just for half an hour. I also do that thing of thinking, before I go to sleep, of three things to be grateful for (they have to be different things each time but it's amazing how easy it becomes to think of things). And lately, I've started trying to meditate - it's very peaceful, even just for ten minutes.

I hope this helps - it sounds like you are at the stage where there might be some things you might consider changing about your situation (change job? job hours? more support from people?) but if you've already considered those and exhausted the possibilities and you're still "held hostage" then maybe it's a case of distracting yourself!

It sounds utterly trivial, the way I've described it, but it really has helped me to think of things in that way so I thought I'd mention it! Good luck and I hope that it helps to know that you're not alone!

 

[caledonia]

I agree with Spitfire, just be gentle and nurturing with yourself for now, whatever that means for you (chocolate, comfort food, favorite movie, warm bath, etc.)

In general, two philosophies have been helpful to me - one is from Buddhism which is to live in the present, don't live in the past or worry about the future. Practicing meditation helps develop this skill.

The other is the Christian philosophy (can't remember the exact quote), but if God takes care of the birds of the field and provides food and shelter for them, why wouldn't he do the same for you?

The thing about the prisoners distracting themselves reminds me of two interesting stories. The guy keeps getting sent to solitary confinement which is pitch black, so to pass the time, he rips a button off his shirt and tosses it somewhere in the cell. Then the game is, he has to find the button in the dark.

The other one, a guy is in a prisoner of war camp. He always wanted to learn to play the piano, so he makes a pretend piano by drawing the keys on a board with some chalk. He "plays" on the pretend piano every day, hearing the notes in his mind. When he finally gets out, he can actually play a real piano.

 

[starryeyes]

Laura,

I understand how you feel. You've been given lots of great advice here and it helps me to listen to what everybody is saying as well so thanks for starting this thread.

I completely agree with distracting yourself. I noticed when I worked with babies in daycare that distracting them when they get upset often works, so I figured that was a clue to how our human minds work. :Retro smile:

I do think you're also going to have to go through mourning the loss of that relationship and it's going to be hard but you will get through it. I think letting yourself cry and be upset and working through all of the emotions that come up will help you get over it and resolve it in time.

(((Hugs)))

tee

 

[MEKoan]

Hey Laura,

I can't really add anything to the wisdom you have received, and contributed, here. I will just say that your inclination to seek new coping strategies at a time like this speaks to a deep strength in you. Reaching out to find ways to survive all of this is such a healthy response to enormous difficulty.

One of the things that helps me is to remember that, whatever it is, "this too shall pass." And, to recall that I have withstood great difficulty in the past and have survived so I will survive this, too. I'm sure you have survived great difficulty too because if you had not you would not have the courage you are showing now.

Thanks for starting this thread!

Koan

 

[laura]

such good food for thought!

He said that anyone in distress has two choices: take action to improve their situation and, if that isn't possible, distract themselves. He said we'd be sceptical about this so asked us to consider someone taken hostage. Once they've done all they can to persuade their captors to let them go and exhausted all possible avenues of escape and decided to be vigilant about future opportunties, there's nothing else they can do to change the situation of being a hostage. All that's left to keep themselves happy is to distract themselves from thinking about it. He challenged us to think of alternatives but they all seem to pretty much boil down to that in the end.

I never thought about distraction in the way that you describe...that once you've taken all possible action, the best coping tool is distraction. That it's not avoidance, which has a negative connotation, because you've done everything you can. I think that's how I thought of distraction -- as an excuse to not address problems. But the way you describe it, when used correctly distraction becomes an optimal coping tool, to keep one's head on straight!

I like that. Thank you.
Laura

ps, yea the job isn't ideal. it definately fits into your example in the "be vigilant to future possibilities" part...

 

[laura]

I do think you're also going to have to go through mourning the loss of that relationship

yea, could be that it's the breakup that makes my physical challenges teeter over the edge of manageable...
laura

 

[Sasha]

I never thought about distraction in the way that you describe...that once you've taken all possible action, the best coping tool is distraction. That it's not avoidance, which has a negative connotation, because you've done everything you can. I think that's how I thought of distraction -- as an excuse to not address problems. But the way you describe it, when used correctly distraction becomes an optimal coping tool, to keep one's head on straight!

I like that. Thank you.
Laura

ps, yea the job isn't ideal. it definately fits into your example in the "be vigilant to future possibilities" part...

Thanks, Laura! Incidentally, I think that Freud described repression and denial as being healthy coping mechanisms in most people; his patients were those people for whom, in his view, the mechanisms had gone wrong (for example, denying that their difficult situation existed or repressing useful information about it). Freudianism is out of fashion these days (for good reason, many would argue!) but repression's bad name, in particular, continues as a legacy when perhaps it has something going for it.

I'm not sure if repression is the same as distraction but I'm a big fan of it! I make sure I do everything I can to improve my situation and to keep an eye out for new possibilities but once that's done, I make a point of not thinking about how bad my things are. If I'm forced to think about it (to fill in a form describing my symptoms and how they affect my life in order to get disability benefits, for example) I can get quite tearful and upset; but if I'm not forced to think about it and find my mind turning to it, then I go for distraction (which is maybe acting like repression, in this situation).

Recent neuroscience on neuroplasticity shows that the more you think about something, the more your brain rewires itself so that you can think about it easily and do it well (which is why practising makes people better at playing the piano). I don't want to think about the miserable aspects of my crappy situation easily and well so I try not to give my brain the chance to change itself in that direction.

Good luck and thanks for starting this thread, which I've enjoyed reading - people have said some really good things which I'm sure we've all taken benefit from.

 

[*GG*]

Good question Laura,

I guess what are the alternatives. Take things as they come. I have tried all kinds of things for CFIDS/FIbro. Things that I probably never thought I would try. Acupuncture, not lasting enough. Lidocaine infusion, helped knock down the pain.

I am still working also and will likely file for bankruptcy very soon. Bad investment and cannot meet my Credit Card obligations, oh well, there are worse things that could happen. I am likely to clean house at the same time and dump my girlfriend because she has no empathy and no interest in helping me deal with my condition. I met her when I was sick, but did not have a name for it! It all started with Mono, and I never recuperated. Damn PCP just said hopefully your immune system will bounce back within 2 years, well it didn't! They sent me to the hospital initially because they thought I had a blood infection, Mono determined at Hospital and they said you can't spend the night, insurance will not cover it.

I have been fighting with my employer (State of MA) since getting my FMLA in 2005! They think they are above the law! A lawyer has helped with that, but has cost me some money!

Thanks for hearing me out, venting is a good thing, especially to people who truly understand the illness! Just started going to support grooups.

Hi All,
Just wondering what helps you get through the really tough times! I recently broke my foot (literally broke off a piece of bone), which has severely intensified my exhaustion and brain fog, and, obviously, has increased the difficulty of doing ANYTHING so much, much more than I would have expected.

Plus a breakup with a boyfriend (part of the reason includes my CFS). Plus a new, somewhat chaotic work situation. (Yes, I'm glad I've been able to work thus far. But still...)

I am just simply worn out from the effort of making it through every day. Trying my best to keep my mental state positive but it is difficult.

What has helped you????

Thanks,
Laura

 

[laura]

ggingues
Sorry things are so rough now for you! It was suggested to me that I sue the owners of the building in which I broke my foot, but even the thought of entering into litigation makes me want to crawl back into bed...

Which is to say, that your situation sounds very overwhelming.

I pass along to you the hug and chocolate (or is the chocolate just a female thing? )
Laura

 

[MEG]

Sustaining us

Laura,

I had a friend who once posed a question to everyone she knew who was chronically ill. I've kept the responses but can't find them right now. She asked:

What sustains you?

For me it's a spiritual kind of thing, a sense that there is something beyond what I can see and understand at this moment. I have a hard time putting it into words, and it always sounds a little simplistic. But I am sustained by this belief or trust in something beyond my present circumstances. Whatever "this" is can no longer be defined by my former religious beliefs so I'm lacking language to describe it. But because of "this," I can find a place of rest in not knowing, and a way to let go when nothing seems to help.

Of course there are days when I'm just mad that life has to be so difficult.

It helps so much not to feel alone in the midst of my suffering.

And then somehow I'm able to find my way back.

I am very much tempted to delete this inarticulate post, but I will leave it here because it's a true answer to your question "What has helped you."

gracenote

Gracenote, Thank you for not deleting this..I needed to hear it tonite

 

[*GG*]

Yes, I like chocolate, dark due to supposed health benefits! I feel better than I have in the past, had to find a Dr that can actually help! Rough is the last 7 years of my life, unfortunately getting used to it, or maybe that is good, otherwise??

ggingues
Sorry things are so rough now for you! It was suggested to me that I sue the owners of the building in which I broke my foot, but even the thought of entering into litigation makes me want to crawl back into bed...

Which is to say, that your situation sounds very overwhelming.

I pass along to you the hug and chocolate (or is the chocolate just a female thing? )
Laura