Setting boundaries

Think of your health first. If you come off like a monster, so be it. People will get over it. But being your brother is skeptical about fibromyalgia, telling him you don't feel well at times might not be enough. Just stand firm to your ground and don't let anyone make you feel guilty about it.

I hope you have a good day. I would make sure he accommodates you on your day off. Best wishes...

Hugs, Karen...

Thanks for the input. I tend to feel guilty if I come across strong or firm. Like this is how it has to be... It helps to hear suggestions. What sort of responses have you gotten from family? Did they ever learn to adjust to your boundaries?

I talked , with partial input regarding the situation, to my mom. We agreed that we will do something the Saturday I am off. If the brother and wife "can't" go, (and reneg in other words), choosing another day (hopefully), then I won't go that day. Mom wins either way. She might even get two outings. When they come, I'll be "sleeping" (to avoid my losing it in front of them).

What I'm noticing... The people with more money whine the most about not having any. The people with more time, aremost well, and are the most preachy about their respective religion, are the least understanding and empathetic. I don't have the energy to try to relate to this.

Befuddled and trying to find the calm. I decided to set up a place in a room that is my go to meditative spot. I had this at my house before moving. It's been so extra hard adjusting since the move wasn't as expected, with dramatic changes. I had planned my support system to a degree. I know I sound crazy here. Thanks for listening. Regrouping money wise, housing wise, friend wise, and job wise is really hard!

T

Tango, if I read this correctly, you spoke with your brother first and you two decided on a date. THEN you took the day off. So, he can run it by his wife and hopefully it will work out but let him know the date you BOTH chose is the one you will use for your Mom's birthday...since you took the day off after you had spoken to him. You can take her out to dinner or a movie...anything special that you two don't do often. Sometimes one on one is best and you won't be too tired either.

Stop worrying about it. The date has been chosen so go with it. I find if I try to map things out ahead of time I get very frustrated because I'm a perfectionist and most of my family isn't. It seems I'm always waiting for someone. For example, I map out meals a week ahead of time. They decide about a half hour before they are going to eat as to what will be on the table. I can't function that way and you probably can't either because we have to pace ourselves and not rush through anything.

No matter what happens, you will celebrate your Mom's birthday and that will mean a lot to her.

Sherrine

Thank you everyone, this is a good discussion. While I'm fairly irritated, and I feel I am being disrespected, I still have to find a way to deal with it and find a way to work on preventing th se types of things happening. I think I've always been easy going, rolling with plans, and frankly quote a pushover, and that's what people expect. Even if I am saying something (my needs and boundaries), they have to see it in action. I guess when we have to start building boundaries, people don't expect to follow the newness.

My, I hear what you are saying, yet I need them to give me the benefit of the doubt and I am going to begin expecting it. I've given them the benefit of the doubt in the last, countless times. In a sense that comes across as rude, but well, so be it. They are not bad people: yes I love them. They are very chaotic in planning, so I am going to have to be more prepared to deal with that. Yup, Sherrine, You are probably right. I'm obsessive. I've been trying to explain my "bank of energies" (I only have three 20 dollar bills for the day. Hers how I need to use this to get through the day. Doing more is overdrawing.) LJ, I hear youM). Nobody seems to get that. I'm perplexed. They don't seem to have any trouble telling me what they want to do or not do!!

So I think I am just going to to stop talking about it.

A case in point .. Just tonight, my brother made plans to take my mom out to lunch. That's wonderful! But guess what! They just assumed I would be home to babysit my dad while they go! I asnt even a part of the conversation! I overheard this and pressed. They just assumed.... They've been doing this repeatedly on other things... Make decisions that effect me, and don't bother to talk to me. I felt kind of rude, but I said I had plans... Which actually I do. If they had asked, I'd have modified my plans, but I have to really be firm or this will keep happening as it has.

Sometimes I feel like a worm that is asking the big shoe not to step on me! I gotta turn into a big kitty. Meow. Saunter away. Purr if contented. Hiss and growl if I might get stepped one, even if as an oversight.

I need my own place... Just can't afford one yet.

T

Thanks medfree,

Guess what. The guilt trip games have begun...

Wow. To think something as simple as "include me in the conversation if your actions or decisions will effect me."

You'd have thunk I threw dynamite in the bonfire.

I was so reasonable and thoughtful in the conversation last night. Now my mom decided to take my dad to the brunch and indicated in a sweet little child like voice how I could stay home (telling my dad that I basically wasn't invited)

Now I'm mad! Wow. I gotta figure out how to manage this. Because if I express the anger, then that will then be the focus of conversation, not their initial disrespect. Not as bad, but reminiscent of the cousin stuff. Why is expressing my needs, and expecting reasonable follow up so hard!!! They have no problems saying no to me about stuff. That's the worst part.

Now, I'm getting links from the sister in law, release your toxic thoughts, find Jesus, and you'll be cured kind of stuff.
I'm feeling like my only true friends are those who suffer from disabilities or chronic conditions because they are the only ones getting it.

Medfree, it's the lip service. But they really do not get it. I feel like a sucker. I glossed over the invitation to church to visit the prayer room for healing....

My brother, the avid church goer, has no trouble setting boundaries. He told me that he refuses to come cut the grass for my parents (93 and 83) because "if they have to do it themselves, then they will be more motivated to move "....

T

Tango, first of all, no one can make you feel inferior without your permission. You are strong...stronger then they are...because you live with chronic pain. You know they will react this way so don't get upset. Just consider the source.

Secondly, I have been a born again Christian for 38 years and haven't been healed yet. I've seen some healings but it hasn't happened for me even though I truly believe. But you know what? I have peace and joy...a lot more than many healthy people...and having my inflictions not only have made me very strong but also have given me the opportunity to help others. So I consider this a huge blessing.

Just smile and be kind to them. That is the Christian thing to do. Ignore their silly statements and take a deep breath when you feel anger rising. Their actions can make your pain worse. Instead, smile and change subjects. If that doesn't work you might act like you are listening to them but really be thinking of something completely different...like what your plans for the next day are.

Don't let them get to you like this. It's not worth it. You are the one who will pay the price. They just don't understand.

Sherrine

Hello Everyone,
I am going to cut and paste a letter that you can use for a template. I created something very similar to this after my first year of surviving fibro. I could not "talk it out" as my family especially, and some friends, just did not understand my invisible pain. They also felt that if I just did A,B or C that I would heal. HA! The conversations of unrequested cures and expectations were exhausting; I was already exhausted. This letter is much nicer than the one I wrote in my first year (that was 15 years ago and I did not have the toolkit I have now).
Yes, some took offense, but most backed off. Many finally understood what and why I was now a new "me". I have found that the people I desire to have in my life are the ones who are compassionate to take the time to listen to me; as I, listen to them. With family, this becomes very personal and much more difficult. There was a period of about two years where my younger brother and I did not speak much. He adamantly did not believe I was in the amount of pain that I was in, and he thought I should just get going. We speak now and he does his best to understand what he doesn't :).
Tango, I sincerely hope this, or something else helps it all to ease up. I would be so wiped out by these interactions with my family.
Dear Ones,

I know all too well that I have become a different person. It is not in my head, it is in my body. I struggle to survive and live well with this chronic pain. Some days I am able to be joyous, other days I can only stay in bed or on the couch and be furious while my body is in screaming pain. All of these days, I am hurting. It is only the degree of pain that differs. My pain can change frequently. I might wake up in the morning feeling alright and by that afternoon be unable to do anything more. It can fluctuate from minute to minute, or it may hit me all at once. What I need from you most is to know that, despite my irritation at new self, my unintended lashing out at random, and reasonable daily life activities, or at you what I am really angry at is my pain, not you. I am so very sad about all those activities we once shared but now frequently must cancel at the last minute. Worse than that is when I have to let go of those special times we treasured. I am not only missing out on these activities, and our bonding time, I feel overwhelmed with loss and guilt.

The person you care about is still in here. I get buried from constant pain that moves around body. I get frustrated because my brain frequently forgets the simplest of things like returning your phone call. I beat myself up because I am have too many days when I can no longer accomplish the most basic of activities; work, cleaning house, driving, shopping, keeping track of pre-planned outings I scheduled, and so much more. I become lost in grieving, feeling shame and guilt.

I want you to know that while I appreciate your desire to offer me a cure, it is my choice if I try to use it. It is still my body and I still understand my needs. I will know if it is something I feel will help me. Perhaps it will help later on. If you want me to remember the procedure, ask me for my journal and write down the information in my section labeled "medical" using simple but complete information on where to find it later. Then, let it drop away from our conversations. Please don't push these ideas at me. I get angry because I too am frustrated that there is not "a" cure for me. I am working at my new pace. I really am trying to find methods for my Wellness plan, one that allows me to be myself, instead of remaining hidden underneath my pain.

My self-esteem is at an all time low these days. I work as hard as each day allows to feel normal again. There are days I am a successful normal and there days when all I feel is failure. This is not your fault. This is not my fault. This is fibromyalgia. I am not suffering from depression, but I do have depressed days. Please do your best to understand. If you just can't tolerate me during these days, know that I understand, that I am not upset and won't be angry at you later if you need to leave. When I feel sad it helps me more than you know if you perform acts of kindness; send me a humorous email, make me cup of tea or just tuck me into bed. There is no talking me out of this mood, it will only cause more grief to us both. Acts of kindness help me to unbury my esteem as they remind me that "I" am still worth caring about.

I care about you all. I am trying every day. I hope to find methods that will increase the happy me and decrease the sad me. Try to remain patient and compassionate. I know better than anyone that tolerating this new person is difficult. Taking the time to understand my invisible syndrome helps us both. If you don't understand, feel free to ask me about it on my better days. There is very good information on fibromyalgia on the internet or in books. It is important to remember that like all chronic illnesses, they have similar symptoms but just as we are all unique individuals, the predominant features of my chronic pain will also be unique.

With love,

(insert your name)

Update:
I received a request from Fibrotoday.com to post my letter :) :)!
I went back and noticed a lot of word errors :(. I changed many mistakes and added even more simplicity in explaining fibro to others. I won't repost but soon you can find it on the site above.
This is another new outlet for me, writing to share with sites online. My brain is still fairly offline from post concussion syndrome but I reread and reread what I write. Getting there.
Have a fun and gentle weekend everyone

Thank you almostmedfree. My letter definitely needed wordsmithing! I have done that now, but yes, it was a compassionate way to allow my family and friends to think about this new, fibro lady.

It is worded as very me, but, general as well. At the time I had pain deep down in my muscles everywhere; life was just impossible. Everyone had their answers and their disbelief at this invisible pain. It just wore me out even more than I was before. Tango reminded of all the small and large insults that even well-meaning relations heaped on me!

I know live Well, accepting my new me and my life. I rarely have those depressed days, meaning really upset and tears, but in the beginning they were common.

I hope Tango is able to resolve her issues while keeping relations intact. Like I stated above, my brother and I now have relations but they are not the same as prior to fibro. He just doesn't understand; despite his times of multiple factures in ankle and more. You see, he was able to complete PT and his life went right back on track. He believes there is some magic PT for me as well.
:)

Hi all,
I'm awake, but not standing. The cold is diminishing but knocking my socks off. The only plus is, strangely, since my head is stuffy my sensitivity to sound is eliminated. I told my mom that and we had a good laugh because then she didn't have to be concerned with me cupping my hands over my ears during a morning conversation, if dishes clanged, or the phone rang. Weird stuff, eh?

Lucinda, interestingly, I had found a letter on the Internet with a similar flavor and I had sent it to my brother last week. I received no response to it and he's been nearly silent ever since. Other than my sister in law's little video link sent to me, attesting to the power of positive thinking, prayer, and how that cures all these illnesses, I've heard nothing from them.

In a fit of curiousity, I did some research on their church. I was blown away. It's a part of this large mega church movement that's getting a lot of attention. There are dozens of links, videos, and warnings to it being a cult, headed under <name>! There is some super creepy stuff, a "Supernatural Ministry", the "apostle" leading them is followed by angels, it rains feathers and gold dust during his services, and so on. Claims to healing, like legs growing longer, etc. family members losing contact after a loved one joined.

Now I know more about what I'm up against. But that's just it. I'm throwing in the towel and not equipped to take on this challenge. I'm backing off completely. The really scary part is at one time we had a discussion about when my parents have to move, or one passes away, that "they'd be there to help, and we'd work together and not argue." I have decided to prepare myself for the possibility that nearly all the care will be on my shoulders. If they pipe in, wonderful! But I am taking inventory of all services out there available. I requested from my mom, a list of all good friends of theirs who have lended a hand before. The last time my dad was in the hospital, they visited on the third day for about an hour. They live twenty minutes away. (I remember feeling puzzled, but didn't say anything.) So much for being there....

I'm just going to accept them where they are, smile, like you said, Sherrine. We've had some nice times together. Just accept the little things. It's a strange world we live in...

Thanks for the input! I'm putting a lot of things things in my journal and slowly, ever so slowly, building that fibro toolkit. One list item to add, "expectations to let go of", and next to it, "replace with": a yoga pose, (or similar thing).

T

Tango,
You got it lady:)
You now know its not you, but them.
Sherrine's advice is perfect.
I am glad you found another letter. There are many out in cyberspace, I created mine to just heap in lots of compassion and love; many have more anger flavot.
Keep on doing your yoga pose.

We are living in strange times, give us the " wisdom to accept the things we cannot change"

I know my sister will never change, she will not apologize even when she knows she is dead wrong...i feel sympathy about that.
I believe in aplogizing : )
I am strengthened not weakened by knowing when i am wrong..

We all sure wish for your situation to improve, and for you to be able to handle it as it comes.

The feathers and gold dust made me laugh..wow , but yes its not really funny..

Take care