When they don't understand

[1sweed]

Trellum,
Writing in a journal or diary is a wonderful idea and way of coping. In a way that is what your doing here, just without the personal details. My counselers often encouraged me to write down my feelings and get them on paper and out of my head. And it does help a lot. And you know we are your backup support system, when nothing else works.

I just have learned to grin and bear it, and keep pushing forward in some cases and relaxing as much as possible in others. It does make you stronger when you figure out it is you against the world and things that need done, well someone has to do it, so just do the best you can manage and let everything else slide until you have more time and energy.

 

[Trellum]

Thanks Trellum. Yes, in fact we had quite a heated discussion about it. He had put a lot of effort into making sure we were in a location where I could get to stores easily, and where there is a sauna and hot tub and even hot springs while they all ski, so it's not like he was completely thoughtless. It's just that he didn't think anything about the condo itself and then refused to call them to ask, and when I googled it, it turned out to be the "opposite of accessible" and the worst possible one where we are going - stairs into the building, stairs (no elevators) to the 2 bedroom condos, and stairs within the condo to the bedrooms. Stairs to the restaurant. Stairs to the hot tub, laundry... There ARE other places in the area that really are VERY accessible. If we have to, maybe we can move.

Also for some reason he's really embarrassed about it. He lies when he has to come home to deal with kid stuff when I really can't get around/drive. I used to do triathlons, ran a LOT, was really active. Now I can barely walk a mile to Starbucks on good days, and I hurt after. BUT it's been coming on for YEARS so it's not a surprise, except that it progressed so much in the last 6 months. Urg. We've been to counseling about it...I think we need to go back.

Woah... I hate stairs too! My relatives place have stairs that lead to the bedrooms. So I had to go up and down those stairs quite often, it was so hard! They couldn't understand why I was struggling every time I had to go up (specially up, because going down wasn't that hard). So yeah, I can totally relate to your predicament here! Stairs are so tiresome and can't imagine having to use them to get from one place to another! Inside the building! But at least you can move to a more accessible building, that's great!

By the way, sorry to hear things have gotten worse for you in the last 6 months, things have gone downhill for me in the last few months, now with new symptoms. But don't worry, you can always try counseling, I heard it really helps (when everything else fails). It wouldn't hurt trying that again

 

[mariposa]

I guess you can't expect people to truly understand what you are going tru, specially if they aren't or haven't gone tru something similar. I guess I will have to learn to cope with this on my own.

I'm so sorry to hear that your relative was disappointing in his reactions. I suspect he doesn't even have a clue how hurtful things like that are. I hope that your trip, minus this dude's lack of people skills, was a good one. I thought of you yesterday as I was returning from my own trip... I'd remembered that you mentioned here at the forum that you were concerned about the fibro staying under control.

I think you're right... even people who are sympathetic really can't know what something is like without having experienced the same.

 

[Trellum]

Hi Mariposa! Nice to hear you traveled recently as well! Where did you go? If you don't mind me asking ?

Don't worry, I don't mind about what happened there anymore. It was disappointing, I admit it, but it was good to see I can't really count that much on this person...at least not when I need some comforting words, lol. My trip was good, I did feel very tired and had such a hard time going up and down the stairs, but apart all went good My relatives invited me, they knew I didn't have a lot cash, so they helped me with some, so I ca't really complain. Sadly it seems the food gave me a really upset stomach!

 

[Trellum]

Trellum,
Writing in a journal or diary is a wonderful idea and way of coping. In a way that is what your doing here, just without the personal details. My counselers often encouraged me to write down my feelings and get them on paper and out of my head. And it does help a lot. And you know we are your backup support system, when nothing else works.

I just have learned to grin and bear it, and keep pushing forward in some cases and relaxing as much as possible in others. It does make you stronger when you figure out it is you against the world and things that need done, well someone has to do it, so just do the best you can manage and let everything else slide until you have more time and energy.

Thanks a lot Right now I'm dealing with a lot things, but sadly no time to write on my diary anymore I loved writing there in the past, because I could cover every single detail, but now there isn't enough time during the day. I'm just happy I'm capable to find some extra time to be around you guys, coming here has helped me a lot! I really appreciate the comforting words and support

I love the way you see life and the obstacles. I recently learnt I might be pregnant and I find your words to be so relevant! I have no idea what I'm going to do if I am pregnant, but I know I have to do what I have to do in order to move forward in life. It's not going to be easy, but this is how it is Completely unexpected and not planned at all, hopefully I am not, but we will see. I will keep you guys posted!

 

[exploreandrespawn]

This just makes me so angry. You know, I was on a chatboard, and this guy started up a conversation, he said he was a doctor. We got to chatting about health issues, etc. He tells me that he believes that CFS and Fibro are fake, he does not believe in them and says that people that have these conditions are faking it for public aid money. I was SO UPSET, but held myself steady, so see what else he'd say. I learned that day, that anyone with CFS and Fibro are really suffering. Not only from pain, but from all manner of social stigmas, ruined relationships, waking up one day, and finding out that the person who swore to love you during your wedding ceremony, is not ready to leave you, because of what happened to you. You know? I think it's imporant for people to visit (meetup,) and find a group in your area. Meetup has a lot of support groups in every state, there might be one near you.

Do a websearch for this place.

 

[onsecondthought]

I've run across so many nurses and doctors over the years, who wrote me off as a neurotic and a nut, even after I'd been diagnosed by a rheumatologist. It was stressful and humiliating. I have unsympathetic family members as well that don't believe it's real, or that I'm looking for sympathy or something along those lines. You will always find those kinds of people no matter where you go. Just keep keeping on, and surround yourself with those that do care. It'll go a long way!

 

[LLM1]

You're welcome 1sweed! You sound like a really strong person and an example to follow! I will try to be stronger and be my own support system. I once heard about being ones support system, but I thought it was silly, lol. It doesn't sound so crazy now, not at all.

I guess I better start writing a diary or something like that, so I at least can take (off my chest) all those things that overwhelm me on a daily basis. Because it seems not many people nowadays are willing to listen, let alone understand and at least say something encouraging. It would be great to have a support group for people like us where I live, or at least a support group for people who suffer from chronic depression. That would be excellent, similar to the AA program (my mother attends the EA meetings). I truly need to stop depending on family and relatives this much, I need to find support and strength within myself.

My husband is a really nice guy...but it is still almost impossible for him to truly understand...and be the support i could use..i do not find men to have a natural nurturing gene like we do..and boy with fibro we could use the nurturing and encouragement.
Also i have friends who have fibro and they do not speak of it..as though ignoring the topic..is helpful..i guess its their way of coping..but talking helps me..sharing ideas and what to try next....
My sister has been through a dramatic health issue this year and has not had fibro pain since? That sounds strange..although hers was more restless legs than horrible pain issues...
I saw my dr ..this week and he discusses some of the fibro meds but that the side effects are usually worse than the help received. Since i am so sensitive to medications i do not take those..i do take anti inflamatories..which i can not function without, 1 dose of pain med spread throughout the day, and topical pain relievers.....i also get physical therapy about once a year..my hip muscles sometimes tighten up which makes me walk funny and pt really helps get that worked out... My hubby wanted me to go to florida soon with adult kids..and after the winter i had..i need to be spending the time trying to get things on a better path..traveling is very hard with chronic pain..i said..look at me..do i look like i feel like a trip right now? He knows i don't..but thinks i can ignore it...lol .. I wish

 

[apike]

I have been feeling so depressed lately, I just came back from Europe (I was visiting family). I had a great time and everything, but a family member in specific made me feel a bit down. I thought this person really understood how bad things were with my health, but it turns out this person doesn't at all. This made me feel so down, because I thought this person really did and that made me feel much better

I guess you can't expect people to truly understand what you are going tru, specially if they aren't or haven't gone tru something similar. I guess I will have to learn to cope with this on my own.

I was also told by this person he didn't like to talk about the topic at all I didn't even talk about it that often! And I didn't really vent with him or anything, just made some comments on it in the past, but apparently that was too much for him. So this forum will be the only place where I will vent now on

I know how hard that is. I feel guilty when I complain. It makes me feel so bad. When people don't understand how painful it can be, they tend to not want to listen because I guess they just don't know what to do. I'm really sorry you feel like you can't say anything. Believe me, my family jokes about it with me saying that I always say I don't feel well, but...I don't! I know they are joking but it still makes me feel terrible so I try not to be very vocal about it. At least there is this forum that you can come to because there will always be people here to listen. Everyone here knows about pain and not feeling well. Don't let it get you down too much.

 

[Trellum]

Thank you so much, apike! I can totally relate to having to bear those jokes that seem so innocent for them, but always end up hurting our feelings one way or another. Just today my SO made a joke about me getting one of those mileage cards when you travel often by plane with the same airline... he said: ''wow, if only they gave a similar card for going to the doctor...''. Yeah, implying I go to the doctor too often... I felt so hurt and bad, because as my partner he should be more understanding!

Ah well, it seems there are a lot insensitive folks out there! Glad to have you guys! This forum has helped me in sooo many different ways!

 

[Trellum]

My husband is a really nice guy...but it is still almost impossible for him to truly understand...and be the support i could use..i do not find men to have a natural nurturing gene like we do..and boy with fibro we could use the nurturing and encouragement.
Also i have friends who have fibro and they do not speak of it..as though ignoring the topic..is helpful..i guess its their way of coping..but talking helps me..sharing ideas and what to try next....
My sister has been through a dramatic health issue this year and has not had fibro pain since? That sounds strange..although hers was more restless legs than horrible pain issues...
I saw my dr ..this week and he discusses some of the fibro meds but that the side effects are usually worse than the help received. Since i am so sensitive to medications i do not take those..i do take anti inflamatories..which i can not function without, 1 dose of pain med spread throughout the day, and topical pain relievers.....i also get physical therapy about once a year..my hip muscles sometimes tighten up which makes me walk funny and pt really helps get that worked out... My hubby wanted me to go to florida soon with adult kids..and after the winter i had..i need to be spending the time trying to get things on a better path..traveling is very hard with chronic pain..i said..look at me..do i look like i feel like a trip right now? He knows i don't..but thinks i can ignore it...lol .. I wish

Awww, sorry to hear you can't tolerate meds well! I suffer from the same thing, that's why I only take the meds that I believe to be truly necessary. Because as you said meds come with a lot side effects, some are worse than others tho...

Take as an example the pill I was on for almost two years: Diane 35. That tiny pill increases our risk of getting different types of cancers. So I decided to get off the pill some weeks ago because of an incident I had no control off... Tough decisions!

Sorry about your husband, they find it hard to understand because they have no idea what is like. I can't blame them tho, because if it wasn't because I suffer from chronic pain... then there is no way I could possibly understand what is like.

I truly hope you feel better soon and go to Florida

 

[Trellum]

My husband is a really nice guy...but it is still almost impossible for him to truly understand...and be the support i could use..i do not find men to have a natural nurturing gene like we do..and boy with fibro we could use the nurturing and encouragement.
Also i have friends who have fibro and they do not speak of it..as though ignoring the topic..is helpful..i guess its their way of coping..but talking helps me..sharing ideas and what to try next....
My sister has been through a dramatic health issue this year and has not had fibro pain since? That sounds strange..although hers was more restless legs than horrible pain issues...
I saw my dr ..this week and he discusses some of the fibro meds but that the side effects are usually worse than the help received. Since i am so sensitive to medications i do not take those..i do take anti inflamatories..which i can not function without, 1 dose of pain med spread throughout the day, and topical pain relievers.....i also get physical therapy about once a year..my hip muscles sometimes tighten up which makes me walk funny and pt really helps get that worked out... My hubby wanted me to go to florida soon with adult kids..and after the winter i had..i need to be spending the time trying to get things on a better path..traveling is very hard with chronic pain..i said..look at me..do i look like i feel like a trip right now? He knows i don't..but thinks i can ignore it...lol .. I wish

Sorry to hear about your husband, my boyfriend is also a good guy, but just clueless when it comes to me feelings and needs sometimes. I often feel like I'm some kind of burden or someone who needs some extra support and care and that's something I don't like, because it makes me feel oh so vulnerable!

As for side effects... I hear you! I was on a medication that can potentially increase my risk of getting different types of cancer, been using it for two years and half. I stopped tking it one month ago... I hope I don't suffer a mega shed!

Best of luck with everything! I hope you can travel soon to Florida and remember... isn't really their fault that they don't understand. It's just they have no idea what is like to be suffering from this Thinking of that always makes me feel better!

 

[Trellum]

I've run across so many nurses and doctors over the years, who wrote me off as a neurotic and a nut, even after I'd been diagnosed by a rheumatologist. It was stressful and humiliating. I have unsympathetic family members as well that don't believe it's real, or that I'm looking for sympathy or something along those lines. You will always find those kinds of people no matter where you go. Just keep keeping on, and surround yourself with those that do care. It'll go a long way!

Thank you It sounds like you have also had a few run ins with doctors and nurses! I've had plenty of them as well, I just had one on Wednesday when a so called doctor said my massive hiatal hernia (that is blocking my duodenum) doesn't require a surgery even tho is causing all sorts of incapacitating symptoms. Glad the nausea is gone!

I hope we find people who care soon, at least nearby, because I know there are a lot people who care in this forum and for that I feel so grateful

 

[Trellum]

This just makes me so angry. You know, I was on a chatboard, and this guy started up a conversation, he said he was a doctor. We got to chatting about health issues, etc. He tells me that he believes that CFS and Fibro are fake, he does not believe in them and says that people that have these conditions are faking it for public aid money. I was SO UPSET, but held myself steady, so see what else he'd say. I learned that day, that anyone with CFS and Fibro are really suffering. Not only from pain, but from all manner of social stigmas, ruined relationships, waking up one day, and finding out that the person who swore to love you during your wedding ceremony, is not ready to leave you, because of what happened to you. You know? I think it's imporant for people to visit (meetup,) and find a group in your area. Meetup has a lot of support groups in every state, there might be one near you.

Do a websearch for this place.

Thanks a lot for the suggestion Sadly there are no support groups (at least not a specific one) that focuses on fibro There is one that focuses on depression, my mom goes to that one, but I don't like the atmosphere there. I might wait to find one if I move to the Netherlands.

As for that doctor... wow! It's so easy to talk and bash someone when you have no idea what is like to suffer from this! What a moron! Would have to have a guy like that as my GP, but I guess many of us here have run into doctors with a similar thinking, just sad Why is it so hard to believe fibro is real?

The pain caused by fibro is so real and you are so right, fibro is one of those diseases that can make it of break it in your relationship Sometimes I think my boyfriend will stay until the end, but other days I just have my doubts, specially if things get worse... and they might later on...

Thanks a lot for taking the time to reply

 

[TomRalphio]

Ah yes everyone has a family member like that. Luckily you can come here and let loose and really say what you want!