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Anyone having trouble getting family to understand: just wanted to share.

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Posted 2/2/2011 5:10 PM (GMT 0)
I wanted to share an email that I sent to my husband today. After retracing it, I liked what I wrote and thought my email might help others compose a letter to their family members, geared towards their specific life but getting the same point across. It's long to bear with me:

Hi honey.
I'm having a bad day. A little physical, a little emotional "pitty party" day. The significance of my illness is really setting in for me. I'm starting to see/feel how it's going to control me.

The last few days I tried to go about my day as if I were working at a job. Getting up early, and only taking breaks if I'd be getting a break in a real work setting (ie: lunch and 2-15 minute breaks). Then continuing on thru dinner. The only thing I can see that has gotten me is a day of bed rest. I hurt so bad today I could cry.

I decided to make myself get a shower thinking the hot water would help. It did while I was in there. But my muscles started burning so bad from standing up that I had to sit. When Olivia got up this morning, the first thing she said was "what's a matter, mommy?". She could see the pain on my face. Do you know what that turkey did for me? She turned my heating pad on, pulled the covers back over me, and brought me the hot water bottle. Then she went and got herself dressed, got her own cereal, and said "don't worry about me today. I can take care of myself today. You need to rest." OMG!!

Ya know, I've felt better lately because I've been on the medicine and I haven't held a job so I've been able to take every day at my own pace. I'll get up and make the bed, break, empty dishwasher, break, take laundry downstairs, break, you get the gist of it I'm sure. Now that I've got myself in "job training mode" I'm scared. I'm scared I'm going to get to the point that I can't take care of myself. I'm scared that my memory is going to fail me to the point that I'll really screw up. Did you know I was filling out paperwork at the Drs office and I drew a complete blank as to which month this was. The first month that came to mind was July. What?!?  I just said to the lady "what is today's date??"

Anyway, I'm sure you are wondering why I am going on and on about this. Well, I guess for a couple reasons. One, I know you said before you wanted me to get a second opinion on this. And I'll gladly do it. But I don't see the necessity in that as my illness is textbook so far. Which brings another question to mind that I've been really wanting to know the answer to. And that is, have you REALLY taken the time to educate yourself with what this illness entails? So that you can understand what I am going through best you can, without having gone through it yourself? I read on my blog and so many women have family members that just refuse to understand, and treat them like crap emotionally, and reduce them to a feeling of worthlessness that no one should ever feel when their inabilities are caused by an illness which they can't control. Having this is no different than having cancer except it really isn't killing us, it just feels like it's killing us.

I don't want you to think, in any way, that im saying you are mean or not understanding. I feel you are to the best of your ability at this point. I feel some responsibility to myself and our family to encourage you to educate yourself as much as I have myself, so that you might become better intune with my mannerisms, and to know that there are some days that I thrive for you to ask if I'm having a bad day. Or recognizing that I AM having a bad day and show appreciation for what I HAVE gotten done instead of focusing on what I HAVEN'T. And having a better understanding yourself will help us work better together as a family unit with what we have. Which is a man (you) that can give 200% and a woman (me) that on many days can't give 10%, and child that often gives 50% but at her age should never have to.

One last thing. I said earlier that I am scared. And this is why. I'm a woman that has achieved a lot in my short life. I learned cosmetology. I survived basic training and got excellent scores. I handled the discipline in my military classes despite hating what I was learning. I was even able to graduate top of my class even though I was working toward a job that I now knew I didn't want. I served 9 glorious years in the air national guard. I was very respected. I was dedicated.  I was great at it. Even an expert marksman. I became a forensic analyst without batting an eye even though I was only trying to be a chem tech. I was so good that I was able to solve some of the most horrific crimes. Some of which made national news and are still being talked about today. Even helped send a few criminals to death row. I've read differentials and knew enough to aid in the diagnosis of cancer. A lesser technologist would have easily missed those. I've accomplished so many HUGE things in my short life. And I'm scared...  I'm scared because my mind was to keep on accomplishing huge wonderful things. And my body?? My body can't even get out of bed. Physically, I'm physiologically find. All systems are go. But mentally, this is killing me.

I'm sorry to have dumped all this on you. But it's been weighing very heavy on my mind for a long time. I needed to know that you understand what I've been going through.

Thank you for listening. I'm thankful for you, more than you could ever know. And me love for you grows stronger every day. You are such a big part of my world. Without you, I'd be nothing!

My love always,
Me
Posted 2/2/2011 5:52 PM (GMT 0)
Mrs. Mike that was an awesome letter. My problem would be my husband would never read it because he just doesnt read anything.

I hope your husband appreciates the effort you put into that letter.
Gentle Hugs
Shirley
Posted 2/2/2011 6:30 PM (GMT 0)
Mrs. Mike, it is good that you share your feelings with your hubby.
Years ago, I expected mine to be a mind reader and would be dissapointed if he wouldn't react...say or do things I thought he should. He understands pretty much now and is very supportive.

There are times though that I feel like I do try to spare him of info
that is worrisome regarding my autoimmune stuff. This last weekend, I recieved bloodwork info...my body is producing positive ANCA antibodies...so more than likely I do have a new autoimmune disease brewing against my vascular system.
I downplay it for him...he's been through alot with me and I don't want him to worry anymore than he already does. He is caring and goes with the flow.

My heart goes out to those who do have a difficult time getting support at home, and I keep you in my prayers, that you are blessed with strength and courage to get through your day.

Hugs, Robin
Posted 2/2/2011 6:54 PM (GMT 0)
Mrs. Mike,

Your letter almost brought tears to my eyes. Wonderfully put. This illness is scary, because we don't understand it, or know what it'll do next.

I feel sometimes that my hubby could understand more, too, though he's pretty good.

Debbie
Posted 2/2/2011 8:04 PM (GMT 0)
Mrs Mike, your post DID bring tears to my eyes. I just wrote a shorter, different version in another post. My husbands answer today was to go the gym and work out. Need I say more?
Posted 2/2/2011 10:03 PM (GMT 0)
Mrs Mike, that is a beautiful letter. Can I copy and paste it. lol
I am in the same boat as you, and nobody talks about Fibro. And yes, I was very active, and I know now when I want to do something, I think what will it cause. (pain wise).
The worse part for me,(and I think you), is our self esteem. I feel kinda like a looses. It takes so long for me to get out of my bedroom in the morning, its embrassing.

I think our husbands are great, but sometime you can just see the look on there face when we are in pain.

I know life goes on and everyone eles goes on, but us.
I hope you and me can find a comfortable place in life where we can just be happy.
Marilyn
Posted 2/3/2011 12:16 AM (GMT 0)
Hi, Ladies, Especially Denise,

My husbands reply wasn't much different than yours. His kind words were "You've been off work for over a hear. going back to work will be a big adjustment. If you find you can't handle it, then you can't handle it. At least you are trying"

THEN the kicker: "You need to start exercising more. That will make you feel better."

So the last statement tells me he still doesn't get it. If I sat around, not doing anything all day every day, I'd COMPLETELY understand the "get more exercise" statement. But I move. I move nearly all day long. By the end of the day, every day, I feel like I am going to drop. I have a 3400 sq ft house to take care of. It takes me nearly an hour to vacuum about every other day. And despite there only being 3 of us, we create mass amounts of laundry. I cook nearly 3 meals a day. Beds are made every day, dishes are always done. Garbage is emptied eveyr day. NEWS FLASH: That's exercise. I was on my hands and knees wiping up floors. That's exercise.

My reply to my husband is going to be: "I don't doubt for a minute that you will be understanding if I can't keep the job. You've been great with letting me stay home despite having no income to supplement (no SSDI, etc.). But what I want to know is that you've learned as much as you can learn without experiencing it for your self, what this dreaded illness is about. I want you to learn that what I go through, the pain that I feel, is very real. Very debilitating. When there are days that I can wake up at 6:30 am and take till 11am to get out of bed, I am suffering. I want to know that you understand as much as possbile, why that happens.

I don't know why I feel so strongly about him learning about fibro. Maybe it's because when he was having health problems, I learned as much as I could about what was wrong with him. I learned everything we could do to improve his health. I ran out and bought a juicer and I used to make him juice geared towards his symptoms at that time. And I think it helped. I want to know where my juice is!! :-)
Posted 2/3/2011 12:43 AM (GMT 0)
Ah Mrs Mike, I feel for ya even tho I don't have any kids.  I do have 2 dogs in the house and staying in bed is never an option.  Once I do get moving and have my coffee I go out to the kennel. 

 I do admit that there are a lot of days my big acheivement is cooking dinner and playing on the computer.  But there are days that I am busy nonstop with some breaks.  Hubby has me working all 3 businesses soon.  2 of them are keeping the books, I am not was never a numbers person, I have done it for 15 or so years to help him, the other is running a commercial sewing machine sewing straps. 

I had planned on having a huge garden and selling produce at the local whole foods flea markets, don't know if that will happen to that extent now.

Posted 2/3/2011 2:28 AM (GMT 0)
After all this, he didn't even ask how I was feeling when he got home. *shakes head*
Posted 2/3/2011 2:38 AM (GMT 0)
Mrs Mike, I am sorry that he didn't bother to even ask but HE is one of THEM (the male species).  I have always said THEY were different.  OK most of them, there are exceptions.
Posted 2/3/2011 4:54 AM (GMT 0)
I'm sorry he didn't get it about exercise. It sounds to me like you do an amazing amount!! Maybe he'll get there in baby steps, as they say....

Debbie
Posted 2/3/2011 4:35 PM (GMT 0)
I ask my Hubby to read up on Fibro and his reply was why should I read it when I'm living it?  UGH! 

 

Posted 2/3/2011 5:13 PM (GMT 0)
Nana, UGH is right! Living it? Not unless you're feeling it in your own body, you're not!

Debbie
Posted 2/3/2011 6:04 PM (GMT 0)
My heart goes out to you women.  It's like these men were never taught compassion.  I was fortuate to have a great husband that did help me and sometimes without my asking!  But, there were times I would ask and he would say "I will" and not move but I never jumped in and did it.  He said he would do it and I kept reminding him until he DID do it!  (I think that's called nagging!  tongue )  If I ever jumped in and did it, that would be what he would expect from that day on. 

 

Most little boys aren't taught to do things around the house.  They are busy being little boys.  Their "Mommies" did everything for them.  This happened with my husband, too.  I had to train him!  turn When I was first married, my husband would take off his underwear to take his shower and throw it behind the bathroom door.  He felt it was my responsibility to pick it up and put it in the laundry basket since his Mommy always did.  Yeah, right.  He didn't know who he married!  mad    I did it for a few months and then got very sick of it.  I told him I would only wash the clothes that were in the basket so he had to make sure everything was in there.  Well, he didn't believe me.  That undies pile grew and grew until on morning I heard him call my name in distress!  He had no clean underwear to wear to work.  I reminded him of what I said and he had to sort through the dirty pile to find the cleanest pair to put on.  Trust me, he ALWAYS put his underwear in the laundry from that day on.

 

Don't let these men run you ragged.  Marriage is supposed to be teamwork.

 

Sherrine

Posted 2/3/2011 6:19 PM (GMT 0)
I spoiled mine and I admit a lot os my own fault.  I was superwoman, did it all and I mean even cutting the grass.  He is a workaholic so it wasn't like he was sitting on his butt.

I also only wash what is in the hamper and have started folding T Shirts inside out and putting them away like that.  If he does any housework he makes sure to let me know the "favor" he has done. I hate that

Posted 2/3/2011 6:36 PM (GMT 0)
Oh wow Denise I can relate to being reminded of the favor he did thing. The other night I fell asleep on the couch. Hubby woke me up to go to bed. The next day he was like. Your Welcome. Im like for what. He said feeding the dogs their snack and putting them in there kennels. I told him if I was suppose to thank him for last night then he should be thanking me for every night that I do it. LOL
Gentle Hugs
Shirley
Posted 2/3/2011 6:51 PM (GMT 0)

I have to laugh at that Shirley!!! 

Thankfully mine takes my boy up to the kennel and lets the other 3 out and gives the horses hay every morning.  The hay just feel like it gets heavier every time I lift a bale.   LOL

Posted 2/3/2011 7:37 PM (GMT 0)
Lol.. Oh my!!

Well, I do have to say, my husband is a gigantic help. He'll help with all chores (except cooking dinner but that's because he doesn't want to be responsible for poisoning us :-D). What burns me is when he comes home and there's something that needed done (stain in carpet is a BIG example). I had EVERYTHING else done for the day. Even some extras (wiping up floors, washing out garbage cans, etc) and when he got home, the ONLY thing he focused on was the spot in the carpet. To the point he let his dinner (which I worked hard on) get cold. I wanted to stand there and yell "Is that stain going to burn a hole in the carpet if we let it go one more day??" and he just oooozed an attitude of acting like he thought I was lazy. Mean while, I had muscles on fire, spasms gettng revved up. He is the moodiest guy I know. In fact, men in general (based on my experiences) are WAY moodier than women. If I don't feel good, I still greet him with "HI, honey, how was your day *smile*??" If he doesn't feel good, I'll be lucky to get a "hi" back
Posted 2/3/2011 7:52 PM (GMT 0)
All the stains on my carpet are from him spilling his coffee......  My hubby focuses on certain things at times and then harps like an old nag, so I know where you are coming from.
Posted 2/4/2011 1:00 AM (GMT 0)
This one particular stain I am speaking of, I saw it on the floor when I got up in the morning. My daughter had been in my site the entire time so I know she didn't do it. And like I said, it was there when I got up in the morning so I didn't do it. When he got home, he said "What's all over the carpet here??" I said "I don't know. I had assumed you did it so I was going to ask you the same thing..." well, I guess someone forgot to remind me that my husband is perfect and he couldn't have POSSIBLY have gotten something on the carpet. And the coffee stains?? Don't get me started there!! :-)

On a happier note :-) I had my interview at the oncology practice. I'm 99.9% sure I got the job. I just think the supervisor couldn't give me the final word until she talked to her manager. She asked me which day I could start and kept saying "We need to get you on board quick because we have a lot of folks that need to take leave before they lose it" so as far as I know, I start on Feb 23rd. Which is right after my 2 week vacation in Florida with my parents. I will enjoy myself SOOO MUCH MORE knowing when I get home, I'll have a fresh start on my hands, some income, money to pay for my daughter's school. And it's PRN so I could work 5 days a week if I wanted but she said "You work when you want to, and when you can" Of course they are going to low ball me on the money but what they've offered intially is a lot more than NOTHING :-).
Posted 2/4/2011 1:11 AM (GMT 0)
Yea great news about the job!!!

Ya know, when one of the dogs absolutely can't wait in the morning I quickly get the rug scrubber out and go to work so he won'k bitc*. 

Posted 2/5/2011 6:50 PM (GMT 0)

Thank you so much for your candor and honest feelings of powerlessness. I love someone who has lived with Lupus and Fibro for decades and even though she tried to tell me about her guilt and her fear I couldn't feel it. But you touched me in my soul with your letter. I finally got what she has been trying to tell me all along. The harder I tried to be included in her disease the more she pulled away because she felt manipulated and controlled not loved and loved is all I was trying to do. I don't know how to love her, but I want to learn. My eyes are so open and my heart is aching because thanks to you I know that I did everything wrong in terms of supporting and loving her. I've joined this site and linked it to my FaceBook and Twitter accounts hoping that I can help others who just don't get it like I didn't get it.  Thank you again. I hope it isn't too late to save my relationship with this beautiful woman my angel. Tammy

Posted 2/5/2011 7:48 PM (GMT 0)
wow,Today is my first visit,and yours was the first post I read. I am recently diagnosed and the onerwhelming terror I feel as I feel my memory slipping from me at times feels like a death sentence.
I am so sore,so very very tired and frustarted and just felt like no one could possibly understand until I read this.
Thank-you
Posted 2/5/2011 8:16 PM (GMT 0)
Tammy,

It's really strange but that letter just came to me in the blink of an eye. The words just "flowed" from my finger tips and when I went back and re-read it, I thought to myself "Wow... those are the words I've been looking for all along."

My husband still doesn't get it. And I don't expect him to get it for a long time. And I'm learning that it will take work and dedication on my part to help him "get it" some day.

Now that I reflect on the letter that I wrote a few days ago, I think the reason the words came to mind is because I was thinking over and over again how the scenario of my going back to work on february 23rd was going to play out. Or HOW it could play out, rather. I had to tell myself (and have to keep telling myself) that there is a chance I could fail. Then after realizing there's a chance I could fail, I thought "Man, this could lead to some serious tension between my husband and I - what can I do to avoid that? How can I be proactive about this?" THEN... it got me to thinking about "Why was it so important to me to realize now that I could fail at this..." and the reason is, I don't know fully what it's like to fail. Yes, I did leave a high level/high stress job and I only lasted 4 months at it, but guess what? The girl before me (who was with the company 20 years before landing this position) only lasted 2 months after she got the position. So, I understood that it wasn't just me. There was something wrong with the way the position was layed out. The girl that took my place works 14+ hours a day, has no family, no kids. There's something wrong with that. But if there was a perfect person in this world for that position, it would be her, a person without a life otherwise.

If I had advice for you on how to act around her, I'd say try to learn and recognize when she's experiencing extra pain. Try and let her know you see this and it's OK to let you pick up some of the slack. But on the flip side, if you notice a day where she seems extra energetic, bubbly, happy, make the best of it. Maybe go out to eat, take a walk, do whatever it is she enjoys doing. Make the most of that day. (But don't over do it or she'll pay dearly for the next several days). Don't ever tell her "It could be worse, you could have cancer" cuz she'll just think "Well, if I had cancer, there might be a chance I wouldn't have to suffer as long..." (I know those words are as harsh as can be, and please don't think I go around wishing I could die but on the days when I have my worst pain, don't think the thought of dying hasn't crossed my mind.

Wow, I am getting pretty deep :-). Anyway, I think often about how I could become an advocate for fibro. If I've heard it once, I've heard it 100 times "You've got to be your own advocate..." Well, if we all got loud enough, maybe one day we wouldn't have to be such self advocater's (Am I even using the right word??). My dad has alzheimer's. And guess what? There's no test to diagnose alzheimer's until after you die, at autopsy. And people swear that that's the reason there isn't as much faith/belief in fibro, because there's no "test" for it. You can't walk out and say "well, I've tested positive for fibro" like you can for HIV or cancer, etc. But I don't see my dad getting any resistance with his diagnosis. I've never seen someone roll their eyes like I'm making an excuse for him when I've said quietly "OH, he has alzheimer's" but I see people (my husband included) with that look on their face when I drop the word fibro for the reaason I didn't or can't get something accomplised. Like "Here we go again... she has fibro... rather lazy-itis"

Anyway, I've got to babystep it through the rest of my day. I'm not feeling my worst, but I'm not feeling my best either. My best day isn't due till the second tuesday of next week :-).

Good luck to you Tammy. You'll learn. For starters, let her know you don't understand and maybe she won't be so resistant to help you understand. Fibro is a strange beast. And there are days that I am so depresed and withdrawn I don't want to talk to anybody. So, if you ask her to help you try and understand and she growls at you, just back away queitly and no one will get hurt :-). Feel free to post as often as you like. Ask what you like, no matter how personal it is. I guarentee one of us has been through it. And always feel free to just type and vent. I love reading the posts when someone is just venting. It goes on and on (much like this one..lol) and often makes no sense at all...but I guarentee that person feels better... and I hope you will too. Take care!
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