A letter from a caregiver....

[PromiseSeeker]

This was written by someone who was a caregiver of someone with Fibromyalgia~ but, it could apply to anyone who cares for someone with an accute illness......

I am a spouse of someone with fibro.........

A lot of times we as family members, friends, and loved ones are supposed to understand, accept and be sympathetic to someone who has an illness..... and I agree with this statement, but only when we are given information, understanding and support ourselves.


Fibro does not just affect the person who has it.... fibro affects the whole family..... it steals away all of our lives. I have watched, broken hearted, as Ken has packed away his dreams and hopes for the future.... but along with those dreams and hopes were mine also. Just as you have come to realize that your life has changed forever so must we....... and we have to be allowed to morn that loss also.

We become angry and depressed just as you do...... we struggle with KNOWING that you are sick, to being angry that you are sick....... not at you but at the illness. Then we become angry at ourselves for feeling selfish and thinking of ourselves.... thinking of the added stress on our lives... the added responsibility.... the added guilt.

We have gone from a 50% partnership in this marriage, this family, this life, to sometimes feeling like I'm carrying the whole weight of it alone. I have to remember that my spouse is sick..... that the illness has taken that away and sometimes I'm lonely, scared, and extremely sad at the loss of what was....... but I also know in my heart that I love my husband more than life itself and TOGETHER we will find our way.

You have to talk to us.... you have to let us know how you're feeling, what you're feeling, and how it's affecting your day........ your life. If you don't talk to us we will never understand how you are feeling and we will assume that everything is as it should be.... thus expect from you what we have always expected.

I need to be able to say it's "okay" when your angry and hurting........ but it has to be "okay" when I am also. We both have to stop and look at what's going on in our lives at the time....... just as you get angry and lash out sometimes...... so do we.

So will we really ever understand what you're going through? ......No! Will you ever really understand what we are going through? ......No! But if each of us gives each other the time, love, and patience to find our own way in dealing with and accepting what fibro has taken from us, I think our relationships may be a lot better. I hope with your challenge that you wanted to hear the truth...... and that is what I offer in this.... how we feel as Spouses.

 

[symphonyb]

this was helpful this morning,my cousins son is autistic and is causing him so much stress.trying to understand him more and this helps.thankyou God bless!! I prayed for added comfort for all you are dealing with,Britta

 

[frogalone]

is anyone here??? I've been a single married person for 3/4 of my marriage, but since my husband's physical health has severely declined the past years, it makes his bi-polar condition seem much more difficult to cope with. I am soooo tired emotionally.

 

[~Nihilus~]

is anyone here??? I've been a single married person for 3/4 of my marriage, but since my husband's physical health has severely declined the past years, it makes his bi-polar condition seem much more difficult to cope with. I am soooo tired emotionally.

do you have other healthy friends to spend time with? i find that i get some rejuvenation when im around other healthy people

 

[Lucubratus]

Nihilu is right, Scooter - I work as a cargiver for 2 elderly/disabled ladies AND I have (low grade) FMS..how ironic the OP is for me....
But my circle of support is small IRL - so if that is the case for you - try some indulgences like headphones and music in the backyard, or take time to smell roses (even if its in someone else's front yard, like me....lol)
Do SOMETHING for yourself and DON'T feel guilty about it!

 

[frogalone]

At the moment, I'm not very good company. I'm not sure how well my anti-depressant is working. I went to a baby shower last night, but left very removed. My good friend is also going thru' stressful times. I watch her and she seemed almost as air-headed as I felt. Some of my issues belong in another forum. They just seem so inter-mingled. Plus, my sons are in those difficult teen years.

I try to take care of myself. I read to relax. The computer is my get away, except now that school's out, I share it with 3 other people. My husband has been this ill going on four years. Things are easier in some ways when he's hospitalized. I doubt if I really wish he'd take a turn for the worse, but it feels that way. He has three kinds of arthritis; severe vascular disease; now diabetis.

 

[~Nihilus~]

At the moment, I'm not very good company. I'm not sure how well my anti-depressant is working. I went to a baby shower last night, but left very removed. My good friend is also going thru' stressful times. I watch her and she seemed almost as air-headed as I felt. Some of my issues belong in another forum. They just seem so inter-mingled. Plus, my sons are in those difficult teen years.

I try to take care of myself. I read to relax. The computer is my get away, except now that school's out, I share it with 3 other people. My husband has been this ill going on four years. Things are easier in some ways when he's hospitalized. I doubt if I really wish he'd take a turn for the worse, but it feels that way. He has three kinds of arthritis; severe vascular disease; now diabetis.

illness can be very isolating; either people may not understand what we are going through, or we just may not feel good to interact with others; pain can sometimes distract us; you are definitely in my prayers

 

[Lucubratus]

what kind of anti-depressants are you taking ScooterMom?
I'm not totally discounting those things - but I believe they should only be taken when it is very very necessary. (your case sounds necessary) but those side effects can actually CAUSE depression. really look into the medication you are taking on webmd.com
this one quack wanted my Mom to take Zyprexa and when I looked it up, discovered it was not really FDA approved to treat depression, only SEVERE cases of manic and people with schizophrenia. It caused weight gain in excesses of 60 pounds and could cause diabetes.
something to think about it next time any doctor hands anybody a "chill pill" for sure!

the so called "harmless" Prozac can cause liver or kidney damage and people who take it are supposed to have their blood monitored. It is also addictive whenever you read any prescription that says "do not stop taking without consulting your doctor" - suddenly stopping a medicine like that can cause withdrawal effects that are very nasty.

*hugs*

 

[frogalone]

Paxil has worked realitively well for me.

 

[Lucubratus]

the lady I work for is on Paxil

 

[frogalone]

Here's a question, if anyone has had experience. how do you know when it's time for one to stop driving?

 

[super mom]

this helped me out quite a bit becasue my husbadn has severe rheumatiod and osteos arthritis and we have to small children (ages 2 yrs, and 8 months) it has taken a toll on me physically and mentally. i am at a loss as to what to do about it because i have no outside support system, no friends or anything of the like, i have not the time to go ut and look for friends and when i have had them they kind of drift away because i have to reschedual last minute because we can't see those surprise flare-ups until last minute and then hubby can't take care of the kiddos, and then to top it off the yougest is in and out of the hospital all the time because of a whole mess load of medical problems, at this point mainly his lungs and virus's don't get along, every little virus puts him back in the hospital.