An Open Letter to My Family

Top 2. Apr 3, 1998 10:32 AM

» Jausten - Wanda, I would hope so, but sometimes the letter has to be re

Wanda,

I would hope so, but sometimes the letter has to be reinforced by our actions. This letter is posted on the refrigerator, and if need be, I'll have to place it on the kitchen table again. Really being listened to and heard is a precious gift that not all people can give, but hopefully some people besides those of us with chronic illnesses can learn to do just that.

Jausten, aka Cynthia

Suite 101 Contributing Editor: Fibromyalgia

-- posted by Jausten

Top 3. Apr 4, 1998 10:35 AM

» LindaB_2 - Cynthia, A hard hitting letter that I am sure caused you mu

Cynthia,

A hard hitting letter that I am sure caused you much pain to write. At times it seems we must hit our loved ones over the heads to get them to hear what we are saying.

I just got done telling my son that the tendons in both feet must be repaired and he turned right around and asked if I were going to get my granddaughter for the night.

Geez!! I would have liked to shook him and say, "Did you listen to me?"

I have noticed when they hurt it is the worst hurt in the world but when I hurt it is just mom and she can handle it and still go on.

I often feel guilty for not being the same person I was 5 years ago. Able to do more, babysit, housecleaning, etc. But time goes on and FMS progresses. No matter what anyone says about FMS not getting worse I think it does.

I lost my dear counsellor and now I am struggling along on my own. And I find my journal and prayers are all that give me comfort right now.

Stay strong jausten.

Hugs,

Linda.

-- posted by LindaB_2

Top 4. Apr 4, 1998 11:08 AM

» Jausten - Linda, I had to laugh about your son's reaction. It is so typi

Linda,
I had to laugh about your son's reaction. It is so typical of what happens in most families. We tell them something about what is going on with us, and they dismiss it and turn around and expect us to just carry on meeting their needs.

I have found in the past few days, that I am being treated with a small amount of respect. I am struggling to keep my boundaries firm, and maybe it is working. Or maybe my family has just decided to ignore me..*grin...Either way, I'm more content within myself.

Likewise, I believe that FMS must be progressive, because I am worse than I was a year ago, and I know of many people who say the same thing.

The counsellor that my husband and I are seeing is worth his weight in gold, and I trust him. He really listens and really hears.

Like you, my journal keeps me going, plus the few supportive friends that I have online really understand and care about me. One in particular will be messaging me or chatting with me, and will suddenly tell me to go and rest for a bit. My fatigue and pain can be seen through the screen better than it can be seen by my family who can actually see me.

I wish there was a simple way in which to get our families and friends to really understand. I do firmly believe that it is not up to us to have to continue to explain it to them.

Jausten, aka Cynthia

Suite 101 Contributing Editor: Fibromyalgia

-- posted by Jausten

Top 5. Apr 4, 1998 2:05 PM

» Theresa - Cynthia, Wow, what a letter! I can only imagine the pain and

Cynthia,

Wow, what a letter! I can only imagine the pain and anguish you must have gone through before you got to the point that this letter poured out of you. I am luckier than some in that my husband never, never pushes me to do anything. However, I am not so easy on myself. I try to do to much and usually am the one to blame when I 'overdo'. It is a hard life for women with any kind of debilitating illness as we were taught to 'give' to be the perfect wife or mother. Those years of teachings are hard to overcome and it is a daily struggle and not one that is won easily. Thank you for your honest, hard-hitting words; you've given me much to think about. I was in tears reading your letter, knowing that it couldn't have been easy for you to write. Better to have it out though than building up resentment inside of us. Your friendship is so important to me Cynthia. I have truly learned so much from you. You've touched my life in so many ways and I'll never forget you!

-- posted by Theresa

Top 6. Jun 25, 1998 7:42 AM

» Jonah - Dear Cynthia, What a hard-hitting letter and and article. Aft

Dear Cynthia,

What a hard-hitting letter and and article. After I got your last message I decided I would come over and check out some of your articles. Well, An open letter to my Family stuck out like a sore thumb. Are We on the same wavelength or what ?(smile)

Of course the road I'm traveling runs parallel to yours but it is the same path. I see a lot of growth and spirituality in your letter.

Good for you ..Yes it is time to do some things for Cynthia. You are a good person and deserve the best. I'm going to have to read some more of your writing now.

I remember when I first came into the program, a lot of my family were still in denial. There were some that I just couldn't be around. So I usta say, "I love you very much -- but for the time being, I'm going to have to love you at long distance!"

Keep up the good work, keep growing. and stay strong. Or as my other half is fond of saying, "You, Go Girl!"

Richard Tucker
Suite101.com Veteran's Editor

-- posted by Jonah

Top 7. Jan 14, 1999 7:20 AM

» Bethany - Letter to your Family

Cynthia,

I just finished reading the letter to your family. I was diagonosed with Fibromyalgia about 8 months ago. I have been dealing with this for about 5 years now, but in the last year it has gotten much worse. After I was diagonosed, my husband (who is an R.N.) and I sat our daughter(age 11) down and explained to her that things would be different now, even though she had been helping out more over the last year, that she would have to start doing even more. Of course, this brought groans from her. We explained to her that being a family meant that the responsibilities are shared, and that when one member is ill, then the others have to help to pick up what they can no longer do.
My husband asked our daughter if she loved me, of course she replied yes. Then he asked how she would feel if I wasn't able to get out of bed, listen to how her day at school went, go to her school programs, laugh with her, play games with her, help her with school projects, or homework. She was not happy with this idea, so my husband told her that if she didn't help me out (my husband included), that I would be in so much pain and so tired out that I wouldn't be able to do those things. We also explained that even though they were helping more it didn't mean that this would cure me or that there still wouldn't be days that I felt so bad that it would be hard for me to even get out of bed.
At that time I was still working, now I am on medical leave from work. Since I am not working I try to do more of the housework, I do only one thing a day and try and make supper, at this point that is enough to wear me out. If I have a day that even getting out of bed is a major effort, then I don't push myself to do anything around the house.
Well I'm not going to tell you that everything has worked out smoothly, there are still times that they lapse back, but for the most part they really try.
One of our older daughters, who lives close (the others are out of state), comes home as much as she can and when she does, she always asks what she can do to help.
Even my 2 sisters that live near by are always calling to check and see if I need help with anything.
I feel very blessed to have such a caring family.

Love is not just an emotion, it is also an action and in doing for those that need help shows the love that we have for them, not just doing housework, but the action of being there to listen, support and care for them.
I know that this might not work for everyone, but hopefully it might be able to just help one other person help their family to understand.

Bethany

-- posted by Bethany

Top 8. Jan 14, 1999 12:23 PM

» Jausten - Thoughts

Thank you everyone. Writing that letter wasn't very difficult, but getting my family to change is still very difficult. I guess that part of the problem is that we change, and we can't make other's change in response to our needs. It is difficult to keep drumming things into their heads, and sometimes change does take a long time.

My family still doesn't listen, nor do they understand, but when I can't do something now, I just don't do it. Bethany is correct. Love is a verb.

Cynthia

-- posted by Jausten

Top 9. Dec 25, 2004 3:37 PM

» Charlotte88 - Re: Linda,I had to laugh about your son's reaction. It is so t

Cynthia, i'm finding it difficult to find my way around this site, read, type and understand where to find the info i'm interested in, i'm interested in your diary and writings but don't know where or how to email you. Can i give one of my email numbers here please, it's charlotte_chrch@hotmail.com

I am lucky that my son understands my problems, but....he is the only one amongst my family, friends, neighbours, anyone, everyone. I find it exhausting attempting to explain things to them that i can barely explain to myself. So I have over the past few years put up a barrier in order to keep my sanity.

Thank you for your letter above, it told me that i'm not going completely bonkers and there are more people like me.

-- posted by Charlotte88