A Son's Perspective on Fibromyalgia
Read the article this discussion is about
- CarolM
- Theresa
- LindaB_2
- Jausten
- Diana_Pederson
- Stabby
- FrancineS_2
This archived discussion is "read only".
For the corresponding "live" discussions, post in the active topic forum here.
» CarolM - Hi Cynthia....once again your article touches on an area that I
Hi Cynthia....once again your article touches on an area that I think all of us have had experience with often.I think it proves that our families go through a "grieving time" for "what was" the same as we do. They do see us when the disease shows...when we are in a lot of pain...when we try to do something we used to do with no effort and now we aren't able to accomplish it. Perhaps because of their love for us their grief and fear may be even stronger.
It is possible that they don't resent the time we spend on the computer as much as they resent the disease that has taken the "real mom (wife)" from them.
Anyway, thanks again for a great article.
Soft Hugs,
Carol Mahnke
-- posted by CarolM
» Theresa - Hi Cynthia, I agree with Carol's statement regarding our fami
Hi Cynthia,I agree with Carol's statement regarding our family not so much resenting our computer time as they resent not having the parent they knew 'before FM'. My boys are 13 and 15 and know very little about FM. They know that I'm tired all the time but on those days when I can go all day, it seems that they believe I have 'selective fatigue'; in other words, that I'm only tired when there's something that I want to get out of doing. I have explained to both my boys that being on the computer helps take my mind off the pain. I do tend to get engrossed in things from time to time and not realize how long I've been sitting in the same position. A few minutes of walking around and stretching helps this, but as anyone with FM knows, the pain is never GONE.
Thank you Cynthia for another article that hits the mark for so many of us.
hugs!
-- posted by Theresa
» LindaB_2 - Linda L. Boling Thank you Cynthia for the excellent article.
Linda L. BolingThank you Cynthia for the excellent article.
I often feel as though I am neglecting my husband by spending so much time on the computer.
It is very good for me to get online and chat or just surf. But what the family doesn't understand is how much this helps me with my pain. I can get engrossed in following links and making notes and not realize it has been two hours.
So that I could have some time to myself on the computer I come online at 7 to 8 PM while my husband watches a show on tv that I don't particularly care to watch. But at 8 I turn this thing off and 8-11 is my time with him. It has worked well so far and I find he is much less resentful of the time I do spend here.
I need to educate my family more as to how much FMS has taken away of my life. They don't seem to understand and I find they also get angry when I say I can't take the grandchildren for an overnight stay. It is just too much for me to do anymore.
I appreciate you allowing me to ramble on here and hope I make some sense.
Please tell your son I appreciate his being so honest about how it feels. And I will keep this in mind when next I have to deal with the family over something like helping with dishes when we have a family meal here.
God Bless.
Linda.
-- posted by LindaB_2
» Jausten - Thank you all. Linda, I just told my son what you said. At thi
Thank you all. Linda, I just told my son what you said. At this point and time, I've been on the computer for 3 hours, working on my web site, visiting sites of friends, and those who have signed my guestbook, plus did some email. It is amazing to realize that 3 hours have passed! I've also had a few messages via ICQ which is a part of my support system.Theresa, you are so right! On our good days, we can do much more, and it can seem to others that we are just picking and choosing what we really want to do. But I find that my pain and fatigue are greatest when I'm doing things that I know can be taken care of by others, like cleaning or doing the neverending laundry, or driving my youngest son somewhere when there are 3 other drivers in my family.
Carol, I agree with you. It is easier for my son and family to blame others or the computer for my pain and fatigue, and my obsession with writing and working on graphics and web sites and helping others online. It may be that my son and the rest of my family feel left out, and they have always had me to support them when they were dealing with a loss of some sort. I don't have the energy to just stop whatever I'm doing to tend to their needs. I sometimes wonder how people with fibromyalgia and very young children cope. I can visit friends who have young children, but I don't have to tend to their needs. I can just enjoy the children for a short time period.
I attended a series of one-act plays last night at The University of British Columbia which is about an hours drive from our home. I had to sit for 2 hours before intermission. I was in a great deal of pain, but it was important for me to see these plays. My son had written one of them. I enjoyed my evening, but my night was restless as I tried to get comfortable. For me, it is the important things which I do now, and if I have to say "No" to some requests, I try not to feel guilty.
Having a hidden disability is very difficult, and especially one that changes from moment to moment. My family would benefit from counselling, and I know that the support for families is not available as readily as it is for us. But, then again, we have sought support. My family has not. I will encourage my son to read all of the responses here. Thank you.
Jausten, aka Cynthia
Suite 101 Contributing Editor: Fibromyalgia
-- posted by Jausten
» Diana_Pederson - I think my son could have written this article. He just likes t
I think my son could have written this article. He just likes to say I am addicted. He doesn't understand that writing helps keep me sane! Also, I can relax in my nice recliner and still surf, create webpages, etc.-- posted by Diana_Pederson
» Stabby - Jamie Belair I recently found out about this site from my mot
Jamie BelairI recently found out about this site from my mother, who suffers from FMS. We live in quebec, and there is not much support for this disability. Over 5 years, me and my step dad have learned to deal with her disability, and we try to make it as easy as possible for her. I have been away from home for 2 years, i am in college, and i get to go home maybe once a month. I keep in touch over the phone and i feel so guilty that i am not there for her.
This week i am doing taxes on the computer, and mo was going to come up on tuesday to help me, and she phoned, and she was crying, she did not know why, or perhaps she did not want to tell me, and i convinced her not to come that night, and instead she came yesterday. She was really happy to see me, and i was very happy to see her. Over the years i have come to understand the disability, on my own volition, as i wondered what it was she was suffering from. I dont know everything, nor does she, but the knowledge i have gained from the internet has helped our family cope with my mother's condition.
To find out more, you can goto
http://www.comnet.ca/~stabby/fibro.htm
-- posted by Stabby
» FrancineS_2 - Just came across this entire site this morning.After reading a
Just came across this entire site this morning.After reading afew articles i feel as though "I'm home". This particular article
written by your son is word for word what my daughter, age 16 has said to me time and again.
Thank you for sharing with us
-- posted by FrancineS_2
Please follow the guidelines set forth in the Suite101 Posting Etiquette when adding to the discussion.