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Members shared deeply about the emotional devastation of losing themselves to fibromyalgia and chronic fatigue syndrome, with many describing... Read more
I live with someone who is fantastic at making piles - well mounds more like. It depresses the hell out of me, but now I just look on the bright side that the fact that I can't deal with the mounds doesn't matter because he likes living with them. In terms of dealing with 'stuff' I've learned to be satisfied with even the littlest of progress and believe that it's OK if I really can't. I also find that there are some days that I sew and completely ignore all household chores and the fact that I've done something I enjoy doing makes more difference than the pile of dirty dishes. It took me a long time to reconcile myself with this but it was so worth it. You HAVE to do stuff for you else what's the point? You are actually nicer to be with when you've done something for yourself - really...... try it and see what happens.
Thx for sharing with me. I feel less isolated. @A MyFibroTeam Member, I would love to work together with you at changing our mindset about the guilt of “only doing things we NEED to do, and not what we’d love to do“. If we could get past the obvious, that our homes may never be what we once lived in, like we try to accept that we cannot do what our physical bodies did before, we might be able to enjoy life as it is better. I know I would probably be a more pleasant person to live with. @A MyFibroTeam Member, You (we) are not useless, we are handicapped. We would only be useless if we quit trying. @A MyFibroTeam Member, I’m going through a similar situation as you, trusting someone with my future and security, only to be stressed with issues that I once had the energy to see to myself. (We all know what stress does to our pain) The most haunting feeling is knowing if the roles were reversed, every effort would be made to help the other person feel comfortable and confident that we had their back. My situation involves a family business that was sold to my stepson, with a healthy retirement income in lieu of a huge cash sales price. He folded the company (some but not entirely) due to an economic crisis in our area, along with our well planned existence of a care free life. We are barely getting by, with his half attempts, to try to help us trust him & honor his commitment. My husband seems to be more concerned about his son’s well being than with ours. He is older than I, and I worry about my future if something happens to him first. I have stopped being angry because it only makes my health suffer more. My kids hold me responsible for the distention in our once close knit family and my husband does nothing to try to heal this. Not only have I been accused of “only caring about $$” but I’m classified as a selfish, neurotic, drug addicted, hypochondriac. No efforts have been made in 7 years for concern that Mom and Dad have been effected by this the most. Only 1 of 5 of our children have been to our home, or call regularly to check on us, including 9 of 13 grown grandchildren. One son and his family tries to understand my illness, offering help when we need it. After 43 years of marriage, it is not the legacy I intended to leave, nor the heartbreak I endure, after years of unconditional love and unselfish mothering. Holidays are the worst, I dread them. But I’m not a quitter, I’m a fibro warrior. I have no other choice. @A MyFibroTeam Member, it seems the most compassionate people need compassion the most. @A MyFibroTeam Member, I believe great strides have been made since I was diagnosed in 1999, and with awareness such as this, it hopefully will continue. I can only offer my fibro friends another sad but true, realization of how this disease has changed my life as well. If we at least have each other, then we are never really alone.
I’ve added you all to my team (I think that’s a good thing lol), and I’m here to help any way I can.
Gentle hugs ~ Anita
I feel the same, Anita. I live to craft, but need to get the daily chores done. That's not always possible. So they pile up. Looking at the piles, I feel deflated and a failure, adding to the depression. It's a vicious circle.
Feeling useless, during a flare I can't use my hands, as wrists and arms are sore I hate not being able to care for my 15yr old son who has cerebral palsy. I can't even change a nappy
@bcre8tive. To be honest, I don't paint as much as I would like to. My guilt for feeling and seeing my household chores suffering and multiplying from the days I cannot do them, doesn't allow me to ignore them enough to do what I love to do. I am forever trying to catch up, and never experience the freedom to go to my happy place, my art. We moved to our current house almost 3 years ago, and I still have unopened boxes to put away. Knowing that you are thinking " these items could be discarded if not missed or used in all that time " does not make it so for me. The majority of it - is the contents of my studio from my last home- what seems to be all I have left of my life before pain. I do have a dedicated room, but have often opened the door to pile found supplies on top of another pile. I can't walk from the front to the back, and can't recall all that's in the room. In order to sort and organize could only be accomplished by emptying the room, and starting over. That's so overwhelming, I just shut the door. I then usually go back to bed. My husband has suggested we hire a cleaning service twice a month, but I resist, thinking I need to clean and unclutter beforehand. He has offered to help me with the room, but realistically, I am the only one that can decide what's important to me. This does nothing for my health and wellbeing, but mostly feel more defeated than ever. FMS/CFS has stripped me of so many aspects of my life, and I truly have tried to adjust. But it seems that the personal things that (only) I used to enjoy are out of arms reach, to keep up with daily living for any kind of normalcy in my home, family and marriage.
This is not an invitation to my pity party. All that I have is still more than I need, and I am grateful that I can still push through sometimes after 18 years with this horrible condition. I rarely expose-especially to strangers- my emotional pain, because my physical pain is always obvious. I apologize for the long rant, I started and couldn't stop. I'm thankful for the opportunity this site offers, to provide a safe and understanding place to unload and not be judged. I feel like I have you all for friends, and we all know how much we need each other.
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