I have done my best to educate my family and friends what my condition is like and I am fortunate a few members of my family, not all, are very understanding. My close friends are very supportive. They know that I am receiving disability benefits. I do let them know what I have accomplished on my good days.[ that helps me keep things in perspective] I downloaded from a site the fibro question air and you can answer how difficult things are to do by a number scale. One question is 'how difficult is it to brush your hair?' I believe it has helped my family members and friends understand how bad it can be.
HELLO
I use to spend an hour or more every day on my hair. Every hair in it's place. It's feels good to look nice. Now I can't be bothered. It hurts my arms lifting them up that high. But I do blow dry if I am feeling well. So fibro finds a way to invade every part of ones being. Have a wonderful day
SLM
Hi everyone I’m finding it hard these days to do my hair as well. But I do have a pretty good support team my mother sisters boyfriend and son have been great help. They help me where they can, accepting the fact that I need help has been the hardest for me I’m 35. And I really want to be independent with simple task like tie my shoes or buckling my pants even holding a pan to cook meal has been difficult for me lately. The whether has played a major roll in my pain. I’m hopeful that this too shall pass and I will be able to use my experience to help others. In the mean time I have to continue to listen to my body so that I can to feel better. I took the kids bowling last night and really couldn’t participate like I wanted to but I must say it feels good to allow myself to be around loved ones having a good time even if I can’t participate in the fun. The worst is when I seclude myself and keep to myself not allowing positivity in so I’m trying to change that. They understand why I can’t always be apart of everything and I have to say no they’re very supportive
It’s my own lack of and embarrassment that keeps me down…
I've found that it's much easier to just say "no." If they ask for an explanation, it's then your choice, depending who they are, if you want to give them one. For instance, if my husband or a good friend, they know I would say "yes" if I could. People can usually tell by my voice if I'm not doing well. Anyone in my life that I would say "no" to would understand why. I've had FMS for 22 years and except for my new FMS friends over the past few years I really haven't made any new friends. If someone did ask me to do something that I didn't know well I would just say "no." At 67 years old I really don't go anywhere. Not only do I have FMS/CFIDS I also have had crushed nerves in my left foot, osteoarthritis, and vision problems we're working on. All of this causes a lot of fatigue with the meds I'm given. It took me years AFTER having FMS that I learned to say "no" without obligation to give a reason. Let me tell you it feels really good to have a choice!
Great question!
I always say i will let you know on the day but truth take it i wont be there if i can be i will be, if they have problem with this then it their problem and not yours. I used to push myself put on face for everyone to say im ok when really it made me worse you need to work out what come 1st in your life and for me that is what good time i have spending it with my son, everything else is above that is option and if it makes me worse or impacts on time with my son the answer is No, If people don't understand this then they are not supporting you, if they do then thats good, The hardest part is accepting that this is where we are at, that have little control over it and why push yourself cause im telling you shoe on the other foot they would not. You would never ask them to put them self in pain for something. It is hard and it gets you down at times, Christmas is hard for never see close family cause i cant travel anymore, but that is how it is. We really see the people in our lives who care at times like this, a friend of mine came by to see me and you know what see her make my Christmas, surrounded yourself with people who care dont push yourself for those who dont see the woods for the trees <3
I find it hard to say NO however I know that pushing myself to the limits is not at all good for me. I have lost jobs as I took on too much Will be homeless soon as I cant afford the mortgage I could of said NO to the house move My gut instinct told me to say NO so maybe I will JUST SAY NO now
I think going to excellent counselor can really help with this issue. Mainly because we need to learn tools plus practice them out on people....like my counselor had me first try with her...than at work since i got along well with most at work plus if i did not they could not hurt me like family can....push your buttons etc.
Mindful living...is excellent book...i recommend it for all and many hospitals are now offering classes in it ...so ask your doctor or call your local hospitals to ask if they have classes. Especially if counseling is not possible...though there usually is some free or very low cost ones in most areas of decent sizes.
GOOD LUCK and this is a skill we all should learn....especially before you have children!! lol!! good luck
Hi, Rashelle. I have done alot of reading related to Eastern and Native American philosophies as they are centered around finding balance in life, mindfulness and viewing suffering in different ways in order to understand and appreciate life fully. I have found it interesting and very helpful in many aspects of my life.
Hugs,
Laurie
I usually say I’m sorry but to take care of myself I’m going to have to say no… Or this is about me, not you. It’s about setting boundaries that are healthy for me. And then I stick to it and try not to worry about what other people think. Their reactions are much more about them than you, Always.
There is an excellent book called Boundaries - by Dr. Henry Could highly recommend it - I reread it every once in a while to help keep my boundaries.
Fibro is something folks can not always see, so to speak. It is not like we are constantly in wheelchairs, or using our canes or blind. It just depends on how the disorder is having it's way with each body. Everybody is different. Although there are times we have been bedridden, many are showing obvious signs. So it maybe visible. But for others, we may look fine. And because we appear fine/ok it's hard for folks to know how we are really feeling.
For, me I look great and many have told me. "Don't look like anything is wrong with you" I hear this alllllllllllllllllllllllllllllll the time. And I am so sick of hearing this. Therefore, folks expect too much out of me and that is when I must set them straight. I can not push myself. No, I can not participate in this or that. No, I am sorry but, I am not feeling well. I may feel AOK one day and the next unable to get out of bed. So, I do not make to many plans because I never know from one day to the next how I will be feeling, when I am pushed into doing something.
I use to feel bad about saying "NO". But, I have learned when I allow folks to push me into things and making promises I am the only one that suffers later.
Just be blunt and up front and say "NO" for health reasons. You can show folks better than telling them. And. NO giving some folks material about our disorder, so they can learn about what we are going through, does very little. This includes family members, co-workers, bosses, and church folks etc. etc.
I have issued so much material it was of no value. Some will care and will learn and be considerate. But, for the most part very few people have been concerned about what I am going through. That is why it is so important to have a very good support group. It does my heart good when someone will call me and say, I read about your problem and I had no idea what you are going through. I would love to hear more of that.
Take care of you and , put you first.