I think this makes a lot of sense too! Either way, you are putting her in her place, that is just going to be unavoidable, in my opinion!
Hi siskiya - Thank you so much for your support! I agree with you 100% in what you had to say.about all this. I do have a few people who understand and those are the ones that I keep. I have let go of the others, as they were so nasty about it all and would try to 'hurry me' through things that I needed to slow down for. My life is much better now because of this website and connecting with other women who know what I go through. Somehow, I 'feel' safe now and have a place to go to, to vent , offer advice and just listen to what others have to say. Laurie
I surely understand the keeping it to yourself thing. Tomorrow I am in a little bit of a situation as I am seeing a homeopathic Dr. here in Italy. A friend of a friend is going to go and help me translate. I can communicate most things and my italian is pretty good but I just don't want to miss anything. I am actually flipping out about another person knowing about my medical history as it makes me feel weak and lazy. Oh well, I guess we have to tough it out. Laurie, I completely understand. Sometimes I have that envy. My husband is like the dang energizer bunny and while I appreciate all his help it surely makes me feel unworthy :(
Hi Laurie, I am sorry you had this happens you. I know exactly how you feel. I think it is good you did what you did. She obviously is over stepping her boundaries and not respecting yours. I told a friend I would help her do some things in her home the other day. I had every intention of going but was unable to as I was in a lot of pain and had to take something for it. Now I will not drive if I am in pain, or taking meds. When I tried to explain this to her she told me to get over it, and then hung up. I help this elderly lady when ever I can and I just felt so hurt and disappointed in her. I haven’t talked to her since. Unfortunately there are a lot of judge mental people out there. Leanne
Hi Enuf - you took the words right out of my mouth! When people have more energy then me and are able to really get around, I do feel unworthy and guilty about what is going on with me. I shouldn't have to feel guilty about my illness - but sometimes it really hits me - and I kind of feel responsible for being sick. Laurie
Hi Leanne - I am sorry you were treated so badly by your 'friend.' She was not really a friend after all. It's just amazing to me how people react when I tell them what is going on. I really get negative feedback when they see me at one point, feeling well and getting around and then the next day - I am in pain and can hardly move. That's why I tell them I will never know how I feel until I get up in the morning. This is so true - isn't it?? It's a very baffling illness that we all have and i know that we try our best to explain it - but sometimes I 'm just so tired of it all and just wish they would accept whatever I tell them and just let it go!! Linda, the woman I was talking about, emailed me this morning and apologized. She said she had no idea how badly I was feeling. I appreciate her apologizing - but I still wish people would just take my word for it, when I say that I am not feeling well. Hugs! Laurie
Hi there. I completely get where you're coming from Laurie. One of my sisters does understand my Fibromyalgia as she has suffered some similar symptoms before she was diagnosed with Coeliac disease. However, virtually everyone else I've met or know have no sympathy or understanding. If I happen to mention to a certain friend that my back or arms are bad today or that I'm totally wiped out she reacts like she's accusing me of malingering or that I've stolen something off her. I always feel I have to downplay my symptoms so that I don't have to answer the barrage of accusing questions or statements that imply I'm lazy or a hypochondriac! I don't understand why people who supposedly know us and claim to be friends can be so callous, mean and accusing.
I hope that at least knowing that others on here understand helps you a little
Laurie, I am so glad she apologized for her behavior. You are right, I have had people say things like,“can’t you at least get a job answering phones, how hard can that be” My own sister said that to me! I have one brother who has it. I know my mother had it. They just didn’t have a name for it back then. I remember that as a teenager, my mother would come home from work and be aching all over. I remember having the hot water bottle ready and rubbing her legs and back until she fell a sleep. I now know what she went through. Leanne
Geez. I'm sorry but people take the pomp and splendor of the wedding ceremony waaaaay too seriously. What I mean by that is that weddings have gotten out of hand. They are too expensive and too over the top. What happened to a simple ceremony where the emphasis is on the ceremony and not the things? And Linda is a prime example of this mentality, where the "product" is more important than the people involved.
I'm sorry that you're stuck in the middle of this fiasco, Laurie. Really, Linda truly believes that everyone is as hale and healthy as she. If only! But it IS an arrogance to presume that everyone is well and healthy, especially since you've already told her that you are NOT. So you've told her so again. Let her worry a little less about the glitz of the marriage and a little more about the love between the bride and groom. And the love for family members too. THAT is what a wedding is about. Love. Not things.
RE: Answering phones. How hard could that be?
Like dredging up a heavy bag of cement each time you answer it, after a certain point in the day. While your back is made of liquid fire (lava), your head is screaming like a car alarm at 2 AM, your knees feel like the Godfather beat them with a baseball bat and your elbows feel like someone drove an ice pick through them. THAT hard.
Please feel free to tell your sister that next time, if you so wish.
Wow. Some "friend." I wonder how she'll react if SHE gets a recurring illness? Will she want you to be accusatory back to her? Gosh, I don't get where some of these people come from.
Hi Laurie, I like SK's explanation also. I am lucky in that I know the reason for my fibromyaliga. I have Ehlers Danlos Syndrome with Hypermobility. EDS is a genetic connective tissue disorder that causes the body to make bad collagen. It is not very well known, even by medical professionals which is why it was missed for so long. Not knowing the cause of fibro doesn't mean it doesn't exist though. Not everyone will know why their body decided to go wonky. I wish you didn't have to deal with the lady who doesn't understand. I've heard it compared to the "worst flu" someone has ever had, that never ends. Some people still don't get it, even after that explanation. Hang in there and don't let this clueless lady get you down.
hugs
Susan W
Hi Laurie you really needed to vent. I work at a job where I read and analyze medical records so I was familiar with fibromyalgia several years before I was dx. Trouble is many I work with doubt the symptoms and consider it more of a mental illness than a physical one. It doesn’t help that depression and anxiety accompany it. I told a few people I was dx because I felt so horrible at the time I felt I needed to explain. But honestly I avoid talking about it most of the time. Sometimes I think the more u try to explain it the worse other peoples reaction are. I know how frustrating it is. Maybe u should simply and very matter of factly tell her that u will do all u can for your son thank u very much. And that she should count her blessings for her good health and vitality.
Hi Susan - It does feel like the flu - all the time. This is so hard on us too, especially mentally. It's a very rare day for me when I feel pretty good and have a good outlook on life. Pain changes absolutely everything around me, you know?? Thanks for responding! Laurie
Hi everyone,
I just watched about half of the video that Lisa M posted, entitled the Gerson Miracle, and recommend that everyone do so. It is astounding, and goes right along with the ideas of many on the site.
Wishing you all well,
SK
Glad to help. Here is web site...sure some of you have used it etc. Called But you don't look sick...lupus woman got it going since she heard that so much, like all of us have ..hidden diseases etc.
Here is top worse suggestions..in sick humor..http://www.butyoudontlooksick.com/wpress/articles/sick-humor/sick-h...
Also there is blog by woman that i checked out and looked as possible good blog site as well to make us feel better etc.. it is very close same as above... Do I Look Sick ...So www.doilooksick.com
Sure humor one will get few laughs if not a lot! i hope!! i enjoyed it plus great come backs i was thinking you could make out of some...
as to come backs...think that be great discussion to get going. I hope you just limit your emails to that woman or stop completely...just say you been sick if she asks...true..sick of her and her anger is not good for you!
I forgot to congratulate you on wedding! I sincerely hope they are happy and she turns out to be sensitive sweet daughter in law.
I just that she apologized...which is step in right direction...maybe she realized how stressed she has been and was directing it at you! I still be very cautious and limit your emails...her actions are going to show if she is sincere or not...I myself would go slow, since i have learned that it is actions that speak louder than words.
I hope though it is going to all work out for the best! Love is so much easier than anger etc.
Oh my goodness, Siskiya. What you just said is profound. If they care you really don't need to explain. Thank you for the reminder!
Yes it IS frustrating. I agree, that if they don't understand us, the least they can do (and I do mean the least) is to believe us. They COULD do more but most won't. I had huge problems with my in-laws for 20 years, finally my hubby left me and his girls with a 3 hour notice that he was moving out. Now one of my daughter lives across the street from the ex in-laws and ex hubby and she hates me. I met 2 of my 5 grandchildren as babies, but haven't seen them in 14 years because of the trash that is continually talked about, about my "fake" illness. Yeah, the fake illness that made my kidneys fail and caused premature babies and 18 surgeries and broken bones. THAT "fake" illness.(Lupus along with fibro). I have become a loner because I am so tired of trying to get people to understand and believe me. Also, you have to BE a friend to HAVE a friend, which means doing things with them and for them, and I can't even take care of myself and my mother, so I can't make/keep a friend. I have always said that the social problem of this illness is much worse than the physical part. I even hear of so many fibro patients who can't even get a Dr. to treat them with as much respect as people get with other illnesses. I have asked out loud why God would give me an invisible illness that no one sees, no one believes in, not even the doctors, and is so disabling.
I am so sorry for all that you're going through and know that it's really frustrating!!! I will be that friend who will be there and support you. I have various invisible illnesses and one special friend who understands me since she has had juvenile diabetes all of her life. What is important is that you know the truth! Be kind and gentle with yourself and remember that this online support group does believe and support you:)
HI Sheila - I am SO angry at the way you are being treated. I am awfully protective of everyone on this sight and I can't help but be riled up when I read things like what you are going through. Children are much more tolerant than adults of our illnesses!!. I do have some wonderful friends, but had to let go of a few others because I was tired of their impatience and constant questions, such as.....''You certainly don't LOOK sick!'' Or......''WHY are you so slow today and why are you limping??'' .I am embarrassed for these people because they are supposed to be grown up and intelligent enough to know they just shouldn't ask these kind of questions. All that you go through with your family because of an illness you can't help!! Stunning, isn't it??
Unfortunately, for many years, my daughter Kim and I have been somewhat estranged because of my illness. The thing that is so amazing to me is that she is a Vet Tech!! She adores animals and empathizes with them tremondously. What's wrong with this picture?? She has a beautiful 8 year old son, named Hunter, and in the 8 years I have known him, I think I have seen him 5 times! Breaks my heart. But I let go of my relationship with Kim a long time ago - and I feel much better now. I have put the 'ball in her court' and it's up to her whether she wants to mend the Mother and Daughter thing.
However, one great thing has come out of all that I go through - my son, Jason. He is just wonderful to me and he comes over every week for lunch. He is getting married soon and told me that he wants to have children in the future. He also said that I would be a major part of their lives as well. I had tears in my eyes because I have so much love to give being a Grandma! Love, Laurie
.