Thank you so much! I am trying the best I can. Being in the Military makes it even harder. I feel so lucky to have you all on here for support though :)
I get told that I look great too. That is a curse and a blessing at the same time. I am grateful that fibro does not make you look as bad you feel but sometimes it would help for people to be able to see something physical. But i like your idea.. something has to work eventually.. :)
Thank you so much! Having the support on here from you and others means more to me right now than anyone knows!! I appreciate your kind words so much:)
I agree with Scott - you are amazing! You are able to juggle school, parenting a small child, fibromyalgia, and everything else! Welcome to the site and I look forward to getting to know you!
Sunny
Thanks Sunny :) I really appreciate your kind words!!
Dear Renee,
I will not even begin to try to add to this wisdom, let me just tell you that so far you have been given some very good advice from women I value. One an RN, one a Physicians Assistant, and another who seems to know her herbs and nauturals inside and out, and two other astonishing young ladies that I am just beginning to know.
You are a very pretty young Mom with a darling little guy, I am so sorry that you and all of us have to constantly have to go through this, especially with our loves ones.
We are always here, please lean on us!
Hugs,
SK
I know your pain. I am one of the few men that get fibro. I am on disability because of the fibro and other medical problems I have. I lost my best friend of 20 years because I am just being lazy and don't want to work and I had to sell my truck, boat, and 4 wheeler, and drop out of our hunting lease. His mother in law "has" fibro and she is just fine except for a few days of the month. I am in pain every day, I have foggy days every week. I am lucky to have a wife that has watched over the last 7 years as my health has gone down. You will find out who are your true friends and who is not a true friend. My in-laws did not beleive that I was sick until they saw my muscle spasms getting out of a chair, when I had my foggy days. It took 2 years for them to accept it, but they are now supportive and understanding. If you have any 1st cousins check to see if they have it. 2 out of 4 of mine do, that makes 3 out of the 5 of us. If you have any more questions you can contact me. I am normally up 3-4 times a night. Brian
I'm really sorry that you've got so much to cope with. This would be tough for you without the military aspect. My ex-partner is in the military so I can understand the stress of deployments etc. They add to the severity of your symptoms, because of the effect of stress (which affects any physical disease) and the physical demands, you're basically a single mom for that time.
When my own sister was 16, she developed ME, which has some symptoms in common with fibro. When she first developed it, my dad (a doctor) spoke to the neurologist and he said that he didn't know what it was so it must be psychological! My dad said that if that was the case, my sister was so sick that she needed immediate evaluation by the psychiatric team. The psychiatrist came down and saw my sister and said it wasn't anything psychological. My dad turned to the neurologist who says, "oh, they always say that". This doctor was so arrogant that he labeled anything he didn't understand as "psychological", and wouldn't even believe the experts who said it wasn't. Some doctors are conditioned to think of anything they can't diagnose as psychological, rather than face the fact that they don't know. There is a similar attitude to fibro from some doctors, just as with ME. Sadly, that results in the general public and those close to fibro sufferers getting the impression that it's all attention seeking/hypochondria/laziness/selfishness etc.
As for the best way to tackle your family members to get them to understand, it depends on their approach to things. Sadly, things like the letter below may only help people understand what fibro is like once they have accepted that fibro is a real, physical disease. A good way might be to show your family the brain scans which show that people with fibro have problems with brain function. It is important to emphasise to them that just because it's in your brain, does not mean that you have control over it, anymore than my aunt could "control" her brain tumour. The scans are included in a discussion on this site, http://forum.livingwithfibro.org/forum/topics/brain-scans-prove-fibro-is-real-4
Unfortunately, for many family members accepting that fibro is real is a gradual process. They have to accept that their loved one's life has changed and that they are unable to do many things. It is also difficult for them to come to terms with the fact that they doubted you and called you lazy, or said you were pretending because you went to that special occasion that time and then tried to make out that you were extra tired afterwards to get sympathy. They have to come to terms with the loss of the "old you" and to accept that this is the "new you" and that this is how you will be unless some medication is developed to treat fibro. The grief and guilt are so great that some of your relatives may refuse to accept it, it's easier that way. Then they're the ones being lazy/selfish/a drama queen, they're choosing peace of mind for themselves over their love for you.
Living with any major disease is never easy, that's why this site is so wonderful. Here we all understand in a way that even supportive family members cannot. I hope you get some help from the suggestions in this discussion, it makes such a difference to have supportive, understanding relatives, especially when you have to cope with being military too.
Good luck, I hope things get better soon.
Thank you so much. This made me feel so much better. I really appreciate your kind words and compassion. It makes it so much better to be able to speak to people that understand :)
Thanks so much Brian! I will check. I think my younger sister may have it. I hope not though, for her sake. I am sorry that you have this and that you lost your best friend. I am glad that you have the support of your wife though, and your in-laws :)
For a while there were many doctors telling me that this was in my head. I am finally happy to have found a great doctor that believed me and gave me a chance. It is horrible being in the service sometimes but i manage. Thank you so much for you kind words and understanding. Reading this made me feel understood and cared about! I hope on day i can have my loved ones understand like you all do on here. Thanks again.. :)
Brian,
What an awful thing with your friend. SOunds like he was mad you could not do "stuff" with him anymore. ANd friendship is based on other things besides stuff you can do. People react out of fear, don't you think? If they see someone become ill they might be thinking "that could happen to me". Or they do not know what to say or how to help. They feel powerless and we all know that feeling and it is not good.
Dear Starsmurf,
I had never seen that post by Sheila of the brain scans of FMS or CFS! Wow, that is very powerful evidence. My Rheumatologist told me FMS changed the brain, so here is the proof!
Thanks for such good info, thank you too Sheila!
Renee, this should help you to present this to your family.
Wishing you my best,
SK
Hi Renee..you are getting some really good advice. I wanted to add my two cents. These are only suggestions.
Buy a book called, "Chronic Illness and the 12 Steps" by Martha Cleveland. You do not need to be in a 12 step program to gain wisdom from this book. The author has suffered from chronic illness all her life and is a psychologist. The reason I would read this book is because you are just starting to deal with the ups and downs of life with chronic illness and might be surprised to learn how much energy we spend on the emotional aspect. This woman is able to dissect through all of the emotional pains of illness and break them down into specific emotions that we all know of but might be unaware how they present in us chronic patients.
I know you do not want to say you are handicapped. And it really is your own choice, but I think it is important to have some level of acceptance that you are indeed chronically ill. This is a touchy subject on this site and many sites. Accepting does not mean giving up or that you are less of a person. It can be looked at as just an objective fact: I do indeed have a chronic illness. Sometimes fighting with ourselves with this issue uses up our much needed energy.
The last thing I would add, and this is from someone born with rheumatoid arthritis and have had 40 plus years of dealing with people-some bad ways and some good, is that you need to focus on YOU. If you were able to truly plan your days without outside influence i.e.; rest when you can, cancel plans if you need to, stay at a function only until you feel you can, and do this without trying to convince anyone of anything; maybe you would feel better physically and emotionally. And maybe the people in your life will see that you are not trying to draw attention or pity from them, or even trying to force them to see things as they really are. What you are doing is taking care of yourself and respecting yourself enough to do what needs to be done for YOUR health. Easier said than done. We all want our loved ones to understand, but you are the one who has to live in needless pain trying to put on an appearance for them. And that is not fair to you at all.
Good luck
Maria
Yes, thanks for the info. I am so tired of people telling me I look good like that is proof that there is nothing wrong with me. When I do go somewhere, I try to look decent. I have big dark circles around my eyes and I wear a lot of makeup when I go out. I never used to wear makeup at all, even when I went out. I went from being healthy and active to looking like a ghost from being inside a lot. I had one cousin tell me that I looked good and that was what counterd when I saw her on Easter. I felt like slapping her. I wish looking good meant feeling good! I wish there was a “makeup” we could apply to make the pain go away as easily as concealer makes the dark circles disappear.
You are so welcome, Renee. I was so impressed with you and all that you're doing. It made me sad to think of other people not understanding your situation when you are doing so much AND serving our country. I hope you come back here when you feel frustrated as we all understand your situation.
And PS: Thank you so much for serving our country!
That scan is SCARY! I'm not sure quite how to interpret it but it looked like there were actually places where gray matter was missing on the fibro brain. I hope not. Jeez, we have enough to worry about. I don't want to think about parts of our brains missing.
Aries...you will get something out of this book...it is worth having
What an amazing letter Amy, I'm so glad you found it and shared it with us all, as I think it sums up so much of how we all feel at various times. Good luck Renee and remember you are not alone and that there are people here who are thinking of you and are sending gentle hugs. x
I too lost my best friend. When I talk to her on the phone all she says is stuff like “when are you gong to be normal again?” it is so frustrating and I have sent her info that she doesn’t read. I feel that loss very deeply because even though she is still there, it’s like she isn’t. I wish I could swallow a pill and be “normal” (not that I was normal before, LOL). I have never really felt lonely before but since all this started, I do feel lonely and all alone. I am so glad I found this group- I finally feel like I have found people who understand.