I'm suppossed to be at my cousins house right now. I wanted to be there yesterday afternoon. I ran out of spoons. I have not had any real contact with my oldest son and his family for almost 3 years and they live only 5 miles away. We were VERY close my daughter-in-law and I. To the point that when she was carrying her youngest daughter I was with her for every dr. appt. and everyone in the drs. office thought I was her mom. I had fibro at the time already - it just hadn't delivered all of it's jokes on me yet. Well,after many emails to ask them to please tell me what they were so angry with me, I recieved a reply from Cath yesterday. To sum it up she said that I had made the 'choice' to desert them and not love them anymore! Very emotional - - well I guess rage and pain - overtook me because they have considered my breakdown 3 years ago as a 'choice' I made! God, please! This was no 'choice'! I did not 'choose' to be so damnned miserable.
Please bear with me. I guess I 'chose' to be a complete wreck today.
It's extremely hard to think today and I'm having trouble remembering how to
spell and type. Took 20min.to find how to get onto this page.
she says that her friend has fibro yet she, at about 32yrs old., manages to go on with her life as usual. I was 56 and still living my life mostly as usual until at 58 fibro delivered it's final Package of fun. Besides the constant, unrelenting pain fibro has a little quirk I'm sure many of you know of throwing fibrofog onwhen you least expect it or need it. Thankful to at least have heard from them though. It has opened up a door for me to maybe get across to them the full scope of what fibro,cfs,copd and what one shrink I spoke with called a type of post traumatic stress syndrome. Since my world crashed in'08 I have improved greatly, mostly with the help of my friend and former co-worker who is now my caregiver/room mate, no longer staying in bed 4 or 5 days at a time. Getting thru searching out information on fibro a greater grasp on maybe being able to convey to them some understanding of this condition. That it is not just 'feeling achy all over' but a vast range of conditions from debilitating cronic pain with many other physical problems to this mental/emotional confusion which tries to seperate us from our normal rational thought processes. May the saying "knowledge is power" hold true in this instance.
I also want to thank all of you, my new support group, for sharing not only with me but with each other every bit of information we gain along with our painful experiences trying to cope with a disease that even the medical professionals either refuse to accept or are not educated on. THIS IS A DISEASE and I don't care if 'the medical minds' want to call it that or not. Always remembering to stick together we who live with this are the only ones who really understand each other. There really are levels to this condition and contrary to what we are often told it is progressional, most of us start with the achy flu like symptoms and over time continue to experence a decline in our overall health. This does not mean that we are giving in to our plight and 'allowing' it to depress us to the point of not caring to feel better or improve ourselves. There are the lucky (if you can call any with fibro lucky) ones that might not progress further. There are people who have cancer and it doesn't progress to the point that others with the same type of cancer go to. There is no 1 recipe of relief that fits all of us, some things are helpful to many of us while not even making a difference to others. The fibro drugs are all based on antidepressant qualities - every one of them. If they help by all means take them! But don't let drs or anyone else tell you that it is a must you have to use them or you are not trying to get better. The side effects can be lethal, absolutely fatal to those who experence them and are convinced that they Have to continue to consume even larger doses because " it will get better" if you take more! I am one of the ones that antidepressants make worse and cymbalta - tho I was told larger doses would help - put me in the position of a gun under my chin in June of '09.
Educate yourselves on fibro. This is the only way we have to maybe get across to our family and friends who just won't understand and accept that we do not 'choose' to have this condition. That it is NOT all in our heads. That we are not lazy, uninterested in staying close to them, only thinking of ourselves, letting our little health issues control us, giving up for no real reason, drug seeking, overly emotional, losers. I will never give up on my quest to find ways to convince those most precious to my heart that I am still me and I love them. I may get irritated, angry, hurt, frustrated,stressed and withdrawn at times over it but never will I completely quit trying. I might be considered a hardheaded fool to keep beating my head against that brick wall of their doubt but when it all comes time they have to give me credit for loving them enough to keep trying to gain their understanding. LOL, guess it has become my purpose in life right now.
I'm sorry for being so long winded. The point I'm trying to make is don't give up on yourselves or on those who really matter to you. Press on for understanding in those you love and who loved you before this disease seperated you. If they loved you before and cared about you it will be worth the effort when it dawns on them that you were not trying to decieve them and did not 'choose' to be in the condition you are in.
Thanks again to all. I'm going to pray that this may help you with your loved ones.