About Us
We have been on the path of looking for answers for some time now. I have had so many tests, MRI's, EEG's, EKG's, Cat Scans, Ultrasounds, Full Body Scans, my husband says I should be glowing. I've had so much blood taken for this test, that test and the other test that I'm surprised I have any left.
I love the outdoors. I love my Family--my Husband, my Children, my Parents and my Brother, my Grandchildren...but if you have noticed with Fibro or even CFS (Chronic Fatigue Syndrome) planning anything in advance is very difficult. You don't know until the day comes HOW you will feel. You may be having a great day, or you may be so exhausted you can't move. Sometimes family or friends don't understand. If you are in pain, tell the Doctor, get a pill, and get over it! I wish it was that simple. If it was, I'd be a major shareholder in their company!!
One problem I faced was finding a Doctor who would diagnose me. I was sent from specialist to specialist, test after test until finally a couple of Doctors mentioned, Oh, I see Dr so and so wrote in his notes Fibromyalgia and CFS, why didn't you tell me this? Well Doctor, this is the FIRST I've heard about it! Communication with the Doctors Offices is so frustrating. And most don't want to be the one to tell you what you have because they don't know enough about it to answer your questions! But for a long, long, seemingly endless time you will hear "The tests came back normal, there is no physical reason for the pain you 'say' you feel." Then they look at the person who came with you and continue the conversation with them, leaving you totally out of it. "Mr. Smith, we need to schedule psychological exams, psychiatric exams, etc., and see why she 'thinks' she's in pain. It's all in her head, there is no logical reason for what she is saying....." At that point you want to jump up and scream "I AM SITTING RIGHT HERE, 'I' AM THE PATIENT, TALK TO ME, and NO IT IS NOT ALL IN MY HEAD!!!! I AM IN PAIN!!!!
I got so tired of being "Invisible" to everyone. Hey, I live, I breath, I CAN still do--I AM ABLE!! No, I can't do everything like I used to, or be going all the time, or take off on a moments notice to run to town for something. EVERYTHING now takes planning. I have good days, and I have bad days but that doesn't mean I can't do "ANY" thing. This is how we came to name our site and our mission "InvisABLE", because we are ABLE. And we are tired of being talked over, through and around. We are tired of being told it's all in our head. And even more so, we are tired of "friends" suddenly walking out of our life because we aren't who we used to be, and are told we have mental issues. No, we don't have mental issues, we have fibro fog, we have Chronic Fatigue, Chronic Pain, etc. But, thank you for showing us now what kind of friend you would end up being.
Your Family and Friends might decide that the Doctors are right. They are schooled, they know these things more than we mere mortals do. After all, some Dr's act like they are all knowing, a God of sorts. "I see no physical reason for pain, so you don't have pain, Viola, you are ok!!" Now THAT would be a sweet trick!
Little by little, the friends you have may become friends you 'had'. They may call you crazy, they may say you need mental help, something is WRONG with you mentally, you may try sending them information to read, but they may take offense and say you are now an attention grabber and in more need of mental help than they thought, and to NOT EVER WRITE or even have contact with them again, when in fact, all you are trying to do is help educate their ignorance to the conditions you now live with day after day. To explain why now your life is centered around your pain, your fatigue, and it's NOT because you are lazy, or don't want to do something with them. You have REAL issues, and they are Far from MENTAL!! So...your friends fade away, or, they may make an abrupt and rude exit from your life. THAT is when you truly see who your friends are, and how many are only fair weather friends, there when "they" need, but now that you have true issues, they are no longer there. And yes, it hurts. It is an internal, emotional hurt. Something you now have no one to talk to about. Everyone is tired of hearing about your pains and what you are going through. But take heart, it is NOT your fault. They are just very shallow people!
Something that everyone with an Invisable Illness needs to remember is your Spouse, your Children, your S.O., they are hurting too. They may not have the pains you do, and they may not understand fully the extent of your pains. But don't forget them. Talk with them about it as much as they will allow. A very good and important thing is: ASK THEM HOW THEY FEEL!! Ask them how your conditions now affect them. Figure out ways to work with these things to try and make your relationship stronger. Don't let your Illness come between you. If they love you, they will understand and WANT to be there for you.
I had a conversation with my husband. I asked him how my conditions affect him. He said that the light and sparkle is gone from my eyes. He can see even though I try and hide it from him that I am in very real pain, most all of the time. That things I used to enjoy doing I don't have the energy for anymore. He notices when I try to take a short walk through my flower garden that I have to make frequent stops to rest, and that is difficult to see since I have always been a go-go-go person and more energy than the energizer bunny. I used to make him tired watching me always going and doing something, but now I make him tired seeing how I hurt. He said that since I lose my balance so much he doesn't feel he can even go work in the shop and leave me alone in the house for fear I may hurt myself. He's come in several times in the past to find me passed out on the floor somewhere unconscious. He doesn't want to admit it, but I do limit him.
I made a comment that made him a touch upset. I told him I would love to do a poll and see since I know the percentage they say of spouses who leave people with Chronic Illnesses because they can't stand it, I would like to know how many people with an Invisable Illness leave their spouse or S.O. because they can't bear being in all the pains they are, and feeling like they are holding their spouse or S.O. back and not allowing them to live their life anymore and be truly happy. My husband told me I better get thoughts like that out of my head, he wouldn't allow me to go anywhere and leave him. He loves me and will always be here for me. I do wish we had more freedom though.