When you let others do the thinking for you they control your life to some extent. I was told I was too "pushy" about my health.
You mean proactive? You mean actually consider something else outside of "here is your diagnosis here take these pills hope it works" ? You mean I should just settle for what doctors who have never experienced what I experience tell me what is best for ME? If I took what most doctors say without doing research on myself I would be on 10 different meds and over half treating side effects of one or two meds.
I think some people have a problem with people challenging anyone and being informed because of a natural desire to want to be better rather than being motivated by money and being set on ONE way doing things.
My apologies for continuously reading books and studies on diets and different medical perspectives that have SAVED people's livelihood unlike some of those doctors saying diet is not a factor, and there is no way of treating yourself without poisoning yourself.
You live and you learn. What I have learned is that no matter how many years someone has been in school for a subject , I am the one that live with my condition and I know it better than someone who does not have it or live with me to know how bad it is. Experience trumps book knowledge and popular opinions. I have tried several regimens and found one where I can function instead of laying down all day on some meds not being able to care for my kids because I am simply existing in space and not living.
I am the one that has found a regimen to have as much energy as possible and being able to care for my kids.I am the one that has spent hours researching and testing things for myself.
My apologies for looking for answers instead of accepting the only way to do the least work possible on my behalf. Because it is much easier to take 5 meds than actually change your diet, try to exercise, and try to manage stress to get to the root of the problem. If you are content with living with a chronic illness of any kind then maybe you haven't reached my level of disappointment with having a limited life.
Maybe it has never taken you an hour to get out of bed because you were in too much pain to move. Maybe you haven't seen yourself go from active runner and dancer that would run a mile, lift weights and go to a 3 hour dance practice with little pain to having back pain and pain all over from every little move, and not being able to move the next day because you may have did too much when you thought you were doing little.
Maybe you haven't fell asleep in important meetings and classes that were supposed to push you further toward your career(sleep obtrusions). Maybe you didn't have to give up driving because your vision goes blurry and your legs go numb(numbness and tingling plus vision problems).
Maybe you haven't been sick enough to the point that all you can do is lay on a couch all day and pray your kids take a nap so that you can get some rest(chronic fatigue). Maybe you have no problems giving directions to where you live without having to use google. Maybe you have no problem retrieving memories that are so simple (brain fog).
Maybe you have never felt like curling up to die because you feel so bad and have to pretend you are just fine so others won't feel sorry for you or say that you are exaggerating.
Maybe you didn't have to give up a 3.7 GPA in a prestigious graduate study program and have to face the day seeing your classmates graduate when you should be walking across the stage with them.
Maybe you don't have to worry about anxiety and pain going hand in hand after you spend too much time doing work at home on the computer. Maybe you don't have to make the choice of making every attempt to work at home because you have no other option or taking days off of your work to rest and take care of yourself.
Maybe you have no problem falling asleep at night and staying asleep because one of your arms hurts too much but then if you lay on the other side your hip hurts, can't lay on your back because it hurts can't lay on your stomach because your back hurts. You wake up with racing thoughts and some new pain.
Maybe you have never went to the hospital thinking you were about to have a heart attack but it was really an anxiety attack and TMJ.
Maybe you have no problem finding a sitter to watch your kids so you can simply get a break and rest.
Maybe you don't have to worry about not being able to comb your hair because holding your arms over your head hurts too much. Maybe you have no problem cleaning up with commercial household cleaners and getting lightheaded 1 second after they are sprayed.Maybe you have no problem avoiding household work because every time you stand up for 2 minutes your leg burns.
Maybe you have no problem going all day without eating and have to worry about dizziness, feeling lightheaded and weak.
Maybe you have no problem eating anything you want without flaring up with pain and fatigue to the point of not being able to lift your head up so you gotta cook all your meals and spend hours researching what you may need to cut out of your diet next just to function. Maybe you have no problem standing up to do dishes and have to worry about throwing your back out or having neck pain.
Maybe you have no problem working on a job of your choice and not have to worry about getting fired because you can't stay awake no matter how many hours of sleep you get, you don't know one day from the next if you will have trouble standing or simply holding a phone in your hand. Maybe you have no problem with your memory and don't have to be told countless times what to do without having a piece of paper beside you. Maybe you don't have to worry about a small amount of stress bringing on pain and headaches and constant rushes to the bathroom (IBS). Maybe you don't have to worry about sitting at a computer for 10 minutes and the muscles in your fingers, arms, and back starts locking up. Maybe you have no problem trying to do all you can to keep up a household and be a good parent without pain to the point that you must stop what you are doing every 5 minutes because the pain is too much.
I could keep going because this isn't even the half of what I have to deal with. So when you say I am too pushy you remember this until you are at a fight with your own body and mind you can't afford to wait for someone else to fix your problems. You do all you can to do what you can in your circumstances.
If my wanting to get out of the house and have a normal life instead of chatting with people in their 40s about what they are doing for pain,fatigue and brain fog then I am sorry. If my wanting to be able to play with my kids without fearing I am gonna get put in the hospital I am sorry.
If my wanting to get my life back is too much for you then maybe you haven't struggled enough. Until you can come over and watch my kids so I can get out of the house or take a rest then shut the hell up. Until you can come clean my house and cook all my "special" meals for me then shut the hell up. Until you can give me money to see the doctors I need to and pay for testing and treatment shut the hell up.
Until then I am not giving up on my health and settling for a sick lifestyle where I take a med and 6 different herbs and vitamins JUST to get out of bed in the morning. Until then I will watch what I eat, I will read books, I will try to get money the best and most flexible way I can from my laptop, and I will tell your ass off if you come to me incorrect because I will allow no one to stress me. If you can't contribute to my journey to healing then stay out of my way.
You don't know my struggle so don't judge my fight.
Share this with all your spoonie friends with Fibromyalgia, CFS, Lupus, MS, Dystonia, Rheumatoid Arthritis, and any other "incurable" chronic illnesses that limit your lifestyle.
The end.
