"But you don't look sick..."

I got this from a site that I adore called but you don't LOOK sick... it's an excellent read for anyone who has or is the partner to someone with an invisible illness-- that means something that makes someone sick, but doesn't have constantly obvious signs (like fibro or lupus). It's a meme that they did for an awareness event and I thought it might be helpful for those of you who *don't* know what's going on with me. 

1. The illness I live with is: The first thing people think of as my illness is probably fibromyalgia. I also have a weak immune system, psychogenic non-epilectic seizure disorder and several things that fall onto the mental scale, like Asperger's. 

2. I was diagnosed with it in the year: I was diagnosed with having immune problems when I was a small child, I'm not sure of the exact year. I was diagnosed with fibro in my late teens/early twenties. My seizure disorder was diagnosed a few weeks ago. 

3. But I had symptoms since:  I remember being sick constantly as a child-- with weird, weird things like scarlet fever, german measles, strep and tonsilitis so bad that it turned my tonsils to mush. When I was in my teens is when I first consciously remember my joints starting to ache. 

4. The biggest adjustment I’ve had to make is: Realizing and accepting that I have limits and that I have to stick to them. 

5. Most people assume: That my symptoms aren't constant and that I get a "break" from being sick. Usually, I don't mention when things are on the smaller scale- when my joints hurt or I'm nauseous, only when things are note-worthy like being hospitalized. I think people kinda figure that I'm only sick when it's bad. 

6. The hardest part about mornings are: Getting up by a certain time. Some days, it takes me a few hours before it doesn't hurt too much or before I'm not so nauseous that moving makes me sick. If I have a deadline for when I need to be up by, it can be ridiculously difficult. 

7. My favorite medical TV show is: My husband is going to shake his head that I'm not saying Scrubs, but.... House. I love House more than I should. 

8. A gadget I couldn’t live without is: My kindle! I inherited it, so it's sort of bittersweet that I have the good fortune to have one, but it makes me feel better when I'm stuck somewhere like the hospital. 

9. The hardest part about nights are: Winding down. Insomnia is one of the other things that pesters me (and believe me, it's one of the more minor worries), so getting my body to accept that it's time to sleep is a trick. Thankfully, I take something at night to help me sleep. 

10. Each day I take:  I take pills roughly 9 times through the day, 10 if you count my vitamin. 11 if you want to count birth control. For the sake of full disclosure, and because I don't think it's a secret to anyone despite my trying to keep it close to the vest, medical cannibis. No comments on my medications, please. Just assume that I'm responsible and that my son's safety is my first concern when medicating, and you'll be right. 

11. Regarding alternative treatments I: Please see above. But honestly, if there's something out there that doesn't destroy our livers like vicodine does, and helps to get me through the day by which I mean 'giving me the chance to keep food down, run an errand without collapsing in pain after and being able to be a responsible parent-- yes, I said responsible while talking about cannibis. It's a shocker, but not everyone who uses it uses it for recreational purposes, and medical users CAN be responsible, capable human beings and parents. I will respect your opinion if you don't agree-- please respect mine, too. 

12. If I had to choose between an invisible illness or visible I would choose: Invisible, particularly if there's nothing else added to what I already have. I'd rather fight an enemy that I'm familiar with, than something completely new and terrifying. 

13. Regarding working and career: I've had to put both of those on hold for the time being. At the moment, getting healthy and taking care of my kid are the two biggest priorities in my life. 

14. People would be surprised to know: That how I'm presenting how I feel on the outside is very likely an outright lie. Chances are, I feel like I've run a marathon, want to vomit and have aching joints. But I take *pride* in being able to put on a happy face when I'm not feeling it. Years ago, I wouldn't have ever admitted to anyone how I was really feeling, but in the last few years I've come to terms with knowing that people don't expect me to be upbeat all the time and that asking for help isn't weakness,it's showing that you know there's strength in a pack. 

15. The hardest thing to accept about my new reality has been: That I'm not going to get to have more children. Because of the way I scar and how my body responded to being pregnant with Froggy, it's very, very ill advised that I ever carry a child again. There's also the chance of my immune system going crazy and spontaneously ending the pregnancy, which isn't something that I feel I could handle happening again. 

16. Something I never thought I could do with my illness that I did was: Give life to such an AMAZING little boy. I thought for a long, long time that I'd never carry a child to term or that if I did, my health would be in extreme peril. As it turned out, I got my shot at the stars. The big dipper looks great. 

17. The commercials about my illness: I think there's a commercial for Lyrica that puts Fibro kinda... nicely? It's definitely aimed at the people who already have the illness. But it does try to explain how it effects people who have fibro to those who don't. 

18. Something I really miss doing since I was diagnosed is: Oh man... camping. Going places at the drop of a hat. Deciding at 3pm that I'm staying out till 2am and not having to leave my friends to go back to the house and get my meds or cancel last minute. I miss being dependable. 

19. It was really hard to have to give up: Being independent. It's been the hardest thing in the world to ask for help. But I'm learning to relax and ask people for the things that I need help with. 

20. A new hobby I have taken up since my diagnosis is: Being a paparazzi when it comes to Froggy. That awesome little guy knows what the camera looks like... and gets the most seriously business face as soon as he sees it. 

21. If I could have one day of feeling normal again I would: I would take Bub and Froggy fishing in the Grand Tetons. We'd go hiking and then we'd stay up to the wee hours by the campfire, roasting marshmallows and not worrying at all about meds or schedules or pain.

22. My illness has taught me: Who I can really count on. There have been people that I've lost as friends because of being sick. But... like the person who I got this meme from said, if you want to know who your real friends and family are, get sick and see who stays. 

23. Want to know a secret? One thing people say that gets under my skin is: When a doctor looks at me and says, "You're too young to have all these things wrong with you. It's all in your head." That's one of the most deeply painful things that I've ever had to hear. And I've heard it with pretty much every new doctor I have to go to. 

24. But I love it when people:When people actually help instead of saying that they will, and then doing nothing. Being able to have a clean living room without wrecking myself is heavenly. 

25. My favorite motto, scripture, quote that gets me through tough times is: "Never give up, never surrender!" and also "When you're going through hell, keep on going. Don't look back-- if you're scared, don't show it. You might make it out before the Devil even knows you're there."

26. When someone is diagnosed I’d like to tell them: It isn't your fault. You didn't choose to be in pain all the time. People are going to treat you sometimes like you're full of it-- especially with things like fibro and psychogenetic seizures, but politely tell them to shut their mouth if they don't have to deal with chronic illness. You WILL make it through. You might not be 'okay' by the standard definition of the word, but you'll find what counts as 'okay' for you, and those days when you feel that will will be pure magic. Don't give up, don't cop out and don't take the easy road away from your illness. It's better to live in pain than to just give up. And don't feel abnormal if you're depressed-- talk to someone. It's normal to get depressed when you're this sick. 

27. Something that has surprised me about living with an illness is: The ignorance of good people. On a positive note, that the strength of others can be relied on when you don't have your own. 

28. The nicest thing someone did for me when I wasn’t feeling well was: In regard to the illnesses mentioned here? Two words: Cleaning Fairies. In relation to the worse physical and mental combo of not feeling well? When Stoker and Razz drove down at the drop of a hat after we lost Dahlia. 

29. I’m involved with Invisible Illness Week because: I'm several months late for IIW, but I'm still doing by part to educate and spread the word. 

30. The fact that you read this list makes me feel: Grateful. Hopeful that you've learned something and understand me a bit better. Cared for, warm and fuzzy. 

Love you guys.