A Plea for Understanding

As many of you know, I have fibromyalgia. Many doctors consider fibro to be an auto-immune disorder: basically, my body attacks itself. As many of you also know, I have the immune system of a bottle of glue. I seem to have very little resistance to infection, and since I was diagnosed with asthma, I’ve had more problems, especially as far as respiratory issues go. Many of you also know that I have chronic sinusitis and that, from time to time, it flares up into an actual full-blown sinus infection.

In December I came down with bronchitis; in January I had the flu. Now in February I have a very nasty sinus infection that is causing me a lot of problems. I am penicillin-allergic, so there are a limited number of meds I can be on when I get sick. This time I’m on Cipro, but it doesn’t seem to be doing as much for me as it could. I have had a headache for the last three days which I can do very little for; until last night, I couldn’t stand up for more than five minutes at a time without being violently sick. Apparently I have a lot of fluid in my ears because I’m having vertigo. I periodically have really bad nausea (like this morning). I keep wearing out insanely easy. I’m exhausted all the time. And I’m just not getting well fast enough this time around.

So, what does all this mean? Well, between talking with my doctor, my parents, and the Captain, we’ve decided it means that I am not taking care of myself as well as we thought, and that we’re not managing the fibro as well as we thought. Consequently, there are greater ramifications for activities than we originally thought: travel is harder on me than previously thought; I need greater time to recuperate from late-night activities; my recovery time after illnesses is longer than previously thought; when I am sick, the effects of fibro are twice as bad; and I simply can’t do as much as we thought I could do in general.

What I am asking is that y’all be patient with me. I am going to have to say “no” to activities more than I want to; I am not going to be able to plan parties and get-togethers like I used to. I am not going to be able to go out as much as I would like, or hang out with peeps as much as I would like. I am not going to be able to travel as often as I want. I can’t do these things because the repercussions are getting worse and worse. Every time I get sick, my symptoms are more exaggerated and it takes longer to recuperate.

It’s not that I don’t want to see you guys; I do. I miss you guys a lot. I miss seeing my family and friends. I miss spending time with you guys and having fun. But I just don’t have it in me like I used to, to do things the way I used to. I don’t have the tokens, I don’t have the strength, and I don’t have the wherewithal to explain this whenever I have to say no; it makes me sad that it’s come to this. But this body, this one body I have, as Sally Field says on the Boniva commercial, doesn’t work right, and I have to care for it the best way I know how.

Does this mean don’t invite me to things? No. Does this mean I’ll say no to every invitation I receive? No. Does this mean I’ll never throw another party? No. Does this mean I’ll never travel again? No. It just means I have to be *very* careful, and I’m asking for you guys to understand and be patient with me. Please keep inviting me to stuff, so I at least *feel* normal. Please trust that, from time to time, I’ll plan stuff – I just have to be very careful. And remember, I am always with you guys in spirit. And I want to be there for my family and my friends – but in order to do that, I have to be very restrictive and careful. And I am sorry.

If you can’t cope with this fact, now is your chance to walk away. I bear no ill will, honestly – I know this situation can be hard to understand and more difficult to deal with. If you can’t deal with it, here’s your easy out. But if you can cope, and you do want to stick around, well – thanks. It means more than you know. *hugs*