Today I went to pick up a sandwich for lunch. While there I was talking to someone I know who has just found out she has Fibromyalgia. While talking with her, it came up for my mom, who has had this for years, to talk with her and let her know some of the symptoms she feels are indeed real. The thing it brought to my mind, was when I first learned I had RA.
I was a very fit, very active person, when suddenly in my mid 20s, I started ‘pulling’ things - hamstrings, shoulder, tendons, etc. Or, at the very least that’s what I was told it was. After several (approx.3) frustrating years of people telling me I was needing more exercise, etc and my leaving in tears (and 40 lbs later) I went to this small clinic out of the way, paid 15$, and found my answer.
I was called at work the following day with the information that I had Rheumatoid Arthritis and needed to see a specialist. I remember crying, and didn’t know why, because at that point I had NO CLUE what RA does. When I asked, they simply told me : a degenterative chronic condition which normally cripples over time. WELL, this didn’t sound fun to a woman who had tons of energy!
Bottom line, it hasn’t been fun. I’ve now had it over 20 yrs., and it has definitely worked it’s spell on me. I don’t even recognize myself sometimes, but the worst part is knowing that my kids (being in their 20s) don’t really know who I even am (on the inside). Probably the most frustrating part is that the people around you don’t realize you can go from “fine” to “can’t walk” in a 20 min period of sitting down.
You see, there is NO band-aid on RA or Fibro. They cannot see it. Therefore, they cannot understand it. My good days could sometimes put a grown man in bed crying. My bad ones, he probably couldn’t handle. HOWEVER, there is an up side. Crazy right?
I have learned more about myself, and my own will and determination in the last 20 years than I ever would have without the RA in play. I have learned that I am very patient, very flexible, very creative, and yes even very determined. I was told at 30 that by 40 I’d be in a wheelchair permanently. I said “hide and watch”. I am not. Nor do I have any intention of being there at 50. I can fight this with will.
I know that people have many frustrations with these chronic conditions. I know the biggest probably being that nobody understands how actually bad you do feel. I am no doctor. I don’t have answers. But what I do know, is that state of mind is the key. You are still beautiful, you are still functional, you do still have some control.
Sleep when you need to sleep, be it 15 minutes or 5 hrs. Sometimes that even turns into sleep when you CAN sleep, since even a bed sometimes puts too much pressure on you. Air yourself out….don’t give in to the ‘hermit’ and forget to get fresh air…you will be depressed in record time. Don’t quit going out. So easy to give up committing to anything because you are no longer dependable. But, don’t give up the spur of the moment fun…keep going! Learn to say NO….stress (argh~) is your enemy. Listen to your body, but don’t forget to run with your heart.
Lastly, find someone who does understand when frustration hits because you cannot squeeze the toothpaste or button your shirt or remember your dogs name. You are not going crazy or lazy. My mom calls it ‘fibro-fog’…I call it ‘rheuma-fog’…but whatever you call it……it is by all means real.
SO finally, as for the reason I’m writing this, if I can give a spot for you to find like minds (or mindless as the case may be) to talk to about what you feel, all the better. Good luck!
