please understand!!

These are some things that I would like people to understand. Please understand that being sick does not mean I’m no longer a human being. I have to spend my day in considerable pain & exhaustion and if you visit I probably don’t seem like much fun to be with, but I’m still me. I still worry about life, my family and friends and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between happy & healthy. When you’ve got the flu you probably feel miserable with it for a week or two, but I’ve been sick for year. I can’t be miserable all the time, in fact, I work real hard at not being miserable. So if you’re talking to me and I sound happy, its means I’m happy. It doesn’t mean that I’m still not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say “oh, you are sounding better! I am not sounding better, I am sounding happy. Because will I am truly blessed. I’m blessed with the most amazing people in my life that truly love and care about me.

Please understand that being able to stand for 10 minutes doesn’t necessarily mean that I can stand for 20 minutes or an hour. Just because I was able to stand up for 30 minutes yesterday doesn’t mean I can do the same today. But I do it and I push myself, because I’m not going to not just live life anymore. With a lot of diseases or disorder one is either paralyzed or they can move. It’s far more confusing: one hour or day or week I may have normal or almost normal mobility; the next hour or day or week I may be unable to sit, stand, walk or even get out of bed. I have good days and bad days, and during those good days I may truly not look sick.

Please understand that making plans other then immediate ones is a crap shoot at best because I can’t know how I will feel or what my physical condition may be. Please don’t think that I’m trying to put you off because I don’t know if I can honor them. 9 times out of 10 I can because I suck it up and do it only because I am a fighter and stubborn and will do it know matter if it kills me. I have to suck it up and I have learned to live with it.

It is quite possible, that one day I can walk to the park and back, or swim 12 laps, or even walk with my dog; while the next day I may have great difficulty getting out of bed, walking to the kitchen, or be unable to walk at all without help. Please don’t get annoyed when I can’t do today what I did before by saying "but you did it yesterday!" or "you did it before!" Your frustration can not begin to compare to my own frustration. The very act of planning while not knowing what condition I will be in is stressful and tiring in itself. If you want me to do something with you, or go someplace with you... ASK if I can. I may dearly want to go, but simply be physically unable to do so. Understand if I have to say no today, but please ask me again soon.

Another statement that hurts: "You just need to push yourself more..." Obviously, this disease directly impacts muscles and mine do not regenerate as quickly as yours do. Pushing beyond comfortable physical limits can be dangerous and cause a severe relapse. On the other hand, doing what I can when I can is excellent therapy both physically and mentally... and I do! If I work at a part-time job for 4 hours one day, my fatigue level is greater than yours if you worked a 12 hour day. Many days I can still do anything I ever did as well as I ever did ... but only one thing per day or week or month. Everything drains and exhausts me exponentially more than a normal, healthy person my age (whatever age that is); my recovery time is also exponentially greater. If I go to a party or dinner and show tonight for several hours and have a wonderful time, I do so knowing with 99% certainty that tomorrow I will need all day to rest and recover, much of it spent lying down. My emotions escalate when dealing with days on end of constant pain and limited mobility. I am NOT tired because I am depressed! I am moody and emotional because I am so tired.


When we are together, please understand when I say I have to sit down, lie down, get a drink, take these pills, or get into a cool place that I have to do it and do it now! No, I can’t walk another 5 blocks to the car, or walk back down the hill I just climbed up. I am very proud and never want to be a burden. My independence, or what I can retain of it, is of paramount importance to me! Please help by listening to and believing what I say I need and act upon it accordingly and as quickly as possible. You would’t question a known diabetics request for orange juice or insulin, so please don’t question me or urge me to ’keep on... we are almost there!’ Not unless you are prepared to a) carry me the rest of the way or b) call 911. I can not wait, nor does my pain forgive... when I say "please ... now!" it means now.If you want to suggest a cure to me, don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my family suggest something at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even markedly helped, I would know about it. If you still insist on promoting ’cures’ to me or giving me this will make you better advice, do so; but understand I won’t rush out and try it though I may well continue to research it on my own and discuss those findings with my doctors. I need you as much as possible, treat me as normally as possible, enjoy me and allow me to enjoy you as much as possible, and.... as much as it’s possible...

I need you to understand me & not get mad over my emotions!!!

xoxox smooches