Sucks to be me right now.

For the past 3 1/2 hours, I have been itching all over my body. No signs of a rash. I didn't use anything different. I haven't taken or eaten anything different. Benadryl hasn't done anything to help. I'm about to lose my mind - distractions aren't working well either. I'm tired, frustrated and ITCHY!

UPDATE: The itching went on for about 2 days and then just stopped rather abruptly. Still don't know what caused it or cured it.

I wrote this a few weeks ago...

"Chronic pain and chronic illnesses are not for the weak."

I read this statement somewhere and it really resonated with me. Some of the strongest people are the ones dealing with chronic pain and illnesses. I can't imagine a weak person surviving or thriving in "our" world. There is nothing weak about being sick. You have to fight for yourself 24/7. Some fight to breathe, others fight to move, some fight for that moment of relief from pain, and still more and more just fight to live and see another day.

Too many people take for granted the good health they have. I watched people at the pool the other day just going about as if they had no care in the world. I wish I could do that, but I'm always planning and preparing for what may or may not happen next. Did I bring my meds? I hope my legs don't give out when I stand up. I have to remember to wear my pool shoes because the concrete kills my feet. I can't go to the lazy river until the line is shorter because I can't stand that long. I hope the kids aren't mad I can't keep getting in and out of the pool. I really can only get in and out of the one pool, which has a handicap ladder, because the ladders on the other pools are too slippery and my arms & legs aren't even strong enough to pull up my body. Did I take my pills yet? (I have to write down when I take anything because I can never remember, ever.) I feel okay, should I just stay or maybe I should go so I don't overdue it - I could bottom out at any moment. And, it goes on and on...

All this thinking is exhausting and there is usually no end to it. I'm always thinking a few steps ahead of myself. I do this for all situations. Going out is the same way. I have a mental checklist: handicap placard, cane, meds, bottle of water (for meds), sunglasses, purse...etc. Granted I don't always remember everything, but I try really hard to make sure I do. I also plan my route. Going one way versus another to save time and even down to how I take on a store. I know right where to park and what side I need to be on. Planning has become my key to dealing with limitations brought on by disease.

THE QUESTION:

"My doctor says I need to exercise and I'm having a hard time. It's really hard to be sick and then they want you to exercise on top of it. Any suggestions?"

So, there are these people out in cyber world, on the chronic illness bb's, that just piss me off. Yeah, I don't even know them personally, but they irk me really bad. See, I'm all about and for searching out information and asking lots of questions. I think a simple "thank you" is enough, even if you are not or cannot really use the information, and just move on. Well, this little group likes to ask for help/advice, specifically about exercise, but they have an ulterior motive. They don't want to hear that there are ways to exercise even if you have a chronic condition. They are actually looking for answers like: "I can't do exercises either." "I'm always worse off when I exercise, it can't possibly be helping." "I don't want to waste my life in bed being tired from exercising." So, you're thinking why are they looking for these answers rather then the lengthy, information filled suggestions that myself and others take time responding with?

IT'S ALL ABOUT SEEKING APPROVAL.

They want consent, if you might say, from other people that what they are doing (ie: nothing) is okay. They no longer feel lazy because they've been vindicated by these peoples reactions and they think it's acceptable to keep going along the way they are.

Here's how the final response typically goes:

"Yeah, thanks for your comments (poster should have stopped right here, but oh no, here comes the big "I've found my group of equals to make me feel okay for not trying"). I knew it wasn't just me. How can they (means doctors) expect us to do this stuff (exercise) and have a normal life. I just can't see me doing that (I assume she/he means the suggestions given), so I will do what I want (ie: nothing)."

MY CONCLUSION IS THAT PEOPLE CAN BE FREAKING LAZY.

I have chronic illnesses that have beat me down, racked my body, and caused muscle inflammation & wasting. I have and continue to live in pain every second of every day. In the beginning, I couldn't exercise, but I searched for as much information as possible. Exercise was going to become a necessity. Why? Well, in order for my muscles to not atrophy (waste away) any further I could do something. Also, muscle wasting is one of the few things that can actually be reversed! How cool is that?!?

My advice - simplified - start small and very basic. Something simple and small can be a few leg lifts while lying in bed or some simple stretching. I did a series of stretches and lifts in my first months of illness. Then I got wind of aquatic classes through the YMCA. I've done them off and on over the years. Lately, I use the treadmill and a recumbent bike. The workout is NEVER easy, but the ultimate payback is priceless. I FEEL better both mentally and physically.

Don't you think these people would want to feel better too?

I've been busy taking better care of myself, therefore, lack of blog entries.

I've been trying to get myself back on track with eating and exercising. So far, so good. As it was pointed out to me, this is a recurring theme on my blog: Starting a diet/exercise program and then...
...
...
...nothing.

EXACTLY! I start, I stop. I can never seem to make it stick even though I KNOW I feel better in every way. So, here we go again with the start of trying it yet again. See, it's not that I go crazy eating, but I get bored and I just munch. Plus, like most people, I don't always make the best decisions when it comes to eating out. Also, my Mom sometimes makes it a little bit more difficult to stay on track. She is a feeder. You know, the Mom who is always offering food and insisting that a little bit more is okay. The worst part is that she is an amazing cook and baker, which makes it difficult to turn down.

Well, my Mom started out doing the WW thing with me and then we just trailed off into old eating habits around the 4th of July. Neither of us has put back on any of the weight we took off, but we just couldn't get back on track. I finally just got it together a week ago and decided, with or without her, I was back on track. She is somewhere in between and trying to make good choices, but still buying 4 pints Ben & Jerry's (!) that none of us needs. I haven't and won't touch it either. She even asked me the other day which flavor of this dessert I would prefer. My answer was, "I like lemon, but I won't be eating any of it." She rolled her eyes at me - a feeder doesn't like to hear you won't be eating their food. Btw, the dessert was never made! Oh! Then there was the night we were going to "celebrate" my sister passing a nursing test by eating "whatever we wanted" - her words, not mine. I said. "I can't be celebrating every little thing. I've got to stick with my points and I'll just eat something here." That didn't go over well, but my sister saved me and said, "I really like _____ from Applebee's." Thanks sis, because Applebee's has WW meals, so everyone was happy again.

No one ever said dieting is easy.

The best advice I've been given about dieting was, "Think of food as fuel and nothing else." I had heard this many times before in my life and my boyfriend likes to tell me it too. I agree it is a good way to think about food, but who actually thinks that when there is (insert your favorite food here) in front them. I have to admit though, when you think of food as fuel, you are more apt to make the better choices. You want to eat what's going to give you the most energy and fill you up. Eating the empty calories just isn't that appealing.

As I mentioned before, boredom is my biggest challenge. I have A LOT of time on my hands. When I first got sick, I used to think about everything that was taken from me: independence, mobility, health in general, social life...etc. I would rationalize that it was okay to eat whatever I wanted because that was the only pleasure I had left. I didn't go nuts, but I never turned down anything my Mom fixed for me. Once I started moving better, got off the steroids (which did not help with keeping my weight down), and started to feel better in general, then I dropped 35 pounds. I felt great, but then I stopped. No rhyme or reason. (I have never put that weight back on and I have even lost 15 more pounds this year.) As long as I pay attention to what I'm eating, I'm okay. When it comes time that I'm alone and bored out of my mind I start to pick at stuff. A little but of this, a little taste of that. So, I needed to find things to fill my lonely times. I have started putting puzzles together. I read a lot more. I visit chronic illness bulletin boards, as well as, weight loss boards. All of these things keep my hands and mind busy.

Next blog post I need to VENT about the people who ask exercise advice on the chronic illness bb's, but are only seeking other people to re-assure them exercising is TOO much for those with chronic illness. It's driving me nuts!

My Rheumy gave me Zanaflex, a muscle relaxer, for my pain. The idea is that if my muscles are relaxed they won't hurt as much. So far, I've had hit or miss relief - basically it will work and then the next time I take it nothing happens. Bizarre. I'm going to do a little research on this drug. She did give me a little lee way with the dosage and told me what the daily limit is. I've gone nowhere close to that number. Anyway, I think it's going to take a few more trials before I give my final verdict. In the meantime, I climbed back on the treadmill today, plus rode the recumbent bike. Total of 30 minutes all together. I feel pretty good mentally, but physically exhausted, of course.

With a new day came some much needed relief and a little extra energy!

The pain has subsided to a tolerable level. I can at least get out of my pain pill fog and just stick to Advil. I actually felt good enough to clean my bedroom, bathroom, and living area. It's a big undertaking, but I'm so particular about how things are cleaned that I almost never let anyone else do it. I like things to be clean and neat. I don't like clutter at all. Something about things being out of place or dirty just makes me really anxious. I guess on some level I have a little OCD. Oh well, I'm not harming anyone or myself with the need to be neat and clean.

I am, however, all out of energy again, but it doesn't matter because everything is done. I can rest and relax with ease. Tomorrow I have a doctor's appointment and I'm looking forward to discussing my pain issues with her. I don't understand how one day Darvocet works great, like yesterday, and another day I may as well be popping sweet-tarts!

"If I knew what made a decent day, don't you think I would have sense enough to do the same thing every day?" - R. Finch

One day we do things a certain way and all is good and peaceful. We try the next day to do things the exact same way and all hell breaks loose. There is no exact science to managing a chronic illness. If you try to tell me there is, then my Myositis and Fibromyalgia friends will have to hurt you. :-)

A little reminder...

Yesterday, after sleeping off and on for nearly 2 days, I woke up and decided to take my nieces to the pool. This is no easy task for me, but I felt I had it in me to go for it yesterday. We changed and packed in no time at all. We were out the door before my Mom even knew what was going on.

We arrived at the pool just after they opened and found a nice spot in a shaded area. The kids ran off the minute we dropped our things, so I went ahead and began to set up our stuff. Not even a second later I hear Jada screaming. She's heading towards me with her arms out and tears streaming down her face. Some lady behind her says, "She tripped on the hose!" She had tripped on the hose and scraped up both knees, a shoulder, and her hands. Here's the friendly reminder I mentioned above...she reached up for me and I instinctively reached to pick her up and I couldn't. I couldn't even lift her an inch up off of the ground. She is 6 years old, thin as a rail, and I couldn't move her. I did this half drag thing and got her into the chair. All the time I am consoling her, I'm really pissed off because I couldn't initially pick her up and comfort her. Damn these diseases and damn the strength that I have lost. Thankfully, there was nothing more than the scratches and she bounced back rather quickly with a little TLC from me and her sister.

That instant at the pool reminded me of when Jada was a baby. She had a crib set up in the room next to mine at my parent's house. I was only in the first year of my illness and I was really bad off. I would often hear her cry before anyone else would, so I would usually wonder over and check on her. She would always stop crying but just sit there in the crib. She never stood up or reached her arms out because she knew I was the one who wouldn't/couldn't pick her up. She didn't get angry or mad, but just smiled at me. She knew, at such a young age, I was there for her but I couldn't move her. That was a really crappy feeling and it all came back yesterday.

Sometimes I can pick Jada up, but it's only on those rare occasions when I have strength that comes from God knows where. Yesterday, when I needed it the most, it just wasn't there. Tomorrow it could be there or maybe not. I just never know. I guess what is important is that I can at least BE there. Maybe I can't do it all, especially the physical stuff, but damn it, I certainly try to be there for those kids in every other possible way.