All The Small Things

You hear people say this, and tend to roll your eyes.  I know, I've done it myself in the past.  I've seen people do it too many times to count.  The little things in life, are all too commonly taken for granted.  People don't realize this though.  Even when it's told to them, they kind of nonchalantly stare past you while nodding their head up and down and grunting something that's barely audible as a "yeah".  

I'm here to tell you though, that the little things really do mean a lot.  Living my life with chronic pain and fatigue illnesses shoves just how true this saying is, right down my throat on almost a daily basis.  I said, and have written many times, that I'd give anything to have just one week, or even one day, where I could do the little things in life without paying for it with unrelenting pain and fatigue for days after.  I got my wish.  This past Thursday I had more energy then I've felt in a long time.  My pain level was low.  I honestly couldn't believe it, seeing as how I've been stuck in a pain and insomnia flare since my husband left me on April 8th.  My energy and low pain level lasted all day Thursday, Thursday night, and Friday.  Friday night though, I went to stand up and had to push & pry myself out of my chair while loudly exclaiming "Ouch!".  My knees were so stiff and hurt so badly.  Usually once I'm up and take a few steps, the pain diminishes until I go to sit down again, then the bending motion of sitting makes me say "Ouch!" one more time.  Not this time though.  My knees stayed stiff all the way to the kitchen and all the way back to my chair.  Each step caused excruciating pain.  I sat down and mentally cussed to myself that the pain & fatigue couldn't have held out for another 24 hours.  See, my youngest daughter turned 17 this past Saturday.  She was having a bonfire birthday party Saturday night to celebrate.  I held on to hope though, that I'd wake up Saturday pretty well pain free again.

I went to bed, mumbling the prayer to please allow me to wake up Saturday with energy and low levels of pain. Every year on their birthday, I allow my children to pick what they'd like me to make for supper that night.  My daughter had requested my home made broccoli, rice, and cheese casserole.  It certainly is good, but a ton of standing to chop the onion and celery, and a ton of standing and stirring until the cheese is melted.  I also had to make her birthday cake on Saturday.  Saturday rolled around, and as I got out of bed I knew I was once again doomed.  My body hurt. I was so tired that I felt like I was in a fog.  I felt as if I hadn't ever gone to sleep the night before, and like I was outside of my body watching it move around.  Regardless, I had these things to do and just had to do them regardless of how I felt.  

I've always loved baking.  I've always loved celebrating my children's birthdays.  The fact that I couldn't do things that I always enjoyed, was like a kick in the gut.  Fibromyalgia and arthritis once again had stolen my joy.  I really had to push myself to get the things done that I needed to do.  I kept angrily thinking to myself "Yeah, of course!  Of course the break in pain and fatigue couldn't have held out for one more day.".  In the middle of my self-pity episode though, I stopped myself and thought "What are you doing?  You've wrote, prayed, begged for just one day without the horrible pain and fatigue.  You got more then one day. You got a day and half reprieve from it.  Don't be greedy Amy.  Be thankful.".  That stopped me from the stomping around and feeling sorry for myself.  I even felt kind of guilty for being angry that the reprieve didn't hold out.

After pushing myself Saturday and Saturday night, I'm still paying for it today.  I'm so stinking tired.  I didn't get out of bed until 1:38pm today, and yet I feel like I'm walking around in a fog.  I can't concentrate on anything.  I've been trying to write this blog post for over an hour and a half now, and this is all I've wrote.  People take things like writing something they want to say for granted.  Things as simple as baking a cake are taken for granted.  People sometimes say "I don't feel like cooking tonight, let's just go out to eat".  The fact that they can cook if they so choose, is taken for granted.  For me and people like me, we'd give anything to be able to go stand in the kitchen and cook a meal.  To prepare the meal without it causing such pain that we are literally in tears.  People always complain about hating to do their dishes or their laundry.  At least they can do their dishes and their laundry.  

Today is Tuesday, and just from making a casserole, baking a cake, and cleaning up the mess and dishes from the casserole and cake on Saturday, I'm still paying for it today.  I hurt.  I'm beyond fatigued.  I can't concentrate.  I can't accomplish any major task today without it being extremely mentally and physically hard for me.  I'd give anything to be able to do simple, everyday things again.  Things that others look at as a chore, I'd be tickled pink to be able to do.  Until you live your life trapped within pain and fatigue, you really don't understand how little things mean a lot.  The next time you have to fold and put away your laundry, stop and think about this post.  Instead of huffing and puffing and thinking how much you "hate" doing this chore, stop and realize how lucky you are that you are able to do the chore without paying for doing it, for the next few days to few weeks.  Start thinking about your life, and appreciating all the little things that you're able to do.  They may not be "fun" tasks, they you can do them.  

Days like today, remind me why I push so hard to try and book chronic pain seminars.  Days like today, remind me why I'm so desperate to educate family members, friends, the communities and health care workers.  Lawyers, lawmakers, pharmaceutical companies, and legislature, about life with a chronic pain and fatigue illness.  As I always say, if we can't make others understand then we won't even have a prayer of finding a cure for these illnesses.  We won't have a prayer of finding a concrete treatment plan that relieves us of the symptoms that plague us.  Education is key.  As my photo below says, "Education is key.  Without education there won't be change.  Without change, there won't be research.  Without research, there won't be a cure.".   I'm not a pushy type of person at all.  In fact, there's no way I could make a living in sales.  No way.  I'm just not the type of person that could approach someone and try to push them to make them "buy" something.  I also hate confrontation.  I despise asking for help or accepting help.  Accepting help really hurts my pride and makes me feel inadequate that I needed help in the first place.  After telling you all of this, I hope you see how far out of my comfort zone I've gone, to ask for donations to help me get going in presenting my chronic pain seminar.  I hate asking for donations, and it honestly really does hurt me.  Still, I've sucked my own feelings up and I've asked for help.  I'm still asking for help.  This seminar, and the hope of finding a cure for my illnesses outweighs my own "pride".  I'm not doing this just for me though.  I'm doing it for the 1,000's of people like me, who suffer and struggle to make it through a day.  It's no wonder why depression runs with these illnesses.  Wouldn't you too be depressed, if you had to live every day in pain?  If you had to live every day being more tired then when you went to bed the night before?  If you couldn't even stop and appreciate the "little things" that life has to offer.  Once again, please share this blog and my mission with every friend, relative, business, organization, etc that you can.  If everyone would donate even $1 to the chronic pain seminar fund, it would add up quickly and I'd be able to start presenting this seminar and advocating for more research.  I challenge every person that reads this post, to donate $1 to the fund and to challenge all of your friends and family to also accept this challenge.  The link to the seminar donation page is on the right hand side of the home page or on the right hand side of the "Chronic Pain Seminar" page.  It's the Go Fund Me link.  Please feel free to download this photo and share it within your networks.  I took this photo myself (another small thing that I struggle now to do - photography) and the words are my own so there isn't any copyright infringement to worry about.

All The Small Things

Ok, I realize that the song doesn't have the meaning I'm talking about in this post, but I love it anyway and the title fits LOL.  Living with chronic pain I'm reminded almost daily of all the small things that I can't do now.  Or that I can't do without causing my body pain and sometimes setting myself back a couple days in a row afterwards.  The heat and humidity?  It leaves me completely wiped out, plus affects my asthma/COPD.  I walk around sounding a bit like Darth Vader.  Walking around the block?  Somedays I just can't.  I couldn't make it across the street.  When I do, I'm left completely exhausted for the rest of the day at least.  Sometimes the following day or two too.  Setting up a yard sale?  Yeah, I couldn't.  I helped with a few things, but overall my kids set it up.  The little bit I did do, still  has me completely wiped out.

Doing something as simple as laundry I sometimes can't do.  I have to have my daughter switch the clothes from the washer to the dryer, then take them out of the dryer for me.  My back pain won't allow me to bend and stoop to do it.  Sometimes it even hurts my arms, from reaching and outstretching them.  Sometimes bending to this, or other times leaves me dizzy. 

A few minutes ago I walked out the back door to turn the hose on.  We're in the process of filling our above ground pool.  I turned the hose on, then came back in here to sit down.  I'm completely exhausted now.  My head is even hurting since doing it.  How ridiculous is that?

My old rheumatologist and the new one both asked me if I have chest pain.  I told them both no.  Starting this past Wednesday though, I've had bad chest pain several times a day.  I guess I get to add that to my symptoms when I have my next appointment. 

About a week after my last appointment in February, I started experiencing Fibromyalgia Numbness in my left hand and fingers.  It was so bad for awhile, that I couldn't hardly type.  It was the weirdest sensation to have, and to have it just stay like that.  Eventually, it started getting better and was almost completely gone.  Now, it's starting to come back again. 

Some days, It hurts my arms, hands and fingers to even type.  I couldn't do a blog post, without causing myself severe pain.  Almost daily my arms ache and hurt too much, that even reaching out to take a plate out of the cabinet hurts them.  To make supper, I have to take a pain pill about 30 minutes prior, then I'm still usually still in such pain that I'm blinking back tears before I'm done.  That's the only meal I cook.  Everyone has to fend for themselves for breakfast and lunch.  Running a sweeper?  Forget it. I'd be down the rest of that day, and usually the next too.  Even standing up and sitting down causes me a lot of pain.  My poor knees snap and crack and I have shooting pain. Shaving my legs?  I usually can't without help.  Now the I'm getting a divorce I don't have a choice.  It took me over 30 minutes and completely wiped me out.  It also gave me charley horse type cramps in my stomache, sides and back.

There's more.  Many  more simple things  I can't do now, or do with difficulty and hurting myself.  A few weeks ago, when I went grocery shopping I was in such pain and physically exhausted afterwards, that on the way home I started crying.  I couldn't help it.  The tears were just silently running down my face.  That particular incident really hit me hard.  It showed me how difficult living my life without my husband was going to be.  We always went grocery shopping together and if I needed something that was down low or up high he got it for me and put it in the cart.  He'd put everything on the register belt to be scanned, then put all the bags back into the cart.  He'd load it from the cart into the car, then bring it inside the house for my daughter to put away. 

If I can't even do the small things in life, how am I supposed to live?  How am I supposed to do this thing called "Life" being single?  What will I do when all of my kids are grown and out of the house?  My youngest is 16 years old.  She'll be a senior next year, then off to college.  It may sound dumb, but I actually feel panicked when I sit and think about it.  -Yep, that dang anxiety that accompanies fibromyalgia.  Sitting here writting this out, has tears stinging my eyes that I keep blinking back. 

People who don't live with a chronic pain and fatigue condition will never understand these things.  Reading it, may not even sound realistic to them.  I could see someone reading this post and saying to themselves, "That's absurd. This lady is just lazy.".  I assure anyone who may be reading this, it's all very real.  Do I like it?  Heck no.  I hate it!  I hate fibromyalgia.  I hate COPD.  I hate arthritis. I hate IBS.  I hate all of these, among other illnesses and diseases.  I'm not sure how to live my life.  I'd like to think that I could figure out ways to still live a fullfilling life, but I'm not sure it's possible.  I'm not sure it'll ever be possible in my lifetime.  My hope, my prayer though, is that with enough awareness, education, and advocacy that maybe more money will be dedicated to research so that by the time my daughter is my age, she may not have to live her life in the mannor I'm living mine.  She has PCOS, and after I was diagnosed with fibromyalgia I'm pretty sure she has it too.  She'd been through all kinds of tests, including expensive tests that had to be sent away to see if she had any type of muscles disease to cause her pain in her muscles.  My rheumy won't see children though.  I need to find one that does and have her tested.  Please, advocate for a cure.  Spread awareness.  Educate those who have misconceptions about our illnesses.  Try to get them to understand.