Wednesday, June 28, 2017

Gosh that felt good

I even surprised myself today. I was leaving a store and ran into someone I haven't seen in a while. After a few minutes of chit chat she  asked me how I was doing and I answered, "Better." I didn't think much about my answer until I got n the car. I realized it was probably one of the first times I said better and actually meant it. Wow, what an eye opening answer. At that specific moment I really and truly felt better. Now that I've been home a bit my answer probably would be more of an okay than a better but that's the way it goes. Okay is the usual answer when I'm asked how I am. Up and down is a way of life for me now. It's seems when I'm better I am able to live easier on my terms not the worlds. It still is very thought provoking for me when I say I am better and people think I am able to do all the things they want me to do. I can't, and I still have to let people down easy when they assume my better is some sort of availability to them. Sure I would love to meet everyone that wants to meet me for lunch or dinner but it just isn't possible anymore. Sometimes I wonder if my saying yes to everyone my whole life got me here. I know it didn't cause my disease but I'm sure it didn't help the process much. I have finally learned that I have to put myself first and everyone else second, with the exception of my immediate family because they will always come first.
When pain becomes a way of life it's the days that are better that you are able to see things clearer and grab for the stars. If I have a better day I want to do as many things as I possibly can on that day. The problem is when that happens it causes me to have more pain and fatigue and bad days to follow. It's such a vicious cycle like a wave going in and out at sea except your wave is a jumbled up mess. Illness comes in waves that you have no control over. Too bad treatments and living right can't fix it all. You have to learn how to do that in your head by not letting it eat you alive. The metal fight is harder than the physical. The perfect example from my perspective would be comparing it to a dental procedure I had done yesterday, another never ending problem for me. I had to laugh because I thought the pain was going to be bad because of how the produce went but to my surprise minimal pain. The more I thought about it I wondered if because my pain tolerance is so high I didn't really notice the pain like most people would have. I think my RA has made me much stronger mentally and physically. When I watch shows where men are freaking about about needles my first thought is, what a wimp. I think my disease has kind of hardened my heart even though I hate to admit that. When I hear people complain about some simple issue like a cold I secretly roll my eyes I have to pull back and remind myself for them it is hard. I've always been a very compassionate person but over time my disease has robbed some of that from me. It's sad really. I wonder if that comes from being so tired of fighting everyday that I just don't have the energy to expend anymore on too many others. Whatever it is it still makes my heart sad that I'm getting too tired to give that part of myself out to people anymore. Like I always say I do the best I can with what I have and if people don't understand anymore I can't do anything about it. I know my circle. The ones who's truly understand and care and because of them I am more blessed than I ever have been. Press on my friends! You got this! We got this! Don't let anyone or anything hold you back. Hopefully we all have better days where we can honestly have the answer better when we are asked how we are doing.
God Bless!

Friday, June 23, 2017

Ever Changing World

Yesterday I made a quick run to the store for a few items. I'm making my dads Father's Day dinner this Sunday because we were so busy last weekend all we had time for was a quick visit. Authentic Hungarian cabbage rolls that I'm sure won't taste nearly as good as his mother's did but it's worth a try. Either way I'm sure he will love them. It's funny how when you get older you appreciate all the little things and you don't get so worked up about them like you use to. It's seems especially true since my dad was diagnosed with Lewy Body Demencia with Parkinson's symptoms. It's not easy watching him get worse as time goes on. If something as simple as some cabbage rolls will bring him joy then I'll do it. Time flies by and it's the one thing you can never get back so it's worth my time.

I rushed through the store and threw the few items i needed in my cart and rushed to the checkout. My energy was good so I decided to do the self checkout. Believe me there are many times I don't use self checkout because my energy is low and I just don't want to deal with it. I pulled my cart behind a older, like in his eighties, man. He was finishing paying so I figured it would be fast. I failed to see all the groceries he had at the end of the belt that needed to be bagged. I secretly thought to myself ugh he's moving S-L-O-W. I started to feel a little anxious and pulled myself back to the reality of, "What do you need to be in a rush for? Big deal so you have to stand in line three minutes longer." I stood there looking around watching people which I find fascinating in itself. The few extra minutes went fast and before I knew it was was punching in my mperks numbers and on my way. I was so focused on the screen I didn't see the older man approaching me. I grabbed my first item and turned to scan it and realized he was standing next to me. He smiled and said, "I just want to thank you for being patient while I packed my stuff. No one ever does that usually they are pushing my stuff out of the way so they can start their order." I told him, "You are fine, don't let people bother you." He thanked me again and left. Wow, Bam right upside the head. When I compared the thoughts I had when I first pulled up to the checkout to the thoughts I had when I left the checkout there was a stark difference. I thought about it most of the day yesterday. Realizing, as I do almost every time I am out in the world, the sadness of how we treat one another, young or old. The selfishness of everything we do. The ME first get out of my way attitudes that consume us. I realized I need to be more aware of my own selfishness in all the little things I do. 

The next step was comparing my illness to that of the older man. I know there are the times I'm parking or shopping or driving that I take much longer than I should. It made me realize I too probably piss people off much more than I think I do. It takes me longer to think and concentrate these days so there are the times I might sit at a green light before I hit the gas and get the beep from the car behind me. The busy people who can actually live a normal life and not have to think about health can be the cruelest. I usually have a few choice words when I get beeped at because I really don't care anymore if people can't understand what I deal with. When the older man approached me I realized he is no different than me. He deserves the compassion I and all people deserve. If there is one thing I wish I could do to change the world it would be for all of us to treat one another like we treat our friends. Obviously we can't treat everyone like we treat our family because who else would you die for? So let's stick with the friends. Being more patient. Being more kind. Realizing we are not at all alike and accepting that about each other.
Think it will ever happen? I don't know but I'm going to keep working on it.

God Bless!


Thursday, June 8, 2017

Same ol' Same ol'

I don't run to my blog as much as I use to. I'd like to think it's because I am doing so well so there is no need to come here to write all my woes for the world to see. It's not. Mainly I think it is because I am so drop dead tired that the thought of processing enough words to explain what is going on is too overwhelming and exhausting in itself. I am trying to come to terms with the fact that this fatigue is something I am going to have to deal with, forever. That sure isn't very easy to accept and move on with.
My last appointment with my rheumatologist made that reality a little more real for me. My doctor told me that every patient has a fatigue baseline. Putting it in terms I can understand; this is it darling. You're at your baseline. Surly not the words I wanted to hear when he told me at my appointment before that the new medicine I am on may help with the fatigue. Of course I would be one of the lucky ones who gets no fatigue relief. Honestly, I can handle the pain but the fatigue is too much. I'm working on the acceptance of this. In the meantime it makes me very anxious and depressed. I try not to let this disease do that to me but I am human and there are the times I get knocked down just like the rest of the world when things don't go according to "My" plan. "My" plan, Ha. "My" plan is the joke in it all. "My" plan never works. If it did I would be cured by now. I try to do most things right on most days, no ones perfect. We all know that part is impossible. Although I do have a few friends who remind I am perfect, joking of course. Their laughter is what helps me keep it together.
Then there are the times I think that my own thinking is what brings me down. Always trying to be the best at everything only to be let down when I can't be. One example would be exercise. I have started walking more because we all know exercise is the cure to everything. Ha on that too. The only problem is I can go out for a walk with the mentality I am going to go for that thirty minute walk and after ten minutes I am weak or I can't breathe. Those are the times the fatigue and beating myself up hit hard. Wanting in my head to do it but my body pulling me down and making me go back in to rest. The acceptance that I am not like I use to be. It's funny how after years of this you would think it would get easier to accept that I can't do what I use to do. It only seems tougher to handle the longer times goes on. I almost feel like I am getting numb from trying to understand it all. I think when you deal with chronic conditions your brain overthinks everything. The why's, the how's, the reason's, the everything. Trying to shut it off is impossible because your body is always reminding you it's there. There are days it speaks louder than others but it's always there. I wish I could have the magic answers but they never seem to come. I'm sure this is something all of us deal with in our daily living whether it is medical issues or other issues we are slammed down with. The only thing I can do for myself is to continue to keep doing better. When I am home I do all things I like to do mixed in with a little housework here and there. On good days it's helping someone who needs help load their groceries in their car. Or a big smile for the McDonald's worker who hands me my luscious coffee as I have drool rolling down the sides of my mouth. Smiles are contagious you know because you'll always get one back, try it. I chose to always make it something for someone else. It helps take the focus off me and lifts my spirits knowing I can help someone when I can't help myself. I'm pretty sure the real world doesn't think like this because everyone is so busy. Maybe that's the force that drives me when I'm out there. Thankful I don't have to live that life even if illness has taken it from me. I feel so much more hyper sensitive to the negativity that goes on in the world. Maybe that comes from the loneliness I feel in this illness. The part where no one will understand. All I know is I will not allow the bitterness and anger in the outside world to eat me up. Keep pushing on to do better for others even when I won't gain a thing from it. Pushing on with the Same ol' same ol' life and doing the best I can with what I have been given. I wish the same for you.

God Bless!