I haven't been on here in a while in the hopes that if I ignore all my health issues they will magically disappear and my life will return to the way it use to be way back when I was healthy. Truthfully I would take even half way healthy at this point but the mind over matter thing isn't curing me that's for sure. I just read something that said:
I'm always scared to say how I really feel. No one wants to hear "It's getting worse." Everyone wants to hear "It's finally better." But, what if it isn't? What if I'm lying?
This hit me hard as I try to act like my life is just fine and all is well, not because it is, but because I know no one gets it. I'm sick not stupid. I know what people think and it just makes it so much easier to not tell anyone how it really is because all they want to do is fix you or quite honestly not hear about it. I get it I really do, its okay, as I continually live in my own hell, alone. It's funny how people think things are fine when they are removed from a situation. I know most people look at me and think there is no way she is sick. I wish that were the truth especially last night when I was up half the night in excruciating pain in my knees and elbows. Pain so bad that sleep was very disrupted. When this happens I try to go back to sleep and toss and turn in hopes of relief which many times never comes. The pain no one sees so when you can't see someone's suffering it isn't there. For me it is quite a different view. Nights like that make the daytime almost unbearable.
Yesterday had to go to the grocery store I didn't want to but I forced myself to go. It was fine I made it through got back home and carried the groceries into the house. I put them all on the island and knew I needed to rest before I could put them away so I sat at the table and jotted down a few personal thoughts on how hard it is to grocery shop. Something so simple to the real world. I'm pretty sure a healthy person reading this thinks it sounds crazy but like with everything until it happens to you there is no way you can understand it. I tried to use the mind over matter thing and tell myself to just get up and put them away but I physically couldn't do it. Weak and exhausted I sat there and thought to myself this too shall pass. It did. I put the stuff away and carried on, onto the couch for a while but at least I carried on. I spent some time on Pinterest looking at ideas for decorating. Looking at the things that give me hope in this hell. I thought of all our kids and their families as I do so many times throughout the day and the joy in my heart out weighed the heartache of the illness that controls my life, the illness no one sees or understands.
Here are a few of the things I jotted down yesterday. It sounds so very ridiculous but writing stupid stuff like this down helps me process what I am going through since I am my own therapist in all of this. You know you are chronically ill when:
-Your favorite part of the day is bedtime.
-When taking a bath makes you moan like a French whore.
-You are unable to sleep because the pain controls everything.
-You wake up in the morning more tired then you were when you went to bed.
-You dream of a world that understood.
-You have to cancel plans or not make plans because you need your energy to just exist.
-You feel alone, more alone than anyone could ever understand.
-Your best friends are your dogs because you spend your days with them instead of people.
-You can't hold down a job because you never know what each day will bring. (Thankfully I am able to be home and have a very understanding husband.)
-Your favorite place to come to is your blog because in some strange way it understands.
I could go on and on but I won't.
I feel like I am at a place with my blog where I don't know what to write about anymore. I have covered every topic that affects me personally, so why write more? Is it a time to end this and just let it be what it is? I'm not sure. My writing skills have faded along with my illness. the years fly by and each year you wonder if this is the year you will feel better...or die. I am off all medications for my arthritis and I wonder if that is my whole problem. The thought of going back on any of them is a heart wrenching thought. I must say I was doing better on them but at what cost? Side effects that were unbearable. There is such a give and take with being chronically ill. The decisions you must make in order to live somewhat of a normal life are hard to make. I wish I had that crystal ball to look into and the answer would pop up all sparkly and shiny like a brand new penny. Here you go Dianne here is your answer, do this or do that and waa laa everything will be better. We all know life doesn't work like that, it never has and it never will. So we push on. We have faith. We have hope even when the hope is just a little glimmer of light. I always think to myself as long as that glimmer of light is shining through we will make it and on the days that the light is brighter than most we push ourselves to do more, to be better, and to fight to the end. Like I always say what more can we do?