Life Disrupted

I must be honest and tell you all that it is taking all I have to do this post. I am unsure if it is due to one thing more than another..I just know that my head is consumed with so many thoughts right now and  I am having a hard time organizing my thoughts. However I have received so many emails about how to get through the holidays with chronic illness so here is my opinion on the topic. And don’t worry I will give you my health update before I sign off 😛

So….the holidays are always a sore subject with me because they always bring on more grief than joy.  When I look around during the Holiday season all I see is people running around with their heads cut off,  people being greedy and selfish.  I see very little compassion and love towards one another. And to be honest I was probably the same way until 5 years ago when  the ground beneath me collapsed. Now for the record I already had a shitty family who I kept at bay, so this part of my life is nothing new. But what changed was the people I chose to put on my path. The lesson I learned when I was finally diagnosed was that some people put  expiration’s dates on others.  Meaning that now I was too sick to be around. Like my life all of a sudden had no value because my body was killing itself.  Like I stood in some fucked up lottery line and walked away with the worst number combinations ever. Like I chose to be sick. Like I went to the Dr one day and received the worse news ever and as I turned around for support, all I saw was everyone’s backs as they walked out the door….OH wait…that is what happened…..all of a sudden I found myself battling my own body alone, broken and scared. Then you add all the “special, memorable” times we all love to be apart of like the Holidays and you can see how these times would be miserable.

After reading all the emails I have received this month,  I see how much I am not alone in my thoughts and experiences. If you are reading this and feeling these feelings too, you are not alone and I am so sorry that you have to go through this. I know battling a chronic illness on its own is hell and we have to  put everything we have into fighting our own bodies. We get no “breaks'” no “vacations.” Our health does NOT care whether it is our birthday, or thanksgiving or Christmas. It could care less. So why should anyone else care right?!

I absolutely love this drawing above because sometimes while I am doing my chemo, biologics, puking my guts up and internally bleeding that all I truly have is my own shadow and sometimes I can’t even find it. Chronic illness sucks and no one understands unless they are suffering too.

Many of us can’t eat for one reason or another, so just the thought of going out to a fancy meal with others seems daunting. Then there is the lack of energy, i do not know about you but sometimes it takes all I have just to get out of bed. So the idea of “hanging” out with others during the holidays just sounds exhausting. It all just seems so unfair.

With all that said I have a few ideas for those of you who were asking for some advice.

First off remind friends/family of you limitation whether it be food choices or lack of energy. I have even gone as far as bringing my own food to get together’s. I try not to make specific plans and when I am able to get out of the house I take it slow and do not go out for more than an hour or 2. I always have my cane and all my meds with me for those just in case moments.  I suggest making a “spoonie” outing bag. Also just be HONEST with others when you are at events. And who cares if people get mad because you can’t stay or eat what they have been cooking for hours….not your problem….kind of like how your health is not their problem….RIGHT?! and most importantly remember this….

For those of you who are “missing” someone this holiday whether it be due to a loss or because someone thought they were better off with out you……feel that pain, write it down, get it OUT and then take care of YOU. Your disease is with you whether you are miserable or  not…so why make it even more miserable? The dead are dead and the ones who aren’t around are not worth a second of your time.  Life is short…..try not to let others trouble your heart…………I know easier said than done……

On to my health crap….

Still doing this higher dose of chemo/biologic mix and still feeling like complete crap. Oh and the new thing I am dealing with is watching my own skin come off my face and hands. Still internally bleeding and my pain has been off the charts even with this damn permanent pain pump….I don’t get it and I am so damn TIRED

And in between wanting God to take me, I get to be like many of you and try to just PUSH through the holiday season like it doesn’t exist. I am beginning to hate this time of the year because I am reminded of just how alone and sick I am. I say this because there is no thanksgiving or Christmas dinners, and all the gifts I get during this time of year is all stuff that is for my health….Like all I want is fucking reminders of how sick I am…oh thanks for the warm socks because I have reynauds, thanks for the essential oils that may or may not help with my pain, thanks for the pillows to keep my bones from touching, etc……….I am sorry if I seem mean or ill spirited but it is like giving a woman an iron or a new dishwasher as a present or a man a lawn mower or suspenders…..

I would much rather get quality time with people than more stuff that reminds me of my shit health. Do you not understand that many of us are on borrowed time and fighting with all we have for another day, another month, another year…..maybe just maybe if you took some time out of your busy schedule, you could understand.  I wish I could explain my health more so that more of you could understand my point of view.

In my perfect world I would healthy, I would be working at my dream job, I would have the people I love the most all around me and I would let them know every moment how much they mean to me. But instead I have a body that is killing me, I can only work Part time because of my health, and most of the people I love the most are no where in sight and the ones that are around choose how and when they love me…….So forgive me, if the holidays really are not my thing. Life just isn’t as bright as it used to be, and there is not much to live for anymore when you find yourself backed into a corner getting the crap kicked out of you. You can only fight for so long….

Keep pushing through my spoonie family……find things to laugh at, find things to do, just keep going….through all my hell this month….I have still managed to make these memorable moments….