Friday, March 21, 2014

A day in my life as an Autoimmune Arthritis Patient (WAAD 2014 Blog Carnival Post1)

This year's World Autoimmune Arthritis Days theme is "A day in the life of an Autoimmune Arthritis Patient." 

(The site is now open for registration click the link above.)

So since I'm the one looking after the Blog Carnival for World Autoimmune Arthritis Day this year I created the deadline for the first of several posts leading up to the big day. You would think I would be prepared and have this post ready to go but NO! as I sit here today I'm typing this on the fly (is that still a term?)

P.S. If you want to sign up to blog for WAAD there's still time click here

I'm unable to focus my eyes this has been a problem for me the last few days, I'm contemplating wearing sunglasses in the house due to the light bothering me. My nose is red (insert random Rudolph joke here.) If you haven't figured it out by now I failed at my attempt to not catch the virus that invaded my husband's body several weeks ago. He has recovered but I'm back to the routine of being up all night coughing.

Is that part of my day in the life? Yes, yes it is! It's one of my days in the life since due to Autoimmune Arthritis my immune system is compromised and I catch everything over and over again.

When this is gone (please be soon!) Things will go back to a "normal" day in my life, okay now I'm stuck! This is where I began, random thoughts going around in my head, then I have a great idea, then boom it's gone again!

Brain fog, another part of my life everyday. I forget things a lot! I make lists and more lists then lists for my lists.

I could try to tell you about my day but everyday is different, I don't have a "normal" routine anymore. The last time I was able to work outside of the home was more than ten years ago. These days I do volunteer work at home as mentioned above and a million times before on here :)

My sleep pattern is non existent,  if I'm lucky I fall asleep about 4 or 5 am and wake up about 8am. I try to fall back to sleep but once I'm awake it's impossible, I'm still tired but can't sleep. I can't explain the fatigue I feel I'm always tired from the time I get up until the time I go to bed but yet I can't sleep. 

After that I take my morning medication, try to eat something, check my e-mail and start the day.

I think it's time to switch to pictures I'm having an extremely hard time writing this post, I'm not sure if it's due to the lack of sleep or the fact that this virus is just wiping me out things just seem more difficult right now.  

So I will try to describe my life a little more in pictures.

Volunteering during WAAD13


Walking through the falls on one of my good days summer 2013



Things that help me?








Things that make me happy :)


I read on a site to make a table close to you of some of your favorite things so if you're too sick to get out of bed you have something to cheer you up. Here are a few of mine.

The card and the small book were given to me by one of my closest friends many years ago, when I was feeling down last week I was going through a box and found them :) 



 

Pain is a part of my daily life whether due to joint or muscle pain, as I've mentioned in previous posts I will need surgery on my feet. I still have ongoing pain from my knee replacement surgery and subsequent  surgery to try and repair the damage done to the nerve.

I also deal with Migraines, Sinus headaches and cluster headaches which have multiple causes related to any and all of my Autoimmune Arthritis Diseases. I deal with ongoing pain in my mouth due to the breakdown of my teeth from Sjogren's Syndrome which was caused by dry mouth. 
*****WARNING GRAPHIC PHOTOS*****

After the nerve repair surgery


Wrist fusion Surgery



So as you can see in my life there are both good and bad things. I have learned in 26 years to find a balance somehow. Everyday I try to do accomplish one thing no matter how small. Today this is a big thing for me since I'm so tired I can barely function ! :) Now I'm going to collapse on the couch and watch some NASCAR! Only two more months before I can sit on a tailgate and watch some dirt track racing! 



Over the next few days you can check out the other entries on the WAAD Facebook page as well as the Systemically Connected site.




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2 comments:

  1. Hi Lorna - I think you did an awesome job considering you started out not knowing what to say! I loved getting this peek into your life and I think it's incredible how much you do with all the challenges.

    In particular I loved how the idea about the "favourite things". I am not a fan of clutter, but I am definitely going to enact a version of this and have a box beside my bed with things that bring me joy. Thanks for the inspiration! *hugs*

    I also love how you have the "just one thing" theme that I talked about in my post. I think that's a strong bit of wisdom our illnesses teach us and I think it's a valuable one for all of us to remember.

    Love and hugs,
    Jane

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    Replies
    1. Thanks Jane :) I couldn't have done it without your encouragement and your e-mail and message throughout the day. I honestly barely remember writing it now I was so exhausted! Yesterday we managed to spend a few hours with my grandkids, it was the oldest ones birthday and since I have been either asleep or on the couch.

      I think I have just learned to adapt after so long, I often feel like I don't do enough. I'm my own worst critic. I think we all are :) I know what you mean about "clutter" I made a table especially for those things.

      Thanks for always being their for me and helping me get through this post! Okay shhh this is public :) Hugs and love to you too.

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Thanks for stopping by! I appreciate all of your comments. I try to answer all of them. Sometimes life takes over and I can't get to it right away. Please don't be offended. I would love for you to leave your blog address or social media links so I can follow you or contact you. Thanks again for taking the time to be a part of my life, you are awesome!