Thursday, December 28, 2017

Christmas Photo Catch up and "Here you Come Again; " An Ode to Lyme Disease and Chronic Illness. The 'Wasted Days'.

You may have clicked on the label and are looking for this specific post on Lyme. I included a few more posts where I reference it but this is the one I actually talk thoroughly about Lyme Disease:

http://worldwecreate.blogspot.ca/2016/08/lets-talk-about-lyme-because-usually-i.html


*I apologize to my regular readers who are NOT chronic illness sufferers for the many posts I have written this year on my condition. I know it is a lot. But I think this is how I am coming to terms with the new me...writing about it. I also feel that Mono last February weakened my immunity and set my chronic improvements back further than I anticipated. Thus, I have been focusing on this aspect in my writing to come to a point of acceptance. I do feel I have other topics and posts within me, in this new year, but for now, I need to get this out there. I have had at least two attacks a month lately. Which is more than my average of four a year with other more manageable symptoms in between. It's hard on the soul, so the soul needs to speak. Thank you for your patience. This post is also sprinkled with photos of the beautiful moments I have had lately because there have also been MANY. It also shows the contrasts of what is seen, and what is felt. In some of these photos I was at 40% . The dressed up ones with my daughter I was at a lovely 80% of what is generally my 'good normal' (which is what I call fantastic!) and when I was at my lowest I didn't take pictures because I was huddled in bed unmoving...but you get the idea that it is a roller coaster and a hidden illness...which means- I can look pretty average most of the time. *

"Here you come again
Just when I've begun to get myself together..."

A chronic condition is one that lasts or is persistent in it's effects. Yet, for many sufferers of Chronic illness, life can be a roller coaster of moments that are "almost normal" fooling the patient into believing they are improving, only to worsen quickly in a short span of time. It often feels to me like my condition takes over just when I think I've made it through a long time period without major effects.

"You waltz right in the door
Just like you've done before...
And wrap my heart 'round your little finger" (or my body...)

Sometimes it feels like Lyme disease (or Anemia or Endometriosis or Fibromyalgia or Thyroid or ect. ect. Insert any co- condition or primary chronic illness here) are an entity onto themselves. It sometimes feels like the disease is a person who enters my bodily home and decides to take over.

"Here you come again
Just when I'm about to make it work without you.."


Each time I learn new coping mechanisms or healthier habits to 'manage' for awhile and fool myself into believing that 'this time I mostly beat it!'... symptoms manifest and wrap my body around their powerful influences.

"You look into my eyes and lie those pretty lies
And pretty soon I'm wond'rin how I came to doubt you."

No matter how many times I have been down this road I am fooled into believing the lies of health. I believe them when I have gone two weeks without major pain. I think that I must have improved if I managed two full months of the treadmill even WITH pain! Or when I change my diet, switch all my products to organic or natural, de stress, do yoga, practice meditation...the list goes on. But worst of all, I forget the lessons and I have to learn them all over again. The precious lessons that only Chronic illness sufferers learn first hand. The lessons that teach that you can try your best and then let go of the rest. That compassion and easy going acceptance go hand in hand with getting knocked on your butt over and over again. 

"All you gotta do is smile that smile
And there go all my defenses
Just leave it up to you and in a little while
You're messin' up my mind and fillin' up my senses..."

Each time I doubt that my illness will make a comeback, I am proven wrong. There go all my defences that I painstakingly put up, in one foul swoop. In a little while my mind is messed, my senses are backwards and overloaded, and I am in bed wishing for time to pass by. Because time passing by is the only hope for pain removal. Nothing else works. Time passing by is the only way I will not feel the craziness that is the prison of Chronic illness. And then when the worst passes, I fight the fear of dread for the next 'attack.' I remind myself that this beautiful life is what I have. To not focus on the "Wasted days."


(Pictured above: When I tried to quietly read a Christmas Romance novel...this happened. Oh well, they are fantastic distractions I suppose:) 

"Here you come again lookin' better than a body has a right to

And shakin' me up so that all I really know
Is here you come again, and here I go, here I go
And here I go..."

I call my attack days Wasted Days. Because I can never get that time back that I wish away. They shake me up so and all I really know is that they take over and my persona seems to go. But there is no way, while I am in those periods of pain and suffering, that I can do anything else. I can not move or talk or watch or read or text. If someone else moves or raises their voice I feel the rising panic of pain. My family knows what to do. My husband realizes when I am feeling what normal people call "sick" I am a tough cookie...and that is when I will start talking slowly because it is a vast improvement from what otherwise feels like dying.

"And here I go
Here you come again and here I go
Here I go."  (Songwriters: Barry Mann / Cynthia Weil/ Sung by Dolly Parton.)

Here you come again...breaking my self into a million pieces. And it takes weeks after a one day episode to collect the shattered remains. One day of pain equals two weeks of lingering symptoms, paranoia of come backs, and feelings of emotional failure.

My friend also has Lyme disease and two co conditions that I do; Endometriosis and Fibromyalgia. She was in the hospital Christmas Eve. I had my attack Boxing Day. We commiserated together and compared symptoms that were eerily similar. Every time I used to go to the hospital for my attacks I was hooked up to an IV with a high heart rate. They were always concerned about my Pancreas and Gull Bladder but each time those were tested, the tests were fine...so after infusions of pain killers (I have had them ALL) that did not work or only worsened how I felt, and multiple bags of re hydration I would be released. I decided that my loathing of hospitals outweighed my need for aid, after this happened multiple times. My fellow Lymie also had the exact procedures done and had the same places checked...because that is where the pain is the worst...Pancreas and Gull bladder. Now I usually stay at home unless I think I am severely dehydrated. I can not manage to drink during an attack because it only makes everything worse.  



(Pictured above- my favourite Christmas gifts made by my kids.)

We spoke about the fact that in this condition of ours, if anything good comes out of it's misery, it's our ability to adapt. Not that adaptation or change is easy for anyone...but for us, we tend to bounce back quicker from major life setbacks or emotional traumas, or pain in general...because that is our life. That is our lesson. We also have learned more compassion for ourselves and those we love around us...flexibility. Belief in the good despite the bad. Savouring of the sweet, ordinary moments that many take for granted. When we feel only 40% ok, we take that as a good day and run with it! We see life through a different lens. We are both known for honouring our time, our bodies and not doing anything we don't want to do. Yet, at the same time, being giving to those in our path to give, being thankful and generally feeling the everlasting wells of joy through it all. Which baffles people who only think this can happen with some sort of belief system or God...but it can, and it does. Life is very fragile but also incredibly strong. It is about the paradoxes. Chronic illness brings the paradoxes in spades.

But for the tougher moments, when it seems the illness has taken over and we are just a witness to the passenger that hijacked our own vessels, we simply pass time and remind ourselves to value it later. Here it comes again and here we go...but we WILL be back until one day when we are not. Until then, we focus on the sensory magic...because the pain is accompanied by sensory hell. Thus, the little moments of comfort to us are heaven. Blankets, snuggles from loved ones, kind words, music, hot drinks, nurturing foods, hygge home, wonderful friends, and all that is good become our mantra of self care. The pictures in this post are what I am focusing on right now...and the peppy Dolly song I choose to give some humour to my otherwise bleak condition. Because music changes the mind and opens the soul. This Christmas brought both beauty and pain. But the beauty is what I hope to continuing celebrating. 




(Pictured above: Craft Time!)

"Just leave it up to you and in a little while

You're messin' up my mind and fillin' up my senses..."

Here is to being messed up in the most beautiful ways and filling up the senses with delights instead of horror or pain. To finding innocence in craft time or Christmas Pjs, or making lame, cheesy christmas song videos with the daughter, or enjoying a mug of hot cocoa made by hubby or snuggles with my boys, or watching the window catchers twinkle while Christmas tunes are spinning on the record player...



Song Choice: Here you Come Again- Dolly Parton https://www.youtube.com/watch?v=bflkeWVTNk0

4 comments:

Ashe Skyler said...

In that first one, you look like a bride and she looks like an elf. Nature has been kind to the fellas too. :)

Waiting for time to pass is definitely one of the worse parts of ongoing nuisances. Not only is the stuff putting you in a catatonic state unpleasant, as well as only being cured by waiting the bloody thing out, but it's incredibly boring. The vile buggers often don't let me sleep my way out of them either. Then there is the physical pain and stiffness that comes from not being able to freely move and the weakness from not being able to eat or drink. You have to recover from the recovery! I do not enjoy the wasted days at all. I dread them when they come. Bah. I'm a bad student too, 'cause all I've managed to learn is to what extent I dislike various surfaces after being trapped on them for different lengths of time.

Kmarie A. said...

She does look like an elf! She has always had that other worldy ( and short stature) with slightly pointed ears and perfect skin even during puberty thus far. She is stunning. :) Thank you. I think they are all very handsome.

Yes, recover from the recovery! Lol, yea it is very tough to be trapped!
Hopefully you can stay away from these instances and be your wonderful go getter self:)

S said...

You have spoken my heart not only to my heart :) Chronic illness is something I did not know that I had until very recently. I thought I had some episodes of ill health that will go away eventually with good diet, exercise and medicine. All my friends/relatives also think that way even now. But I have been observing myself a lot and can see a pattern in my illness and now I can join all the dots and gaps which explain a lot of my confusions regarding health. Auto immune conditions are like that. Sometimes you are in inexplicable pain followed by a phase of remission and so on and so forth...I think that my anger comes from the fact that I did not create my condition yet I have to pay for it , explain it to others and cannot lead the so called "normal" life. For a long time I could not let go off this anger but I have started accepting it now. Also I am learning to enjoy life and let my hair down with the limitations or restrictions in my own way. I have learned to create something from nothing after the pain passes by. I have learned the value of time and the value of small little moments and stopped wishing for grand things or great things. I am still in my learning stage and still trying to figure out things. Yet, I know in my heart that there are some things I will never be able to figure out and its ok , and although I am curious, I have to let go of my curiosity sometimes and instead just go with the flow whenever possible. Anything beautiful attracts me and gives me immense happiness, be it a piece of art, writing (including your blog), movies/t.v shows, plant/nature, picture, place, home, people...and with my illness, I have been able to see this beauty more maybe because all the lows are followed by highs, or maybe because I feel I should utilize my pain free time in searching for beauty everywhere until pain strikes. Chronic illness is not only an illness but also a complex process that shapes the psyche of a person and transforms the person into something complex...we acquire depth, beauty, compassion, understanding, tolerance, humanity, creativity, etc.etc. along the way of our pain...so it is not only pain but a whole lot of something else...a different world altogether which cannot be perceived by ordinary senses.

Kmarie A. said...

Yes u hit the donkey on the head! When u said that you did not create your condition but have to live with the pain of it. I still go through anger moments. In fact I'm having one today… But I usually come around to acceptance and beauty to because what else can we do? I still go through anger moments. In fact I'm having one today… But I usually come around to acceptance and beauty to because what else can we do? Yeah the Lows are often followed by highs, which I guess is a good thing. Appreciating true beauty is a good point too It is a complex process that shapes many aspects of a person. I love that you mention depth, compassion, understanding towards humanity creativity etc. yeah I guess it gives us an advantage in that area? But I am sorry you go through it too because sometimes it's just hard. But on the plus side many of the people who are chronic illness at first or some of my favourite people. And you are one of those! ♥️