Well it's here - my 10 year anniversary of getting ill....of my life completely changing, of never having a day where the heaviness of illness isn't somehow affecting me. I was telling my friend N., that I no longer remember what "well feels like". Intellectually I know I was well for 30 years. But my body memory is gone...it's been that long.
It was 2002 and I was headed to the airport to pick up a group of students for a sea kayak course (I worked year round for a wilderness school). I was the course director (a glorified logistician) for a couple courses.
That morning I woke up and just didn't feel well. I felt like there was an internal tremor or buzz running through me. After driving the van to the airport, I remember standing in the airport organizing students and feeling very dizzy, off kilter. I dropped the students off later that day to their instructors and lay on the floor of an elementary school classroom (one of our field outposts). I had a chest ache, fever, and a dry hoarse throat....at this point I truly felt as if something was really wrong.
Ten years ago today that was. I got sick on the Sunday, and on Tuesday I went to the local clinic. Later that day the NP who I'd seen called to say my mono spot test was positive, I had mono. She said that I should expect to be out of work for four to six weeks.
Well it's been ten years now...so much for four-six weeks eh?
Those who read this blog know the story...many of you having had similar experiences....Dr. to Dr.....still very sick, test after test etc.
I feel as if I want to say something important or insightful today, however, I can't think of anything.
I'm very sorry I got sick 10 years ago. You will never get me to say I'm happy or grateful it happened. I lost almost all my 30's to illness. I've been unable to work, pursue my passions and hobbies, socialize....the list goes on.
It's looking like my 40's may be even worse (I've been going down hill the last two years). I feel sick everyday, the malaise and weakness equivalent to a really bad cold or influenza, or often much worse....and there is still is no blood test, no treatment, little recognition from the medical community at all that this is a serious illness....it's coming, but I suspect it will be years....
I've had a rough week (again), and there are days lately where I've had enough. I go to bed at night and don't want to wake up. (Don't worry, I'm not saying I'd take my life, I won't).
That being said, being sick for 10 years has come with some gifts or insights:
- Increased compassion for others
- an understanding of what true strength is (I see it all the time in my fellow ill sufferers)
- an improved relationship with some friends and family (despite drifting from the vast majority)
- a chance to learn to be alone and be ok with it - really enjoy solitude (although every thing has it's limits)
- a chance to observe little things that people with busy lives miss as I lay and look out my window
- developing my artistic side on my better days
- spending time with my dog
- doing lots of reading I'd never otherwise have done (not that I didn't read before, but I was a very busy person and my joys were more on the active side - canoeing, climbing, dog sledding, running)
What do you do on the anniversary of the most upheaving event of your life? Eat cake? Try to forget altogether? Get drunk? Scream? What do you do if you had a sudden onset illness?
Glad you posted this, Upnorth - it feels important to mark such a significant transition. As mine was more of a 'slow onset' kind it's hard to pinpoint an exact day. But I have a rough idea of when the most significant shift happened - and yes, I count the years. A mark of respect (to oneself), apart from everything else.
ReplyDeleteYes, the courage we chronically ill experience in each other is really something.
Sharing parts of your story today IS important, upnorth. We honor you for having the courage to keep going even when there are times you "don't want to wake up" in the morning. I am so sorry you are struggling so much and for so long. There are no words to make it better, but I am ao glad we "met" via cyber world. I feel blessed to call you friend....even from afar.
ReplyDeleteI understand. I haven't been ill all that long, but it just feels like a never ending nightmare.
ReplyDeleteI am glad you are able to find some positive despite all the ugliness, the neglect, the stigma, the discrimination in health care.
Take good care. I know it's not easy.
Kati
From Leah,
ReplyDeleteI know the feeling, enough already !! My onset was more gradual, but it never let up. Sometimes I wish I could scream but my voice is part of the whole picture and maybe it wouldn't come back. But I've been known to eat cake and drink a few sodas !! Sometimes I can get into a day dreamy mood and weave wonderful stories, rewriting my life. But basically I'm full of regrets of all I didn't get to do and looks like I won't ever do. I used to push more, but have stopped that as I don't recover anymore so everything is now measured. It's all rotten. I really see no gifts in this illness. Thankyou for the above blog and giving me words to describe what I feel ("body memory" such a good concept). No mater what, our lives deserve to be documented and recognized, validated. Well, can't think of much else to say. All of you are in my thoughts. Thanks for the words UpNorth, I liked "heaviness of illness" too. OH, I now go to sleep and when I wake up I put on the radio, SiriusXM, helps to get my mind off of myself a little. Give your dog a pat from Leah.
thanks upnorth for sharing your deep thoughts. it is true that we could do or think something that we may not do or think if we don't got this sickness, but still, no one deserve to be ill like this.
ReplyDeletei am like some other ME (i am not sure it is a right name for my illness) patients, there was no clear line of the starting point. the root of my illness can be tracked back to my teenage years. however, my problems got serious and started to bother my daily life since my early 30s, that over 15 years ago, and the recent 5 years is the worst. but anyway, i still hold the theory of body's self recovery as my "faith": if i get whatever my body needs, i will recover.
take care! hope you feel better soon!
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ReplyDeleteI'm like you in that I also had acute onset. April 1st. What an April Fool's joke that was, but it never went away. Every year, I tick it by. It's only been 4 years for me and it's hard not to look to the future and get overwhelmed by the thought of how many more years it will be. This is all just horrible and unrelenting and you are so brave, especially in finding the positive side of it. It does give one a gem of a view on the world, but at what cost? Anyway, big hugs!! It WILL get better, maybe not tomorrow or the week after, but one day, I strongly believe that.
ReplyDeleteThanks all for your lovely, supportive comments. It's so nice to know that I am not alone and that there are others also facing these challenges and hurdles when it comes to chronic shitty illness.
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