I've noticed that my blog posts are far from upbeat lately. Many of those who read this blog know what it's like to be sick day after day. I don't necessarily need to report it. Of course we read blogs for many reasons: to understand someone else's perspective, to get a snapshot of someone's life experience, to find new ways to cope and deal with our struggles, and if we're ill, to learn about new research or treatment possibilities.
Obviously, I don't want this blog to be just an outlet for my suffering and frustration. Despite this, I find that having a creative outlet does help me "let go" and get things off my mind. It's cathartic, but not my sole purpose in blogging. In the beginning I thought my blog could be a chronicle of my journey towards health. This hasn't panned out yet.
Sometimes I feel like there is pressure to be inspiring by either getting better (healing or at least improving) or rising above this terrible illness in some way. In a sense, sometimes I feel pressure (mostly internal) that if I'm going to be sick and disabled I need to also be a hero. I feel I want to contradict this lately. I want to be able to say "this is really hard" and "I don't always cope well". I was lamenting to a friend recently about how everyone else seems to be able to "deal" better than I do, and she said something like - "comparing yourself to others based on things you don't know about their lives"....so true.
It took 12 or 13 days of crashed to recover from camping....I'm still very ill for this time of year (it's supposed to be my good time of year). With my first good day yesterday of course I took the dog swimming. I had to be near the water, look out at the lake, listen to the waves. So I'm in bed again today.
I've had the house to myself for the last six days which meant I had a very quiet, low-stress space. I really enjoyed it. I worked on a paper for publication that I've been avoiding for months. I would wake up and work two hours each morning, lying on the couch...then I'd putz...read, rest, surf online, rest, eat, TV.
I'm trying to come to terms with my overall decline in health this year. I think part of it is beyond my control. However, I wonder how much the long term deconditioning is playing a role? I try to walk even a quarter block on the days I'm able, but it's hard when I'm feeling fluey all the time.
I'm also thinking lots about what it means to be hopeful and how to balance that with my daily reality.
Renee recently wrote a blog post on a similar theme.
http://lymeliving.blogspot.com/2011/08/where-do-we-begin.html
Also, I was extremely moved and inspired by Sue's story on becoming visible for ME http://becomingvisible4me.org/2011/08/12/august-2011-me-story-sue/
a site that Dominque http://www.4wallsandaview.com/ started to give people a chance to share their stories about living with ME.
Gail
ReplyDeleteI am so sorry you are still in such a severe crash/relapse. I think it is important to be honest and open about your journey. To be yourself. I made that commitment to myself when I started my blog and at times it has been hard for me to be so honest about how I was feeling. It is NOT always easy to cope, especially when you must spend so much time laying flat and resting in solitude. I agree with your friend, we cannot compare ourselves to others...it is a quick trip downhill for me when I do that.
I hope you can feel my hugs from down here in the "south" (Iowa). Hang in there. It WILL get better.
I think deconditioning is a real danger. I live in an apartment up 3 flights of stairs and at one point last year I stopped trying to get myself down them thinking I was conserving energy but in hindsight it has led to massive deconditioning. It is now impossible for me to get down the stairs (had to recently get an ambulance to come and carry me down so i could go for a simple scan). If you are able to keep moving then keep motivated to do so ....
ReplyDeleteI never really gave much credence to the deconditioning mantra until I came out of my recent relapse and started exercising again. I ended up injurying both of my knees even though I took it really slow. So frustrating isn't?
ReplyDeleteI'm not giving up but am having to go to the chiro to get my knees to calm down. Think I might switch to yoga instead of walking for a while.
I never think your blog is negative even when you are in a bad place. That is just how it is upnorth. The good and the bad is part of our story and I think telling the whole story is important not just for others but for our own psyche and soul.
Sending you lost of love, hugs and hoping you start feeling better soon.
Thank you so much for sharing your thoughts and experiences. It allows others at diverse stages amd levels of illness to know that they are not alone with this nightmare of illness.
ReplyDeleteI am so sorry your time at school didn't go so well, then I was excited that you could go campting.
i have been ill for almost 3 years now, and begin to understand that just like someone lost at sea, or injured on a climbing trip, that you have to rescue yourself. It is horrifyng to realize that when we are in 2011 and health care is a human right in Canada.
Rescuing yourself means different things for each one of us. for me, it means advocacy.
For now anyways.
i hope you keepwriting.
Thanks Renee, yes, I do try to be honest. I don't want to wallow in self-pity, but I try to acknowledge the difficulties. I think my tendency to be an overacheiver carries over into the illness as well....being the perfect sick person.
ReplyDeleteLee lee, I agree about the deconditioning. I don't believe at all that M.E. can be cured by exerercise (I was in excellent shape when I got ill) but I do believe that decondition can really cause new problems and exacerbate M.E. ones. I so sorry about your lack of mobility over time...that truely sucks.
Thanks Dominique...I'm glad my blog isn't too depressing to read even if that's how I feel lately. I tried yoga a while back and found it too strenuous, but I think the video I got wasn't a good one for a sicky.
Kati, I too am disgusted by the lack of knowledge and support for those with this illness in Canada...I'm so glad that you are willing to be an advocate for us...what type of work are you doing? I would like to try camping again soon despite the long recovery period. Thanks for reading my blog.