I've been doing a bit better since the start of February following the 4 week crash/relapse in January. I've been getting out of the house every couple days. But I can't seem to do it without at least a one to two day crash afterwards.
Yesterday I went to a talk at the U. Today I'm in bed. I feel so sick.
I'm going to pass on the art class tonight. If I can rally enough to do a little painting here at home, I will. But I'm not putting any pressure on myself.
I'm laying in bed with the sunlight streaming in through the window. It's a sunny, crisp, cold day (-20 with a -30 windchill). I actually really love winter, but it's not the same when you can't get out to enjoy it. Still there's something about the winter sun that is so unique and beautiful and I'm enjoying it today from my bed (my bed is pushed right up against a window).
I'm coming to realize that for me, M.E. will probably be a life-long illness. While I have improved a little over 8 1/2 years, I still spend good portions of time house and even bed bound. I'm in the process of trying to assess what this means in the big scheme of things?
I've been looking at P. Fennell's book, "The Chronic Illness Workbook". I can really identify with some of the issues and topics she discusses. She breaks down the process of dealing with chronic illness into four phases. Right now, I identify most with the third phase called "The Resolution Phase".
In phase 3, the resolution phase, she talks about how you've come to accept that your condition may be permanent. Often people in this phase feel a lot of despair. She uses the metaphor of being in a tunnel and she calls the strategy of the phase, "finding meaning in the tunnel". To summarize, the phase usually involves mourning losses, asking existential questions, reinventing the self, and creatively finding a way to live a meaningful life despite the illness.
On the one hand, I don't really believe life's problems can be reduced to a step by step process. We are unique individuals living complex and messy lives. Still, it's so comforting to know that what I'm going through is common among those of us that suffer chronic illness. I also hope that I CAN find meaning in the tunnel and am open to strategies for doing this.
Has anyone else read this book? What were your thoughts?
OK, well I need some rest.........
what is the next phase - what are we aiming for? I think I am still deep in the tunnel too... I suppose we should aim not to be in a tunnel looking forwards at some bright spot we can never reach, but enjoying what we have now... I am trying!
ReplyDeleteWinter light is beautiful.
Phase 4 is integration...I think it's basically acceptence as well as having a life full of meaning despite illness. Your illness no longer overwhelms you or defines who you are as a person....sounds nice doesn't it :)
ReplyDeleteHi upnorth
ReplyDeleteFirst of all, I am so sorry this is going on with you. To spend so much time home or bed bound is very familiar to me.
I have not read this book, but have read others including Bruce Campbell's book, CFIDS and FM Self Help. This book, online email "class" and targets setting/alumni support groups have helped me in this process with chronic illness. I had come to a place of unhealthy resignation I would say...not really acceptance with hope....and then was told I had Lyme and could get well and I started the roller coaster ride all over again...hopes dashed, etc. I am some better, but am now in the tunnel, working more with acceptance and hope...NOT resignation.
I think finding support is so helpful, whether through blogging friends, in person support groups or the online email groups that have become my lifeline.
I have shared before, a poster I have on my wall...showing women from all over the world. The words say, "Many Strong and Beautiful Women".
You have so much courage, upnorth on this journey you did not desire to take. We all do.
What you write here helps us all.
You are in my thoughts and prayers today.
Renee, I agree. It's not about resignation, but acceptence. Part of phase 2 in this book is "cure chasing" (which is different than chosing a treatment plan) and which I did a lot of for a while.... I think this is the opposite end of the spectrum from resignation and can lead to false hopes and a lot of money and energy spent -both are probably not healthy.
ReplyDeleteFor me right now, though, I think it's about accepting I'm sick (have been for a long time and may be for the rest of my life) and how to make a fulfilling meaningful life despite this.
I hope it does not sound like I thought you were "resigned" to your illness...I was just speaking of myself :).
ReplyDeleteMaking life meaningful inspite of our circumstances..it is a good thing!
I got so much from this post, thanks. And I'm so sorry you are going through a bad patch. My own thoughts are that we can be involved in several processes at once and be in several places of acceptance, resignation, grieving etc etc at the same time. It takes courage to survive with this illness and it seems to me you have that in spades! Take care.
ReplyDeleteNo, I didn't think that Renee...although I can be sensitive sometimes when people (who don't know much about the illness) tell me I've given up just because I'm trying to come to a place of acceptence (and am not interested in chasing their oddball cures)....which like Jo says just above, I think it's a matter of sometimes being in several places at once - acceptance, grieving, depression etc. Although maybe I am feeling a little resigned lately? I know I've been depressed about this stupid illness which has me so boxed in lately.
ReplyDeleteI haven't read this book. It sounds interesting. If only there was more support out there for these illnesses and people out there to guide us on these issues on a regular basis would only help I would imagine?
ReplyDeleteI'm sorry you are feeling resigned at this point. It sounds like you are already aware of the phases in a way already... Doesn't always help though.
Take your time and don't beat yourself up about it. Allowing the realization that you may not get better is a HUGE thing to get ones head around.
Rest well xx : )
Thanks Treya, you're right...it is a really big thing to accept.
ReplyDeleteupnorth -
ReplyDeleteI wasn't sure if I had emailed your or not, but I did respond to your comment on my blog.
Whenever you feel up to it, please feel free to email me your story. I would love to use it.
My email is: bygracenotmerit@gmail.com
Also, can you just email me and let me know that you are still wanting to do it.?
Thank you so much.