I have been feeling better for the past six weeks...it is noticeable when it comes to resting, sleeping, talking on the phone, and helping out around the house and going for a drive. I am still dealing with a lot of symptoms, and find myself on the sofa for a few days at a time...but....cautiously I will make this statement: My energy envelope has increased around 15%-20% in the past 6 weeks.
What does this mean? Is it "real" energy or adrenaline? Is it due to my treatments? Is it one of those times throughout my many years of illness where for reasons unknown I feel better for awhile?
I have asked myself all these questions and in response I believe a few things have come together recently to give me these results~ the NAET treatments are working, the Lyme treatment has helped, AND Joel being home all the time has been a huge factor. I am praying this positive change is permanent, but......I also need to remember to manage the energy I have.
Lest I forget, Lyme and CFS/ME are unpredictable roommates. I was reminded of this today when I read one of Jody's articles on Ncubator. Jody has quite a story to share. She was bedridden and unable to function for a long period of time, but slowly she recovered enough to resume a full life. Unfortunately, after a period of good health, she has now been trying to recover from a crash that has lasted a month. Her words were like a splash of cold water on my face: "I am still vulnerable. I can still lose it all."
Once again I find myself in need of finding the right balance. I need to be positive about healing and yet be realistic about the need to be disciplined and careful with the precious energy I have. I confess that I have been disappointed so often on this journey to wellness that I am sometimes afraid to be too hopeful. I expect the crashes, and to fulfill the prophesy that "feeling better is dangerous". Joel reminded me today of what a negative statement that is, and he is right! What we say and what we believe has a powerful impact on our overall health.
In Popov's book, A Pace of Grace, she writes about speaking respectfully about our bodies. "One of the most powerful ways to create health is to purify the language we use about our bodies. Our words go deep. Our bodies "hear" every word we say. Our very cells respond to words of appreciation and love or to words of contempt and disappointment. "
So once again I am searching for the balance between acceptance and hope. Between reality and my dreams....between being humbled by our illnesses and being humiliated by them, as Jo commented to me recently. A statement with great impact by the way. Find the balance that works for you in the place you find yourself right now.
For me that means a lot of rest balanced with some activity ~ good food balanced with a few fun treats once in awhile ~ treatments with meds and NAET balanced with a few days off, positive thinking balanced with reality thinking, laughter with tears, isolation balanced with healthy relationships, and of course a lot of prayer!
There is hope for recovery, there is hope for healing. But let us remember that this is not a sprint...it is a marathon and the journey is as important as the destination!
Welcome!
I hope you find my writings interesting and inspirational. They are often filled with emotion because I write without many filters, and they are interwoven with my faith because I know no other way to live. May you find tidbits of information, a dash of humor, and much encouragement here. May this place be a sanctuary for your soul.
I hope you find my writings interesting and inspirational. They are often filled with emotion because I write without many filters, and they are interwoven with my faith because I know no other way to live. May you find tidbits of information, a dash of humor, and much encouragement here. May this place be a sanctuary for your soul.
Having lived with chronic illnesses for many years, I have spent a great deal of time viewing the world from my living room window. Being homebound, I have created an important sanctuary for myself. On my sofa I have fluffy pillows and a warm wool comforter affectionately named, "Woolie" that keeps me warm in the fall and winter, or during Lyme and CFS crashes. In front of me is my coffee table that holds my writing materials, remotes, cordless phone, etc. There is a photo of our family, and a photo of our oldest son and his friends in their police uniforms, to remind me to pray for their safety. The lower shelf is overflowing with stacks of books, papers, my Bible, and articles I am reading at the moment. I have easy access to my TV, stereo, and cds, and I am only a short distance from the kitchen and bathroom. My recliner is close by with my laptop "Libby" right next to it. It is a good place to be.
There is a beautiful view into our backyard, where squirrels, rabbits, robins, cardinals, finches, morning doves, goldfinches, and sparrows gather. Quite often a deer or two will cut a path through our connecting yards for us to enjoy. Trees, flowers, and bushes brighten the landscape. I have watched this view change from season to season, and never tire of its beauty. Even though at times I get tired of living life mostly from my living room, how safe and cozy I feel in my sanctuary. I am blessed.
There is a beautiful view into our backyard, where squirrels, rabbits, robins, cardinals, finches, morning doves, goldfinches, and sparrows gather. Quite often a deer or two will cut a path through our connecting yards for us to enjoy. Trees, flowers, and bushes brighten the landscape. I have watched this view change from season to season, and never tire of its beauty. Even though at times I get tired of living life mostly from my living room, how safe and cozy I feel in my sanctuary. I am blessed.
Wednesday, October 7, 2009
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17 comments:
Renee
Glad you are feeling better.
No one ever knows what the future holds, things can change in an instant for anyone.
It is just those of us with Lyme and other chronic conditions are so much more aware of how precious feeling better is and how quickly that can change.
What "treats" do you like?
I love to have a caramel apple in the fall, haven't had one in several years. Need to find where they have them around here and get just one....feel I have earned it.
Renee Such a well written and expressed post and oh so true.
I like the refrence to adrenaline surge I remember well occassions when something really exciting happened like the time I managed to talk to my MP and she listened and has been on board fighting our corner ever since. I came home and remember walking the dog and no arthritis I felt I was walking on air. Yes I crashed the next day. It was some time before I learnt the connection.
We learn so much being chronically ill far more than some doctors seem to in a lifetime of practice.
I shouldn't go on so because I am nearly 100% and maintaing that well just so long as I stay on antibiotics.
I just commented on my blog in answer to your comment to say I uploaded another link into an interesting article published in the Journal of the Association of American Physicians and Surgeons. You might find it a good read for the next time your having a sofa day.
Loved this post, Renee. It stirred up lots of thoughts but I can only write something brief today, so just wanted to say thank you for writing what you did, and that I'm so glad to hear you've been doing a bit better! Hope that continues for you. Hugs!
Hey Renee. I can so associate with trying to find that balance between being hopefull, but yet not setting ourselves up for disappointment...
I think Renee K is very right that "things can change in an instant for anyone". The greatest thing that this illness has the potential for teaching us is living in the 'NOW'. Sounds easy, but it's not ey??
I really hope you continue to improve. xx
Renee -
Sorry to have missed so much of your postings lately due to my own crashes, but looks like I came by just in time - this one is so perfect, just what I needed to be reminded of right now. You're right - that balance is so hard to achieve and it's easy to fall into despair during a particularly bad time.
I'm thrilled to hear you're experiencing some improvement - hurray!!
Sue
Hi Renee K
Thanks ~ Things can change quickly, can't they...
Since I am on a sugar free, chocolate free, caffeine free, gluten free dairy free diet !!!!!!!??? My treat is frozen Rice Dream, or maple syrup on rice flour pancakes, or maybe having jelly on toast once in a great while ( yeast issues)....
OR making myself apple pie to have with my rice dream...Still, on this free of everything diet I stay heavy! Alas, life is not always fair!
Hi Joanne~ Glad you liked the post.
I am so glad you are able to be at 100% on abx....I am at about 25% on my good days for activity. Look forward to 50% some day and beyond too!!!
Chronic illness is a tightrope walk, isn't it.
Hi Laurel
You are welcome ~ glad you liked the post...and I hope you have had a good day!
Hi Treya
You are so right, these illnesses do have the ability to teach us how to love now..in the present with joy and serenity too...
I hope I continue to improve too, but for now I am savoring the better days and fewer symptoms...
Hi Sue
I know you have been in some rough crashes and just want you to know you have been in my thoughts. Hope this one resolves quickly!
Thanks for your encouagement.
Ah, yes, balance. Such a great post! I've had to revisit this lately when I crashed for about 10 days the middle of September. Too much too fast. But I'm back on the road again and improving. Slow and steady wins the race for me. I try to love my body through all it's little healing phases and let it know I appreciate all the hard work it is doing for me.
So happy you are feeling better and praying it will last for awhile.
Hi Kara
It is so important we love our bodies...they work so hard to keep us functioning....
Glad you to hear you are on the mend.
Looks like I've come late to this thread party.
I also enjoyed your thoughtful post. My M.E occupational therapist said that we have many cycles in our illness, both long ones and short ones. For my money, though, extra support at home does make a huge difference.
It takes a long time to get ill with CFS, so it makes sense that it takes a long time to get better.
Hi Jo
I too think this illness cycles...so it is hard to distinguish between a solid increase that will stick around or a cycle of better energy...either way I hope to manage it well enough to enjoy it but not overdo...so far that has not been an option this week with our family crisis continuing on and escalating...I am thinking a cabin in Alaska is a good place to be.
Hi Jo
I too think this illness cycles...so it is hard to distinguish between a solid increase that will stick around or a cycle of better energy...either way I hope to manage it well enough to enjoy it but not overdo...so far that has not been an option this week with our family crisis continuing on and escalating...I am thinking a cabin in Alaska is a good place to be.
Ha ha, I seem to have 2 replies for the price of one!
By the way, I forgot to mention I love the colours on your latest photos.
Hey Jo
I did not notice I had a double answer..hmmmm Glad you are enjoying the fall colors...I love love love all the fall colors!
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