Another hard week under my belt. I had some definite ups and downs...the ups were two trips to beautiful outdoor places. One evening my roommate and I took the dog for a swim in Lake Superior. It was around sunset and gorgeous. I went in the water - it was FREEZING! but refreshing.
Yesterday we went for an evening picnic and short paddle. Arms were weak, but I managed to lily dip and steer and we were paddling down a beautiful little channel at twilight where the trees and sky were perfectly reflected in the water like a mirror (pictures to follow someday).
Seems like a lot right? It really is a lot and more than I should be attempting. Otherwise I was in bed almost all day everyday, getting up for lunch and dinner and maybe a little time on the couch in the p.m. I've been running an afternoon and evening fever now for two weeks.
I was talking to my Mom this week (who's been suffering terrible chronic pain due to osteoporosis and a degenerated disc). Her situation is very different and yet similar in that it's chronic. Chronic pain...I can't imagine. My problem feels like chronic flu or chronic viral immune activation....I said to her "I just don't know how to take this anymore day after day, year after year. How many more years am I going to have to live like this? How can I possibly manage?"
Her reply was "you just need to be tough". While this may sound a little insensitive, I know that's not what she meant and it made me think. She's right.
It's the mental and emotional part that lately has been hard. Just waking up each day and having to do it all over again. Somehow make it through feeling so terribly sick and weak and beyond tired....and having no way around it. But my mom is right....after nine years we can be pretty sure that it's not going away (it might, but there sure aren't any signs of it).
So I really have two choices. I either get through each day of suffering moaning and groaning (internally) or I try my best to hang tough. I really am on my own with this (meaning there doesn't seem to be anyone out there that can make it go away). I need to be tough.
Which made me think I need to start thinking more about "getting through" and "working through" each day rather than trying to find ways to escape and work around it. Basically, I'm trying to change my mind set.
I've been a little kamikaze lately - pushing really hard sometimes in order to do something fun. Then afterwards I pay the consequences in that I'm so terribly crashed and viral for days afterwards. Being even sicker afterwards means I get even more frustrated and depressed. It's a vicious cycle.
I need to find a way to balance it out a bit. Part of it is I'm sick of relying on others for everything....driving me places, getting stuff for me, taking me on outings. I want to take care of myself so then I go do things and end up crashed worse. Does anyone have any ideas?
A while back, someone gave me advice that really helped me a lot and it is advice that I still take today.
ReplyDeleteThey told me to have one day or night that I can stay up later, or do something I would not normally do throughout the week. On that day, I can do whatever I want.
Then, the rest of the week I spend time resting up and following a strict schedule.
I now can do this twice a week. Three times is pushing for me most of the time. But it helps me because I know if I want to I can do it if I have paced and rested all week.
Of course, I am in a better position than you are at the moment, but I still think it was one of the best pieces of advice I have ever received. It helps me balance the bad with some good when things are reall challenging.
Another suggestion I would have is to read the Hummingbird Foundation for ME's website. The had a great article on how to come out of a severe crash. I used that to help me get back on my feet. It was hard but eventually I got back up.
One other thing. I really think the shake I now drink everyday has had an amazing impact on my body. It's called Amazing Grass and it contains everything the body needs for the day. Its raw and organic and in two weeks I noticed improvement in my body. It wasn't huge. It was that I could tell my body was funtioning better.
Also, I added a thyroid herb as that is a huge problem in ME. THAT has made a difference as well.
Hang in there. It will get better and you will find balance.
Sending you hugs and love...
You have been through a long relapse and I am so sorry that it continues for you. Because I am on Lyme treatment besides having CFS/ME, what I need do is different but in many ways I expect it would be the same..first and foremost finding what helps YOU. It is different for everyone unfortunately....some things help everyone across the board, others do not. I would keep a journal as you seek out what can help you with energy, with your thoughts and emotions, with gaining strength, etc.
ReplyDeleteI have been reading Wayne Muellers book, How Then Shall I Live? and it speaks volumes to me about finding peace within our circumstances and putting our attention on those things we love and that bring us joy, not on our poor health or other worries...easier said than done, but not impossible. Of course pacing and not pushing and resting and sleeping and taking only baby steps when we begin to feel better...etc. etc. All that you have heard before and incorporated into your life.
The biggest change for me has been connecting with a medically trained homeopathic doctor and the remedy I am taking. It has brought more healing to me right now than anything else I have taken or done. I am also learning to protect myself from the barbs of others, love and forgive myself, and deliberatly seek out joy for moments of my day...whether it is to laugh, just breath in nature from my porch, or hold my hubby's hand speaking words of love...AND I try to reach out to others...giving support encouragement and love away always brings it back to us.
I will say with complete truth about how I feel...we are all tough, strong even when we are weak, and beautiful in how we live with these disabling, destructive diseases.
i hate giving advice to others as what works for one may not be workng for another one. Here is what's working for me.
ReplyDeletei have been ill for 3years now. Mostly housebound and mostly horizontal.The grieving process never ends. However I need to find joy somewhere, withing my physical and even mental limitations (I believe that mental and emotional strains are perceived just about the same compared to physical strains) I have turned to creativity. Craft. Learning something new and getting absorbed into it has been a great healer in my life. Instead of researching our disease, participating in forum boards, and getting angry with the CDC, I have learnt to push it aside a bit and make room for this new hobby. i may not be able to do it for a long time but i can put it aside and get back to it when i'm better.
I hope you can find your own path, whaterver it may be.
Dominique, I love that advice of one day a week. I guess my activity would still have to be within reason though right? But as you know, I get so squirrelly and this might be a way to tackle that, and helping me to pace better the rest of the time.
ReplyDeleteRenee, your success with homeopathy is making me think I might try to find an alternative practitioner again. And thanks for your support, you don't know how much it means just to have people who "get it" around...even if there are differences.
Anonymous, I like the idea of crafting...and you're right...putting the energy towards something positive is key. For example, while I research some, there are certain articles I just don't let myself read because I know that they will just upset me and serve no use. So sorry you're mostly horizontal...I hope that doesn't last.
ReplyDeleteI agree about the grieving thing, for some reason I didn't think that A: I would still be sick 9 years in and that B: if I was that it would be this hard (mentally, emotionally)