I found this list today which was created by ME/CFS Health Watch and it occurred to me that we all should have our own personal "What Not To Do" List! The items are very different for each of us. I hope this one will help jump start us to making our very own!
Thanks for sharing!! Gets my mind thinking:)
There were some pretty good ones on there. Makes you think
It really does make you think. We spend so much time trying to accomplish things and making lists of what needs to be done and figuring how we will accomplish anything with this illness. This is just smart and kind - we have to be kind to ourselves or we are no good for anyone. I have learned that the hard way. :-)
This really makes sense and makes you think... I have tried everything under the sun... to feel bettter.... just because someone told me to and I didn't want to let them down. I have to start being selfish in some resepects - and be good to myself....
No one else knows how I feel inside..
Sneakers - that is so true. I can't count the number of times that well meaning friends have told me I must do this or that and I have finally started being firm and letting them know that only I can figure out what I am capable of and what I should and shouldn't do! I am the only one living in this body as far as I know. :-)
This is all so true, thanks Linnie for sharing this with us, we all need constant reminders!
What she forgot is to mention, or I possibly missed, is SHOES, wear well fitted, supportive, comfortable shoes!!
I liked this very much. We are all in various stages of our illness, but these are good reminders across the board. Letting go of what I "used" to be is very hard even after all these year and I've hit so many walls trying to be more, better, quicker thinking, etc. The truth is every time I've over done it trying to be normal, I wind up suffering a lot more.
I've had to slow down a whole lot and re-find who I am with a debilitating illness. It's a very deeply personal journey. It's good to have friends who do understand. :)
Rings. True for me. #1. Don't call myself names #2. Don't try a treatment just because I don't want someone,doctor, to think I'm not trying, #3. Agreeing to "work" I probably can't do so someone does not think I'm lazy. Its so difficult to get to know my new self. I don't know all my limitations and stay in denial. The consequenses are days without functioning. I'm very unhappy. I must get new realistic goals ans expectations.
You are a very courageous person. We all are. It is a quiet, silent courage that most people do not see. Being sick does not mean we're stupid, lazy or useless. The underlying depression from being in so much pain can really mess with our heads. I actually have been called these names many times by so called people claiming to love me. I'm sure we've all experienced this as well, but it's not who we are at all.
I don't explain anything to anyone anymore. I don't have the energy to speak into a closed, judgemental mind. I look for safe places and safe people to be around. I have maybe 1 friend that has a great deal of empathy even though she doesn't understand all of it, but she's willing to try.
My hope for you is that you can find peace and a sense of self in the midst of all this. :)
I try to get out one day a week, and my problem is I shop till I drop. Literally… I am actually falling down with my cane walking on my knees. My boyfriend has to hold me up. I feel it’s the only day I can get out so I have to make it count. Then I’m in bed the rest of the week recovering. It’s a vicious cycle, but I have to get out and do certain things.
I have tried the two day thing, and it just doesn’t work. I understand.
Tricky - I used to do the very same thing. I just can't any longer but that could be age exacerbating things. :-) I always dream and think that I will go out and do all kinds of stuff but after a short time I am wanting to go home.
Daisy - these are such good ideas for the list!! The ugliest thing anyone can call me is lazy - I believe we are uniquely sensitive to that idea. Another thing - just like you said - is that we are constantly getting to know our limitations because they are always morphing and changing. It is so very frustrating and explaining that to someone who is not chronically ill is almost impossible!! We all have to be kind to ourselves. Big Hugs!!!
Thank you so much Rain!! I think peace and understanding is such a gift we all need. Hugs!!!
Yep, I'm 61. By normal standards that's not considered that old but my body is registering a lot older. All the body stuff the elderly feel is creeping up on me, energy being the most important resource I have . . . and the most fragile.
I do one thing a day that absolutely needs to be done . . . and theres' a lot. I need to be prepared for when I am down and that requires I buy extra things, so I'm always thinking and writing down what I'm going to need in case of an emergency and I become home bound, which is most of the time.
I have a suitcase and toiletry case packed and ready to go if I need to stay in the hospital for any length of time. I have cans of beans and soups, frozen dinners and vegies, always 6 cases of water in my closet.
I know, I know, it's sounds like I'm preparing for Dooms Day, but it's a different kind. I've found myself two months ago without a lot of things I needed because I got arrogant about the amount of energy I thought I could use. Thank God I have good friends around me but it got me thinking really hard and acting on what my priorities really are and it's surprising how simple those are.
I am a very old 57 and I feel about 75 or more. My mother-in-law is almost 80 and she can run circles around me. You are so smart stocking up and preparing. I am so disorganized and don't prepare like I should.
SK - shoes are such an important issue. My feet give me so much trouble and my feet are wide. Shoes can make or break a trip out for sure!!
It's just so sad that young people have to deal with this too. I got this in the 80's and I was in my 30's but I know children who have FM and those poor babies have no quality of life.
Linnie, do you have friends and/or family around or are you living with someone to give you support?
I have wide feet too, so I'm a tough fit for shoes. I stick with comfy slippers and cross trainer shoes. Comfort is the name of the game now. Loose fitting clothing I can breathe in. My days of high heals and tight jeans are long gone ;)
Rain - I do have family. I live with my hubby and youngest son. I have four boys from 35 down to 18. My husband works in retail and works a lot of hours and my son works and is in his first semester of college. I also started showing symptoms in the 80's after my 3rd son was born and was diagnosed in 91 at 35. I see so many young people in their teens or early 20's diagnosed now and it so very sad!
I think I would add, "do not think of yourself as the person you were before your illness, as if you have frozen yourself into that time period." In fact, I would also add, "do not think of yourself as the person you were when you first got ill or how you were in your first year of the illness because you will not be that person as your illness progresses." I had come to acceptance about who I was last year when I could still work part-time, because although my back hurt a lot, I still could walk and enjoy the beautiful spring and summer days as I delivered meals to the elderly. I liked working, I loved the beautiful days and I thought that I really could cope with my fibro. But then I had a car accident in January that wrecked my knees and my fibro went nuts. I haven't been the same since and I am no longer the woman who could kinda sorta hold it together. So now I have to figure out all over again who I am and how am I to accept it, as well as be okay about how limited I am. Fibro is not an illness that stays the same. It changes over time and I personally believe that it's every bit as life changing as having MS or Lupus.
Thank you, LinniePies, for giving us this opportunity to think about lists of "Don'ts." I think I will also have to add, "Do not pine for the person you once were," onto my list. It's not healthy to flog yourself endlessly emotionally for something that IS NOT your own fault.
Very well stated, Rain. You said much more eloquently what I just tried to state on the following page. You have a knack for being able to sum up this illness.