Thinking about you
AnonymousMarch 19, 2009 at 2:33 pm
I have not been on in a while and thought I would check in. As usual things continue to ebb and flow. The last time I wrote I expressed a lot of frustration with being tired and having no energy. I was helped so much by many of you who shared your input regarding this. Since then I have had a major breakthrough in attitude. I made a concerted effort to give up feeling guilty. Especially about not working and for not living the way I thought people expected me to live and consequently I am more productive than ever. Well, not as much this past week as I was hit with the flu, bronchitis, and thrush which has really put the CIDP into full throttle. But prior to this past week I put the guilt about not working to a test and learned that I in fact cannot maintain doing steady work, even from home. I also saw my Neurologist who once again reinforced that my job is to build a life of quality and to do the things that I am physically able to do and that make me fulfilled.
So the lesson for me has been to be patient with this process of acceptance and to let go of the past. Let go of guilt. Do what I love. Allow my body to be as well or as sick as it is that given day. And one of the biggest things I have learned is that I know my body better than anybody. I don’t have to get confirmation from doctors or others with CIDP that the various symptoms that occur for me are indeed real and deserve the respect of what ever attention is required to address them. I don’t know if this is making any sense but suffice it to say I am much more mentally adjusted to this disease which is half the battle, I think. I guess what I am saying is that I accept that I have limits. That some days I have to wear braces on my legs to walk, that some days my arms are too weak to do much, that at the age of 42 I am retired, and that I never know how I am going to feel or be able to function. I am living as well as I can and that’s all I owe anybody.
Lastly, I just want to share an aside. This morning my Neurologist called. He kind of scared me because I had just seen him last week and everything looked good. So hearing his voice made me nervous. He called to ask if I would be willing to speak to some of his residents that he teaches about the affects of CIDP and Diabetes on a persons life. He said because my two conditions are as complicated and unique as they are that my case would be a helpful teaching tool. That is kind of cool to be able to have all this struggle be a potential help to others. I feel honored. So that’s my latest and I am grateful to you for listening. I think of so many of you so often and hope all are doing as well as possible.
AnonymousMarch 19, 2009 at 2:53 pm
Linda, I agree, our mental attitude is half the battle. Accepting who we are and what our bodies can do leads us down a better path. Many of us have been told our issues are in our head and that doesn’t do anybody any good when we know there are physical symptoms.
You will be great when speaking to your neurologist’s group. It is so important that the medical profession really listen to patients. By doing this you will be helping us all.
That was a great post! Be sure to share those thoughts with the professionals.
You go, girl!
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