A change is gonna come
For the past year and a half my husband has been ill. After too many appointments to count, a million tests (so many I am not even sure how he has any blood left really), a lymph node biopsy, and the elimination of every illness possible he was finally diagnosed a few months ago with Chronic Fatigue Syndrome.
For those interested in knowing more this video is helpful.
Or you can read more about it here: CDC: Chronic Fatigue Syndrome
It has been overwhelmingly frustrating and stressful trying to figure out what was wrong with him. It is not easy watching someone you love struggle and be sick. While we were very relieved to find out it was not cancer (and then told repeatedly that "at least it is not cancer", yep thanks for that), unfortunately not much is known about this illness which is also very frustrating. Why and how you get it- no real idea, therapies to help with recovery are few, and the prognosis is not so great. It is kind of difficult to explain that he might not get better, but then maybe he will given enough time. Here is this ambiguous gray zone answer of I don't know, no one seems to really know. All I know is he feels like crap every day and if he has a fairly good day and over does it he is back to a high level of feeling like crap for a few days. Awesome. Come on science....get on it.
The hardest part for me is that, much like many other chronic illnesses, the hubs doesn't look overwhelmingly ill, which can trick my brain into making some stupid comments on my part. To anyone suffering from a chronic illness I apologize on behalf of humanity for the stupid things we humans say.
What that means for us is 2016 is this is the year of change. Learning to deal with this illness, jobs, where we live, how we live, are all going to change. It is easy for me to get overwhelmed. Sometimes change and I don't get along. It stresses me out. But I am going to do my best to view this as an opportunity. An opportunity to embrace the unknown and look forward to what adventures will come our way in 2016.
I am grateful for the many friends and family who have supported us. They have made this difficult time less difficult.
My main goal of 2016 is to worry/ stress less over things I can not control. I found this article very helpful: The Most Surprising Regret of the Very Old.
For those interested in knowing more this video is helpful.
It has been overwhelmingly frustrating and stressful trying to figure out what was wrong with him. It is not easy watching someone you love struggle and be sick. While we were very relieved to find out it was not cancer (and then told repeatedly that "at least it is not cancer", yep thanks for that), unfortunately not much is known about this illness which is also very frustrating. Why and how you get it- no real idea, therapies to help with recovery are few, and the prognosis is not so great. It is kind of difficult to explain that he might not get better, but then maybe he will given enough time. Here is this ambiguous gray zone answer of I don't know, no one seems to really know. All I know is he feels like crap every day and if he has a fairly good day and over does it he is back to a high level of feeling like crap for a few days. Awesome. Come on science....get on it.
The hardest part for me is that, much like many other chronic illnesses, the hubs doesn't look overwhelmingly ill, which can trick my brain into making some stupid comments on my part. To anyone suffering from a chronic illness I apologize on behalf of humanity for the stupid things we humans say.
What that means for us is 2016 is this is the year of change. Learning to deal with this illness, jobs, where we live, how we live, are all going to change. It is easy for me to get overwhelmed. Sometimes change and I don't get along. It stresses me out. But I am going to do my best to view this as an opportunity. An opportunity to embrace the unknown and look forward to what adventures will come our way in 2016.
I am grateful for the many friends and family who have supported us. They have made this difficult time less difficult.
My main goal of 2016 is to worry/ stress less over things I can not control. I found this article very helpful: The Most Surprising Regret of the Very Old.
Wishing you all a less stressful 2016 full of fun and adventures!
I've wanted to comment since you posted this but haven't had the chance to sit and compose a proper comment. First of all, I'm so sorry you and D have had such a tough time. I have a million questions, I wish we were snuggled on a sofa with wine for a proper chat. But in the absence of the sofa/wine, all I can do is send my love to you both!!
ReplyDeleteThank you for your kind words. A proper chat with you would be lovely!!!
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