Many of you have shown me lots of love and concern over my health. After lots of testing and diagnostics, the doctors have ruled out most of the recognizable and understandable diseases like multiple sclerosis, thyroid disease, lupus, and sleep apnea. What I'm left with, unfortunately, is chronic fatigue syndrome.
I have been very frustrated with this disease, especially with the fact that it is difficult to explain and it just won't go away! I started a separate blog a little while back to kind of journal what was going on with me and how I felt about it. It was also to track my good days and bad days to try to see patterns and triggers that would help me manage this better.
So, in honor of Invisible Illness Awareness Week, I am "coming out of the closet!" I'm going to share my blog with everyone, so hopefully you can understand a little bit more about chronic fatigue and why I twitch and get flaky sometimes.
http://livingthecfslife.blogspot.com/
10 hours ago
6 comments:
I am sorry that you have had to struggle with this. It is so hard to know what to do with something that probably seems random at times. I am glad that you are able to work through it. Your other blog sounds like you are slowly working it out. We will keep you in our prayers!
Shelli, here's the deal. In our lives as full active members of the church we put a lot of pressure on ourselves and subsequently beat ourselves up every single day . . . which is totally not the point of our religion but I think somewhere in our brains we feel guilty for not being everything to everyone. I do it, you do, my sisters do it, my mom does it, every girlfriend I've ever had does it. In the end none of us are any good if we can't get our own minds straight first. You have to take time for yourself and not feel guilty. Maybe this is your bodies way of telling you so. Your kids are wonderful. How do I know this? I've spent time with them. Sure, maybe you can't do as much with them now as you could 2 years ago but still, you taught them all well from the beginning and they are all pretty much old enough to carry it through now. Each one of them is fantastic in his/her own way . . . in school, church, manners, friendships etc. You've done a great job!! And, maybe you being able to do less has helped them to learn they can do a bit more . . . something that will pay off hugely in the end when you compare them to children who've been given everything, their whole lives, beginning to end. I think you konw what I mean. So, pick yourself up, cheer yourself on and know that you are a wonderful mother and person, one of those that I often compare myself to and feel like a loser because of. You're the mom with the constant smiling face. You're the mom who never raises her voice. You're the mom who's successfully raised 6 wonderful, fantastic kids! You're the mom who supports her husband unwaveringly through rain, sleet, snow and shine. You are the one who always has a kind word for everyone around her despite what's going on in your mind. See, you are the one that others envy as well. So yes, you are struggling with CFS which is a horrible nuisance for sure and you'd love to just throw it out in Thursday's trash but I salute you for doing things right as a parent and wife all the years before this occurred because I think you've made this easier on yourself that it might have been. Its a twisted way to look at a blessing but a blessing non-the-less. I adore you and am sad for you. I hope you can kick it but in the mean time you have to remember that you are human too. You my dear friend are one person who can only do so much as a mother, as a friend, as a wife, as a church sister, and as a professional. You have limits and you gotta remember those and just do what you can with each day. Your kids know you love them. Romney knows you love him. They adore you and even in moments when you wonder? Just wait, once they're adults they'll tell ya. They'll look back on your bravery and the fact that you dealt with that huge dish of problems and still over came them and raised them to be the great adults that they are. Plus, they will have learned from you, their totally awesome mother, that when the rain comes you just have to stand steady with your umbrella and do your best until it subsides and the sun comes out again. I love you Shelli!
By the way, that was Shandee, who moved to Canada, who I admire and compare myself to, who I think is wonderful, and now you see why! I'm blessed to have such a wonderful friend.
I am so glad you are sharing this with us! It is so hard to function and do all you need to when you are not feeling well.And wow, you are still cleaning and keeping up. Impressive!
You're in our prayers! I worry about you!
Your friend sounds wonderful! Too bad she isn't nearby right now!
Shelli... I feel so much for you know. Had an acquaintance who had this (friend of Bob's wife) and it seems like their are no answers, but I'm sure they are farther along with it now. Susan did a lot of reading, and she found something obscure that said it could be caused by yeast.
I figure when you're having something that doctors don't have answers for, it's easier to try off the wall things... ask if they would treat you for yeast and see if that helps.
All of that said, be happy that it's not one of the other things they tested you for.
Do what you can, know that you are loved and you have good friends and family to help when you need it!
Love you!
Aunt Lynda
One more quick comment. I read your other blog and saw so many times you said you feel like a loser... I truly believe that the messages we give ourselves have a huge effect on how we feel both physically and mentally.
One of the things I did with my WW classes was to actually teach people what a success IS.
You are a success when you do the best that you can do at that point in time. Whether the best you can do is just brushing your teeth that day, if you brushed your teeth you are a success.
To be able to completely clean your bedroom made you a success. Whether or not the balance of your house was clean, you accomplished what you set out to do and achieved it in spite of some pretty awesome odds.
Give yourself a break. When you do the best that you can do, you are a success. Whether or not you are perfect, you can be successful. If you are aiming for perfection (and I wouldn't know anything about that!) you will always come up short because it's an unachievable goal.
Do the best you can do, pat yourself on the back for achieving what you set out to and move on.
No one except you expects perfection from you.
Love,
Aunt Lynda
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