I can’t seem to get this blog written. I have started four different times and each time it has just been a mess. I am all over the place. I guess my writing is a true reflection of what is going on inside of me. The last few days I have been on a roller coaster ride of emotions; one moment feeling happy and hopeful and the next helpless and sad. The same event can trigger opposing emotions and create confusion inside of me. What am I supposed to feel? What am I supposed to do? How am I supposed to live?
I guess the trigger for this roller coaster ride happened two days ago. I was trying to get ready for my Tuesday internship hour (I am trying to complete my doctorate in psychology) and my husband called to discuss the “travel arrangements”. I have to have “travel plans” now for any venture out of the house. My husband drives me everywhere I need to go and then he lugs my wheelchair in and out of the van. I love him for this. He is so great about taking me anywhere and everywhere I need to go, without complaint. But as much as I love him for the sacrifices he makes for me I resent the fact that he has to make them. It makes me feel so helpless; like a child. I can’t even take care of myself anymore. His schedule is getting increasingly busy and it is more and more difficult for us to make our “travel arrangements”. I don’t want him to have to worry about me and what I need. He just got his license as a psychologist and he should be enjoying his career, not worrying about me. Yet, he works his schedule around me, takes care of the house, laundry, shopping, and cooking, runs errands, works, and gives me massages. Every time he makes a sacrifice for me I feel guilty, helpless, sad, and loved. It is so confusing.
It is the same with my kids. My daughter is in college and she often asks me for help proofreading a paper or studying for an exam. These are things I used to do with ease. Now she comes to me and says, “Mom are you feeling okay? Can you help me today?” Sometimes she doesn’t even ask for my help anymore. A few days ago she came into my room to check to make sure I was okay. When I am home alone she calls to check on me. When she and I are here alone and she is in her room she offers to take the walkie talkie with her in case I need something. She is worried about me. I should be taking care of her, instead she is trying to take care of me.
My son is a freshman in high school. He should be doing all the typical teenage stuff but instead he worries about me. He hugs me tight a lot more often than he used to and he never complains when he asks to do something and I have to say “maybe later when I am feeling a little better”. The other day I went out to get in the van to go to that Tuesday internship hour and on the passenger side window was written “Mom I ♥ U”. He is thinking of me, worrying about me. He should be worrying about what girl at school likes him, not his mother. I should be taking care of him, instead he is worrying about me.
Every time one of my children makes a sacrifice or tries to take care of me I feel guilty, helpless, sad, loved, and proud. I have raised some pretty great kids.
My family is supportive and caring. They love me no matter what and they try to take care of me. This makes me feel very special. It also makes me feel very sad. I used to take care of them. I was always available, the nurturer, caregiver, wife, mother, cook, chauffer, therapist, party planner, travel agent, peace-maker, listener, problem-solver, and nurse. I was the one taking care of everyone else. Now I need to be taken care of. I don’t know how to do that. I don’t know how to feel about that. Should I feel loved, wanted, cared for, and proud, or should I feel helpless, sad, guilty, worthless, confused, and angry? I guess for now I will feel all of the above.
4 comments:
Butterfly girl,
Your life has completely changed so it is completely normal (in my opinion anyway) to feel all of those emotions. I haven't been in your shoes, but going from being active and healthy to basically non mobile would be so hard. Also I sympathize with you on the whole "being unable to be the one who needs taken care of". Most good mothers/wives are probably guilty of that one. Even when I should be on my sickbed, I don't stop. Don't beat yourself up over these emotions, let them run their course. It sounds like you are an "artistic" expressive person and so therefore you "feel" a lot good and bad. That part I understand. Have a good day:}
Illinois Mary
COUNT YOUR BLESSINGS Butterfly girl......I have had this disease from hell ever since i had a breakdown (from unrelenting/ongoing stress from my marriage) 15 yrs ago. My husband never even knew I had a breakdown and only exaserbates my symptoms by ridiculing me and not understanding this medical condition. I had CFIDS for 10 yrs before it was diagnosed. I need to blog my story!
Anyway, do you have any suggestions that would help my husband (that is divorcing me at present) to understand that I am not just "lazy"....eventhough my interenist provided a letter with diag. and prog. of disability, he still refuses to accept it for what it is and just calls me "crazy"!
Thanks for listening and for any help out there.
Hi again,
Ok this made me cry, I too have wonderful kids and also feel the guilt your feeling. We want to be the strong ones and take care of our kids, not have them take care of us just yet. But at least in this screwed up world we have good and compationate kids. I still smile when I remember how my son used to help me out of chairs and not let me get up, waited on me, when I was diagnnosed with Asthma (diagnosed after 15 years of trying to find out why it was hard to get in air into my lungs and then told I've probably had it all my life. We need better doctors!!!). He told me a few years latter he though I was going to die. The best thing is to allow you kids to know everyting about what you are going through and about CFS. Kids are smarter than we give them credit for.
And to Anonymous, just divorce the guy and to hell with him, I'm still having trouble getting the men in my life to understand when I went through severe PPD. And now its finally being address publicly, (no thanks to Tom Cruse) so soon they will be address CFS. But don't expect your ex to realize this applied to you. He wouldn't have lasted through anything, thank got you didn't get hit by a car or got cancer because he wouldn't have supported you through that either, your better off. I wish you happiness in a future mate.
Love to you both, Debi
Gee, I've never "blogged" before....hhhmmmm, I can do this as I am horizontal (on the sofa and of course, resting, but a better word needs to be invented as "resting" conitates one will be full of energy if one simply gets to rest long enough which we know is not the case...).
After 3 years of knowing something was terribly wrong, a hospitalization, and seeing many specialists that hadn't a clue, I finally found the right doctor, the only one listed for Florida on the CFS national website. I've been in his care since August and am operating at about 50% 3-4 days of each week which I perceive to be a major improvement!
But the 6 months prior to this, I was flat on my back, on medical leave from my job of 15 years (university professor and assistant director of the undergraduate education/ initial teacher preparation program), and seeing a psychologist and psychiatrist weekly, then every two weeks by August... April, my daughter graduated from college and re-located from Tallahassee to Orlando in August. She found a job by September and is very happy with herself by now. I am so greatful my collapse did not negatively impact on her stepping off into adulthood. I am also greatful that I received disability just as my financial resources were depleted. Of course, its interesting to try and live on half of one's income....
I have been so forunate that a friend was able to come by daily and call before he came to see what I needed from the store and drove me to my doctors' appointments as I could not.This way I did not have to ask my daughter to come home and take care of me!
The best thing in my treatment is self injecting B-12, daily if need be, as it cleared my head by the next morning. The next best component of my treatment has been the aqua-therapy I do, three times a week.That is the only thing that has helped with the horrific pain in my legs and upper body.
My doctor works with me to conquer the problems I have with the sleep disorder and constipation parts of this. Each month we try another approach, although I have basically given up on whether these problems will improve at all and if they do, perhaps time will be the best treatment.
I have now been away from work for a year and had to therefore resign recently. Now I have no pressure to try and resolve the lack of sleep problem, meaning, if I don't fall asleep until 2am what does it matter. All doctor appointments and aqua therapy do not occur before the afternoon so there is no rush to get up/out.
I have found I do better with this realization that I no longer have any "trains" to catch and that while my life is now so different from what it has always been,spending my energy on wishing I had my life back is not going to bring my life back, which was not allowing me to move forward with trying to find self fullfilling moments and contentment now.Different does not have to mean complacent. I am so proud of myself now when I am able to perform my daily self care skills, This may be all I ever accomplish on a daily basis but this is a better place than I have been in...
I see it all as a matter of taking very little steps and am so glad I have accomplished each successive approximation as this is so much more progress and achievement than when I could not do anyhing but lay there.
BE PATIENT wih yourself. Decide what one thing you want to accomplish for now and then keep only that in your thinking. The right treatment can bring improvement and accomplishment(s) come with improvement.
No one at my place of employment grasps what has happened/is happening with me, nor do my 2 brothers and their families.
I know it is hard for my daughter as her dad died two years ago, so I do try to allieviate her fears that while I may be "down" this is not a terminal situation.
But what this is is what you see and some minutes are better than other minutes... I have been able to get the right treatment to help me see improvements and a doctor who assures me he has many things to try, some of which I may see a benefit from and some perhaps none, but that there is always something more to try.
I salute you as while you are undergoing all of these changes, you have added a new behavior in spite of things that drain you and that behavior is this blog! This appears to offer a platform to not only help yourself but many others as well! So,I would say you are not complacent, you are having a positive impact in spite of the challenges CFS has presented to you. Take care.... (wow, I guess I really needed to share with someone who would understand as I realize this comment has become quite long and has taken me over several hours to complete; but I did accomplish this!)
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