Lindsey & I

Posted by & filed under blog, Caregivers.

Today… as a caregiver I pray for more strength to help me help my daughter.  This week it has been one issue after another with Lindsey, the rest of the family, my health, as well as my marriage. At first I wasn’t comfortable airing this part of my life… but Lindsey has explained to me how important it is to share the struggles I go through to help give other caregivers the strength to share theirs as well (or at least read mine and comment). So I hope that by my sharing all this, no one takes it as complaining and instead sees me as someone trying to do the best I can.

This week has been  really  emotional  and difficult for me to be  available for Lindsey. Leading up to the Launch Event for Bent But Not Broken, things were tense between us as Lindsey slipped into “robot mode” I’m calling it these days. When she is feeling awful but HAS to get things done, she becomes very robotic, emotional and cold. That is so hard for me to see happen as I am a very warm and loving person. She speaks to me almost like an employee when she is in this mode. But instead of ruffling feathers, I continue to help her with any aspect of her daily tasks as I can. I help wake her up everyday at the appropriate time she needs so she doesn’t sleep through anymore meetings or stay in bed until 1:00pm. There is also the need for me to continue giving her hope when there are no answers… reminding her of her purpose with work, charity, life, etc. so she doesn’t give up her fight. So many people see Lindsey as a strong fighter… I get to see the sad, hurt, and angry daughter that just wants to be done. I do see the other amazing side to her as well, but living with her on a daily basis I see other aspects of her that her friends and clients don’t see.

The Bent But Not Broken event was a definite success and I’m so happy to see so many people support her and this amazing cause to help BOTH patients and caretakers. But the week following the Launch Event it has almost been like a crash. My husband and I had to return to the venue to clean it all up as Lindsey was in bed for almost 12 hours following the event. Which of course I don’t mind doing, but not something we planned to do. So being in the middle of a move ourselves, I had to ask my husband to stop what he was doing to go down and help me.

So before this turns into a venting session, I’ll list out a couple of the struggles I’ve had this week and hopefully some of you can relate:

**  I often feel guilty for not having enough time or energy to take care of my husband, or listen to his problems or his concerns. We are getting older too and this is our time that we should be enjoying together before we get to the age that we can’t anymore! So this definitely puts a strain on our relationship.

**  I wish I had more control over my daughter’s health, happiness and sleep. I know that she doesn’t sleep well (or much at all) so how can I complain when I’m tired?  I can’t sleep because I worry every day about her and what I can possibly do to make life easier on her.

**  I’m constantly angry at the medical profession for making someone with this illness feel like this is something they are making up, and that the illness is in their minds. I’m angry at the judgement of others towards me and my daughter. How can people even begin to understand what Lindsey or I go through if they don’t even understand her illness?

**  I feel helpless to be able to take care of my own health.  Fighting to try to make things better for my daughter diminishes my own health as well. Recently I’ve had some health issues arise that I don’t tell her about or don’t take care of because resources are dedicated to helping Lindsey. This also upsets my husband and he is worried about me as well.

It is a lot to take in all at once for one person. Did I mention any support with my family or friends has been like pulling teeth from a tiger? My oldest sister has been incredibly supportive of Lindsey, her illness, the event AND my emotional state. So supportive I’m almost brought to tears, but incredibly grateful nonetheless. With all of that sometimes I want to just sit down and cry, but somehow I find hope and I must keep going.  Hope takes over being tired, small accomplishments take over discouragement. Then I remember how lucky we are still even with all these issues we are dealing with. Tomorrow is a new day and a new beginning of yet another battle to be fought ….and we will win, my daughter and I, we will win one battle at a time…..

There are so many thoughts I want to convey to everyone but I fear it would be a book rather than a blog post. I’m new to this whole blogging thing and the need to organize my thoughts in shorter segments for quick reads, so please have patience with me while I figure it all out. My thoughts may be scattered at first but eventually I’ll get it  :-)
What Is CFIDS? Find out More Here

 

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