Sometimes I just want to give up. I hate being such a burden to people. I feel so damn useless at times. I still haven't figured out how I'm going to transport my new electric wheelchair places. So, I am still relying on others to take me anywhere I have to go.
I have a class at a pain clinic on Wednesdays that I'm supposed to start this week. It's a 30 minute drive. I can't drive that far. It just wears me out too much. Well, I can drive that far, if that's all I have to do. But then I have to walk into the building, go up the elevator, walk down a long hall, sit in an hour long class, and do it all over again in order to get back home. I can't use my manual chair because I wouldn't be able to get it in and out of my car. Besides, wheeling myself is just as tiring and difficult as walking.
So every time I have to go to a doctor's appointment or something else that is not a short trip (like dropping my daughter off at a friends house or soccer practice), I have to have someone help me. I hate that. I used to be such an independent person. Now I have almost zero independence.
In addition to that, I feel like a burden to others. No one would admit to it, of course. But that's how I feel.
I want my 12 y/o to live the normal life of a 12 y/o. She is always taking care of me. She has definitely had to grow up a lot quicker over the last couple of years. That's not such a bad thing. However, she has to take care of her little sister and do a lot more chores than she would have to do if I wasn't so sick.
It tears me up inside that my illness is affecting everyone else's lives so much, especially my daughters.
3 comments:
Robin, you're singing the theme song of chronically ill folks. Especially those without transport for their nifty electronic ambulation devices. Since I'm single, I either have to do everything or ask a lot for help from others. Tons of rides, neighbors to help move furniture, anything.
A friend who has taken me to countless appointments, has been rather rugged with me when I apologize, beat around the bush asking or just plain make a big deal. He's helped me realize that it's harder for folks to help us when we're hung up about it. You know, feeling guilty, angry about how independent we used to be, yada, yada. I'm learning that matter-of-factness goes a long way in contributing some grace to a less than perfect situation.
I also think that your daughter, despite some losses, will grow up with an extra level of sensitivity and thinking of things outside herself that won't be a totally bad thing.
Hey, good luck with some transport for your new chair.
Donna
Donna,
Thank you for your kind and insightful words. I needed that as my frustrations with the world are continuing on through today.
I also need to remember that I, at least, have my husband and daughter to help. I can't imagine how hard it is for you being single and not having anyone to help you around the house.
Robin
Bibliotekaren said a lot of what I would say too. Between the lack of independence, the feelings of burden and the mummy guilt its a hard road. I don't know the answer to any of it, I do know it takes time, sometimes quite a lot to find you feet again and get to the place where you can start to look at it all without being overwhelmed. I'm better now but the mummy guilt is still a big one for me. I do know in many ways my kids are more well rounded, compassionate and self-reliant than a lot of their peers, but I still hate how they are growing up. The independence issues still makes me swear and push myself too far to try and do things that I really can't do anymore. My levels of frustration and guilt have lessened over time but I don't think they will ever go fully. I don't know if it's any solace to know you're not alone or that what you feel is normal given your circumstances, but there are many of us who can empathise and are sending love your way.
Post a Comment