Thursday, October 9, 2008

A House is Not a Home

I have been living with Chris and Kyra this week. Their blog HERE. I like it here, living with Kyra and Chris. I always have someone to talk to. There is someone to do the dishes. I don't have to look at the mess that is my place.

That's the big one. I have been home this week to pour my meds, get a change of clothes, and do a load of laundry. ...the activities listed in yesterday's daily post. Those activities, the ones that I went home to do, totally exhausted me. I'm a mess today. Kyra and I went on our daily walk - Kyra actually went on THREE walks yesterday (That's how desperate we are to get this baby to come!) - but since our walk I have just been exhausted. I took a four hour nap this afternoon, and woke up in lots of pain. My problem is not having enough energy to do what needs to get done - or when I find the energy, I pay dearly for it in the next few days.

The pain - that's an issue I need to write about, but I haven't yet decided if this is the right post to do that in. Well here goes.

I am at a crossroads with the pain. Do I keep fighting to "fix me" or do I give up and accept the fact that I'm always going to be in pain? Do I throw my hands up in the air, shout, "You win!" and plan on being in pain for the rest of my life? I mentioned this already, but I'm just not able to get things done the way I am. Do I accept that fact, and return to watching hour after hour of trashy television and napping all day? Or should I do the things that need to get done and suffer for the next several days?

I'm also at a crossroads in deciding what I need to do for me and deciding how I'm going to live my life. I feel left out. I feel forgotten. I feel unloved. Most of this, is because of the way things are with my family right now.

I want to get along with my mother. I want her to go to therapy and get all better so that she can be my support and my helper when I need her. Because sometimes I just need my mother. She has been there for most everything I have been through - and now I feel like she just doesn't want to deal with it anymore. I feel like my hospital stays have become routine, and therefore I am not protected from the anger. My mother shoots balls of fire when angry, and I am most often the one getting burned. She used to not get mad at me when I was in the hospital - but as my recent surgery proved once and for all, I don't get to use that card anymore.

Now she doesn't even want to listen to me complain about anything. I can understand that listening to your daughter talk about how difficult things are or how horrible she feels could be awful - especially when you can't do anything about it, but I want support. I want someone to listen.

I tried enlisting my dad and brother to be my listeners. It failed hardcore. They are both busy, for one thing, and the other thing is they are both male and hate talking on the phone.

So I feel left out. I feel like I can't count on anyone anymore. I have to distance myself from my mom, and my dad can't come down to help me as often as I would like, and my brother, well I don't know. I ask my dad and brother to come help me on weekends, and they always moan and groan. I know I'm a burden, but if I'm asking for help, it's because I seriously need it. I have stopped asking so often because I don't like being turned down. My brother was supposed to come down and visit me this weekend, and I was really counting on his help.

I feel eternally left out - not just my family, but my friends and even the CF support group now, too. I don't feel normal. I feel there are very few people who accept me for exactly the way I am. Most of my friends accept me when I'm healthy but are confused by me being sick. I feel like I get left out a lot because I'm not in school and I don't have a degree. Sometimes I think it's because I'm more independent, but I think I'm more independent because I'm not as accepted.

I feel left out. The CF group is making a group for only couples - our "couples" group has dissolved into a "whoever is around" group and it's no big deal if you don't have a significant other. I feel at home there, because they all understand. I felt even better when I stopped having to worry about who would attend my CF group meeting with me. Usually I would take a friend and make them feel very uncomfortable in a room full of sick people and the people who love them. But now with the group just for significant others and the CFer, I feel left out. I feel left out because I'm not in a serious committed relationship. BURN. ...because that isn't an issue I have or anything...

I feel I am going to have to give a lot of things up because I just don't know how I can have energy for other things and still take care of my house. My house doesn't feel like a home. I want it to - and I want it to be clean and organized.

Chris and Kyra have a home. Living with Chris and Kyra makes me feel loved. It makes me feel part of a family. I don't know what to do about my family or my house. I guess I'll just have to figure it out and move on.

Where I will get the energy to figure this out, I don't know, but I guess I'll find it somewhere. Just like I always do - I'll figure a way to get through all of this. I'll either fix my pain or learn to live with it. I'll fix things with my family or I'll distance myself from them. I will find a better place. I'll make where ever I am a home.


Jen said...

I am sorry you are feeling left out. I know what you mean about your hospital stays feeling "routine." everyone knows you go in the hospital so even though you feel crappy they assume its "just a tune-up" and don't think its a big deal. I also wanted to mention something to you, I know you have medicaid and I don't know about your state but here in FL if you live alone and have medicaid you should be able to get home assistance for things you can't do yourself (ex: cleaning, moving stuff around, help with your meds etc.) that way you could have a clean apt. but not waste the little energy you have doing it yourself or have to depend on your mom who would come and help you but then make you feel bad when she is there. I tried getting that help for myself but since I am married they say my husband could just do it (which he mostly does.) I don't maybe this will help. let me know.

jazzygal said...

Hi Dancing,

I've come across your blog through our shared interest in dancing. I hope you don't mind me dropping in.

I'm a mum of a boy with Autistic Spectrum Disorder(mild-at this stage). I also have a mum in a nursing home, at 69 years of age with bi-polar and depression. I mention this as a point of introduction.

I can't even begin to imagine what it's like for you. I agree with what Jen has to say. I'm not familiar with what's available in the States but here in Ireland we have some Home Carers available to help out at home with people who need the assistance. This is provided by the state. But, with cutbacks not enough hours are given and not everyone who needs it gets it. It seems that something like even get support dealing with the everyday mundane stuff would leave you with some energy to do something you'd like to do.

A support group sounds least you meet people with similiar issues. It's the same with families when you have a child with Autism.... believe me! They just don't understand.But why a group for couples only???? Don't single people get C.F.??!

Now, if you had some help at home maybe you'd get enough energy to set up your own SINGLES C.F. group!!

I hope things get a little better for you soon.

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