Wednesday, May 27, 2009


Since that was the topic I left off on before all this started, I wanted to pick up the thread briefly again to say I have been self advocating these past few months, and although it is exhausting and frustrating, it is so necessary! I don't have a spouse or significant other to take care of it for me, so I have to take care of myself. There are days I can't do it, I won't lie, but I try my hardest to fight for me, because let's face it, no one else will!

The fact that I have put thought into things BEFORE a flare or catastrophe has helped to make things easier. I have also accepted any and all help offered, no matter how small or insignificant it may have seemed. Anything I don't have to do is a help right now. If someone offers to pick up milk one day, I let them. If they offer to make a phone call or drive me, I say thank you! I can't be proud and pretend I can do everything when I am falling apart myself.

I still don't have a perfect support system. Other than my mom, I have no family help at all. I have few friends who understand or even offer. But there are some people who try and I appreciate it. I am brainstorming right now as to other resources for help, perhaps through my church, because we need the help. The point to advocating isn't to perfect, it is to keep trying and to not give up on finding help when you need it. It is also about being that help when you can.

I can and do offer myself to others when I am able because I know how hard it is. Believe me it comes back to you sevenfold. I don't do so others will help me, I do it because I know how grateful I feel when my neighbor offers to run to the store for me, when someone else takes the trash or recycling to curb on Sunday nights when I can't get out of bed, etc. . . Be a friend to others and you will always have friends. Some won't ever get what you are going through, but that's alright. It isn't a score keeping game, it's life!


Jeannette said...

WOW, you poor soul, there is nothing worse than having it all go at once. I do really understand as I have been there. Actually a few days ago I had a MAJOR meltdown and had decided I couldn't take it any more and was deciding to leave the planet. That was a little too close though...Something about chronic pain that drains the living life out of you.

I do however have something that you do not and that is the extra support. Outside of friends or neighbors etc. that you speak of a I also have my husband who (most of the time) is awesome. I really feel for you there as I have no idea what I would do without his help. I suppose you must just have to drag yourself around suffering to accomplish whatever you must when you don't have help. Geesh that must be really hard. Your poor mother too with the shingles, I too get them every few months and they are awful. I truly love having the ability to communicate with someone that understands and since I began following your blog and receiving your posts via email I have prayed for you every day, without fail. If you are anything like me you must ask "why" sometimes. I know I do and wish there was an answer as to why some of us have these chronic conditions and needlessly suffer while others get to remain healthy. It is a tough road, but I for one am so very grateful for people like you that understand.

I will continue to keep you in my prayers, I wish you the very best and for your mother as well.

Take care,

One Mom said...

I have to be my own advocate as well since my husband is unable to do so and my grown children would rather pretend that I don't have any health issues. Fortunately that has wowrked so far. I can't even bear to think of what would happen if I were "out of commission" for any length of time. Wish I were closer to you (I think we're on opposite sides of the state!)but know that you are in my thoughts and prayers.

Maureen Hayes said...

Jeanette and Terri,

Thank you both for your support and your understanding. Jeanette, you are lucky to have a supportive husband, but I also understand that it isn't a magic solution to our problems. No one can take our pain away from us or fight all our battles.

Terri, I understand how you feel having to advocate not only for yourself, but for your husband as well and having your children want to pretend it is all alright. My mom is good about understanding that things aren't right, but my other family and some friends aren't so I have to advocate for myself as well most of the time!

Right now I am so beaten down that it seems like giving up is the best option. I know in reality it isn't, but I feel like hiding under the covers for a few days and hoping things get better on their own! Not a very practical solution!

Thanks again for the friendship and concern, it helps more than you will ever know!


Alicia said...

Maureen ... I have not posted a comment until today, but have been faithfully reading your blog for months. I relate in so many ways to your situation, although my particular condition revolves around chronic dizziness. I, too, am going it alone with very little outside help. I could so relate to your comment about giving up seeming to be the best option. I have been there many times. I have even decided to "give up." But the fighter in me always rears its ugly head, & I start fighting again. Often quotes get me through some of the hardest times, & the one I'm clinging to now is on a magnet prominently displayed on my refrigerator door: "Never never never give up" (Winston Churchill). Five seemingly simple words, but extremely powerful. You & your mother are in my thoughts & prayers as you continue to face the challenges that come your way ... Alicia

Brenda said...

I feel your pain, literally. I've been there, no support, a single parent trying to work to take care of kids (now grown) and the disability route.

Mostly, I was surprised how many friends I lost when I became ill and my family did not live near me and when I did live near them, well...they were no support.

I haven't read all your posts, but trying to find a support group would be the best thing for you right now.

I also have a blog although I haven't written lately, we seem to have similar illnesses. Here it is and maybe there's something there that will help you.