Better Days

There are better days.

Between my last post and this one, I had a ruptured ovarian cyst that nearly made me pass out, put me on Darvocet and laid me flat for most of three days. Not better days.

Today, amazingly, I had some energy to spend.

I got up at 4 am, prepared and served 3 meals, washed 4 sink-fulls of dishes, put away 3 loads of laundry, wrote 2 business letters, filled out 6 medical forms and cleaned 2 catboxes, but I still can't go to the ball.

Poor Cinderella! Even the good days are catch-up days. The floors are still dirty, there are more dishes and more laundry to wash, I hoped to vacuum, I was wanting to bake something, there's snacks and dinner to fix and I promised to get some writing done for The Project.

Beyond that, there's a long to-do list, and more piles around the house---the house we moved into nearly four months ago, with boxes still piled high and furniture still not in place and the dog fence still not built, which would spare me that painful walk on bad days. Piles of paperwork unfinished. More contacts to make. I haven't gotten an answer from my disability lawyer or my doctor about medical tests. If they knew how hard it is to clear my brain to write each email or lift the phone to make each call, would they be more responsive, not force me to ask two or three times?

Yesterday was a bad day, and it was all I could do to get dressed. Walking the dogs had me nearly collapsed double on the ground, so back I went to bed. My weller kid will travel for several hours this weekend to a regional choir competition and there's no way I can accompany her. In better days I would have been one of the parent chaperones, one of the drivers, would have brought along my sicker kid. Now all we can do is wish her bon voyage and good luck.

I went to a movie once this year, and to a play once. It was all I could handle, though I rested up for days before and after. In better days I used to hike, dance, kayak, travel, volunteer, garden, so many things lost to me now. There's so much more I long to do, beyond what I just have to do for basic maintenance. Being sick, just basic maintenance is a dream.

That's life, sometimes we get sick, sometimes we stay sick for three years, or thirteen, or twenty-three. We have to let go of some things. I've only been sick three years so far. It could be worse.

But that's just it. It might get worse.

On a really good day, like today, I can get quite a bit done, but it's still not enough to catch me up.

Women with ME/CFS often see symptoms worsen with perimenopause. How can I plan for the possibility that I'll be worse? With so much undone already, how would I survive, sicker than this?

Maybe I could get help?

I'm only making it as well as I am, now, with a lot of help. This week, for example, my sister took me to an emergency doctor appointment for an acute problem. She did grocery shopping for me twice. She cooked dinner for me and her out of town guests, family from far away. When the guests came to visit me I had to be in bed for their whole visit, and they picked their way through my filthy house and while we talked they folded laundry for me.

It's hard to imagine what that visit would be if I were sicker, how my kids would survive if I were sicker, what would be left for me if I were any sicker than I am now. It's already so hard, and I have to prepare for the possibility that it will get harder still. How?

If my disability case is approved, maybe I could apply for in-home assistance, but I've already heard that there are so many budget cuts these days, it's almost impossible to get in-home assistance.

Is it pathetic that I spend part of one of my better days worrying so much? What will happen if I get sicker, if I don't get disability insurance, if my sister moves away? So many things could go wrong and to worry about them would be considered responsible, realistic, planning ahead, if there were actually anything I could do about them.

Maybe I can just avoid getting sicker, by avoiding pushing myself: more damage is caused every time I push. That is, I must somehow do even less on my better days.

Comments

creekfeet,
it's so hard not to worry, not just about ourselves, but our families. thats a tough one for me also.it scares me so that my kids might not have me around as long
as they need me, i constantly worry about them :(
I'm so sorry your having the ruptured cysts, thats probably as painful as having a baby. Unfortunately it's real hard to not push especially if you were (and you sound like you were) a Multitasker. I sure was and make myself sicker everytime i get a small reprieve & feel a little better.
im trying to just pick ONE thing to do on my good days, even if it takes me all day to do just that one thing.i know it's frustrating, and sad. But hang in there! If we ever get something rolling that will cure us or at least make life tolerable, we will Probably never sleep again!!lol.
Kat
 
Creek,
Thank you for writing this. IT is exactly how I feel. This illness takes you down to the basics and below. I worry about so many things I didn't even 3 years ago. I have to climb 3 flights of stairs to do laundry. I think sometimes, how am I going to do this on really bad days? I never used to have those thoughts, I just did it. I am a multi tasker and a perfectionist. It is extremely hard for me to be idle and yet so many days I have no choice.

I am in perimenopause and not to scare anyone, but in all the years of this illness, there has been nothing that truly brought me down until this. I never knew what I was in for. Having said that, not everyone has that as bad as myself. My main defect with CFS has always been hormonal. So, it makes sense that this is a major problem for me. I want it to be over and hope menopause is better.

I know well what a ruptured cyst feels like because I have/had endometriosis. I would feel that sharp pain during ovulation and sometimes would need to take dilaudid and get in a hot bath to calm it down. It was awful. Now that I am in perimeno, my endometriosis has calmed down, which at first I thought was awesome. But instead of pain, I now have hot flashes, mood swings and sometimes literally feeling crazy. So, I traded one for another. I would rather have pain. I have never had this exhaustion until perimenopause. It's crushing and all consuming.

I worry about the future, but as we all know, worrying about it doesn't help our current situation. You get to a point where you are not living in the moment, but in the past or worry of the future. We have to deal with the present and roll through that as best as we can and only hope for a better tomorrow. Easier said then done.

I am so glad you have a really helpful sister. That is truly a positive. A blessing.

Take care of yourself and thank you for this blog. Also, know that you are not alone. Many feel just as you do.
 
Thank you all.

Sure enough I pushed too hard yesterday and this morning and am down again now, back to bedrest, but more grateful than ever for this place where my ups and downs are so well understood. I keep being tortured by shoulds and shouldn'ts: I should be able to get things done, I shouldn't worry, I shouldn't write long diatribes about how crappy I feel or how worried I am, that sort of nonsense. But when I go ahead and write, you wonderful people have thanked me for the writing.

I can't tell you how great that feels. <333
 
Thinking of you Creek... Not having a good day at all so I know how it feels. Only you have 2 kidlets to take care of and the pressure of disability. I am glad you got your sister around. Take one day at a time. :hug::hug::hug:
 
I think it's incredibly hard to raise children while sick. On top of that your children are sick too. It must feel like an impossible task to ever find that balance, and I think it is. And yet . . . here you are strong in spirit, sharing your journey with us. You are touching all of us with your words. I'm glad that sometimes we're able to reach back and touch you too.
 

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