The Halloween hangover

Ugh.

I survived my Halloween “adult trick or treating” as Sunshine would call it.  I was out on Sixth street in Austin until about 2 am.  And I loved it.  

We haven’t been “out” like that since our wedding (June 2012).  So it was great to dress up and join the masses of crazy people in Austin.

I looked amazing.  I won’t post pics here, I know Sunshine’s sperm donor probably still reads this blog.

But I was decked out.

I just loved seeing everyone in their costumes, seeing people having fun.  Listening to music.  Quasi dancing with my husband.  

I was permitted to sleep until 11 today…thanks to my husband and the rest of the family understanding.  

This was a big deal to me.  I was able to go out for hours, in boots, have a few drinks and stay out late and I’m not dead today.  That’s progress.

No way on this earth I would have been able to do this a few months ago.  Let alone a year ago.

I guess one of the really shitty things about chronic illness is giving up things that were enjoyable.  Not that I was particularly athletic before the fibro, but I could shop, hang out with friends, etc without needing a nap an hour in.

I also know that I am getting older (and so is my husband).  We can’t hang with the 20 somethings anymore.  But just having the health to be able to try is wonderful.

So I’m just resting.  I’m just recovering.

This week it is now Sunshine’s turn…bring on the Trick or Treating!

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We won’t get fooled again…

Yes, I’m a classic rock fan…

I’m extremely angry, hurt, sad right now.  I moved in with my parents with reservations.  My mom is seemingly incapable of compassion and support on a regular basis.  My dad is fine, he’s quiet and usually doesn’t do well with hearing anything about my illness, but at least he’s consistent.

My mother on the other hand is just being cruel.  For awhile, she was very supportive “honey, do you need to rest? what can I do for you?” Today she just got vicious.

I have been flaring for the past two weeks.  Pain, fatigue, insomnia.  This isn’t a new phenomenon.  It has happened nearly every year since I was diagnosed in 2005.  When the weather changes, I get sick.  Usually with a combo of fibro symptoms and migraines.  This year is no different.

My mom is obviously unhappy.  She and my dad aren’t getting along, she hasn’t really dealt with my grandfather’s sudden death, she had a pretty traumatic trip up to Pittsburgh in August when she was visiting my grandma.  Threats were made, names were called.  It was awful.  But the difference between me and her is that I would have DEALT WITH IT.  She absolutely refuses to go to therapy.  Everyone else is the problem.  Everyone else is treating her poorly.  She’s fine.

It is pretty clear to me, as her daughter and as a medical professional, that she is experiencing depression.  She is sleeping a lot more, she is irritable, she is spending more time in front of the TV.  She is creating issues and problems and at least once a day throws some sort of hissy fit.

She is deliberately picking fights with me, I think in an effort to exercise some of her pent up emotions toward her family, my dad and with regards to her grief.  Yet, she always seems to make it about me.

According to her, I’m pulling out the “sick card”.  I’m using my illness to my advantage.  She knew this would happen.  Fuck, I KNEW this would happen.  But my back was to the wall.  She promised she would be supportive.  She told me that she understands and will make her best effort to help me.  Right.

Here is an excerpt from her latest text.  BTW, this latest argument is because I told her I can’t clean the bathroom today because I feel like shit, I offered to clean the bathroom tomorrow with the help of my husband (since the chemicals bother me) but she refused:

No, I’ve been fooled too many times to accept your solution. I understand your illness, just don’t honor it like the rest of the family and will call you on it just like you pull out the sick card when is suits you.

She continues:

I don’t think you realize how your illnesses have affected your family.  Hell no they aren’t going to say anything that will conflict with your statements of ill health, its easier to shut up and do it.  Me, not so much…your illness has become the center of your family life and I’m not sure if it is healthy for anybody.

Now, she is speaking for my husband again.  I have a very open and honest relationship with my husband.  Trust me, he is not afraid to share his opinions when it comes to my illness.  The fact that we are still together after four years and one extremely dire year of illness and upheaval speaks volumes as to the type of relationship we have.

I have adapted well over the past eight years.  I am raising a wonderful child who has also adapted to my illness.  Is it perfect?  No.  But I honestly feel that I am doing better than most.  And according to her therapist, Sunshine is extremely well adjusted and my illness is not having any more impact that normal on her development.  Keep in mind that I was diagnosed BEFORE her birth.  I knew she wouldn’t have a normal childhood.  But I wanted to bring her into the world anyway.

Just because things aren’t done to my mother’s specifications and done on her time schedule, it is a problem.  And to bring in my family life when she has no idea what she is talking about, that is just cruel.

I guess it hurts more because its my mom.  She is supposed to love me.  She is supposed to support me and have compassion for me.  It also hurts more because she has periods where she is so supportive.  Where she encourages me to rest, to conserve my energy.  Where she “understands” that I’m not feeling well and doesn’t expect me to jump when she says jump.  This about face is what really twists the knife.

So now, unless we give her more money, she won’t feed us.  We are “on our own”.  I paid up in the beginning of the month.  I have the cancelled checks.  Extortion.

So I will pick up Sunshine and will go to the park until my husband is off of work.  Then we will find dinner.

This makes me sick.  It makes me so very upset and angry and frustrated.  I’m trying my best.  I’m exercising, I’m eating better.  I’m taking my medications and following doctors orders.  I’m trying to strengthen my body so I can continue to work.  Other people see it, namely my dad and my husband.  Hell, even my friends see it.  But she just has to make an issue about something.  There can’t be one day without her having some sort of dramatic fit about something.  And it hurts.

I do want to clarify that we are pretty awesome house-guests.  Everyone does something.  I cook and do the dishes and my laundry.  So does my husband.  We aren’t noisy, we aren’t pigs.  Sunshine even picks up after herself.  My bathroom wasn’t spotless and she chose to make it an issue.  I understand that it is their house, their rules, but I expected a little bit of compassion and flexibility.

I won’t make that mistake again.

I will be back in therapy by the end of the November.

Being Mummy

I love Halloween.

I am thrilled to be able to actually participate this year.  Last year I was essentially chair/bed bound for most of the festivities.  My husband took Sunshine trick or treating, and I missed out on my annual 6th street Halloween bonanza in downtown Austin.

This year, I’m feeling better.  I’m taking Sunshine door to door.  We are being a Mommy leopard and a baby leopard (her idea, not mine, but its cute).

And I’ll retain the leopard costume for my own Halloween partying this weekend.  Only a bit more risque.  Despite the fact of my massive weight gain (which is slowly melting off), my husband still makes me feel like the sexiest woman alive.  I feel confident enough in my body that I can look sexy despite the extra padding.  I never had that kind of confidence in a relationship before.  And I’m grateful to him for loving ALL of me.

I am also hosting Sunshine’s Halloween themed Girl Scout party this week.  I wanted to go all out.  I like baking, and I wanted to do something really cute for the girls.  But I’m still flaring (although not as bad).  So the Halloween themed snacks will be scaled down.

But at least I’m well enough to participate.

And I will have health insurance at the end of November via my husband’s employment.  That is such a relief.  I am seriously in debt from the past year.  It’s wonderful to know that if everything does flare back up again, I can afford treatment this time around, and not add to the already mounting debt.  I am struggling with Sunshine’s sperm donor to get the documentation needed to get her covered, either via my husband or from the state.

At this point, I highly doubt I will be able to return to full time work.  I have worked my ass off since the end of August, and it is taking a toll.  It was only five hours per day, but I’m exhausted.  I hurt.  Not enough to keep me in bed, but enough to make things a bit difficult.

I’m not sleeping again, I was up til 3 last night and woke up at 7 to get Sunshine off to school.  Then I went back to sleep until noon.  I didn’t plan on it, but my husband was wonderful enough to let me sleep.

I’m babysitting one of Sunshine’s friends today, and I am planning on taking them to the park.  I was going to get my workout clothes on and walk with them, but I’m too tired.  I may do something on the exercise bike tonight.  My parents have a stationary bike that I can use.

Wow, typing is really flaring up my joints right now.  Hasn’t happened in awhile.  Shit. If this continues I may need to see my docs sooner rather than later.  I hope it holds off until I get insurance…

Sleep attack!!

I don’t have narcolepsy, but I call the extreme fatigue spells I get “sleep attacks”.

I worked my last six day week this week.

After work yesterday, I made cookies for the local domestic violence shelter (who helped me when I left Sunshine’s sperm donor) and then we had friends over.  I was in bed by 11.

I didn’t sleep well…at all.  Despite the meds.  I’m having RLS symptoms all over, not just in my legs.  I’m going to try to get to bed earlier tonight and meditate to help myself relax.  Providing that I can after watching the premier of “The Walking Dead”.

This morning, I woke up, had breakfast with the family and iced those six dozen cookies.

I made the beds (including clean duvet covers) and just lay down “for a minute”.

Despite the yelling, screaming, cursing that usually accompanies Steelers and Eagles games in this house, I was out like a light for more than four hours.

I wondered why I was left alone to sleep that long, but then my dad clued me in.  “The Steelers were winning.  You are obviously bad luck”.

So, thank you, Steelers, and Eagles, I will now be allowed to nap during the games for the rest of the season.

Flaring and a quick update

First order of business….the inflammation in my eyes is back.  Not horrible, not enough to require treatment.  But its back.

That was a little disheartening.  But we did have a conversation about future treatment, should I need it.

I have been off of steroids for nearly two months.  Off of chemo for almost five.  I do not plan on EVER going back on those meds.

Doc said if he needs to treat the new inflammation, he will do steroid injections into the eye.  Which is what I wanted to hear.

So that’s good news.

Fibromyalgia has been rearing its ugly head again.  I’m pretty sure it is weather related, as the temperature actually dipped into the 40s here.  That morning I woke up and couldn’t move.  At all.  Fuck.

It took me about 45 minutes to actually get out of bed and get moving.  I went to work.

But each day since it has been better.  Still needing some help in the morning with Sunshine, but overall much better.

I plan on resuming my workout tonight.  Hopefully I can move tomorrow.

Thank you for all the likes and follows and support.  I really appreciate it.  I know this journey isn’t over yet, but at least I’m in a better place than I was a year or even six months ago.