It’s challenging

I have no idea where to start this post.

I guess I’ll start first by apologizing for having to have Lorraine do Mindfulness Monday for me again this week (thank you Lorraine, you awesome) I have been feeling like a fraud.  I have been talking about mindfulness for a few years now and I simply haven’t been able to live the life.  My life seems out of control right now and I haven’t been able to accept that this is the way it will be and be okay with it.  My meditation practice has never been as regular as I’d like, but lately it has been non existent.  Why is it when I need this the most, I have been unable to simply let that shit go.

Living  in close proximity to family has been more stressful than I thought it would be.  We haven’t been able to help my father-in-law as much as we thought we would.  He simply wants to keep doing as much as he can in addition to caring for his wife, so he has some semblance of normalcy.  We do try to see him at least once a week, but that doesn’t seem like enough to me, and we haven’t been seeing as much of M as I thought we would.  She has no idea who we are and I’m afraid that is making her a little frustrated.  I’m not sure about that though.  She is very pleasant to be with, she talks and talks, I just wish I could hear her better.  Now that I’ve been more symptomatic, it’s hard to do much to help anyway.

My hearing loss has been much more of a challenge here than I thought it would be.  Not only do I have trouble hearing M, I can barely understand anything my niece and nephew say, and my new psychiatrist…well, let’s just say, I won’t be going there without Stuart with me to help translate.  She is very soft spoken and has an accent so she enunciates her words differently, it makes it extremely hard to read her lips.  I wish I knew sign language so I could request an interpreter.  I could request CART, but that’s really hard to set up, so it could make it very hard for me to get an appointment when needed.  I also don’t understand my headache doctor, he also has an accent, he talks fast, and really has no idea how to talk with someone who has profound hearing loss.  That kind of amazes me.  This city has a large elderly population, that means there are more people here who have late onset hearing loss, doctors should know how to communicate with us.  Oh who am I kidding, many doctors don’t know how to communicate with anyone, hearing or not.

The vertigo has gotten worse.  Ironic thing, I just received a letter saying my Medicare benefits are being reviewed, right after that my vertigo started going crazy!  When I finally got Medicare my symptoms started getting better, not immediately, gradually, but it was better.  Was it the extreme stress of feeling like a burden, and the fear that if something happened to Stuart I wouldn’t have insurance or any income, causing my vertigo to be worse?  I have no idea, all I know is that I’m having vertigo again, often, and I’m really upset about it.  I’m even using my walker again, not every day, but I’m definitely getting use out of it again.  I think buying a car was tempting fate, the last time I got a car I got worse….you can see how my mind is just spiraling.  I’m so tired.

To top it all off, I’ve been dealing with some of the worst rage episodes I’ve had in a long time.  I started taking estrogen about 2 weeks ago for menopausal symptoms, I’m thinking that could be it, but since I have Bipolar Disorder it always concerns me.  I do have a call into the doctor, let’s hope we can figure this out before I kill someone.

Speaking of my mental health, my psychiatrist had gene testing done to help determine which drugs are best for me.  The results are very interesting.  I want to share a lot of that with you, but this post is getting long, so I’ll save that for another day.  If you’d like to read more about the test I had, it’s called Genesight, here’s the link to their site.   https://genesight.com/

My back has started seizing again, the muscle spasms stop me from doing a lot of the things I’d like to.  Like baking!

But I was able to do a little celebrating for Halloween (after a complete meltdown on Halloween day, the night turned out pretty good.)

Here’s a few photos of my makeup, one from a festival we went to on Friday and the other for Halloween night to give out treats.  Halloween night wasn’t very inventive, it was the end of a very long and emotional day, so my makeup was not what I had planned.

 

I hope your Halloween was a hauntingly good time.

I’ve been having a hard time writing lately, I may be writing more journal type post, I think I need to get more of this stuff out.

 

 

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It’s just so hard sometimes…

This is a stream of thought post.  I just needed to talk and get some things out.  So no fixing of grammar or anything.  One thing I do want to say before you read this…..I’m not suicidal.

photo by w holcome

photo by w holcome

Is everything just so hard right now or is it the life through steroids?

I feel like I’m slipping away.  I don’t know who I am half the time.  I’m really not handling things all that well….yet in the next moment I am….then I’m not…then I am…then I’m completely melting down and that has been the last two days, and

I just feel like a weight is on me that I cannot lift and it is crushing me,grinding me down further into the ground past the point of breath….I’m buried alive….why, why cannot I still just not die.

Oh I am so ashamed to feel this way.  I am just so tired.  So tired of feeling the ups, the downs, the hope, the devastation when life kicks me in the gut over and over.  And I can’t believe I’m actually writing these feelings out here where everyone can read them.

I do not feel like this.  I don’t.  This is not how I handle things any more.  It has to be the steroids messing with me…it has to be….

But then…there has been so much loss lately…so much stress…and I found out yesterday that it is worse than I thought.

When you can’t hear very well…..let’s face it, I can’t hear at all without my cochlear implants on and working, and for a while now things haven’t been sounding right.  So conversations with my husband have not been as communicative as they normally are.  I have always been so proud of how our relationship has been so good, because we communicate so well.  When you can’t talk a lot, communication seems to fail.  He thinks I hear things I don’t.  I think I hear things he said differently.  And things simply do not get talked about.  I’ve been feeling like we just talking much about stuff….and when we do, things just don’t get anywhere, we just get a bit frustrated because I don’t understand things….well…I really didn’t understand something, and I got really upset about it yesterday.  I lost it, completely broke down, and I’m still spinning about it.

I thought our finances were doing ok.  Not great of course.  Tight.  We do have a mortgage and rent and everything.  But I thought we were ok, not in the negative ever month, being able to pay our bills…paying off credit cards….ect.  We aren’t.  We are still in trouble.  I’ve been spending money recently.  I’ve told Stuart when I was going to, or asked him….he didn’t say…”we really shouldn’t be spending”.  No I haven’t gone crazy, but I’ve spent when I didn’t need to.  We bought Christmas for our niece and nephew that could have cost half what it did.  He said, “It’s what we would normally spend.”  This makes no sense to me.  I’m so distraught.  He said….that in about a year we should turn the house over to the bank.  What?  and we can spend money on gifts???  I can buy things for me?  NO.   I knew we were in real trouble when Kiki started having diarrhea Friday night and Stuart said, “Oh Kiki please don’t get sick, we can’t afford it.”   What?  We discussed this before we got a dog.  If we couldn’t afford a pet, we should not have gotten one.  In my opinion, that is one of the worst things a person can do, and I know Stuart feels the same.  (I know we would have found a way if Kiki would have needed to go to the veterinarian, but that comment really scared me.)  We are in this situation because of me.  We have not been able to sell the rest of the stuff out of the house, or get the house on the market because of me.  No, the house may not have sold yet, but we are nowhere near even getting it ready.  All because of me.  I have gotten too sick for him to leave me alone to go to Durham and take care of things.

Now, how can I not feel guilt about being sick??  How can I not feel guilty for every doctor appointment I have?  How can I not feel bad about every extra thing we have to spend because of my illnesses?  How can I not feel bad about the trip we have to take to Duke….tomorrow?

We were talking about taking me to special clinics to look for more answers…..HOW could I even think of this???  I cannot allow my husband to lose everything for me.  I cannot allow him to work so hard at his life and never be able to own another home, never be able to retire, never be able to do anything but take care of me!  NO!  I will die first.   Please, please, let me die first.  I simply cannot live with this guilt or with this lack of quality of life.  How do you choose?  How do you choose?  Am I selfish and allow him to sacrifice everything for me, to help me…where it may end up there is no help, that I will end up just like this forever.  Or do I stop it.  and say enough.  I accept that life will be like this.

I have ups.  We’ve seen this, over and over.  I have some good times.  I had them not long ago.  I went for over 4 months feeling so much better.  Then I have times like this.  Will I be like this forever, or will I have the good times again.  Who knows.  I cannot predict the future, and I have to stop making up the worst case scenario in my mind.

We have to get more stable financially before I can allow him to sacrifice any more.  He does so much.  He is so exhausted so much of the time.  He doesn’t even see that it is because of me.  At least he loves his job now.  It is not draining him.  He really enjoys it.  I don’t worry about him so much there, but am I jeopardizing it?   I hope not.  Right now that is all I can do.  I have to trust that his boss really is as understanding as he says he is.  I have to believe.  I know his hours are flexible….I hope they are as flexible as they are making them.  He does a lot for me.  They work around my appointments.  Sometimes he leaves in a moments notice when I have an attack.  He always gets in the hours, he gets his work done….he says that is all his boss is concerned about.  But I am concerned.  I do not want him to risk this job over me.  (they did just put him in charge of a project, so they must believe in him, right?)

I have to be more involved in the finances and everything as often as I can.  I have been hiding.  I have not been able to handle the stress of it.  I do not deal with instability.

I’m not dealing well with not being able to do anything.  With not being able to help at all.

I’m simply not dealing well.

I do so wish we had some help.  I wish someone would give us a maid for a day as a Christmas present.  Or better yet, a maid service.  We used to have one, got a great deal on Groupon, had a maid come in just once a month, and it was perfect.  For this tiny place, I’m sure it wouldn’t cost much….well for some.   But it would get the deep stuff done.  Things that just don’t get done…..oh who am I kidding, a lot doesn’t get done lately.   (I think that’s why Kiki got sick, she found something on the floor, I swear she’ll eat anything she finds!)

I’m tired.  So tired.  Between the spinning head and the aching back, sleep is hard.  And now my brain will not shut off….I worry.

Please Please tell me I will be able to deal with this better again after I get off of these dang drugs!   But then will the awful vertigo get worse again?  I live like that either.

Why does it have to be so hard????