Sitting is a Luxury

This will just be a short update on what’s going on with me and Akathisia. (literally meaning “inability to sit”).  I found a great article explaining this complex side effect to various psychotropic drugs including antidepressants and antipsycotics.  If you’re interested: Akathisia by the RxISK Medical Team.

The turmoil I have experienced with akathisia has been unbelievable.  The need to move has been overwhelming.  I can’t express how intense this sensation has been, it was consuming every part of my life.  You can read more about my experience with this side effect in my post “I can’t be still”.

I saw my psychiatrist last week and she took away one of the new medications, but kept me on an antidepressant that often helps with akathisia.  I’m happy to say that I’m much, much better.  I feel that sitting still is such a luxury.

Finally after a more than a month the restlessness is easing.  I still feel figetty and just want to shift and move a bit, but I no longer feel the need to pace until I drop, with still the need to move.   My back is still very tense.  The muscles have been tense for over a month, they simply do not want to settle.  I’m in a quite a bit of pain because of it.  I think I may need physical therapy to help calm it down.  I’ll be seeing my primary care doctor next Friday for my 6 month visit, I’ll see what she has to say then.

How about side effects with the new medication?  After all, can an drug actually cause no side effects?  I’m not sure it’s the medication that’s causing it but I’m having a hard time with my cognitive function.  That, sounds like I’m brain dead, I promise I’m not, I’m just having a hard time thinking.  I have brain fog and I’m very easily distracted, or my short term memory is shot….I’m not sure which, after all my brain is not thinking clearly.  Hopefully this is a side effect that gets better.  If not, we may be on the search for a new antidepressant.  sigh.

I promised this would be short, I’m keeping my promise.

I’m leaving you with a few articles about Akathisia that I found useful during all of this.  I learned so much.  I’m surprised I haven’t heard of this before.

 

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Death and Living

nature-lady-color-cropped

On June 30th my father died.  Yesterday was his birthday.  I would have thought that I would be filled with sad emotions, instead I’ve been filled with a renewed lust for life.  All we know really is life and death, I’m thinking that his death made me realize just how lucky I am to be alive.  I may have a lot of hurdles to jump over every day, but I’m alive and I will thrive.

Often when you have a chronic illness life becomes so hard we don’t care to live any longer.  I know I’ve been suicidal, more often I’ve simply felt that I didn’t want to wake up.  I simply didn’t want to exist any more, it was just too hard.  Since my father’s death, I’ve realized that I’ve been wasting what life I’ve been given.  Yes, I’m sick and I can’t do a lot of things that a normal person can do, but there are a lot of things I can do, I just need to figure out my limits and live within those without wishing for things to be different.  Wishing for everything to be different makes life miserable.

Losing a parent can make you reevaluate your life.  For me it made me realize I haven’t been appreciating my life.  I realize I want to live.  I may not enjoy every moment of my life, my life may be hard, but it’s my life and I’m going to live it!

 

During this holiday season, I wish you all a life well lived.

 

**all images on Picnic With Ants created and owned by Wendy Holcombe unless otherwise noted.

Gratitudes in the middle of a mess

It’s time to take a little time to notice some of the things I’m grateful for…before I completely meltdown (again)…I know this will help!

This move has been extremely challenging, mentally and physically.  I am very grateful that I (and I am serious here) am not curled up in a corner crying and trying to hide from the world.  I’m also grateful that I am still able to get out of bed and accomplish some things.  Yes, I am in a lot of pain but, I’m still doing much more than I have in years.  I am so VERY GRATEFUL for this.  I told Stuart last night, I just can’t believe I started feeling better (no not well, but a bit better) right before all of this happened.  Wow!  If I was still like I was just a few months ago now.  This move would have been…..uh, well I just don’t want to think about it.

I’m grateful I sold almost all of my fused glass supplies.  I have only 2 things left and they should be very easy to sell!  Because of this we didn’t have to move any of that!  Yay!!!  Also, because of this I was able to buy our living room furniture.  This made me feel so good.  I was able to contribute to the household.  This is the first time I have been able to do this in YEARS!  (We had to by new living room furniture because the furniture from out old place was too big.)  This is a loan to the house though, as soon as we can pay it back that money goes in my service dog fund.)

I’m very grateful that I met the nicest lady when I sold my fused glass supplies and she actually sold my kiln for me!  How cool is that?

I’m grateful that our new place has a beautiful backyard.

I’m grateful that we live within walking distance to a grocery store and other little shops.  I hope it really is within MY walking distance.  If not now, soon.

I’m grateful there is a park nearby.

I’m grateful Stuart works very close.

I’m grateful we found a restaurant that will make meals that meet my food requirements, and it isn’t far away.  Plus, the very first time we went we got the best waitress, she is the bomb!  We’ve been there one more time and asked for her, she remembered what I needed and helped me order!  Wow!

I’m very grateful I’m still losing weight.  It feels so good to be getting in to smaller clothes and seeing a smaller face in the mirror.  I’m grateful that the diet is making me feel so much better!  What you eat really can make such a HUGE difference in how you feel!

I’m grateful I have the coolest cousin in the world living close by!  Can’t wait to see him and his brood this week!  And it’s so nice we can call on each other!  He’s real family!  If your reading this, I love you man!!!

I’m grateful things are coming together……wait, did I just say that?  do I believe it?  Am I just saying it or do I believe it?  hmmm, let me think.  (Jeopardy them playing in my head…)   I’m not sure.   One thing will happen and it looks like things are flowing along then one thing will happen and things just start going backward…but I know things will end up…the way it’s supposed to be, after all how else could it be?

And yes, I do mean that.

quotes-1523

mediawebapps.com

I’m grateful I wrote this post, because I needed it.  I needed to remind myself that things are going happen.  They are going to be the way they are, no matter what.  I keep trying to bend things the way I want them, I keep fighting to make things happen faster than they are going to, and well, I needed to remind myself…..it’s going to happen, or it’s not, and that’s OK.

Yesterday is gone, I can’t worry about what happened, tomorrow isn’t here yet can’t do anything about it.  So today I’ll do what I can, and that’s it, if something comes up and makes it so things get in the way I’m going to go with the flow and not get all out of sorts.   Just breathe.   It will get done, or it won’t, maybe it wasn’t meant to be.  I’m so very grateful I realize that.

Today’s meltdown averted…..maybe I should have written this yesterday.

 

Me and my blog…..it just is.

hearts gray scale

w. holcombe’s heART

After more thought, and feeling much love, I realized hearing the “criticisms” about my blog, and/or me, hit home because I was feeling critical about myself.  I don’t think of myself as a negative person, but I was feeling it, and didn’t even realize it.  My life has changed drastically over the last 4 or 5 years, and the one thing I felt I held on to was my ability to see the best of the situation.  I never asked “Why me?”  I said, “Why not me?”  This is very important to me.  This is a part of my very essence.   I was afraid I was losing me.

Let’s face it, the past couple of years have been very challenging for this household.  Yes, we’ve met these challenges head on, but they just kept coming…..and coming…and coming……..often the solutions have not been as easily forthcoming.

It has been wearing me down.  Much more than I realized.  Not one to dwell on things, I normally allow myself to feel the emotions that go along with a challenge then I make a plan, and deal with it.  “How do I handle this?”  “What can I do?”  “What’s the best way….????”   Unfortunately, many of the challenges I’ve had to face recently have been completely out of my control, or the resolution is not easily obtained.

  • My husband lost his job…..what can I do?  I asked myself that often.  I felt guilty that I couldn’t work.  I tried to get disability and was denied.  (yes I’m appealing, but it’s taking a long time.) Totally, out of my control.  No easy fix.
  • Sandy died.  My best friend.  My constant companion.  I felt lost.  In many ways I still do. I felt guilty.  I felt I let her down.  I know that’s not the case.  The grief has taken a lot out of me.  Out of my control.  No easy fix.
  • I’ve had added health issues.  Out of my control.  No easy fix.
  • My health issues have gotten worse.  Out of my control.  No easy fix.
  • My father was diagnosed with cancer.  Out of my control.
  • ect…ect…ect…….

Yep, I was having a hard time being me.  I’d look in the mirror and think, where are you?  I know you are in there somewhere….come out!   I was ready to hide.  After everything, I felt broken.  And I could not admit that, not even to myself.

I talked on here about my fears, my pain, everything.  I’ve been honest.  However, inside I could not wrap my head around the fact that I was really and truly scared that things would never get better.  No matter how many times I might have said it, and wanted to believe things would get better, the fact that they may not was driving me crazy.  The thought that things would not get any better…..that was just not acceptable.

Then I realized, I’m looking at this all wrong!  I’m thinking too much in the future.  I don’t know what the future may hold.  I have been freaking out over what has been happening, and I have been building up these stories in my mind about how my future might unfold.  These stories have not been great.  This is not a healthy way of thinking!   I cannot live in the future, no more than I can live in the past.  The only place I can live is in the present.  Yes, that sounds very Zen.  Yes, I’ve been reading a lot about this, but it makes sense.  If I’m constantly thinking about what tomorrow might bring, good or bad, I’m going to miss out on today.  That doesn’t mean I can’t make plans, but it does mean I’m not a slave to them and I’m not going to get all bent out of shape if something happens to change them.  It also means I’m not constantly looking back thinking, “I just want my old life back.”  that’s not going to happen, I’ve known that for a long time.  Focusing on the present gives me the opportunity to enjoy my life as it is, without disappointment about dreams that didn’t happen, or romanticizing about a past that I can’t have anymore.

In short, my outlook is changing.   Luckily, so are things around me.  Would my outlook be changing if things were continuing to be spiraling downward?  Yes, I think it would.  I think it has been, I just haven’t been writing about it here as much as I probably should have been.  It’s a work in progress, or to put it more correctly, I’m a work in progress.  I always will be.  So will this blog.

I want to share with my readers, my friends, this side of me.  It is time to share more of the side that is brave, positive, compassionate, and thankful!

Yes, I will continue to come here and speak open and honestly about everything – all of it!  I can’t help it, it’s who I am.  If you would have suggested that I close the blog, I would have turned it private and continued to write, just for me.  This stuff has to come out somewhere!  However, I want you to see how I am handling the rough patches,  how grateful I am for all the little things in my life, and how much I really do enjoy my life….”ants” and all.   But there will be times when I don’t handle things well, and you will continue to hear about that too.  It’s all part of living with chronic illnesses!

I’ve decided to challenge myself a bit.  Each week I plan to write a post called Attitude of Gratitude.  These posts will include things I’m grateful for that week.  These posts may include pictures, drawings, stories, words…..or some times it may just be one word….who knows.   I want to make sure I never let a week go by that I don’t think about things for which I’m grateful.  I try to do this every day, but we all know some days we just get a bit overwhelmed.

You are welcome to join me in this challenge.  We can make it an official challenge if people are interested.   I’m going to do it, for me, and hopefully to inspire others with chronic illnesses to look around and notice the little things that they can still be grateful for.

Thank you all for taking my Poll!  It was an overwhelming landslide that I should continue to write as I do.   I promise I will continue to write as open and honest as always.  I will continue to show the bad and the ugly sides of my illnesses, but I want to even it out and show the more positive sides too.  Yes, there really are some!

I’m so very grateful to have such wonderful friends!  (many who I have never met in person)

The comments and emails I received after my last post amazed me!  Thank you all so very much!

Sending the wrong message??

Illustration New England Boating

Illustration New England Boating

I started this blog because I needed it.

I needed to put a voice to my illnesses.  To help me get through.

I continued this blog because I felt it helped others.  It helped them to know they were not alone.  It helped to know that just because you have a chronic illness it doesn’t mean your life is over.   I thought I was sending a message that said, yes, this is all a part of me and I’m alright with that.  I have multiple chronic illnesses, some are invisible, some are not so invisible.   I work very hard not to dwell how my life has had to change because of my illnesses, I strive to focus on how happy my life is now.

I wanted to help others realize that their lives can be pretty darn great too.

Recently, it has been pointed out to me that I have failed.

Not only have I not succeeded in showing people I am satisfied with my life, I have failed in helping others realize they can be happy with their life after chronic illness hits.

This blog has never been all about the sunshine and roses part of the chronic illness world.  I do talk about every part of my life.  The good, the bad, and the very ugly parts.  I don’t hide.  I don’t want people who are ill to think they have to hide.   I’m beginning to think I may be wrong about that.  I hope not.

The past year….plus….has been extremely difficult for me.  I have had a lot of physical and mental challenges on both the home front and with my health issues.   Of course, these challenges have come across in my blog.  Every time I’ve written about a challenge, anything from my husband losing his job, to my increased vertigo attacks, I have tried to write each entry not just with pure emotion but with simple facts.  This is what is happening, this is how we are dealing with it…ect.   And I always try to end on a positive note.  After all, I really do not feel negative about everything that has happened.   Things happen to people, why should I be so different?   This is my life, illnesses and all.  Life is a gift, I’ll take mine the way it was given and I’ll make the most of it…..I’m learning how as I go.

Someone recently told me that my blog is a place I go to vent.  I agree, I do vent on here, sometimes.  I never thought that was all that I did.  I just went through ALL of my post from January 2013 until now, and I have to admit, if you just look at the surface, most of them do seem like they are simply me venting about what is going on.  Ironically, the past few months many of my posts have not been that kind of post.  I’ve had plenty to vent about, and have posted about some things that I feel were very important…things that should be “vented” about.  However, I’ve also written some pretty light-hearted posts.

I was also told recently that I can be a bit negative.  Well, not in those exact words, it was more like….people don’t want to hear negative things all the time…  I agree.   I didn’t think I was a negative person.  At least not all the time.  Recently, I have had some things to post about that needed to be talked about in a negative manner, for example, when a doctor treats you improperly.  Over all, I believe I have a more positive outlook about my life than negative.   It saddens me if that does not come across.

Today, I wrote someone in my family an email.  I hadn’t written in a while and apologized upfront, explaining that I had been having a rough month physically, but wasn’t going to talk about that and it was no excuse for not writing….then proceeded to write the email informing her of some positive things that were going on.  I soon got a reply telling me how UPBEAT I sounded, and how she hoped I felt as good as I sounded…..ect.   I was confused.  I did mention in the first sentence that my health had been bad this past month, but all she heard was the UPBEAT tone.   hmmmm.  Do I normally sound like a sourpuss?

All of this, combined with a lot of soul-searching lately has made me wonder, am I doing any good here?

Yes, I started this blog just to help me….it was a private blog in the beginning, just a journal.

However, as I learned to accept living with my illnesses I felt my blog blossom into something much more.  I felt it was touching others.  I wanted to help other people know they aren’t alone, and you can have a great life.   (Even if you have a lot of bad days.)

Let’s face it, it is easier to write when I’m having a hard time.  When I’m feeling great, I’m too busy trying to live every day the best I can!  On the bad days, I know my friends are here.

 

So I have a poll for you

 

 

Living in This Moment

drawing by w. holcombe

drawing by w. holcombe

A train of thought post.  One thought moving to the next…..

A chronic illnesses can shake your foundation, it can make you question everything…..

  • “Can I really live this life that has been handed to me?”
  • You question…..”Why, is this happening to me?”
  • You think….”I just want my life back….”
  • You create a story….”My life would be better if only….”

In the very harshest moments, the fear takes over.

What if this doesn’t get “better”?  What if it doesn’t end?  What if I’m always like this?

This has been going around my head for the past two weeks.  The symptoms are not getting better.  Are the side-effects from the medication making it even worse?   Dealing with vertigo, and dealing with the side-effects from steroids are, mind b-o-g-g-l-i-n-g.  My brain will not keep still, no matter how hard I try.  BREATHE   I keep telling myself.  JUST BREATHE   I’m jumpy, nervous, anxious, scared….and I’m so woozy, dizzy, sea-sick…..

BREATHE

IN

OUT

BREATHE

ahhhh, just a little.

NO, NO…don’t move your head.  You would think after two weeks I would know I can’t move my head.   I guess that’s an over-statement.  I can move my head, just very, very slowly.  Still, I feel as if the room moves with me.  The unsteadiness is disconcerting, and is causing the bile to rise in my throat.   BREATHE.   It is just a MOMENT.

Stay in this moment.

Do not think about the next moment.

Stay here…right here.  In the NOW.

 

I was thinking.   I’ve been thinking a lot recently, probably way too much.   I have been through a lot of medical tests, procedures…..ect….in my life.  I’ve broken bones, had major surgeries, I have dealt with pain, a lot of pain.   When I have been undergoing a test or treatment and it is very painful my medical team will often ask if it is “tolerable”?   I have only said “no”, once.   And I soon went back to that test and finished it.   The thought that it will end, makes it tolerable to me.  It will only last a moment.  I’m in that moment.  I know this will end.  I can handle anything for a moment.

Why is it different now?   The pain is not “worse”.  The vertigo is not “worse”.

It is the MOMENT.

I cannot stay in the moment.  My mind has jumped to the story….”What if this doesn’t end?”  The moment is not just a moment.  But wait!  Every moment ENDS.  Each moment is different!

Look….the moment you just read that is different from this one.  It just is.   You couldn’t predict it.  It is different from this moment and will be different from the next.

If there is one thing I’ve learned over the past few years, nothing is permanent.

Everything changes.

Each moment is a moment.

It is not the past, or the next.  it is not better or worse…it just IS.

it is the moment.  and I can handle any moment.  After all, it’s just a moment.

It is the moment I have.

I will live in this MOMENT.