I can’t be still…….

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Today is the first day I’ve had any relief from the restlessness caused by my medications.  In my post about my side effects I mentioned that my antidepressant caused me to have restlessness and my doctor put me on something else to counteract the side effects.  I thought it was going to work at first, but it didn’t.  She changed the medication to a new one that should have helped with the side effects, instead it made it worse.  And my hair started falling out!  (not in clumps but my brush has to be cleaned at least twice a day)

The restlessness has been severe.  On Thursday I was at my therapist office pacing, and sobbing as I couldn’t be still and my muscles have been so fatigued they just can’t keep going.  I’m amazed I haven’t lost a ton of weight. (I have lost some, just not a lot compared to how much I’ve been moving)  I’ve been moving constantly.  and I do mean c-o-n-s-t-a-n-t-l-y!  I don’t feel like I can portray just how horrible this is.  I feel like my muscles in my back are tightening up all by themselves.  My back HURTS.  I just need to move.  It is very hard for me to sit here and type this post because I really NEED to be up and moving.  And yes, this is a better day.

My therapist talked with my psychiatrist while I was in the office.  She was concerned I might be going manic.  I’m not.  I do feel a little like it, the motion, the antsy feeling….but it’s different than this.  This is different.  It is in no way good.  When mania first starts with me, it feels good.  (unfortunately, that’s why people shy away from treatment so often, it can feel good, but things change)  I think my psychiatrist finally understood just how bad it was.  I don’t think the messages she was receiving portrayed the situation correctly.  Poor Stuart was calling her office a LOT.

After she talked with my therapist she changed up my medications.  Possibly because I said I wanted to be off anything that MAY cause restlessness.  Just start over.   Yes, I’m risking my sanity by switching antidepressants, but I’m doing well and I’m very aware of what I’m doing so if I start getting depressed I’ll know what is causing it.  That is the first step in dealing with it for me.  I know it will stop.

I wrote the previous part of this post yesterday (Saturday), today I’m not doing well at all.  I don’t know why I felt somewhat better yesterday, today is hard.  I wish I knew exactly what I have.  The name it is called.  She mentioned kinesia, but that encompasses so much.   From what I’ve read it sounds like I have Akathisia (A feeling of muscle quivering, restlessness and inability to sit still, sometimes a side effect of antipsychotic or  antidepressant medication – Mayo Clinic)   I’ve  been reading that some of this can become permanent.  “Please do not let this last forever.  Please don’t let it last much longer.”  I really feel like I just can’t deal with it much longer.  This is the stuff a nervous breakdown is made of.  My mental health drugs have caused extreme physical changes, this hasn’t been helping my mental state of mind, but I’m not manic or majorly depressed at this moment.  yes, I’m a little depressed, but who wouldn’t be under these circumstances?

Unfortunately, today is a bad motion day.  I do have moments where I feel somewhat normal, but that is normally when I’m really concentrating on something else.   I just want to get up and move.  But moving really doesn’t help the feeling get better.  I just NEED to do it.  I’ve never had a feeling like this and it is very hard to explain, I hope I’ve made it understandable.

I’m confident that things will get better, but I must admit I have the fear in the back of my mind that it won’t get better.  Then I try to bring myself back to the present and deal with it one moment at a time.   I CAN DO THIS!

 

*all artwork on Picnic with Ants created by Wendy Holcombe unless otherwise noted.  Please do not use this image without permission.

Better. Functional Medicine and a Visit from a Friend.

On April the 18th I saw a Functional Medicine practitioner.  It was interesting.

She asked me a lot of questions, a thorough medical history, a short exam….it was a long visit.  But tell me, why do providers send you the information to fill out before you get there if they aren’t going to look at it until you are sitting in the office.  I feel like that’s a waste of time.  Me just sitting there while they read the information they’ve had for days.  Of course, I don’t feel they should do a lot of work when I’m not there, they don’t get paid extra, but being prepared would be nicet.

We talked quite a while.  She thinks I have an autoimmune disease, just like other doctors do, they think they just don’t have a test for it.  I don’t really see what difference it makes to know if I have an autoimmune disease or not.  There isn’t a one stop treatment for those diseases.  Mostly I see doctors giving those with autoimmune steroids.  Something I can’t take.

She wants me to get some blood tests done.  One for allergies, one for genetics, and one for….oh golly, I don’t remember what the other one was for.  My insurance doesn’t pay for any of this.  It’s expensive.  I haven’t gotten them done yet.  I was waiting on my insurance to see if they pay for anything, and now I’m waiting on my ride.  It’s a little difficult when you depend on someone else to drive you places, and that person works full time.  Stuart doesn’t mind taking me, but his time is limited.  We’ll get there.

We talked about my migraines, she is hoping to find a trigger with the tests.  She suggested Magnesium Threonate (see the image above, I got mine from Amazon)and turmeric for the pain.  I started them within a couple of days and boy has it made a difference.  I’ve had days without migraines.  That’s HUGE!  I have that base line headache all the time, it’s been there most of my life, but the migraine on top of that has left me for a few days at a time.  I’m shocked at how much this has helped me.  Shocked!  Why hadn’t my migraine specialists suggested this in the past.  It really bothers me that I may have been helped years ago, if only someone would have suggested the right form of magnesium.  Heck, I never had a doctor suggest magnesium at all.  I started taking it because I read about it.  But I didn’t know there were different kinds and I couldn’t tolerate the kind I was taking.  I’m just so grateful for the relief.

I’ll go back to the functional medicine practitioner after I get the blood tests done.

me and kym

This week a very good friend of mine came for a visit.  It was so nice to see her.  She lives on the opposite side of the country from me, our visits are rare, and precious.  It was so nice to have a real friend come and spend time with us.

Kym and I went shopping.  I went out without Stuart for the first time in over 5 years.  It was liberating, but it was also a little scary.  However, Kym is one of the most level headed people I know and I knew she would not freak out if something happened.  She did something so right.  At one point I felt I needed to go home and I said so, she just said, “Okay, let’s go.”  She didn’t freak out and ask me countless times if I was okay.  She trusted me to tell her if things were getting  bad.  I admit though that I may have pushed it further but I was a little scared and tired.  It was a very good shopping trip.  No I didn’t go crazy with the spending, but I did find a couple of cute things that fit.  (I’ve lost a lot of weight recently, so I need clothes that actually fit me now.  Kym is a good person to shop with.

Vertigo has been kind to me recently.  I’ve had very little spinning, and when I do it is just a slight spin, nothing to worry about.  I did fall last week, and hurt my back a little, but really it’s nothing to be concerned about.  If things go as well as they have been I won’t have anything to write about.  LOL

Are you a Mary or a Debbie?

Today I’m happy to introduce a new friend, Kim, from her blog, I Tripped Over a Stone.  She is an amazing writer; I am so pleased she decided to write a little post for us.  Please jump over to her blog and check her out, you’ll be so glad you did.  

Hello my name is Kim. Wendy asked me to scoot over here from my blog and do a guest post for her. I happily accepted. You see, I consider Wendy a friend. We are similar in many ways, besides having invisible illnesses, we have the same kind of humor. I have no doubt we will one day meet in person.

I have Fibromyalgia Syndrome, Wendy has Meniere’s Disease. These are classified as invisible illnesses and both are chronic conditions. Neither is really a great one to have. Would you want want vertigo, inner issues and migraines or would you pick constant pain, difficulty sleeping and cognitive difficulties? Choose. Yes, choose right now! Fibromyalgia Syndrome or Meniere’s Disease?

Now that you have picked your illness, how would you handle this new, life altering, invisible illness? Would YOUR life be over? The answer is yes. Your life, as you know it, will be over. You will have to say goodbye to the old you and hello to this new person who feels like crap most of the time and is a shell of who you worked so hard to become. You will probably lose your job, most of your friends, and some of your family members. Since your illness is invisible, you will be deemed unreliable even though its your health that’s unreliable, not you. You will be scoffed at for being on any form of assistance and called a liar because you do not look sick. Welcome to your new life.
Now you get to choose again! Are you going to be a Debbie Downer or a  Little Miss Mary Sunshine? People usually pick one or the other. Debbie and her self-defeating behavior; why try when nothing will change, there is nothing left for me in this life, I am of no use. Now Little Miss Mary Sunshine knows everything and it is making a brand new life, finding the right doctors, support groups, and will forge ahead! These are the personas we sometimes show others. In reality, we are sick and tired of being sick and tired. We just want the pain, the vertigo, the migraine…to end. A cure would be great! Until then, we take our medication. Sometimes we will go to extremes and have surgical procedures, with no guarantee of a positive outcome. And we read everything; news of every new pill, treatment, therapy, hoping we will stumble upon our way out of this illness. So who is the persona you show to the outside world, Debbie or Mary?

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Ok, you can be yourself again. I am am not very found of Debbie or Mary but in a pinch I will become one or the other. I’m never quite certain who I will pick, it depends on the circumstance. It was not fair of me to expect you  to choose either. But life is not always fair!

In closing, Wendy and I will continue on our individual health journeys with a little help from each other and you! Being able to tell our stories and allow people to see us is quite terrifying at times. But somehow our paths have led us to this place and we are so very glad it did. We have been given a gift! A place to share our lives and the ability to meet such wonderful and endearing readers of our posts.

I thank you, Wendy. I enjoyed being your guest today.

kim-post-2~Kim

Visit me at I Tripped Over a Stone.  itrippedoverastone.com

Mindfulness Monday – Change

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photo by S. Holcombe, rights reserved.

“If you change the way you look at things,
the things you look at change.”

~Wayne Dyer

 

“The only way to make sense out of change
is to plunge into it,
more with it,
and join the dance.”

~Alan Watts

A visit to the Migraine Doctor

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ocular migraine, by w. holcombe

You may recall from my last visit to the migraine doc  (a neurologist who specializes in headaches) that she’s tried just about everything and suggested that I look into studies.  Well, she hasn’t given up.

I saw her last week and it was a long visit.  I am always impressed when I go there that she never seems to be in a hurry.  I never feel like she is rushed to get to the next patient.  It’s amazing really, this is a doctor who is backed up over 3 months for an appointment, you know she’s busy.  During our visit, I was having slow vertigo, which made it difficult for me to follow everything she was saying.  I’m still asking Stuart some things, unfortunately he doesn’t seem to have much of a memory.  He must have been worried about me.  I did understand most of the visit, there are just little things I remember her saying that I wish I remembered.  Like she said that Melatonin was good for something other than sleep, but we can’t remember what…….well I just looked it up and it can help with a bunch of things, including migraines.  Who knew?  I don’t know if that’s what she said, but I’ll keep taking it.  It helps fall asleep anyway.

She is concerned that some of my migraines may be caused because my CSF (Cerebrospinal Fluid) is too high again.  I have fluctuating CSF, it tends to run high.  The migraine medications that I’m on help keep it lowered.  She felt that we need to put me on a drug that will increase this effect.  So I was taken off Topamax and put on Diamox.  I’ve been on Diamox  before, my CSF pressure did not remain stable on it either, we’ll see what happens this time.

She did look in my eyes, it was difficult because I had a bit of nystagmus going on at the time so my eyes were jumping, but she saw that it was bulging a little bit back there, a sure sign that my pressure is up.

The weird things is, if I have high CSF I should have a worse headache when I lie down.  Sometimes I have a bad headache when I wake up but often I don’t.  When I have a bad headache, it doesn’t get better when I lie down.  hmmmm.  Makes me wonder.  But then there’s the eye thing, she did say it was a slight bulge.  Well I’m just not convinced and I don’t want this drug to make my pressure go too low.  It’s a very strong diuretic.  I’m peeing a lot, but my body will get used to it I’m sure.  I’m a little more light headed, but that could just be me, but it could be the drug.   I feel very confused, this one has bothered me a lot, but it says it will go away shortly.  If it doesn’t I won’t be on this drug long.  I do not like being so forgetful.   I was angry at Stuart yesterday and couldn’t remember why!!  I don’t get angry at him often, you’d think I’d remember why I was mad at him.  I think this drug is making me grumpy, or maybe that’s just me.  I also think it’s reducing my appetite, as least that would be a good thing.

To sum up, I’m on a new drug (or back on an old drug).  I’m not sure about it.  I’m keeping an open mind though.  I’m keeping a journal of my headaches as always, I’m adding in other side effects I’m feeling and paying close attention to all.  I go back to the migraine doc in 2 months.

I can only say: Chronic migraines and New Daily Persistent Headaches suck.

#MyMightyMonth – A day in my life

I just got an email from The Mighty, they are starting challenges to promote self-care.  The first 30-day challenge is to journal.  I thought, what better way to keep me posting and keep my creative juices flowing?  I may not post every day, this is not that kind of challenge, I do not feel pressured to post every day, it’s just a challenge to get you started journaling, but I plan on posting often during the month of January.  Most of these won’t be my normal post, these are going to be journal entries.  You will be able to step in my life for a month and see what Wendy is up to.  You may get very, very bored, but you may find out a few things about me that you never knew.  You may also find out how I deal with some of my trials, or how I don’t deal with them.  You might find out just how long it takes me to do things.  Some days, you might find out that I don’t do much of anything.  I think all of this will be good, for me, and hopefully for you and this blog.  I have a lot of new followers who don’t know a lot about me, this is a great opportunity for them to find out all about ME.  🙂

It’s not quite January yet, but I thought I’d write about my day today, it was much more eventful than my normal day.

We had planned to go to Ikea today to get hubby a desk, he is in dire need of one.  I’m very tired of seeing his computer on the dining room table.  Unfortunately, when he looked at his coupon he found it expired and he didn’t want to spend that much money right now.  Truthfully, I’m not sure he’s completely decided that’s the desk he wants.

I have to admit this put my entire day off game.  I was really looking forward to going out to Ikea and walking around that big store and getting some exercise.  It’s always a bit of a scare doing something like that, but after being closed up in the house so much, it is a thrill for me to be able to do anything out of the house.  Even if I might pay for it later.  Needless to say, I was upset, so we decided we needed to go somewhere.  We decided to go to the mall.  I have a gift certificate, what better time to use it?   Well today was the day that everyone decided to use their gift certificates, or take presents back, or shop after Christmas sales, or something, because there were NO parking places at the mall.   I couldn’t see fighting all the people, and me with my walker, no way.

We decided to go by the library.  I had a book on hold and thought we’d pick it up.  We were waiting because I have another book coming from another library, but it was something to do!  It made me happy, and Stuart found 2 books, that made him happy too!

After the library, I admitted I still had some energy and wanted to walk.  We discussed going to the park, then I asked if we would be driving close to Michaels, because I knew hubby needed glue for models.  We were driving right by there so we decided to check and see if maybe we could get in there.  It was great, there’s a handicapped space on the side and 3 were open!  Bam! right by the door.  We were in.  And it really wasn’t that crowded once we were inside.  We decided to just browse.   I’ve been looking for something I can do with my hands.  I used to like doing cross stitch when I was younger, but what do you do with that kind of stuff when you are finished with it?  I have a lot of paintings that I have no where to put now.  Anyone want a painting?  So, I’ve been thinking about crochet, but I’m not very good at it, I just can’t keep my tension correct.  I have this Knifty Knitter thing that is pretty cool.  It’s a tool you use to knit with.  You aren’t really knitting in the traditional sense, but it looks neat when you are finished.  I decided to work on that again and bought some yarn.  Unfortunately, when I got home I found the yarn is too thin, I’ll have to get thicker yarn for this to look right.  After that I’ll be making things left and right.  hahaha   Working with yarn is good for tactile sensations and fine motor skills.

 

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by w. holcombe

I also got a book called Zendoodle.  I love this kind of drawing. (please I don’t want a debate about Zentangles here)  So far, I’ve doodled just a little, but I know I’m going to be doodling more.  I used to do this a lot, it’s very calming, and it is good for my spacial relations.

I took Valium today when we left as a precaution to try to prevent me from having vertigo.  I’ve been having it a lot recently.  When we got home today, I started playing with the yarn, and shortly thereafter, the vertigo started.  I didn’t get much done today after that.  It wasn’t a violent bout of vertigo, but it was certainly not slow.   I felt sick, but luckily I didn’t throw up.

The vertigo has been starting and stopping over and over for the rest of the evening.

That was my day today.  Hubby took the week off work.  I think this is a dumb time to take off work, but I didn’t think about that when he asked me about thinking this week off.  There are just way too many other people off work doing things, there’s too much traffic, too many people.  You can’t do anything.  And we couldn’t take a trip.  Heck, who wants to take a trip around Christmas, unless you are visiting family, it’s too crowded.

I’d rather stay home and enjoy the last days of my Christmas tree.

Tomorrow I’ll pay for today a bit.  I’ll need to take it slow because I did so much, but I wouldn’t change a thing.  I had fun, and that’s important.  Oh, tomorrow I have my yearly physical, so much for totally resting.

If you’d like to take The Mighty’s 30-Day Challenge go to their Facebook page and check it out. 

Mudita – finding joy in the joy of others

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“Mudita is a word from Sanskrit and Pali that has no counterpart in English. It means sympathetic or unselfish joy, or joy in the good fortune of others.” (1)

I bring up Mudita now because those of us who are sick often find it very hard not being able to participate in celebrations this time of year.  We feel we are stuck on the outside just looking in, and as we look in we are envious.  We can’t feel joy.  Mudita is the opposite of envy.  When we feel mudita we feel joy in the joy of others.  We are genuinely happy that others are having a good time, even though we can’t join them.

This feeling doesn’t happen over night.  It’s hard to overcome those feelings of envy.  We don’t want to feel this way, but we have to admit, that’s the way we often feel when things come up and we can’t join in the fun.  We don’t feel joy in the fun the others are having, we feel sadness and anger that we can’t join them.

I first read about mudita when I read How To Be Sick by Toni Bernhard.  At the time my husband was playing games with a group of friends and I used to be envious that he had this group and I didn’t have anything like it.  He’d call me from there and I’d get this knot in my stomach and feel horrible because of this envy.  Then one day I realized how much he needed this time, how much he loved this activity and how much my envy hurt him.  (even though I thought I hid it well)  I remembered what I learned from reading Toni’s book.  I remembered mudita.  It didn’t happen overnight, but in time I started feeling joy when hubby would call from his game and sound excited about how things were going.  At first I faked it.  I knew I should feel joy for him so when I talked to him I put on a smile and told myself how happy I was for him and how much joy this made me feel.  Did I feel this at first.  No.  But after a while when he called I was truly happy.  I felt joy hearing how the night was going.  I was no longer faking it.

When trying to practice mudita start small.  Start with someone you don’t know.  When you see someone win a competition feel joy in their joy.  Then when you give a gift, feel the joy the receiver feels (that’s an easy one, I think).  Take it one step at a time and you will be surprised at how much joy you can feel when others feel joy.

It may not happen this holiday season, but perhaps when you can’t participate in the next celebration you might be able to find mudita, and feel joy in the joy of others.

I recommend all of Toni Bernhard’s books:  How to be Sick, How to Live Well with Chronic Pain and Illness, How to Wake Up.  If you are chronically ill and haven’t read it yet, be sure to read How to be Sick.  I’ve read it over and over and keep going back to it.  It helps me live the day.  It makes me feel like I can get through this and thrive.

For further reading on Mudita, of course you can check out Toni’s books, but also check out.