Starting to Deal with My Anxiety

I’m in the infancy of dealing with my anxiety and I thought I’d share some of the things I’m working on with my therapist. There are a number of things I’m starting to implement but the very first thing I’m to do is to understand that it’s perfectly alright for me to avoid things that cause me increased anxiety. In the future I will push myself to do things that are uncomfortable, but, right now, I’m going to just back away and take a breather from things that make me the most anxious.

Next is to make sure I’m taking care of myself, eating well, exercising when I can (something that can be a challenge for someone with chronic illnesses, but something that can help a lot I’ve found.), keeping up physical hygiene and getting enough sleep. Sleep is so important that my psychiatrist prescribed something to help for days when I simply can’t fall asleep. I used to sleep 8 – 9 hours a night without aid before the mixed mania episode now I barely make it 4 without help. I had 2 nights last week where I slept almost 7 hours without any help, that’s a great improvement, now if I can just have more nights like that.

My therapist suggested I do deep breathing exercises during times of high anxiety and have reassuring phrases prepared to tell myself.

BREATHE…IN 1 – 2 – 3 – 4….HOLD…OUT 1 – 2 – 3 – 4

IS MY BODY CALM? REPEAT AS NECESSARY

I WILL GET THROUGH THIS.

I AM GOING TO BE OKAY.

THIS WILL PASS.

I have another grounding technique that I got from a friend that I find helpful but it is a bit challenging for me, because it’s based on the 5 senses, so I do it a little differently but I think it works just as well.

You do this grounding technique by taking stock of all your 5 senses. If you can, try to say this aloud as you are processing it, if not, that’s okay too.

5 – See – What are 5 things you see around you right now? I see my computer, my water bottle, my walker, the fireplace, the rug.

4 – Touch – What are 4 things you could touch or feel right now? I can feel the water droplets on my bottle, I can feel the softness of my blanket, I can feel the ribbing on my sweater, I can feel my hair

3 – Hear – What are 3 things you can hear? (okay for me this one is different, if I can’t hear 3 things I list things that could make noise, or noises I’ve heard that I like….) Right now I hear a whistling in my tinnitus. I hear the TV is on. I can imagine there is traffic making noise outside.

2 – Smell – What are 2 things you can smell? I can smell….well not much I have a cold..hahaha…but if I didn’t I could smell my tea, I could smell my dog.

1 – Taste – What is 1 thing you can taste? I can taste my tea.

I’m doing this exercise at least once a day just to become aware of my surroundings and to make sure when I do it when I’m anxious I’ll be able to just easily fall into it and not be freaked out trying to figure out what I was supposed to do. I did that once and it freaked me out worse.

I keep a card in my purse and one in my side table at home that list this grounding technique, I admit I can never remember what comes first and then I get all anxious so it just negates the purpose. On the other side of that card I have the breathing techniques and affirmations written to remind me, because when I’m having a panic attack nothing much is really getting through this noggin’ of mine.

I’m also working on trying to be more mindful. As anyone who reads my blog knows I have focused on mindfulness for a long time, but for some reason when things started to get worse my mindfulness practice started to stray. The senses grounding technique is also a mindfulness technique that’s a good start. I’m also trying to consciously take at least 5 minutes a day to be very mindful aware…. non-judgmentally.

So that’s what I’m doing right now. As I go through this journey I’ll share more with you. I know that my hearing loss and other things in life are causing me to have a lot of anxiety at the present, but I’m not giving up. I also know that it’s not just my hearing loss. Before we moved to Tucson I was starting to really deal with my hearing loss anxiety, I was starting to get out there and push myself. I went to a couple of Christmas parties, and made some friends. I got involved in the Hearing Loss Association. I was driving again, for short distances (the traffic in Charlotte was crazy), but once we moved here my physical health took a turn, and so did my mental health, not to mention the stress of the move itself. I feel like all the strides I took are gone, but I know I can do it, I have. As a friend said to me, “We can get far going one step at a time.”

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Anxiety and Hearing Loss, my story

image by w.holcombe. all rights reserved

I’m having severe anxiety issues surrounding my hearing loss. I’ve been trying to do research on the subject and I’ve found quite a few articles that mention anxiety and hearing loss but I don’t feel that they go into enough detail. Every article I found only spoke of hearing loss and anxiety with the elderly. There are many reasons one may lose their hearing other than age. I lost my hearing quickly from an illness. The articles all speak of getting a device to for your hearing loss to relieve anxiety. I got my first cochlear implant (CI) almost as soon as I lost my hearing, my assissitive devise has not taken away my anxiety. I do not know if my anxiety would be higher if I did not have my CI’s and lived in a completely silent world all the time or not, I never have. But I can tell you that my anxiety has risen significantly since I lost my hearing.

At first I didn’t realize I had anxiety due to my hearing loss. I knew I had anxiety due to the sudden attacks of vertigo so I simply attributed much of it to that. I can say that both have been a big part of my life for years now, but at this time in my life, I’m not as concerned about the vertigo. Not because I don’t have it, but because I deal with it much better. I’m not so freaked out by an attack, I can deal with it if it happens and I rarely have attacks as severe as the attacks I used to have on a regular basis. I’ve come to realize that the majority of my anxiety now stems from my hearing loss.

Many people believe that with my CI’s I can now hear normally, that is far from the truth. It also confuses people because I can hear fairly well in a quiet place, I can also hear certain people much better than others (it depends on the frequency of the person’s voice) this makes it hard for people to understand why I can’t hear under every circumstance. However it is very hard for me to hear when there are 2 or more people talking, or when a person has an accent or someone has facial hair or doesn’t move their mouth much, or puts their hands in front of their mouth…. I simply cannot understand speech in a lot of situations. Most of the time I am completely lost in a noisy environment. How am I supposed to socialize?

I often just smile and nod, or I chime in at an inappropriate time and get embarrassed afterward. Sometimes I talk too much, after all if I’m talking then no one else can so I’m not missing anything. There’s a problem there too, often people will chime in and I’m lost again, and I seem very rude. So normally I look at Stuart for cues and ask occasionally if there is something I need to know. It’s not a pleasant experience and it is very anxiety provoking. Imagine sitting at a table where everyone is talking and you have no idea what is being said. You simply eat your meal and wait until it’s time to leave. Since moving to Tucson there have been numerous times that we have gone out to eat with the family that includes between 7 and 9 people. We’ve been to extremely noisy restaurants and we’ve been to quiet restaurants, it makes a huge difference. Unfortunately, they seem to only want to go to the noisy places so I normally bow out of those outings.

When we had them to our home I did have the children sit at a different place than the adults which reduced the noise but our dining room does not have carpet so it echoes, that makes hearing harder. However, one person kind of dominated the conversation so I kept up pretty well, I did miss some and Stuart caught me up on that later, which I thought “when did that happen” but since I was in my home it was not as bad. But my anxiety leading up to that dinner brought on a full blown panic attack. I will not go through that again. I’m not sure dinner with the whole family together is worth it to me.

There are many other things that cause me anxiety around my hearing loss:

  • sleeping alone in the house – I can’t hear the smoke alarm or anything else.
  • being in a store I can’t hear when anyone is around me
  • I can’t hear when someone calls my name
  • I can’t hear when someone comes up behind me
  • I often can’t hear if someone knocks on the door.
  • I can’t hear emergency vehicles.
  • I can’t hear the GPS
  • I meet someone and tell them I’m deaf and they begin to use ASL
  • ….

I realized recently that my anxiety over driving is not totally the action of driving itself, although living in a new town and not being able to hear the GPS is pretty bad, it is also the anxiety of what happens when I get there.

The last time I drove I went to Whole Foods. a whole 1 mile from my home, I got there and was fine, I went to get a basket and found a phone in my basket. I knew I had to take it in and find someone to turn it in to. Anxiety started. I found someone as soon as I walked in the door as she was returning glasses do someone who had left them at a register, we exchanged pleasantries and I walked away not really knowing what she said but I knew it was nice and hoped I had responded appropriately. As I walked the aisles looking for my groceries I was acutely aware of the people around me but still one person came up behind me, and another came around a corner and I did not hear either before the were right on me. When I got to the register I had to tell her I had profound hearing loss and had to see her lips, she went on to say how wonderful it was that I could read lips and I have no idea what else she said, I paid for my groceries and left. When I walked outside I was still shaken but the day was beautiful and I saw a lady I saw when I went in who was eating her lunch and I decided I wanted to put myself out there for just a bit (my therapist would be proud) she was reading a real book and I commented how nice it was to see that, she said how much she loved real books and I went on my way. I only spoke to her because it was quiet out and I was sure I would know her response, and I did. At least I’m pretty sure I did. However, when I got in my car I realized I was shaking. I felt the car vibrating like it was running but I hadn’t started it. I looked around to see if big truck had gone by, but the only thing I could attribute it to was me.

When reading over the articles about anxiety and hearing loss the suggestions they give to help include getting a hearing assistive device like a hearing aid, give the device a change, see a therapist, ask family and friends to help what you need to hear easier, get a hearing dog, get involved in a hearing loss association…

So out of those suggestions, I have a device that I’ve had for nearly 6 years, I give them a chance every day. I have not shied away from situations. (Although a I have started to). I have a therapist. Stuart helps me, I’ve asked others to understand and help but most do not even attempt to help, I’m considering a hearing dog, but I need to make sure we can take on the added responsibility of caring for another dog, I have been involved in a hearing loss association in the past and I’ve looked into it here in Tucson but my anxiety simply hasn’t allowed me to do it yet. (If it’s like the last association I’m not sure I’ll feel like I belong)

Studies, sited below, have shown that hearing loss is related to anxiety, depression, social isolation, and demetia.

We need to work with those with hearing loss to help them integrate with main stream society better so they do not feel so left out. We need to help them understand they are just as viable and cared for as they were before their hearing loss.

Ryan, Cynthia. Link Between Untreated Hearing Loss & Mental Health. Vestibular Disorders Association. Sept. 13, 2014. https://vestibular.org/news/09-13-2012/link-between-untreated-hearing-loss-mental-health

DeWane, Caludia. Hearing Loss in Older Adults-Its Effect on Mental Health. Social Work Today. July, 2010. http://www.socialworktoday.com/archive/071510p18.shtml

Alzheimer’s Association. What is Dementia? Oct. 1, 2014. http://www.alz.org/what-is-dementia.asp

Boyles, Salynn. Hearing Loss Linked to Mental Decline in Elderly. WebMD Health News. Jan. 22, 2013. http://www.webmd.com/healthy-aging/news/20130118/hearing-loss-mental-decline

Thankful – Week 7

I’m taking part in the Ten Things of Thankful challenge. Simply list 10 things a week that you are thankful for, but no worries if you list less, or a bit more, the point is to get everyone to notice there is something to be thankful for. If you’d like to join in, just pop on over to TToT and add your post to the list, I hope to see you there.

Image from NatureHills.com

This week I’m thankful for:

  • family who care. My sister texted out of the blue because she had a “funny feeling” and wanted to make sure every thing was alright. Then a couple of days later her husband was worried because of the weather out our way. (El Nino is dumping a lot of rain on the desert) I’ve never known him to worry about me before. I hate for people to worry, but I will say, I sure feel loved.
  • friends who listen. I can only hope I listen as well as some of my friends listen to me. (I know I need to work on this more actually) I’m so very grateful I have such good friends. I may not have many friends, but the few I have are the best you could hope to have.
  • massages. Hubby got us massages for Valentine’s Day. Actually he just got us massages, it just happened to be on Valentine’s Day, but it was pure joy. I went in with a migraine at about a 6 and left with it closer to a 2…amazing. I just wish it could have lasted into the next day. But I’ll take a few hours at a 2.
  • getting my house clean. Stuart and I working together to clean the house. It wasn’t bad, but my back has been hurting so I haven’t been able to do a lot so things like vacuuming and mopping went undone. That has all changed, the house is clean and I’m a happy girl.
  • a local friend came for a visit. It was a nice day when a local friend came and spent a few hours with me, we just talked and had sandwiches. What a nice break from spending so much time alone.
  • a new pillow. I’ve been in need of a new pillow for quite some time. I finally bought one this week. I hope it was a good investment. It has a 100 night money back guarantee, so I felt good buying it. No risk!
  • library books. I haven’t been able to focus enough to really read a whole book in a while now and I’ve really missed it. Recently we got our library cards in our new town. I decided to check out their online selection so I could read on my Kindle. There are a ton of books available to check out on Overdrive, I’m thrilled. I decided to check out a couple of Young Adult books to get me back in the swing of things, thinking I could concentrate on them, and I was right! I’m so thankful I’m reading purely for pleasure again!
  • successful dinner. We’ve been trying to have the family together for a dinner since Christmas but something has come up every time we scheduled and we’ve had to postpone. (mostly me feeling ill, I hate that) We were finally able to get everyone together this weekend. Everything went smoothly despite my fears that everything would fall apart any moment, nothing disastrous happened, everyone was fed and I think all had a good time. (Anxiety is real in this girl lately, I’m thankful I did not let it ruin this dinner for me.)
  • citrus trees. It’s citrus season ya’ll! Everywhere I go I see citrus trees filled with fruit! There are local Meyer Lemons in the stores. I so want a citrus tree in my yard, as soon as we buy a house I will have a lemon tree, even it I have to start with a baby one. I adore lemons. yummm. I hope there is a mature citrus tree already there. 🙂
  • the taken for granted things. I’m so thankful for running potable water, electricity, food a plenty, a home, and love in my life. These are things I’m most thankful for each and every day and I never want to forget that. Most of us take these things for granted, yet there are so many who do not have these basic necessities. If you have a little extra won’t you consider giving a little to those in need. Remember there are many ways to give.

What are you thankful for this week?

“No one has ever become poor by giving.” – Anne Frank

Mindfulness Monday: mindful miscellanea

“Turn your demons into art, your shadow into a friend, your fear into fuel, your failures into teachers, your weaknesses into reasons to keep fighting. Don’t waste your pain. Recycle your heart.”

Andrea Balt

Delving for Mindfulness Monday quotes is very therapeutic. I find new mantras, viewpoints, concepts and challenging thoughts to ponder. I have several “file folders” on my computer stuffed with “left-overs;” quotes that didn’t appear in the final draft of a post.

The new year: a time to declutter; to re-heat frozen left-overs from holiday feasts; to continue the spirit of giving and sharing.

To welcome a new mindfulness year, I’ve dipped into my cache of quotes. I hope you find one that resonates with you. 

“Happiness never decreases by being shared.”

[Anon]

 “If you get tired, learn to rest, not quit.”

[Anon]

“Start somewhere.”

[Anon]

 “Wonder is a bulky emotion. When you let if fill your heart and mind, there isn’t room for anxiety, distress, or anything else.”

Diane Ackerman

“Worry is a misuse of your imagination.”

Curiano

 “Into the forest I go to lose my mind and find my soul.

[John Muir]

“A friend is someone who knows the song in your heart, and can sing it back to you when you have forgotten the words.”

[FQL] 

“Good friends help you to find important things when you have lost them . . . your smile, your hope, your courage.”

Doe Zantamata

I wish you a mindful, whimsical, playful, meaningful, exceptional, educational, experiential and hug-filled 2019.

Please remember:

“When it rains, look for rainbows. When it’s dark, look for stars.”

Stacey Colegrove.

 “Forgive me my nonsense, as I also forgive the nonsense of those that think they talk sense.”

Robert Frost

Images: © Lorraine

Canceling Christmas and that’s okay.

Today we are officially canceling Christmas dinner. We were supposed to be hosting dinner for the family at our house this Saturday night, but plans needed to be changed because of my health. It was hard for me to admit it at first, but finally I realized, even if, by some miracle, I could get it all done, I would not be well enough to enjoy it. The probability that I’d end up in bed during the whole thing was high. So, as I prepared to have a “talk” about cancelling Christmas with Stuart, he proceeded to tell me that he felt we needed to do so. So glad we are a team.

For years now we’ve worked at making Christmas our own. We stepped back from the hustle and bustle and spent time together doing our special things. This year, we are in much closer proximity to his family and I really wanted to do something special for his dad, so Christmas dinner was planned. Then I got sicker and sicker with a UTI and more, and suddenly this Christmas started to feel like an albatross around my neck. I desperately wanted it, but my health simply did not agree, and I’ve come to understand that it’s perfectly okay to cancel plans when you need to. If anyone is disappointed or upset because of this change of plans, then I’m not sure I’d want them at my house anyway. (We are going to try to do the dinner on the 29th, but if I can’t, I can’t. Playing that one by ear.)

I feel like this whole experience has made me get back to my mindfulness practice, and Buddhist studies (I consider myself Buddhist inspired). Letting go of the plans for Christmas, not focusing on what may be with my health, just living life moment to moment as best I can, that is where I like to be, I feel like I lost that somewhere along the way.

Mala Beads.

For the past year I’ve had this bracelet that helps you meditate, it is based on Mala beads, but on a much smaller scale. Mine has 21 beads, where a true Mala has 108. Mala beads are used to count mantras when meditating, I think if it kind of like a Rosary. I have used mine at times when I have a few moments to meditate, I simply hold a bead between my fingers and take a deep breath in and out and then move on to the next bead. Sometimes I’ll focus on counting, or a single word or phrase. It has helped me with anxiety and being centered. I realized just how much I had gotten away from my mindfulness practice when I stopped using my beads. Recently I had a mammogram and I had to take my jewelry off, I had almost everything off already, Stuart was holding it for me, but I had my beads on. I had to take them off, so I put them with my clothes. When I got home I realized I didn’t have my beads. They are very inexpensive and don’t look like much, so no one would have saved it. I was devastated. I had just started using it again and it was helping me through this tough time, and suddenly it was gone. I ordered a new one, but it was different. It didn’t feel right. This week Stuart surprised me with a new one just like my old one. I will be using it often now, I’m so very glad I found this way of simply letting the world go for a little bit. I often get anxious when meditating because I can’t tell how much time has passed, by counting my beads, I have a know that completing one round is a good amount of time, I used to be afraid I’d look at the clock and only a minute had passed, this is a perfect solution.

Another tool I’ve used for a long time that I’m using more often now is chanting. This is not for everyone, some find it much more religiously centered. I don’t really. I do try to practice the Buddha’s teachings, but I don’t feel I really know enough to call myself a Buddhist. I try not to talk about religion on my blog, I respect one and all. I feel we all have the same basic beliefs, we want to be happy and want the same for others. In other words, do good and good comes back to you. I think you should do good no matter what, but again, I’m getting off subject. (and at this time in I’m not sure how many people agree with any of that)

About the chanting. I learned a chant when I was taking yoga, many moons ago, and it stuck with me. Whenever I have a bad spell Stuart and I will chant this chant.

Oṃ bhūr bhuvaḥ svaḥ

tát savitúr váreṇyaṃ

bhárgo devásya dhīmahi

dhíyo yó naḥ pracodáyāt

Translation:

 (O) Supreme one; (who is) the physical, astral (and) causal worlds (himself).

 (you are) the source of all, deserving all worship

 (O) radiant, divine one; (we) meditate (upon you)

Propel our Intellect (towards liberation or freedom)

I can’t really remember how to pronounce the last two stanzas, but we know the first two by heart and I find them very comforting when I’m in a lot a pain, or having vertigo so very bad. It doesn’t really matter to me what the meaning is, it’s the chant itself that helps. When in pain I chant this and sway back and forth, it honestly helps. Since I had the akathesia side effects last Spring I rock myself to sleep. I simply cannot be still. Since I’ve been so sick, I find myself repeating this mantra every night. That or the Lord’s prayer, which is kind of funny to me.

The next 2 paragraphs are all about my current health condition, feel free to skip it, but if you are interested, here goes:

As many of you will know from my previous post, I’ve been fighting a UTI since late November. I’ve been through 3 rounds of antibiotics and I had another infection from a cyst removal on my scalp that still hasn’t healed. (that procedure was done the third week of November, over a month now). You may also recall that I’ve been going through a Bipolar mixed stated mania phase, and had to change my medication a couple of times. Yesterday I saw the doctor again. I was running a fever, but not incredibly high. My pulse and BP were a little high, nothing worrisome. I have been having severe stomach pain with retching (very little vomiting, just heaving horribly) and the nausea has been so severe, I just can’t express that feeling. My bladder and back still hurt. She also checked my wound and it is still draining, but it’s yellow now. ewww. She’s a little concerned about the possibility of sepsis, since I have infections in 2 places that haven’t healed, but I don’t have that high of a temperature and I should be either vomiting or having diarrhea, and I’m having neither. I’m had my blood drawn just in case. I also had a urninalisis, so far it shows that my UTI is clearing, but I have blood in my urine, so I go to have a kidney/bladder ultrasound tomorrow morning. (At 11:30 in the morning, after no food or drink for 8 hours then drinking at least 32 oz of water before the test without peeing. Talk about torture.)

She thinks this has all probably been caused by adding too many medications at one time and they didn’t play nice together. Stopping the antibiotics will hopefully set it straight. Of course, that wouldn’t explain the blood in my urine, but why worry, it is what it is.

*the first image was created using imgflip.com the second image comes from https://chopra.com/articles/the-benefits-and-uses-of-mala-beads I believe each are open source photos.

mini update…it’s all about me

20180902_140241It’s Labor Day, for most it’s a time to a honor the workers of America, and send the summer off with a bang.  For me, Labor Day this year marks my 14th wedding anniversary.  I can honestly say, I’d marry this may again in a minute!  It sure doesn’t feel like our wedding was 14 years ago, yet, it feels like we’ve known each other forever.

We had planned to go on a day trip to just get away, but things haven’t quite turned out as we’d planned; maybe we’ll make it there soon.  Instead we went to the botanical gardens here in town, it was like walking into a secret garden, I really needed to get out and commune with nature.  I’m so glad we Stuart talked me into going.

(I’m actually starting to get sleepy, but I really wanted to post this now, so I haven’t read over this, please excuse any and all errors, if something doesn’t make sense, let me know.)

sleep: After reading the comments left of my post about my lack of sleep and extreme fatigue, I have tried a few things and I think I may have discovered a couple of things that may have been contributing to it.

  • One – allergies.  It was suggested that this might be the case so I checked looked up what might be causing that, and found out that ragweed is causing MODERATE pollen counts.  I’m very allergic to ragweed, so I increased my antihistamines and have been doing a saline spray.  I wish I could use a Neti Pot but it causes vertigo.
  • Two – mood swings.  Someone mentioned that when she is feeling the way I have been that she knows she is a bit manic.  Well that sent up bells and whistles.  I realized just how quick to anger I have been lately.  I’ve been cutting myself off from people.  I am trying to make an effort, but it has just been so hard.  I’m simply having a hard time putting forth the effort.  I’m sorry I’ve been neglecting my people.  I’m also having uncontrollable crying spells.  Today (I’m wring this on Sunday night) I just couldn’t stop my eyes from leaking.  It annoyed the hell out of me.  So, have I been a bit hypomanic, that would cause the anger and the lack of sleep, but it doesn’t explain the tears.  Could I been depressed?  Is it possible to be experiencing both at the same time?  After being diagnosed with bipolar I over 22 years ago, you’d think I could figure this out, but I must admit my moods have not been as stable this past year as they have been for many, many years.  I’m not having full blown mania or severe depression, but I’m having a very hard time coping.  I’m also having a very hard time holding my tongue, and unfortunately I have been hiding how I’ve been feeling from almost everyone (I do share these things with Stuart, we are in this together) including someone who is causing me some severe anxiety.  I’d really like to cut this person out of my life, but it’s just not possible, at least not right now.  I’m trying hard to just let it go, and be gentle with myself.  I understand that I’m really getting upset because this person is not behaving as I expect people to, it is these expectations that I have to let go of.  But the drama is affecting other people in my life and that is causing me more anxiety.  I’m sure most of that makes no sense, but it felt good to get it out, even if it is a little cryptic.
  • Gabapentin – I’ve been taking 100 mg of gabapentin 3 times a day for a while now, and it hasn’t really bothered me.  I take 200 mg at bed time and 100 mg upon waking.  If I don’t take this my arm goes to sleep and aches, my back hurts more and my aches and pains are more intense.  Since moving here I’ve needed to refill my prescription a couple of time and I noticed that the manufacturer is differnt than the one who supplied my pharmacy in NC.  I can’t help but wonder if that changed things.  so for the past couple of days I haven’t been taking my morning dose and honestly I haven’t been nearly as sleepy during the day. That’s unfortunate because my pain has increased quite a bit.
  • Stress and anxiety.  We’ve talked about this before, but I have spent a number of hours awake lately when I simply could not shut my brain off.

What I discovered was not an issue.  My use of medical marijuana.  For the most part I’ve been using mostly CBD during the day. You can read recent studies on sleep and CBD on NCBI  To make sure the CBD was not causing my insomnia and/or my daytime fatigue I decided to stop taking it for a while.  After 2 weeks I saw no difference with my sleep, but did notice an increase in my headaches and anxiety.  I haven’t been using any cannabis with THC duing the daytime.  I have still been taking it right before I go to bed, it does help me sleep for about 4 hours at least.  (note I’ve been using marijuana to help me sleep for a couple of years now)

Increase in physical symptoms: I’ve been much better for a while now…my vertigo has been almost non-existent at least 9 months now.  This past week, it has been worse again.  I haven’t been having full rotational spins for the most part, but I have been seeing things move and I feel like I’m moving.  I’ve had a few spells this week that caused Stuart to come home early to help me.  I haven’t thrown up from vertigo in quite some time.  Even before I stopped having vertigo on a regular basis, I had stopped vomiting.  I normally use a little cannabis to stop the nausea and vomiting, but I was trying hard this week to not do that, I wanted to make sure it wasn’t causing me to lose sleep.  Well, it wasn’t and I will be using it to help with the vomiting the next time I have vertigo.  My migraines have also increased, and I don’t feel like the gammaCore is doing much.  That makes me sad.  To be completely honest, I’m having a very hard time staying in the present and not freaking out over the thought that I might get back like I was.  I’m already afraid to drive again.  Shoot.

House search: We still haven’t come close to finding a house that is suitable, there just aren’t very many houses that have the features we want/need.  Now we’ve found a little snafu on our credit report that we need to clear up.  It’s sad when someone has a credit score of over 800 and the ability to put down a down payment of over 20%, and we are having trouble getting pre-approved.  There’s something wrong with that picture.  We are hoping we can get it straight soon.  If not we’ll just rent for a while. I’m trying hard not to stress over it.

Eating:  I still feel like food is controlling my life.  I recently had a week where I wasn’t starving all the time and I was able to stay in my calorie range.  I’m terrified of gaining all that weight back, yet I can’t seem to stop eating, and that is simply tearing me up inside.  I did find a cool app called Mealime and it has been a great help in planning meals that are pretty easy and healthy too.  Now if I could just control the snaking, especially in the middle of the night.  How did I go from having to force myself to eat, to overeating?

Doctors: It has been a challenge finding doctors here.  Most of the doctors I found on the BCBS site who said they were accepting new patients actually weren’t.  I do like the PCP that I found, except for a couple of things, I’m hoping those things will resolve themselves after we get to know each other better.  (like she isn’t comfortable prescribing my Valium for the vertigo.  I don’t take if often, but if I’m having vertigo that is the only thing that helps calm it down.  I do not take it as an anxiety medication, nor do I over use it.  My last prescription of 90 pills lasted me almost a year!  She doesn’t seem to understand that it is the best vestibular suppressant out there.  I will have to find an ENT.  I want to see a neurotolgist here in town, but he only sees patients that have been refereed by an ENT.  So I have to find one of them first.  Argh, what a pain!  I am hoping he can treat both my Meniere’s an my migraines though, so I really hope I can get in there to at least talk to him and see if he can offer any help at all.  I do like my neurologist now, well what I learned in my first visit to see him anyway, but I do not like how hard he is to get in touch with, nor do I feel like his staff is very helpful.  Recently I had a seizure, my first in a very long time, the next day he called my neuro and left a message about it.  No one ever called back.  I had a seizure and NO ONE CALLED BACK?!?   The doctor who operated on my wrist was not as thorough as I felt he should have been.  Every time he was in the exam room with me I felt he was always on his way out the door.  I didn’t feel like he answered all my questions and I didn’t feel like I had clear enough discharge instructions.  He also didn’t even talk with Stuart after my surgery.  Talking to me right after I wake up is not a good time to expect me to retain information.  They did send me a survey to fill out and I spoke up about my feelings, I’m proud of myself for that. I was told by the resident who took my stitches out that I could have pain from the healing for a year. wow!  Didn’t expect that one.

That’s all for now….I guess that was a bit longer than a “mini update”  perhaps I should have called it a “maxi update”  🙂

*photo taken by W. Holcombe at Tucson Botanical Gardens, Tucson, AZ – all rights reserved.  Please do not copy without permission.

 

Some things are hard to talk about. Pocrescophobia

I’ve been struggling with something for a while and I’m not actually sure I feel comfortable talking about it, but there may be someone else out there struggling with the same thing who needs to know they aren’t alone.   I have an intense fear of gaining weight.

*****this post talks about eating disorders, this may be a trigger for some of you, please take care of yourself and read (or not) accordingly*********

As many of you may know, I lost 45 pounds in 2017.  This is something I have been trying to do for a long time.  I gained a lot of weight when I first got sick, on top of losing my independence, suddenly my body no longer felt like mine.  I weighed 225 pounds at my heaviest, and I didn’t recognize myself.  (I’m barely 5’5″ tall)  A few years ago I found out that I have Fructose Malabsorption and went on the appropriate diet to help with that, and at that time I lost 45 pounds, and kept it off.  However, I was not happy with my weight.  I was still overweight and it ate at my self esteem.  I tried and tried to lose weight over the last few years, but it just didn’t come off.  I had my yearly physical last year on December 30th, and at that time I weighed 182 pounds.  I was determined to lose weight, but I really wasn’t sure I could do it, and I was ashamed that I hadn’t been able to do it before.  Then I was put on a medication for my migraines that reduced my appetite.  Suddenly I was able eat much less and not feel hungry.  (Normally I feel hungry often.)  I lost weight, it came off slowly, but it steadily came off.  By the time I had my yearly physical last month I weighed 140 pounds.  (140 lbs at the doctor’s office, at home I weighed 135lbs)  The medication stopped curbing my appetite, now I’m fighting hard not to gain all that weight back.  I was able to bake for the holidays this year for the first time in many years, but I didn’t just bake, I ate, and I have been terrified that I’m going to gain….and gain…and gain, yet I can’t seem to stop eating.  I’ve gained about 5 pounds.  I know how quickly those 5 pounds could turn into 80+ pounds, and I’m desperate to not let that happen.  So many people will say that 5 pounds is nothing when you gain weight, they tell you not to worry about it, it’s really not that much, but those same people will tell you how great it is when you lose 5 pounds, how that’s a lot of weight to loose….  How can both of these be true?

When I lost the weight this year I found myself in love with my body for the first time since I can remember, if I ever felt that way at all.  I accepted that this body was not as I wished it would be.  Let’s face it, a 54 year old’s skin doesn’t really shrink back when you lose weight, but I was happy with what I saw, I loved all of me, saggy skin, cellulite, and all.  However, even though I felt that way, I was still terrified of gaining the weight back.  At one point, I went to the grocery store and started to buy some gluten free flat bread to make a pizza with, when I saw the amount of calories it had per serving I broke down in tears.  I was paralyzed with fear.  I simply stood there and cried.

Now, I see myself as fat.  I can see that I’ve lost weight, but I also see where I’ve gained some, and how much more I need to lose.  (10 pounds seems to be as hard to lose as 50)  I see photos of me and I think I look pretty good, then I look in the mirror and know that isn’t true; it takes a lot of effort to look good for the photos, on a day to day basis, I don’t look like that.  I look down at my body when I’m sitting in the living room and I’m appalled by the rolls of fat on my stomach, the bulges I feel under my arms, (back fat is not attractive), and the drooping of my breast.

I feel better since I’ve lost the weight.  I can get up from the floor easily.  I can walk further than before.  I go out with more confidence (most days).  I love wearing smaller sizes.  I think I look good…..sometimes.  Other times…well I covered that haven’t I?

I’m scared.  I’m terrified of gaining weight.  This is an intense fear, yet I can’t seem to stop eating.  I’m hungry all the time.  I’ve had a love/hate relationship with food for a very long time, my whole life really, I don’t want to go into detail about my past, but I need to let you know this isn’t the first time I’ve struggled.  Now it is even more confusing.  My weight seems to always be in a state of flux.  Since I was able to keep most of the 45 pounds I lost, I was encouraged that I would be able to this time, I’m afraid that isn’t the case.  I’m afraid I will need to track every thing I eat to make sure I don’t over eat or under eat.  I’m afraid I’ll need to exercise as much as possible in order to keep the weight off, but that is physically impossible because of my health, and I hate myself because of it.  I’m afraid I’ll fail and the weight will come back.

I’ve been trying hard to not eat as much, and to eat nutritionally dense foods; this hasn’t happened, instead I’ve been going overboard on sweets and cereal, and I beat myself up over it.  The guilt and fear is so great that I have tried many times to make myself throw up. (I can put my finger all the way down my throat and not throw up.)  If I could just get it out when I eat too much, I know I would feel better, I would be back in control.  No, it wouldn’t take away the guilt (I’m sure it would cause more guilt), but the fear is stronger than the guilt.  I’ve exercised to the point of absolute exhaustion (not regularly).  I have taken laxatives when I feel I’ve over eaten (not often, but I have).  I suffer from chronic constipation and get obsessed with how much that makes me weigh (how much extra weight is in me), laxatives help.  I try hard not to have them in the house, so I won’t abuse them.  I’ve actually been happy when I’ve had intestinal distress, because it’s a sure way to lose weight.  I’ve wanted surgery to make me look better.  These actions and thoughts scare me.

I will work on these things.  I may go back into therapy, but first I am going to try to deal with it on my own.  As many of you know I can’t drive because of the sudden attacks of vertigo I have, this makes it very difficult to get to therapy sessions.  Stuart has to juggle his work schedule to drive me places so we try to keep my appointments to one a week, two at the most; if I have therapy every week how can I go to any other appointments?  I just want to handle this by myself if possible.

I don’t think I have a full fledged eating disorder, yet.  I do not avoid meals.  I eat when I’m hungry, even if I feel I shouldn’t be hungry.  I have not been tracking every calorie I put in my mouth. However, I do plan to, to make sure I’m not over or under eating, and I will admit, to loose a few pounds.  I’m not avoiding foods, I do plan to cut sugar out of my diet for a while, but that’s not a bad thing, right?).  I normally do not eat so much that others would find it unusual. (however, I feel it is)  I do not purge, but I do admit, sometimes I would if I could.  I have a lot of fears and I can see that my actions have been changing because of these fears.

I have Pocrescophobia (the fear of gaining weight); I know this fear could lead to serious health issues, I know it is causing extreme anxiety for me, and I know it is hurting the people who care about me.  I will get a handle on it, if I can’t do it alone, I will start seeing a therapist and talk to my doctor.  (I promise)  Right now, I’m simply trying to be open and honest about this.  I’m asking you to not judge, or worry about me, I simply ask you to be witness to my fear and support me while I deal with this.

I do wonder how many people who have a chronic illness struggle with these feelings.

For further information, or help, I’ve listed a few organizations that deal with eating disorders:

 

Panxiety

Today I’d like to introduce Lorraine of My Frilly Freudian Slip.  Lorraine is a good friend of mine and the author of beautiful poetry and prose.  You will find her writings at myfrillyfreudianslip.wordpress.com.

Lorraine is fighting Bipolar I and severe anxiety.  They can’t find medications that work for her.  Following you will read a first hand account of what it is like to live with “Panxiety”.

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photo by Lorraine of My Frilly Freudian Slip

“Pounding heart. Constricted throat. Knotted stomach. Dread washes over me. A panxiety attack.

Coming, unbidden, from some where inside my mind; spilling into my consciousness and flooding my body with anxiousness.

Breathe in through nose to count of ten, fill lungs, feel belly lift. Hold. Breath out slowly to ten.

Drift – visualize place of calm. Walking on beach, tide tickling toes. Finding beach treasures: sea glass, sand dollar. Smell sea tang. Feel breeze against skin.

But the panxiety is stronger – can’t focus; can’t concentrate. Pace. Half finished tasks lay scattered around the house – stopped in mid-flow. Forgotten. Pace.

Distract. Words on page, coloured pencil on paper. But, hands and mind shake.”

Daily, I deal with panxiety – a panicky anxiety attack – lasting minutes or hours. Sometimes the dread follows, flows all day. Few solutions to the foreboding; apprehension. Becomes so hard to concentrate that writing, my usual distraction from mental and physical pain, is almost impossible. I lose words; sentences fly off into the ether.

There are times I can force myself to lay still. To tell myself one of my “head stories.” Perhaps to drift off to sleep for awhile. This doesn’t mean I stay under long, nor that I wake calm. But when I can “nap,” my emotional and physical self gets a break from the relentless panxiety.

I have to confess turning to medication more than meditation when the attacks are furious and frequent. Always haunted by anxiety, these spells have increased in number and severity. Linked to a series of traumas, mental collapse and going untreated for several years afterwards.

I am on the bipolar 2 spectrum with chronic depression, rapid cycling, and bouts of hypo-mania manifesting in over indulgence and obsession. My bipolar isn’t responding well to medication; I am mostly teetering on the edge of instability, often falling all the way in.

Depression is my background music. Even when the volume is turned up, I can become agitated and anxious. As my depression can not be treated with anti-depressants (they don’t work), it is hard to level my mood. These swings are often accompanied by panxiety.

My anxiety has never been fully addressed. The medication I am given is not in a sufficient dose to stop the attack completely. And, I take nothing that addresses it on a daily, 24 hours basis. I seek to gain control of these attacks by other means than Ativan or Klonopin. However, often panxiety, like depression, wins. Doesn’t mean I stop fighting – I just have to do battle harder and stronger the next time.

Seeing a therapist has given me an outlet; a safe space to talk about how I feel. A person who helps me explore my mental health issues including honouring and acknowledging the traumas underlying the escalation in my panxiety attacks. Therapy can be the life-line that grounds me while I do battle. A reprieve to polish my armour.

Lorraine  myfrillyfreudianslip.wordpress.com

Mindfulness Monday – Anxiety

Bike

“If you want to conquer the anxiety of life,
live in the moment,
live in the breath.”

~Amit Ray

 

“Between stimulus and response there is a space.
In that space is our power to choose our response.
In our response lies our growth and our freedom.”

~ Victor Frankl

 

Note:  Severe anxiety takes a lot more than a couple of quotes to make it better.  These are just thoughts one can try to keep in mind.

All artwork on Picnic With Ants are created by Wendy Holcombe unless otherwise noted.

 

 

Meniere’s and Psychological Distress

wendy hair

When I was first diagnosed with bilateral Ménière’s disease by my doctor at Duke he told me two things that will always stick with me, “Ménière’s is one of the worst disease you can have that won’t kill you.” and its “a disease of random punishment.”  He compared Ménière’s attacks to living in a war zone, you know that you will be under fire at some point you just don’t know when.

Having a disease that makes you feel as if you could be attacked at any moment causes a lot of psychological distress.  A study conducted by Dr Kirby and Professor Yardley at the University of South Hampton found that those with Ménière’s Disease have a much higher incidence of post traumatic stress syndrome (PTSD), health anxiety and intolerance of uncertainty to distress than non-sufferers.

Nearly one in eight people with Ménière’s were found to meet the criteria for full PTSD, compared to the general population where just one in sixty has PTSD. The high levels found in Ménière’s sufferers are comparable with those found among people who have suffered a stroke, heart attack or heart surgery.

I’ve been diagnosed with PTSD.  I’ve known this for a while but it has never been as apparent as it has been the past month.  For the past month I’ve had very little vertigo.  The vertigo I have had has been minor and only lasted for a very short period of time.  Most days I’ve been vertigo free, but I haven’t been able to enjoy these days.  I am constantly expecting an attack at any moment.  I’m on edge, jumpy, irritable, anxious, argumentative….  I try so hard to enjoy the good days I have and put the bad days in the past, but that doesn’t seem to be working recently.  I have been taking advantage of this good spell a little but I’m on guard all the time, waiting for the ax to fall.  Waiting for that next vertigo attack.  Sometimes I deal with this much better than other times.  Right now, I’m a nervous wreck.

I found a test on line that ask many of the same questions my doctor asked me to get my diagnosis.  If you feel you might have PTSD you might want to take this test and then take your findings to your doctor to discuss it.  PTSD Test

additional reading and helpful sites: