Author: Wendy
I'm taking a journey learning to live a mindful and happy life, while living with Chronic Illnesses.
I'm a bit of an idealist. I want everyone to be happy and think everyone should want the same for others. I don’t understand mean people. I cry easily and laugh often. I love cartoons, Dr. Who, and my wonderful husband...not in that order!
Meniere’s and Psychological Distress
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:
With Hearing Loss Louder Isn’t Always Better
Great tips on how to help someone with a hearing loss understand you better!
I attended a fundraiser for Hearing Health Foundation a few years ago where Cyndi Lauper performed. At first, I was surprised at the choice of a rocker. Wouldn’t the music be too loud? Was that the kind of message a hearing loss organization should send? My worry was misplaced. The volume level was fun, but also safe, and Cyndi put on a great show.
I’m not sure Cyndi knew what to make of the reduced volume level though. “I don’t know why they asked me to play the music so quietly,” she said to the crowd in all seriousness, “since they can’t hear well, I thought they would ask me to play it louder!”
This statement made me laugh out loud, especially since she delivered it in her characteristic accent and style, but it has stayed with me all these years, because it is such a common misnomer — that making something louder solves…
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Mindfulness Monday – 11
“Nothing is permanent.
Everything is subject to change.
Being is always becoming.”
~ Buddha
“Be happy in the moment,
that’s enough.
Each moment is all way need,
not more.”
~ Mother Teresa
Mindfulness Monday 10
“When watching after yourself, you watch after others.
When watching after others, you watch after yourself.”
~ The Buddha
“Hatred is never appeased by hatred in this world.
By non-hatred alone is hatred appeased. This is a law eternal.”
~ The Buddha
Confessions of a Chronically Ill Deaf Woman
I have some confessions that I thought some might relate to, they can be a little embarrassing to me, but I’ve decided to tell all.
I envy people who look sick. It’s just hard to be as sick as I am and look completely normal most of the time. Others have no idea what I go through. I know on the outside I appear normal. I know it’s hard for people to understand why I can’t do things. Sometimes it’s hard for me to understand. Sometimes I feel if I looked sick it would be easier.
I’ve played the sick card. This is very hard for me to admit. There have been rare occasions when I simply haven’t wanted to do something and I’ve said I was too sick. Normally that is something that would make me sicker. Something I might want to do, but I know if I do it I’m going to pay the price afterward. So instead of trying to explain this it’s easier to just say I don’t feel well enough to go in the first place. Now I do admit there have been very rare occasions that I simply have not wanted to do something and said I wasn’t feeling well enough. I can think of one. There was an outing with Stuart’s work and I knew I’d feel uncomfortable around all of those people so I played the sick card. Stuart went and that was really all that counted, but I felt very guilty about saying I was too sick when I really wasn’t that day.
When I get mad at my husband sometimes I’ll “take my ears off”, ( I’ll, take off the processors to my cochlear implants) so I can’t hear him. Yes when I get mad I act like a child. “I can’t hear you, lalalala”. I’m sure it infuriates him. I’m acting like a child. And at the time, I don’t care.
I’m addicted to the internet and I don’t feel that is a problem. I am basically housebound. I can’t leave without someone else. I rarely go anywhere other than to the doctor or the occasional outing, that is normally just errands. I don’t have friends close by since we moved. Even before we moved I had very few that I saw on a regular basis. I keep in touch with my friends through the internet. I read, I write, I research, I email, even my TV is through the internet. Some people may think I spend way too much time on the internet, I don’t think so.
I really don’t miss working. If I’d had the dream job I’m sure I’d miss working, but truthfully I didn’t like my job. I dreaded going to work. I don’t miss it at all. I don’t like the fact that I can’t work. But missing my job? No not at all.
I care what people think. I keep being told, “who cares what people think?” Well I do. Why? I have no idea. I don’t like this part about me, but I really care about what people think. I don’t want people to think I’m lazy, that I’m pretending to be sick, that I’m a hypochondriac…. Yet I don’t like to go out looking bad. I don’t want people to think I can’t take care of myself. I don’t want people to think my husband isn’t taking care of me. I care what people think when they come in my house. (as if so many people come in my house) I care what people think when they ask me what I do and I can’t give them an answer. I don’t “do” anything. I even dress up a bit just to go to the doctor. Especially my therapist. She is a lovely woman, so put together, and I want to look all put together too. So I actually dress up a bit to go to my therapy sessions. How weird is that?
I often don’t know how to talk about anything other than health issues. My life revolves around my health, and most of my friends have chronic illnesses and their life revolves around their health issues so we don’t have a problem talking. But when I meet other people, when I need to make conversation with people outside of my chronic illness circle, I’m a bit lost.
Often I have no idea what someone just said to me, so I fake it. When there is small talk being said and I miss part of it because I just can’t hear, I nod and smile a lot and hope I’m not smiling when someone just told me something sad. It is way too hard for me to constantly ask people to repeat themselves, especially in a setting where I know I probably won’t be able to hear them anyway. Often when I’m with Stuart I just stand there and smile and let him deal with the conversation. It’s hard on me, not being able to participate, but it’s harder to struggle through it.
I love my recliner. I never thought I’d be a middle aged woman who spends most of her time in her recliner, but I do. I love this chair. I got it when I got my hip replaced, I don’t know what I did without it! I get through my vertigo attacks much easier in the recliner, I don’t have to lie all the way down, I don’t have to sit all the way up, it’s just so much easier. It’s my comfort spot, it’s where I write, read, watch TV….and that’s okay with me.
I don’t shower of bathe regularly. Taking a shower or bath is an ordeal. I have a safety issue with both. Taking a shower is harder for me because I often get vertigo when the water hits my head, even using a shower seat with a hand held shower head doesn’t solve the problem. Taking a bath is easier, but it’s much harder to get in and out of the tub. I’ve also had vertigo start with me in the tub a few times. I have to have someone with me when I shower or bathe. It takes a lot of energy out of me. I often have to lie down and rest afterward. I never thought I’d say that I’m lucky I have dry skin and hair but since I do it’s not that big of a deal if I don’t wash my hair for a couple of weeks. No, I’m not gross, I do wash up. But taking a full on bath, takes a lot.
Sometimes I’ll wear the same “clothes” for days. When I don’t feel good I wear the same clothes for days. By clothes I mean a tee and shorts or sleep pants. I will move from the bed to my recliner and back. Who needs to change clothes? Truthfully, I don’t think I could if I wanted to. But sometimes I don’t change clothes simply because it’s easier.
I’m hard to live with. I get grumpy, grouchy, moody, bitchy….but I’m also loving, happy, joyful…. Let’s just say, I’m confusing.
Are there confessions you have? Want to share? Do you share some of mine? I’d love to hear!
(photo by and of W. Holcombe. All rights reserved)
Mindfulness Monday – 9
Finish every day and be done with it.
You have done what you could.
Some blunders and absurdities, no doubt, crept in.
Forget them as soon as you can,
tomorrow is a new day;
begin it well and serenely,
with too high a spirit to be cumbered
with your old nonsense.
~ Ralph Waldo Emerson
Each morning we are born again. What we do today is what matters most.
~Buddha
All about me.
I started this blog as a journey in my life, I don’t feel that I’ve been talking much about what has been going on with me recently. I’ve decided to try to write a post every week that gives a little update about what is going on in my life. This may end rather quickly as my life is rather boring. So that’s 3 post I’m going to try to write each week. Mindfulness Mondays, An Informational Post, and All about Me. All about me is a bit of a therapeutic post.
This past week has been a bit emotional. I realized just how much I’ve been focusing my stress on a certain person. All the anger and sadness I’ve been feeling was focused on this person. I’m dealing with a lot since my father died. There’s a lot to process. Some I don’t think I really want to process, but it’s coming out if I want it to or not. I’ve been dealing with a lot of stress the past few months and all of that built up and I focused it on one certain person. I didn’t realize it. I thought everything I was thinking was true. I thought everything I was feeling was true. Some of it may be, but I don’t think most of it is. This week it all came to a head. First I told this person that everything was wrong and they just needed to go away. Then I broke down. What was happening to me? Why was I acting like that? I realized I was obsessing about this. I felt out of control and thought this was one thing I could control, but it wouldn’t make things right. Therefore things simply could not be right. What was going on in my mind? After breaking down in sobs and talking with Stuart the realization came out. It’s not that person at all. They were just a convenient scapegoat. They were in the way of my wrath. Gods forgive me, I was being a complete bitch. And I’m still crying about it. I’m trying really hard to make amends, I hope they can forgive me. I can’t honestly say that everything I was feeling was because of miss-focused stress, but I know most of it was. I don’t know if things will work out, I know I want it to, we can only try.
Other things that happened this week. I saw my psychiatric PA. I just love her. She just moved offices and now we have to drive 45 minutes to get there, unfortunately this trip took an hour because of an accident, but I’m not willing to stop seeing her and start all over trying to find someone I click with. As soon as I saw her she gave me a hug. How many psych PA’s give their clients a hug when they see them? I do like to think I’m special. 🙂 We decided that I need to increase my anti-depressant. I’ve had very good response with Latuda but I still need a bit of tweaking. I’ve just felt blah, angry, and I’m arguing much more than normal. I’m sure Stuart will be very happy if that stops.
I didn’t see my therapist this week. She’s moving. Not her office, she’s moving her home. I do look forward to seeing her again next week.
I did have PT for my neck on Monday. I’m a little frustrated there. Evidently the trigger points in my neck are getting better. I’m not nearly as tight. Yet, I left the PT session in much more pain than I was in when I got there. The pain continued to be worse for a few days. I had an appointment scheduled for Wednesday, but I canceled it. I simply didn’t feel like going. I had a migraine, I was very off balance and my neck really hurt. I didn’t feel like going through all that again on that day. I’ll go back next week.
Today we are going to go and look at cars. We really need a new car. I’m going to miss my little yellow convertible VW bug, but it isn’t practical and it is starting to need work. This was supposed to be my car. We bought it when we thought I was better. Then I got worse again. I’ve barely driven this car. It makes me sad to think about that. Getting rid of it is like getting rid of…oh I don’t know how to put it into word. I got this car when I believed I was better. I guess I’m getting rid of the last bit of that time. I lost so much when it was over.
So that’s the end of this week. I’m going to end with things I’m grateful for this week.
- I’m grateful I realized how I’ve been focusing my stress and anger on the wrong person.
- I’m grateful I have a wonderful psychiatric PA, it really helps.
- I’m grateful we are able to get a more practical car. It might bring up some sad memories, but I’m very grateful and happy we are able to get a car we need.
Thoughts on Migraine Hypersensitivity
I found a post on Hearing Health and Technology Matters that I felt would be of interest to many of you.
Thoughts on Migraine Hypersensitivity By On July 18, 2016
“As the director of a balance and vestibular clinic, I see many patients with complaints of dizziness, disorientation, and motion sensitivity related to migraine. We work closely with our neurology colleagues in managing these patients. The International Headache Society has an official classification of “vestibular migraine.”
to continue reading this article please follow this link: http://hearinghealthmatters.org/dizzinessdepot/2016/thoughts-migraine-hypersensitivity/
Stress should be a 4 letter word
Stress is widely known to cause the chronically ill to get sicker, to have flares, to generally feel worse… Stress is an ugly word that I hate to hear my doctors say. “This is being made worse because of stress.”, “You need to get your stress under control.” I can’t tell you how many times I’ve heard this.
The amount of stress I’ve been under the last few months would make the healthiest person feel bad, for someone who is chronically ill, with both physical and mental illnesses this has been a very trying time. I’m sure you are wondering, “What has been going on in Wendy’s life?” Well let me tell ya!
This may not be in order, I’m just going to get it all out. We moved, we had a friend move in with us, I was having vertigo a lot for a while, I’m constantly afraid I will have a vertigo attack, I’ve been having migraines daily for months, my father passed away, I went through all the stress building up to my father’s death, the stress of the funeral….I feel like it has been non-stop.
I’m wondering if my migraines are worse because of the stress? My chronic daily headache now has a base line of a 4-5 where it used to be 2-3, on a 0 – 10 scale. The pain in my neck and upper back due to degenerative discs has greatly increased, I’m in physical therapy for that now. (going to PT is another stress, as Stuart has to take time away from work to take me to my appointments, this time has to be made up, that’s hard on both of us; and some PT sessions seem to make things worse, that’s a stressor too.) I can’t take pain relievers which causes a certain amount of stress too because I never have any relief. My tinnitus has been very loud. Some days my balance is worse than usual. My emotional state is not well. I’ve been depressed. (yes I know I have reasons to be sad, but this is more than that). My anxiety is very high. I am extremely irritable (I’m shocked at how much Stuart and I have been arguing, and bickering, normally we rarely argue) I’m restless, yet tired, excessively worried, feeling like I’m trembling inside, very sad, my appetite is out of control, I am extremely self-conscious, I have very little self-esteem and I keep beating myself up for things I have no control over. I can’t relax; I can’t give myself a break; I’m not being kind to myself. I’m just a mess.
I’ve been having a very rough time. This is upsetting because I’m at the best place I’ve been with my vertigo than I’ve been in a couple of years. I haven’t had a bad attack in almost 2 months. This is surprising because it normally gets worse when I’m under a lot of stress. However, It is often much better during the summer. I know I would be feeling even worse if I was having vertigo as often as I normally do. But I can’t stop having profound fear that it will get worse any moment. I’m having a hard time enjoying this break because I’m so terrified I’ll have an attack at any moment.
I was trying to take better care of myself, but I have to admit in the last few weeks most of that has gone out of the window.
When we are under stress it is imperative that we practice self-care.
Things I plan to do to increase my self-care:
- Be sure to see my therapist and be open and honest during appointments.
- Give myself a break. This is more easily said than done, but I need to really make a conscious effort to do so. When I have negative thoughts or feelings I want to start being more gentle with myself.
- Meditate more.
- Take more baths.
- Watch funnier TV shows and/or movies.
- Read funny or inspirational books.
- Cuddle with my hubby.
- Cuddle with Max (the cat) and Kiki (the little dog).
- Eat healthier.
- Do as much as my health will allow that makes me happy.
- Be creative.
- Stay in touch with those who love and nurture me.
- Try to get outside more.
- Keep up a gratitude list every day.
- Laugh
- Sing Silly Songs
- Dance
- Give my body 10 minutes of mindful attention.
- Take a nap.
- Take Deep Breaths
- Get Positive Feedback (ask 3 friends what they love about me)
- Write out my thoughts (for 15 minutes free write what ever I’m feeling, I can tear it up after, just get it out.)
- Drink water (I’ve been drinking soda recently, something I haven’t done in years)
How do you take care of yourself? Any self-care suggestions? I’d love to hear them!
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