I read this post that was shared on the Meniere’s Resources page on Facebook and it really struck me how much I fake being well enough to do things, and I’m sure you all do too. So many people think we fake being sick; if they only understood that we fake being well just to be around them, especially this time of year.
It has been a very long day and I thought about not writing today, but the main reason I decided to post these journal entries here instead of writing them in a personal journal was to keep me accountable and keep me motivated, so here goes it.
My 3 day migraine broke about 10pm last night, so I was able to sleep well until 5am when I woke feeling a bit off and went to the bathroom when suddenly vertigo hit and so did the pain in my head. I had a vestibular migraine, with migraine associated vertigo. I’m not sure how long the vertigo lasted. I took my medication, and used medical marijuana to stop the vomiting and waited it out until I could go back to sleep. Stuart stayed with me and then worked from home to make sure I was okay. When I got up at 10am I no longer felt the effects of the vertigo, but the migraine was more intense. I ate breakfast hoping it would improve before my 1pm appointment, but by noon I decided I needed to take something. It took the edge off just enough that I was able to get through my appointment.
Now, about that appointment! I’ve been in physical therapy for my back and it simply hasn’t been helping so I decided to try something else. Someone recommended a woman who is a physical therapist who teaches therapeutic yoga. I’m working one on one with her. The first visit was very interesting. She showed me lots of photos of how muscles work together and we talked about how if certain muscles in one part of the body are not strong then other parts of the body will suffer. My hips and pelvic area are weak. She said that often when those muscles are weak it will cause pain in the back, especially when standing for a while, like mine does. She gave me some very simple exercises to focus on over the next couple of weeks then I go back in. I don’t know if this will help my back or not, but I know my whole pelvic area needs to be stronger so I’m going to work really hard on this. I’m really proud of myself for going to this appointment after waking with vertigo this morning, often that would cause me to be too afraid to do anything for the rest of the day. I was more off balance than normal, but I was determined, and since Stuart was able to take me I felt safe.
After that appointment we went and picked up my new glasses. I got new glasses a couple of weeks ago, but they made the lenses wrong. They had the focal point in the wrong spot so my progressives were not working at all. Now they are all fixed and I can see the computer. I’m not positive I like these new frames, it will take me a while to get used to them. They are SO different from my old ones. I went from dark bold statement frames to clear light weight frames. What a difference. I would post a picture, but I’m in bed. lol
We then went to Walgreens to pick up some prescriptions of mine and get some things straight they have messed up and I had a bit of a melt down. They really have messed up a few of my prescriptions, calling doctors for refills who I don’t see anymore, filling things I don’t need, prescriptions not showing up on line so I can manage them….So I had a list of things that needed to be
discussed fixed, but I couldn’t hear anything in there so Stuart had to do the talking. I was trying so hard to follow what was being said, and he would ask me something and I’d try to answer and then I felt like he just dismissed me and half the things on my list were not addressed and it was just a mess. I ended up in tears and went to sit in the car. There has to be a better way for me to communicate the things I need.
I looked back at the situation and when we walked up there it was so noisy I got so overwhelmed told Stuart that I couldn’t hear so he would need to handle it for me. Right there, I gave up my control in the situation, but then I got upset when I felt like he “dismissed” me. When I started to feel like things were not being handled the way I wanted them to be, I should have spoken up and said something. Even though I couldn’t hear well enough, I should have made them slow down and help me understand, even it that meant they had to write it down. This is my healthcare, I need to be more assertive and stop being so afraid.
There’s something else I need to also look at with this situation though, I had a migraine. The pain had increased to a 7, it was harder to concentrate and focus, my vision was slightly blurred from the florescent lights and the right side of my face was tingling. I honestly don’t know if I would have spoken up if I had been migraine free, but I do think I need understand that migraine changes how you deal with life, and I need to give myself a break sometimes.
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.”
Most of us have seen the videos of a someone who has been deaf their whole life who receives a cochlear implant and can suddenly hear. (or maybe people just send those to me) The wonder on the their face is very touching and can be described as miraculous. I will not get into the debate over whether or not a child, a person who has been deaf since birth, or a person who has lost their hearing should be implanted, that is a very personal decision that I have no right to weigh in on.
I do want to talk about how not everyone with a cochlear implant hears the same. Recently I read an article that talked about having a cochlear implant, the person writing the article has been deaf his whole life, does not have a cochlear implant, and has chosen not to get one, I respect that decision. Many of the commentors did not. The comments on that article were argumentative and down right rude. I found it very interesting, and a bit disturbing, that so many people assume that the experience they have with their cochlear implant is the same experience everyone would have. That simply is not true.
Yes, it is a miraculous thing to suddenly be able to hear. (for some for the first time, for others to hear again, like me.) The thing is, we have no idea what those people are hearing. It could be words, or it could be clicks and whistles or a combination of many sounds. If you never heard a sound before, would your face not show amazement? We cannot judge what they are hearing by a simple video. My audiologist told me that they she cannot understand what I hear, because she doesn’t have a cochlear implant and if she did, it could be totally different. Some people who only hear little bits might be able to hear more later, some will not. I met a lady at the Hearing Loss Association meeting who has cochlear implants and she can hear very little. She cannot hear speech. Her cochlear implants allow her to hear emergency signals, and not much else. I am amazed at how well she gets by with reading lips, but she does get lost, and I do wonder how much she misses. Often she simply smiles and nods, something I find myself doing way too often. But she is very grateful for the hearing she has. I can’t imagine. There are some people who hear almost as well as a normal hearing person, I can’t imagine that one either.
So many people assume that cochlear implants are like hearing aids, They are not! Hearing aids amplify sound, but the person can still hear the way they are supposed to, just not as well. In other words, no one had to implant something in their head to help them hear sounds. “a cochlear implant bypasses damaged portions of the ear to deliver sound signals to the auditory (hearing) nerve.” (WebMD) I have a device that was surgically implanted in my head and through the cochlea of my ear to deliver sound to my brain. I do not hear with my ears. No matter how high I put the volume on my cochlear implants it will not improve my hearing. I know it’s confusing, but trust me, I’ve had both, a hearing aid and a cochlear implant, they are not the same in any way.
With my hearing aids I could turn up the volume and hear, no they were not perfect, I still had trouble with wind, noisy situations….all kinds of things. The point is that the only thing that a hearing aid can do is amplify sound, if that will help you, that’s great. I honestly wish I could still be helped with hearing aids. I was not deaf without them, without my cochlear implants I hear nothing.
When I started losing my hearing I asked my doctor if I should learn sign language, he said, “You will never be deaf” I realize now that he meant that even if I lost my hearing, he would simply give me a cochlear implant. Which he did. In hindsight I should have learned ASL (American Sign Language) before I started needing it. I do not believe he understands the limits of the device
My audiologist warned me that some people do not hear speech with their CI’s, some only hear arbitrary sounds (clicks, whistles…) She told me that people who have had hearing often do better than those who have never heard. Their brains simply do not have anything to relate the sounds to, that isn’t always the case though. (again, I know it’s confusing, we’re just different) I heard speech immediately, but it sounded strange. Everyone sounded like Mickey Mouse, luckily I like the Mouse, but it did get a bit annoying. Gradually I began to hear people the way I remembered they sounded. It’s a little funny that still sometimes when I meet someone new they will sound a bit like a cartoon. And do not ever ask me to understand an accent.
In the comments connected to this article people talked about how they could talk on the phone, play music, go to plays….and they spoke of them as if everyone with a cochlear implant can do those things. I can’t. I cannot talk on the phone, and those caption phones are a joke. They don’t keep up with the caller and they get a lot of stuff wrong. It’s more annoying than simply saying, “I can’t do it” and that’s sad. I miss music. I miss music so much. I am literally tearing up just writing those words. I sing often, but I can’t remember the words to many of the songs, so I make them up. I want to be playing carols this time of year, but alas it will not be. I can’t hear it. I can hear the melody, but the words, nope. And that makes it just sound garbled. I do so miss music. I have been able to go to the movies thanks to the caption boxes, but it is difficult. There is one theater close to me that is looped, (A hearing loop (sometimes called an audio induction loop) is a special type of sound system for use by people with hearing aids and cochlear implants. The hearing loop provides a magnetic, wireless signal that is picked up by the hearing device when it is set to ‘T’ (Telecoil) setting.) So the sound is piped right in my ears. You would think this would be perfect, but it’s not, I still needed the caption box, but I didn’t use it near as much. It’s an independent theater though, so I’m still out of luck when I want to see a popular movie. I cannot imagine going to a live event that has not captions.
Being deaf is very isolating, even with a cochlear implant. It’s very hard for me to go out alone, to attend a party, to take a class, go to a restaurant, or…well, so may things. I’m lucky I have a husband who helps keep me active, and understands my fears, many people do not have this. If you know someone with hearing loss, reach out, they need all the friends they can get who understand their challenges.
This post got to be a bit longer than I intended, but I hope I’ve helped some of you understand a little bit more about how differently those of us with cochlear implants can hear. Just because you know me, and my struggles doesn’t mean that the next person you meet with a cochlear implant will have the same issues I do.
If you’d like to know more about me and my cochlear implants you might enjoy this post What it’s like to have a cochlear implant Just remember, it’s only my story.
*The photo above is of me with my CI taken a couple of years ago. Yes, it really is orange
I’ve been saying that I’m “working on a post” for a while now, but I haven’t. I’m not sure why. I haven’t been too busy. I think I’ve just been avoiding talking about things.
My bipolar episode has lasted much longer than I ever anticipated. I’ve been stable for over 20 years and suddenly I had this awful episode that left me feeling like I didn’t deserve the life I’ve built for myself. I knew if things didn’t change soon, I wouldn’t be able to carry on. After trying to get my medication working and failing, we decided to go back old school, I’m on Lithium again. This is the first drug I was put on when I was first diagnosed. It worked for a very long time, but it damaged my thyroid and we decided to try something else. Fortunately, at the time, I responded well to the alternative medication. Since the damage to my thyroid as already happened, there is really no reason for me not to take it, and fortunately, it works really fast. After being on it for about a week I could tell a huge difference. I’m still having that low hum that makes me feel like I’m going to explode at any moment. But I don’t explode, I might get angry, but I don’t have the rage I was experiencing. I just increased my dose, so I’m hopeful that anger hum will diminish soon.
That is the good news. I’m leaving out all the rage episodes, the night I was actively seeking for a treatment center to commit myself because I was very afraid I was going to harm myself or someone else, the anger I felt toward my psychiatrist because I can’t hear a word she says and I have to have my husband in there to help me. At this last appointment I was so distraught by everything I couldn’t really talk at all, he had to tell her everything. Before we left I asked where I should go if I were in crisis, she asked if I felt suicidal, I told her how I had been feeling, she simply told me which facility I should go to, but I didn’t feel like she took me seriously. Perhaps I’m being overly sensitive and she understands that hubby will be here to monitor me and see me through this trying time. It’s very hard to get to know a doctor when you are in the throws of a (disphoric mania) mixed stated bipolar episode. Yes, I did say, mixed state. I’ve only talked about the rage here, but I’ve been bouncing around from extreme anger, severe depression, and wanting to jump my husband’s bones….all in the same day. Sound a little crazy? Yep, I felt that way too. Thankfully, it’s calming down and I’m feeling more like myself.
Unfortunately, I can’t say the same for my health. The vertigo, migraines, and hypoglycemia have had me pretty sick, most of the time. Last Saturday we went out to breakfast with my father-in-law, shortly after getting our food the world started to spin. I lowered my head, took my meds, and told them to continue. I was sure it was going to be a quick attack and I’d be okay in just a little bit. I might not be able to eat, but I could take it with me. I was wrong. The spinning got worse and I was afraid I was going to vomit right therein the middle of the restaurant. I got Stuart to get me a throw up bag from my purse and I clutched it tight. I told him it was BAD, REALLY BAD, and I needed to go home. I motioned for him to get the food to go. Hey, I wanted my pancake! I really didn’t think about how hard it would be for me to walk out. I couldn’t focus and I felt like my body was moving in ways that my brain really wasn’t telling it to. The sensation of being moved from forces that no one else sees is very disturbing. I used to think I had gotten to the point that I was okay with all of this, but I really,really hate it. I knew my feet weren’t going straight, I kept trying to compensate, that seemed to make it worse. I clutched on to Stuart for dear life. It was absolutely mortifying. The only thing that would have made it worse,is if I had thrown up too. I will say,my brain seems to deal with the episodes better than it used to, I rarely throw up anymore. Of course, I did get a Phenergan in me at the very first sign of the attack, and as soon as we got outside Iused my vape pen that’s 4:1 CBD:THC just a little and it calmed my stomach right down. I also never feel the psychoactive effects with this ratio. Itis still illegal to use medicinals in public, under normal circumstances I’d never do it, but we were away from other people, and since people use those cigarette vape pens, no one knows what I’m doing. But as I said, normally, I’d never use that in public. I thought about using an infused candy or tincture, but they simply don’t start working fast enough to help stop vomiting. But I digress…. This was the first time my father-in-law has seen this, that was hard, but I’m relieved he does understand some of what I go through before he moves in with us. He also handled it with grace and was very helpful to Stuart. Not that I really noticed at the time.
I’ve had a lot of challenged with my balance this past month. Kinda regretting buy a car, but even if I can’t drive it, it’s nice to have a convertible in the family. I am very disappointed that I can’t drive though, having that feeling of independence was nice. I was still having vertigo occasionally, but it didn’t last long, it was mild in intensity, and I always had signals that twas about to happen, so I wasn’t afraid to drive. That all changed. I accept it, but it makes me sad.
I found a new ENT and I really like his so far. He admitted that I’ve had all the treatments that he could recommend, yep, I’ve had it all really. He did say he could give me steroids to try to help with this flare, but since I had Avascular Necrosis that they think was caused by steroid use, I don’t use them if at all possible. He understood. He suggested trying Benedryl everyday because it’s a vestibular suppressant. I never knew that. I tried it for over a week and didn’t get the results we’d hoped for. So I asked if I could take diazepam for a week or two to try to calm itdown and he said yes. Also, the Audiologist there called and said she isn’t as experienced working with my brand of cochlear implants so they are having the Advanced Bionics specialist come in to do the adjustment to my CI’s (mapping). I was so very impressed with that.
I’m also working on getting a new migraine specialist, I really don’t like the guy I’ve been seeing. So cross your fingers I like the new lady.
I’ve done something that I’m afraid I may have a very hard time pulling off. We had planned to be in our house by now and we planned to host Christmas there. Well….I decided we still needed to do it, but man is it going to be a lot of work. I’ve invited the whole family, and one friend. That’s 6 adults and 2 children..
But this is the first Christmas that Stuart’s step-mother will not be home. I feel it’s important for his father to be surrounded by all of his family for a Christmas celebration. We are having it on the 22nd so Dad can spend Christmas day with his wife. We have been thinking about joining them, but it’s a busy time at the home, and her daughter and her significant other will be there. So, I think it will be good to go have dinner with her between Christmas and Thanksgiving.
I’ve been trying to make cookies, the kind you decorate all pretty with royal icing. I decided they were WAY too sweet with the icing, since it is just a sugar cookie, so I’ve been trying to make the icing less sweet. Problem is, as I have been working on a new recipe I have to keep tasting it. This stuff is super sweet…cloyingly sweet. So twice now, I’ve had a hypoglycemic crash. Feeling dizzy, light headed, sick to my stomach….ok so none of that is new….cold sweats, shakes, stomach cramps….I even threw up. Yep, blood sugar drop. Now I’m not even sure I ever want to decorate cookies. My back always hurts when I do it anyway.
Oh…other challenges this week. I had my physical on Monday. All my numbers were good! Even my triglycerides, they have only been normal one other time in my life. Shockers! However, I was having a slight pain in my kidney area and asked if she’d check my urine. I’m so glad I did! By the next day I was in severe pain, still am if I’m honest, and the nurse called and said that I have a UTI. HAHAHA I found that amusing because I really had no idea when I asked for the test. My back has been hurting so I thought it was just that, it was obvious the next day that is wasn’t. So now I’m taking antibiotics…eww. Can you imagine how much worse it would have gotten if I had needed to go back to the doctor for a test? Phew! that was lucky.
I also got a pneumonia vaccine, I had to have one when I got my cochlear implants, and I was supposed to get a booster in a few years, I’m about a year late, but I got it done. (it is supposed to reduce the chance of meningitis) 1% of the people who get this vaccine have a reaction to it. Yes, I am that special! The injection site swelled up and turned read. It measured about 3” in diameter, and it was so painful. If I moved my arm a very sharp pain would shoot through, not as if the muscle was sore, a very sharp pain. I couldn’t lie on that side for over 3 days. Finally it is feeling almost back to normal. Golly, that was an experience.
There I think I’ve caught you up on all things Wendy for now.
I hope you are having a joyful holiday season. Try not to overdo, as you can see I probably am…..big dummy. 😊
*photo, “Water Droplet on Sage Leaf” taken by W. Holcombe. Please do not use without permission. All rights reserved
For the past month or so I’ve been filled with an inner rage and desperation that has been screaming for help. I was hearing all the anger, fear, and sadness, but I couldn’t hear the call for help. This week I finally heard it. I finally understand that I haven’t been just reacting poorly to the stress in my life, or having mood swings because of a hormones, no, I’ve been having a bipolar episode. I still know my moods aren’t where they should be, but it’s better than it was, and I will be seeing my doctor about it very soon.
I have so many things I want to say, I don’t know where to start. hmmmm.
I have been reading about bipolar symptoms, specifically rage, and saw many things that are too familiar. The rage can be set off by the smallest of things, often something I would never even consider getting mad about on a normal day. The anger starts and builds quickly to a full blown rage! After all the screaming and throwing things, and who knows what else, is over I feel better for about 2 minutes then I suddenly think, “Oh my god, What have I just done?” Bipolar rage if often associated with mania, but can also manifest during depression. For me if the rage is from a manic episode I blow up fast and furious, but it burns out as quick as it started, leaving only the guilt and hurt behind. When the rage comes during a depression episode I will have a huge blow up and it will go down, but he anger is still there, and I will blow up again, or I just stay angry for a long time. The rage inside wanting to break through the surface. So rage during mania is like a short burst, the rage during depression is a short burst followed by underlying anger and possibly another burst or two. Both can cause everlasting damage, but the later is much harder for me to deal with. When the anger doesn’t just go away after a rage episode I start to think it’s not caused by my mood disorder I’m just a bitch, and I start getting angry at myself. So much anger, that is so hard for me. I’m not normally an angry person.
Sometimes I will get angry about something, but I don’t let it get to me, just slough it off – at least I thought I did. Often when the rage hits it’s after I’ve had a few things happen that have caused me to get mad, but I didn’t feel like it was a big deal, I thought I was just letting it go. It seems to me that it will often be a little thing that sets it off, but it’s like the last straw kind of thing, all those little things I have gotten mad about suddenly rise to the surface and that one little event that made me blow up was fueled by all those other small flames.
Rage can damage even the closest relationships. It can cause trouble at work, with your family, friends, authorities….rage can really mess up your life. I’m so very lucky that my husband understands that my rage may seem focused on him, but it really has nothing to do with him. Sometimes it does spark conversations and we fix all those little things that built up, but honestly the rage is never deserved. Even though he knows all this, it is still very, very hard on him. When I get to the breaking point I often leave. I will pack a bag and set off. I have no idea where I’m going, and I just get madder because I feel I have no where to go. When I leave like that it hurts and scares Stuart so much. During this last episode I made him cry. My husband does not cry often.
I was mostly stable for over 20 years, but over the last few years I’ve had more than one break through episode. I’ve needed to change medications too many times. I’m afraid we are going to get to the point where nothing works. In addition to Bipolar I disorder, I also have generalized anxiety disorder. Trying to find medications that treat both and I can tolerate has been a challenge. I’m hoping the gene test I did will help with that. I can definitely say, that the new medication she put me on is not working, we have to find something else.
For over a month now I’ve been dealing with severe anger mixed with depression and anxiety. I have also been getting tickled over the stupidest stuff and laugh until it hurts, but that doesn’t last long and I return to the negative moods quickly.
I think the rage has also been triggered by the return of my vertigo. I’m back to having attacks multiple times a day. I do think many of them are caused by migraine instead of Meniere’s because with some attacks I’ve been having aura right before it starts. The fear has been real. Not just the fear that it is coming back, I’m actually starting to accept that I am having a relapse, but I know the is a possibility for a remission. However, I fear for my safety. I’ve fallen 3 times in the past 2 weeks. I’m back to using my walker in the house and sometimes when we go out. (often when we go out I can use a shopping cart, or Stuart’s arm to steady me enough that I can get by for a bit) For the most part I’ve been confined to the house, without the ability to do much of anything except watch TV. I did sit outside once this week, but I had vertigo outside without anyone home, I had a very difficult time getting back inside. I don’t think I’ll be going outside when I’m home alone any time soon. I did ask my landlord yesterday if he would be a backup for me if I fell and needed someone and Stuart couldn’t get home, gratefully he said he would. Of course, he also might not be available, but I’m relieved to know there is someone can call if I need it.
I think that’s enough for today.
I’ll leave you with a few photos I took yesterday of the flowers around my yard. I miss seeing the leaves change colors, but I’m seeing a different beauty in the desert. (most of these are Lantanas, technically a weed from Mexico. It is very pretty and drought resistant. You will find them all over the area. I’m thrilled to see this gorgeous native plant almost everywhere I go)
Early yesterday the barometric pressure took a nosedive and my head went with it. My head started to throb and the light was excruciating; I took meds and carried on…or I tried to. I realized I wasn’t up to grocery shopping or cooking to I looked in the pantry and threw a few things in the slow cooker for soup. Then it was a sit in the chair and knit kind of day, and I was okay with that.
After Stuart got home we had soup…I’m so thrilled with how well that soup turned out, btw. I left the room to go to the bathroom and I felt it hit….the bottom dropped out of my stomach, I got all hot, and my view began to spin….vertigo. I leaned, for support, with my forehead and palms resting flat on the wall before me, knowing if I moved I would fall down, I called out for Stuart. He came and helped me to the bathroom and back to my chair. The worst had not arrived…
As we got ready for bed I took my nightly meds and started to settle down when I started to feel bad, really bad. I mentioned to Stuart that my meds were kicking in really fast and I was feeling loopy. (this does not happen, normally I take my meds and I start feeling sleepy, I read some and then go to sleep, I never feel “loopy” from my night meds) I decided to just lie still and try to sleep, then I suddenly got hot all over and my stomach wanted to rebel! I laid very still trying hard not to move my head, but it didn’t work, the room began to spin and I felt like I was moving….vertigo…again…damnit!
I tried so hard not to disturb Stuart. He has to get up really early to go to work and I hate when I have to disrupt his sleep. He stirred a few times and I admitted I was sick but told him to go back to sleep. I knew I could handle it, at least I told myself that. I did sleep some, on and off, all the while feeling like I was moving. Every slight movement of my head caused the room to spin faster, and my stomach to lurch. I was not doing well, but I was dealing with it. I survived the night, and I didn’t vomit, that is a miracle.
Today, I still have this feeling of motion and if I turn my head quickly the room spins, but for the most part it settled down. Now it’s all the other symptoms that go with vertigo that are still getting to me. The gastro-intestinal upset, the extreme fatigue, the anxiety, and, of course, my balance is completely compromised. It’s been a challenging day.
As I sit here writing this I’m reflecting on this illness of mine and how it has manifested itself over the years. It came on sporadically, having severe vertigo attacks once or twice a year without any other major symptoms, then it turned into me having vertigo multiple times a day, sometimes minor, sometimes very severe, I was basically bed bound for almost 3 years. Then less than 2 years ago I started having less and less vertigo and the attacks I had were not nearly as severe as they used to be, I have been so much better that I started to drive again. I even bought a car a couple of weeks ago. Now, I’m being reminded that this will always be with me. I will never escape Meniere’s disease, and I’m scared.
The fear escalated through the night and all day today. My thoughts keep running to the “what if”s. What if this is a new stage and it’s worse? What if I can’t drive and I just bought a car? What if I need more help than is available now? What if?????
Can you see me spiraling out of control?
Time for a reality break. Yes, I have Meniere’s and I always will. Yes, it is unpredictable. Yes, it could get worse, or it could get better. Nothing is certain. Life is not as I expected, so I will change those expectations, or better yet, I won’t have any. Now, it’s time for a deep breath and a good night’s sleep. Tomorrow is a different day.
It’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.
Last week was my first time participating in the Ten Things of Thankful challenge, and it made me feel really good. This week my ten things were not as obvious; I think that makes it even more important to take note of them. I’ll be the first to admit, I did not have a good week. A lot of pain and stress has taken hold of my body, I’m holding on, but it’s getting difficult. It’s time to step back and figure out how I can make things a little less demanding. Every weekend is filled with so much to do, when it gets to be Monday I’m in full flare. That has to stop, but I really like my busy weekends. I haven’t been able to do any of these things in so long, it does my heart good to be able to do them now, but my body is not as happy with me, and I’m afraid if I don’t slow down my body is going to make me.
I’m so very thankful:
- for my amazing friends who keep me going every day. Some I “talk” with almost every day, some I don’t keep in touch with as often. but I know they are there for me, and I am so very, very thankful for that. I can only hope they know I’m there for them too. I love my people.
- that I didn’t get really hurt when I fell down the other day. Yep, I fell, again. Hey, it’s been a while, and I didn’t fall because I was dizzy or anything like that, I fell because I stepped on something slippery and my foot flew out from under me. Mostly, it just scared me.
- that I was able to go back-to-school shopping with my niece. It’s so much fun getting to know my niece and nephew, I’m so grateful we can now spend so much time together.
- that a local friend of mine texted me today saying that if there is every an emergency I can call on her. That really meant the world to me. She’s local, and I haven’t even seen her yet, I must rectify that.
- that I have Air Conditioning. It has been dangerously hot here; I honestly don’t know how anyone could live here without A/C. There are so many homeless people here, I don’t know how they survive in this heat. I’m so grateful I have a safe home and don’t have to live on the streets, my heart goes out to those who do.
- that I have been having fun learning to decorate cookies. I’ve only just begun to learn about it, but I’m having so much fun discovering this new art form. I attempted my first watercolor on a cookie this week, it turned out pretty cool, not perfect, but not too bad.
- That my father-in-law is letting me use one of his cars, and it’s a really cool car too. I’m just beginning to drive again, after a few years, so it feels amazing to be able to get to go somewhere whenever I want. I’ve only gone on one errand so far, I’m very nervous driving here because I don’t know the area and I can’t hear the GPS. I need to get a GPS that I can see without taking my eyes off the road, that would make things much easier.
- for cooler mornings. I’m trying to get up earlier so I can enjoy the weather before it gets too hot, some days I make it, other days, I don’t get out much.
- that my surgery is soon. Just got a call this evening that my surgery date has been changed to the 7th. This is causing a bit of inconvenience with Stuart and work. as that was supposed to be a training day for him, I’m grateful he will still be able to take me.
- that I was able to do write a post. With my wrist pain, migraines, and additional pain this week, I didn’t think I’d be able to get this done, I’m so grateful that I could do it.
What are you thankful for this week? I’d love for you to share with me just one thing you are grateful for this week!!
I’ll try and write more about my surgery soon, a little mini update before I have to disappear for a while.
I’m always thankful for you.
We all see them, the chronically ill who are living amazing lives, even doing things above and beyond what most “normals” do. They don’t let their illnesses stop them. They thrive despite their illness. These people are supposed to be an inspiration. We are to be amazed and we’re supposed to look at them and realize, “Hey, if they can do it so can I.” (does that really work?)
There always seems to be a celebrity who has the same disease you do. As a spokesperson for our illness they are supposed to be an inspiration, after all, if they can do it, why can’t I?
Do they really inspire you? Does it give you hope? Or does it make you feel inadequate? Does it make you feel bad because you haven’t been able to do what “normals” would define as remarkable things in spite of our illness.
For me, it’s often the later. I feel inadequate because I simply cannot do the things I used to, let alone do extraordinary things that I’ve never even thought of doing.
It concerns me that people will compare me to those “inspiring” people and think that I’m exaggerating the severity of my symptoms. I’ve had well-intentioned friends and family members send me articles about someone who has Meniere’s Disease and how they are are either living amazing lives despite Meniere’s, or they were “cured”. This happened a lot when Dana White (president of the United Fighting Championship), underwent a treatment for his Meniere’s and it was a “miracle cure”. What they don’t realize is that there is more than one cause of Meniere’s, so his treatment may do nothing for me; he has Meniere’s in one ear, I have it in both. They also seem to ignore the fact that he had to go to Germany to have this procedure done….ummm, who’s going to pay for this? Not my insurance that’s for sure. and just how safe is it? After they send these messages, I wonder, do they think I’m not doing everything I can?
When we hear that someone is an inspiration, it is supposed to be a positive thing, but inspiration can be negative. You can inspire people to do bad things. Look at Charles Manson or Adolf Hitler, for example, they inspired people to do all kinds of horrible things. They were very inspirational, just not like we have been conditioned to think of the word.
The people who inspire me to try harder, to live more fully, to embrace life, and simply care more are the amazing people I meet who have chronic illnesses and can still love their life, with all it’s limitations. I’m amazed by the people who undergo many painful medical procedures and still greet each day with love. I’m positively inspired by those who are able to push through and do the everyday things, even when life is just so hard. The people who show compassion and support to others despite the fact that they get so little themselves, these are some of the people who inspire me to be the best me I can.
I’m not saying that famous people can’t be a positive inspiration, I’m simply saying that is not always the case. When I see a list of famous people who suffer from vertigo, it doesn’t inspire me to do anything. I feel compassion for them, and I often wonder exactly how much they battle with their illness behind the scenes. What are we not seeing? The phrase, “but you don’t look sick”, sure hits home when we see someone like the beautiful Selena Gomez, who has Lupus.
Then I hear things like, “Nicolas Cage suffers from vertigo all the time”. Ummm, really? All-the-time? I could believe he has disequilibrium all the time, but full blown vertigo, no way. I simply do not believe it. If he has vertigo all the time and can function as well as he does, that would be a miracle. I can believe that he may have recurring vertigo, but not constantly. I’m pretty sure I’d kill myself if I had full blown vertigo all the time.
Who inspires you to be the best you can be?
Do you get positively inspired by famous people who have your illness?
Does it make you feel inadequate when you hear that someone who has the same illness that you have has done something like run marathons, or started a successful business, or has won the “Golden Buzzer” award on America’s Got Talent, like Mandy Harvey did, who is deaf?
Am I the only one who is rarely “inspired” by these stories?
*image is a screen shot from Dictionary.com