I’m so tired. I’ve experienced fatigue before, but nothing like this. I can’t stay awake, except at night, when I can’t sleep. I’m restless, yet I can’t get it together. I started exercising more this past month, but this past week I haven’t been able to do more than what is absolutely necessary. A little while ago I put some dishes in the dishwasher and now I’m ready to take a nap. I am having a very hard time keeping my eyes open. Lifting my limbs is a challenge. This in conjunction with extreme brain fog, yes writing this post is a challenge, it’s also why I haven’t been able to follow through on promises made. I really hate that.
What changed? I honestly don’t know of anything that has changed so much in the past week that would cause this. I don’t think I’m sick. I’m not running fever or anything like that. My headaches haven’t been worse, they aren’t better, but they aren’t worse. I haven’t increased my medication. I am taking CBD oil during the day, but I’ve been doing that for over a month now, so that’s not new. I’ve actually been taking less this week because I keep forgetting. As it has been pointed out to me countless times by numerous people, I have been under a huge amount of stress, but honestly, the stress hasn’t really intensified recently, it’s been pretty steady for months now. I’m dealing with it pretty darn well, if I do say so myself. The only thing that has my mind racing is our house hunting, it’s taking longer than we expected, and it’s just getting to me a bit. I’ve decided to step back from the search for a few days at least, a bit of breathing room, get refocused and start again next week.
I’ve been using marijuana to help me sleep for a long time. (full disclosure, I was using it long before we moved to a legal state) for some reason it’s not working like it used to. I can’t sleep, yet I can’t stay awake, what’s up with that? When I try to go to sleep at night I just toss and turn, often I just give up for a while and get up. It’s hard not to snack in the middle of the night when you’re up all night. OK, I’m exagerating a little, I am sleeping …some…
Okay, my brain is not working. I’m about to fall asleep…probably not really, but I feel like it. It is storming like crazy right now. Monsoon season is almost over, as much as I’m tired of the storms every day, I’m going to really miss them when we go for months with no rain. Plus, they are really cool.
Some reasons I might not be sleeping…hmmm….pain. My wrist is getting better, I’m not having those horrible sharp pains and I have much more range of motion. I can pick up dishes without extreme pain! That’s awesome! But, now it hurts all the time. The pain is not as intense, but it’s always there. I bought some CBD salve yesterday and I’m rubbing it all round my wrist and hand, not the actual surgical site yet, I get my stitches out on Friday. after that I’ll rub it all over. Cross fingers it helps ease the pain a bit. I feel silly complaining, it’s not that bad, it’s just constant. (sometimes I do still have some sharp pains, I was just reminded of that a few moments ago when I tried to help with dinner)
Thank you all for listening to me rant. I do accept that this is the way it is right now, but that doesn’t mean I shouldn’t try to figure out what is going on and take care of myself the best I can.
I swear if I hear one more person say that something that is wrong with me is due to stress I will scream! I have felt this way for many years. When I was having vertigo daily they said it was made worse by “stress”. When my asthma went crazy, they said “stress”. When I had severe GI issues for months, I was told I needed to reduce my “stress”. You know the last time I looked stress does not cause Meniere’s Disease, or allergy onset asthma, or fructose malabsorption. Don’t get me wrong, I know stress can do a number on you, but I feel like it’s a catch all. If they don’t know, then it’s stress, after all if they can’t fix it then it has to be MY FAULT.
Finally, I am having issues that I think may actually be caused by stress. I will be the first to admit the last few months have been pretty stressful. My mother-in-law was placed in long term care, we moved across the country, I left my sister with the understanding that we may never see each other again, Stuart started a new job, I’m finding new doctors, I have to have surgery on my wrist on TUESDAY, I don’t know how long to expect to be out of commission to recover from said surgery (I hate being so dependent, not having use of my dominant hand is hard), we’re looking for a house (and not finding what we want), we’ve been looking at cars (for me), I’m starting to drive again, we’re living in a small house that I can’t get organized because we don’t want to get too settled since we will be moving again soon, I’m suddenly surrounded by family (some of that’s good, some not so good)…………….WOW. writing all of that out was stressful, and I haven’t listed everything.
For over a month my migraines and cluster headaches were much, much worse, is this because of the stress, or is it causing more stress….short answer, Yes. I must say though, for the past week they’ve been getting better, I think it’s because of the medical marijuana I’ve started using (more about that soon). I’m having some GI issues that just don’t want to stop. (it’s even waking me up at night, and I haven’t made it to the bathroom a couple of times…is this all from stress, who knows, but I doubt it’s helping), I’m irritable, quick to anger, and just plain grumpy. I’m overwhelmed and in pain, and I’m taking it out on everyone else. I don’t like myself right now. My anxiety has increased, but it’s not too bad, yet. I’ve been a little depressed, but it’s not all consuming. So, there’s a lot to be stressed about and it’s kind of taking it’s toll.
I’m trying to meditate every day, but it seems the more stressed I am the harder it is for me to meditate. I feel like I’m not being very mindful either. I’m living too much in the future. We are buying our forever home and I keep thinking things like, “I don’t want a pool because I don’t want to keep it up when I’m 70”, “I don’t want any stairs because I might get sicker again, and I also we might now be able to climb stairs in a few years.”, and my personal favorite, as I’ve been going though things and deciding what to keep I keep thinking, “will anyone care about this when I die?” ….I just turned 55, I’m not that old, but I sure am living like I am. (except I want a cool yellow car, that will keep me young) I worry about how M’s condition will advance. I worry about Dad, he spends all his time at the home what M, and she’s beginning to have moments where she doesn’t remember who he is exactly. How is he going to handle it when she no longer knows who he is. Then I think about what M’s daughter said, she told me about another relative who had Alzheimer’s and how they told her that they may not know who she is, but they know they love her. I think Margaret will always know she loves Dad. It breaks my heart every day though to see this amazing woman slip away. (she just turned 77)
I really want to get back to focusing on living in the moment and simply not worrying about the rest. Why worry about the now? It’s going to be gone in an instant. I want to invite joy in my life. I want to step away from the drama that I’ve found myself dropped into. I need to nurture my inner self.
Little update on me: My surgery is scheduled for Tuesday, the 7th. It is a minor surgery, I’m not even put under general anesthesia. They just put a little incision on the inside of my wrist below the thumb (on the side, not the palm) and snip a little to release the tendons. When I saw the doctor in Charlotte, NC, he told me that often when the injections don’t do anything that there are actually 3 tendons running through the sheath instead of 2. He said they don’t know why but it often doesn’t show symptoms until middle age. This is even more probably since I have it in both wrist, luckily the injection worked pretty well in the left wrist though. The doctor here didn’t mention it, but he did comment that the orthopedics department at Atrium Health (formally known as Carolinas Heathcare System) is one of the best in the country. (right now they are ranked number 3) So I kind of believe the doctor at CHS.
My migraines have improved some since I started using medical marijuana. Most of what I’m taking is a very high grade of CBD oil. I will write a post soon telling you all about my journey through getting a card, learning what to buy, and my experience in the dispensary. The gammaCore has still not arrived. The doctor’s office dropped the ball when ordering it, then they didn’t put in the request for the free trial for the first month. (they did change offices this month, and my doctor is new and has been the only doctor in the group to prescribe the gammaCore, all of those factors led to the good up) The gammaCore company called Stuart last week and told him that it should be no problem getting it approved by my insurance. If that is the case, why haven’t I received it yet? I sure could have used it this past month, the cluster headaches have been killer (literally, if I thought I had to live in that kind of pain all the time, I’d kill myself. Cluster headaches are called Suicide Headaches, because of that very reason, people will kill themselves to get relief. I start Botox in about a month; I was supposed to start on Thursday, but that was my original surgery date so we cancelled it. The monsoons are causing a lot of severe barometric changes almost daily, I’m sure this has been one of the reasons my migraines have been so bad, so hopefully they will get much better in a month of so, when the monsoons are over.
It’s late and I have a headache, so this post was not even read over to check for errors, please forgive any typos, grammar errors, or other atrocities.
“Whether we are basically healthy at the moment or have a terminal illness, none of us knows how long we have to live. Life only unfolds in moments. The healing power of mindfulness lies in living each of those moments as fully as we can, accepting it as it is as we open to what comes next—in the next moment of now.”
― Jon Kabat-Zinn, Full Catastrophe Living (Revised Edition): Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness
Trying to hold on to the good days, thinking life will stay that way forever is fruitless. It will change. And it has.
My hip flare up, that was just this little thing, that was supposed to calm down after the cortisone injection….has become a complicated mess.
I had my hip injection on September 11th. We got Kiki that evening. It was an exciting day. I expected to be sore that night. I expected to possibly be sore the next day, but would probably feel better….and continue to get better. That didn’t happen.
I’m not sure if the shot did anything. I don’t think so. However. on the night of September the 12th, I got up and went to the bathroom. I started to sit on the toilet and lost my footing and fell, hard, onto the seat. My elbow hit the back of the toilet where I keep a box with things in it and I got a nice little scrape on it. The big hurt was my hip. OW! The pain shot through me, from the top of my buttock, along my side down through my knee….I was in PAIN! I have been in constant pain in this areas since that night. The pain ebbs and flows, but never gets better than a 6, and if often hovering around an 8. I had Stuart give me a Toradol injection. This really helped. Toradol is a nonsteroidal anti-inflammatory drug. (I can’t take NSAIDs by mouth because they tear up my stomach, but I can have these injections occasionally.) Since this worked to take most of the pain away I was sure I hadn’t broken anything. I was also hoping the cortisone shot would kick in and help. So I waited….
The cortisone didn’t help. I went back to the doctor on the 18th. She was disheartened. She suspects that my pain may be coming from my spine, and maybe also from my hip. She set up a CT scan with contrast dye, and she wants me to see a spine specialist, and a more specialized hip doctor. (she is actually a PA in the office, she wants me to see a specific doctor in the practice). I will have the CT scan on Friday. (I was originally supposed to have the CT scan today, but I didn’t sleep at all last night and I can’t control the Meniere’s vertigo today, and since I could get in closer to my doctor’s appointment I decided to change the appointment.) I see the hip specialist on October 1st, and I’m not sure when I see the spine doctor yet, I haven’t heard from their office yet.
How am I handling all of this? Some days very well. Some days not well at all.
I have had a hard time not getting really stressed out about this. I’ve been creating “what if” stories in my head. My mother started having back problems in her 50’s and it really changed her life. She died of lung cancer when she was 64, but I’ve never been convinced it really didn’t start in her back. There are many reasons I believe this, I won’t get into them here. What if I have to live with this pain forever?…….See the stories I have been spinning in my mind….this is not a good thing. This is not a mindful thing to do. It does NOT make things better. It makes it worse. The stress builds, and everything spirals out of control. When I think like this I can feel the depression creeping up over me. It is oppressive.
Then I try to be more mindful. Being mindful is hard. It isn’t something you can just click on with a switch and suddenly you think mindfully all the time…I wish I could, I think I would handle things better. I’m trying. First, I am trying hard to stay present. I cannot change what we are going to find out, but I sure don’t have to make up all these horrible scenarios. I could have something easily fixable. If I have something that is more difficult to deal with, I’ll deal with it. Either way, I don’t have any idea, so stop speculating. Keep my mind in the present, right here, right now. That is the least stressful thing I can do.
I also got so stressed because we got this precious little dog, Kiki, to take care of and suddenly I can’t take care of her. I can’t even feed her. I can’t take her out. I can’t care for her at all. Stuart would not have signed up for this had he known he would have been the sole caregiver for me, Max, and now Kiki. We would not have adopted Kiki at this time. Does he regret it? No. But would he have done it? No. So I have been having that emotion that simply doesn’t help…..guilt. I have put more work on him, and I feel guilty because I can’t take Kiki on long walks and to the dog park and do things I feel she needs. I can’t focus time on training her. I feel guilt. Ugh! useless!
Not sure how that is handled in mindfulness, but I know for me, I need to channel that into something constructive I can do. Haven’t figured all of that out exactly, but I will. Yes, this is not how I planned for things to go, so I need to change my plans. I have been playing with Kiki more indoors as much as possible. She will bring me a toy and I will throw it. She brings it back and drops it in my hand. (how cute it that?) I have taught her to sit before I’ll throw it again. (really, she was already doing that most of the time.) I will hide it and have her find it. (I think this is a newer thing for her!) So we are working on some training. It’s just different from I planned.
Then I go back again to how I feel about my body, and what is happening. My Meniere’s is acting up big time! I always tell myself to stop trying to figure out why, it used to drive me crazy, and I would end up blaming myself for my attacks, but this is pretty obvious. The pain will not allow me to sleep or rest enough. I can’t relax. Also, it is Rag Weed season. I think I’m handling the rag weed pretty good, but I can’t keep up with the exhaustion. My hearing is going up and down; yesterday if I was blind folded I would have sworn a jet engine was in my living room. When the noise started I kept asking Stuart, “what is that noise?” He looked at me funny. I said, “You don’t hear it do you?” I realized it was just me…dang. Then it got louder and louder and louder….and it lasted for over 2 hours at the loudest point. I’ve never had that happen before. I’ve had very loud tinnitus, but I’ve never had that it that loud for that long. It continued to be loud for the whole night but it did dial down a bit.
I hate to say it but, I’m just one big vertigo attack. I try to control them but that is exhausting too. Most of the time I’m spinning at least a little bit. I have been able to control it enough that I haven’t had full-blown… spinning so out of control that I can’t see what is in front of me… vertigo, but this constant boat feeling and everything waving is driving me crazy! I keep focusing on my breath…grateful I am still breathing. Then I laugh…they say breathe, take a deep breath..ect. It’s not like we are going to stop breathing. It is something we do. Do you ever really focus on your breath? Really think about it? If you have ever gotten choked and couldn’t breathe I’m sure you did then, but normally we just take it for granted, like we do our heartbeat, and how our brain works, or the fact that we blink…ect. So,right now suddenly I’m thinking about my breath, not just the in and out, but the actual breath. How it works. I have pulmonary problems so I don’t take my breathing for granted all the time, and I know a lot about how my lungs work….so I think about it, and really I’m thinking about how the oxygen goes through my body, how it nourishes my whole body, how my breath goes through all of me, down through my toes even. and suddenly I just realized….just now as I am writing this that I have calmed down and feel more in tuned to this body and it is just fine. It is working pretty darn good. It’s my body. I like it. I love me. I’m at peace with it. I accept it the way it is.
Now that is mindfulness. That is what paying attention to your breath is supposed to be…..wow. I feel better, right now. I know this isn’t easy. I’ll be working on being mindful forever.
When I mentioned writing Part 3 in this series I said it would be on Mindfulness Based Stress Reduction. I will touch on this subject, but I do not feel qualified to base my whole post on it. I will tell you how I got involved in mindfulness and how it led to Mindfulness Based Stress Reduction. (Note: I may refer to Mindfulness Based Stress Reduction as MBSR throughout this post.)
There have been a few times when I have read some of the Buddha’s teachings. My husband has called himself a “non practicing Buddhist”. After really studying more about Buddhism, I find this funny, but that isn’t a discussion for here. I mention his interest in Buddhism because it is what caused me to start reading about it. As I started reading and studying the Buddha’s teachings I found I was happy. It made me happy. Buddhism can be thought of as a religion or a philosophy. Many do not consider Buddhism a religion because it is non-theistic. You can follow the Buddhas teachings and continue to follow any other religion. However, that is not part of this discussion, I just thought it was interesting.
An essential element of Buddhist practice is mindfulness. Mindfulness, as defined by Psychology Today, “is a state of active, open attention on the present. When you’re mindful, you observe your thoughts and feelings from a distance, without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to experience.”
I’m sure you have noticed in many of my posts that I have mentioned that I am staying in the moment. I no longer dwell on the past, I do not worry about the future, I live in the now. This is just a part of being mindful. It is also important to note the part about…”without judging them”. Always be gentle with yourself. I used to be very bad about that. Even my doctor used to tell me, “Wendy, give yourself a break.” This was when I was very sick, I felt guilty about it. Now when I feel those thoughts come up, I will observe it, and sometimes I get wrapped up in it for a little while, then I notice it and take a deep breath and tell myself. “Wendy, be gentle.” and let it go. I bring myself back to the moment. I’m still in the infancy of mindfulness, I’m just learning, there’s much more to it than I know.
I have had many people get in touch with me who have Meniere’s disease, and I think every one at one point has said, “I just want my old life back.” This is, of course, a natural feeling when we get hit with such a devastating illness. However, this feeling often stays with us for a very long time. I realized through mindfulness I could let this go, and it was the best thing I could do. Looking back at my old life and wanting it back was not helping my life now. Nor was it helping to longing look at the future and hope for things to get better, or to look at the future and just know things could only get worse. I started using mindfulness to just look at today, and stop looking at my old life, (honestly, I didn’t look at the past for long, I’m one of those people who when they get hit with something says….”what now?”) However, I was constantly looking forward. Either with all my hopes on the next thing we tried, or when it failed believing that nothing was going to work and I was going to be bed bound and useless forever. (no I didn’t feel sorry for myself, I thought I needed to be prepared. well sometimes I felt sorry for myself.) With mindfulness I stopped doing that. I started just looking at today. Living in this day. That doesn’t mean I don’t make plans, that means I just go with the flow if plans change. I don’t freak out, I just go with it. NOT worrying about my future has made my future open to be written as it comes.
One symptom that has changed in such a drastic way because of this practice has been my vertigo. When I first started my mindfulness practice I was able to stay calmer during an attack. Then I was able to get through an attack without freaking out at all, I could stay completely calm. This turned to starting to focus on an object about 18 inches or so from me, I put my hand down on a solid object and breathe, telling myself aloud…”you feel the object is not moving, this is not real. This is not real, this is solid beneath your hand, it is not moving….” continually focusing on the object. Soon, I never saw the room spin unless I looked up from the object. Now, if I feel an attack coming on I can normally take a deep breath and center myself, focus my eyes on something still, and pull myself out of it. I usually stop the attacks now. Sometimes it takes a bit. I have to get cooled down and I need to be still for a few minutes just focusing, but I never start spinning. It will start to rotate a little but I will pull my eyes back to center, take a deep breath and just feel where I’m at. Tell myself it’s OK. I’m OK. If it happens I’m OK. It’s not real. Stay centered. Stay right here. I’m really just doing what I did during the attacks, staying focused, telling myself it’s not real, but now I’m simply being gentle with myself and letting myself know I’ll be OK no matter what, and it calms down and goes away. I started to panic the recently and I came very close to having a full-blown attack, we were in the small moving van getting things that were missed by the movers, riding to Charlotte on the freeway. I was scared because of where we were. When Stuart was able to stop, I calmed down and got everything under control and it went away. I was shocked. I was starting to spin. It was going, then suddenly it wasn’t.
Mindfulness and my mental health. My last visit to my psychiatrist was so happy. She was so impressed. We talked and I said something about what I told someone in answer to something and she said, “you really have been practicing mindfulness haven’t you?” We continued to talk and she reduced my anxiety medication. I’m not sure if I will be able to have more of my medications reduced, but I’m thrilled about this. It has been almost 2 months and I’m a happy person. I’ve had some periods of depression, but they were warranted, and were not prolonged. I have not been seen my therapist in over 2 months….I have been released to see her only as I need. So far, I haven’t felt the need. Great news!
Practicing mindfulness is the best thing I’ve ever done for myself.
That was how it started. Just little things. It moved to more things. Somewhere along this journey I started reading about Mindfulness Based Stress Reduction and Mindfulness Based Cognitive Therapy. Mindfulness Based Cognitive Therapy I’m interested in but know very little about, Mindfulness Based Stress Reduction I’m very interested in, I’ve read a lot about, and want to share some with you so here’s a little introduction to it and how I found out about it….
Mindfulness-based stress reduction (MBSR) (as defined in Wikipedia) is a mindfulness-based program designed initially to assist people with pain and a range of conditions and life issues that were difficult to treat in a hospital setting developed by Jon Kabat-Zinn at the University of Massachusetts Medical Center, which uses a combination of mindfulness meditation, body awareness, and yoga to help people become more mindful. In recent years, meditation has been the subject of controlled clinical research that suggests it may have beneficial effects, including stress reduction, relaxation, and improvements to quality of life, but that it does not help prevent or cure disease. (There have been some studies that contradict these findings, but I found many more studies on the positive side than the negative.) While MBSR has its roots in Buddhism , the program itself is secular. (funny thing, I always thought secular meant religious, but it means not religious, so when I was saying non-secular, I was really meaning religious. I learn something new every day!)
The MBSR program is an 8 week workshop taught by certified trainers. I have not been to one of these workshops. They are often expensive. The one at Duke is very expensive. When I first read about the classes it was from a brochure at Duke and I was instantly drawn to it and turned off at the same time. It looked very interesting but the cost was outrageous. I remember thinking it must be some new age thing geared toward the rich, since the workshop was so expensive and insurance didn’t cover it.
A year or so later, I started learning about mindfulness on my own. I came across books by Jon Kabat-Zinn. He talked about how this is something anyone could do and it didn’t have to cost anything. I knew then MBSR wasn’t meant to be simply for the rich. I’ve read his book Mindfulness for Beginners, it is very good. I’ve also read parts of some of his other books. (they are always on hold at the library and I haven’t been able to finish them before I had to take them back…..so I’ll get back to them…but there are more…Full Catastrophe Living, Wherever You Go There You Are, Coming to Our Senses.….) I’ve read books by other authors, I’ve read a lot about Mindfulness Based Stress Reduction on the internet and there are a lot of YouTube videos on the subject, many with Jon Kabat-Zinn speaking. You can even hear some of his books read through YouTube, I found that interesting. I am reading the book called Mindfulness: An Eight-Week Plan for Finding Peace in a Frantic World, by Mark Williams and Danny Penman with the Foreward by Jon Kabat-Zinn. This book is much like a journey through one of the workshops. I’m only on week two, but it is very interesting. It has deepened my mindfulness practice and awareness. I had much more of just an informal practice before, I now have a formal and informal practice. I take a certain amount of time to formally practice mindfulness, and I informally practice it throughout the day. Before, I would kind of formally practice it occasionally, but now, I have a set time that I practice. I also had a very hard time meditating before. Now I’m much more gentle with myself. I don’t feel I have to do it right. Ya know, I don’t think anyone really, does it “right”. It’s right for you. (or for them) It is will change as you change. So for now, I must have guided meditation. Perhaps I always will. Both of the books I mention above have guided meditations included with them. There are also guided meditations on YouTube. (luckily I can now understand recordings through my blue-tooth to my Cochlear Implants, meditation would be much harder for me if I couldn’t do guided meditation).
I realize this may sound like I’m crazy about Jon Kabat-Zinn, not really. I wanted to learn more from the person who started the program first, but I have found wonderful information from books that were not by him. Also you do not have to practice MBSR to practice Mindfulness. It’s all mainly just mindfulness, I think the MBSR books are simply written more therapeutic and less spiritual. Many of the spiritual books that I found that talk about mindfulness kind of got on my nerves a little. Yes, it’s comes out of Buddhism, but it’s not about religion. It’s simply a good thing, and I’m sure if you looked in other places you’d find something like it, maybe not as detailed, or called the same thing. Plus, Buddhism been around a very long time, so they got a jump on it I guess. haha
This is my story so far with mindfulness. There is a Mindfulness Based Stress Reduction program offered here through Carolinas Health Care (where hubby works now) that is much more affordable. (no he does not get a discount) They will even work with people who cannot afford the class, they don’t want anyone to feel they cannot attend because of funds. We are thinking about attending the workshop in the Spring. If we do I will certainly blog about the experience.
This concludes my Feeling Better Series. Hopefully, it will not end my feeling better.
I will now return to my regularly scheduled program…..