Today’s Prompt: My Dream Day. Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen?
My dream days now are much different from they used to be.
Today I take one day at a time. If I have a good day, I try to make the most of it.
The other day is a good example. I woke up not feeling the greatest, but I rested, and in the afternoon it was nice and warm and I felt better. So I asked my husband if we could take a ride that afternoon. (I’m a very lucky person, my husband works at home and can work flexible hours.) We decided it would be a nice day to take an afternoon ride with the top off my little yellow VW bug. (even though I can no longer drive, we decided to keep my car as the family car because it gives me such joy.) We went for a ride by the lake, and I saw a huge hawk which flew very close to the car. It was a beautiful sight. We drove through a little town and had a drink and snack and came home. I got a bit too hot and we had to put the top up and turn the air on, but it was a lovely afternoon. I didn’t feel well on the way home, but I hated for our afternoon to end.
Later, after we got home and I rested a bit, I was delighted that I felt better and was able to help with dinner. Something I so rarely get to do, and I love to cook. This day I was able to make nearly the entire meal with minimal help. A good day indeed.
So this was a wonderful day. A “dream” day.
photo from Hilton Garden Inn, Kitty Hawk, NC
It doesn’t have to be the perfect “dream” day to make me happy. However, I still dream of going to the beach with my husband, I love the ocean. Smelling sea air, feeling the ocean breeze and the warmth of the sun on my face, having long walks on the shore, and sitting on a porch reading as the sun disappears over the horizon. Eating fresh seafood caught straight from the ocean, and return to our place with naughtiness on our minds… Hopefully, days like that will happen again. However, if they don’t, we are very determined to live every good day to the fullest.
Who knows on my next good day, it may be a day he has off, and we can actually take a picnic down to that lake, and take a little walk. It may not be the ocean, but it would be a pretty body of water (and hubby loves the woods more than sand I think.)
I may be having a rough time with things right now, so I think it’s even more important to make sure to acknowledge every good moment, and celebrate every day…no matter if it’s a perfect “dream day” or not.
Do I assume my necessities are taken care of, like food, water, shelter…ect? Do I assume I have my husband and my pets? Because if I need all of that, then there goes the 10 things right there!
I was once asked, “You were stranded on a desert island, you were allowed to take all your necessities, you forgot one important item, what would you freak out about?” My first thought….”I hope it wasn’t my toothbrush!” Strange thing, if I’m stuck and could only brush or floss, I’d floss. so what was I thinking? Take care of those gums! Silly girl! I guess I should have said, drinkable water, or something smart like that, but I kind of assume you could find that somewhere. Am I naive?
So for this question, I’m going to assume I have everything that is necessary for life….I mean to sustain life. And all my medications and such, including my hearing aid, and glasses. But only list those things I feel I couldn’t live without, even though technically I could. (and I’m not including my loved ones, or my dental hygiene products, we know how I feel about that, I’m going to assume those are all included, this wouldn’t be much fun if all you read was a bunch of list about, oh I’d take my husband, my cat, my son……)….So let’s have more fun than that. Yes I think I’ll be listing more, what semi-luxuries could I not live without! (Please Note! The Main thing in my life I could not LIVE without is my HUSBAND! But anyone who knows anything about me, knows that!!)
I said no particular order…but this one is NUMBER ONE!! Massages from Kelly! She has literally save me in many ways! I honestly believe I would have had hip surgery again if it wasn’t for her, and I think my headaches, and neck pain would be much, much worse. When we moved to Durham, I had to give up a wonderful massage therapist I was seeing because the drive was just too hard on me. I went for a long time with no massages. Then I decided to surprise my husband with a massage as a thank you gift for the amazing things he does for me. We randomly found this place and randomly found Kelly. She has researched my conditions, has worked with me, and come when I’ve needed. She has gone way beyond what is expected of a massage therapist, and their prices are very reasonable. I could not live without Kelly.
Hot Baths – often with Epsom Salts.
Ice Packs – for those really bad headaches
My emergency pack for when I have a Meniere’s Vertigo attack.- (filled with bottles of water, wash cloths, plastic bags, emergency meds, a card explaining what is happening….)
My cell phone for emergencies. – (we must be in a place where I have reception, and I can charge my phone, and I have the charger…no loop holes here OK?) I can’t talk on the phone any longer, but if I need help, it has an emergency button, or I can push one button and call my husband.
My computer, and a way to power it and hook it up to a network, and anything it needs with high-speed internet. (yes, I’m being thorough there, I’ve seen too many movies where people make a wish like, I want a computer, then have no way to run it.) – I must have access to the internet. all my friends are in my computer. : )
Monkey, Monkey, Monkey – or just Monkey to his friends. Yes I have a stuffed animal who calms me when the Intracranial Hypertension or Meniere’s or pain from any of my chronic conditions – migraines, pelvic pain, GI issues….ect…. When any of this gets too much. Monkey is there to dry my tears to hold my head. to be a neck pillow, to just be my Monkey.
Peppermint Lotion. – OK, yes we are getting in to my luxuries now. At night my hands and feet get very hot. So I use peppermint lotion to cool them off, it helps me go to sleep.
Burt’s Bees Lip Balm….or possibly a different lip balm that has peppermint, I don’t really like that Burt’s Bees sold out to Clorox…ewww, but they are still made here in Durham, but they aren’t guaranteed gluten free any longer. However, I had a stock pile, so I think mine are still from the old manufacturing practices….anyone know of a good peppermint lip balm that is all natural and gluten free? Oh but back to why this is a necessity…..I use it every night before I sleep, my lips are hot and dry, and I cannot fall asleep with them feeling like that, I just can’t…so I must have a peppermint lip balm.
Vick’s Mentholatum Vapor Rub – oh, yes I know this is an odd one. But again, in my go to sleep routine. I have a hard time with post nasal drip. I will start coughing in my sleep, and making little hacking noises. If I put a little of this under my nose, it usually takes care of it. It opens my nasal passages and no more drip. If I still have it, I take a Benedryl, and it’s all gone. But it’s wonderful that this makes it so I don’t have to take another pill a lot of the time.
You know I thought I’d have trouble with 10….but I could go on….however, I think I’d be going into the territory I said I wouldn’t.
Oh NO! I didn’t mention any of my art supplies. I could go NO WHERE without a drawing pad and pens!!! NO WHERE!!! What to leave off???? Or do I assume that were in with the necessities of life? They would be for me you know?
Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.
Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer. What can I offer. I can’t even hear them to talk to them. I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests? I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!
This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!
I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!
I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.! I was so busy….I didn’t think it would end…
After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.
I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece. But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.
Now I’m falling apart….and I’m angry at myself about it!!!?????
I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad. I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me! I’m angry I can’t lose weight….I’m MAD AS HELL!
I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that. However, I know me, and I will. I’ll get it together, and get myself another lease on life. Life is good.
I have such a good husband. It can’t be all bad. I must think of the good days.
Today’s prompt, Theme song. Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?
I happen to be losing my hearing due to Meniere’s Disease. So music is very hard for me. I can’t really hear it even with my hearing aid, sounds very tinny. However, I have tinnitus all the time. At this time I’m deaf in one ear, and have fluctuating loss in the other ear, the other day I was having a particularly low hearing day. Deciding my hearing aid really wasn’t doing any good, I decided to just leave it out. That day, I read this prompt. I thought, I couldn’t have a song. Then I thought, but even when I’m deaf I will hear sounds all the time. NO, they won’t be sounds I want to hear, but I will hear sounds.
I talked with a friend of mine, Vincent Morrison, who is a sound engineer. He agreed to help me record something similar to what I hear every day. Please know, my tinnitus changes A LOT. It varies constantly. But these sounds always seem to be around. We did put in some of the startling sounds that just come out of no where that scare me. We didn’t make it as loud as it can be, I did want people to be able to listen to it. I wanted to represent that my tinnitus can be softer, a medium tone, and I would say deafening…but that would be silly wouldn’t it?
So on a better hearing day, my dear friend came over and he tried his best. I must admit I’m not the best person at describing sounds. I am so touched to have this recorded. Trying so long and so hard to explain just a little of what I hear has been so hard….this is my song.
“My Songs of Silence” – sound recording by Vincent Morrison
**warning to readers….this is a graphic letter. Things I really wish someone would have told me and helped me with, some may be offended by the frankness. There may be some major mistakes in the writing, I tried to read it over, but just couldn’t.
Dear 16 year old me.
Hi Wendy….You won’t believe it, but I am now almost 50 years old.
I know you are confused. I know it’s hard to believe that I could be writing you from the future, but please just sit back and listen. I hope to help make these coming times just a little bit easier. Please know, I love you, with all my heart. You will go through times that you don’t like yourself very much, but know you will. I’m just hoping you can start a bit sooner.
Recently you have been very depressed, and confused. Some days you are very happy, a bit euphoric even, and other days you don’t think you can carry on. Everyone thinks you are going though normal teenage hormones, just growing up. You are, but you are also dealing with a bit more. You need to make someone listen. Your mother has always been your best advocate. Sit down with her, talk honestly. Tell her just how depressed you have been and that you need to see a mental health professional. I’ll be blunt, you have Bipolar disorder. Don’t worry, you can be treated. But hopefully, you can catch this much earlier than I did the first time around. In my time line you went through many hard years and many heart breaks. You still live with the fall out from those times. If you can get help now perhaps your life can go much smoother. (much easier.)
If you can’t, there is one thing I suggest…STRONGLY. Be careful with your sex life. You will feel, once you are “soiled”, it isn’t worth the fight. It is. YOU ARE! You will lose your self esteem. You will lose so much. When you get into therapy, finally, you will have a good therapist, but she will not understand. She will acknowledge your past problems with abuse and see you think a man will only care if you give yourself to him. She will say. Sex is ok, but only if you really want to do it. You will often feel that you really want to do it. Please Wait. Wait many times. Wait until the relationship is so much more. Do not jump into a sexual relationship until the relationship is more than just sex. Please take this more seriously than you can believe. It will change your life!!!
Stay close to your mother. Give her a break much more often than you do. Take her off the pedestal. She can’t read your mind, STOP being so passive aggressive. It carries on to other relationships and you don’t need that. You lose her much too early. She encourages you and stays by your side through everything, but unfortunately she doesn’t live to see you completely stable. Savor the years you have. You will be so very close, but you do put her through many worries. Try to lessen those for both of you.
You will start to have some health issues. Hearing issues, vertigo….you think you are having food poison many times…there are many breaks between these sicknesses. You are heading toward a hard fight with a hearing disorder that will cause a lot of balance issues. There really isn’t anything they could do if you found out earlier. So don’t sweat they you don’t find out until later. But if you find out earlier, it might help you in your career.
Dare to be braver. Work harder on your art if you REALLY want to. Don’t be so scared to fail. You will only have a few years to be able to work at this. So if you fail, it’s not a big deal. But if you succeed, and I really think you could, think of how you would feel about you! I believe in you. Looking back, you could have done so much more. Work on your muse! Find what inspires you the most! (oh and in college…start out as an Art Major. add in Art Education, but don’t waste time, if you do you will run out of financial aid before you know it and will not get the education you deserve.
You will have some health issues that change your life….so you change your life to go along with it. You still have a good life. You have a wonderful life, even with everything that you go through, you find a way to make your life meaningful.
You do meet the most wonderful man, and have a joyous life with him…but it won’t happen until you are in your late 30’s, you marry at 41. Do not worry. It happens. Don’t fret. And don’t think there is something wrong with you. Focus on your happiness. This man will stand beside you through all your health issues. You will have a better relationship than you ever thought imaginable. He is worth waiting for.
Focus on YOU.
Study things you want to learn.
Dive into your ART.
Study Yoga…you will love it.
Become as healthy as you can, you will need it later.
Take care of you…And trust your heart…don’t listen to those who are just looking for fun for the moment.
Hopefully, if you listen to this, and get treated early, you will have an easier life.
Don’t take things so seriously….however, when you believe in something, don’t let others pull you away from your beliefs. In that same vein….do not get too caught up in other people’s beliefs without really looking into them. Make sure they are what you believe deep in your heart, and the that the facts are sound.
Question everything.
Love Deep.
Laugh Often.
And Cry Less.
Look for Beauty.
And appreciate Life.
From your future self, who hopes things turn out a bit differently.
KEEP CALM AND CARRY ON a poster that was made to during World War II in Britain but was never used. It was to be put up if full-scale invasion happened. It never happened, so the posters were destroyed, well most of them. You can read all about how a poster was found and the Calm-O-Matic was started here http://www.keepcalm-o-matic.co.uk/guide-to-keep-calm/
This prompt is very interesting. We are asked to make a poster of our own, and possibly make it about our own illness. Well, I have so many illnesses, I decided to make it more about a motto.
We all have bad days, and we all have good days, I think we should make sure to not take the good days for granted. Every good day you have, do something you really want to do! That doesn’t mean you have to run off and do something adventurous or over tire yourself. If you really want to just relax and watch a movie, Do It! If you want to sit in the backyard and enjoy the sun, Do It! If you want to go for a ride with your husband and just enjoy being out of the house, as I often do, then do it! All I’m saying is, do not continue to lie in bed on those days when you feel like you could move to the couch. Do not stay on the couch when you feel you could walk outside. If you love to cook, and think you could that night, go for it! Make sure you have a back up in case you feel you are over doing it.
I promise even on those days you do a little too much, and you are a bit more tired or sore the next day, you will feel better that you accomplished something, and felt free for a little while. (if you are as isolated as I often am, you know what I mean by feeling free)
Today’s Prompt is Best conversation I had this week. Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.
I had an entirely different post written for today….then Saturday afternoon Stuart and I were out running errands and decided stop in a fast food restaurant for a drink and a snack. (not the best place for a snack, but dinner was a long way off and we were both hungry!)
We ordered our food, got our drinks and sat at our table. We were just chatting and planning the rest of the day waiting on our fries. An elderly lady who smelled of Channel No. 5 walked up, she was dressed in a floral dress, with a bright sweater, costume jewelry that was stylish many years before I was born, and lipstick that mostly covered her lips. She was delightful!
She smiled broadly and asked, “Are you married?”
I looked at Stuart and smiled, we both shook our heads yes, and answered, “Yes, yes we are.”
“Oh! I thought so! You just look at each other as if you are! My husband and I have been married for 58 years!”
Stuart, “Oh, my! That’s admirable, I hope we can make it that long!”
Me – “How amazing, you look so happy!” “We’ve only been married for 8 1/2 years.”
Dear Lady – “That long?? I thought you just got married the way you look at each other! You look like you are still on your honeymoon!”
We looked at each other and smiled, then looked at her and both agreed, it still feels like we just got married. She was thrilled….and so were we.
there was a bit more gushing, thank you’s and congratulations and she disappeared as mysteriously as she arrived. I never did see her husband, he was behind me. I kept thinking, I wonder what it was about us that made her come up and do that…..now, I keep thinking…I don’t care. I’m so happy for such a chance encounter with such an amazing woman.
For that moment…I was not a sick person. My husband and I were simply sharing a moment, acting as we normally would, and it sparked something so deep in this marvelous woman that she felt compelled to come and tell us how in love we looked. Stuart said that I can never tell him that he doesn’t show me how much he loves me, but I wouldn’t. He does, every day. And on a normal day, we do hold hands, and gaze in each others’ eyes. We laugh with each other, and sneak a quick pinch on the butt….is the honeymoon over….truthfully, we never had a real honeymoon. I can tell you, when we talk about our wedding we still feel like it just happened. We get all mushy about it. I can also tell you, every day I love my husband just a little bit more.
With Meniere’s I have fluctuation hearing loss, with eventual permanent hearing loss.
If you are a regular reader you know my situation, if not I’ll fill you in.
Right now, my left ear has 0% word recognition and cannot be helped with a hearing aid, my right aid has about 80% word recognition with the help of a hearing aid. However, the hearing fluctuates. My hearing fluctuates more with weather changes, and when I have a Meniere’s attack. (to learn more about Meniere’s please see the page above).
One day a few weeks ago I woke up and could barely hear. Every sound sounded like it was coming through a busted speaker. The same went on for 3 days. I admit this had me concerned. When I lost the hearing in my left ear, the majority was lost in just 3 short months. The loss started in this fashion. Sounding like a busted speaker, having a tinny sound. Normally, in my right ear when the hearing fluctuated, it simply dropped, then would return, sometimes not quite all the way, but when it dropped, it was just a bit softer, not this tinny sound. So I was nervous. And I realize, this could still be a sign of potential nerve damage.
However, in about 3 or 4 days, I had a vertigo attack. Classic sign of a Meniere’s attack. Fluctuating hearing, then a vertigo attack, ending in complete exhaustion. When I woke the next day. I could hear again! I was so thrilled. I had a horrible headache, but I could hear. Who knows how long this hearing may last. I decided to do something I rarely do, I took much medication to get my headache under control, and went outside hoping to hear some birds. Sadly I didn’t hear any birds. I was not the right time of the day. But being outside was so nice. I decided to sit on the back porch and enjoy the beautiful spring late afternoon. Soon I was joined by a friend.
Photo courtesy of mr.brown thumb click photo to be taken to his blog.
A huge bumble bee decided I would make a good friend. I was out on the back porch for at leash half an hour possibly more, this lovely bumble bee kept me company the entire time. He would come closer, then go a little bit away. He faced me, then raced away and buzzed right back. I talked to him and told him how beautiful he was and how I was out there hoping to hear things I may not hear much longer. As if he could hear me, he came up right beside my head, I could not only HEAR this beautiful Bumble Bee BUZZ, I felt it!! He then came around in front of me and looked at me. I know, this was just by chance, and perhaps because I had on a bright orange shirt. However, no matter how long I live, and no matter if I lose all of my hearing, I will never forget the day I heard a bee buzz.
The previous Haiku’s all represent health issues I deal with. The first, a little joke about having a brain disorder, Intracranial Hypertension. The second, a challenge about losing my hearing late in life. Of course, anyone who is hearing impaired may have the same struggle, I do not know. And lastly. this haiku talks a bit about living with both Intracranial Hypertension, and Meniere’s. Each cause me to have vertigo and other visual disturbances.
This is on the ugly side. Probably a post with too much information for some. It’s very emotional, and I’m not exactly sure where it will all end…
"Turmoil" computer graphic wendy holcombe - 2012
I’ve noticed a lot since I have been diagnosed with Intracranial Hypertension that my emotions are a bit out of whack, and I haven’t had the best filter on my mouth. I cry a lot of the time, and try to be as strong as possible. I feel alone and keep reaching out trying to ask for help, but just keep alienating people.
I continue to help others if they need to talk, if they need a shoulder…but my shoulders are just so soggy lately. There are days I feel I have it all under control, my headaches are better, my vision is better, I’m getting around a bit better, so why am I a mess? Why can’t I relate to people like I normally do?
I asked the doctor, is it the condition, the medication side effects, one medication mixing with other medication, do we need to adjust my bipolar medication??? I was told, “Yes. Maybe. It’s complicated.” then I was told, “I’m sorry your condition is not easily fixed.”
Well that’s all well and good, but I’m losing everyone around me. I feel like I’m going insane. I’m so alone, and scared. It’s getting to the point that the only one who will put up with me is my husband. At least I think I do remember to tell him how much I love and appreciate him.
Then the terrors start. I’m terrified of being alone, not all the time, just some of the time. It’s more than that, I’m afraid of being without my husband. (again, not all the time, sometimes I feel very capable, then other times…Panic!!!) What if something happens and he’s not here and I have vertigo and can’t stand up, and can’t stop throwing up, and …… panic, panic….what if I’m upstairs and he’s gone and I can’t go downstairs and my blood sugar is too low and I need to eat, but can’t get down the stairs safely….panic, panic….what if….I Fall??…..what if…..OH remember to BREATHE! There are just so many things he does for me, he has no idea how much easier he makes my life. Often just by being here so I know if I need him, he’s here.
So, what do we do first…how do we sort this out? Already 2 medication changes. Soon another. This week I see my Psychiatrist to see if there is anything we need to change there. Is there any medication that is working against anything. Should we add something to help ease some of this? Will it help?
Does anyone really have any idea?
I do have bipolar I disorder, I know what it feels to not be myself. I know I’m not going through a depressive or manic swing, but I know I’m not myself, and that tells me I need to back away. Unfortunately, I wasn’t listening to that little voice when it first started screaming at me a few weeks ago.
Will I have any friends left at the end of this. I admit I didn’t have many at the beginning. Having a chronic illness for this long is not good for keeping good relationships. No one’s fault really, it’s just very hard. But I’d like to stop alienating the few people I do have supporting me.
Right now, I plan to finish this months writing challenge then take a Hiatus from my blog for a while and try to get this straightened out. I don’t feel like I’m myself lately, and I don’t want to be putting words out there that aren’t really want I want to say.
I hope those of you who have been on the confusing end of my emotions recently can find a way to understand and forgive. After the 1st of May, I plan to just take a break, I hope to see you soon.
Picnic with Ants 