Drawing by Ayla Probst (10 years old) A surprise gift in the mail for me today.
Today was a good day!
I’m sitting here after a glorious day. A day most people take for granted.
This week we celebrate Thanksgiving in the US. It is a time to reflect and be thankful.
Today I am thankful for good days!
Most people wake up in the morning, and simply start their day, without a thought about it. The first thing I do when I wake up is take stock of how I feel, and decide if I can make it to the bathroom alone or if I need to call for help. Today I awoke to find myself feeling…good…I mean really good. This is so unusual lately I was surprised, and very grateful because Stuart wasn’t home. I got up, did my morning routine, with aw. As I walked down the stairs I realized I hadn’t been downstairs since last Thursday, and that wasn’t for long.
I had a little to eat and decided to sit out on the back porch and enjoy the sun. Today was a beautiful day!
Stuart was home soon and surprised to find me outside, and feeling so good. Not just OK, but good. I wanted to get out of the house, but wanted to make sure I didn’t over do it again. We decided to take a drive, but right before we left I started to feel a little off. Head a bit swimmy, so I decided to take some medication, just in case. So we jumped in the Bug and put the top down. We drove to a town near by, stopped at a drive in fast food restaurant, and had a treat. We came home and I decided I still had some energy to spare, so we cut back the dead flowers, and I cut the herbs I could save after the last frost and hung them to dry.
Stuart went to the mailbox and I was so tickled to find a card from one of my favorite people. A friend of mine’s daughter, Ayla, she’s 10 years old. They live in Tucson so I rarely get to see them, but for every occasion she sends me a card, normally with a drawing included. She knows how much I treasure her drawings. You can see her drawing at the top of the post. Yes, that is a penguin in the hot air balloon. Ayla, loves penguins. Isn’t she the best?
Yes, you are right, it was last Monday that I felt so good. So what is it about Mondays? It’s not like my weekends are any different from every other day. I said to Stuart, “So, am I just going to feel good on Mondays?” He said, “No, you’ll feel good tomorrow, you have an appointment with Dr. Kaylie, and you’ll feel good on the 5th, you have an appointment with Dr. Gray.” I just sighed, knowing he was probably right.
Isn’t that often the way? We can feel like crap for the longest time, then the day we go see the doctor, we feel better.
I hate to even say this, but I kind of wish I would feel bad tomorrow, so my doctor could see what I’m going through. *cringe* I know I really shouldn’t say that out loud…or even write it.
Here’s to never taking a good day for granted, and enjoying the small things.
I decided that was enough. I’m not going to push it.
This PFAM carnival is hosted by FibroDAZE, and her prompt is –” when you have made some sort of peace and are coping with the chronic illnesses you do have and “life” throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?”
Well, this is a doozy of a topic isn’t it?
How many of us have been diagnosed with something chronic, only to have another chronic illness added on to it, then another..then another….??? (I have a whole list, just look at the Page titled My Ants that Bite.)
This has happened so many times to me now I’m usually relieved to be given a name to something I knew was there. When I got the Meniere’s diagnosis, it was scary, but it was almost liberating. I felt validated. No longer was I dealing with just a bunch of symptoms, it had a name. (I have a few friends who have an illness with no diagnosis. This is much harder to deal with, I think, than those of us who have a diagnosis (or many diagnoses).
I had a new diagnosis added on to my list in March, I also went through a 5 month spell of having a reprieve from one of my most debilitating illnesses only to have a relapse about 5 months ago. How have I handled this?
Truthfully, I cried, I bitched, I was devastated, I collapsed in my husbands arms, then I took a deep breath, pulled myself together and reached out.
I dove into my blog and called on my friends here who have been with me through the ups and downs, I gathered them around me like a nice warm quilt and I let it all out. They listened, and supported me. They offered advice when asked, comfort when needed, and a swift kick in the butt when I was wallowing too much. : ) I’ve been very lucky here to find such a supportive group of people who really “get it”.
I am a strong believer is knowing everything I can about what is going on with my body, so I research, and I find more people who have experience with this and compare notes. I take what I think will help me, and leave the rest. (this is tricky, but there are so many people out there trying to take advantage of desperate people with chronic illnesses, we have to be careful.)
I also see a therapist who specializes in helping people deal with chronic or debilitating illnesses. My husband and I see her together, this has helped us so much, I just can’t begin to say how valuable this has been to us.
My advice?
Digest: First take time to absorb the information, don’t let it overwhelm you.
Think: How is this going to change my life? Can knowing about this make it better? (my new diagnosis in March was Fructose Malabsorption, by changing my diet, I am able to make things better.)
Seek: Look for others who have similar issues and compare notes, learn from others who have been dealing with this for a longer time. Look for as much information on the subject that you can. The more you know the more prepared you will be to handle what comes your way.
Build: A strong support system to help you with this new challenge.
Re-evaluate: Is your life going to change? What will this mean? Do I need to make a different plan for dealing with things? Will my diet change? will my ability to do things change? ….
Make a plan: This may take a while, depending on what your new diagnosis is, or in my case how severe my relapse is, a plan is needed so we won’t feel out of control. Again, reach out and ask other’s how they handle certain situations.
Support: I know I mentioned this before, but I believe this is one of the most crucial aspects of dealing with a chronic illness. We need support. Do not hesitate to get professional support when needed.
If needed, get a second opinion.
After a long battle with myself, fighting every diagnosis, refusing to believe I couldn’t just be fixed, I realized that my life wasn’t going to turn out like I planned. Things would have to change, and I needed to let go of some of those old expectations. No, my life isn’t what I expected, so I’m changing my expectations. This is a fairly new idea for me, but one I’m clinging to and repeat often. Not what I expected? Expect something else!
Now if things come up it’s much easier for me to change accordingly. This was not an easy thing to do, and I still get stuck, and have set backs and pity parties…but it’s easier than it used to be.
Every day I try to say something I’m grateful for in my life. Some days I say the same thing as I did the day before and the day before…perhaps I can only think of that one thing, or that one thing is very special at that moment, but I can always think of at least one thing.
Lastly, always remember, you are not defined by your illnesses!
What makes the world go round, and round, and round…I don’t really care I just want it to stop! Please…oh please! (I’m asking very nicely…please.)
Spinning world. Photo Manipulation by W. Holcombe
Since Wednesday I’ve had almost constant vertigo. On Wednesday, I had two vertigo attacks. On Thursday morning, I woke up about 6:30am spinning. I was dreaming, and in my dream things started to spin, I woke up and it was still spinning, not a good way to start the day! On Friday, I had a very severe headache with vertigo for most of the day. Today, I woke up around 8:30am, again, spinning.
This has been a turbulent week. Luckily, most of these attacks weren’t the gut retching kind. Most of the time, I’ve just had to keep my head very still, and things were bearable, but if I move, even fractionally, the world spins. Today, it has lasted all day. For the first 5 hours of the day, the only relief I had was when I laid on my side, with my head very still. If I moved slightly the world spun out of control. While lying down it was just a bit wobbly. Unfortunately, I also had some GI issues today, and those 10 feet from my bed to the toilet were a harrowing experience. Finally, things have calmed down a bit, but still if I move my head, the world spins.
I see Dr. Kaylie, my Otolaryngologist and Vestibular Specialist, on Tuesday. We have to discuss different treatments, including having the endolymphatic enhancement surgery on my left ear, or streptomycin injections (to kill the balance nerve) I can’t stay like this. My husband is looking for a new job, he can’t be afraid to leave me alone. I can’t be terrified to be left alone. However, it will be hard to undergo an expensive treatment right now. umm..hubby unemployed, COBRA for insurance. Not only are the COBRA premiums outrageous, but we still have to pay 30% of any procedure. I hate that healthcare is so unfair. When we get our bills from the hospital or doctor, it has the cost, then the deduction because we have Blue Cross, then the amount the insurance covers, then what we pay. (often just the co-pay, unless it’s something special, like surgery.) If we were charged the deductible amount, like Blue Cross is, we could pay for it without insurance, the premiums from COBRA are so high, it would cost less if we could pay that way. Our healthcare system sucks!
A little story about why Stuart and I got married when we did…. Stuart and I were engaged, but we hadn’t set a date. His mother had breast cancer, she had been in remission, but unfortunately, it returned. We didn’t want the stress of our wedding making things harder for her. We wanted to wait until she felt well enough to enjoy it. Unfortunately, the cancer spread, and she died before feeling better. (yes, if we had known this was a possibility, we would have gotten married sooner, so she could be there….hind sight.) The week she died, I found out I’d be losing my health insurance in 3 months. So we planned a wedding, fast. We got married on Stuart’s parent’s anniversary. In a way it was nice that we had something so joyful to plan and think about right after Stuart’s mother’s passing, but in an ideal world, we would have put more time between the two events.
Yes, you could technically say, that Stuart and I got married so that I could have health insurance. That’s just not right. We should not have been forced to choose our wedding date based on health insurance. (It is a big joke in the family though that we are the only people they know who can plan a wedding in less than 3 months for less than $2000! And it was a nice wedding too. Small, but very beautiful, and very, very special.) Perhaps I’ll tell that whole story at some point. My point right now is that NO ONE should have to do without health care because they don’t have health insurance. I wonder how many people get married so their spouse can have insurance? Or how many people stay in a job they hate so they or their family will have health insurance? The priorities of our government is just so skewed.
*Jumping off of my soapbox now*
I have a big request for any of you who have to go through these attacks alone: Please give me any tips you have on how you do it? I’ve done it in the past, but I used to have clues that an attack was coming, so I could get prepared. Wet cloth, empty buckets (or at least to the toilet)…. Now it happens very suddenly, no warning! Bam, I’m spinning. Today I had the hardest time just reaching in my night stand to get my medicine. So, any advice? How do you do this alone?
**this post was started on Wednesday evening, finished Thursday morning**
Yes, I had a great day earlier this week…Monday I think it was, things are all a blur now, I had a beautiful day.
After my beautiful day, I hurt so terribly that night. Every muscle, and joint ached. I took a very hot bath with Epsom Salts, like my massage therapist tells me too. It helped, but then I got all woosey and dizzy when I got out of the tub. Change in temperatures was too much for my head. (I tried to do it gradually, but it didn’t work out.) Luckily the dizziness subsided, but I had a very hard time sleeping because of the pain.
The next day was an in the bed day. Just one big ache, and the tinnitus was yelling! So I just relaxed, was on the computer for a while, read for a while, and drew for a while…made a lovely butterfly, I’ll share it soon.
Today, I awoke feeling better. I got up, went downstairs and started to make my own breakfast. Then I started to feel a bit unsteady and turned it over to Stuart, didn’t think I should be using the stove.
Twice today I had an attack! However, they didn’t escalate to the OMG I’m going to die while retching my guts out, type of attack. They both came on fast, and we worked fast getting the meds in me. Stuart got everything prepared, but it calmed down. On both occasions, my head started to spin, I got very hot, and my stomach started to do flip-flops. I do remember saying earlier in the day that I felt like I had a nervous stomach, Stuart asked what that meant. I explained, “I feel like I used to when I was about to take a big test, or a date was late picking me up…that kind of thing.” He smiled at the date thing, but hey, I’ve being stood up is a horrible feeling. However, that passed, I felt alright. Then a bit later, I was oh so sick. I wonder if the “nervous” stomach was a clue? I’ll try to pay more attention to the next time that happens.
**added to post Thursday morning** I didn’t have to wait long. I tried to get to sleep a little early last night, finally around midnight I drifted off, and about 6:30am I was dreaming I was spinning, and woke up to the world in a full spin. This attack was already in full-blown nastiness before I could move my head to get meds in me. It didn’t last long, thank goodness. And I will spare you all the details this time. One thing that continues to linger with me about it, is my headache. I slept a few hours, but my head hurts so much. I finally felt I could keep something down long to eat a little, just so I could take a pain pill. Right now, my head still hurts, and my stomach hurts….what a great way to start the day.
I don’t understand it. 3 attacks in less than 24 hours? It’s such a turn around from just a few months ago. Do I continue to try to get back to that with Dr. Gray? Or do I push for a different treatment? But if I get a different treatment, how does that affect my low cerebrospinal fluid pressure? So many questions, and some how, I don’t think I’m going to get many straight answers. I see Dr. Kaylie next week, and Dr. Gray on Dec. 5th, we’ll see what happens. I think I’m going to get a lot of , “it’s up to you”, but I really need some advice. I hope they won’t let me down, and I really hope they will work together on this. What will I do if one suggest one treatment and the other suggest something else? *OK, my mind is officially off-line right now*
I planned to do a post on how to better prepare ourselves for the holidays. You know, trying to reduce the stress of the season. I came up with a fool-proof plan for me. I’m just not going to do it this year. Yes, Stuart and I may do a little bit here at home just for us, but for the most part, I’m just saying “No”.
I can’t go to parties right now. The noise makes enjoying myself impossible, and I feel very isolated. Since Stuart just lost his job, we can’t give presents like we normally do. We really need to be on a tight budget, who knows how long this will last. Hopefully, not long, but we need to be prepared. Plus, I simply don’t have the energy to do it this year. I’m also terrified of having an attack at someone’s party. Can you imagine?
I do think I will send out cards. I want to send some people personalized letters that explain why I’m AWOL this holiday season. Explain more about my illness, and stuff like that. I think a personal letter will help people understand just how personal this is, and how it personally affects our relationship. (another tip from Toni Bernhard, from her blog in Psychology Today, “Turning Straw Into Gold”.)
I still really need to work on learning how to know when I’m doing too much. I don’t like having the fall out after a good day. My friend Rita, over at Soul’s Comfort Corner , gave her secret, “The only thing that helps me is using a timer. Otherwise when I am having a good day I inevitably overdo it. If I limit my sessions to 45-60 minutes and spread them out over the day I can “usually” do something almost every day even if I am only good for one session on a bad day…..” What a great idea! I’ll be trying this one, as soon as I feel I can move.
I hope everyone has a wonderful holiday season. I’ve read a few articles that talk about how to make it easier on people with chronic illnesses. The biggest one is to know how to limit yourself. You don’t have to be super person, do what you can, and don’t beat yourself up when you can’t do something. There are lot’s of hints, but I felt that was the biggest thing. Take your time, and enjoy yourself, don’t push yourself too hard. Wouldn’t you rather do less and really enjoy it, or do too much and be in agony?
We all know I have a very hard time with knowing how to pace myself, so I’m just bowing out this year. We don’t do a lot anyway, we don’t have family close, or a close family, so this won’t be that hard. I hope. I really hope I don’t get depressed because I feel left out. I want to feel joy that my friends can have a good time and enjoy themselves, even if I can’t be there too. (of course, without me there, will they really be able to have a good time??) hahahaha
Seriously, I’ve been reading Toni Bernhard’s book, How to Be Sick, and she talks about feeling joy in the joy of others. This is something I really want to work on. She mentions how easy it is for our emotions to turn to envy, and I know I feel that way towards some people, and some things. I want to stop that, and feel joy that others have the opportunity to do things I can’t. (Thinking, this will merit its own post.)
Today was absolutely beautiful, and I woke up without a headache…(meaning a little bit of a headache, like normal, but no where near like I’ve been having lately…yes, I always have a headache, sometimes it’s just much, much worse than other days.)
The weather was gorgeous, in the low 70’s (F), with a slight breeze. The leaves are starting to fall off the trees. I took my lunch out on the back porch and enjoyed the sun and warmth. There was a gust of wind and a flurry of leaves blew over head, it reminded me of a scene from Winnie the Pooh’s Blustery Day, however, my day was not that blustery. I had a giggle.
We decided since I was having such a good day, we would go somewhere. We went to the little mall near our place, and bought Stuart 2 new ties for him to wear to interviews. They are a bit bold, and show more of his personality. I think they show confidence! I hope the people he interviews with also thinks so. (today was Stuart’s last day of work, just a couple of hours really, turned in his computer and told them where he left off. The owner said he felt so bad, but he had realized if they had one bad month they would be in trouble. They have decided to put the project Stuart was working on, on hold…so no reason for Stuart to be there. Stuart is so great about it. I think it’s the Buddhist in him, I’m not as philosophical…but I’m trying.)
Today, we didn’t think too much about that! We walked the mall, window shopping. Then we needed to go by Wal-Mart to pick up a couple of things, yes, I don’t really like shopping at Wal-Mart either but it’s 1 mile from our house, so convenience sometimes wins. Unfortunately, I really used up most my energy in the mall, and shouldn’t have gone to Wal-Mart. We stayed there much longer than I should have. By the time I got home, things were spinning a bit, especially if I moved my head too fast. I bent down to feel the dog, and the world when Whoosh! I’ve been lying down since then.
I had a great day! Lived it to the fullest. (yes, going to the store is living it up for me.) However, I really need to learn where my cut off point is. I push myself beyond my limit way too often. If I feel good, I take advantage of it. Hopefully, I won’t be paying for it tomorrow.
Right now, my hip hurts, my back hurts, my tail bone hurts, my head is starting to hurt (worse), and I’m very off-balance. Think I over did it? Yeah, me too.
So how do you learn what’s enough? Often I don’t feel that tired, or hurt that much, until I stop. Do you know what your limits are?
With the holidays coming up, I really need to figure this out. Right now, I’m thinking, we won’t be going to any parties. We may try to have a few people over to our house We think it would be better in my controlled environment, I can go lie down if I need to. Or I can get away from noise if I need to.
Thanks for any advice.
Think I’ll be posting more about how to handle the holidays soon.
This post is for the Chronic Babe Blog Carnival all about Gratitude.
I’ve been thinking a lot about this lately. Everyone here knows the people I’m grateful for…my dear blogging friends, the friends who have stuck by me…and most of all my precious husband.
I could write an entire blog post on how grateful I am to my husband for all he does, but I think I gush about him enough.
One of the biggest things I’m grateful for is this blog! Picnic with Ants…gives me a place to get out my emotions, to know I’m not alone, to work out problems, to make other’s aware of what my Ant’s are…especially Meniere’s Disease. When I started this blog I was fighting my illnesses tooth and nail. Thanks to my friends on here, I’ve learned to accept them as a part of me. No they don’t define me, but they are a part of me, and I will learn to walk with them. That in no way means I’ve given up, it simply means I accept this time in my life.
This is a safe place for me. A place where I can be myself, and if people don’t like it they don’t have to read it, however, I’ve very grateful for those of you who do.
At times I realize I’m grateful to be in this place I am right now. In a way, yes, I’m grateful for this disease, we call Meniere’s…and my list of other conditions.
I have learned so much during my struggles with chronic illnesses. I’ve always been a compassionate person, but I think I’m more compassionate.
I notice things I didn’t really see before. I’m grateful to my doctors who are trying everything to give me some relief. To the staff at Duke for all the things they do that I don’t even see. I’m grateful for the orderly who was so kind to me while wheeling me to the recovery room, and stopped by later just to make sure I was alright. I’m grateful to the guy at my grocery store who knows I’m hearing impaired and will make sure he looks straight at me when he talks and enunciates his words so I can read his lips if I can’t hear what he’s saying. I’m grateful for the technology that is available today,my computer, my hearing aid…and possibly in the future a cochlear implant. All different technologies, but all help me communicate so much better than I could without them.
I’m also grateful
I can still appreciate the seasons
I can still read and escape in a book.
I can research doctors, illnesses, treatments…just think a few years ago we couldn’t do that as easily as we can now.
I have doctors who don’t mind questions I have, are thrilled that I’ve researched my condition, and who genuinely care.
I have health insurance…and that bothers me, it just shouldn’t matter…but it does.
that things continue to change. One day I may be very depressed and blue, but the next day I may see the sun and find the clouds that were so thick over my head are clearing.
For my dog and cat…especially my dog. She has been with me for 18 years, she’s now 19. A year and 4 months ago we were told she had a very aggressive form of bladder cancer, they couldn’t operate, and she would last at most another year, probably much less. She doesn’t show any signs of slowing down. I guess no one told her she was sick. : )
There is so much in my life I could whine and bitch about…and I do from time to time (more times than I want to admit), but there is so much I’m grateful for…much more than I could list here.
Thanks to Chronic Babe for making me think about all the things I’m grateful for.
I’m feeling better, at least emotionally, than I did during the last few posts. Thanks to all for putting up with me, and showing me such great compassion.
(I have been in touch with my GYN to see about going back on the pill to see if it will help…we’ll see.)
Now, on to Inspiration.
I saw this beautiful poster on someone’s blog…sorry I can’t remember where. So I wrote to the University of New Hampshire to see if they would mind of I printed it here. They were so nice, and gave me their consent.
‘Disability is not a “Brave Struggle” or “Courage in the Face of Adversity”. Disability is an Art. It’s an ingenious way to live.’
How many of us feel this way?
How many times have you been told how brave you are? How much courage you have? Do we have a choice?
But the part that really touched me was “Disability is an Art” – Who would ever think that? “It’s an ingenious way to live.” Wow! what a statement!
Take the time to really think about that. We are disabled, we are art. We have an ingenious way to live.
How many people, including ourselves some times, pity us? Think that we can’t live a fulfilled life? This simply is not true. Remember, we are a work of Art! We have a life no one else does, but it’s ours. It’s up to us to make the most of it. Our life may not be what we expected, but it’s ours, and we have a choice on how to live it.
Another quote I saw recently:
“Have respect for yourself, and patience and compassion. With these, you can handle anything.” ~Jack Kornfield
I want to talk about more than just respect, patience, and compassion for ourselves, I want to talk about showing these to everyone.
My husband and I have talked a lot about how people just don’t seem to respect one another. Just imagine, if we showed respect to everyone we met, and they showed respect to you. This simple show of respect could over come nearly every obstacle. No more road rage, no more bullying, no more yelling at customer service, no more wars (yes, I know that’s a big one, but if everyone respected one another, would there really be wars?)
Even when we respect other’s we often forget to respect ourselves. To show patience and compassion to ourselves. My doctors and friends have told me, many times, to “Give yourself a break.” Finally I listened, and life isn’t as hard any more. I don’t have to do everything. I can ask for help. I don’t have to feel guilty because I can’t do something. I can handle anything. The key word there is “handle”, no I may not be able to do everything by myself, but I can find a way to handle the situation.
Look at some of the things I can do: I can make my husband smile, I can create a work of art, I can appreciate the world around me…I notice more now because I’m not in such a hurry. I don’t get impatient if I have to wait at the store. I realize that the person who is trying to help, usually isn’t the one at fault. I notice all the people who keep our infrastructure running, people we just don’t pay that much attention to. Like the sanitation crew…they work hard, in the heat, cold, rain, snow…. but do they get appreciated? Usually, people just get annoyed with them because they have to drive around them, or they get mad because they were late picking up their garbage. Our mail carrier, our pest control person, the road maintenance crew…they are working hard to keep our lives running smoothly…and often they are not respected, or appreciated.
The season of showing thanks and appreciation is fast approaching, but shouldn’t we be doing this all year-long? A note on my garbage can saying, I appreciate you! Can you imagine how much that would surprise someone? I always wave at the road maintenance crew, and they always look surprised. Once after a big storm that knocked out a lot of the power lines, I took out drinks and snacks for the crew in front of our house, just a little something to tell them, I appreciate you. A soldier in an elevator, I simply said thank you, and I saw his face light up.
I’ve recently received cards, and gifts from people I’ve never met. A thank you card for sending someone a cook book, that I was giving away. A set of Walkie Talkies and a card from someone, just because I needed help, and they had something I could use. A card from a friend who went to Disney World, simply because she knows I love Mickey. And most recently a box of goodies from a fellow blogger, just to help me…and to show she was thinking of me. these people will never know just how much these things have meant to me. How they touched me at a time, I really needed it. All of these things came from people I’ve only come to know through blogging. What a wondrous time we live in, that I can make friends all over the world through this little box sitting on my lap.
When things seem their worst, and I want to just give up, I realize just how many people are pulling for me. How many people, look beyond my disability and appreciate me.
At times I forget these things. The fear envelopes me, the guilt strangles me…but the love, respect, patience, and compassion that I have received from others makes me realize, I must give these to myself as well. They nurture me, teach me to take better care of myself, give myself a break, and stand up for myself. It proves to me that I am a work of ART! My life is ingenious!
My point, that may have been lost somewhere in there:
Take the time to think if you showing yourself the respect, patience and compassion you are entitled to. If not, make a conscious effort to be better about it.
I’m having one of those days that I don’t usually talk about.
Normally, I talk about having Meniere’s Disease. I don’t talk much about my other chronic conditions.
Today, PMDD has taken hold and is screaming at me. It tries to scream at me a lot, but I try so very hard to keep it under control.
For those who don’t know PMDD is Premenstrual Dysphoric Disorder. To see a list of the symptoms here’s a link to an article on Wikipedia http://en.wikipedia.org/wiki/Premenstrual_dysphoric_disorder To sum it up in a very short and nowhere near complete explanation. PMDD is like having very severe PMS from the time of ovulation until after your period starts. So I have about one week a month that I feel ok.
If you read the symptoms you may recognize a few things that I say about myself. Some I just don’t talk about. I just read over the list again, and I have pretty much every symptom on that page.
This month has been especially difficult. One reason, we haven’t been able to find a medication that helps me very much with this, and I don’t want to start a new drug while all the Meniere’s stuff is happening. How would I know if it’s side effects from the meds or Meniere’s symptoms.
I don’t know if being Bi-Polar makes having PMDD worse, or more likely, or what; but it scares me. The emotional upheaval caused by PMDD can make me feel like I’m having Bi-Polar symptoms, and I sure don’t want to go back there.
Today I started my period, over a week and a half early. Very bad cramps, and I want to throw something, just to hear it break!
As you all know, if you’ve ever read my blog before, my husband is a dear sweet man, but today, I don’t want him anywhere near me. He tries to comfort me…and I just cringe. I feel like screaming, “Don’t touch me!!” So far I haven’t, but I have let him know, today is not the best day.
I was trying to do some art work. Thought it might calm me down. As I’m drawing I realize just how guilty I feel about EVERYTHING! It overwhelms me. Then all of a sudden, I just don’t care. I don’t care if I get better. I don’t care if I get worse. I don’t care if I eat, or if I eat right. Stuart asked me something, many times today for some reason, and all I could think was…I just don’t care. What ever.
I feel very apathetic.
I can’t help but feel part of this is also because of everything else that’s going wrong in my life right now. All the treatments for the Meniere’s that just don’t seem to be working. Stuart losing his job, and everything that means. Me feeling so much worse….
Then this.
But you know, I just don’t care. Tomorrow I probably will. But today. Not so much. Sometimes I think I talk a good game. I try to be very strong and positive. And sometimes I wonder how much of it’s true and how much I’m trying to convince myself. The power of positive thinking and all that. Yeah…not today. Today it would just take too much energy to care.
oh, and my head hurts again. Oh joy. *yes there is a lot of sarcasm intended there.*
This is not a pity party, this is a I just don’t give a crap any more party.
There are a few things I just give up about right now.
1 – trying to do this months blogging challenge…not going to happen. Blogging every day right now, too much stress to think about it. Even trying to write posts in advance for them to come out on the right day…it’s too much. Plus, I don’t see the point, why was I trying to do this again? To say, yes I accomplished this? Is it reaching more people? I haven’t had any comments from new people. I have noticed I’m getting more Spam. I’ve been spending so much time trying to keep up with my writing, I haven’t had the time to read other people’s post. I’d rather spend my time keeping up with my friends.
2 – trying to lose weight. Yeah, I feel like I gave this up months ago, and probably did, but while I’m feeling this crappy, and so much of my nutrition is going right through me or coming back up…I’m not going to be too weight conscious. (however, every time I look in the mirror I think…who is this fat person? *sigh*)
Look at the pictures below, one was taken January 2010, the other was taken July 20th, 2011. See how much fuller my face is? And I’ve gained weight since the latest picture was taken. (you do not want to see the rest of my body…I’ve gone from a size 8 to a size 16.) *sigh again* But how do you lose weight while lying in bed, and can’t cook? Plus I have this little thing that keeps whispering in my head..”if you eat something you’ll feel better.” How do I get rid of that?
I know, many of you will say, there isn’t much difference, but in the photo taken in July, I was trying to not show how large I am. I had my head tilted up, to take away my double chin, I had my hair partially on my face…on the left I weight 147lbs. on the right I weighed about 182lbs. I now weight 190lbs. The heaviest I’ve ever been. *I literally sighed again*
Picture of me taken January 2010Photo of me taken July 2011
3 – who ever is holding this vertigo, and headache pain over me…I just want to say…I give up! What ever you want, I give! Just please stop. (Don’t worry my friends, I’m OK, I know it’s just my lot in life right now, a season some might say, it’ll pass, I’ll make sure of it.) I’m learning so much about me, friends, chronic illnesses… I’ve decided to take this time that I’m feeling crappy to just reflect, and reevaluate what is most important to me and possibly change my priorities.) One thing I know for sure, I want to live every day I feel better to the fullest! Live in the moment!
4 – I give up on trying to go to parties, or noisy restaurants, or any place that’s noisy. Let’s just say, I give up on trying to hear in noisy situations, and getting so frustrated, and feeling so isolated because of it. One on One, or Small Groups are better anyway.
Now for an update on how I’m feeling:
Since Wednesday I’ve had a constant feeling of vertigo…no not the major throwing my guts up attack kind, but every time I move my head…Whoosh! And if I close my eyes it feels like I’m moving. Sleep has been very hard. But I did get a few hours last night. If my head would stop hurting I’d probably be able to get more. My head, oh my aching head! My head hurts so much. My neck hurts. It’s hard to turn my head…that’s probably a good thing since it makes me dizzy, but it hurts. (Oh, did I mention it hurts??!! And nothing I’ve taken for it touches the pain.)
I’m having a lot of GI distress for the past few days too. If I were running a fever I’d swear I had the flu…at least I’m not that achy. (except, did I mention my head and neck really hurt? …. yeah, I guess I did.)
I finally realized exactly what was so very different from this past attack than previous ones (yes a few things were different, but I think this is pretty strange.) Normally my vertigo spins clockwise, this time I was spinning counter-clockwise. I remember distinctly how the TV was falling to the left, and the vent on the ceiling was moving to the left. Isn’t that strange? I know it probably doesn’t mean anything, I just thought it was strange.
Anyone else notice how they spin? Clockwise or Counterclockwise. I have a friend with Ramsey Hunt Syndrome and she told me she always spins counterclockwise. (but, I don’ t think she has extreme vertigo attacks like those of us with Meniere’s…but I’m not sure, I’ll have to ask again. However, we all know, even minor vertigo can cause great distress.)
To conclude, many people say to never give up, but when you have a chronic illness you have to realize there are things you simply need to give up. Things are different now. I used to have a very hard time telling people “No”, now I often say “maybe”, and often I have to say “no”. I must decide, is it worth the consequences. Will I feel worse afterward? Will I feel isolated because I can’t hear? Will I be in a safe place if I have an attack? There are many things to think about now, I can’t just say, “sure, I’ll do that”. I have to do what is best for me physically, and mentally. (as some may say, I need to really think about how I’ll use my spoons.)
Stress makes most chronic illnesses worse. Even good stress. I have to remember that, and choose accordingly.
How has having a Chronic Illness changed your priorities?
After posting about my attack on Wednesday, I had an outpouring of people who either commented on the post or emailed me personally to tell me I’m not alone. As comforting as it is to know someone else understands, it’s heartbreaking that there are others who have to go through this too.
I really wish that no one could empathize with me.
One thing about my attacks recently, they don’t last as long as they used to….but it feels like they do. I’ve had attacks last over 12 hours, the last one lasted over 3, the one before that was less than an hour, yet each felt as if they lasted for an eternity.
Angelea from A Day in the Life with Meniere’s said, “The only thing that keeps me hanging on through an attack is that, at least so far, they eventually end within 8-12 hours.” I’m the opposite, every time I have an attack, I’m terrified it won’t end. I know it always has…but what if this time it doesn’t….it’s unimaginable, yet…it fills me with terror. I’ve read of people having vertigo for extended periods of time. Weeks, months, years… indefinitely. Do they always feel like I do during an attack? How do they live? Or are they using the word vertigo loosely? I know it varies in intensity, but all I can think of is the terrifying sensations I get.
Most people who write about their attacks, don’t go into the detail I have. We all know they are horrible, but somehow I wished for my friends that it wasn’t as bad for them. I was even a bit surprised when I heard how much so many of you could relate to everything that was happening to me. (I really wish you couldn’t). We hear each other say, I had a bad attack complete with throwing up for hours….but we normally don’t talk about the rest. Thank you all for sharing your stories with me. People (especially our doctors) really need to understand the torture we go through. I keep wondering if these specialist we see have ever seen an attack. Do they just know what they’ve read, or have they ever experienced anything like it? Or seen a loved one go through it? (I plan to ask my doctor the next time I see him.)
I emailed my doctors. I heard from Dr. Gray already, and unfortunately she is also thinks that although I’ve had some good results with the patching, the results to not stay sustained, and this does not look to be a long-term solution. That was hard to hear, even though I already knew it in my heart. We’re waiting to see what Dr. Kaylie thinks my next move should be. I had good success from the endolymphatic sac surgery on my right ear. I’m almost positive that the majority, if not all, of my attacks since I had the surgery have been from my left ear. So that is a consideration. It’s a rough surgery, and recovery is hard. From what I’ve heard from two other friends their recovery was much worse than mine. So I do know there is a chance that it could be worse next time. However, I haven’t talked to Dr. Kaylie yet, we’ll discuss my options and see what happens.
I’m so confused by all of this though. I’m not sure if we’ll discontinue trying to keep my cerebrospinal fluid regulated. I would think that we’d need to do this. So many questions.
Again, I’m going into this bad time just as the holidays approach. Last year, I had to wait from early November to late January before I had my second set of patches. That was some of my darkest time.
I say so often, that I accept this illness, it is a part of me. But I think a lot of that is what I want to believe. Today, I broke down and just screamed…”I DON’T WANT THIS TO BE HAPPENING TO ME ANY MORE!” I thought it was better. If I could have seen this future in January, I would have spent those months symptom free so differently. I tried to get my life back, to start a future. I spent 30 class hours plus many, many hours outside of class, working to become a foster parent. I started a garden. I bought a car. I bought hearing aids. My life was all falling into place….then it came crashing down.
Now I look back. If I had known all that I was doing was wasting time. We won’t be able to foster. The garden died. I now have a car I may never be able to drive, and I have a hearing aid that sits in a box because my hearing has deteriorated so much in that ear it’s useless. ($2000 for 3 months of use, I don’t think that’s a very good bargain.)
So if I could have peeked into the future, I would have told myself to live every symptom free day to the fullest. Travel. Spend as much time with friends as possible. Go, and do the things you can! Don’t waste a day! And most of all, don’t plan for the future!
So yeah, I guess today I’m having a pity party.
I keep thinking in January, before the patches, I was contemplating suicide. I can’t go back to that. I just can’t. But if I get to the point where I’m having the horrific attacks multiple times a week…often every day…I can’t say that I won’t fall back into that deep dark hole.
No this disease is not me, I do accept that it is part of me….but when it takes over my life and becomes all of me, that, I can’t accept.
I know, I’m jumping the gun a bit, and have some major issues with regrets right now. I haven’t given up, and I’ll keep fighting for me. I’m not fighting the illness (as in not accepting it), but I am fighting for my life. For some balance. For some relief.
Picnic with Ants 