*A Blob In A Bed

As lightning strikes and cackles, silver pain against a mournful deep black sky, rockets flare rapidly from my brain to my chin.  Immediately, I recognize and rationalize the signs; I sigh wearily breathe slowly and finally admit that TMJ has come back to stay for the next few days or  a week. At least I love my two options for dinner, peanut butter and jelly or an American cheese sandwich and tomato soup:

View image | gettyimages.com

 

 

I had a tiny, mild spasm when we had dinner but I was eating the mushiest of foods. A veggie burger that I had to scoop up with a spoon and I didn’t eat the top half of the bun. After that, a small portion of ice cream that I put in the microwave, I was sure I had paid the price for the pain already. Yeah, right. As if fairness counts in this world. I shake my head from side to side.

 

I didn’t “say AHHH” as if I was giving in to a strep test, my mouth was as wide as it could go comfortably (yes, dentists/doctors from all over say I have a child size mouth and face and hands and ring size.) I do remember the tip-toe beginning signs of TMJ and paid heed to them, with further occurrences, I forgot about it and went to sleep and slept well. When I woke up (or did it wake me up?) the first flash of agonizing pain ripped through my brain to my ear and down past my teeth into my wobbly neck.

There is no rhyme or reason for when this happens so I just resign myself to it happening every once in a while and search (I know, I know) for the mouth guard that I should have worn all along. My bad.

 

 

I can’t feel too sorry for myself because I’m the one to blame. I remember yesterday, even before the first pang, opening up the case and finding it empty. I did find it later on, of course, I’ll need to search for it again ( Fibromyalgia Fog) since I forgot where it I found it. I don’t lose things, I just misplace them ( repeatedly.) I look outside at the cold, crystallized window and I find a little comfort in the fact that I can nurse myself back to health today without (a lot of ) help from anyone. (PS I found it and have been wearing it.)

 

I slip back into bed with my five layers of blankets and heating pad, it is the second day and I am still in so much pain that I can’t even go down a flight of stairs to make my cherished mug of coffee. I hate asking for help but this morning I knock on my daughter’s door and ask her to help me. In a second, she goes downstairs to make me coffee and warms my heart. I am so grateful for her.

The coffee barely cheers me up which is unusual. I try to gulp it down quickly but the pain interrupts me. I’m doomed. I’m not allowed to use most pain medication because of my kidneys so I reach for one Tylenol, two.  I automatically click the heating pad that lives beside me on the beige carpet. Please help me soon….

 

I don’t know how other people can get motivated to get dressed and race out of the door when it is below freezing outside. I truly wonder. I don’t believe I was like this when I was young, but then again, I didn’t have Fibromyalgia or Hashimoto’s Thyroiditis.  Maybe I did have it all along but never knew?

 

My mother calls and she hears “the slight off pitch” of my voice.I can never fool her, my mother and my son are the only ones I can’t fool. She zeros in for the kill. “What’s the matter?” she inquires directly bypassing all courtesy. I answer truthfully yet less urgently “I just have a little TMJ thing going on, that’s all.” She sighs, she feels helpless, I totally understand. My 22-year-old son had the flu last week and I certainly felt the same way, “what can I do, do you want something to eat, tomato soup with mashed up crackers? no? NO?!)

Mothers love to mother and when we can’t or when our kids grow up, at first we don’t know what to do. Mothering is our job, one we always will love. Without it, we just feel a little lost. Many people, including myself, ask themselves the question “Who am I now” when our youngest child is in college.

View image | gettyimages.com

I know the feeling. After my daughter’s two wisdom teeth were extracted during a summer holiday and the medication wore off, she got up and gently woke me up at 3 AM. She scowled and said through muddled cotton mouth “it hurts.” For me, as bad as I felt for her, I felt happy I could help her, I could mother her and make her feel better. I didn’t want her to have pain, I wanted to make any type of pain go away.

My daughter and son have left to go out, my husband will be home shortly. I will go down and make my own soft American cheese sandwich and drink some Yoo Hoo, I don’t want to bother my husband who has worked all day. I understand pain, I’ve lived with so many different forms (too numerous to list), I don’t need people near me, I have all of you.

Thanks, Facebook Friends for always being there for me.

View image | gettyimages.com

*DON’T WORRY ABOUT ME, PLEASE.

 

 

 

 

 

 

 

 

 

The Kindness Of Little Things

We read, all the time, about the kindness of strangers, about gratitude and blessings and I am for all of them and more. I did random acts of kindness even before people knew that expression. I started when my little boy was four years old, He is now 22, and has just been accepted into medical school, he still never wants to miss anything.

 

I took my little “farmer”

 

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who always woke up at five am to a diner where we ate blueberry pancakes and drank tinny flavored orange juice. We noticed a very cranky, “mean looking” old woman sitting at the next table. He said she looked “mean.”  I explained to him “maybe she was just having a very bad day or was unhappy.” I asked him what we thought we should do, to cheer her up? We decided to pay her check and not tell her. We gave an extra twenty-dollar bill to the waitress

 

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to pay for her bill and the next customer’s.

 

No way did we start this trend but I’m sure my son and I were way ahead of the crowd. Now, I decided to take another approach to kindness and gratitude.

I am appreciating those things I have or own that I take for granted. Like my pillow, not the saggy old one that is basically flat, but the newer one that has some bounce to it like the hop of a bunny on a lazy green lawn.

 

View image | gettyimages.com

 

More importantly, I am thankful for my white comforter because it keeps me warm at night perched on top of three, sometimes four, other blankets. I get cold easily either from Fibromyalgia or Hashimoto’s Thyroiditis or a combination of maladies.

 

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No, “she” is not a down-filled comforter, I tried that. I ordered a queen sized comforter from a very well-known and expensive store, put it into a duvet cover and within three days there were feathers flying everywhere both in and out of the duvet. About 2,000 flying feathers.

 

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I started sneezing and I couldn’t stop. I have had down comforters before with no problem but THIS company/store was quite arrogant about the problem and turned me off so much I decided not to get a replacement for it. It was horrible, it looked like the down comforter had exploded. Not a good experience with THAT company! Be nicer to your clients please. I would have stayed with you if your service people had been kinder.

It doesn’t take much to make me happy, it could be a piece (or two) of milk chocolate or rainbow sprinkles on vanilla ice cream, it could be a new book or a gift card to Amazon. Most of all it could be an appreciative grin or the blink of an eye or my husband’s loud laughter when he thinks something I’ve said is silly and funny.

View image | gettyimages.com

Appreciate all the small stuff, because you know what? It’s all small stuff and in the end, if you start noticing more and more of the good stuff? It will make your day-to-day life a lot happier.

Focus on the good and not on the bad. Hold the door for someone, smile at a stranger, always say “Thank you” and “You are welcome”, if someone was kind to you, thank them.  It really IS the little things that count. Life is scary, it’s unpredictable and it is short. Families can be stressful and hard and filled with tension BUT, they are still family. Appreciate the good people in your life. Get rid of the negative people who influence you.

We ALL need reminders once in a while, that’s okay. Just come back to it.

WISHING ALL OF MY FACEBOOK FRIENDS A HAPPY AND HEALTHY NEW YEAR.

 

Is Begging From Strangers On The Internet Now “In?”

The first time I saw an ad over the internet for a couple asking for money from complete strangers, all over the world, I thought it was a joke. I literally thought it was a spoof but it wasn’t April Fool’s Day so I didn’t understand it. Until I saw another ad asking people for money to pay their expenses to cover their credit card minimum. I’ve seen actual ads for couples asking people to donate for their fertility treatments, for their sick dogs and cats and yes, one for an ailing bird.

My husband was laid off from his job10 months ago. He started looking Day 1 and hasn’t stopped. I am not able to work full-time due to physical limitations (numerous health conditions including Fibromyalgia, Kidney Disease, auto-immune disease, Hashimoto Thyroiditis, Syncope and Hypotension ) but even I am looking for part-time. We are not eligible for unemployment money. It never crossed my mind to put an ad on Facebook or anywhere on the internet to beg for money. Call me old-fashioned. When did this become a socially accepted use of media? Or, a personal standard?

I’m not judging (okay, I’m TRYING not to judge) but this is all so new for old-fashioned me. Is this the younger generation’s idea of problem solving? I sincerely hope not. So, believe me this blog post is NOT about asking for money. I would not do that. But, I am asking for a favor and while I don’t have high hopes I consider this networking because my husband gave me permission to put his résumé on my blog.

He does not want a hand out. We would not accept money to pay our bills. We would rather move (which we are talking about) anywhere he can find a job. Do I want to move? Not really. I have an elderly mother here and my sister, both twenty miles away from me, I’m in the middle. Our children go to SUNY schools.

Half Empty Or Half Full? (Photo credit: MarkyBon)

I am not asking for pity but a connection would be lovely. The following link is my husband’s resume, please read it and pass it along if you know anybody. Anybody who is somebody is even better!

Click to access dfriedmann.pdf

If you can find it in your heart to take a minute to read his résumé, we would greatly appreciate it. I’m not too proud to network for my family, that’s what families do, we stick together. We are trying to stay positive, truly. Today was rough, maybe tomorrow will be better.

Thank you for reading my blog and for any help you can give us.

 

 

 

 

 

 

 

An Open Letter To Ellen Degeneres

English: Ellen DeGeneres in 2009. (Photo credit: Wikipedia)

Dear Ellen, I hope you don’t mind me addressing this to you, I just need someone to listen, someone who cares about other people. I thought you were the right person even though I’m sure you will NEVER see it. That’s okay. With the exception of a few best friends I’ve learned the hard way that other people are too busy in their own lives to care.

I DON’T WANT ANYTHING FROM YOU.

I guess I’m trying to think and talk out loud here. I’m lost, and have no idea what happened to me, I have no idea who I am either though I used to know so clearly.

Have I just become a mountain of symptoms trying to blend themselves together in a jig saw puzzle where no piece fits? I’ve made changes, I stay away from negative people, I try to be as kind as possible and pay it forward when I can but still trouble follows me like a black cloud.

Believe me, I am NOT asking for pity. I don’t want anyone’s pity, if I want pity I give it to myself, underneath my three layers of blankets, with the door shut tight, my dog lying next to me on my bed. I don’t want pep talks either, encouraging me that it “is just a phase.” This phase is my life and I have accepted it, I just don’t understand it.  When I try to fight against the “down” period, people tell me not to do that and to be positive. Everything is a mixed message.

You have the natural talent to bring joy to others just by being yourself, I love that.

Right now, I am a huge collection of symptoms that I don’t mind sharing, I’m 57, there are people who are 97 that are healthier than I am. From head to toe: narrow angled glaucoma (eyes) many, MANY painful treatments in my eyes to try to correct that, but its a life long condition, hearing loss (had stapedectomy-operation for ears) the dreaded Eppiglottitis, I don’t wish on my worst enemy, I shiver at the thought, (open, gaping wounds below the throat,) horrific TMJ, shooting pains from my jaw/ear to my brain causing me to scream with agony caused by any random thing and some other facial myalgia the doctors threw at me) which I don’t even count. I have IBS, Fibromyalgia, Fatigue, No energy, Chronic muscle and joint pain, Fibro Fog (not remembering something someone said a minute ago.) General Anxiety Disorder, Hashimoto’s Thyroiditis (an auto immune disease of the thyroid) foot pain, wait, the most recent one and most deadly,  Kidney Failure, Stage 3? (No one ever told me about Stage one or two) I think I’ll stop here.

Now for the social things, I can’t work because of the above illnesses, my husband was laid off for the second time and still is not working. We have two fabulous children who are attending two different state universities and a dog (our second) I rescued from a shelter.

I want you to know that we ARE thankful for our blessings, we truly are. Writing this down makes me realize that even more.Thank you for listening, sometimes it is good to write it down and look at it on paper.

But, am I jinxed? Is this what they call “going through a rough patch?” Whenever I feel I’ve reached bottom something else happens. Do you only know where the bottom is when you finally start climbing up slowly? Isn’t it possible to stay down here forever?

I guess I just have to accept what is going on now, breathe slowly in and out and believe that something good will happen. Someday.

Please don’t “like” this post. I don’t.

Eppiglottitis: Asked and Answered

Throat Diagram (Photo credit: Wikipedia)

To my fellow Eppiglottis Sufferers,

Here are some answers to questions you have asked me:

1) YES you CAN get Eppiglottitis AGAIN and I’m sorry. ( I have had it twice )

2) There is no way to prevent it. If you found a way, please contact me immediately.

3) Yes, it causes unbearable pain.

4) I  worry as soon as my throat tickles much less hurts.

5) “Calling Eppiglottitis A Bitch Is A Vast Understatement” is my most sought after and popular blog post.

6) No, I never had my throat/breathing problems/occur  but if you have trouble breathing,

go to the Emergency Room or call for an ambulance. Do NOT take chances.

7) No, you cannot “SEE IT” looking down your throat. It is below the throat and a doctor will have to “scope you.”

(don’t ask.) Okay, fine, he or she will have to thread a tube through your nose so the doctor can see what is happening down there.

The first time I had it my ENT (Ear, Nose and Throat Specialist) said “How the hell did you get THAT?” Gee, thanks, Doc.

8) Yes, I too, live in constant fear of getting it again.

9) Other doctors? I have been told if I get it again (UGH) to see an Infectious Disease Specialist.

10) It hurts so MUCH because it is incredibly painful to swallow and you have to swallow, lying on your stomach and spitting into a bowl is an idea but not a solution.

11) I feel your pain and your anxiety and I hope this will be an Eppiglottitis free year for us all.

12) Yes, I do have Fibromyalgia and an auto-immune disease (Hashimoto’s Thyroiditis) but apparently there is NO connection.

13) and Yes, if there is interest, I will consider starting a group on-line.

Feel free to keep those questions coming and to share your own miserable experiences, believe me I can relate to them all!

GOOD LUCK FOR A PAIN FREE WINTER!

The Songs I Sing

Music ~ Be There For You (Photo credit: Daniel CJ Lee)

I have written songs in my dreams for many years. I don’t write songs every night, but once in a while I write the lyrics in my sleep, beautiful words are strung together that blend into a harmonious chorus. Upon wakening, I forget everything. It’s time to take out the notepad and put it right next to me for these times, to try to force myself to remember my dreams and to remember the words to a song that needs to be sung.

Consciously, I don’t know what the songs are about although anything that has to do with me must have love in it and probably conflict too. They generally go together, don’t they? Love spreading it’s wings, love in nature too: the ocean’s symbol for how unpredictable life can be, the sun, darkness, tragedies, the magic of birth, love, that unite us all.  It only takes one lit candle to give light to another. When I was young I thought the world was a friendly place, united and peaceful but I have given up hope. I’m not innocent anymore; I’ve seen too many senseless tragedies to believe that the world is good, too many jaded memories, too many senseless killings.

Physically, my body aches, I can tell when I have a fever when my legs hurt and my skin is sensitive. The throbbing in my head has been constant, aspirin and allergy pills have done nothing. My dog is having a barking competition with the dog next door and that is making my head ache even more. Music, which always soothes me, doesn’t help, even on the lowest volume so I turn it off and lay flat on the bed. My blankets cover me, I try to close my eyes but my arms shake and there is something uncomfortable about me, an illness I cannot define.  Is it Fibromyalgia? Is it a virus? Is it a reaction to the flu shot? Is it my auto immune disease, Hashimoto’s Thyroiditis? Whatever it is when will it go away?

It turns out it takes the better part of the week but it is leaving my body now and for that I am grateful.  I realize, however, that I am saddled with two difficult diseases that make anything hard to live with and to diagnose. Sorry, I don’t mean to be disrespectful but that part alone sucks. I try not to dwell on the chronic illnesses they just pop up in situations like these, I know I have to live with them, co-exist, not in peace but in acceptance.

I look around my bedroom and I feel uneasy, it is the one room I would like to organize and fall in love with again but I certainly don’t have the energy to do it now. I need to love my bedroom, but I can’t, there is too much clutter. Clutter everywhere, this room used to be my sanctuary, a place I would go to be at peace. Now, it represents too much garbage and disorganization, books, perfume, two kinds of deodorant, an old coffee mug, a bottle of water, a flashlight, a phone, old photographs and that is just in one space. I know this is not good for me, I realize it.

I need to clean, to put things in their proper places, to organize my space, my world, inside and out. Whether or not I capture the words of my songs on paper, I need to sort things out in all aspects of my life.  I know that once the physical space is clear, I will make the choice, that the music will be a wonderfully complicated, song with a lot of tenderness, love, warmth, grief and of course, a touch of the blues. It’s real life, after all.

photo credit to above named photographer

@copyright

Dear Bear,

Photographed by Daniel Case 2006-01-20. (Photo credit: Wikipedia)

I love your spirit, Bear, and I don’t even know you. I feel stuck, like I’ve been treading water for way too long a time, I know I won’t drown but I honestly have never been this tired or this doubtful before. Ever.

You have spirit, dear blog friend, and I admire that immensely. Right now I don’t have anything or feel anything except for hunger on occasion. I try to read but I don’t get past the first line. Music, which always soothes me, distracts me, and I turn it off immediately. I am lying on my bed with my computer and my dog snuggling at my feet, I could stay like this and not go out at all. I make myself go out because I think that it’s healthier for me.

I’ve always said “I’ve never been a depressive person” anxious I could cop to, but I was never really depressed. What the hell am I now? I’ve done all the right things, seen a doctor, talked things out but I just can’t figure this one out. I know it started when my husband was depressed first and I couldn’t handle that, I became depressed by osmosis. Being with a man, whose main quality was an even, happy, disposition, start going downhill, freaked me out. It was hard to see him suffer, to lose interest in things, to sleep a lot, to hate his commute, to not pay attention to me. The most he paid attention to was his stupid and annoying cell phone where he could be distracted easily with e-mails, “Words With Friends” or other games.

This was not the man I married, almost 25 years ago. We’re working it out. Approaching our twenty-fifth anniversary, maybe that’s what’s bothering me too. We don’t know what to do, where to go, we are not fighting about it all, we just don’t seem to care enough now plus the weather where we would want to go would be hurricane season, no thank you. Our relationship started changing before my daughter and I went on our Florida trip when he was being cheap and mean-spirited, again being passive-aggressive, I didn’t recognize that man. As time went on we tricked ourselves into thinking it was fixed but apparently it is still broken; I am still broken.

I could blame some of it on the stifling weather we have had for three weeks in a row, my Fibromyalgia and my auto-immune disease (Hashimoto Thyroiditis) but I have had them for years and I was a lot happier before. I’m not sure what to do. I was found by my old best friend, a woman who I was friends with when I was seven yet I feel like I lost my best friend. Is it my husband or my real best girlfriend in Long Island, who doesn’t stay in touch? Probably both. I’ve stopped trying, I don’t even want to try, which is really sad. Do I even have the strength to say good-bye to her? I can’t say.

Bear-Woman, you are young and strong and I envy that and I am proud of you. You have time to sit down in the sun and wait it out. Whatever you are going through, I know you will make it through just fine, I have no doubt. I picture you on a mountain top somewhere, living with Nature, with a soaring eagle nearby and you in hiking boots on her way to the top. I don’t have the drive to do much of anything, but I feel good in knowing that you do.

Best of luck in your search, I have no doubt that happiness will find you, there is no need for you to even look.

Your friend,

Hibernationnow.wordpress.com

all photos are property of the photographer.

And Now I Shake

ECG complex. (Photo credit: Wikipedia)

For the last six weeks I’ve felt light-headed; I’ve often brought this up to my internist and she has always said that it’s my low blood pressure ( 80/60.) “Salt your food” she murmurs, “stand up slowly from a seated position.” Then she adds: “That happens to me too!!” (Now I’m SURE we can be best friends because we have so much in common.) My husband insists that it has been happening more often and he has nagged me to see my doctor for a few weeks now, I’ve refused.

Yesterday I had an annual physical with my gynecologist who I like but totally FORGOT that she’s a worry wart like I used to be. Notice the PAST tense. I casually asked her if she thought I needed to see my internist about this small issue. She said “yes” and “that it might be a problem with my heart “valve.” The only “v” word I expected to hear from her was “vagina”( if there are any guys reading now is your opportunity to run) valve did not make me happy. I finally confessed to my husband, tried not to look at his smug face and called to set up an appointment.

I described feeling light-headed, having to bend my head down to prevent fainting, feeling very warm, getting a massive headache but never passing out. I could reach a chair or a bed and sit down and I’d be fine in a few minutes. It never happened when driving and obviously if I felt weak, I wouldn’t go out. It did happen going up or down stairs but I always held on to the banister. It was NOT, in my estimation, dangerous.

Now that I had conceded, a nurse gave me an EKG which was perfect with the oddest exception. My whole body started shaking. Once or twice lately I have noticed that my body starts shaking uncontrollably and I can’t stop it. I have asked my husband if he could see it and he has always said “no.” I think it’s one of those “guy” things. The nurse noticed it right away, I’m sure a best friend could as well.

So now, I could add “shaking” to my long list of maladies. Along with Fibromyalgia, almost passing out, Thyroid disease, Auto-Immune disease of the thyroid,  impaired hearing, I shook. I felt like one of those bobble heads except it wasn’t just my head that bobbled, it was my body wobbling. A nurse took five or six vials of blood and then the doctor told me (wait for it…) I had to go to the cardiologist for an echocardiogram and even worse, a stress test. No, No, No! Ugh, this is sweat and embarrassment  in front of others and I hate that kind of stuff. I gave my husband the evil eye, actually two evil eyes. They scheduled me in six weeks, obviously not a crisis situation to them (Thanks, honey!)

My doctor used this new phrase at least five times during my seven minute visit: “due diligence. In my language that means ” I’m running these tests to cover my ass.” For someone who used to get anxious for days, even weeks, I only got anxious for about five minutes which for me is zen-like (and that’s when they  told me I had to see the darn cardiologist.)

As soon as we got home,  I made myself my old standard comfort food, an American cheese sandwich on soft bread with butter, some salt-ridden baked sour cream and onion Lays potato chips( for medicinal reasons only) and a cold Yoo-Hoo to drink. For dessert, nothing speaks comfort more than a dish of really rich vanilla ice cream, softly melting in a red ceramic dish. No drugs of any kind were necessary. No jelly on pizza, I required nothing else. Damn, I was proud. But, I still have to do those stupid tests unless, as my sister suggested, I cancel?! What do YOU think?

Woman in Café with Yoo-Hoo and Cigarette, after William Glackens (Photo credit: Mike Licht, NotionsCapital.com)

Fibromyalgia 2013 – UPDATE

#Fibro – Awareness Day (Photo credit: sand625)

I’m being a bad patient. Yes, I’m confessing. I have a doctor’s appointment with a new rheumy (as us Fibro patients like to call them) a new rheumatologist in about a week and I think I am going to postpone it. Again. My old rheumatologist who I do indeed love, takes about three hours to get there and back, usually more, and this one is only twenty minutes away, I’m getting lazy. However, this is the height of flu season and I really do not want to expose myself to the “flu factory” that is my doctor’s office. It is not just one office, it’s two buildings of sick people for every specialty in the world. It’s a factory for any illness you can think of. In addition to having Fibromyalgia, I also have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis. Just glance at me and I will catch it.

This is a tough choice. Had I been feeling extremely poorly now with Fibro I would surely go for the appointment but the fact is I’m feeling pretty good. (I know, don’t jinx it) It’s the first time in many years that I am NOT complaining about aches, pains, moving or walking. SHUT UP! my friends will say but no, I cannot. Of course, I still have Fibro Fog to the extreme (really scary) and I am on enough medication to kill a horse but this last combination of drugs apparently is doing a little something-something. You guys understand…

Sure, I suffer from the tender points, but I don’t even count them, they are as natural to me as getting up in the middle of the night to pee. I accept it. And yes, I have all the other symptoms of Fibromyalgia: IBS, tingling, headaches, “yada yada yada*” but overall I feel better. I’m not asking for fabulous, I’m just satisfied with better. Better to a Fibromyalgia patient is like a miracle, BUT it is a miracle for however long it lasts. I think a lot of it has to do with my endorphins being raised quite a lot. Wish I could say it was from exercise but let’s not get too crazy here. It’s the result of medication, and no, not-self medication.

Right now, I’m just appreciating feeling a little different, in a positive way. I want my Fibro friends, and the newbie Fibrosmyalgia patients to know that it is, indeed possible. Don’t give up hope, maybe one day you will feel better too with the right combination of medicine. Keep fighting. I know there is no cure but you need to trust your doctor, or team of doctors and they need to believe in YOU.

For now, until it changes, I am happy, fine, content. Do I think it will stay like this? Probably not. Do I hope so, definitely: yes. But, as we all know with Fibro, we have absolutely no control over anything, which really is the hardest part of all.

Let’s wish each other a whole lot of luck.

If you have questions for me, especially those who are new to Fibromyalgia, feel free to ask, I’m happy to help.

*yada, yada, yada from Seinfeld

Should We Take A Moment To Mourn Together?

Mourner. Could be Isis mourning Osiris (Photo credit: Wikipedia)

Dear Invisible Illness Sufferers:

I’m conflicted. I want to say that we have lost a part of ourselves, a physical and emotional part, do you think it is a good idea to get together in real or computer time to say good-bye to the people we once were? Have we done it ourselves? Or do we just accept and let it go? There is the before Fibromyalgia or Diabetes or CFS, Virus, Autoimmune OR fill in the blank disease________ and after. Think about it, it would be an acknowledgment of our former selves, our loss and our lives now. We mourn people we loved; I am not the same person I was before my father died, I view my life “before he died” and “after.” Maybe we should have a ceremony together for the people we became after our loss, as simple as being silent for a minute at a designated time?

I guess this begs the question: do we ever really accept it 100 percent? We make do, we understand but it’s a way of life that we have lost, forever. I don’t believe that it will ever get better in my lifetime or that there will be a cure. That’s just my opinion. A wonderful approach is given in a book by  Toni Bernhard called “How To Be Sick” which is a Buddhist inspired way of living with your illness. It will teach you things, no other book will teach you.

It has taken me years to truly accept Fibromyalgia, chronic pain and an autoimmune disease called Hashimoto’s Thyroiditis, my activities are now severely limited. Part of my energy used to be used defending myself to people who thought I was out of my mind or a pill popping junkie. Sigh. I can reassure you I am neither of those. Realistically, who would WANT to be like us? Does it sound glamorous to have no energy and to be in pain constantly? It’s not like we take magic pills to make us feel great, there are no pills that take away the pain. In fact, we don’t even remember what pain-free feels like. Of course there’s Fibro Fog but that’s a whole other blog post.

After the imaginary designated time where we mourn our former selves, we give our thanks,  grateful for the life we DO have, for the cyber friends that are in the same situation that UNDERSTAND and for the body that still exists and for the many blessings we hold in our hearts.

Tell me what you think, I’d love to hear from you.

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