Thursday, October 29, 2015

How to encourage and support those with silent chronic conditions. Show the Love!

So there I am, lying on the floor of the workroom, pins sticking into my arms and legs, covered with thread and the piecing I am  hanging on my design wall, the bruising ladder across my body. A yardsale scrabble of everything from the sewing table is scattered across the room. The iron scorches its way through my cutting mat.

"What the hell", I think?? And then, 'Ow", but, "What the Hell??!"

How did I get here? Why am I on the ground? Did we have an earthquake? Where are the cats??? Did I break anything? 
I pick up the iron, remove all of the pins from my arms, and thighs, and apply liberal amounts of neosporin. I am glad not to have landed on any with my face. My pins have been everywhere. Everywhere. On that romantic trip to Maui, to the Galapagos, to visit my Sis in Yuma... on jaunts during a life being lived.
Strange, I think. I must be dehydrated. 

And then it happens Again. Cross country skiing on a sunny blue bird day with the Dawg and the Hubster. And then Again that same day, on that same family outing. My husband can't understand why I am so stiff. Neither can I. The Dawg keeps refusing to leave my side. The cats have become barnacles, fastening onto me the moment I am still. 
I am so stiff, I can barely move. Exhaustion overwhelms me, permeates my soul. I need help getting up from any sitting position, am too tired to stand to iron. Can't get out of the tub by myself. "Dammit!" I think, "I've got work to do!!"

And then Again, in the snow on a hike, out in the glorious backcountry. 
Seven miles from home. 
Just me and the Dawg.
It takes me four hours to stumble and stagger my way back through the foot deep snow. A twenty something laughs at me as I near the trailhead, and home. Thinking I am drunk. Or something else, more shameful. The Dawg patiently props me at her side as I try to lift a leg out of the snow to take a step. Then, exhausted, subside into the cold wetness to rest. Then struggle up to take another excruciatingly slow step. And then another. And finally up the hill, 150 feet and 30 minutes, to home. 
No one offers a hand or expresses concern to see someone's Mom struggling to return to home and safety. Bizarre, I think.
I am embarrassed. Deeply, Deeply Embarrassed. 

Then, out of the blue Again, two solid months spent laying on the floor, Vertigo spinning and rolling like a runaway carnival ride from one of those awful '70's monster movies. Lights flashing and sounds warping. Barfing like no tomorrow. Every day, all day. Unending. Nights spent on my side, at the edge of the bed, so that I could roll slightly to throw up in the garbage can placed on the floor, at my side.  My friend Loretta comes to hold my hand and empty the clear fluid from the trash can, for me. I get vertigo, too, she says. Does it last this long, I ask? Concerned, she shakes her head. I make an appointment with an Ear Nose and Throat doctor (ENT). My own doctor says it's just menopause. "What, do you think? You're special?", she says, "Do you think you don't have to go through this like everyone else does?" She's been telling me this for Four Years.  She tells me I am a hypochondriac for wanting to see another doctor. I go anyway. I am not a Freak. Begging for attention. At least, I don't think so...

I cancel my first appointment, because I am too dizzy to drive. My husband travels for work. My son lives thousands of miles away. I make another appointment and wait 2 months for it to arrive. There are no doctors who specialize in Vertigo, in the entire state of Alaska. The one who did, has just retired at the age of 78.

As I wait for my appointment, half thinking I am a lunatic, and half angry for believing that, I have increasingly frequent vertigo and lose the hearing in my left ear. I cannot walk upright. I cannot read. I cannot use a computer. I cannot hear on the phone. I cannot meet my obligations. I break a finger when I accidentally close it in a drawer when I have a sudden attack. I spill a pot of boiling soup over my hand and get third degree burns. I begin to go out less and less. I spend the two months home-bound, not able to drive, too embarrassed about staggering and stumbling everywhere, to go out without my husband, and his arm to lean on. Using the computer becomes an impossibility as the light and typing make the vertigo much worse. I begin to drop things more frequently. I stumble to the end of my road and back, 3/4 of a mile, several times a day, in order to get outside, where the vertigo is less. One of my neighbors begins to come out as I go by, and leer at me. I ignore him and continue on with the Dawg at my side. It is my fervent wish that she will bite him. If she doesn't, I think, I just might. His ankles anyway, since I'll be laying on the ground. 

Having unexplained and unexpected vertigo is like being mugged. Something comes out of nowhere and takes everything you have worked so hard your entire life, for, for no reason, and leaves you shaken and mauled, on the ground. Then you get up and tell yourself that you were in the wrong place at the wrong time. That you shouldn't eat this, shouldn't do that. Slowly, your life returns to normal, and you can work again, albeit less. Slowly, you forget what being mugged was like. The terror. The Fear just after, everywhere you go, everything you do. Slowly, you get most of your life back, although it will never be the same. A different life now, but maybe one almost as good. 
Then it happens again. Out of the blue. Everything gone. Everything taken away. And you struggle to your feet again, bruised and bleeding, and with less faith. You pare your life back so that what you think you did wrong, won't cause this to happen again. You go out less. You worry that it will happen again, and that it's your fault. You wonder what of a million possible factors that may or may not be under your control, contributed to this awful event happening again. Then it happens again. And Again. AND AGAIN. Many people with silent illnesses never venture out. Many, many, take their own lives. 

My appointment arrives. I park in the parking garage, the sequence of poles making my head spin. I stagger up to the front entrance, where the attendants smile kindly, and open the door for me, telling me how to get to the elevators. There are three floors of glass enclosed stairs in front of me. A vertiginous nightmare. I am overwhelmingly thankful for their kindness, and for the fact that they haven't laughed at me, or treated me as if I am a freak. It's just an ear infection, I think, perpetuated by the broken nose from the car accident. I'll get this fixed in a jiffy with some antibiotics and, maybe, nose surgery.

I sit in a cold, empty room, eyes closed because the fluorescent lights make me dizzy and nauseous. Palms sweating because I am certain he will tell me I am a hypochondriac, and that this is all in my head. The door opens and the doctor walks in. He looks at me, slumped, deaf and desperate. Three seconds later he asks me, "Do you have a thyroid problem? Have you ever heard of Meniere's Disease?" Three seconds to make the diagnosis that gives me most of my life back. And allows me to come to peace with what can be of my life, and make more beauty out of the rest. Three seconds to act like a human to someone lost and in need. Three seconds to re-teach me something I have known all of my life. How to be kind to others. How to care even if you don't know what they're going through. How to have empathy. Three seconds to humanity. 

It's been several months now, and every day, three times a day, I do vestibular rehabilitation, so that my brain knows where my body is in space and time. I have changed my entire life around, to make it work so that I can do what I want to do. What I NEED to do. To not let others down. To perform at my best. To be reliable. To do what I say I am going to do. 

To not cancel my life and exist in Fear.

Fear of failure. Fear of missed opportunity, Fear of what others think, if, no WHEN, they see me stumble, Fear of disappointing others and what they want to see me do and become, Fear of having a sudden attack and killing someone's beloved family with my car. 

Fears big and small, Fears real and unreal. Fears to freeze and inactivate, Fears that lead to a despair so deep that many with chronic disorders can't get out, so drown. Fears perceived, Fears that deceive and lie, Fears that dominate. 

Fear is no place to live. Fear is for dying. Little by little as it pares away at your soul, and who you are. I refuse Fear. 

I Refuse to Live in Fear. This is My Life. The only one I'm getting. I will not exist in Fear of failure because I will have an attack and miss a deadline. I now know and have practiced how to schedule my time so that that will not happen. Fear of missed opportunity. Strange, how life teaches us our lessons, whether we want them or not, isn't it? I have had to learn to take life at a much slower pace. To live in the moment, to cherish that moment. To be where I am and with whom I am with. I notice color and smell so much more. I enjoy life fully. I rest when I need, and run every day. I deeply regret working two jobs and going to grad school while raising my son as a single parent. I now know, even more than I ever did, that time spent with him is worth more than any grocery or sport at school. But sometimes, you need do do what you need to do. But I wish I had the knowledge then, that I have now. Opportunities are there. Plan how to take advantage of them in proper time. Stick to the plan. Time is precious, don't waste it. Be present. BE. Be you. Don't let what you think others will/are thinking keep you from going out and living your life. Do your best. Take time. Be loving. 

When you see me out and about, I will not be using a cane, so that people can know why I stumble. If they want to know why, they can ask. I will be moving through life as if it were a ballet. Because I choose to see the beauty in each moment, and choose to dwell there, rather to rush from task to task and thing to thing. I may stumble, I may look a wee bit crazed. I may take a brief break to stabilize myself. But then, Won't you come join me for a walk in the flowers, or a cup of joe and a chat about the fam?  A making of a quilt and a memory together? You'll find me in the midst of things, hearing people's stories, occasionally gripping a table edge, and Happy to be there. With You. Living.

Here are several other silent chronic disorders. This is not an all inclusive list, but folks with these disorders look perfectly fine from the outside. Won't you touch their hand and smile into their eyes and tell them you're there? Click on the link to see what you can say to them, or to learn more.

Meniere's Disease
Arthritis and chronic pain
Autoimmune disorders such as Type 1 Diabetes, Multiple Sclerosis (MS), Rheumatoid Arthritis
Chronic Fatigue Syndrome
Chronic Migraine
Crohn's Disease

You can expect to see lots of quilting, and pics, and love over here at SewPsyched! in the coming years, but you will also see some pieces that I am doing to help increase awareness of vestibular disorders. I hope that they help to spread the word so that people can live their lives more fully. 



  1. I am so glad you were able to get an answer and I hope it leads to great help and even better peace of mind. Hugs to you.

  2. It is the most gigantic relief ever when you finally find a doctor that knows what is going on with you and how to help. Thank goodness you finally found that doctor. I hope a full report was sent to your GP! (Grrr!) Thank you for not giving up and for being an inspiration to all of us. I am so sorry you have had to suffer so much pain and embarrassment. You are an amazing and strong person. Thank you for writing another excellent and informative blog post. I am waiting weeks to see a doctor. The day of the appointment is finally coming on Tuesday. I have to reschedule that surgery that I had cancelled. I thought I was better but it turns out I am not. (Everyone around me thinks I'm just fine though.) XO

  3. Thank you for sharing this. I have chronic back issues for over twenty years. For almost two years now I've dealt with constant pain. I can't walk or stand without pain. Sometimes I can't get comfortable at all. But it is nothing compared to what my son is suffering right now. He's only twenty six years old and has constant dizziness (without the spinning), vision issues and numbness and tingling in his hands. We've gone to doctor after doctor after Doctor and have no diagnosis yet. He's been told it's in his head and that he's depressed. He's had doctors tell him they don't know how to help and not to bother coming back to them. He has had great friends and a great boss (even though he hasn't been able to work since March). I've been able to be his driver and we've gotten close. Through it all he's kept his spirits up and other than frustration at not having a diagnosis and a treatment plan, has a positive outlook on life.
    Thanks again for sharing your story. May you get better every day and never lose that determination to enjoy every day you're gifted with.

  4. Such an informative and useful post you have shared here with us. I really like the information
    you have shared here for us.

  5. What a really lovely post, it brought a tear to my eye. You're so strong I feel like I need to give you a big hug. What a difference a diagnosis brings. I suffered from depression after the birth of my second daughter. I couldn't understand what was happening, she was my second, I'd done this before why couldn't I do it now. After my diagnosis we were like okay that's what it is and we dealt with it. If I'd got a broken arm in plaster it would have been easier to get help and sympathy and support, but when people look at you think you're fine it's so much harder to explain. Thankfully my depression didn't last too long and now, 10 years later, it's a distant memory and I'm fighting fit. I solute you for being strong, it's not easy but you can do it. Having that diagnosis means you can work with it rather than it taking you over. Take care, sending big hug. :0) xx

  6. I can't even put into words how much this post touched me today. I came here to say Thank You for the prize I won from you a few weeks ago, it arrived yesterday and I've been petting it ever since :) I have an appointment on the 12th with an ear specialist because of sudden and very loud ringing/roaring in my ears. Praying we have caught this before it turns into Meniere's. My 28 yr old daughter is fighting the dizziness you speak of right now and is going for balance testing today. Your post was most certainly for me and my daughter today... Thank you!

  7. Glad you were able to find out what the trouble was. I suffer from vertigo as well, but haven't had an episode in over a year. I went for phyiotherapy at a balance clinic, and that seems to have worked for me. Good luck.

  8. Ah Lori sending you such big hugs, so sorry that the diagnosis took it's time. I suffered with Labyrinthitis when pregnant with my 3rd child and it was horrendous, although I knew I couldn't stand up at all for 3 days rather than being taken by surprise. It's incredible what things like this can do to your self confidence and outlook on life, well done for fighting this.

  9. I'm glad you have been able to figure out what is going on with you as well. It sounds like it was a nightmare when you weren't being listened to. My daughter in law has lupus and it is unbelievable how many people think things are all in her head.

  10. Wow, I am so sorry to hear that it took you so long to get help and start down the path to being better. Thank you for sharing your story and thank goodness for the specialist, I hope your own doctor has learned a thing or two going forward.

  11. Thank you so much for sharing your experience. Like other readers I too have an "invisible" disease. Like you I have experienced embarrassment and disdain from strangers and, worse, from doctors. I hope your readers in full health learn from your post. Again my thanks. Neame

  12. I have Meniere's disease caused by a viral infection to the vestibular nerve. I had 12 years of issues before it was properly diagnosed with rooms spinning, crawling down hallways and having people I barely knew having to call my husband to rescue me. It has done better since we have controlled the viral outbreaks, but about 10 years ago the virus affected the trigeminal nerve and I had horrible intermittent pain. It too is now controlled by medication, but things I took for granted are now causes for rejoicing.

  13. My Mum had "dizzy" spells,"bilious" attacks and spent days and days in bed for over twenty years. Finally a new Doctor listened to two symptoms and said Meniere's Disease!! It amazes me how many Doctors have never heard of this terrible illness. Two of my children have it in varying degrees. I am glad you are so much better.

  14. I also have Meniere's Disease. Your right to say it is like being mugged. The past 2 years have been miserable for me, not knowing when a attack would hit. I can so relate to your fears of when an attack will occur. Even in my sleep I would dream I was having an attack, then waking up to find out I really was. Once I was in a business meeting when a attack happened and I ended up on the floor with my head in a trash can. Horrible. My colleagues didn't know what to think. I was mortified! I was on medication that only worked after instance occurred, but nothing to prevent them. Durning a routine exam, my GYN found I had an extremely low Vitamin D blood level and put me on a large dose for 6 month. My vertigo has all but disappeared. I now take 1000 IU per day to maintain my Vit D level. I am not saying that is the answer for your situation, but have them check your Vit. D levels as It might be a contributing factor. I am glad to hear that you are better and that they were able to finally give you a diagnosis. Maureen in CT

  15. Oh my goodness, I am so sorry to hear that you've been going through such an ordeal! But, I'm relieved that you stuck to your guns and found the doctor and treatment that you need. Wishing you all the best with your continued recovery and sending you love and light!

  16. why didnt you tell me it was this bad?
    I had this as well after chris was born but it went away . silently just like it came.
    Live life to its fullest and ASK YOUR SISTER TO COME. You know that I always will!

    1. Just so my readers know, in 99% of the cases, Meniere's is a permanent disorder and will not resolve itself.

  17. I appreciate the courage it takes to live your life every day. I am a physician (and quilter) and I feel blessed when my patients take the time to teach me what they are living through. Since no one really understands any one else's experience, sometimes it takes a lot of explaining. I hope you are getting good Occupational therapy, to teach you how to move around in the unsteady world you live in. I wonder why you don't use the cane, when it could prevent you from getting hurt, at least some of the time. Maybe your OT would do an assessment to see if it could be helpful.
    Thank you again for sharing.

    1. Thank you so much for your kind and thoughtful reply, Linda. You're a no reply blogger, so I don't know if you received my email or not. I don't use a cane to walk because using a cane would actually make my balance worse. Vestibular therapy has helped my body know where it is in space and time, and the repeated exercises help to keep vertigo at bay, for the most part. I still never know what each day will bring, though. I mentionned using a cane, because I had pondered using it as a signaling device to other people who dont know or understand that someone could have vertigo at any age. I am accosted several times a week, when I am out and about, by people who think I am drunk or high, and I thought a cane might reduce those incidences... But I decided that informing people about vestibular disorders was a better way to educate people, rather than giving them a reason or excuse to behave well to me (because they thought I was injured). XX!

  18. Thank you for sharing. Your post is so well written offering us both insight and humor into something I knew little of. Your attitude toward the situation is amazing. I'm sure it isn't easy to stay positive but wanting to be is half the battle sometimes. Wishing you more and more wellness.

  19. I happened upon your post this morning and am sorry I didn't realize what you'd been going through. What a tough walk you've had!! Yay you for your bravery in making the best of what has to be really difficult.

  20. Omigosh -- what you have gone through! And to turn that around and write something so full, beautiful, informative, and inspirational -- that is even more remarkable. My heart is with you. I had no idea. Count me as one of the many enlightened by your remarkable post.

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  22. Praying for you, Lori. Thank you for bringing this to our attention and for sharing about your condition. And for reminding us to be thoughtful and caring, showing compassion for others. You never know just what they may be going through.

  23. Thank you for sharing your journey so honestly. My ex developed Menieres within a few weeks of me moving in with him. It was so debilitating for him, hard for me, a tough way to start our marriage (although he was a pain in the a$$ which is a separate issue .. Ha!). I'm so glad they were able to diagnose you and the vestibular rehab is effective. I hope by now your good days far outweigh the dizzy ones.

  24. Thank you for sharing your story, I'm glad to hear that you've grasped control back. I do suffer from pain in my back, it's been 11 years now. I have found only a couple of health care professionals in that whole time that have shown me real kindness, I'm still astounded by this! Kindness means so much. I hope you keep feeling better and finding joy, you seem like an extremely gutsy lady xxx