What it is like to have an Adult Child with Fibromyalgia

When I started my website I forewarned my parents that I’d like them to write a little something about how they have felt having an adult child with fibromyalgia. I think hearing different perspectives are good for everyone. Below are some of my mom’s thoughts. Soon I will have my dad’s thoughts as well.

From my mom. . .

 

Like all parents, we are so very, very proud of Felicia. We love her dearly. Yes, she’s the apple of our eyes – and The Helpful Hubby is the best son-in-law any parents could have. Well enough of the good stuff – now for the unexpected. Felicia has handled fibromyalgia better than I thought was humanly possible. Maybe receiving the diagnosis when a busy student at a large university is the time to get the crummy news. She couldn’t stop, she didn’t have too much time to reflect, and those papers and exams were always calling for attention. (I’m sure not a minute was wasted.)

 

Felicia’s diagnosis took about a year. She had not kept us “up to speed” about the number of different doctors but in an efficient fashion, we got the explanation, “don’t worry, don’t come up, there’s no cure.” Anger and fear weren’t really my feelings, more: sadness for my “baby,” “Ick, how can I help Felicia, maybe it’ll go away if it’s sort of a chemical imbalance.”

Mainly I wondered about her ability to conquer her courses and what, if any, adjustments the university would/could make. I wondered if she would get so bad that she would be confined to a bed. Then Felicia brought home a fairly technical book. I read most of it. She’s been bringing home reading material ever since. I’m not quite so ignorant about fibromyalgia now.

We still really want to help Felicia but, that is hard to do, especially with her living out of state. Always my first instinct is to wrap my arms around her and just hug tightly for a really long time—maybe hours. Well, with fibro, that’s not a warm, cozy feeling for her to say the least. I can’t say, “It’ll get better,” because it may get worse before it gets better. I want to bake goodies, but know I’ll be chastised because she’s trying to eat nutritiously. Since I live far away, I can’t run over and do the laundry or dusting. She’d probably love it if I’d fly out for seasonal gardening though. I’d like to baby her in many ways, but that doesn’t make her fibromyalgia get better, it doesn’t help Felicia deal with life better, it just makes Mom feel better.

Felicia, my husband, and I talk frequently. Felicia and her father have a very special, loving relationship. Mostly I whisper little prayers throughout the day. We try to support both her and The Helpful Hubby in any way we can from a long distance.

Generally when I see or talk with Felicia, the first thing I do is figure out if it is a good or bad day. When I can visit her, usually her general posture or eyes tell me, but sometimes it’s the braces, compresses, or verbal warning of, “don’t touch me.”

I hated during my pregnancy when everyone else thought it was the only topic to talk about. So, if Felicia wants to talk about fibromyalgia, I’ll talk, but I don’t make it the core of every conversation. Felicia is so much more than this condition. She is a vibrant, interesting, creative, intelligent, compassionate, and humorous woman who happens to be dealing with a lot of pain.

The major way I see her coping with fibromyalgia is through determination. If she says she is going to do something, it will be done. It will be on time and correct, and with bells and whistles, when appropriate. She has been the family organizer since age 4.

She tries to stay positive. It drives her crazy when people don’t even try to be pleasant when dealing with the public. Felicia is not one of those obnoxious cheery people. She wakes grumpy, gets headaches, has fibromyalgia; but she looks for ways to make things better, she doesn’t dwell on the spilt milk in life, and somewhere she has learned to make lemonade from the lemons life gives her.

Felicia monitors her activities. She is a really good planner. She will space steps out so that everything isn’t left until the last minute. Although she deals well with crisis, she hates being put in that position due to others poorly made plans.

Felicia uses tools that help make household chores easier. One, not-so-obvious “tool,” is being organized. She claims that everything in her house as its own “home.” She can tell someone exactly where to find almost any item in her house. This is helpful for others when they are trying to help her – no need to search around for items or feel badly asking where something is.

She researches fibromyalgia, reads books and articles, searches on-line, and learns continually. She is active in local groups, and of course she started her website and tweets. She really believes in a place for positive examples of people living with fibromyalgia. She hopes to be a banner of information for most, a shared moment for many, and a ray of hope for some. As her mother, I want her to succeed. As a person, I want you to succeed too. May this find you making progress which will lead to your good day.”

About Felicia: “I’d like to think that everything that I do in life is done with passion. To me it’s not worth doing something if you don’t believe whole-heartedly in it! I enjoy photography, flowers, baking, traveling and bicycling and am an active volunteer with my local Arthritis Foundation office. Everyone who knows me also knows my favorite color is purple. I started my Felicia Fibroblog in hopes that I would be able to create a community where people with fibromyalgia and other medical conditions relate. I planned to share resources I have found to be helpful as well as my own personal tips and tricks. I am lucky enough to know a few other ladies with fibromyalgia and will sometimes share their experiences as well.”

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The Invisible Woman

I’m smiling.
What else can you see?
Probably nothing.
Because you can’t see past it.

I should probably not complain that I’m living with an invisible illness. As much as I hate it, I also help perpetuate the term invisible. I don’t usually let people see past the smile because they’ll see the real me and I hate appearing weak. I also don’t want them to see what I deal with. It’s a double edged sword. It’s an invisible illness because you can look absolutely perfect while hiding a great deal of pain and it’s also invisible because we don’t want people to judge us. We get enough of that from doctors, we are afraid we’ll also get it from everyone else.

What you don’t see is the pain that starts the minute I open my eyes. I know what is going to happen the minute I put my feet on the ground. It’s a pain that makes me want to revert to crawling instead of walking. I limp toward the kitchen to make my coffee or tea, whatever my mood is that morning. Mornings are usually pain-filled so I can tell you the mood isn’t real perky. This pain continues throughout the day in varying degrees. The nights are the worst. I spend a lot of time in the bath. After that it’s in bed.

This all started after a nasty car accident in 2008. I was at a full stop and a truck hit me going approximately 25-30 miles an hour. Now, I’m not the type to whine so I was more annoyed than anything else. When the man came up to me and asked me if I was okay, I said I didn’t know. That was the truth. As I sat there it felt like an electric current was running through my body. I shrugged it off because I had things to do. I went through the rest of the year wondering what was happening to me? My back hurt, my body hurt and my memory was fading. Finally, after a year I finally had to stop working at my usual frantic pace and find out what damage was done. I never realized it would be life changing.

One of the biggest adjustments I had to make, and I’m still making, is knowing my limitations. I’ve said it before and I’ll say it again. I’ve never liked limitations. It doesn’t matter if it’s mental challenges, food or speed limits. You notice that physical limitations was not on that list. Nope, it wouldn’t be. I’ve always gone at mach one with my hair on fire and having to learn the cardinal rule of chronic illness has been difficult for me. If you push you will pay. When I have a good day, which isn’t often, I tend to make the most of it. I know, not good. You’d think I’d be getting the hang of it by now, but I haven’t. I still hate what my body has done to me.

I found my voice in blogging which is weird because I’m not real open with people. I’ve always been outgoing but very few ever got to see the “real” me. I am friendly, approachable and empathetic but not in reverse. Then I started to blog and was able to communicate on a truly different and surprising level. It wasn’t scary to have people be able to see into my soul and that has helped me open up in so many areas of my life. I tend to isolate myself because of the pain and with that isolation I’ve left many friends and family by the wayside. I’ve been able to communicate about the pain and depression. Again many things surprise me. I’ve also learned about people that suck the life out of your soul and cut them out. I have too many other things to deal with so they just had to go!

The other adjustment I’ve had to make is in the area of control. I’ve always like to control the environment around me. That’s a huge part of my personality. I’ve always felt that if I can control things then I won’t get any nasty surprises. Well, I didn’t say that it worked I just said I liked to operate that way! I’ve had to accept that I won’t know what I’m dealing with regarding my body on a day to day basis. That means I can plan but plans may change. I’ve had to let go and that isn’t easy for me. So many things haven’t been easy and I’ve had a hard time dealing with that. Fibromyalgia, and any chronic illness for that matter, wreaks havoc. I don’t care whether it’s physical, emotional or financial. It trips a domino in your life that starts with chaos and mayhem in your physical body and continues on until it messes you up emotionally. Then it loves to cause real damage when your financial life you had goes out the window. I know it’s something I have to learn to accept but it’s that darn little word called control. I don’t have it and it makes me crazy.

So it’s 3 a.m. and it’s another night of robbed sleep. I will try to close my eyes but I don’t have high hopes. I’ve taken the muscle relaxers and pain medication but my muscles are still not paying attention to the fact that they’re supposed to calm down. I’ll end this post and turn off the lights and hope beyond hope for a few hours of sleep.

Rosemary Lee lives with fibromyalgia and she tries to find humor in everyday life. Sometimes it works and sometimes it doesn’t. She says, “I am an analytical dreamer. Oxymoron? I think not.” Visit her blog, Seeking Equilibrium.

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Ever Considered Leaving a NICE Note for Some Parking in the Handicapped Spot?

Have you ever watched a woman (or man) park in a handicapped parking spot and then you see her get out and walk into a building? Perhaps people around you may also be watching. . . and doubting that she has any kind of health issue.

But you know! Perhaps you noticed the slightest limp or her pause to catch her breath or her balance. Part of you wants to go up and say something–but what? And you don’t want to offend her either.

Have you ever considered leaving an ENCOURAGING note?many of us who have (legally!) parked in a blue spot have received rude notes left on our windshield, so why not leave an inspiring note?

What do YOU think? If someone left you a note that said something like we’ve listed below would you be encouraged or feel like someone was getting too personal?

Here are some ideas of what you could write. Feel free to add your own in the comments section below.

• Invisible illness can be one of life’s greatest challenges. You are doing it with style!
• You never know who’s life you are touching. Your strength despite your pain encouraged me today.
• I live with invisible illness too and I wanted you to know someone is praying for you today.
• I’ve lived with __________ for _____ years. Seeing you today encouraged me to keep on going. Thank you!
• You never know how you can encourage someone just by doing daily errands. I have _________. Seeing you parking here and living life, was inspiring to me. Thank you.
• I know personally how hard it is to live with daily pain. Thanks for reminding me to hang in there just by going on with your day despite your pain.

Read about our founder Lisa’s parking spot experience in the article, “Can Those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red?”

Popularity: 2% [?]

When Illness Hits a Young Married Couple

By Ashley

My husband, David, and I are in a somewhat unique situation with our invisible chronic illness. Although I am the caregiver, and he is the one with debilitating pain from Psoriatic Arthritis, he is the one that goes to work every day. David is a computer programmer. He sometimes works from home, and his schedule is somewhat flexible. We are blessed that he has a job he can perform even with his disability.

My job is to do everything I possibly can so that going to work is all that David has to do. I call his doctors, pick up prescriptions, duke it out with the insurance company, walk the dog, clean the house, prepare meals according to his dietary needs, get the oil changed, etc. I do it all so that when David gets home at night, he can rest. Dinner is usually ready, and he can lie on the couch watching a movie or playing on his laptop.

I used to get frustrated that David was disabled instead of me. I could be the sick one. I’m home all day anyway. David’s a great husband. He’d take care of me.

I used to think that . . .

Until David finally told me that if I was the sick one, he’d still have to go to work, and then come home and do most of the things I do for him. (Which is exactly what many caregivers have to do.) If I had his arthritis pain, I wouldn’t be able to walk the dog or grocery shop any more. David said it’s really better this way. God knows exactly what he’s doing. I may not always understand or trust God the way I should, but he is sovereign.

Matthew 10:28-31 (NIV) says, “Do not be afraid of those who kill the body but cannot kill the soul. Rather, be afraid of the One who can destroy both soul and body in hell. Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows.”

I asked David what advice he would give another couple with chronic illness. His answer is one I can’t top:

“There are days when I’m in terrible pain, and Ashley goes out of her way to help me. Then there are days when I’m in terrible pain, and I go out of my way to help Ashley.”

“A Young Wife” suffers from TMJ Disorder. She loves Diet Coke and spoiling her dog, Henry. In February of 2008, her husband, David, was diagnosed with Psoriatic Arthritis. Having a chronic illnesses as a young married couple has changed their lives. Visit her web site, A Young Wife for more encouragement.

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How to Give an Ill Friend Love, Understanding, and Support

I have lost many friends since developing Fibromyalgia. I don’t know why they have chosen to abandon me in my time of need, because they did not tell me. I can only assume it was because being a friend to a chronically ill person is difficult. But it doesn’t have to be! I don’t ask for much; just your love, understanding, and support.

It’s ok to ask me how I’m doing. However, I’m not going to lie and say I feel “fine” just to make you feel better. I’m not fine. I don’t feel fine. I’m not doing fine. I hurt everywhere, I can’t sleep, and it depresses me. But it’s still ok to ask me, because it shows me that you care.

Please, please don’t ask me if I’m getting better. Once I figure out how to manage my pain and other symptoms, the entire world will be the second to know. Until then, everything changes from day to day, minute to minute, even second to second. It’s all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts.

I beg of you not to tell me that I need to exercise more or to just “walk it off.” I do what I can – light stretching, moving around, and now even water aerobics. It’s excruciatingly painful. Unless you can feel my pain and understand exactly how my body reacts to every movement, unless you have Fibromyalgia as well as the myriad of spinal conditions from which I suffer, unless you are me, you have no idea what will make me feel better. My son does the best he can in this area, but he doesn’t tell me what I should do to feel better. He asks if there is anything that will help – “Will a bath help?” “Will an ice pack help?” “Will your heating pad help?” “Will your TENS unit help?”

I’m not asking for your pity. I’m asking for your understanding and compassion. If you really want to help me, just talk to me, make me laugh, focus on my abilities instead of my disabilities. If I need to vent, just listen (and it helps to validate my ventings). There is no right thing to say. In fact, more often than not there is nothing that can be said to make things right, make me feel better physically, or change my life or perspective. But one happy or funny moment could change my day. However, saying nothing at all, not even trying, can hurt me deeply. I am, after all, human.

If I’m crying, it’s still okay to talk to me. I don’t cry (much) from the pain. I mostly cry because I’m stressed out, exhausted, overwhelmed, angry, feeling emotional, or just plain frustrated. Sometimes it’s just one remark that sends me over the edge. At any rate, I cannot control this any more than I can control the weather. Again, I only ask for your understanding and compassion.

In short, don’t avoid me because you don’t want to deal with my issues. I won’t force them on you and, for the most part, won’t even mention them until you ask. Unless you’re my Momma. I seem to unload all my pain and symptoms onto my Momma because she’ll actually listen to me and not judge.

Which brings me to my final rant: don’t judge me. I don’t have control over my symptoms, which includes my inability to remember what I need to do as well as function as a normal person.

Keep in mind that Fibromyalgia it is incurable. And ask anybody who suffers from FMS and they will tell you that it is, for the most part, resistant to medications. If I had to list the number of medications I have to take in order to function (and I use that term lightly), you would be shocked. But, please, don’t tell me that I take too much medication. I have ONE doctor prescribing this medication to me, we review my prescriptions every time I see him, and, as he spent years in medical school to become a doctor, I trust his opinion. Leave my medications to him, as he knows what he’s doing and has my best interests at heart.

I can understand that maybe some feel FMS is not such a big deal. After all, it’s not cancer. It’s not heart disease. So, it’s not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. Dr. Jack Kavorkian assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don’t say this to fibro sufferers. This is not a harmless disease.

While people who do not suffer from Fibromyalgia, Chronic Fatigue Syndrome, scoliosis, or any other invisible chronic illness may have a lot of advice for those of who do, we ask that you, unless you are a doctor or pain management specialist in the treatment of these diseases and disorders, please keep it to yourself. We are doing the best we can to manage with what we are given. We don’t want your advice; we don’t want your pity. We want your love, your understanding, your company, and your support.

National Invisible Chronic Illness Awareness Week is essential to help those who do not suffer to understand; and crucial to those who do suffer to find camaraderie.

Jessica Barto has suffered from symptoms of FMS and CFS since she was a teenager. Was diagnosed with Spondylolisthesis in 1993, and FMS in 2007. She invites you to visit her blog, Fibro Blog.

Popularity: 13% [?]

Reevaluate Your Methods of Getting What You Want

The following is an excerpt from the book Despite Lupus. This blog post was submitted by the author and is used with her permission.

Since the day of your diagnosis, you’ve wanted one thing only: a life free of lupus. You’ve prayed and begged for your chronic illness to go away, knowing that would be the easiest way to regain your familiar way of life.

You may even have made a few bargains along the way, saying “If my disease would miraculously go away, I promise I’ll never [blank] again.” But frustration has set in because your wishes haven’t been granted. In fact, it may seem like your pleas are being ignored. You wonder what part of “Heal Me” God doesn’t understand. Perhaps this is a better question to ask: what part of the puzzle don’t you understand?

Right now, you see a complete physical healing as the only assurance of regaining a life worth living. But what if a perfectly-functioning body isn’t yours to have at the present time? More importantly, what if it doesn’t solve the larger issue that looms over you – the long-term emotional effects of being diagnosed with a chronic illness?

You’re a different person than you were before lupus arrived; denying that is ignoring the essence of who you have become. The remedy for the hopelessness you feel due to your physical ailments may lie in an emotional contentment you haven’t yet considered.

I found the same to be true in my struggles with lupus. Every day for years, I prayed that God would heal my broken down body. I wasn’t expecting a miracle, but I had come to believe that, if I were patient enough, I would get the physical healing I wanted.

As the disease worsened, I grew more discouraged. Why wasn’t God listening to me? Maybe I wasn’t being clear enough. Or maybe it wasn’t a healing I needed, but an understanding of what was realistically in my future. By changing my focus, my frustrations caused by having made such little physical progress went away, replaced with an appreciation for the emotional acceptance I instantly was capable of achieving.

“Prayer is not asking for what you think you want, but asking to be changed in ways you can’t imagine.”

Instead of perpetuating the short-sighted, limited notions of how you can physically mend your broken body, start working toward that which can be realized immediately – a healthy acceptance of where you are in your life today. You’ll no longer be chasing a hopeless, unreachable goal of living well without lupus. Your objective will become living well, despite lupus.

***

Excerpt taken from Sara Gorman’s book, Despite Lupus: How to Live Well with a Chronic Illness. Log on to www.despitelupus.com to find out more.

Quote taken from Anne LaMott’s book, Grace (Eventually): Thoughts on Faith, as reprinted in the “The Up Side” feature of the May 2007 issue of Guideposts magazine.

Sara Gorman was diagnosed in January of 2001 with systemic lupus at the age of 26. Determined not to let a chronic illness dictate her plans for the future, she refused to admit that her busy lifestyle and indomitable attitude were hindering her chances for a long, productive life. After four years of running her body into the ground, she realized she was fighting life, instead of living it. Thus, she made it her top priority to start living well, despite lupus.

The steps she took to regain the health and wellness she’d lost are outlined in her book, “Despite Lupus: How to Live Well with a Chronic Illness.” Quitting her job, postponing plans for pregnancy, and cutting off her hair (or what she had left) are just a few of the monumental, courageous steps she took to reach her goal of living well, despite lupus. www.despitelupus.com

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Dear World

Dear World,

I find myself so frustrated sometimes. I feel that others expect – or occasionally demand – more of me than I am able to do. It is in many ways my fault. I do not offer explanations or, when I do, they are often incomplete. I’ve always tried to ignore “You can’t be sick, you look fine” because it can be very hurtful. I’ve believed that anyone who thought that didn’t want to understand. But how can they, if I don’t explain?

I don’t want to bother anyone and I tend to ask for help only as a last resort. Someone recently told me that every time I deny someone the opportunity to help me, I deny them the opportunity to receive blessings.

My goal in writing this is part self-advocacy and part education. At least one of the medical conditions I have most people have never heard of.

Sjögren’s Syndrome is an auto-immune disease (I call it my body is trying to eat itself) that primarily effects the moisture producing glands in the body. Aww heck, I was going to try to explain it in my own words but the Sjögren’s Syndrome Foundation does a much better job than I ever could. I shall quote from their web site http://www.sjogrens.org:

Sjögren’s syndrome is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands…

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.”

Symptoms can be mild or severe; they may effect only the eyes and mouth or may be systemic; they may remain stable over time or worsen. I’ve been to two patient conferences on Sjögren’s so far and I have yet to meet any two people who experienced it in the same way. Part of that is because even in cases of primary Sjögren’s, it rarely seems to appear alone.

In my case, I also have fibromyalgia which more people are probably familiar with although it is as much an invisible illness as Sjogen’s is.

From WebMD:

Fibromyalgia syndrome affects the muscles and soft tissue. Fibromyalgia symptoms include chronic pain in the muscles, fatigue, sleep problems, and painful tender points or trigger points at certain parts of the body.”

Finally, I also have degenerative disk disease. I won’t be quoting for this one. I have scoliosis. When it got bad enough, they sliced me open and hooked rods to my spine to straighten it out. My spine proved to be as stubborn as I am and retaliated by curving the other way (kyphosis). It was severe enough to warrant correction; alternately I could do nothing and deal with pain from wedge shaped vertebrae later.

I didn’t know then what I know now, so I chose to correct it. I also couldn’t have predicted the accident three months after the surgery that fractured the last vertebrae in the fusion and ripped the hooks out. They used screws to reattach the rods, shoved me in a brace, and life was good.

What I know now that I didn’t know then: The fusion includes all but the lowest two vertebrae in my spine. These lucky vertebrae absorb all of my motions with no help from any of the others up until somewhere between my shoulder blades (T-6 for those that might mean something to). They are tired and worn out and not afraid to tell me about it.

That’s it for definitions. But I still need to translate all that into what it means for me.

My back (degenerative disk disease is too much of a mouthful and with henceforth not be used) is something I’ve been dealing with for a long time. I can’t stand for very long, I can’t walk very far, I can’t sit for very long. When I do sit, I really need something to lean against and some way to take my feet off the ground.

I don’t understand the exact mechanics of why those things help other than it takes pressure off places that get really irritated. Sometimes my back hurts a little, sometimes it hurts a lot, rarely it hurts not at all. Every once in a while, when it’s in a really bad mood over something, the muscles start spasming. On occasion when this happens I have been known to fall down.

Although I don’t know exactly what causes it to happen because it happens so fast, I do know that when it happens, I can’t stand myself back up. “I’ve fallen and can’t get up” is alive and well. Thankfully, that happens very, very rarely.

There are things I may be able to do to help with my back in general but they have to wait. I have more pressing concerns.

I miss the days when that was all I had to worry about although I didn’t appreciate them at the time.

Sjögren’s and fibromyalgia added a lot of new fun elements to my life.

• They are not curable.
• Doctors can only treat the symptoms. Figuring out what is causing a new symptom tends to be very frustrating for me and my doctors but knowing if there is an actual treatable cause is important.
• Some symptoms are obviously
• one or the other but some could be either. This complicates diagnosis and treatment exponentially.
  They both cause fatigue
• They both can cause widespread pain.
• Carpal tunnel syndrome has recently been added to my ever growing lists of diagnoses, but I’m in denial about it.

When I was first diagnosed, I was falling asleep every time I stopped moving. It turned out that was because my B12 levels were almost non-existent. I don’t understand how auto-immune diseases effect vitamin levels and cause that to happen. Many B12 shots later, it’s fine and my Vitamin D level has tanked.

Until that is back to normal and stabilized, there is no way to assess if my current medication levels are adequate. There is also no way to determine if what appears to be new symptoms are actually symptoms or manifestations of the deficiency.

Compared to where I was when I was first diagnosed, I am light years better.
I used to hermit because I didn’t have the energy to talk to people. Now I cave maybe 45% of the time.

• My brain doesn’t get up and walk out anymore as long as I keep stress to a dull roar.
• Everything still takes me ages longer than it should, but I do a lot more.
• I know the price I will pay if I do too much and I can usually identify “too much.”
• I have good days and bad days but as long as I don’t do “too much,” most of my days are average.
• You will probably never see me on a bad day.
• I am often tired but I’m happy that I can stop moving without falling asleep.
• I used to hate having to drive anywhere and refuse to get on the freeway because I was an absolute menace. I couldn’t concentrate well enough. I’m probably still a menace but, if I am, I don’t know it.
• I do not admit to pain if I can in any way avoid it.
• I do not know if I will ever be “better” but I will not give up trying. I can only do so much, though. If I don’t have the energy, I don’t have the energy. I will drive if I am tired – within limits. Some places are not always too far but can be when I am not feeling well. Not feeling well has many definitions and extremes. Some days making it out of bed is a victory and all I can ask of myself. Other days, I feel so great that it is hard to remember that I need to keep my activity to a dull roar.

So when you ask me to do something .. please remember .. if I’ve tried and stopped trying, there’s probably a reason. If I haven’t tried yet and it is something that won’t cause me physical harm, I’m usually willing to. If I tell you that I’m doing the best I can, then I believe I am. Maybe I can do better, maybe there is something I haven’t thought of yet. Maybe you have a suggestion that will help me. I’m willing to try.

But.

I put enough pressure on myself for three people. My stress level is typically at least at a simmer if not a slow boil because I still expect myself to be who I was even though I know I can’t be. I’m still learning. Your expectations (and, rarely, demand-feeling-things) only make things worse when I cannot live up to them. Stress is bad for both fibro and sjogren’s. It hurts. It’s exhausting. I get less done in more time which makes more stress and so on and so forth until it knocks me on my butt.

I am more likely to meet expectations – yours and mine – when everyone, including me, stops trying to pressure me.

I hope I made sense. I hope I explained. If you have any questions, please ask me. I will do my best to answer.

National Invisible Chronic Illness Awareness WeeK an important way for us to share information. The more we know, the more we continue to learn, the better we’re able to cope with these illnesses and understand each other as people.

Fiona is just a person who happens to have Sjogren’s Syndrome, Fibromyalgia, and Degenerative Disk Disease. She’s learning that she can’t pretend to be Superwoman anymore, much less actually be her. It is a hard lesson to learn, and even harder sometimes to explain – but sharing information is so vital.

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The Importance of a Good Support System

If you live with fibromyalgia, neuropathy, CFS, MPS, or another “invisible pain illness” there is no doubt you may come across naysayers, negative Nancy’s, friends and family who in the least don’t understand what you are going through, in the worst… don’t believe you.

Let’s face the truth, it’s easier to empathize with illnesses you can see or even are more prevalent, like cancer, heart attack, or stroke. The web site www.fibrohugs.com has an excellent “letter to normals” that I believe should be a must read for everyone, especially those who deal with fibromites in their family, friends, and even coworkers.

When I worked for a certain, now bought out, aircraft parts manufacturer, in sales, I sold 1 million dollars a year more than the next closest sales rep. But, all my boss could see was I had more sick days than anyone else. My last job was at the Disney Reservation center where I had an excellent, extremely understanding boss (he had gout so he sympathized!) who knew how hard it was for me to leave my job there, I loved it so.

So, if you don’t have support at home, work, or in your circle, what should you do? An excellent question.

I found an amazing support group online. Soulten’s fibro support is my favorite. This group of people are not only my online support group. They are my online family. Most of these people I met in the fibromyalgia chat room on www.prohealth.com. They do not all have fibro, some have depression, are bipolar, or have neuropathy like me. They are from all over the world, and I don’t think I would have made it through the past year without having their support.

One of the hardest things I had to learn was to kick the negative Nancy’s to the curb. I cleaned house of the people who refused to believe my illness is not “all in my head”. As hard as cleaing my life of these people were, and in some cases they were really long term friendships, I had to. No one should have to prove they are ill. You wouldn’t ask a cancer patient to see their chemo treatment for proof would you?

I want to thank my support system. I have the most amazing husband who works 50-60 hours a week, takes care of me and our home too. Sweetie, you are my rock and I love you. To my best friends who I am realizing worry way too much about me and are always there to lend help, even from an hour away! And, lastly to my friend, neighbor, and sister Nan.

Some days I don’t know what I’d do without you. You will never know how much the simple act of unloading and reloading my dishwasher means to me… and for that and all the other things you do for me (including picking up my prescriptions in the pouring rain) I love you (and u are NOT a negative Nancy!).

Michele Kellenbenz is a fibromyaliga and neuropathy fighter. Michele blogs her struggle, accomplishments, and tricks for fighting the good fight against these invisible illnesses. Her hope is through her blog others will learn from her mistakes and not end up in the same situation. She is currently working on her first appeal for disability. When her hands are cooperative she also likes to work on transforming recipes from sugar to splenda, and makes gorgeous beaded jewelry. You will find Michele’s blog at http://ramblingsofinsanemind.blogspot.com. Also, make sure you follow her at http://twitter.com/chelekell.

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In Order To Appear Invisible, You Have To Be Invisible

I have, if only inadvertently, become very vocal about my illnesses (lupus and rheumatoid arthritis). When I started blogging 15 months ago, I never expected that I would become part of a virtual community of chronically ill people who are trying to raise awareness of the profound impact that illness has on patients, their families, and their friends.

I have made many friends this way, and while these alliances have become a cornerstone in helping me deal with my own illnesses, I find that I continue to do battle on a daily basis with the “outside” world, those in my immediate surroundings who are not chronically ill.

Here is an example:

Earlier this summer, I became acutely ill with a cough that I couldn’t shake. And it wasn’t until I was hacking up a lung that “normal” people started to take notice.

“Oh, are you sick,” they would ask. “You sound sick.”

And what I really felt like saying was, “I’m sick 100% of the time. This is just the 1% you’ve decided to notice.”

This is the exception rather than the rule.

The irony here is that it’s what was going on inside of me that matters. It wasn’t the fact that I was coughing up a lung (or at least sounded like I was). It was the fact that this occurred after going to the hospital for a doctor’s appointment, after riding the city bus. It is, in fact, the very invisible nature of my illnesses that were at play here. They had just decided to show themselves in a very visible, vocal way.

Those events wouldn’t cause “normal” people to get sick.

But if doctors haven’t been trained to look much deeper than giant, flashing tumors, why would we expect the rest of the world to? In many ways, illness is in the eye of the beholder.

My own mother refuses to see me as a “sick person.” But the truth is, these illnesses are my life. My life has become these illnesses. And for better or for worse, I live out each day, good or bad, because of these illnesses.

Yes, ignorance frustrates me. Because our world hasn’t been conditioned to believe in the possibility that young people can be sick – because this plays on our worst fears that the world is not a just, fair, or kind place – and that people in the prime of their lives can be struck down with no warning, with seemingly no reason, and lives can be forever changed, altered beyond comprehension.

And it also frustrates me that by virtue of that inability to understand, I am supposed to be strong, brave, resilient – any number of adjectives that describe youth and longevity. Yes, somehow, on the days when I am in so much pain that I can’t lift a half-gallon of milk to pour for my cereal, I am supposed to be strong and brave, and think that this is just some adolescent phase that I’ll grow out of?

But even for someone like me, who blogs about my illnesses, whose posts are fed through facebook, there are times when invisibility can be a good thing. When I travel to California in August, there is a very good chance that I will be wearing a mask on the plane.

I haven’t been on a plane in nearly seven years. And I’ve never had to wear a mask before. Anywhere. The thought fills me with dread – everyone is going to look and me and wonder what’s wrong with me. But given my susceptibility level, it seems like a prudent measure that I need to take.

It makes me realize that sometimes, invisibility is a luxury. The fact that I don’t have to wear illness on my sleeve all the time, while this tends to promote ignorance and unfeeling, also thwarts questions, long glances of sympathy and pity. It allows me to be in my own insular world of lupus and rheumatoid arthritis, while the rest of the world is kept at arms length, think that everything is just fine.

You don’t know what you’ve got ‘til it’s gone…

National Invisible Chronic Illness Awareness Week is important because no one is immune to illness – it can happen to anyone, anywhere, at any time – and by sharing our stories, we help to show that it is possible to live in the face of illness.

Leslie Rott is 23 years old. In April of 2008, at the age of 22, she was diagnosed with lupus and rheumatoid arthritis. She holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently working on her Ph.D. in Sociology at the U of M. She currently authors the blog Getting Closer To Myself, which chronicles her journey with chronic and invisible illness.

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