you don't look sick

“But you don’t look sick,” my friend said in disbelief when I told her I was diagnosed with Sjogren’s Syndrome, an autoimmune disease, along with Fibromyalgia. She’s not the only one who has said that, either. It has been a common thread among those I’ve told my story to.

I’m not complaining. I don’t want to look sick; it doesn’t appeal to my vanity. The problem is that people don’t believe I’m very ill at all. There are days, plenty of days that I look sick. I’m usually in terrible pain and laid up in bed with my heating pads and a cup of tea, with my dogs at my side.

Sjogren’s Syndrome isn’t well known. I’m starting to think only doctors and dentists have heard of it unless it has touched a person’s family. So, when I say, “I have Sjogren’s Syndrome.” Some people say, “You have WHAT? I’ve never heard of it. Are you sure that’s what it’s called?” No, I’m just calling it that for fun. Why would I make up a name like Sjogren’s?

Sjogren’s Syndrome can be very aggressive. For starters, it’s a chronic autoimmune disease in which the person’s white blood cells attack their moisture-producing glands. It causes joint pain, and can cause many problems throughout the body.

People may be more familiar with Fibromyalgia (from the commercials on television) but they don’t necessarily know much about it or believe that it’s real. Many people believe it to be depression, or in the person’s head, not real pain.

Fibromyalgia is real pain. It’s long-term body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia is often linked to Chronic Fatigue Syndrome, depression, migraines and anxiety.

When I went on disability I was depressed. I loved teaching but I was in too much pain by lunchtime to make it through the day. To boost my spirits I decided to have my hair done. I loved talking to my hairdresser, so I told him all about my diagnosis and that I was no longer teaching and he said, “Come on, this stuff is all in your head, isn’t it? Just shake it off.”

If I could just “shake it off,” or go to a counselor, maybe even take antidepressants to feel better I would. And I have. Just because there are no outward signs, or someone doesn’t look sick, doesn’t mean they aren’t suffering. We all show our pain and suffering in different ways.

“But you don’t look sick,” an old friend said. “And you’re up and about pretty well for someone so sick.”

I guess she didn’t notice the cane I was using. “I have my good days.” 

I’m not sure if it’s just the people I know or if people everywhere have lost their basic sensitivity. Empathy and tact are gone and have been replaced with back handed compliments and such.

“Are you contagious,” my cousin asked, trying not to get too close to me just in case I was.

I was tempted to stand very close to him and sneeze. Instead I assured him that I wasn’t contagious.                                                                                                                                                                  

“Well, you don’t look sick anyway,” he grumbled under his breath and got away from me as fast as possible.

Most of the people in my circle didn’t know what to say to me when they found out I had Sjogren’s Syndrome and Fibromyalgia. I had gone through what felt like a million tests before I was officially diagnosed with Sjogren’s  After that it seemed like the first thing anyone said to me was, “I never knew you were sick!” I responded with, “Neither did I!” 

All snappy comments aside, there are times when people just cross the line from polite and concerned to rude and insensitive.

After I went on disability the journalism students where I taught wrote a lovely article for the front page of the school newspaper about why I had to leave school. Soon after that I ran into a former colleague of mine, an English teacher. She asked me where I’d been. Obviously she didn’t read the school paper, so I told her my story.

“I never knew you were sick!” she proclaimed. “I saw you almost everyday and you always seemed fine to me.”

I told her how I was always in pain and how I was suffering from extremely dry mouth and eyes, that I had migraines and all sorts of problems.  I told her how it keeps getting worse.

She looked me up and down and shook her head. “You didn’t seem sick then and you don’t look sick now.”

“I guess I’m lucky. I would hate to look sick,” I retort. Just as I finish my last word she had her iPhone out and was on facebook gossiping, I mean sharing, about seeing me.

Even friends can be insensitive at times. The people besides your immediate family that know the details of your life and your illnesses, the ones you might have cried to or confessed your fears to, throw empathy in the garbage and slam the door on tact once in a while.

“You’re so lucky! You get to stay home every day instead of going to work. You’ve got the life! No responsibilities, just laying around all day taking naps whenever you want to,” a friend of mine said.

What luck I have! I have pain all the time. Bad pain. I still have plenty of responsibilities along with dry eyes, no saliva and pain. But I have heating pads and a hot water bottle, and pillows to situate myself in a comfortable position (if there is one).

Actually, I am very fortunate even though I have Sjogren’s Syndrome and Fibromyalgia. I certainly have ways to spice up conversations, and, no, I’m not contagious. But, for the record, I’m glad I don’t look sick.

peace and love,

sunee

the rest of my day

When I was learning to write plays my mentor said that I couldn't break the rules until I learned the rules. I needed to learn the tried and true way that playwrights for centuries had successfully crafted plays before I went off on my own merry way and tried new things.

I'm learning that the same is true for, well, just about everything. But, what I was thinking about today has been taking care of myself.

While I was resting today, which is still a fairly new concept for me, I was reminiscing about different chapters of my life and I realized that I was a little bit of a rebel. I knew the rules, and I always seemed to get the desired outcome, in fact I was a perfectionist, but the paths I took to get there weren't the straight and narrow.

Not that I was unorthodox in my ways. Even I am cracking a smile when I read that. I didn't do anything strange. I'm just a rule bender. However, I firmly believe in what my mentor taught me about learning, even mastering, the right way first.

All of this brings me to taking care of myself. As a care giver by nature, I spent the majority of my life worrying about the needs of others. I still spend the majority of my life caring for others and worrying about their needs, but a change is taking place.

I started putting myself first (to the best of my ability) when I first got sick. I spent my days resting- not really by choice, and doing the things I knew I needed to in order to feel and be as well as possible.

But life gets busy. Things happen that shake up our routines. I'll get back on track with my routine tomorrow doesn't always happen.

And before I became a master, or even proficient, at taking care of myself I was bending all of the rules until they broke. How can you even take good care of yourself if you don't make yourself a priority?

Fortunately, one of the components of both Sjogren's Syndrome and fibromyalgia is chronic fatigue. It is unfortunate for those planning to work and be out in the world, but for me it is the driving force behind my resting daily. 

I didn't know how to slow down, let alone stop, without something making me. The fatigue had been forcing me to rest for the first couple of years, but I fought it. Today as I got comfy and closed my eyes, letting the fatigue set in, I realized that I had been fighting the wrong battle.

I'm one of the lucky ones. I am surrounded by people who want me to take care of myself. There's no guilt or resentment. The only one keeping me from allowing my pained and fatigued body the rest and relaxation it required was me and some over developed sense that I needed to do more than simply be me.

The more rest I get the clearer my thinking becomes. I guess you can't bend the rules in everything. And, why should I? So the kitchen is a little cleaner? I can save it for a day I feel stronger. There are no rewards for pushing myself- except more pain and upset family members.

I didn't chose to get sick and there is nothing I can do to change it. (That's controversial. However, traditional medicine offers no cure for my autoimmune disease. I'm researching non-traditional medicinal choices.) What I can do is accept what is and work with it instead of fighting against it.

As a rule bender by nature, this has been an education for me. There's no round about way to getting rest. You rest to get rest. And when you let yourself enjoy it, rest can be a wonderful thing. Who knew? Clearly everyone but me.

Taking care of myself is more than just resting. Following all of my different doctors orders. It's eating right and staying hydrated. Cutting out certain foods and coffee (ops!). Trying to get some exercise. Keeping myself spiritually and emotionally healthy. Having creative outlets. Et cetera...

However, the most important aspect is rest. Not only does it help keep my strength up and possibly my pain down, it helps me think rationally. If I'm thinking rationally it is far easier to deal with the worst pain than when I'm exhausted. That's just the facts.

So, now instead of fighting fatigue I'll be spending the afternoons with a large stack of pillows (and possibly a heating pad or two) and my dogs, taking good care of myself. And I used to look at rest as a bad thing!

peace and love,
sunee

beware of super powers

I'm starting to get really burned up about all of the ridiculous faulty advertising. Do the powers that be have no shame?

I guess it's not the fault of the TV stations and the magazines. It's the companies themselves. Maybe it's on us, the consumers of such products, for shamelessly believing in them.

It is quite possible that two Aleve help a basketball coach through the school day, but I am going to tell you that taking Lyrica isn't going to make you feel well enough to go to the job site or host a large party if you feel like I do before you start taking it.

I'm not bashing the product. It does help. It just doesn't necessarily take a person from bed ridden back to the working world- even if it is taken as part of what I like to refer to as my fibro cocktail, which is in no way to be confused with my Sjogren's selection of pharmaceuticals (none of which are actually designed for Sjogren's because there are NO medications specifically for Sjogren's Syndrome). 

In an article in my Sjogren's Syndrome magazine it discussed ways to think yourself back to an active, well life. The key was acceptance. I was in agreement about the acceptance, but then it lost me.

Acceptance made the difference between my happiness and my life being full of pain and confusion and sadness. Once I accepted what was happening to me I found that I could still enjoy the most important pleasures in my life- my family, my writing, reading and my addiction to a few TV shows.

The article suggested that after each flare you get back on the road to healing quicker and quicker each time. You may get side tracked, but you'll jump back on track and a' healing you will go.

They probably want us to take some Lyrica and build a path we all can follow to the healing place. Once there we will bounce back from a flare like one of those basketballs from the Aleve commercial.

I'm not pessimistic. I'm not negative. (I'm actually very optimistic.) I just don't want our need for something to make these horrible, chronic pain conditions and diseases better that we start believing they have super powers.

It's just good to keep perspective.

peace and love,
sunee

it's ok to say no

It's hard for me to say no. I'm a yes person. 

Although that's good in many ways (ask my children) it's not always good for me.

I am learning that in order to take care of myself I need to say no to people sometimes. If you're like me, you feel obligated to say yes to every single request made of you.

Even though I'm ill people still ask me for favors. And, even though I'm ill, I still say yes way more often than I should. Like always.

Or, I feel obligated to say yes to a social event, even lunch with a friend or a phone call,   when I feel my very worst.

I am starting to let people know I'm more likely to be social or helpful during the day. I haven't worked up to "no" in all circumstances that don't work for me yet. Besides, I may want to- as long as it isn't depleting me of everything I've got (which isn't hard to do).

My point is that it's okay, more than okay, to say no. We have to put ourselves first. No one else is putting us first, so we have to do it. And when we do we feel a little bit better because we aren't stretched out in a bunch of different directions.

Putting ourselves first isn't selfish. It's okay to take care of ourselves and that often means we have to say no to the requests of others, whether it is to do favors for them or to hang out when we don't feel up to it.

I know it's okay to just take care of myself. When I feel good I'm always up to seeing, or at least talking, to my friends. And if I have to say no to something, it's always for a good reason.

I guess it's just a matter of paying attention to ourselves. The people who really care about us will understand.

peace and love,
sunee

forgiveness

Forgiveness seems so simple yet can be so powerful. To me, the ability to forgive is one of the most important qualities a person can have. Forgiveness can be extremely difficult at times, especially forgiving ourselves.

It isn't always as simple as saying, "No worries," or, "I'm sorry," to the person (or people) involved when we've made a mistake.  But, it shouldn't necessarily be a major pride swallowing event, either. 

(I won't even get into the whole pride and humility thing - right now, at least - suffice to say that the prideful may have a little more trouble with even a simple apology.)

I have always forgiven easily. Now that I'm ill I don't want to waste a single moment of my life  being angry. 

I'm certainly not suggesting that anyone brush things under the rug so no one is angry anymore. Because, they are. It is always worse when we lift that rug up and without a doubt that rug will have to be lifted at some point.

Say we accidentally hurt someone's feelings. Whether it was something we said or something we did, when we unintentionally hurt someone one in any way, I believe asking for forgiveness shows I value their feelings and our relationship.

The hardest person for me to forgive is myself. If I say the wrong thing or do the wrong thing, I will get much more angry with myself than I ever could with anyone else. I never cut myself any slack, even when I'm in terrible pain, for anything.

I'm learning to forgive myself. When I do it's like that proverbial weight that's been lifted off my shoulders. I become a more compassionate person, not anywhere near perfect, but better and better as I go along if I continue to treat myself, and others, with compassion, kindness and love.

We are only human. All of us. We mess up sometimes. Sometimes in a big way. If we try forgiving ourselves and others maybe people will have compassion and forgive us when we need it. Not that we'll need it...

peace and love,
sunee

give and take

I have been called stubborn many times in my life, and I'm apt to agree when it, but I'm also very open to compromise. 

Granted, my willingness to compromise improved dramatically when I got sick, but I am willing now and that's what matters.

I don't want to be stuck in my stubborn spot alone, unwilling to yield to the wants of others. I don't mean if someone needs me- if that's the case I'll always compromise. 

Having Sjogren's Syndrome and fibromyalgia has taught me a lot about living. I used to be more rigid with my time. I would adjust to other people's problems and circumstances but made no consolation for myself, no matter what.

I used to keep a very busy schedule with long work hours, leaving me no time to take care of myself or relax. There was no wiggle room in my schedule to squeeze in even a coffee with a friend.

I have learned that there is a balance, a compromise, between work, rest and other pursuits a person might have. Now that I don't work I get it. At least I allow myself time to pursue writing now. I squeezed writing in where ever I could before. 

Both the Sjogren's and the fibro have taught me to be flexible when making plans and schedules for myself- even if that plan is simply to do the laundry. Some days I don't feel well enough to tackle even that load of laundry, and it's nothing to get upset over (that's a whole different topic!) but I used to let things like that upset me.

When I can't keep my schedule to write because of pain I try to keep my mind open to compromise. I don't want to get all stressed out and mad, only to have more pain. On those days I'm trying to compromise. I use that time to read about writing. (And if I don't feel up to reading I really don't mind that I'm not on schedule anymore!)

Being better at compromising has saved me from being stressed or bummed out over countless things that haven't gone my way at home. For the longest time I have wanted to create a lovely reading space in my house. 

It would be a smallish area, cozy with a huge bookshelf filled with all of my favorite books. Next to that would be a chaise lounge or over sized chair and a little side table big enough to hold my coffee or tea. 

That isn't going to happen. I could be pissy, angry and sad over it, or I can make the best of my situation. I can, however, put a nice sized book shelf in my bedroom and read on my patio when the weather is nice. It isn't what I planned, but I can make it work and be happy. 

I have been thinking a lot about compromising. I wonder if I set a good example of being flexible- of rolling with what happens, what is, rather than some ideal I have in my mind. Life is always give and take. That give and take, I think, is where a lot of the goodness we never expected is.

Hopefully I'll be willing to compromise the next time I'm stuck. I plan to be. I plan to give, and quite possibly take. And, it' okay. Nothing will be lost in the translation. 

peace and love,
sunee

the view of happiness

No matter how hard we try, the way we view ourselves influences the way we respond to everything around us. 

At every age, it seems, our self image in some way, tested. I don't mean we're put in a peer group situation in which the one with the most expensive shoes (or car, house, boat, et cetera) is the coolest, though it can certainly feel that way. Even at my age. 

It doesn't matter how old we are-  most of us still compare ourselves to others in one way or another. We also often judge the intangibles, like natural talents, and set bars so high we could never meet them. We mess with our heads by saying you're not good enough,  pretty enough, wealthy enough, or just enough period.

Many of us have a pretty good, or at the very least alright, self image. We're proud of our accomplishments and bummed about our failures. We're envious of some people and feel "better" than others. It's okay, it's true. most of us have felt that way at some point, if not in the last week.

Once I became ill that should have all stopped. But, being a perfectionist with unrealistic expectations of myself, I felt that I'd lost all that was valuable that I could contribute. My self image was at an all time low. 

Time passed and my self image went from bad to worse, yet I was getting more and more sick. I couldn't see that my disease had taken my career away, not "me" away. All of the good I had built inside of me in my life had begun to crumble, the structure shaky, my physical self pained, sick, heavy with sadness.

Now I am almost at the other side of that low time, climbing up step by step, watching the view of myself, my self image, come back into clear focus. My physical body is still pained and sick, but that heaviness isn't so suffocating.

Whether you are the most stable person, or you're like me and you've never been considered stable, self image is still one of the key ingredients to happiness. When we like ourselves, feel good enough in all the ways that matter,  we can be happy no matter what is, even if what is happens to be illness.

I'd have to say it's worth examining one's self imagine. There's happiness sitting at our feet but we may not see it due to a cloudy image.

peace & love,
sunee

long time, no blog

Hello again! It's nice to be back. It has been a long time, but it wasn't spent in vain. In hindsight I find it would have been a perfect time to share what I was going through, alas, regrets just add unnecessary lines to our faces and heaviness to our hearts.

Although I felt I had nothing to share I did continue to write, even in an online course, to hone my skills and to continue to grow as a writer.

I didn't transition as well as I thought I did- from teacher to writer was easy enough, I've been waiting to be a "writer" since I was as young as I can remember! It was the transition from "regular" person to "sick" person that threw me for a loop. 

I thought I was dealing with it well, that I had a lot of positive things to say, however, I couldn't apply those positive things to myself.

I'm starting to feel like my old self again in many ways, yet my life is completely different now. We adapt- we stretch, we grow, we go on. We have to. 

I look forward to sharing my journey.

peace & love,
sunee