Don't overdo it

If you're like me you might make a mental list (or a real one) of all of things you want to accomplish each day. It's a very organized way to live, but not necessarily the right one for those of us with Fibromyalgia and other chronic pain disorders.

We can only do what we can do. Maybe the laundry won't get done or the dusting won't get done. I'm always going on about prioritizing, but let's be honest- sometimes we just can't do any of it. Trying to do it all when we're not even up to the simple tasks will only lead to more pain. In fact, it may lay us up longer and than nothing gets done for quite some time.

It's ok to take the day off when you need it. It's ok for me to take the day off when I need it. It's not ok to suffer through chores like a martyr. No one wants to be around that, and, truly, do we want to be that person? Thinking of how I sound when I'm in martyr mode brings a feeling of embarrassment to me and reminds me not to be one.

I guess I'm writing this as much for me as I am for anyone who reads it. No matter what our conditions or life situations, sometimes we need to slow down and just be.

Overdoing it might be in our nature, but we don't have to follow through on it. It leads to crankiness, horrible pain and exhaustion. (And much more than I'm listing.)

I believe no one likes a cranky martyr. People around us appreciate when we have to take care of ourselves and are happy to see us feeling better. No family member wants to hear complaining about how much we did and the painful results.

It's our responsibility to take care of ourselves. Take time off. Rest when you need to. Delegate a few chores. I plan to as well.

peace and love,

sunee

Fibromyalgia complicates things

It isn't news to anyone with Fibromyalgia that it complicates every aspect of our lives.

Fibromyalgia limits us and what we want to do. It puts a strain on marriages and families. It is a financial drain, with prescriptions, co-pays, and for those of us looking for outside relief, acupuncture, massage and any other treatments.

Unfortunately, these are things that can add to depression that many of us struggle with already.

How can we deal with such things on top of often severe pain, and, if you're like me, the complications and additional pain of an autoimmune disease?

One thing that has always worked for me is the triage system. Much like at the hospital where they take the worst cases first, I try to figure out what is essential for me to deal with. I prioritize based on how I'm feeling how truly important each thing is. I make lists.

Maybe it's a very bad day, with excessive pain and fatigue. I don't handle emotional things on these days because I'm prone to anxiety and I increase my pain by getting upset. Kindly ask the family member if you can deal with the issue at a later date, if possible. If not, just try to keep breathing and don't let pain dictate what you say. This is a huge struggle for me.

On bad days I do what I can. That might mean the laundry doesn't get done. Or maybe I cannot do anything but rest that day. I need to communicate with my family and set boundaries. When I do that, there are fewer expectations and a better flow with everyone. Without communicating our needs, no one knows and might expect of us things we cannot do at that time.

As far as the financial strain, I try to budget in every way possible to keep costs down. I'm even considering mail order prescriptions to say some money. Disability is often hard to get, but we need to investigate every avenue and fight for what we deserve. Severe pain is disabling. If you're able to work, all the better. But health comes first.

I rest enough so that I can have quality time with my husband when possible and also with the rest of my family. We don't want to become that person who always complains and makes everyone uncomfortable if we want to keep our families strong and together. That doesn't mean keeping quiet about our pain and ailments, it means being more than that. Talking to them about them. Being a loved one, not a needy one can be difficult. But I think it's essential to having good family life. This is another struggle of mine I work on daily.

It isn't easy. I'm not working and it's hard to juggle all of life's difficulties without getting stressed out, but we can't afford to feel sorry for ourselves and create negative energy that leads to more pain.

We all have to find a way to balance our lives and make things a little easier on ourselves. We need to give ourselves a break.

I have no real answers. I'm like the millions of sufferers looking for ways to improve my life.

I hope this gives you some helpful ideas and finds you pain free.

peace and love,

sunee

it's ok to slow down with Fibromyalgia

Today I wanted to do a long list of things. Some were semi-important. Some were just chores that, of course, can wait. When I felt extreme fatigue set in, followed by pretty bad pain and an upset stomach, I knew I couldn't do it all.

I'm learning that it's okay not to do it all. I have to take care of myself or I cannot do anything for anyone, especially myself.

If you're at all like me you want to be and do everything. Finding out that I can't has been almost as hard of an adjustment as dealing with the chronic pain and fatigue.

My first inclination was to beat myself up for what I didn't do. After all, I slept for three hours this afternoon. After looking back on the day, I know I made the right choice to rest.

Not that I had an option. Fatigue overtook me completely, my whole body was throbbing in pain and no part of me felt "right." There's no need to push myself when I can do what I need to tomorrow. Or the next day. I cannot dwell on what I didn't do.

I tend to stress myself into a panic over what I cannot do and increase my pain level dramatically when I dwell.

I can, however, feel good about caring for myself. It's our first responsibility if we have Fibro, other chronic pain conditions or other health issues.

Putting my health needs first has been quite difficult for me. I want to do it all, well, and make life easier for those I love.

Everyday I am making better choices for my overall health. I'm resting more. I keep a very slow-spaced lifestyle now. I try not to stress over the little things I didn't get done. I try to take it slow enough to enjoy all the little things I was to busy to enjoy before.

Everyday that I deal with these conditions I am learning more about myself. For those in the same boat we know that this may be the hardest part. We need to change so much about how we live and think.

The best thing about today is that I realized that nothing bad happened when I didn't get to all of the things on my list. I don't need to put myself through the pain of dwelling. It's more than okay to slow down and do what I can ease some of the pain and fatigue.

May we all slow down and enjoy the little things. It should help ease some of the pain and might just keep a smile on our faces. Besides, nothing beats an afternoon nap :)

peace and love,

sunee

happiness and Fibromyalgia?

Having Fibromyalgia often leads to depression. Although I don't know the medical reasons exactly, I know the two are connected. It's completely understandable. Being in constant pain, having extreme fatigue and feeling completely out of sorts can make anyone depressed.

Another reason I feel that I personally get depressed is because I know I cannot do all of the things I used to do or I want to do. I know my lack of energy and days I am in too much pain to do anything worries my family and that makes me very sad. Just having severe pain makes me sad.

But I have been thinking about this topic for a while now and it seems to me that I can still be happy despite having Fibromyalgia.

I still have a loving family I enjoy more than I can express. I may not be up to shopping trips with my daughter very often, or going out with the family for too many activities,but I can have a wonderful time just being with them.

I can still appreciate a beautiful day by sitting outdoors and reading or just relaxing. I can go sit at the beach :) I can hang out at home with my family and just talk or play a game or cook or just watch a movie and/or our favorite TV shows. After all, I'm addicted to Top Chef and the Food Network, as well as Wheel of Fortune. These are all things I watch with my daughter and my mother.

I can sit with my son and help him with homework or just talk. I can go for a drive with my husband. I can have friends come for a visit or just babble on the phone.

The list goes on and on. The reason I am pointing these things out stems from my belief that we can be happy in spite of having illnesses such as Fibromyalgia and Sjogren's Syndrome. It's the little everyday things that made me happy before and these things make me happy still.

I do fall into depressions but I use the tools I've been taught through counseling to lift myself up. I focus on what brings a smile to my face. When the pain is really intense I try not to fall into panic mode and, if no one is available to hang out with, I try to reflect on how blessed I am.

We don't need to be pain free to be happy. And we don't need to fall into a pain depression. It happens, of course, but we don't have to live there. We need to be present and enjoy all of the little things that make life good.

I thought of this while looking at old pictures. Seeing us smiling just hanging around the house reminded me of just how fun everyday life is. My happiest moments weren't all when I could direct a play with 40+ students. I enjoyed that very much. But I enjoy the funny little things my family says and just as much. Actually, I enjoy them more.

Happiness is where we look for it. It's for the taking despite pain.

May you find your everyday happiness every single day.

peace and love,

sunee

keeping a good attitude

Pain makes me anxious. Sometimes it makes me cranky. I have to admit though, the worse the pain, the more anxious I get until I often go into a full blown panic attack. It feels so scary to have pain that intense I cannot calm down enough to let the medication work and just wait it out.

Meditating or just watching TV would probably help, but when the pain reaches a certain point there's often no settling me down.

One major thing I want to work on is avoiding such ordeals. I'm a pretty positive gal, generally speaking. I look on the bright side and I make things work. What I need to work on is taking those good qualities and using them when I need them most.

Having my family see me freaking out doesn't make me feel very good about myself, though I try to shield them from it. Except my poor husband, who sees the real panic.

I don't often feel sorry for myself that I have pretty intense Fibromyalgia or Sjogren's Syndrome, even though I feel the effects daily. Lately at an elevated level. I'm not big on pity parties. They aren't fun, since no one comes and it sets a bad tone for the whole family.

There are so many things to be happy about, be thankful for and enjoy even when pain is at it's worse. Times when the pain is at it's worse might be a good time to focus on my children. Talk with them, watch a movie or, if I'm lucky, get them to play a game with me. It's a diversion and it connects me with what makes me the happiest.

Talking about nothing special, focusing on someone else, like my husband or my mom, and what is going on with them can get me out of myself. Once I've given my attention to someone or something else, I can stop focusing on the pain and enjoy my loved ones.

It doesn't always work. I'm not going to lie or negate the fact that the pain often overrides our best efforts to stay positive and fun. I do have to admit, however, that the more I at least try the better it is for everyone involved.

No one wants to live with someone that complains all of the time. They don't want to constantly hear how bad we feel or what we cannot do. We, of course, have to be honest and set limits, but we don't have to be a big negative influence everyone tries to avoid.

Most import for those of us with pain, a positive attitude helps lower pain levels. And, in my case and probably others, anxiety levels.

I've always been known for my "Sunee" disposition and I don't want that to change because I have chronic, ridiculously intense, pain.

May you find your happy spirit and stay positive and pain free.

peace and love,

sunee

pain and family life

We all know how pain effects us. We feel it everyday. We do whatever we can to ease it from acupuncture to strange diets to taking herbs and and just about anything that promises hope.

What we, or I, may sometimes forget is how difficult it is for our family members to live with someone in constant pain.

They may feel hopeless, as there is nothing they can do to help. They may feel angry that they have to deal with this every single day. They may not know how they feel.

It effects my whole family- my children, my husband and my mother. They show it in different ways at different times. It ranges from helpful to annoyed. And the fact is, I just need to accept that.

It may seem unfair that we suffer so much and we also have to watch how it is effecting our loved ones. I want sympathy and warmth man times when they can't give it anymore. I want to be alone to rest or deal with my pain quietly and they need attention.

We cannot predict how they will act, but I am learning that I cannot be a constant downer. I need to find ways to cope so it doesn't destroy my family. It's bad enough that they have to worry all of the time, but I don't ned to add to it.

And, let's face it, who wants to be pitied? I don't. I'm still an intelligent, fun, and sometimes funny person with a lot of love to give. I'm not just someone suffering from severe pain.

Someone who is ill or has a chronic pain condition doesn't have to destroy the fabric of their family. Everybody needs to work together to keep a positive, functioning flow of daily life.

I wish you the best.

peace and love,

sunee

pain and another day

I have no great advice regarding living with pain. I'm just a 43-year-old woman struggling with chronic pain. I can, however, tell you what I've learned from the mistakes I've made.

First of all, being in pain everyday is difficult for family and loved ones to see everyday. The don't know what to say anymore. They don't know what to do, even though al you might need is a hug, a few warm words of encouragement, to be heard.

For those of us living with chronic pain conditions there needs to be a way for us to vent, talk about how bad the pain is and release the built up anxiety and stress.

There's counseling, which I recommend. There's journaling, which I'm a huge fan of. We can find a confidant who isn't overwhelmed by our pain because they don't live with it day in and day out. We can reach out to others with similar conditions to learn ways to cope that we never thought of.

I suppose that my point is that families and loved ones can only take so much. It's a scary thought, but if we feel overwhelmed and hopeless in our pain imagine how they feel watching it every minute.

Yesterday I had a major anxiety in conjunction with a terrible flare up of pain. I cannot always control it, but boy did it cause chaos in my house. I learned a lot from it. I should have just taken slow deep breaths, taken a shower or bath, waiting for the pain medication to at least take the edge off. I would have hurt less and I would have hurt my family less.

I'm in terrible pain today. My legs are throbbing and my shoulders, arms and neck are burning with such deep pain I cannot describe it. So, I'll find a quiet activity (like writing) and rest with my heating pads. I don't need to complain or rant. I just need to breathe.

It shouldn't be miserable every minute when we have chronic pain.

peace and love,

sunee

the truth about pain

Contrary to my normal positive outlook on living with pain, I think it's time I admit that living with pain sucks.

Constant pain, throughout my entire body, rules my life. At the same time it ruins my family life. Since I am generally suffering from pain or other maladies it has become something I talk about apparently more than I should.

It has become a source of annoyance as well as worry. It has become an added burden to those I never wanted to do anything but give to. And, I still give- everything I have, even on my worst days.

But the truth is that it's my problem. My pain. My loss of identity because I feel like I'm no longer the bubbly, fun person I was. I am the person in pain. And, most likely, everyone (or almost everyone) is exhausted because of it.

Pain sucks.

Pain sucks the life out of me. I struggle everyday to be the person who has only love and kindness to give. I am still that person, but no one sees anything but the pain I am in.

I can no longer burden those I love with the details and accounts of my pain. I need other outlets (like blogging). I need the freedom to be sad, scared and anxious about it without destroying the emotional and mental health of those I love.

It's an empty place, but I plan to fill it up. I may be at my bottom, but acknowledging and being honest about how much I hurt (physically and emotionally) should free me up to be the person I remember being.

I won't let pain define me any longer. I'm sure I'll still be in pain and it will still suck, but I won't live there.

I wish you a pain-free life.

peace and love,

sunee

fibromyalgia

Fibromyalgia can often feel like it's taking the life right out of you.

Somedays it can be hard to just get dressed. On those days my self-esteem often suffers because I feel that I cannot accomplish anything.

I've already had to leave a teaching job I loved because the pain was so great that I couldn't function and I was pushing myself so hard I would collapse the second I walked in the door.

Even without working I cannot be all that I would like to be for my family. Pain, besides the obvious discomfort, is exhausting. And, for me, if the pain is severe, causes anxiety. Especially when deep pain strikes out of nowhere.

But those of us with this condition, and similar ones (like an autoimmune disease like I have as well) need to accept that it's okay to rest instead of doing the million things on our imaginary lists.

It's okay to take a warm bath or take a nap, or as I do, sit with my heating pads and read or play word games. Distractions are good. Meditation, a good book, a TV show or movie, or, if you're like me, any word game will do. In fact, I'm addicted to them and they have eased me through some terrible flare ups.

I'm learning to let go of the expectations I've placed on myself and care for my body (and spirit). I exercise as prescribed and do what I can each day. After all, tomorrow is another day. And, we may not be able to get to everything tomorrow. But the best we can do for ourselves is to find ways to cope with the pain so we can enjoy our families and our lives.

It's hard to completely change from a do everything for everyone every minute woman to an easy paced, do what I can one. What's even harder is not falling into a depression because we can't do what we'd like. We can't sit through a movie in a theatre. We can't always go meet friends. We may even lose friends because we're not as mobile as we used to be.

So I'm reinventing my daily life. I assess how I'm feeling and do only what I can do without causing more pain. I exercise 4-5 times a week. I nap. I read and I write and, of course, play word games. This simple lifestyle allows me to cook dinner for my family more often. It allows me to be better company. It doesn't take the constant pain away, but it makes life more enjoyable and it makes it easier to cope.

When we have chronic pain conditions we have to adjust our lives almost completely, but we don't need to give up having a life. So be good to yourself, take it slow and find some distractions to get you through the rough spots.
peace and love and good health to all,

sunee

creativity

Let's face it- most of us get uptight, wound up, stressed out. A fact of life, maybe, but one we should try to avoid.

We can meditate, practice some Yoga, listen to music and a million other things to calm us down and rejuvenate ourselves. But one way that helps me is to get creative. I write. Stories, plays, poems. I listen to music and let the mood carry me. It takes me out of my head for awhile and then I can deal with the problems that face me with a clear mind.

Whether life is on a bumpy path or maybe you have chronic pain like I do, we all need to stop the mind chatter, for at least a little while, and just be.

Creativity works well for me. Not that I don't enjoy Yoga or meditating. I do. A lot. But I need to express myself in an artistic fashion. Sometimes it's just coloring in a coloring book. Mostly I try to write everyday. Even a few lines of a story, some sketches or playing a song on the guitar can ground you.

So if you need to relieve some pain, be it emotional or physical, try something creative. Let it all out on paper, in a song, on a canvas.

We all deserve some clarity and self-expression from time to time. Or, like me, all the time.

peace and love,

sunee

every little things gonna be alright

I truly believe Bob Marley had it right- "Don't worry about a thing cause every little things gonna be alright." And even though we may panic, stress and project, in most cases things work out for the best.

I am prone to panic, anxiety and stress. I'm wound up most of the time. It isn't healthy or fun. So I'm working on using Bob Marley's words as my mantra.

Change, expectations, illness, bills, loss. We all go through these to a certain extent. We can chose to live in it, wallow in the "why me?" or accept what's up and move forward.

As I've said before, pity parties are no fun. I might add that panic attacks aren't either. Taking it one thing at time is the only way. One way I calm myself down is to triage the situation. I deal with the most predominant issue first. Having dealt with what's most pressing takes some of the stress off.

If we deal with one thing at a time- the things we can deal with or fix- each thing becomes a little less stressful and easier to grasp. We can't solve all our problems in one sitting.

I've put a lot of stress on myself in the past, due to my illness, worries about money, false assumptions of what others expect of me. None of this made my life easier. In fact it added to my pain.

So, I've decided that I am going to use Bob Marley's words as my mantra for now on. Listen To "Three Little Birds" and you'll understand why.

peace and love,

sunee

change

Change can open doors we feared never existed. However, change, in and of itself, can be scary.

Once again I am faced with change due to my illnesses, and, once again I remind myself that good things come from change.

Although I am tremendously sad that I can no longer teach due to excessive pain (and a load of other problems) I know that we can only do what we can do. Returning to the classroom was a wonderful experience and I adored my students and the faculty. It reminded me of what I am capable of.

The six months I was in the classroom was extremely rewarding and successful, but the Fibromyalgia and Sjogren's Syndrome made each day a challenge. I struggled to get through each day, but the love and care of my students and coworkers helped me to hang on as long as I did. It was an incredibly fortunate to be surrounded by people who cared about me.

I was stubbornly dragging my aching body to work everyday when a coworker brought to my attention what my family had been saying all along. I thought I was fooling everyone and that no one could tell how much I was suffering. But I was wrong.

Now that I'm no longer teaching I need to not only accept, but embrace, the change. That can be easier said than done, of course, but I'm easing into it. I plan to write, something I squeezed into my busy life before but now can dedicate myself to.

Change is inevitable. By bending and swaying with the changes we can open doors we never knew existed. That doesn't mean we forget where we came from, of course. That is what made us who we are today.

Stay fluid.

peace and love,

sunee