Wednesday, April 30, 2014

THE FIBROMYALGIA SERIES PART L









We're already at....
L?


L - is for lousy. Today, I just feel lousy. I feel drained and devoid of energy. Someone just pulled the plug and it's an effort to take one more step. I even have a hard time typing this post.

L - is for lifeless. Along with feeling lousy and having no energy I'm reminded that right now I also feel lifeless. I need to get up and get moving but right now life is just passing me by. My biggest decision is moving my pillow.

L - is for left out. Everyone is going out. Where are you? Well, if you're feeling lousy, most likely you're on the couch or in bed. Not only do you feel like garbage but add guilt on top of it because you have decided to miss out and stay home.

L - is for log. Because that is just what you feel like. A lousy, lifeless log.

L - is for labeled. We don't like it but it happens. We can be labeled by our doctors as a malingerer or depressed. We can be labeled by our friends and family. I can only hope that one doesn't happen. In the perfect world we should have all the loving support that we need but this world isn't perfect. If you are being labeled by friends and/or family, find a support group that can help you.

L - is for lazy. Which we are NOT. I'd venture a guess that most of us were a true Type A personality that went after everything like our hair was on fire. 

L - is for lament. Because of the above we still miss our old lives. Even though that struggle lessens with time, it is still there. I loved sales. The activity and the high pressure.....I thought I could thrive in that lifestyle.....and I did. Well, I did until my body decided to stage a revolution.

L - is for lucky. Why do I use the word lucky? Because we are. Fibromyalgia might be life changing but, thank goodness, it isn't life threatening. I know people that have cancer and have the stress and fear of chemotherapy. With every treatment they hope and pray that they will be one of the lucky ones that beat it. We should be thankful that what we have isn't as bad as that. I'm not trying to minimize this......at all. It is painful and that pain and fatigue and the 1000 gillion other symptoms that plague us can feel like we can't take one more second. What I am saying is that we need to have an attitude of gratitude because it could be so much worse.

L - is for laughter. Because it truly is the best medicine. Find something to laugh about every single day. 

L - is for light hearted. Along with laughter it will lift your spirits and help you deal with chronic illness.

L - is for leisurely. If your body will allow....take a leisurely walk outdoors and drink in the fresh air and sunshine. If it is raining and the humidity is causing pain off the charts.....make that walk a virtual one!! Remember.....the world is available.....all at the click of a mouse.

L - is for luxurious.

When all else fails......

When the world seems not to understand.....

When it just seems to be too much.....

there is nothing like a luxurious bubble bath.

(if you, by any chance, have a jetted tub.....do not.......

let me repeat once more.......

DO NOT........

use bubble bath with a jetted tub.

just sayin................





Friday, April 18, 2014

THE FIBROMYALGIA SERIES PART A









As we keep saying, 
until we are blue in the face.......


A - is for this is not all in our head! Even though research has proven it and medical journals have validated us there are still physicians who think this is all in our heads. It's demeaning and infuriating and it causes torment to those who have to go from doctor to doctor to find one that will believe that we're hurting and there is a reason.

A - is for the anguish this causes and......

A - is for the arrogance of some doctors and you'd like to slap them silly for callously dismissing the symptoms we have all because they can't find the time to help you with management.

A - is for advocate. There is no if, and, or but about it. We must be our own advocate. We need to arm ourselves with as much knowledge as we can. We need to watch what is prescribed and learn about our condition and how to manage it.  If we don't, no one will. The medical community is full of naysayers and doctors that haven't got the time for us. 

A - is for assertive. Yes, we need to have a voice and use it for what we need and expect from those who treat us. We should never walk out of an office in tears. We should never be confused by instructions or treatments that don't make any sense. When we find our voice we also find our confidence. Never be afraid to stand up for what you believe.

A - is for advice. Everyone has advice and you'll get a ton of it. People can be well meaning but this isn't just tired. This isn't just, "well I have aches and pains too." Everyone has someone who has someone who knows someone who has Fibromyalgia. Again, I'm sure they are well intentioned but there is advice galore out there. If you just take more magnesium it will help you.........sometimes it's just better to smile and say thank you.

A - is for appallingThere are sites that are full of the latest "cure." For $49.95 there is a supplement that will be the answer to all your prayers. These sites prey on our pain, fatigue and desire to find anything that can help us resume our life. There are snake oil salesman disguised as physicians that will promise to cure you if you just sign up for their protocol. There are people that will take advantage of the misery of others. Do a lot of research before you succumb to herbal remedies, vitamin or IV protocols or anything that promises you a cure. Some can be dangerous, let alone extremely expensive. Be careful.

A - is for agony.  Chronic illness takes a toll on your life. There is the physical agony and then there is the emotional agony. I don't know which one is worse. 

A - is for acknowledge. I have to acknowledge that this is "what it is." Why I still struggle with denial is beyond me. I think it's those days that I feel like I can leap tall buildings in a single bound. 

A - is for anxiety. Every single time, I mean every single time a new symptom pops up....

which brings me to.........

alarmed...............

and..........

waiting again for..........

something that will.........

alleviate all of this...........

( and this one is shorter because there is another A in Fibromyalgia!!)





Tuesday, April 8, 2014

THE FIBROMYALGIA SERIES PART Y








We still wish we had our old lives back.
I don't think that ever leaves us.
But we can still have a meaningful one.



Y - is for yearning. Yes, I still struggle with the loss of my career. I loved new home sales, however,  I struggle with it less than I did a year ago. I think we all have that but reality sometimes dictates otherwise. 

Y - is for yawning. I do that a lot. Fatigue is one of the twins (what I like to call pain and fatigue) that plague my life. Like a lot of people with Fibromyalgia, I also have Chronic Fatigue and Autoimmune Hashimoto's Thyroiditis. Between all of these ailments I have trouble knowing what to attribute to what. No matter what......I still don't get refreshing sleep and I'm always very tired.

Y - is for yourself.  We must take care of ourselves. Sometimes we feel guilty that we can't do things we may have planned or things that need to be done. We need to listen to our bodies and be good to ourselves. Mentally, physically and spiritually. 

Y - is for yoga. Stretching is good for our body. We need to keep the muscles moving even though it may hurt. Exercise is one of the things that we must do. Yoga, Tai Chi is two ways that we can be good to our bodies and keep it in shape.

Y - is for yield. Sometimes we have to bow to the inevitable. One of the hardest things I had to learn is, "if you push you will pay." I still have trouble remembering that but it is important to yield to your bodies demands. It's tempting to do too much when a good day comes around but it is important not to do too much. (although sometimes it is worth it!!!)

Y - is for yell. There are times we just have to. Fibromyalgia can really piss us off. I say that built up stress isn't good for you so.........when everyone leaves the house......close the door and release all that pent up frustration. I yell at Fibromyalgia a lot. It helps because I don't end up yelling at everyone else!

Y - is for yucky. I hate those days. The twins have taken up residence and all I want to do is curl up in bed cause I feel just yucky, yucky, yucky.

Y - is for yellow. The sun is a beautiful yellow so when the weather allows, go outside and soak up that glorious sunshine. It helps your mood and gives us Vitamin D. Take  a short walk and feel the warmth on your skin.

Y - is for young-at-heart. It doesn't matter how old our body feels and that we creak like a 100 year old person. It's OK because we can still think young. Learn a new skill and keep your brain active. Read, learn technology.....it keeps you young.

Y - is for yummy. .........

Personally?

I like ice cream......

Some is good.....

more is better.....

and too much?

Is just enough.......





Tuesday, April 1, 2014

THE FIBROMYALGIA SERIES PART M









We're already to the letter "M."
Where would we be 
without the pain in our body?
Which leads me to .....


M - is for our muscles. That lovely old fibrous tissue that gives us chronic, widespread, musculoskelatal pain which is our namesake.

M - is for moron. I feel like one when the fog sets in and I can feel my IQ drop by 60 points. It's very disconcerting to not be able to remember things. It really is embarrassing when you stop mid-sentence because you can't remember the next thing you were going to say.

M - is for motionless. There are those days when the pain is so intense that I just want to shut out the lights and lie motionless until it passes. 

M - for melancholy. Because the pain and fatigue are our constant companions it's tough to remain upbeat. This is a constant struggle because I just don't want to remain in that state. I will say.....it's work.

M - is for management. We must be ever mindful to manage our symptoms and not let them run away from us. We live with our doctors on speed dial and scour google for ideas and articles about the latest thing just in case it can help. I think most of us can run down numerous management tools that work and those that are junk.

M - is for mysterious. Odd symptoms appear and disappear at will. I have no idea what they can be attributed to and I end up throwing all of them into my Fibromyalgia wastebasket.

M - is for massage. At times, massage seems to help. When my muscles are in real bad shape the thought of anyone "kneading" those muscles is terrifying. I'd be screaming through the treatment and I don't think I'd help their business. 

M - is for memory. Memory? What is that???

M - is for money. Fibromyalgia isn't cheap. Even with insurance the co-pays can be ridiculous. It seems that the month starts and ends with doctor appointments and trips to Sam's Club for my prescriptions.

M - is for mellow. Believe it or not, I've mellowed in my old age. Now, there are those in my family that would hotly debate that statement but I believe it to be true! Not getting on my soapbox about everything has helped. Stress is a killer and it just isn't worth it. I'm not going to change the world. I need to just take a chill pill.

M - is for merciful. Even on the days that are terrible I go back to my mantra, "it could be worse." It could be a lot worse and I don't even want to think about it. People are dying and have cancer.....I'm grateful that what I have can be managed and isn't life threatening. It is life changing but I can deal with that. I am thankful that God has been merciful and I thank him every day that my family and friends are happy and healthy. Me? I'll get through this.

M - is for meaningful. Even when things are tough, we need to find something that makes our life meaningful. For me, it's this blog. For you it may be looking up in the sky and seeing a beautiful sunset or the soft breath of a dog sleeping next to you. What ever you find that is meaningful.....revel in it. 

Even though life is tough,

Even though life sometimes isn't fair,

Even though we think the pain will never end,

Even when we think we can't take much more,

just remember,

it truly is better than the alternative.