Wednesday, July 13, 2011

So, What's Next?

This question has been running through my head over and over again this past week or so, "What's next?" Of course none of us really know what comes next, but if I have all the ammunition in my arsenal, why does it feel like my life trigger has jammed? When I reflect on the events that are going on in my life now and in the past, it is hard to remember a time when Fibromyalgia wasn't in the equation. We become so numb to the consistency of this illness that unless we stop to think about it, FM/CFS has been sitting stagnant on our shoulders with us, watching our lives pass us by.

Obviously life will keep moving forward and for now FM will just have to be the hairy mole on my back I try so hard to hide until the time comes when we find a cure; however, over the past month or so it has been a real trial for me to motivate myself to work, play and live the way I was intended to. Albeit I have had some major family health issues effect my life but this stress was different, it effected me in a way I never expected. Even now I am not sure I can put an emotion to it, only that for the first time in a long time I felt the pieces of  my life not quite fit as they should. I could not cure the illness that struck my family, only cope with it. I was unable to concentrate on the things that give me pleasure, i.e. writing, my girls. One day would pass then the other and it was just time on the clock, lost to.....?

There probably isn't a single point I am trying to make here, but one thing I did learn, the answer to my question"What's next?" The next few moments, then more moments after that and for now, that is enough for me to take on and live to their fullest.

Wednesday, July 6, 2011

If You Don't Care Than Why Should I?

When my ten year old daughter said to me "If you don't care, than why should I", a string struck a cord reminding me of a vow I made all those years ago to provide and project the best character and  lifestyle I could for my children. Of course in this situation it was all about her hanging up her coat after coming indoors while in the same breathe I  shamefully draped mine over the banister. I had been been bamboozled by a ten year old and it felt as if my motherly mouth was slapping me in the face. She was right, why should she care if I don't.

I got me to thinking about how the quirky correction to my parenting, applied to the rest of my life and since Fibromyalgia and Chronic Fatigue Syndrome (MF/CFS) take up so much of my time, this would be a good place to start. We all have our daily routines, some days are good, some are bad and the rest are plain sh!t! Either way, we talk about this invisible illness and I just like you feel the frustration of FM/CFS not being recognized by the medical community as well as friends and family.

My question is, what have you done as a strong survivor of this painful illness to make change? Change is tough and we all deal with it differently, such as medication, vitamins, support groups etc. but what about the many other things in your life you could change to help improve your symptoms and include your family in the process? If we grow accustomed to being stagnant in this chronic path then you are undoubtedly feeling stuck, but there is a way out.

My theory, is that if you start to think outside of the box, such as looking up good recipes with my daughters (I have to cook anyway right?) that help FM and maybe try the Yoga on our Wii then maybe my family will not only come closer together but begin to care just as much as I do about fighting Fibromyalgia. I feel this plan would work just the same with family and friends. When they hear us griping about how much we hurt it is hard for them to relate, but if they see us making a difference no matter how small that may be their understanding of what we go through will be that much clearer. So when your co-workers ask about how yummy your left-over dinner, now microwaved lunch smells, you can say "It's great right, really helps with the aching joints from my fibro, would you like the recipe?"

All of this does not mean that ranting and raging on or offline, even to a very understanding friend is omitted or that there won't be days where the only thing you can muster to move is the pointer finger to adjust the buttons on the remote control. But on the good days, be sure to make your best effort to care in your cure and I guarantee everyone around you will care just as much.

Friday, July 1, 2011

What Does "FINE" really mean to someone with Fibromyalgia?

When someone asks how we are doing, we say "FINE", which in Fibromyalgia talk means: Frustrated, Irritated, Non-Functional & Everything hurts! I have discussed in the past how all of us have become such amazing actors/actresses when it comes to putting on our strong faces and accepting whatever emotion is reciprocated.

I feel pretty confident that we are all well aware of this situation so today I want to talk about what happens when a new trauma, stress or overwhelming event enters your life. "What do I do now", you ask? I barely have enough energy to take care of myself let alone taking on new responsibilities and unavoidable burdens.

Recently a close family member had a stroke and during the testing process also found out that he has testicular caner. Talk about a lot to take in, for him and me. Neither of us have a real "core" support system, family has all passed away with the exception of my mother who still lives on the West Coast so the reach for help is short.
My whole life was turned upside down in one second. I had to find a way to monitor my own health, mentally and physically but also find treatment and secure care for this new illness struct patient. Being listed as the person to make medical decisions on his behalf was a though pill to swallow for me, all that responsibility.

My life even now, 3 weeks after the major event I am far from the regular routine I was so accustomed to; however, it has given me the change to challenge myself in ways I think we all sort of push aside knowing what may happen to our bodies if we do. Weather it is going to beach with friends/family or riding your bike, taking a walk. We fall so easily into the caregiver position to take care of ourselves that we forget to open ourselves up to strangers or family members who may also need assistance. I admit that I can't do this full time, I have never hurt as much, been as tired and emotionally stretched thin than I have been these past few weeks, but I will continue to find ways to give back to others in my community who need help. I can do it when I feel good and for a short time in return I get the gift of my FM/CFS being off my mind and off of the hardest job I'll ever have, fighting fibromyalgia.

With some additional medication to help get through this temporary but exhausting event, I am confident that I will be back to my sassy, over zealous personality soon. Don't be afraid to ask for help if you find yourself in this sort of situation, talk to your Dr. and know your limits! Dishes can wait until morning, beds don't have to be made you are only going to get back into them. Take things one step at a time and find your way back to "FINE" will be the best gift you can give yourself.