I spoke to someone today who has had Fibro be a part of her life for over 20 years. She was looking at my website, and came across the page that offers support for the people who surround us, help us, and are there for us. This apparantly made her very upset, and from my perception angry.
I welcome all opinions, everyone has one, and respect all opinions, don't always agree with them, but try to see where that person is coming from (not always successful, but try), and will listen and learn from others point of view.
I have come across a few people who have had the same point of view and want to now address it, as any discussion can bring awareness to Fibromyalgia, and maybe help you see things from a different point of view, whether you agree or not.
Those who are diagnosed with Fibro, go through pure hell. The pain, depression, change of lifestyle, feelings of no longer in control, on a daily basis brings out a person that we would not normally become. Some of the qualities are amazing, the strength you find within yourself, the new appreciation for simple events, but with good comes bad. The mood swings, snapping at people around us, finding it harder to be compassionate for those who are around us.
But are we the only ones Living With Fibro?
Our family members, spouses, and friends, also have a loss, a new life that they have to deal with. They no longer have a loved one who is social, smiling, outgoing, healthy, active, and the person who they have known. They now have to watch us become a shell of what we were (until we get better), can no longer hug us, deal with the mood swings, us snapping at them, and the most difficult watching us in pain and feeling helpless. Just like our lives have changed, so has theirs.
The person I spoke to today, had a few simple rebuttles, some understandable to me, and some not.
The people who surround us should just be happy that they are not the ones that were diagnosed with Fibro.
If we start putting attention on them, it will take attention off the people who are diagnosed. (will address this lower)
If they love us, they should be happy to help.
Let me address these first, as there is one more point, that I had a bit of trouble with, honestly.
Our supporters are probably very lucky to not be the one who wakes up daily with the pain, cant sleep because the pain, and cannot do because of the pain. However, they do wake up everyday with a loved one in pain, they do wake up everyday with a feeling of helplessness and have to watch someone they love go through this. How does it feel to watch your mother, father, husband, wife, child, best friend, go through something that affects them to the core and not be able to do anything to relieve it? How is it to take care of someone on a constant basis and feel like you have done so little, and your life is now focused on them, that you have given up a part of yourself? To have feelings, thoughts, and actions that you cannot express out of fear of hurting that person. Wouldn't a place to express yourself, discuss with people who are in the same position with you, and a place to just go ahhh, its okay to think and feel this way do a world of good not only for them, but for you. Please do not get me wrong, these wonderfully strong, caring, patient people who are around us do not regret helping, being there for us. For the most part, that is where they want to be, and the feelings they have do not negate their actions or the compassion and love where the actions come from. They just need a place to express and let the feelings go.
The last point I received was this;
Fibro was compared to Cancer, which I have done myself and have heard on many occassions. In this conversation, it was explained to me that Cancer is a very known disease, that is well funded, advocated for, and affects so many people and yet you do not see support groups for the families, friends, and spouses.
First I am going to strongly disagree with this statement. There are support groups for people who have lost someone to Cancer, or has someone who is fighting Cancer. I do not know where they all are, but I do know where my local one is and should you need one by you please contact me and I will research it for you.
Whether it is MS, Cancer, Diabetes, no matter what the syndrome, disease there should be a support group for everyone, especially for the Supporters. Why? The education, a place for them to learn, vent, express themselves, will bring nothing but benefits to both sides. A person who will understand what you are going through, a person who may be able to be more patient, and calm as their frustration, anger has been released elsewhere.
The last point, or opinion I have is this, any attention to Fibro whether it is for the person who was diagnosed, or the people around us, it is good attention. Any attention to Fibromyalgia will bring more research, funding to find a cause, and most importantly awareness and education for all those involved with Fibromyalgia.
Very simply, whether you were diagnosed, or supporting those diagnosed, we are all LIVING WITH FIBROMYALGIA.
My grandmother, my only grandmom that I had known my whole life. In fact, she was my step-grandmom, but she was my grandma. Two years ago, she was diagnosed with Cancer, for the fourth or fifth time in her life, and with four different types of Cancer. She had weeks to live. I had just gotten off the drugs, was in severe pain, had two young children but Grandma needed help, someone to watch her, help her with getting around as it progressed, especially the Brain Cancer. I drove 90 minutes at least twice a day to cook, be a companion, sleep through the night and eventually keep watch at the Hospice. Up through the night, reading to her, and I loved every minute of it. I definately did not get needed sleep, but I survived I worked through it, and I did it without thought. I went into survival mode.
Survival Mode happens to most. Something happens, like a death and you turn into a mode that will get things done, and just get through the time, you continue to do what you have to do.
What happens when Survival Mode becomes the new way of life?
When you are diagnosed with Fibromyalgia, you have already been in Survival Mode, and you are hoping until the Doctors are able to do something to help. If there is help.
Getting up, getting dressed, eating, moving, any action, thinking all becomes part of the survival mode. You slowly start to do just what you need to do to get through the day, what you need to do to just survive. Is this living? What happened to living, to laughing, experiencing, socializing, doing? We, you forget that it is suppossed to be more than just surviving.
My son, the most honest being I have ever met (he even tells on himself), came to me yesterday and said "mommy we actually do stuff now, when you are on the couch you are laughing at me (yes I do laugh at him), you dance, we can do stuff now, thank you" Even the little things, watching the stars, playing a board game, going to a movie theatre, is living.
When was the last time you started to live, did you something you loved, and not just survive?
Guilt...we have experienced it all our lives. Now that you are experience Chronic Pain, the guilt seems to be there constantly.
You are unable to do the thing you used to, you are unable to play as much with your children, attend all the functions you used to, hold all the events/holidays at your house, you do not visit family and friends as much, you are not able to go out with your partner, you are not able to be with your partner fully. GUILT GUILT GUILT....can you feel anymore?
Who makes you feel this guilt? Yourself, the people around you, or both? I will say this it is no one but yourself that can make you feel guilt. Everyone goes through a time in their life that they are not able to do what they used to, whether it is earlier or later in life. People may not understand what you are going through, but only you are allowing their comments to have the affect on you that they do.
Here is an example, years ago I started having Christmas dinner at my house, both sides would come my side and my childrens paternal side including their father and grandmother. Over the years the dishes started becoming less and less, instead of 10 there was 8, then 6....it was the preparation and clean up, and as the years went by the comments would come from the kids paternal grandfather. "Oh we got lazy this year", "You know a nice variety gives your guests more", "That lasagna you made the first year was really good". My mother was really good and explained she has to first do christmas morning, and then cook all day, and clean up after...she is tired and she needs to cut things down more. It used to make me feel guilty I could not live up to standards, and that I was not giving the guests everything they wanted. Then I thought about it, why should I feel guilty, if she wants to help so I can make more dishes, she could come earlier, she did bring her own food which was very nice and considerate of her, but if she wanted something specific she could make that instead and bring it, I need to take care of myself, I am still cooking a very big meal that everyone else seems to enjoy.
For christmas 2010, I was feeling no pain, but still didnt want to push my body, so I decided to cook more and use disposable cutlery and paper plates and my mom said she would take care of the other dishes. Great more food was more important to me than fancy cutlery and plateware. There were a few comments that just bounced right off me. The kicker was in 2011, the christmas I held again, and the kids paternal grandmother showed up with a gift, first time in 9 years she had showed up with a gift for me...can we guess what it was? A new set of cutlery. I simply thanked her, my mom and I had a good laugh, and we served the dinner on paper plates and cutlery.
I changed my perception of how I should be...and this did not allow me to feel guilt. Who you were before you had the pain is not who you are now. You will never be that person again. You need to find a new perception, one that includes what you are going through now. Those people who want to make the comments, who want to say you can do more, tell them where to go. Simply do what makes you happy, selfish no, you are happy, which means the people who are around you are seeing you happy instead of grumpy, cranky, short tempered, and they will be happy.
Other peoples perception is putting stress on yourself, the only perception that matters is yours. If you are happy with your perception, which should not include other peoples expectations of you, then you will see slowly how other people will be happy with it too.
A person offers you help, a new tactic that has worked for them, a specially designed program that may help you, but instead of thinking about it, instead of researching it, you have already said no. Why?
A walk down to the end of the street, NO. A massage, NO. A specially designed exercise program, NO. A special diet, NO. The Reason. I already eat healthy, I don't like people touching me, I am in too much pain.
What is the fear, what makes your answer NO, without first thinking about it.
I remember people throwing everything out at me, and trust me there are some quack doctors out there (one actually gave me a list which included putting a lawn chair in the shower so I no longer had to stand in the shower), however before you have had the time to think about it, to decide if it is a good decision for you or not, you have already made the decision.
The biggest reason, excuse, explanation that I get for the NO answer is that I am in pain, people just do not understand that I am in pain and can't do anything. The medications do not work, what you are currently does not work, but you do not want to try something that may work and ease the pain, because it can cause you pain. YOU ARE ALREADY IN PAIN. Worst thing that happens is that you try something, you are in pain still, maybe a little more pain, and you are to rest for the day. What happens if it works, what happens if you feel something good?
Lets not look at the negative the next time someone offers you a suggestion, next time look at it as it could possibly work.
I started reading a book this weekend, and a few things from it made me think. The book is "The Way Of The Herbs" authored by Michael Tierra, L.Ac., O.M.D.
Throughout my fight with Chronic Pain, more specifically diet, all but 2 doctors neglected to tell me the importance of balance. Obviously I was explained exercise, diet, and pacing, however that is not full balance. The body has been tended to, but what about the mind and the soul? Only 2 out of the many doctors I have had the pleasure of meeting brought the balance to my attention, and although the drugs, vitamins, herbs, dietary changes may offer some relief of the symptoms until the underlying cause of the disease is looked at, the actual disease will never be attended to.
I have a Doctor who helped me greatly to a pain free life. In one of my first meetings with him, he explained to me 2 eye awakening tidbits. First when Doctors are in medical school they are told that 50% of all they are taught will be useless, the question is who decides which information is usless? The second and the most important, to me, that Doctors are taught to treat the symptom not the cause. Now not all Doctors follow this practice, but far to many do, and many in the Chronic Pain area certainly do. If you have a headache you are given a prescription, if you are in pain you are given a prescription, if you are depressed prescription, when is the cause looked at?
Doctors, and the people who are living with the disease all need to take a look at what is happening mentally (past and present), spiritually, and physically not just the physical. Should you not address an event that happened, a death, abuse, a loss, but instead "sweep it under the carpet" it does affect the balance of our bodies. Very few will take notice unless something drastic comes into play, for many it is pain.
We need to heal ourselves on all aspects, and any type of assistance whether medical or natural, will not have the desired affect
Why a Life Coach, you have a doctor, if not multiple, you have your family and friends, a support system, why would you be in need of a Life Coach?
Very simple, not everyone is in need of one, not everyone benefits from working with a Life Coach, but some people do.
A doctor you go and see for medication renewals, check ups, to see if they can help medically with the pain, exhaustion, depletion of energy, depression, and so on. In most cases the doctor does very little to what you are expecting or hoping for.
A Life Coach, actually let me restate that, myself as a Life Coach (I cannot speak for other life coaches) is there to open yourself to new ideas, challenge your beliefs, step outside the box. Imagine having someone who has experienced some of the same symptoms, pain, and daily obstacles as you, and willing to listen without judgement, challenging your fears, but their only goal to help you reach the life you aspire to.
Instead of waiting in a room for a doctor to give you something to survive, I want to help you see you are what you need to live, and assist you in achieving it.
We all need a push, a reason to move ahead and keep fighting.
My daughter was reviewing my website, yes reviewing, and said that moms and dads needed a reason to get better. I wanted to pass it on.
I am happy that my mom is beter so I can play and Do more things with her.
She does not like talking about what she went through, or how she felt when I was unable to perform, but never stops making plans for me now.
Imagine your child, teenager, spouse, family member being so excited that you are able to go to the movies, go play soccer, get your nails done, just go for walk....that reason is an amazing reason to get up and walk, get up and say I do not accept the Doctor prognosis. The smile you see on their face will keep you going.
Pain can take on a life of its own. One that we do not expect, welcome, or want.
Every person has a fear of change, some welcome it, and others run. When you live in pain, it becomes the new comfort, the new safe zone. The possibility of living without is a change, and is scary. The possibility of living pain free, living a life you always dreamed, one not on the couch, not in pain, one without limitation.
Has the limitation become your excuse? If you are in pain you cannot reach for your dreams, and the possibility of failure is gone. You have a reason to not do things that would normally take you out of your comfort zone, you have a reason to not attend events that you do not want to, and the one that I used to love you have the reason to say no without having to say the real truth. The pain also becomes your new life, years of accommodating, years of changing, years of focus on the pain.
The pain becomes your easy way out, and after years your new comfortable. The pain also becomes a fear, what would you spend your days doing without?
Is the pain your new comfor? Are you afraid of what to do without the pain?