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What people who suffer with Chronic Fatigue Syndrome and Fibromyalgia wish others knew

March 18, 2009

So many times since my diagnosis of CFS and FM, I have wished I could just say the things I wanted to when faced with the stares and sneers , critics, pushy people, unbelief, frustrated loved-ones, and even well meaning people.  There are also times I’m glad that I didn’t say some of the things I was thinking. I have tended to get somewhat frustrated when I pass some really energetic, athletic, beautiful, and happy female in Wal-Mart.  I get livid when they smirk at me with that snobby haha look at you then look at me look.  Ladies, you know the one.  (But, that’s another story.)  I have decided to make a list of some of the things I wish people understood about CFS and FM.  Perhaps, we should be honest with people about the way we feel or the way they make us feel; in an appropriate way of course.  What do you think?  So, here are some things I have come up with and faced in my life.

 

1.   We are not hypochondriacs, just depressed, or mentally ill.  We simply have a lot of symptoms and yes sometimes get down.  Who wouldn’t get down with an extended period of severe exhaustion and pain?

2.   We are not just being lazy.  If you don’t believe us, watch us when we are feeling even the slightest bit better.  We’re running around like there is no tomorrow trying to get all the stuff done that we couldn’t while we were incapacitated.  (This incidentally, often causes us to go right back into a flare so FM and CFS sufferers do things slowly and in moderation.)  We would love nothing more than to be back to our old active selves because we miss all the things we used to have fun doing.

3.   We are not trying to get attention.   Being identified as the “one who is always sick” gets old pretty quick.  Whenever we have to have others do tasks that we cannot do is actually quite a blow to our identity.   Oh, and getting stared at every time you venture out to run errands is always a treat too.   

4.   We are not over-exaggerating the pain and exhaustion.  We absolutely LOVE spending days on end in bed or on the couch and not being able to take 5 steps without wanting to cry.   Having 90 year olds blow past us like a NASCAR star and we are on a moped is a total blast too!

5.    One of the worst things to say to us is “just suck it up and deal with it” as if we are weak, just giving up, and not trying hard enough.  Like you could do any better than we do in the same situation and you actually know what we are going through.

6.   This one is for doctors.  Please do not dismiss our symptoms as stemming from “just being a wife and mom”.  Don’t just chalk it up to being depressed either.  The exhaustion and pain is much worse than what we had ever experienced before and we are coming to you because we really need help!

7.   We know we look “healthy” on the outside, but that doesn’t mean we do not have a chronic illness.  An egg may look perfectly edible on the outside but be totally rotten on the inside.

8.   We really do need the help from our families and friends at times just to get things done and please don’t be offended if we don’t take you up on a night out.  We are just too tired and in too much pain to do anything but crash on the couch or in the bed. 

9.   We already feel guilty and stressed enough.  No guilt trips are necessary.  We are not chronic whiners, we just need to get our feelings out.  Would you like it if someone made you feel guilty or like a big baby for having the flu? 

10.  Having to take medicine does not make us weak or drug addicts. 

11.  We are still the same people we were before we became ill.  It’s really hard to keep fighting to keep our identity when our whole lives are totally controlled by pain and exhaustion.  Remind us that we are still just as amazing, beautiful, valuable, needed, and wanted.

12.  One of the things we really need the most is a sympathetic ear, encouragement, a good laugh, a hug (without squeezing too hard), inspiration, your prayers, your understanding, and just your support in general.

While symptoms can vary from person to person, I believe that there are certain themes, concerns, and needs that run throughout the Fibromyalgia and Chronic Fatigue Syndrome community.   In fact, I would imagine that these points would ring true to anyone with a chronic pain and auto-immune disorders.  It helps to remember that there are others like you who are experiencing the same things that you are.  Reach out and find relief in connecting with others who really understand.  For those who have the support of family and friends, count your blessings.  For those who have no one or perhaps worse, live with loved-ones who criticize you, determine to find someone who will be there for you both online, and in the real world.  Chronic illness is much easier to bear when you know that you are not alone.  And if at times you feel the need to just tell someone what you are feeling, then just do it.  Learning to talk about FM and CFS is tremendously liberating, a lot healthier than trying to hold it all in and feeling too embarrassed or ashamed to for fear of being labeled.  Talking about these illnesses also brings more attention and understanding of them.   Approach “well people” in a considerate way and keep in mind that most people cannot fully understand what you are going through because they have never experienced it.  If someone would have told me that FM and CFS would be so debilitating prior to my onset and diagnosis, I wouldn’t have believed them.  Keep on fighting and celebrating even the smallest of victories.      

Things I will not surrender to Fibromyalgia and Chronic Fatigue Syndrome

March 16, 2009

     When you live with Fibromyalgia and Chronic Fatigue Syndrome every day there are so many things you find that you have to give up.  The activities and interests you once took for granted become a rarity at best and impossible at worst.  Even the basics of cooking and cleaning are at times too much to deal with.  There have been many times since I was diagnosed with FM that I have been in the dark pit of despair because of all the things I couldn’t do.  I have grieved for the Monica that once was and sat staring out the window at my husband working in the yard with tears streaming down my face.  Sometimes it feels like all my dreams will never come true.  Perhaps it’s true that I will not achieve all of my dreams, but there is no reason why I should give up.  Proverbs 13:12 says that “Hope deferred maketh the heart sick: but when the desire cometh it is a tree of life.  Note that it does not say IF the desire cometh, but when the desire cometh.  During the times when I have thought that my dreams, goals, and desires were impossible, it was too painful to bear.  I have literally been heart sick and it is my guess that anyone with FM has felt this way a time or two.  I have just recently been there because of having so much pain I couldn’t move.  This time I decided to think and focus on the things that I absolutely will not surrender to Fibromyalgia and Fatigue.  Here are some things, in no particular order, that I have decided to never surrender.

1.   I will not let FM diminish my faith or love for God.  I will not decide not to trust Him and seek His plan and purpose for my life.

2.   I will not lose my true identity to FM just because I am limited in what I can accomplish or be in one day.

3.   I will not allow Fibromyalgia to steal my zest for life, my mischievous nature, or my country girl ways.

4.  I will not become so self-absorbed because of the pain that I forget to reach out to others.

5.  I will not sit around and think that my situation is the worst situation to be in.  There are far worse things that happen to people in this world.

6.  I will not give up on my search to find the right combination of exercises that will help strengthen me instead of knocking me off my feet.

7.  I will not allow myself to stop feeling like a woman, beautiful, unique, valuable, and feminine. Does it really change anything if I sometimes move extremely slow, do not bother with makeup some days, and have done nothing but get a shower and lay on the couch all day? I will not stop being a wife to my husband for even a moment.

8.  I will not allow my illness to keep me from being involved in my sons’ lives even if I cannot be there for every single event.

9.  I will not give up on losing weight and getting healthier because doing so would at least bring some improvement. 

10.  I will not surrender my dream of building a log cabin on our farm and using it to help underprivileged or troubled youth.

11.  I will not give up my dream of having horses again and the ability to ride.

12.  I will not give up on my dream of traveling to Ireland, Scotland, & England even it means having to travel at a slower pace or alter our agenda for the day.

13.  I will not lose my sense of humor and wit even if sometimes I am the joke.

14.  I will not feel ashamed or self-conscious when in public because I move so slow and weird, people are staring, and 80 year olds are flying past me like they were an Amtrak and I was an old steam-engine.

15.  I will not give up on writing and getting published even when I can’t complete a sentence. 

16.  I will not be prevented from going back to college and getting my degree in education (English Lit) and minor in psychology.

17.  I will not stop working in my garden and enjoying my flowers.

18.  I will not surrender my vision of one day getting back to an athletic build and lifestyle.

19.  I will not stop hiking, playing in creeks and waterfalls, loving the outdoors.

20.  I will not feel guilt, shame, or worthless simply because some people in my life think I am just being lazy, over exaggerating my pain, being a hypochondriac, or just giving up when I am unable to do or be everything they think I should be able to do and be.

21.  I will not give up any of my goals, hopes and dreams or trying to accomplish them.

22.  I will not stop counting my blessings and being thankful for the people in my lives, all the gifts I’ve been given, and being given the choice and abilities to live life to the fullest and to make it better.

23.  I will not stop praying and believing for my healing, the healing of others, and a cure for Fibromyalgia and Chronic Fatigue Syndrome.

24.  In short, I will never give up hope because hope is what drives us forward even when we think we cannot possibly go on.

Fibromyalgia steals so much away from the person suffering from it that sometimes we focus too much on what we cannot do or be and not all the things we are still capable of.  I have days when I have been successful if I managed to get a shower that day.  Just two nights ago I lay in bed trying to explain to my husband the despair I was feeling when suddenly I blurted out “I just can’t give up on my dreams, it hurts too much.”  Tears just streamed down my face because I had finally got down to the bottom of what was making me so heart sick.  Jeremiah 29:11 states that God knows His thoughts toward us, plans to prosper us, not evil thoughts.  He has plans to give us hope and a future.  So many times this has been my creed and each time God has proved true to His word.  Not once has God ever failed in my life nor Has His Word ever proved untrue.  My hope and prayer is for you to take strength and comfort from this little exercise in coping.  Make your own list of what you will not surrender to Fibromyalgia and determine to never give up or lose hope.  Philippians 4:13 says “I can do ALL things through Christ which strengthens me”.  Determine to be a conqueror instead of letting Fibromyalgia conquer you.

Words cannot express

February 12, 2009

How can I explain all that God has been to me?  I’ve been saved since I was a young girl and not once has He ever failed me.  Even at my most unlovable, He has loved me unconditionally.  In my darkest moments, he was there beside me; holding me so close that I could hear His heart for me.  When I was broken, he gently took those shattered pieces and formed a beautiful, priceless, new vessel, nothing missing, nothing broken. When I sinned, he forgave me and delivered me. He alone knows the full extent of the pain, heartache, brokenness, darkness, depression, oppression, and abuse that I have suffered.  He alone could take someone so undeserving, in such a horrible and devastating situation (partly of her own doing) and transform it all into something so amazing and so beautiful. Only God could take something so empty and fill it to overflowing so it could be used to show others the hope, the love, the meaning, the peace, the joy, and restoration they are so desperately searching for.  If only I could show the world how wonderful and exciting life is as a child of God.  He has redeemed me and turned back the rejection, loneliness, sorrow, and hopelessness of a life filled with wrong choices, sin, and mistakes.  I know my redeemer lives.  He has kept every promise that He whispered into my heart during those times.  So much has come to pass just as He said it would.  So much is still to come.  He is my fortress, my strong tower, my rock, and my salvation.  These are not just words, they are irrevocable truths and I am so very thankful for all He is and has done.   

Putting a name to all of the pain and exhaustion

February 6, 2009

When I was first diagnosed with Fibromyalgia in the spring of 2007, I knew very little about it.  I only knew that the doctors had told me that the menagerie of  symptoms I had were pointing to FM.  The road to this diagnosis happened quite by accident.  I had went to my primary care physician because I had some sinus problems that were not going away.  After the exam, she sat down and looked at me and said that I looked like someone who had gotten no sleep in months or someone who was a very sick person.  I hadn’t bothered before to tell her about the pain, exhaustion, and inability to ever feel rested because all the other doctors before had chalked it up to the stress of motherhood, being a wife, and trying to work.  At that time, it was true that I had a very stressful life. I had two boys, a new husband, and an ex-husband that was determined to make our lives a living hell.  I was trying so hard to overcome the damage of 10 years of abuse as well.  I actually kept telling myself I was crazy and that nothing was wrong with me. In retrospect, I can see that the stress was in part, responsible for the severity of symptoms. When my doctor told me about how bad I looked, I just started to cry out of sheer relief. We then went over all my symptoms and history.  I went through a battery of tests for rheumatoid arthritis and lupus, just to name a few.  She then referred me to a very good rheumatologist group in the area, telling me that she strongly suspected Fibromyalgia.  The rheumatologist agreed, after more tests were taken to rule out other possibilities since my first test for lupus came out slightly positive. I had extreme pain all over my body; in fact out of 18 tender points, all 18 were very painful to the touch.  I had nerve pain all over as well and was unable to ever feel like I was rested even after sleeping 8-10 hrs.  It felt like my store of energy was minus infinity.  I was unable to walk from my living room to the kitchen most of the time.  I have always been an outdoorsy girl who had always loved dogs and horses, going on hikes, trying my hand at gardening, playing in creeks, etc… However, all of those things had been replaced with a struggle to get out of bed, trudge up the stairs to the main floor, and collapse for the day on the couch. If I had a shower by 3:00 P.M., it had been a good day.  Despite all of this, I walked out of the rheumatologist’s office feeling so relieved that the severe pain, debilitating fatigue, and mental fogginess that had been gripping me for so long, finally had a name.  I started to research and find information on this condition, naively believing that now my symptoms finally had a name and I would somehow be cured and beat it.  That was unfortunately, not the case.  I come from a long line of very strong women who believe that nothing should ever get you down, nothing can ever stop you from doing your work, and subconsciously, I think, believed that medicine is for wimps.

Since then, I have been on a rocky, twisting, and complicated see-saw of  changes, symptoms, and emotions.  There have been some drastic changes in me and my life while learning to live with this monster that tries to steal your days, your most precious moments, and your life.  Some of these changes have been positive and some not so positive, as my family would probably report if I would dare to let them have the keyboard. I have finally stopped being a coward, afraid to put myself out there, and write about my experiences with this condition.  My intent is to let other FM patients into the deepest parts of my life with FM. I want to write with complete honesty and candor, all of the feelings, thoughts, and needs inside that we are afraid to speak aloud.  No one who is suffering should ever have to be silent and suffer alone. I don’t want a pity party, I simply want to shine the light on the deep and sometimes dark fears, thoughts, and emotions that having Fibromyalgia has brought into my existence, my world. I know that I am not alone.   Tags: , , , , ,