Sannel Larson

Tuesday, February 12, 2013

Living with Fibromyalgia and Chronic Fatigue Syndrome "But You Don't Look Sick!"

If you read last Tuesday's blog post, you know that I began my very own, Fibromyalgia and Chronic Fatigue Syndrome awareness Day. Every Tuesday, I'll share with you my own ordeal with these illnesses, and also provide you with important facts about Fibromyalgia and Chronic Fatigue Syndrome. 
Hopefully, by sharing my everyday struggle, I may help someone in the same situation, not to feel so lonely. I hope, too, that non-sufferers of these debilitating and often "invisible" illnesses, will learn and understand better what it means to live with this, and how it affects our everyday lives. 




Tough pill to swallow
Last week, I mentioned that it took many years, before I finally was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. As soon as I was diagnosed, it helped me mentally, because I finally knew what was wrong with me, but it also brought me grieve. The thought of never feeling "good" for the rest of my life is a tough pill to swallow. 

I'm a person that hardly ever complains when I'm having a flue, or a headache, or any other aches or pains, so when the symptoms of chronic pain, aches and exhaustion started, I never let anyone knew about them. I figured, I had been working too much, or had been under too much stress, or it was the signs, that I was getting older. 

Even the tears that trickle down my cheek are painful. . .
However, the weeks and months past by, and so did the years. It was exhausting years, filled with frustrations and chronic pain. It did not matter how much I rested, I was constantly exhausted and in pain. Many times as I did a chore, I just fell to the floor and cried, and even the tears that trickled down my cheek was painful. However, I would never let anyone see me in this state of mind, or show in any way that I was suffering. Instead I put on a bright smile, and told everyone, I was fine. 




Surrounded by a thick, gray fog
In addition to the pain and fatigue, I developed symptoms of memory loss, hard time to concentrate, sensitivity to bright light and noise ( watching TV was not enjoyable anymore,) nervousness, anxieties and apathy. My surroundings appeared very diffused and muddled, like I was embedded in a thick, gray fog all the time. I had a hard time focusing when people spoke to me, and I had difficulties to find words when I spoke. 

People closest to me started to lose patience with my loss of time, memory and my disability to focus. My chronic pain woke me up constantly during the night, which left me exhausted in the morning. Any kind of stress and anxiety would make my symptoms even worse. I avoided more and more to socialize, and my ability to work and pursue any quality of life, became radically affected. 



The severity of Fibro-fog varies from day to day and from person to person.

Symptoms of Fibro-fog:


  • Inability to concentrate
  • Mental confusion and fatigue
  • Impaired thinking
  • Inability to recognize familiar surroundings
  • Inability to comprehend written or spoken words
  • Absentmindedness
  • Loss of short-term memory
  • Disorientation
  • Trouble with directions
  • Short attention span (seems like ADHD; sometimes speaking over others)
  • Acquired dyslexia (includes difficulty speaking known words)


Lack of knowledge
Except for the physical torment, there is also the emotional pain of misunderstanding and/or lack of knowledge from family and friends. Perhaps rejection from spouse or your loved one. In many cases there could be financial and social ruin, since the person with fibromyalgia often lose their jobs. The overwhelming feeling of pain and hopelessness, combined with feelings of failure, guilt and broken dreams can lead to social isolation, severe depression, and even suicide. 

BUT YOU DON’T LOOK SICK!
The one thing that makes fibromyalgia so hard to live with is the fact that you do not look sick. Fibromyalgia is also called the invisible disease, so even the people closest to you have a hard time to understand your situation. Usually, people who are suffering from fibromyalgia, try their best to give an appearance that nothing is wrong with them. They take extra care to look their best and when they meet people, they sound and look very cheerful, hiding the pain and exhaustion they really feel. 

However, all this takes very much of our energy, so we often try to avoid socializing all together. This behavior usually after some time becomes a quality of life, where you get more and more isolated from family, friends, and finally the world. 






More facts on Fibromyalgia and Chronic Fatigue Syndrome, as well as my own story, how it is to live with these illnesses, will appear on this blog next Tuesday. 




15 comments:

  1. Wow, I have heard about fibromyalgia, but I could not imagine it's affecting your life this much. It must be very hard to live with this disease. Is there any good medications that can help you to feel less pain or feel better?

    Kram, Madde

    ReplyDelete
    Replies
    1. The answer to that question is no!! Imagine one day everything changes, you are instantly feeling pain everywhere always, you fall often hitting the pavement face down because your brain does not tell you to put up your hands to try to deflect your fall. Your muscles are in a constant state of spasm,pain and your often confused and angry because you are constantly reminded of what your body will not allow you to do. sometimes its even hard to shower, I now need a bar to prevent me from falling and getting dressed also requires a lot of energy. Losing the support of family and friends is the hardest part, it is lonely once everyone goes away and they stop coming around because they don't understand why you don't look sick, but you are not able to even clean up your house , cook a meal (soup is a main staple), or even get dressed, people even accuse me of abusing drugs because I slur and walk into things its the pain of fibromyalgia and it sometimes hurts so much my neighbors have to call 911 for an ambulance to the hospital.Don't you think if there was a pill to ease the pain we would find it?

      Delete
  2. Hello (Sannel) and woff, woff {Sir Max}. I am both stymied and amazed. I have researched an posted much at pinterest of that research. However, this is awakening, since I know of you. Now our discussions have greater meaning. Even looking back at your photo with the mushrooms I feel a sense of the painfulness of kneeling for the picture. My hat is off and a nod of the head is offered. Respect is different more than greater having a better understanding . . .

    Mitch

    ReplyDelete
  3. Thanks for sharing, Sannel. This will surely help me to have more empathy with people suffering fibromyalgia and CFS :)

    ReplyDelete
  4. Made, so good to see you! How have you been?
    It's depends how severe your fibromyalgia is. In my case, since it's very severe, with constant pain 24/7 there are no pain killers (and believe me, the doctors have let me tried everything possible!) However, the anti-depressant, I take everyday, helps me to live and cope with the pain, but they do not diminish the pain. It's also very important that I get a good nights sleep, which is almost impossible, without any kind of medication since the pain wakes me up all the time. And of course, no stress of any kind or activity, because then my symptoms get worse. Thank you Made, for your visit and concern.
    Take care!
    Hugs/Kram,
    Sannel

    ReplyDelete
  5. Mitch, yes, if there is anyone who will understand, it's you. It's good to have you close by, and who encourage me in every way you can. Thank you!
    Hugs and Max sends his woff woff!

    ReplyDelete
  6. Martie, I hope by spreading my own story , it will help people to understand better, how these two illnesses affects our lives. Thank you for your time. It's always so good to see you, my friend.
    Hugs,
    Sannel

    ReplyDelete
  7. Sannel, you are doing such a great job of explaining this disease in terms non-sufferers can somewhat understand. We all have these symptoms; severe aches and pain, fatigue, depression but they eventually go away. You let us know what it is like 24 hours a day, 7 days a week without end. How they seem to accumulate and cause other problems like inability to concentrate, think clearly, recognize familiar things and much more. Thank you for sharing of yourself this way. You're doing an invaluable service educating the rest of us! Take care, my friend.

    ReplyDelete
  8. To write and to share is one of the most precious gifts in life.
    Here you help others through your own experiences Sannel; and this I applaud.
    I have been so meaning to do a little more work here on Blogger getting to know others as I do on HubPages and today I have caught up with so much writing and feel almost refreshed this evening.
    I shall most certainly follow you on here from now on ;I just need a little time to find my way around.
    Take care and have awonderful weekend. lots of love
    Eddy.

    ReplyDelete
  9. Rick, it's because of friends like you, I look forward to yet another day. Thank you for your constant support and kindness.

    ReplyDelete
  10. Eddy, so good to see you! I know what you mean. I'm still pretty new to Blogger, and it will take some time to learn the ropes. Thank you for your beautiful words. You if anyone have suffered more pain then I will ever do, and I admire your strength to help others through your experiences. Keep up the wonderful work you're doing. Thank you for your lovely visit.
    Sending blessings and hugs your way,
    Sannel

    ReplyDelete
  11. I really had no idea fibromyalgia could be so terrible, I hope doctors come with a solution soon :-(... I was visiting some of your other posts and they are very interesting, you've got a new follower :-)

    ReplyDelete
  12. Hi Ruth! Yes, I really hope they will find a solution in the near future. Thank you for reading my posts. It means a lot to me that you've taken the time to leave such kind words and also for being my newest follower. I will be visiting soon :-)
    Sannel

    ReplyDelete
  13. Hello Mary Kaye! I'm so sorry to hear you are a sufferer as well. My thoughts and prayers are with you.
    Thank you for your visit,
    Sannel

    ReplyDelete

Your lovely comments are my reward.
Thank you !