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Voice of Reason

Eric is my reason and I am using my voice to stop the violence!

My Perspective

My Perspective

My New Normal

Posted on June 21, 2014 at 4:30 PM

Your normal day is my extraordinary day. Those with fibromyalgia develop a new normal. It is normal to have pain in every joint. It is an extraordinary day when that pain isn’t joined by fatigue, active IBS, skin irritation, dizziness, memory fog, or sensory overload. Things I use to take for granted like: bike riding, hiking, vacuuming, grocery shopping, or going to an evening meeting can now be a huge hurdle for me. Every day I have to work harder at being active, at being productive, and harder at being positive. If I want to go out in an evening my day has to consist of a nap somewhere along the line. 80% of the time I don’t just hop out of bed when my alarm rings, I need 15 – 20 minutes just for my feet to hit the floor.

 

I have always been quite a hyper person. It is like I was the energizer bunny on energy drinks. In the last year and a half that has all changed. I can no longer juggle many activities at once. I have to pick and choose what tasks and activities I take on. It has been a shock to me, my family, friends, and those that have always depended on me to lend a hand. When approached to take on tasks that I am just not healthy enough for at the time I always feel guilty saying no, but no is what I have to say; no I cannot manage a hockey team this year, no I cannot sit on 3 boards, no I cannot solely organize a fundraiser for a worthy cause, or volunteer to read with kids in need. These are all tasks that I enjoy but too many at once leaves me overwhelmed and I cannot physically or emotionally handle it.

 

I am not writing this for your sympathy or because I want attention or that I am victimized by this disease. I am writing this to educate. I did not understand the severity of fibromyalgia. It is one of the most painful and often debilitating disease with the least amount of knowledgeable data. For years even doctors treated it as a “depression” or a choice to be unhealthy. This disease is not in my head and it has given me no choice – I have to live with it.

 

Fibromyalgia is a chronic disease that amplifies pain by affecting the way your brain processes pain signals. It is characterized by widespread musculoskeletal pain and fatigue. It can also be accompanied by sleep disturbance, IBS, numbness and tingling in extremities, heightened sensory responses, joint stiffness, difficulty swallowing, bowel and bladder dysfunction, cognitive dysfunction, muscle dysfunction, and dermatological disorders. Basically anything that can go wrong has the possibility to go wrong.

 

I have to live with fibromyalgia for the rest of my life. This does not me I have to succumb to it or let it define me! I have the choice to live a life of happiness and productivity. I do however have to make substantial changes in how I face daily activities and extra-curricular obligations.

 

Living with fibromyalgia has given me a new perspective on life. It has made me prioritize what is truly important. My family is the most important aspect of my life and I am important to them, therefore decisions I make on where to invest my physical abilities are focussed around them. A simple example of this is; I just recently had to say no when asked to be part of a float for a parade. If I would have walked the parade route in the morning I would have had to have a substantial nap in the afternoon. As a family we had plans for the afternoon so I was not going to jeopardize my time with them. Another example is; instead of planting an abundant amount of annuals this year I have started putting in perennials. This will help in the amount of digging I will have to undertake in years to come. This will leave me with more energy to enjoy my yard and “putter” with my flowers in pots on my deck. Gardening is emotional therapy for me so I do not want it to become an unmanageable hurdle. I want it to stay a peaceful therapeutic release.

 

I have had to go to a medical pain clinic to start treatment for my fibromyalgia. At the clinic my doctor has instructed me that in order to live a positive productive life I must make sure all aspects of myself are being looked after. This includes my :

a. Physical Self

b. Emotional Self

c. Spiritual Self

d. Medical Self

Everyone needs physical activity. For me going for a walk at times can be like climbing Mount Everest. It is something I must do no matter what or I will only get worse. Healing restorative yoga has become a God send to me. With my tendency to be hyper, mindful stretching has not been something I have done until now. Yoga truly breathes relief into me. Eating healthy is a must. Some foods can even trigger a flare.

I absolutely have to minimize my stress and emotional upsets. As a highly sensitive person this can be very challenging. Those that know me well have the knowledge of the vast amount of adversity my family and I have had to endure through the past several years. I have my own personal issues, but I tend to take on other’s trials as well. I am a go to person for friends and family when they are in need of a shoulder of strength or in a crisis. I tend to borrow stress as well. When I watch the news I see the dismal state our world is in and I immediately think – What can I do? I truly believe and live by the mantra ~BE THE CHANGE YOU WANT TO SEE IN THE WORLD~ Ghandi. I just need to learn there are billions of other people on this planet that can also help.

 

Spiritually I am tight. I am a Bible thumping praise singing Christian. I know without a doubt in my being that God is in this with me. I had a medical doctor, who was a Christian, say to me, “Look at your pain as a lesson. Jesus took the pain of the cross for you. Now you may understand some of the pain he bore for you.” I thought that was profound. He’s right at least I do not have pain from floggings torture, denial, and being nailed to a cross.

 

My last step to healthy living with fibromyalgia is medical health. I have found this one to be a hurdle as well. I do not like to take medicine, especially pain medicine. I will do anything to avoid it. I’m not sure if subconsciously it makes me feel like a weakling or it is just because I have it in my head I don’t want to be a pill popper. Either way it took some convincing by my doctor for me to concede to using medicine. I know now that it was the right choice. If a person hurts constantly it wears them down. They can become cranky, lethargic, and pessimistic. These factors disrupt the first three points of health; physical, emotional, and spiritual. Taking my meds helps me to be successful in these three points.

 

If you or someone you love has fibromyalgia get proactive. Learn as much as you can about it. Fibromyalgia affects not just the patient but their family as well. It is not easy for a family to watch someone in pain. That person may drastically change how they do things. In my home my family has had to pick up the slack especially when I am in a flare. Family and friends need to learn patience and understanding. The fibromyalgia victim is not just being lazy or manifesting it in their head. They can’t just get over it.

 

For those of you living with the daily pain of fibromyalgia I encourage you to get physical, minimize your stress, pray, and find a great medical team to walk this journey with you. Fibromyalgia will never go away but how you choose to live with it will make all the difference!

 

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