Today I found this documentary on Netflix called, “Unrest”. It shows the truth of what it is like being a sufferer with Chronic Fatigue Syndrome & also how it affects the lives of those living with someone with this.
Of course this all hits close to home. When every hour is unpredictable. Making plans and committing to things in the future produces anxiety. I get asked so what are your plans for the day?… Well, I have no clue. I have things I’d like to accomplish but that could change any minute. All it could take is trying to walk a bag of trash to the outdoor trash can for my body to start flaring and that puts me out of commission for a few hours. If doing something as small as that affects me instantly then how am I supposed to tackle fulfilling the basic duties that a mother & wife should be able to do?
This is all very discouraging and depressing to process. I get told all the time if you would exercise you would feel so much better. Of course it hurts when you try to do something active you have to push through it and it will get better. Well my attempt at that a few months ago led to having an Xray of my legs & feet, Bone Density Scan & Nuclear Bone Scan done to see what was causing my bone pain that would occur just upon simply taking a few steps. Then I’m told well your overweight so that’s why your bones hurt. They aren’t used to supporting the weight. Well it turns out my Nuclear Bone Scan found: “INCREASED ACTIVITY IN BOTH SHINS, ANKLES AND HIND FEET. FINDINGS SUGGEST STRESS RESPONSE/FRACTURES OR SHIN SPLINTS”
The question is why am I having a stress response or shin splints when I’m not physically exerting myself? My doctors said the typical, “I don’t know why this is happening to you.” So that leaves me stuck with bones that hurt that prevent me from accomplishing basic tasks and produce a fear of not knowing how bad this is going to progress. Am I facing the possibility of being wheelchair bound in my near future? If in the past year it’s progressed to this then what’s next? More doctor’s visits. More testing. Hopefully answers because Chronic Lyme Disease, Fibromyalgia, Hashimoto’s Thyroiditis, Degenerative Disk Disease, Major Neuro-Cognitive Disorder, Restless Legs, Sleep Apnea, High Cholesterol, Chronic GERD, Hiatal Hernia, Irregular Z-Line, IBS, Migraines, Venous Reflux Disease in my legs & Chronic Fatigue aren’t enough.
Now in less than 2 weeks I meet with my 2nd MS Specialist to determine if that is a new title that becomes part of me.
Back to the movie, if you haven’t seen it and you are trying to understand what it’s like for someone experiencing this then I recommend seeing it. We can all be better at loving one another if we can understand what they are going through and show true empathy.
#unrest #lymedisease #chronicfatiguesyndrome