How have you been? It’s easy to say I’m fine, I’m OK, I’m getting by. But the reality is much more sinister, the dark cloud of chronic illness lingers here, with me. It never goes away. I understand people mean well when they say get better, feel better. The foreshadowing of my future is an insidious one.
What have I been up to? Trying to raise awareness. Talking about the uncomfortable topics, reminding people of mortality. All the while trying to keep a smile on my face.
This week has been a whirlwind of the unappreciated complications of my diseases. Simply laying in bed immobilized in my neck brace I tear muscles in my neck. The tears severe enough that when I move my head it shoots pain down my neck and up into my jaw.
Sitting minding my own business my shoulder decides to jolt and dislocate out of place, without being touched, not even moving my arm. I relocate it wrong and tear muscles in my shoulder. Dislocate reset it, attempt to shrug off the pain. Intentionally dislocated to relocate it because now I relocated it on nerves and cut off the blood flow. All the while trying not to make any sounds of being in extensive pain.
As time progresses and dislocations become more frequent, multiple times a day every relocating a joint, the micro-tears the torn muscles, the destroyed nerves, just continue to get more and more damaged. Just because it pops out easier than a normal person does not mean the damage is not as severe.
As I have explained in one of my videos the dislocating over and over again is as though I am at overused rubber band. You use a rubber band over and over and over and eventually breaks. I am dislocating multiple times a day and have been for at least the last eight years my joints my nerves, my tendons, my muscles they are inevitably destroyed. So the pain worsens.
Living with something as treacherous and malicious as Ehlers Danlos, one begins to go through many stages to cope with the endless battles, increasing in severity.
Living with EDS takes strength, courage, determination, and hope to continue to move forward. EDS isn’t something one can fully describe to another being, unless they live with it. I am trying my best living with EDS to explain to those who don’t have it what it is like so they can better understand what it is like for someone living, breathing, surviving EDS.
Hopefully the following can help others to cope as well. There are important things I try to remind myself of daily, this helps me cope. These things are as follows.
1. Take each day as it comes. One breath at a time, take life’s challenges in stride. You do not do this alone. Ask for help. Talk about your battles. You can do this. You were strong. You are brave, beautiful soul. Your inner strength surpasses the strength of the physically strong. Continue to believe in you, you are a warrior of the invisible.
2. I remind myself how grateful I am for another breath of life. I have been blessed with the vision to witness random acts of kindness. I am blessed and grateful for all those whom have helped me and helped others, thank you to all those people for making a difference in this cold dark world.
3. Live life well you’ve got it, do the best with what you have. Never give up on you. Believe in yourself always.
4. I will always hold hope in my heart for all my fellow invisible illness Warriors I will never give up hope will live in me forever. Hopelessness cannot exist where there is hope. For where there is hope hopelessness cannot enter.
5. I remind myself that coming together with like-minded people always helps to ease my pain. The ache of the insidious pains invisible illness brings, helps us to unite together in chronic pain. Being united helps us find our invisible demons together we are strong. I always remind myself that for all we go through we are sure a strong bunch. Rare disease, chronic disease, and invisible disease we are united in our illness send in our fight. We are not alone in anything that we go through. Every challenge we face makes us stronger and makes us braver.
6. Many times in life things do not go as we have planned. Remember to continue to carry-on. Take life a day at a time. Live from one moment to the next. Always remember how far you have come, and remember to never give up on yourself.
Some people may ask me how do I deal with everything life has given me? And the answer is simply this. Living each day as it is today not thinking of tomorrow or yesterday. Living in the moment day to day to experience life for what it is. Whether the moment is a joyous, momentous, or horrendous one I know whatever moment it is it will pass.
I cannot change my diseases, I except them for what they are for what they have done to me and for what they will do to me. This does not mean I quit, I will continue to live life to the best of my ability.
I remain hopeful now and forever.