In my more tired moments I often ask myself 'Are you winning?' and sometimes a loud resounding voice in my head says 'NO' and I have to pause, and I have to remind the voice of everything I have achieved that day and hold out until I hear that "Gawd dammit yes you are!"- Fortunately I am a stubborn soul when it comes to my Hypermobility Syndrome (Elhers Danlos type 3) and will always wait out for it because I deserve it. You deserve it too.
I love being out of house, I'm like a child on a school trip breaking all the rules by smiling at everyone I see. My soul feels like it is flying ahead of me and my heart skips a few beats. It doesn't matter if it's the school run or a food shop at the local butchers for Tony's dinner I love being out.
I am the kind of person that wants to tell people how great they are, to tell them they are winning even if they don't feel like it. They are winning because they are out too. I wish people would take every moment as a victory and derive great pleasure from the small things. Trust me, it's the small things that you miss the most when you're living with chronic disease.
When I was in hospital I was 'sprung out' on mothers day by Tony and Amelia-Rose to go and sit in the outside courtyard. It was a beautiful day and I was blown over to bump into a woman that I know whose husband had just suffered a stroke. When I saw her I can't tell you how poorly he looked. He was in a wheelchair with slightly vacant eyes and was obviously really having to think about his speech. Being a wheelchair user myself I know how awful it is when someone talks over your head to the person pushing you so I made a real point of being introduced to him and talking as much as we could.
Well, let me tell you! The other day I had just come from my weekly sound bath (one of the things I do to naturally control my pain) to have a coffee with my Dad. As we left the shop I saw the lady in question with a man STOOD next to her (with just a single walking aid) with an obvious bubble of personality around him and a glint in his eye. BLOODY HELL I thought "HE WON". I had to hold back my tears and almost over whelming desire to stand up and hug him. I could not believe the transformation between the man I had seen just a few months ago and the man that stood before me. I told him he had made my week and that I literally couldn't contain my excitement to see him. (Yes, I am aware he probably thinks I am a crazy lady)
His race was his stroke. My race is my Hypermobility syndrome. We all have a race though. Maybe your race is raising young children, maybe it's your job, maybe it's a dream you're chasing. Whatever it is I implore you to ask yourself every now and again ''Am I winning?'' Then go beyond the first voice you hear.
I pray for you that the first answer you hear is a 'yes'. Explore that though. Why are you winning? What's making you feel like you are winning? How can you keep that going? What can you do to protect it?
If it's a no don't be too disheartened. Explore that too. What's going wrong? Do you need to slow down, listen to your body more? Seek a friend's advice? Is this feeling of not winning real or is it your initial response to everything? I believe in everyone. I know that sounds so corny but I do. I believe in the power of people.
I am proud to announce a victory along the way in my own race. A week ago I decided to stop taking my break through pain killer (which is actually stronger then morphine so I'm told) that I take when I have an especially painful pop or dislocation.
I thought I was in for a week of pure hell but I'm doing ok. The pain is insane and was very out of control sunday night and whilst I'm struggling with this new huge pain I am winning. I decided I was going to stop and I stopped (as the pain killers had a purpose I was not addicted, you become addicted when your pain decreases and you don't decrease your pain medications appropriately)
I've had to work extremely hard at being mindful and have fallen out of all my nice habits of being with online communities which I miss terribly and I know I will pick up as soon as I can but I have been given some sleeping tablets to help me sleep at the minute. They won't work for long, they never do which is why I then have to go through months of insomnia. I try to naturally control my sleep but since my operation in May every 6 weeks or so I will have a few nights of taking the sleeping tablets simply because I just need sleep.
It is working though, I am off the break through pain killers. I won.
An update
I have been so active during the day that I've actually lost my editing time and have fallen a little behind with my youtube channel (which has now had over 7000 views) but I am so determined to pick it back up again. I want to have a positive impact on the world and the comments I get on the videos from fellow sufferers are amazing. It's working. People are reporting finding HOPE in my videos.
My body may be weary and I think there's a few people around here who are in their 80's and in better shape then me but Lord, there's so much more to come and whilst my body is weary my soul is so very alive!
I'm in touch with a young woman who every now and again I get an overwhelming desire to get in touch with and often find my fingers know what to type better then I do! I am so sure there are huge things due to come to her in her life but she's struck down with Elhers Danlos and shares many of the same symptoms as me (food intolerance etc). It turns out whenever I message her she's normally in great need of comfort, she recently told me that she actually screen shots what I write to her for the times when she feels very low. Messages like that are my driving force at the minute.
I know that this ministry is very much in the hands of God but I do feel like I have found my calling. It's going to take a lot of time and a lot of spoons (only some people will get that! If you don't type 'the spoon theory' into youtube) but I see this chronic disease movement ahead of us where we will grow bigger and bigger until as many people as possible know about this disease and other equally horrible diseases and those suffering don't have to go into long explanations about the what feels like a billion symptoms.
It's coming and we will win. EDS and HMS are not running this show anymore.
Fact
