As most of you who know me, you will know that when I face a challenge if asked how I am, I shall always say “I building a bridge and getting over it”. Well to say that the last 2 weeks has felt like I was building a network of intricate bridges is a understatement. I have been in a particularly pissed off state of mind as it does certainly wear thin when you do everything possible to stay upbeat and focused and keep gettin more challenges.
When you live with a combination of complicated autoimmune diseases, life can become overwhelming with infections, inflammation, pain and a variety of illnesses. One of the most challenging things of all is the number of “miracle” cures and solutions I am offered on a daily basis by people who care. Other wise know as “Web Doctors”
While I completely understand that each and every person is simply desperate to help me and that they feel by googling and doing research on the internet that they may find this amazing solution for me. It does get tough as I promise you living with this challenge means that I look up and research EVERY possible option available.
I can also confirm that as someone who is fit, adventurous and outgoing, being sick or in pain constantly, irritates the shit out of me. I thought today I would share some facts about what this journey is like.
On a daily basis from minute to minute you have no idea what may pop up or create the challenge. What you are guaranteed of and what you can actually control is how you react to it and your attitude towards it. When I was first diagnosed I fought the bad days and got angry and surprise, surprise those days got worse.
Over the years however I have realised through the spiritual work I do and the coaching work I do that the best approach is simply to acknowledge it’s a tough day, give it the space it needs and my mood generally lifts quite quickly.
Living with chronic pain and these complicated diseases, is not for sissies believe me. I can promise you that no chronically ill person wants to be sick, they don’t love lying in bed for days when the pain is off the charts and it is not in their head.
It’s a very real unpleasant, frustrating reality. One of the most insensitive things you can say is “Are you sick again”! That for me is like a red rag to a bull. I am not sick again, I am simply navigating the very frustrating journey of Auto Immune Diseases I have. Which means at no time do I get a break. I just get to manage this myriad of crazy curveballs and try to keep a sense of humour.
I can also tell you that most of the time people who are in pain that is beyond what “normal” people can imagine, they will often still have a smile on their face and outwardly will look “fine”.
In my recent barrage of tests when asked if I could rate my pain level while I ran around a inside track with a catheter in my calf testing the pressure in my legs, all I could do was laugh and say “In comparison to what?”
When the doctor doing the test relayed that my tolerance to pain was extraordinary, I again just laughed and said welcome to my world. In this particular test the pressure of a “normal person” (another one of my favourite phrases). Would have a pressure level of 35, mine was 108.
I however could not say that I couldn’t push through this excruciating pain as that would’ve been a lie. I push through pain everyday it’s a choice. I choose not to let it own me. I learn to accept it as my teacher and it has helped me grow as an individual ten fold. It has allowed me to see the unbelievable blessings and support I have in my world.
In my last tests the results said I tested 98% for double calf surgery for chronic compartment syndrome. I then of course threw the doctor a curveball and said, sorry no surgeries for me. We need to find a really creative conservative plan to manage this issue. I am unable to have surgery due to the life threatening infections I get when they operate on me.
So now we embark on a rather interesting approach to relieving the pressure and doing things in a conservative way. I won’t stop my exercise as it keeps me sane, so now I have to just work out a way to do it. What I do have to accept is that the pressure and pain in my legs will be hectic for the first 45 minutes after exercise it will ease and I will get through it.
I am simply a person who needs a plan and a strategy and once I have processed what that it, I will stick to it.
So today as you start your day do me one favour and sit down and be grateful and thankful for each of the blessings in your life. And if you have big challenges going on, sit down and put a plan in place to manage them in bite size pieces. I know that as soon as I break them down into manageable pieces they always become less daunting.