One Step at a Time

Being ADHD I have never been particularly good at doing one step at a time. I am not known for my patience. Walking this journey with my body as you can imagine can drive me mad at times as I just want to get out and about and on my board or up a mountain or in the ocean.

When the board of doctors, as I call them the “Ologists”, tell me ok you can exercise they always follow that statement up with BUT “slowly Mandy”. I of course have a good laugh as I can see that they are fully aware that I am going to rush out and “slowly” do a 10km paddle.

With this in mind and understanding the context of my personality and normal approach, I would like to give myself a pat on the back today. Today, tempted as I was to join my fellow Wahines for a lovely 10km paddle, I made a grown up decision to just take it easy.

I joined my mates at the vlei and watched them paddle off to train. I took 2 friends who have never paddled with me, and chose to help them get started on boards while getting my much need fix of being on the water. We did a 3km slow paddle with a gentle, very welcome rain on our bodies. Our paddle ended with us being greeted by a beautiful rainbow.

I realise that in order for me to not lose my mind completely with this challenge, I have to do things that make my soul smile. While my legs are sore my heart and soul are happy when I am on or in the water. So now I am learning how to work with this and how to help myself make it all possible to just keep moving.

So today as you begin your day and as you start to begin a sentence with I Can’t, stop yourself and remember you can do anything if you choose to, you just have to take the first step! One step at a time!

Building that Bridge

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.

Surrender and Acceptance.

Surrender and Acceptance. Two words that are becoming more and more frequent in my daily living and walking this rather challenging journey.

It’s important at times like this to acknowledge what it is you are experiencing and simply surrender to the process of changing the situation in the best way possible.

So today at the end of my day I choose to focus on looking at the things I am truly grateful for. I am blessed to have access to the best medical care and a panel of great specialists. I am blessed to have incredible support from my family and friends. And I am blessed to get up everyday and keep moving in whatever way I can. That some days is harder than other days but it’s just about showing up consciously day to day.

Today I endured a rather painful test and my result was not favourable. The inflammation and pain are off the charts and I am a bit pissed off and frustrated.

I however accept that I shall find a way to work with this challenge and create a plan that allows me to continue with the exercise and daily fitness regime that I embarked on to keep my body moving. I may need to adapt a few things here and there but I am as determined as ever to find a way to work with this.

So as I end my day I do so with surrender and acceptance. I choose to allow this to be what it is and to find a way to just move with it with grace.

Acknowledge your Emotions

Getting up and getting my head around my latest physical challenge has proven to be an internal battle. Having spent the last 12 months focused on keeping moving and getting the weight off I hit a wall when I got the news of possible chronic Compartment Syndrome in both my calves.

Let me tell you that when you are focused and doing everything in your power to beat the odds of living with constant pain and focusing on keeping your head in the right state of mind, it sometimes feels all consuming when you get hit with another challenge.

I must say that I don’t choose to let this current challenge get me down and I also won’t let it stop me from moving. What I have discovered over the last few years is that the journey within your own head is the one that is the most challenging. Self Sabotage is my biggest demon and I am my own worst enemy when I listen to it.

Many years ago however my Life coach said to me give this part of you a colour and imagine it as something. I see it as the colour red and as a Tasmanian devil. The visual imagery is a good one for me as it is significant to how it disrupts my life like a whirlwind of chaos. However what this imagery does for me is make me realise I can own the emotion and get in control of it by simple honouring it’s existence.

In this day and age the greatest challenge we face is dumbing down our feelings by being “fine” for everyone. When actually you are not fine you are pissed off and frustrated. I have found that when I allow myself to simple acknowledge that and allow the space for the emotion the heaviness of it generally lifts quickly as I have given my self permission to be pissed off.

I also started an exercise where I give myself a time limit. I acknowledge I am grumpy or frustrated and I tell myself I can have an hour, a day or a week whatever I decide and then I have to get up and do something that makes my soul smile. It’s amazing how well this works as I find myself getting out of the dark space a lot quicker.

This morning the day after my 6 weekly infusion (normally a tough day), I was blessed once again to start my day in the water. I was once again supported by some of my special friends and off we went to beautiful natural ocean pool to start our day. It is in these moments that I am reminded how utterly blessed I am and that nothing in life is unachievable.

My latest physical challenge is just that, a Challenge. Challenges by nature are things that can always be overcome if you have the right attitude and support. I have an abundance of both.

So once again as you start your day ask yourself what you can be grateful for and focus on that.