So today as you start your day think about what will make your soul smile and do that. Think about who you care about and let them know. Be kind to yourself and people around you, kindness doesn’t cost you a thing but it could make the biggest difference in someone’s life without you even knowing it.
One of the greatest lessons I am learning at the moment is to be able to truly understand what my capacity as a person is right now in the current place my body is at. For the last 9 years since I was diagnosed I have been trying so hard to do what I believed was best serving my body. I have gotten up and shown up every day as I truly do want to be well and “normal” again. I have worked with exercise, nutrition and cognitive behavioural therapy. I have well and truly gone to places I never thought a person could go and I have dug deep on many days to just keep the focus.
The one key thing that I have not always done though is just know my limits in the now. I have been on some level of complete denial that when my body has been screaming at me to stop and rest that I just need to focus and push through. While it is true that focus, determination and true belief can get you through most if not all things, sometimes what you really need is to just stop and rest.
Our bodies are the most amazing things and all the stuff that operates in our bodies ultimately comes from the brain. It is the message centre that sends off all the messages down the spinal cord and ultimately alerts us to where the pain of problem is.
When these message centres are interrupted or not “firing” like they should normally be it can be a complete shit storm in your body. I know this storm I live it every day of my life and I am doing all I can to get it back on track. The one area I have been most challenged in is communicating when I have been in too much pain to really push myself in a healthy nurturing way.
The way we communicate with ourselves and nurture ourselves is so important in daily living as at the end of the day only you as an individual can be the protector of your own body and wellbeing. The current pace of life and constant expectation of the world as a whole to be connected, available and responsive 24/7 has meant more more people are pushing their bodies beyond what is naturally, healthy and nurturing for our bodies and overall wellness.
Setting boundaries and understanding your limits is essential to life. I have personally struggled with this for years. I am a complete empath and if someone or something is in need I automatically want to help and solve, save or rescue the person, animal or situation. The reality is I will always be that type of person BUT the most important thing to remember if this is you is to check in with YOU first. Ask yourself can I give this my energy and do I have the capacity to help without putting myself at risk.
Boundaries are healthy and completely necessary for daily survival. Boundaries are about self love, selflessness and being the best version of who you can be. I have done a lot of work on learning how to be kinder to myself and aware of my personal needs over the last 12 years but have still pushed myself beyond my limits many times due to unrealistic expectations of myself.
The key here is that no one and no situation is responsible for this except me. No one can MAKE us feel anything or do anything in life as we ALWAYS have a choice. That is how we were made. As human beings one of the greatest gifts we have been blessed with is Choice and the right to choose.
I know there are many situations in real life where we feel we don’t have choice and there are many stressful situations globally right now where people’s right to choose has been taken away or controlled by outside people and things. In these situations however we do still have a choice as small as it sounds and as irrelevant as it may seem to some of you we always have the choice on how we react or respond to the situation.
Yes there are many stressful influencing factors in our daily lives, far too many in comparison for how we as human beings were created to be. There is too much noise, too much “plugging in” too much clutter and too many expectations from outside factors on what we BELIEVE is needed or required from us in order to validate our existence on some level.
Over the last 5 weeks my body has faced so much trauma, so much pain and so much discomfort that I have had to simply STOP on all levels and just listen. I have had to face my mortality head on and truly get perspective of what is real and what is necessary in life for my own survival and it is really very simple.
It all just boils down to knowing your limits. It’s about putting stress and pressure into perspective and managing how you respond to outside demands and the “urgent” needs of others with clarity and perspective.
The language we use daily has a massive impact on us too as we take on pressure or create additional pressure when we think that if we don’t do something or respond to someone’s demands that it’s in some way going to be the end of the world. The reality is nothing is the end of the world and no meeting, client, expectation or demand is the end of the world or worth putting you and your health at risk for.
The reality is living in these current frenetic times requires time to stop, breathe and consider what will best serve you as an individual. It requires you to think of how you can best resolve the problem, how you can best spread the load in order to get the solution needed. Without judgment, without drama and without buying into chaos.
So as you start your day today take time to plan it and put into place realistic goals on what is possible for you to achieve. Take time to remember you have the choice on how you respond to pressure and you have the right to set boundaries for your own well being.
Nothing is the end of the world and nothing is so important that it is worth your personal well being. Everything has a solution sometimes you just need to ask for help or spread the load. It really really is that simple.
I truly believe in life we all have a Tribe that help us learn, grow and believe in what’s possible. This Tribe comes in many forms they are family, friends, colleagues, doctors and even sometimes foes. They are the people who are your teachers and are there to remind us that every second and every moment in life is to be revered and appreciated and never taken for granted.
I am so utterly blessed to have such an amazing Tribe of people in my life who have helped me to just keep my mind focused and remember that every second of every day is a blessing. I have learnt an immeasurable amount over the last 46 years of my life and an so thankful for the teachers that have come in so many forms.
The last month has been my toughest month living with this combination of auto-immune diseases and it has taken me to some of the darkest, scariest places I have ever been. I have experienced trauma to my body that has literally had my nerve endings shaking uncontrollably. When something like this happens however it brings such clarity and awareness to what is real and what you will and won’t spend your valuable energy on And that all you can really do is be utterly grateful for the teaching.
I am a Warrior and people know me that way. I am the person who will always stand up and face what comes at me. I have had the honor of walking the Beautiful Red Road for the last 12 years and have learnt so much from these ancient Native American Teachings on what is truly important and how to connect deeply with what is being taught to you.
I have taken part in something called the Dance to Heal the Earth for 4 years now and in my first year I was given a Native American Name and it is Standing Tree Heart. My roots reach deep into the ground and my branches reach high into the universe connecting me to all that is and all that is possible. I was created to be the change I want to see in world, we all were actually but we all just connect with this in different ways.
I am a person who believes that you have the right to connect with life in whatever way works best for you and in some people that is through a chosen religion and some people it’s no religion or belief in religion and all of it is ok and exactly as it should be.
I do not push my beliefs or way of connecting onto anyone as that is not my right or responsibility. I do not judge anyone for what they choose or don’t choose to believe as again that’s not my business or right. But I do have an incredible connection with God and the higher power I call Great Spirit and I am utterly grateful for this relationship as it just gives me a sense of true love and understanding.
I love my Tribe of diverse special people that fill my heart with joy and bring so much to my world. I have an amazing Tribe that help me remember every day that there is SO much life to live and be appreciative for. I have a Tribe made up of eclectic personalities, religious preferences, sexual preferences and races and I LOVE that I have that, it is such a blessing.
Today I woke up in my own bed for the first time in 3 weeks feeling like I can REALLY do this. I can get back up and moving and heal and that it may have to be at a slower pace than I normally like to move but I can do it and it is because I have the most amazing Tribe who have my back. I accepted that my body has taken a hammering and I need to be gentle and patient and just do what I can when I can and that’s ok.
It’s called loving yourself enough to listen to what you need. It’s so important to remember that NOTHING is the end of the world or so important that you need to put yourself in harms way. That trying to keep everyone happy at your own expense is going only damage you and only you will pay the price. So stop worrying about what people think of you, stop worrying about other people’s perceptions of what they need you to be. And start focusing on how you can best be of service to the world in an authentic way from a place of love.
Today as you start your day, be honest and check in with yourself and see if you are doing what you choose to do to have an impact on the world authentically. Check in and give yourself permission to slow down or speed up if it is what you ultimately need. You see the only way we really are going to Heal this earth and this planet is to do the work internally first. The only way we are going to be the change we seek in the world is to literally and physically BE that change. It is all possible and totally achievable as long as we BELIEVE it is.
Today I start my morning with another one of Don Miguel Ruiz Four Agreements as inspiration.
Don’t make assumptions – “Find the courage to ask questions and to express what you really want. Communicate with others as clearly as you can to avoid misunderstandings, sadness and drama. With just this one agreement, you can completely transform your life.”
Walking my journey with chronic pain and illness has taught me a lot about this particular agreement and the danger of buying into the full blown drama of making an assumption about anyone or anything.
You see my greatest bug bear on my path has has been my relationship with my body and how I come to terms with the weight fluctuations due to the medications and imbalances that are part and parcel of what I am challenged with with my disease and drug protocols.
In the “real world” however people mostly live their lives based on what they assume or perceive to be the truth without understanding or taking the time to get to know you. You are judged on how you look, what you earn and how you fit into their little box of perception. The foundation based of pure assumption unless they take the time to ask you who you are and what makes you tick. Which I am sad to say is not often the case.
One of the most challenges issues for me walking with this myriad of diseases and living in a world filled with judgement and preconceived ideas of acceptance and perfection has been learning to just love and appreciate my body for what it is in the now. I have wasted too many hours , too many tears and too much valuable energy on what people think of me and assume about my weight and my body.
I am a powerful, beautiful, intelligent women walking a journey that requires my full energy and focus on getting better. What people think of me has nothing to do with me. Any assumption by anyone not living my reality and judgement thereon is literally their movie and their “Stuff”.
Part of my challenge with my illness is that often due to lung infections and other complications I have to take large doses of cortisone and I blow up and pick up weight which frustrates the hell out of me. What I have realised in this latest 3 week journey in hospital is that I simply choose to surrender to the process and do the best I can under the current circumstances. I have had time to accept that I no longer choose to associate or be around people who make judgements or assumptions about who I am based on what I look like or how I conveniently fit into their world.
Don’t get me wrong I am very blessed to be surrounded by many wonderful, genuine people who get me and take time and care to understand my journey. I also have friends who don’t get the reality or complexity of my journey as it is just too much to understand but it doesn’t make them love or care for me any less. So in essence my biggest challenge is with acceptance of the “is-ness” of whatever space I am in in that moment is me and how I choose to work with it in that moment.
I choose to accept that I have a few rather challenging results that are complicated and frustrating and need to be balanced with all my focus and care if u am able to survive and thrive through this.
I choose my well being as the priority and to honour my needs in the present moment one day at a time. I choose to be body positive and just love every curve, every bump and ever part of the body I have in the now as I am Alive and that after the last 3 weeks is the real miracle.
I ask you today as you start your day to take a second and think before you make and assumption about anyone and the journey they may be walking. Just take the time to be kind or smile at someone or smile at yourself and just love yourself as you are as that really is all that matters.
To quote Don Miguel Ruiz
“Always Do Your Best – Your best is going to change from moment to moment; it will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best, and you will avoid self-judgement, self-abuse, and regret.” This is one of my favourite of the Four Agreements by Don Miguel Ruiz.
Today I found myself in a space where I literally felt like a dark toxic cloud had descended on my head. Like I was in a straight jacket and I wanted to run down the passage screaming ENOUGH!!! And in the same breathe I heard myself saying suck it up buttercup this is NOT the end of the world.
I decided to prepare each element of my night before to put myself in the best position to be in the least amount of discomfort as possible. Being the OCD control freak I am I need to at least BELIEVE I am in control of some of what is going on.
Truth be told over the last 18 days there has been very little that I have been able control. It’s all been a bit of an emotional roller coaster and to be honest when I woke up feeling like my lungs were exploding and my entire body was on fire at 3:45am this morning I had what only I can term as a Asshole Collapse.
I was kind of like a petulant child, pissed off, tired and wanting to go home I just wanted out of these quickly becoming claustrophobic four walls. I had, had a reasonably good night sleep to be fair as had managed to sleep for 2 hour intervals but at 3:45 I was awake and sore and irritable.
So here I am moaning about 18 days of this. I mean really who do I think I am? There are people who spend a lot more time in a lot worse conditions and they don’t act like spoilt brats. They just get on with it and do it. But you know what for me right now this was my low point. It was my moment when I was like “REALLY ” and to be truly authentic to my process and the goal I have of healing physically, I really do need to just allow myself to feel these emotions not matter how rational or irrational they are.
Once I had seen my Doctor and he told me that I was still not heading home I decided I needed to pull my head out of the woe is me mode and find something, anything to focus on to make my soul smile. I had a harsh talking to myself and deduced that I was going to get my mind onto anything other than where I was and what I was experiencing.
I got up and walked to the garden outside and just sat and looked at the beautiful flowers and trees. I breathed in some of the fresh outdoor air and let the sun warm my face. I focused on smiling while I did this to just shift my mood. It does help to smile when you trying to shift your mood. I don’t know why and even if you start off faking it by the time you have done it for a few minutes You genuinely do feel a better.
I was blessed to visited by my sisters and some really special friends who just knew I was struggling today and they made me laugh and gave me a bit of a kick up the butt. I called my massage therapist and got her to come and just give my very sore body some tlc and I spoke to my mom. And finally to end my day I got to see my favourite Nurse who is kind and makes me laugh. So tonight I am going to bed with a better attitude and grateful heart. Each of these things helped me to do the best I could today which in the end was all that mattered.
There are a few words and phrases in my vocabulary that I find challenging in real terms. However Rest and Recovery seem to be hard words for me to contextually put into perspective. I am used to going at 300km an hour and thrive outdoors in nature with my dogs, SUP Board, family and friends. I am not very good at lying still and being quiet and resting.
I however have had NO choice this time round as I have literally been hit from every angle. I normally negotiate or do “trade exchanges” with my ologists to go home and recover in my own space.
This time however I have literally had to practice what I am great at preaching and that is to simply surrender, listen and do what I need to do to reach that final stage when I can go home.
Through this journey however I have had so much time to truly realize how well my friends and family know me. How they know that in order for me to stay sane I need very little but I need connection, color, laughter, love and understanding.
I have been blessed with all of those in abundance this week. I have a room filled with brightly colored flowers. I have been brought all the most incredible healthy snacks , I have my special pillows from home so that I can support my body better, I have my journal so that I can write and process what’s going on and I have an utter abundance of love from every single person who is helping me recover.
The amazing thing is that not only have got these “things” but I have gotten the most incredible emotional support I could ask for because believe you me 17 days of being in a hospital bed with searing pain is not fun for anyone.
Today I must say that the trauma of what I have gone through definitely caught up with me and I am completely shattered. With the auto immune diseases I have, I have a biologics infusion every 7 weeks. What this infusion does for me is prevent my immune from attacking my joints and nerve tissue causing chronic pain and rendering me pretty immobile as it becomes very challenging find to walk.
When you have an infection in your body you cannot infuse as it literally switches your immune system off. To fight infection you need the immune system to do this job. It’s all very complicated and in my case especially challenging for the doctors as each of my issues compacts on another issue and standard solutions can’t be applied.
No one ever accused me of being an under achiever and like in everything in life I am certainly a unique challenge for the doctors but am going all I can to get better and heal bu just surrendering to what my body needs.
So as I end my day today I end it with gratitude and appreciation of all my amazing friends, family and medical staff for helping me to just heal so that I can once get up and get moving.
Finding moments to be truly grateful over the last 15 days in hospital has at times been extremely challenging. Part of me telling my story is to ensure that I am authentic always about what is really going on in my world and highlighting what is important in life.
In this current day and age where so many people live lives chasing some facade of what society deems the “ultimate ” life has become an obsession to own more STUFF, be more “SEEN” and basically be anything but truly authentic a lot of the time.
For me that journey and the pathway of meaningless crap and other people’s opinions of me ended when I stated to walk my journey with Chronic pain and illness. Don’t get me wrong I am no Martyr and often don’t get it right but I definitely think more and consider more and choose more what works for me than what I feel everyone else expects of me.
I have learnt that expectation can be the greatest downfall in life as by having an expectation of someone or something other than yourself is simply unrealistic and will more often than not end with someone being disappointed and it really is just a waste of valuable time and energy. Even having too much expectation of ourselves needs to be done realistically and not be a grave disappointment if or when it turns out differently.
Growing up I had someone in my life who constantly drummed into my head not to be “so melodramatic ” if I was sick or felt sad so I began a journey of doing everything I could to always be FINE! This was simply a belief system he had grown up with and was conditioned into him. It became something I bought into for a long time causing me to not always tell people when I felt excruciating pain or wasn’t well.
The joy however when you discover that these things, this stuff is just that a belief system that is set deep within your brain and it is something you can continue to buy into or you can simply choose to let it go and create a new belief system that serves you better is amazing.
I however now choose to work with that inner shadow part of myself and not fight it. I choose to look it in the eyes and give myself the space to be angry, frustrated or sad if that is what is what is needing to come out. When you allow space for the emotions you are feeling you allow space for healing. It really is just that simple.
Once again don’t think for a minute you gonna make a decision that it no longer serves you and you are gonna feel great and move on from it, it takes time, patience and whole lot of self love.
It takes self awareness and reflection to look at how you are communicating these exact belief systems that don’t serve you onto other people both consciously and unconsciously and it takes patience and awareness to do that. Rome was not built in one day.
While I have been lying here in my hospital bed for 15 days fighting off a whole bunch of infections, pain and frustration, I have also been able to spend time thinking about how truly blessed I am in so many ways. I have had time to reflect on all the possibilities ahead of me and I have had time to just simply be in the storm allow myself to go with it and just accept that everything is always exactly as it should be.
I have been utterly blessed with having the most important person in my life, my Mother at my side to hold my hand and tell me it will all be alright. Even though at times I know it’s been incredibly hard for her to see her child so sick and be terrified that maybe this time it wasn’t going be alright.
I have had my sisters, brother, sister-in-law brother-in-law, nieces, nephews, aunts, cousins and amazing friends from all over the world holding space for me, visiting me and loving me through this time in the most nurturing way.
My doctors , nurses, physio, tea ladies and cleaning staff have helped me through some truly tough scary nights all with a smile and kindness. Taking time to sit with me through my coughing fits and getting up new drips in the least painful way when they tissued,
I have also learnt that for a lot of people knowing someone who is chronically ill is inconvenient at times and uncomfortable at times as what can they really do but try be empathetic and supportive as there really is nothing else people can do. It is just simply what it is. The “IS-NESS” and that is OK.
To stand in my Authenticity is all that matters to me. To be the best version of my self every day in whatever form that may take is what is important. And no matter how tough it feels or how overwhelming it feels if you just have some faith and open your eyes to what Blessings surround you, you really can get through it.
Start every day with gratitude and humility and just be kind and gracious. It really doesn’t cost a thing to be kind and it is one of the most valuable gifts you can give.
Today I have reached the absolute end of my tether. I suffer from a myriad of Auto Immune Diseases that are all chronic conditions and take every ounce of my focus, positive attitude and strong will to simply keep moving day to day. One of the challenges of my disease is that I often get chest infections and have trouble breathing. Having suffered with these diseases over the last 9 years has been a daily exhausting fight to survive at times.
I have been a loyal client to Discovery Health for well over 22 years and to date have always had excellent service and support to help me get through the complications of my diseases. I have heard endless horror stories from friends of what nightmares they have experienced from Discovery, however had not until now experienced one of these. I must add that at the moment in my most dire need for the support from Discovery I am being subjected to the MOST horrendous treatment by the Medical aid.
On the 3rd January I had the misfortune of being rushed to Constantaiaberg Medic clinic with compromised breathing and what was presenting as pneumonia. Having called my GP to let him know I was heading to the Hospital and that I needed to see the Pulmonologist, he informed me to go straight to the reception and get checked into B Ward where the Pulmonologist would meet me and take over the course of treatment and get me stabilized. Imagine paying just under R7 000 per month for Medical Aid to have piece of mind that all would be in order when you needed it the most.
When I got to the hospital (who I must add where brilliant and are not at fault here AT ALL). They called Discovery Medical Aid to say I was being admitted under the instruction of Dr Hugh Wegner and that Dr Sean Rogers was on route to the hospital to attend to me.
Discovery at that point asked to speak to me (struggling to breathe) and told me that because I had not physically seen the Dr, I had to go through Emergency to be admitted or they could not get authorization. I informed them that the Doctor had instructed me to go straight to the ward as I am a well-known case and they know what needs to be done and pretty urgently.
Regardless this continued until I was barely breathing put in a wheel chair and taken into Emergency to await the Triage process. When it was completely visible to all parties that I was in distress and my breathing was shortening by the second. Anyone who knows anything about Asthma knows that it KILLS pretty quickly if not managed.
As I waited to be seen in Triage one of the Constantiaberg Claims Manager rushed in to say I was being moved to Ward B18 immediately as Sean Rogers was admitting me.
It then took the incredibly efficient Constantiaberg Staff about 15 to 20 minutes to get me breathing in a stable manner. I was then put up on a drip had a number of tests and had various high-level doses of cortisone, nebulizers, oxygen and meds via drip. During the entire process my sister was with me and bared witness that I was told all was in order and authorized was approved.
I then spent the next 5 days in the hospital receiving high doses of meds, oxygen and physio trying to get my lungs to open up and have some rest. Struggling terribly to breathe at night mostly and coughing up blood. My attending Pulmonologist then sent me for a cat scan to discover there was a mass up in the sinuses which needed to be washed out to clear the constant infected drip onto my chest and possibly get a much greater ease of breathing.
During all this news and the crisis of trying to keep breathing I receive a visit from the Hospital Admin team to say so sorry to inform you (6 days since being admitted and told all was in order) that my pre-authorization had been declined and that I was now liable for all costs until now.
Discovery had approved surgery but that there had been an incorrect admission process and the pre authorisation was still declined. This as you can imagine for a Chronically Asthmatic patient sent the stress levels off the charts and breathing became a challenge again.
In the mean time I have had to have Cat scan as was still not able to breathe and landed up have sinus surgery to try and clear two masses and try clear my airways. This surgery has been approved but STILL discovery reject the initial Authorization.
The BOARD of doctors who work with my complicated case on a daily basis have been fighting endlessly with Discovery supplying them with every ounce of information they require and STILL declined due to a technical glitch.
All the doctors are furious a from my file you can attest to the fact I was admitted by Sean rogers , he has sent all motivations to inform the medical aid how ill I am, and it has done nothing to help the situation. As I type this letter my chest is closing again as I am in distress. I have also been told that due to the nightly coughing spasms I have to undergo another small surgery tomorrow as now it seems the hiatus hernia is pushing through my Diaphragm causing further breathing challenges.
The entire process has been horrendous and at NO STAGE have I the client received any communication from Discovery until yesterday afternoon with NO explanation that the pre-authorization was not approved. Surgery one is approved and now possibly surgery 2 will be approved.
I am currently on disability so have no way of being Liable-for this bill. I believe that there MUST be someone who can help me out there? I need this sorted out or I really do feel that physically my body is going to just shut down.
As I lie here tonight on the evening of my 46th Birthday I am truly able to put Life into perspective. As most of you know I ALWAYS do something for my birthdays as my mom always says it’s the one day it’s ALL about YOU.
Well today was always going to be a little different from normal as I was gonna be in hospital and while I was not thrilled about it, I had made peace with it. The most incredible thing however was the amount of love care and kindness that was shown to me today that helped me put life even further into perspective.
Kindness and Love really is all we need to make the world go round and my oh my was I blessed with this in every way today. The depth of thought that went into making me feel utterly loved and appreciated was beyond comprehension. I started my morning pretty tired as again had struggled with another coughing fit just before midnight. My body was sore and flaring and my pain was draining and I felt pretty low. However this was not something that was gonna remain as in came Moni my legend nurse with a smile and care and got me all settled and comfortable.
Once he had me settled he proceeded to hand me a chocolate from his wife and son and say I got to wish you first! I just loved that he was immediately able to bring a smile to my face and turn a rather uncomfortable time into something special. What a special being he is.
My next encounter was being delivered tea by Tiffany and a song and kisses and hugs from Esme and Annamarie the ladies who make sure all my circulation and vitals are all doing what they need to be doing at 5 am. Such a sweet sweet thing indeed.
At 7:30 am I then suddenly had the entire morning staff of the ward come to my room and sing Happy Birthday to me in the most incredible show of affection I have experienced in a long time. Being the sentimental sap I am I was just blown away.
Then one by one special dear friends and family each started calling, FaceTiming, bringing Balloons, Home-bakes, Gifts and just an unbelievable amount of love. If you know me you know that I am not someone who needs expensive flamboyant things, I am someone blown away by sentimental thoughtfulness. Today I was completely surrounded by exactly that and more. Kindness, awareness, love, care and complete thoughtfulness.
I was not able to dance around and be the life and soul of the party like I normally am but was able to lie in my bed and be utterly appreciated, spoilt and feel totally thankful and grateful that I am alive.
So while the last 10 days in hospital have had a substantial amount of challenges and hurdles, they have also had so many teachings of what really is important in life. I choose to take the blessings of this experience of real kindness and hold it in my heart as my driving force for 2019.
Thank you to each and every single person who made my day a day filled with such love.