In my initial blog talking about my autoimmune journey, I shared some of my darkest and most vulnerable times as I grappled with my new diagnosis. I wrote the blog in June, when I was on my first round of immunosuppressant medication and all seemed to be going well.
I still remember the sinking feeling as I received a call from my Rheumatologist as I was walking around the shops one morning. Despite me feeling positive and my body feeling better, my inflammation markers were still far too high – the ‘softer’ medication was not working. He was insistent that I work towards the original plan of weaning the baby and commencing the more hardcore drug that I was so fearful of, it is used in much higher doses as a chemotherapy drug. It also brought up my anguish and reluctance about weaning, somehow I thought I had got away with it and I was going to have my cake and eat it too.
In the three weeks leading up to commencing the new medication, I gradually reduced my baby’s feeds, with his final feed happening on his first birthday – the 29th July, 2020. It was a surreal and devastating moment for me, one I still have sadness about today, almost four months later. This same evening, I took my first dose of the new medication with resentment and tears in my eyes. Again, I felt like I had failed. I then waited anxiously to see if any of the long list of common side effects would hit me; nausea, vomiting, hair loss and weight loss to name a few. I had already lost almost 9kg from March – May; I was not in a position to lose anymore. Fortunately, I adapted to the medication well and have not experienced any of the listed side effects.
However, despite being on the ‘gold standard’ drug for treating Rheumatoid Arthritis, my inflammation markers continued to stay elevated and my joints and body were still not allowing me to function properly. As an interim approach, I had been put on a high dose steroid whilst the new medications kicked in. This provided me with some amazing relief, but is not a long term plan as it has a whole other set of consequences for long term use. As it is, I have been on some dose of steroid now since March this year. I am finally being weaned off them, month by month, but I will not be completely off them until March next year. That is a whole year of being on steroids, which is not ideal at all.
At my next check up with the Rheumatologist, he informed me that I needed to consider an additional immune suppressant to really ‘dampen my immune system’. I recall sitting in his office as he wrote the script thinking stubbornly, I won’t be filling that script, I don’t need to be on another medication. I was so determined to fight the help all the way, I know this is not particularly healthy or helpful, it was just causing additional stress for my mind and body.
Around mid October, I conceded that my body was still struggling, and I commenced the new medication. This time around, I felt more of an acceptance that this is what I needed. However, I still shake my head in disbelief when I think about all the medications and vitamins I am currently taking. I have tried to consciously shift my state to one of gratitude for the wonders of modern medicine, which has allowed me to resume my life of movement once more. I had a running race with my big children the other day. My ankles hurt a lot after (but I’m probably also really unfit!), but the simple act of being able to do this is not lost on me. I am so grateful that I have been able to do this again.
In the last month or so, I have experienced some complications with my health, which I believe have arisen as a result of the immune suppressant medication, and general state of my now ‘dampened’ immune system. I am awaiting an appointment with another specialist who will hopefully identify what is happening and set some measures in place to help me back on the path to good health. This has been a bit of a reality check for me. I had returned to work 2.5 days, was enjoying juggling the children’s schooling and extra curricular activities, writing my blog and working on a new creative project targeting young people and trying to have a social life too. It appears that despite my words in my first blog about taking time out for me and listening to my body, I need this message to be bludgeoned into me every so often, so I don’t forget! I believe this latest health scare is a clever way of ‘helping’ me to re-calibrate.
I have spent a few weeks away from work and between several trips to ED, numerous visits to the GP and now multiple specialists to juggle, I have taken time to pause and really look at what’s going on for me. My number one priority is my husband and children, and as such, I need to ensure I am energetically aligned to this. I am also taking great pleasure in my writing. It has become a necessary part of my week, one when I get to go inwards and just divulge what I need to get out. It is a critical part of my healing journey, so if for no reason other than this, I will continue to write. The Mindful Creators program, working with my wonderfully energetic and uplifting partner rings so true for me, so I am dedicated to this path. Without my health, I am unable to commit anything to these things that are so important to me. There are also a myriad of other things that currently make up my world; my career, social engagements, extended family plus the million other micro tasks that comprise our world. These are the parts I need to re-evaluate and decide how I allocate my energy and time to these. I have to be prepared to make some sacrifices in order to serve me, and continue to heal.
I would love to hear how you manage your time and ensure your energy is focussed on your true priorities in life. How do you discern between things that are actually important to you versus obligatory commitments? How do you catch yourself and refocus when you notice you are not spending your time on the things most important to you? Please feel free to share your thoughts.
Love Tash xx