2020

2020 has not been what anybody expected. In Australia, our year started with dreadful bushfires and then we became just another country in the world impacted by COVID-19. Whilst we have been incredibly fortunate to have kept outbreaks to a manageable level, the effect of the economic devastation and pressures on mental health are taking their toll on many. The year has been a very different experience for me. Whilst deeply affected by the strain COVID-19 is having on the world, I am very conscious that the lockdown in Victoria has in some ways protected me. Navigating changes to my health and lifestyle and coming to terms with having a chronic illness has all been managed within the safe confines of our little locked-down home. It has provided my mind with time to catch up with the rollercoaster my body has been on. In addition to working my way through symptoms, copious medical information and a restricted diet, it is the moving goalposts which have been the most difficult to manage.

Until recently, I had started to get my illness well under control with a diet specifically designed for people with mast cell disorders. There were even some good days with only minor symptoms which had me excited beyond words. I was feeling (almost) myself again and most importantly, in control. Unfortunately, recent surgery has thrown an irritating (but not insurmountable) spanner in the works. The surgery itself was minor but it was the cocktail of medications I knew I had a high chance of reacting to that had me worried. I made it through the surgery without a reaction and for that I am definitely grateful. It does however appear that ninety minutes under a general anaesthetic was enough to kick my mast cells back into high gear and as such, my reactions have been slowly escalating ever since.

At first, I didn't think much of it and tried to stick to my safest foods in the hope that things would settle down. Then a couple of  days ago my throat started to close after eating a plate of my safest foods. I have always been warned that people with MCAS should have an EpiPen, even if anaphylaxis had not been a problem in the past. I ignored this advice thinking that I had everything under control and that things could only get better. I was wrong and am now the (not so proud) owner of an EpiPen and importantly, a trainer EpiPen which I plan to practice with until getting the stabbing and injecting parts in the right order without having to think about it. My husband is trained and soon my boys and family will be too. 

I am definitely not writing this post so that anybody will feel sorry for me. I don't even feel sorry for me. I just felt it was important to share my experience with all of the MCAS warriors who are reading this so that they might take things more seriously than I did. And to soften the post (and the photo!) I thought I would share just one of the things I am very grateful for right now which is my beautiful herb garden. It continues to improve the nutritional benefit and flavour of my ever shrinking list of foods and its greenery always makes me smile. The photo is of today's herbs - mint for a smoothie, parsley for a yolk scramble, sage for my tea and rosemary to flavour my lamb for dinner.   

And just to finish on a REALLY positive note, I am also grateful to my gorgeous little family who ride every little bump with me and make me happy every single day. I am also grateful for my virtual MCAS family who are riding similar bumps of their own and who so openly share their own stories so that the strangeness  of my experiences don't feel so strange after all.

 Life could definitely be much worse ❤️