1 - Medical support
It’s an obvious number one but it’s vital to get things tested, ruled out, discovered, treated, assisted with the right medicines etc. For most of us the early part of the journey is filled with appointments, telling the story of what’s happening inside you, trips to A+E, telling and re telling the story to doctors, nurses, consultants etc.
There are things that can’t so easily be discovered with one simple test so there are thing we also need to do ourselves. Learning about and then ruling out where possible things like MCAS (mast cell activation syndrome) will help, along with understanding the signs of Dysautonomia and POTS (postural orthostatic tachycardia syndrome) and what can be done about it. Also looking at the bigger picture of your general health - is your body prone to joint hypermobiity, do you have any neuro divergence or history of auto immune conditions such as Ehlers Danlos, Epstein Barr etc - these are all part of a pro inflammatory condition group that is worth understanding a bit more about.
As patients we need to understand the limitations of existing Western medicine as it can’t always answer the ‘why is my body doing this’ question which some people find incredibly frustrating and dem oralising. Research that has happened over the past few years isn’t really coming up with anything hugely groundbreaking yet and I hope that this increased demand for knowledge encourages a deeper dive into the Mindbody connection showing the importance of regulating all systems along side medicating only certain symptoms - we are like icebergs, the symptoms are just the bit showing up above the surface. Finding a doctor that is empathic, experienced with Long Covid, CFS and ME and compassionate enough to listen to your worries and the lived experiences of your illness is actually a really good indicator of you getting through your recovery journey quicker. Talking to a good Occupational Therapist can also really help you navigate the early days of pacing and learn how to expect less of your bodies ability for a while. How you treat yourself in the early days of a long term illness can impact how long it takes you to make any progress.
