Chronic Conditions
When do I shout BINGO? Most of my medical records are still Lloyd George and I have seen the absolute encyclopaedia Britannica stack that it is so it is going to take a long time to scan in all those records. These conditions are the ones that have either been officially diagnosed and I have the all important letter about it on file or the doctors have brought up and for various reasons (cost and time probably) are not going to officially diagnose.
Can you see the issue with this? How can I treat myself properly if some conditions are not official? Some treatments and medications require a treatment plan and journey. For some of my conditions I am not "ill enough" for the medics to investigate more. And yet they have noted it during operations for example.
Lorraine's List of Chronic Conditions (so far)
Hypermobile Ehlers-Danlos Syndrome
Short Sight -10 and a detached retina (healed)
IBS
POTS
Scoliosis
HSP w HSS
MCAS
Sluder's Neuralgia
Endometriosis
"When do I shout BINGO?"
Can you see what might be the issue with our current medial services? Nothing currently is holistic but it is quite clear to me that my issues with tissues are all interconnected and much like my fascia very frustrating when each condition is looked at individually.
Can you see how much time and energy it takes? If truth be told, I have spent so much energy in my earlier years wondering what on earth was going on with me. Why did I feel pain so much? Why did I trip up so much? Why do I bruise so easily? Why can't I see? WHY WHY WHY? It has been exhausting. As soon as the internet and social media took off I did Dr Google myself and very very slowly, like a 1million part telenovela I found out another part on this pain puzzle. When I was diagnosed with hEDS huge questions were answered. The relief of the diagnosis has helped so much.
I know that there are further conditions that I am at risk due to my hEDS. These include being even more at risk for the detached retina, hernias, NAFLD and many more. But the tricky thing is that hEDS is a spectrum and each Zebra is unique so I don't know which and when will happen next. I work my little compression socks off staying as well as I can be with diet, supplements, mental resilience, pacing and energy management and for those that know me IRL I am that child who got the A*s and loves a challenge so keeping well is my full time job. And still I feel pain. Still I will encounter more symptoms and issues with my tissues.
Keep well my paindrops
xx