A lot of people say I seem to be a happy person. Others describe me as having a great sense of humour, being really funny. Although I wouldn’t argue with these descriptions as I often have a big smile on my face or am cracking yet another joke or terrible pun, I am hiding a secret. I feel ill every single day.
Thanks to Ehlers-Danlos syndrome – type 3 (EDS-3), I get pains in my joints and muscles constantly. My loose ligaments mean I am prone to subluxions, which is a partial dislocation (thankfully I don’t fully dislocate too often) and this can leave me in pain for a number of days afterwards. I also suffer from autonomic system problems which are common with EDS 3 including gastrointestinal symptoms, similar to IBS, difficulty regulating my temperature and a thudding heart. I also suffer from severe anxiety disorder which is made worse due to my autism and OCD.
So nine out of ten times, you will meet me and I will seem ‘fine’, apart from perhaps a groan of pain or a sigh that slip out from behind my ‘I’m okay’ mask. Behind my mask, I am probably feeling nauseous, dizzy and sore. I am probably worrying about something which will more than likely become a full blown obsessive thought. I am probably in agonising pain throughout my body.
I think this is why people are surprised when they see my mask slip. On one of these days, I have to stop. I have to give in. I have to curl up in bed in tears hugging a teddy against me. I have to let out the screams of anguish I have been holding in the whole time before. I have to let my body recover from itself. I hate being bedridden so I will always push myself to absolute breaking point before I allow myself a ‘sick day’ so when I have one you know I am in a huge amount of pain, discomfort and generally feeling awful. Today has been one of those days. I am burnt out and spent most of the day sleeping. Tomorrow will probably be the same. By the following day you might not even notice there was anything wrong.
I don’t want pity or people feeling they have to treat me different, but I do need people to remind me to stop pushing through once in a while. To let myself recover so I can be well for longer. But until I hit that point, there will always be a big smile on my face.