Ehlers-Danlos Syndrome, health

The New Normal

To state the obvious, I haven’t blogged in a week. I did have good intentions to but EDS clearly had other plans. I was diagnosed with EDS Type 3 in September 2013, a mere few weeks before I left to go to University and have pretty much buried my head in the sand since then.

As anyone who knows me well will know, I have always been a positive person and I don’t particularly like to show my emotional side so for the last four years I have laughed and joked about my condition to other people, whilst simultaneously feeling anxious and upset about it when I’m on my own. But I’m learning, I’m learning that it is okay to moan to those close to me when I’m in pain and it’s okay to ask for help when I need it and to stop pushing myself.

I woke up on Monday morning feeling thoroughly miserable, my arms and legs felt heavy and weak, my brain felt foggy and I had searing pain through my wrists and fingers. I practically crawled downstairs to have a quick breakfast before going to work and begged my mum for a hug as I felt so utterly crap. The last thing I wanted was to go to work especially as I haven’t really opened up about my condition to my colleagues as I didn’t want anyone judging me.

I couldn’t hide the pain though as it was clearly etched all over my face, my colleagues asked if I was okay and rather than replying with the usual “I’m fine, just tired”, I told them the truth and miraculously I started feeling better throughout the day. Don’t get me wrong, the pain was very much still present and no painkillers were touching it but my mood was lifted. Not having to hide my pain felt like a weight was lifted and I couldn’t have been more wrong if I tried thinking my colleagues would judge me.

I learnt from Monday and when Wednesday came (the day I was planning on writing and publishing another blog post) and the pain was still there, I simply decided to not blog. It wasn’t worth the pain. Instead I got home from physio, changed straight into my PJs and snuggled on the sofa with my mum and Merlot – the perfect therapy.

I am slowly but surely coming to terms with my “new normal”. I might spend a typical weekend asleep for half of it rather than going out and getting drunk with my friends but I couldn’t be happier. Whilst EDS is crap and sometimes feels like a living death, it’s also made me value life so much more. I’ve already missed out on a lifetime of memories with my dad, I will not miss out on any more with those I love.

So, whilst a one hour brunch with my mum might be all I can manage in one weekend, the memories are worth far more to me than a night out with my friends, which I can barely remember.

As I write this, I am curled up on the sofa with Merlot waiting to pick my brother up from the station and come home to eat Chinese and take the piss out of each other – it’s the little things in life!


 “Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain”

1 thought on “The New Normal”

  1. This is great in fact you may have inspired me to start blogging. BTW if you have not tried it a great dictate to type program is Nuance’s Dragon 13 it is way better than Apple’s, Google’s or anyone else’s for that matter. Also be careful of “PT”, I do not know a huge amount about EDS but I know a bundle about chronic pain and I know a number of people with various causes of chronic pain who find PT only makes things worse or does not help their pain me being one such person. I have always found that chiropractors and physiotherapists alone may help first they have a habit of continuously making new appointments for you even when any improvements they have are either negligible or not at all or as I said in my case making things worse but they just don’t want to either admit defeats all let you go as a patient due to reducing that income etc. I hope that you are having less pain now and just thought that it was worth giving you my perspective with respect to PT as well as the Dragon software. Remember that you can call me at any time day or night and I mean that whether it is UK time or USA time. Love you


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