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Louise Cook

2016-07-20 16:37

Delphine's story

I am 35 years old and I have been suffering from quite severe Fibromyalgia for two and a half years. Complicated by Asperger Syndrome (or ASD) with hyper-sensitivity to sense, including pain, this condition has been entirely unmanageable since it first started back in November 2013. I have had to give up my job, my career, my home in London and my relationship because of this, and had to move back home to the Snowdonia Valley of North Wales so that I can be looked after by my parents.

This condition changed my life completely since it started out of nowhere, from being a successful IT consultant in London, living with a partner, a dog, going on long walks and enjoying my hobbies, I have been left completely disabled, immobilised, and with psychological issues since (because of the medication's side effects, the ASD, and dealing with such exhaustingly severe pain all the time every day). I have gone from having a good life with an upwards-trajectory career and my own family, to being trapped in my own body, in a room, in my parents' house. This has been my worst nightmare come true.

I unfortunately have no way of controlling this pain. Sometimes it is quite literally too painful to even breathe. At these points the only pain relief I can be given is strong alcohol since, due to complications with general analgesic drugs, I am not able to take any. The upshot is that I am never out of pain, and a particularly good day is a 7/10 on the pain scale. The average day is around 8.5 – and that is with medication (Pregabalin). Without it, I am in unbearable agony nowhere near the pain scale. A lot of it is due to the appalling weather conditions in the part of the country I live in. I was never this ill in London, where the weather is more stable, and is far more south anyhow. The only little relief I can gain otherwise is from heated “wheatie" bags and soft toys, often having to be covered in several of them quickly as the pain suddenly becomes out of control.

The weather every day makes my condition more than ten-times worse. I can almost unequivocally tell the weather by how much pain and stiffness is in my joints and bones. I moved from London back to north Wales in November 2015 to live with my parents – just as the awful string of storms set in. For months I was in torturous agony every single day, most days unable to leave my room, requiring assistance for even going to the bathroom. The weather has not become much better since. All the plans I had for rehabilitation evaporated, and I have been able to manage so very little of what I had planned for myself, simply because it is too painful to move. My parents need to do almost everything for me, and my father is now my registered carer because he does so much for me. He is into his 60s; my mother is just 60 and still works as a full-time nurse. Yet they are the ones that have to still care for me on top of that – and the guilt of this is insurmountable.

There is unfortunately no real good side to this story. I feel imprisoned by my own body with this condition – unable to do anything. I spend my days in my room, with my computers, unable to leave. I can't use the stairs most days, thus I am stuck upstairs, room-bound and house-bound because I cannot move. It's not for the want of trying – I have all sorts of things to try and help me, but they are too painful to use. Where I now live is in the hills, next to the mountains of Snowdonia, at a much higher than usual altitude. At times like these, when the weather is damp, rainy, chilly, cold, windy, my ensure body seizes up and I can't even breathe without immense pain tearing through my ribs. The weather has an extreme and direct effect upon me that I cannot control, and until the weather changes into something warmer, I shall not be able to move much from my room at all, let alone be able to do things that are vaguely normal, even with help.

I personally am in no doubt the weather/pressure/temperature (etc.) has a monumental effect on conditions of chronic pain and am very grateful that this study is being done, and that someone actually wants to research it and help, so thank you and all the "Cloudy" team for being a part of it.