‘AH, great, another day to spend in bed’ – said by no chronically ill patient, ever.
Living with the currently incurable, autoimmune Rare Disease, Scleroderma and Raynaud’s, for me, has certainly meant that I have had to spend more time in my bed over the duration of the last 19 years, than I have, anywhere else.
This has taken extreme self discipline and devotion on my part, which has been driven by the desire to get better.
In particular, constant chronic pain and sleep are an unlikely combination, and can cause immense disruption to the body’s natural, inbuilt clock, if not kept in check.
I wrote about my initial diagnosis in 1997, here
To read more about my ‘Tin man’ like symptoms, Click here
That is why human beings do not have night vision – because we are meant to be asleep during the night.
Just to turn over in bed would be sufficient, and still is, sufficient to wake me, due to the pain involved in trying to move my body to turn over.
I am no longer able to sleep on my right hand side as this induces acid to the back of my throat, even if I have not eaten for 5 hours beforehand.
I wrote about my Diet changes, here
As I know, that if I want to try and minimise the severity of my symptoms for getting through the following day, I need to have been horizontal in my bed for at least 8 hours.
I cannot remember the last time that I was able to sleep for this duration, however, I will make sure that my body has had, this length of time to rest each night.
I am no longer able to be the social butterfly who was the last to leave any bar / nightclub / party, opting to now stay at home in my pyjamas, with my own personal party.
The advantages of this being, that I get to choose the music, there is never a queue for the bathroom, and I minimise my Raynaud’s attacks by keeping cosy.
When living with scleroderma and Raynaud’s, 'silver linings' for what has now become a reality, are few and far between!
I wrote about this more in my last article ‘My job today is to simply get better’, Click here
I - my body, had been in training for this event, weeks prior.
For the days leading up to it, I made sure that my body was horizontal as much as possible.
It sure did feel good to be back wearing my suit and utilising my professional skills.
However, the aftermath of my body protesting to such physical exertion just for that one day, lasted a week.
The day after, I was unable to do anything, other than sit in a chair with my legs up, feeling as though I had run to the moon and back.
I only smiled in response, as I am pleased for the person who said it, that they do not live with a chronic illness, where spending another day in bed is a necessity, not a luxury or a personal preferential lifestyle choice.
For, I am the best judge for what is best for me, other than the scleroderma world expert Prof Chris Denton.
An edited version of this article was published here, in my Column with Scleroderma News. May 2017.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice