Tuesday, 9 May 2017

AH, great, another day to spend in bed’ – said no Raynaud's, Scleroderma Rare Disease Patient, ever - Nicola Whitehill

‘AH, great, another day to spend in bed’ – said no chronically ill patient, ever. Living with the currently incurable, 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.  

Upon my enforced career change to repairing my body, my full attention is dedicated to minimising my symptoms to a tolerable manageable level. 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 

I would spend days which turned into weeks and then months and years, in agony, barely able to do the most simplest of tasks, whilst the pain of my entire body and lack of sleep as a consequence, dictated what had become my reality. To read more about my ‘Tin man’ like symptoms Click here  

I learnt the hard way that a sleepless night followed by a day in bed, in an attempt to ease the exhaustion, was not a good mix, since our natural body rhythms are to be awake in daylight and asleep at night. That is why human beings do not have night vision – because we are meant to be asleep during the night. 

Sleep is extremely important to allow the body to naturally repair and heal itself. 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 

I am extremely disciplined with myself when it comes to sleep. 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 have mentioned in previous articles, in my view, scleroderma takes the most vibrant of personalities and morphs them into a shadow of their former selves due to the devastating harmful effects it causes. 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!

Over the course of the last few years, my return to wellbeing routine has included several adventures where I could assess the level of the actual reality of my return to work. I wrote about this more in my last article ‘My job today is to simply get better’, click here 

My most recent outing to test my 'return to work' capability, was to Preston Crown Court appearing in the Family Court, only a few weeks ago. 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. 

On the actual morning, I set my alarm to ensure I had sufficient time to carry out my 3 hour routine required, before I can set out of my front door. 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 wrote about the full time job of managing my symptoms here  

‘It is ok for you – you can spend the day in bed’ is something which was said to me recently. 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, it is on these days, that I remind myself - 'my job for today is to simply, get better', click here,  as well as, to be independent of the good opinion of others. 

An edited version of this article can be found here  in my  column  with Scleroderma News. 

To read my articles:
The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 
BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  
EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  

Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.
Living the dream, scleroderma style, hoping for a cure
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 29th June World Scleroderma Day. Read more here  

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