‘Ah, Great, Another Day to Spend in Bed,’ Said No Chronically Ill Patient, Ever

‘Ah, Great, Another Day to Spend in Bed,’ Said No Chronically Ill Patient, Ever

Living the Dream Scleroderma Style
“Ahh, great, another day to spend in bed.” I’ll bet no chronically ill patient has ever said this. Living with the currently incurable rare diseases scleroderma and Raynaud’s has certainly meant that I have had to spend more time in my bed over the last 19 years than I have anywhere else.

Upon my enforced career change to repair my body, my full attention is dedicated to minimizing my symptoms to a tolerable, manageable level. This has taken extreme self-discipline and devotion on my part, driven by my 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 clock if not kept in check.

I would spend days in agony, which turned into weeks and then months and years. I was barely able to do the simplest of tasks. With my entire body in pain and a lack of sleep as a consequence, this dictated what had become my reality.

I learned 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. Our natural body rhythms are to be awake in daylight and asleep at night. That is why humans don’t have night vision – we are meant to be sleeping during that time.

Sleep is extremely important to allow the body to naturally repair and heal itself. Turning over in bed is sufficient enough to wake me due to the pain involved in trying to move my body. I am no longer able to sleep on my right side, as this induces acid to the back of my throat, even if I have not eaten for five hours beforehand.

I am extremely disciplined with myself when it comes to sleep. I know that if I want to try and minimize the severity of my symptoms to get through the following day, I need to be horizontal in my bed for at least eight hours. I cannot remember the last time I was able to sleep this long. However, I will make sure that my body has had this length of time to rest each night.

Scleroderma takes the most vibrant of personalities and morphs them into a shadow of their former selves due to its devastating harmful effects. I am no longer able to be the social butterfly who was the last to leave any bar, nightclub, or party, opting instead to stay home in my pajamas, with my own personal party. The advantages of this are that I get to choose the music, there is never a queue for the bathroom, and I minimize my Raynaud’s attacks by staying cozy. When living with scleroderma and Raynaud’s, silver linings are few and far between!

Over the last few years, my return-to-well-being routine has included several adventures where I could assess the level of the reality of my return to work.

My most recent outing was a few weeks ago to the Family Court at Preston Crown Court. My body had been in training for this event for weeks. In the days leading up to it, I made sure that my body was horizontal as much as possible.

On that morning, I set my alarm to ensure I had sufficient time to carry out my three-hour required routine before I can leave my home. It sure felt good to be back wearing my suit and utilizing my professional skills. However, the aftermath of my body protesting 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.

Someone said to me recently, “It is OK for you – you can spend the day in bed.” I only smiled in response because I’m pleased the person who said it does not live with a chronic illness.

Spending another day in bed is a necessity, not a luxury or a personal lifestyle choice. It is on these days I remind myself that my job for today is to simply get better — as well as to be independent of the good opinion of others.

Living the dream, Scleroderma Style.

#SclerodermaFreeWorld #RaynaudsFreeWorld

Please donate to my Just Giving page here for the SclerodermaUnit-Royal Free Hospital where 100 percent of your money will be used for medical research purposes only. Thank you.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

One comment

  1. April E says:

    My husband has left me and our son now I’m so screwed and wore out from trying to do all the things he used to do for us , I have to climb the stairs every morning ( I have a no stairs restriction from my Rhuemy) but my husband didn’t seem to think about this when he picked this home for us to buy . My son plays baseball and since I’m now a single mom I have to take him to his games sit in the bleachers and then drive us home from the ball field. Wash his uniforms at least 3 times weekly and my hands are deformed from this hellacious disease . The pain is non stop and the other symptoms like vomitting, diarrhea and difficulty breathing. I have an adjustable bed that helps me battle the constant acid coming up my damaged esophagus. I no longer have a social life. I used to coach soccer and was very active in the gym and always doing things with my friends and their families. Now here I am sick , alone and depressed. My son has been through enough already.

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