A Bed Time Story – 

I often think how much my sleep has changed since before my illnesses took charge. It is a painful and difficult trip down memory lane. You see sleep  has  become yet another one of the unpredictable things in my life and another thing I have little control over. 

Nothing has been left unaffected by these diseases. Nothing. 

I remember clearly how I was once an early riser and got up between 5 and 6am no matter what time I got to sleep. No, I SPRANG out of bed each morning. I loved dawn and the feeling of what might happen during the day. The sense of anticipation was always encouraging. I was always the first to arrive at work. I loathed being late to anything, but especially my work. 

That is no longer the case.

Sadly my sleep pattern revolves around my pain these days, my symptoms and my exhaustion. A flare will leave me with very little sleep at all. 

Most nights I can’t get to sleep before 3am due to the pain, fevers, dry eyes and throat. Also nerve pain and spasms means that it is impossible to find a comfortable position. I will toss and turn despite taking pain releif and attaching TENS machines and heat packs to my entire body. 

Other nights I will just not sleep at all. 

Some days I will have to have a series of naps due to an exhaustion like being crushed to death. Whilst I was having monthly infusions I could barely stay awake and experienced fevers and tiredness beyond words. Beyond imagination! 

Sleep is no longer restorative or relaxing but rather an act of sheer exhaustion and I dread the pain that will greet me when I wake. Stiffness. Swelling. Aching. Spasm. I dread every night and I can’t say I remember a night that was anything approaching ‘normal’. 

My husband has had to join me in many of the broken nights so that he can reheat packs, rub my joints, bring Meds and carry me to the bathroom. He too dreads nights and hasn’t had an uninterrupted night in over a decade. 

Sometimes he has even had to wake up to strip the bed. I wish it wasn’t so. 

I have done many things to add some joy to the struggle. Additional pillows to prop up shoulders, knees and feet. Soft sheets and quilts. Scented candles for distraction. Classical music. Pretty, colorful linens. Wonderful books scattered around my bedroom. Anything that will bring a happy ray of Hope. 

There is no easy way to describe the night time rituals that has now become our lives but it is a constant hope that one day we both will have a peaceful nights rest and that it isn’t just a dream… 

In the meantime I do enjoy watching my pets sleep and can’t help but l feel slightly envious that I can’t share in this simple pleasure. 

When a chronically ill / autoimmune sufferer wishes you a good night they are truly offering you on of the highest compliments and wishes that they can bestow; and one that they would dearly love to have for themselves. 

Sweet dreams! 

Gentle hugs, 


One thought on “A Bed Time Story – 

  1. Someday we will have to correspond. I have spent way too many nights awake. Look me up on twitter sometime. Your night is my afternoon, but you can tell me what happened before I get there. Maybe stock tips. That is how things work right?

    Liked by 1 person

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