This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

I have an exposition of sleep come upon me

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You spotted snakes with double tongue,

Thorny hedgehogs, be not seen;

Newts and blind-worms, do not wrong,

Come not near our fairy queen.

I chose to begin with two quotes from Shakespeare’s play A Midsummer Night’s Dream. I felt it most appropriate as I have been drifting in and out of an almost magical state of lethargy similar to that of the characters of this popular play.

 

The term Chronic Fatigue is one that is being thrown around but I, for one, had such trouble honestly getting my head around the idea until I had been experiencing it for over a year. So let’s break it down before I talk about mine.

Chronic according to the dictionary is defined as constant; habitual; inveterate. In specific reference to a disease the definition is: having long duration (opposed to acute).

Fatigue is defined as a weariness from bodily or mental exertion. To fatigue is to tire, debilitate, enervate, to weary with bodily or mental exertion, exhaust the strength of.

Anyone that has experienced, or shares their time in close proximity with someone who is living with an on-going health condition may be aware of this term. They may have noticed the energy levels of themselves or this other can swing as dramatically, yet as consistently, as a pendulum. There are times of ‘up’ with good communication, frivolity and vibrant individuals. In these moments the sun shines bright as it does on a clear Spring Day. The grass seems greener and everywhere trees rustle in the soft winds making music to relax the senses and calm the soul. The water glitters blue and clear, inviting the toes to skim the surface, breaking the tension in a delicate manner that sends cool pulses up the spine. The sense are awash with the joy and beauty that is nature and life.This is the ‘up’.

Then there is the fall. The ‘down’. Where you actually ache in your soul to move out of bed. It is a sort of depression that chokes up your muscles, blood vessels and bones. Your shoulders feel as though you spent the day before fasting and carrying trucks tyres on your back. The effort of holding your eyes open invokes a heaviness in your heart like someone has personally offended you. The numbness of using your facial muscles and thinking comes from working so hard to hold back the tears.Your whole body suffers from the loss that is the withdrawal of energy in the same way that I imagine most people would feel during a hang-over or withdrawal from a drug addiction. This is the ‘down’

It is essential for anyone that is unwell to ensure they maintain a regular sleeping pattern. It is vital they get at the least the minimum recommended amount of sleep, of course, but it is incredible how much more sleep is needed than this initial amount. To say people with Chronic Fatigue or a health condition that induces some type of lethargy feel ‘tired’ often would be a severe understatement. I like the terms fatigue or lethargy because they seem to me to carry the weight of the situation.

In my recent years I do not hide the weight of my weariness, or how I have found my best coping strategy. I have actually made a bit of a positive ‘joke’ out of it as I do, as I have found this is the best way to convey the circumstances to the people in my life so that they accept it without judgement or bitterness.

You see, at the end of 2012 I resigned from full time employment. I had some money saved and a very loose plan. I undertook my yoga teacher training in January 2013. From there I thought I might finish my correspondence course in Education Assistance, and possibly start up my own business teaching yoga for rehabilitating people with specific body ailments. The main idea for my life direction was to sort out my mental health, which had not been faring too well for the few years prior. Considering my physical health had been through some hoops, my parents were very supportive of the idea of me taking time out to rebalance all areas of my health and then to find the right direction to take in life.

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This is how I became a Lady of Leisure. That is my term for it. Many people laugh, but I would prefer that to the potential criticism that could come my way. What it actually means is that I lived off my savings and the meagre money I was earning, plus help from m y parents. They were sure that it was worth the cost to see me well again. I did a lot of writing and reading. I spent a lot of time loaning books, films and TV shows from friends. I learned to appreciate walking and simplicity, listening to the radio. It was during this time I grew to prefer my own company, as before I had strongly dislikes being alone.

The most important connection I made as a Lady of Leisure was how much of an impact my sleep had on the rest of my life. I slept a lot, ten hours or more at a time. I was sleeping in until almost lunchtime, which was unusual for me. I was crying from exhaustion on top of this around midday each day. The weariness my body was finally able to shake off was an accumulation of almost ten years of self-abuse through living a life that was not beneficial for my condition.

Through 2013 I reset my body clock. My new body bedtime became 9:30 pm (ish) and I would wake up around 7:30 am (ish). I allowed for a natural awakening until I was feeling stronger within myself and I have realised and established these times are what my body needs daily to maintain good health. If I put in extra effort clearly I need more sleep, in which I allow for natural awakenings on the weekend. I also try to go to bed a few times a week without ‘aids’. By this I mean without reading before bed, without a peppermint tea or lavender on my temples, certainly without sleeping pills.

I am studying now semi-regularly, I say this because university has relatively large breaks between semesters. During semester I ‘follow the rules’ with alarms and earlier wake ups to have a proper breakfast and present myself nicely for a day in public. During the breaks and holidays, however I try not to make any plans or exert any energy regularly until I have caught up on sleep and regulated my body clock once more. I am loathe to think how my body will handle the stresses of a full time job again.

I know I have talked very specifically about myself in this post. What I would like you to do is take a moment to reflect on how long and hard I worked to regain my sleeping pattern. It was two years to recover from almost a decade in which I admittedly wasn’t half as active as some adults are.

This is the nature of Chronic Fatigue. This is how severe it can hit and what a person needs to go through.

Do you know someone who suffers in this way? Have you blown it off to some extent or not fully considered the magnitude of what they are going through? I know of people that sleeps literally for days and when they wake aren’t able to get out of bed. Very few people are fortunate enough to have even half of the support and opportunity I have had to recover. I’m not saying to get fully on board if it’s too much, just appreciate and empathise. Give them a break.

If you suffer in this way ask yourself; are you taking care of your body? Are you giving your body an appropriate opportunity to heal itself? You should, you deserve it.

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

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