As someone with Chronic Fatigue Syndrome I was surprised and excited to learn that there is a day dedicated to the thing that I never seem to feel like I’ve had….SLEEP!
Celebrated on January 3rd each year, the Festival of Sleep day was started by someone with a total and utter adoration of sleep – I did try to find out a little more about this person but there isn’t much out there to find so we’ll just have to go with it being someone some while back. It is a day when all the partying for the Christmas and New Year celebrations has caught up with us and all we want to do is slip into the PJ’s, climb into bed, pop on the eye mask and SLEEEEEEEEEEP!
What is Sleep and Why do we need it?
Sleep is one of the basic human needs we each have and without it we become very different in character and appearance. Sleep is designed to support our bodies in ways that sometimes are not even considered in our busy day to day lives.
While you are lying there getting in the zzz’s your body and mind are working together to repair and regenerate ready for the next day. Giving you energy and a balanced mind which is alert and ready for action. Sleeping is like an office clerk, it sorts and stores everything from that day so that we may recall activities or information when it is needed.
Interestingly, as I write these words I’m experiencing a lightbulb moment as to why I don’t remember many people, activities or events from my younger years – I was never very good at going to bed as a child, frequently staying awake until the early hours, as a teenager I thought it was cool to ‘pull the odd all nighter’ and as a twenty-something, with two young children, I worked hard and played hard.
What sleep deprivation looks like!
When the tiredness creeps in and your driving along the road, will you see the little girl run out from behind the car on the left because she’s chasing her ball? What about the motorcyclist on the road you’re about to pull out onto? Will you see them? Really?
Trying to get yourself through the day and remembering the word for that thing you put the bread in, you know the one, the bread pops out all golden brown and warm after a few minutes. What about that whatsit you take a drink from? Often referred to a ‘Brain Fog’ and when it kicks in, boy, does it make you feel and sound really dumb.
I’ve opened the freezer drawer and told the puppy to get into bed and threw socks in the toilet instead of the wash basket.
Nothing works how it should anymore with the attention span of a gnat, an alertness thats more like a firebell without the brass ringer, concentration, reasoning and problem solving skills continue to evade on a daily basis, making learning and productivity a thing of the past.
Not getting enough sleep can lead to a myriad of long term health conditions such as Heart Disease, Heart Attack, Heart Failure, Irregular Heartbeat, High Blood Pressure, Stroke and Diabetes.
What is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome (CFS) also known as Myalgic Encephalomyelitis (ME) is an extreme tiredness, one that rest and sleep have no impact upon whatsoever. It’s a constant feeling of being generally unwell with a wide range of symptoms;
- Sleep problems such as Insomnia
- Muscle and joint pain
- Headaches
- Sore throat, sore but not swollen glands
- Flu-like symptoms
- Feeling dizzy and sick
- Heart Palpitations, irregular heartbeat
- Cognitive problems which make you feel thick and stupid
The actual cause of CFS/ME, beyond over exertion over a long period of time, is still unknown. There have been many suggestions as to its origin, some of which include;
- Viral Infections with glandular fever often being linked
- Bacterial Infections which could be from something like an infected tooth abscess
- An Immunodeficiency disease such as Lupus or Rheumatoid Arthritis
- A Hormone imbalance
- Mental Health such as stress or emotional trauma
- There are even some suggestions of it having a genetic origin as more and members from the same family(s) are receiving such a diagnosis.
Treatment of Chronic Fatigue Syndrome
Many Doctors still don’t understand the effects and the impact which Chronic Fatigue Syndrome has upon an individual on a day to day basis. Often suggesting Cognitive Behavioural Therapy (CBT) combined with exercise, built up gradually over time, and medication is enough to send you on your way.
That would be great if I had appendicitis, or gall stones, they can be fixed with a bit of medication, a quick operation and some recovery time. Chronic Fatigue Syndrome is a very different beast altogether. Whilst CBT, gentle exercise and medication go along way to treating the symptoms, they never get to treating the cause, nor do they recognise the impact of medications and worst of all they create further complications and the medication list gets longer.
They give you medication for the pain, medication that on the label reads “may cause drowsiness” another for the nausea, oh and then some for the constipation caused by taking such a concoction of tablets. Just when you thought they couldn’t add anymore and you are desperate for a good nights sleep so you take the prescription for the sleeping tablets, which just make the waking hours even more exhausting.
The Reality of Living with Chronic Fatigue Syndrome
Chronic Fatigue Syndrome strips you of the person you once were but it does create a whole new you. Once you learn how get through each day the best you can, how different activities drain more than others, how to laugh at some of the daft things, focus and fill the mind with positive influences, life does become fun again.
Although fairly well managed on a day to day basis CFS does still pop its head up, sometimes more frequently than others, letting me know its still a part of my life.
I still own more sets of pyjama’s than I do clothes and they are always my clothing of choice whenever possible. My living room is covered in fluffy blankets and soft squidgey pillows. Routine and pacing have become the go to for planning out my day, my week, my month and when things change, meetings rearranged, appointments cancelled, activities rescheduled, it knocks me off course and into a ‘flare up’ for a quite a while. Whenever I get home from a networking meeting, or something similar, I collapse down the back of my door, in total exhaustion, and just need to crawl into bed.
All of that is OK because it’s how I manage to get by each day while living a life as full as possible.
If you would like some more information on living a full life with Chronic Fatigue Syndrome get in touch today [email protected]
