Unspoken Conversations are the topics that are often swept under the carpet, whispered amongst the closest of friends and bitched about by many. I want to create awareness about difficult things that people face in life; grief, mental health, money, illnesses, family troubles, relationship difficulties and putting yourself first. I want to tell the truth about things that really matter.

Sunday, 16 September 2012

What it's Like to Suffer from Chronic Fatigue Syndrome.

Chronic Fatigue Syndrome - what do you think when you hear those 3 words? I know that I think of someone being extremely tired all of the time and not just exhaustion tired, as in, can not lift-their-arms-above-their-head-tired. Today I welcome Natasha to my blog. Natasha suffers from ME/CFS. What does this mean? Read on to find out her daily struggle in today's blog. I am SO proud of her for sharing her story with us today - it's a very brace thing to do.

What do you think of when you hear that someone has
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?

Common perceptions of this illness range from thinking that sufferers just feel tired all the time, to an understanding of ME/CFS as a psychosomatic illness or a sickness for lazy people. Others think it means being a bit more tired for a year or so after having had glandular fever. Many people with ME/CFS are labeled as depressed and told that they are not physically sick at all.

As someone who lives with ME/CFS these misconceptions HURT.

ME/CFS is a real physical illness.

Much of the misunderstanding of this illness is because there is no one test that can be done to detect it, this side of an autopsy. Its symptoms are many and varied, and it is, in large part, an invisible illness. Like a mental illness, in a crowd we may look no different to the healthy person beside us. But that does not mean that we aren’t physically sick. While death is rare, ME/CFS has been listed as the cause of death by autopsies done in the UK, US and Australia. For the rest of us, while it may not take our life, there is much that this illness does take from us.

I hope, through this blog article, to correct some common misunderstandings and help others understand this illness better.

“It’s all in your head…”
ME/CFS is a physical illness NOT a mental illness. It is primarily classified as a neurological disorder, but also affects the immune, endocrine, gastrointestinal, cardiac and musculoskeletal systems. It can rear its ugly head suddenly or gradually over time, and last for a couple of years or for a lifetime. Most people with ME/CFS never recover full health.

It is true, however, that many people with ME/CFS also struggle with depression to some degree. If you woke up every morning for weeks, months and years on end feeling sore and completely exhausted, couldn’t work, couldn’t exercise, couldn’t go out and spend time with friends, had to adhere to a very restrictive diet because even many types of foods made you feel worse, and on top of that, no one seemed to understand, not even your GP. Imagine if, while enduring all of this, you were told that “it’s all in your head!” called lazy, fussy, a drama queen, and told that you’d get better if only you would exercise more and think positively… don’t you think you might start to feel a little bit depressed?

Just tired?
The name Chronic Fatigue Syndrome is an unfortunate title for this illness, because it encourages the idea that ME/CFS just means feeling tired all the time. That is so far from the truth.

Yes, as a sufferer of this illness I feel tired. But I’m not just talking about feeling like I could have done with an extra hour or two’s sleep. I’m talking about experiencing indescribable, bone shattering exhaustion, and tiredness that seeps into every cell of my body. Then there are all the other symptoms.

The symptoms of ME/CFS are many and varied. No one sufferer will experience the same set of symptoms to the same severity, but all will experience much more than just being tired. These symptoms are often so severe that it is common for people with ME/CFS to become bedridden for weeks, months, even years at a time.

Symptoms include (but are not limited to):
·        Post exertion fatigue (can be caused by physical, mental or emotional exertion)
·        Muscular and join pain.
·        Muscle weakness
·        Dizziness and imbalance
·        Ringing in the ears
·        Chemical and scent sensitivities/intolerances
·        Sensitivity to light, touch, and/or sound
·        Food intolerances, allergies and gut dysfunctions
·        ‘Brain fog’ (an inability to process information or think properly)
·        Recurrent ‘flu-like’ symptoms (including sore throat, swollen glands, aching, feeling as if you have a fever)
·        Irregular body temperature
·        Cold extremities/poor circulation
·        Sensitivity to heat or cold
·        Insomnia or hypersomnia
·        Nausea
·        Eczema or Psoriasis

Personally, my main symptoms, other than the extreme exhaustion, include my entire body constantly aching, bad headaches, and sharp or intense pain in varying parts of my body. Some days I experience significant muscular weakness, which can make even walking or picking up a light weight difficult. I experience dizziness and imbalance at times. I am on a strict and restrictive diet, but still experience pain, stomach distention, frequent urination and other uncomfortable and unpleasant symptoms as a result of my stomach not being able to handle any and all food and drink that I consume. I cannot wear even ‘natural’ makeup without experiencing hay fever like symptoms. Scented candles, most types of hand wash, perfume, normal laundry powder and cleaning chemicals are a no go. My hands and feet are almost always cold and have a tendency to go a rather scary shade of purple. I often experience strong waves of nausea, especially when I have exerted myself too much. I am sensitive to light, particularly fluorescent lighting, which increases my fatigue, causes me to feel light headed and unable to focus either visually or mentally. I experience evidence of eczema or psoriasis and, at times, flu-like symptoms. And then there is brain fog, which has become a frustrating and sometimes embarrassing part of life.

“But you don’t look sick!”
Just because someone with ME/CFS looks healthy, doesn’t mean that they are. You might see someone smiling and chatting to others at a social gathering or at their place of study or work and think, “they don’t look sick!” But what you don’t see is the day/s in bed before to save their energy for just one or two hours at the party. You don’t see the pain, exhaustion and nausea they experience for hours or days afterwards. You don’t see the struggle behind that smile, the determination to push through despite immense fatigue and pain.

“It’s not like you have [insert other illness here]…”
ME/CFS is often compared to other illnesses and brushed off as an insignificant, or minor illness. This is extremely hurtful and is neither accurate nor helpful.

Compassion does not happen when you compare.

This article has been in large part about the ‘negatives’ of living with ME/CFS. That is because it is important for people to really understand the reality and severity of this illness. One of the greatest difficulties of having this illness is not feeling understood, to experience such a disabling illness, but not have that experience validated and understood, either by the general public or by much of the medical profession.

However, while I do get ‘down’ at times, get bored of laying in bed, get frustrated and upset that I can’t just do the things that I want to do, I choose to try to focus primarily on what I can do, rather than what I can’t. It is important for me to understand the limitations I face with this illness, and have compassion for myself in that, but to celebrate and be grateful for what I still have to offer.

Natasha x

For further information, take a look at these links:
·        www.mecfs.org.au

·        http://youtu.be/_ZgNR6KrQFo

·        http://youtu.be/IOflARSgNnE

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