Help a loved one to find the
“Sparkle in their spirit” again
My experience living with Myalgic encephalomyelitis/
Chronic Fatigue Syndrome (ME/CFS)
Written by Kristen 31/12/17
For as long as I can remember I was described as the type of person that would light up a room. Even now people say to me “Your always so positive and smiling” well the truth is I’ve just become a really good actress! Over the past few years, I feel like my internal candle has dimmed.
This year I have been diagnosed with CFS (Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Fibromyalgia, underactive Thyroid, bulging disks in my lower spine, Anxiety and Ross River.
I’ve now had 3 of Newcastle’s the leading naturopaths investigate my tests results and be astonished by the fact that I get out of bed and function each day – let alone work part time, be a wife, manage a 3yr old and a household.
“Each day I get myself out of bed hoping that this is the day my Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) will heal and I will start to feel better”.
It’s interesting and frustrating that my fatigue and pain will affect me in so many ways. Many days now I will wake at 6am in so much pain I can’t sleep, some days I will start the day great and crash at 3pm and other days I’m in a state of constant pain and fatigue so severe that I am unable to drive.
It’s always interesting when people ask how are you going? to be honest I want to say:
“I’m sick of putting on a brave face, I want to live a normal life again and I wish I didn’t have to feel like I’m just making it though each day”.
However, I have done so much personal development in the past years that I feel if I try and tell myself and others that I’m ok, and then I will be ok. Sometimes I use this response because it’s easier. I find many people just don’t understand or are too ignorant to even try to understand because they only believe that western mainstream health conditions exist.
One of my biggest struggles is trying to explain to people what it feels like to have all these conditions. Sometimes I wish I had just broken a bone or had a more understood medical condition so others would just cut me some slack. The way I explained to a friend recently is “I feel like I have had a massive night out drinking. It’s like I wake up with the brain fog, dizziness and fatigue that you get from drinking and dancing on the town all night. Then with this hangover you proceed to do an intense gym workout. You ache so much and the fatigue is relentless”. So that’s pretty much how I feel each day, and then some days worse!
How has my diet and social life changed after my Chronic Fatigue Syndrome diagnosis?
Food is one of my favourite things in the world and I was devastated when my health even altered what I consume. My diet is full of greens and seeds, no caffeine, limited sugar and very limited alcohol. I’ve become intolerant to wheat, yeast, egg, dairy and nuts. Even with an intolerance proven through blood tests I am still justifying to others why I can’t eat these foods!
It’s always hard to justify to others that you can’t attend a social function at lunch time – not because your 3-year-old needs to sleep but the 35-year-old adult needs to have her day sleep – it makes me feel like a baby.
The financial and time restraints
I spend approx. $300 per month on supplements, medical testing, prescribed medications, essential oils and medical visits. I would much prefer that this money went on travel or taking my daughter out on a day trip or a family holiday. I have noticed this health expense has become an essential factor in our budget.
I’ve gone to so many extremes to find improvements in my health, at the moment I am considering saving money to do a health retreat in Bali. The practitioner claims he can heal all my conditions, all for about $8000!
“Yes, I’m living with a chronic illness, however I am still grateful for every day of my beautiful life”
Some may read this saying, oh poor girl, she is just depressed – well far from it. I don’t want anyone to feel sorry for me and I am not depressed. I’m just pissed off and over my health being one of my number one priorities. All this aside I still wake up feeling grateful every day for the beautiful family and friends that I have. At least I live in a country where I can get access to healthcare and qualified medical professionals.
I deserve to be on Home and Away!
During my work days and when out in public is where I really should be getting an Oscar. I guess years of addiction to “Home and Away” has paid off. When you look at me most days, I look and act like a normal person. My symptoms and medical results put me in the category that one of my Doctors so professionally put it “A fucking mess”. It’s only my lovely darling husband and daughter that see; the afternoons I am so tired and weak that I need to crawl down the hallway to go to the bathroom, others don’t see the relentless hours I spend in medical appointments or doing my own research, most don’t notice that I get so fatigued that I need to go to my car and sleep in my lunch break just to get through the day, and they defiantly didn’t see the times that I was in so much pain I had to soak in the hot bath – then I was too weak to get myself out of the bath and back to bed.
Along with being an actress I have also become a politician in a way as I am constantly arguing and justifying my actions due to my illness. When people close to me have questioned my health techniques and asked why I take so many tablets and need a sleep during the day I find a different way each time to remind them that I am sick, however it’s getting to the stage that I put my reasons for justification down to ignorance of others and lack of knowledge for conditions such as CFS.
What this neurological disease has taken from me
Yes, it’s been recognized by the World Health Organization as a neurological disease since 1969. Not only have these conditions strongly reduced my social life and relationships they have also taken away an amazing opportunity for my husband and I, it has robbed us of a chance to have another child and a sibling for Bella. Doctors have strongly advised against this as my body just would not cope. I wasn’t sure if I wanted another child until I was advised of this, now it just fills me with guilt and disappointment.
The glorious lessons living with Chronic Fatigue Syndrome – ME/CFS has taught me
I’m so grateful for my husband, daughter, parents, siblings and a few close friends that truly support me emotionally and physically. If it wasn’t for these special people in my life, I may have become bedridden like many of the others that share my diagnosis.
If anyone is reading this with a similar “blind illness” my message to you is hold onto the true friends and family and let go of the others. Keep your mind active in a constructive way, practice mindfulness, meditation and surround yourself with positive people and activities. This lifestyle will have a positive ripple effect on your mental and physical health.
“I’m a warrior with an invisible battle” each day is such a struggle however I’m determined that I will have good health in 2018!
I chose to share these thoughts with you to encourage people to become more understanding of conditions such as mine. Do your own research into how you can support others and be there to sincerely offer help and ways to enrich their lives.
My hope in 2018 is that you can guide those with an invisible illness – whatever it be,
to find the “Sparkle in their Spirit” again.
Written by Kristen on 31/12/17
I wrote this journal on 31/12/17, only today have I decided to share it with the world as it’s time us experiencing this incredibly misunderstood illness speak up for better healthcare and some compassion.
Unfortunately, it’s now 4 years after writing the above and my condition got incredibly more severe. In the coming weeks I am going to share my next blog on “How to keep going when you still can’t find your sparkle” it’s to encourage those with a blind illness to keep going on those days they are starting to lose hope.
Want to learn more about ME/CFS?
I encourage you to learn more so you can better support those of us living with this condition, some of my most valuable resources are
- Emerge Australia
- Mayo Clinic
- Centers for Disease control and prevention
- Watch Unrest documentary on Netflix
