My Severe ME Story

This is my severe ME story.

ME Awareness 2018
Virtual participation in ME Awareness Day 2018

 

What was your life like before you got sick?

I was a full-time practising accountant (Associate CPA) and undertaking post graduate study called CPA Program in order to advance to CPA status. I was ambitious and determined.

I had a house with a gorgeous view from the veranda. I enjoyed driving my new car, walking dogs along nice streets, parks and beaches. I liked going to shopping centre on weekend and have good coffee in nice café, but it became impossible before the severe onset of ME.

Life wasn’t easy for me. I didn’t have family support, so I worked really hard and made sacrifices to give myself education and career. I didn’t have joy in life, but hoping to have proper holiday once I achieved the goal to become a CPA.

I was married, too.

How did you get sick initially with ME?

I believe I had mild ME since I was a child that was probably triggered by measles that almost killed me when I was an infant/toddler. From what I saw, I believe my family carried ME gene. However, I was functioning enough to pursue education and career.

Things changed dramatically when I was persuaded by in-laws to see their GP in 2002. The GP said “CFS doesn’t exist” and misdiagnosed me with depression. Initially, I was happy with the diagnosis because the GP assured that I would be better in 2 years by taking medication. I believed his explanation that depression can cause fatigue.

Those days, my idea of sickness was simple. When we get sick, we get better or die. And doctors know everything.

I followed his instruction strictly; took medication without missing and increased exercise and activities while I was already having busy life. The psychiatrist he referred me instructed to get up and be active when I feel fatigued as well as the exercise.

Despite of the assurance, my health deteriorated rapidly. Psychiatrist discharged me because I was mentally doing well. GP kept increasing the antidepressant dose each time I saw him. He referred me to another psychiatrist who really didn’t know what to do with me.

I started question about the diagnosis. I read articles and joined a newly established forum by Beyond Blue. The description of depression doesn’t fit the symptoms I was experiencing and I sensed the fellow forum members felt the same.

Being frustrated and confused, I asked the GP if it could be MS. The description of symptoms fits much better than depression. He refused to consider any possibility that I wasn’t suffering from depression and his attitude was getting hostile towards me.

In the end, he accused me I wasn’t taking medication and said he couldn’t help me anymore.

Instead of getting better, I was bedbound with dramatically increased neurological symptoms. It felt like I just became a victim of hit and run.

How affected by ME are you now?

I am diagnosed with severe ME-ICC. And, I feel it is the right diagnosis.

What are your limitations and what are you capable of doing now?

I’m mainly bedbound and struggling to keep up with basic self-care and housekeeping chores. I cannot communicate over the phone (my voice is too weak to be heard and my brain crashes by trying to spell out my name, address and/or phone number) and this makes getting help very difficult, if not impossible.

I can only go out for essential appointments with my boyfriend’s assistance who knows my symptoms well. I could crash/collapse (I don’t know the right medical term) in a waiting room, that means I need to lie down in quiet & dark place to recover. He can tell when I’m about to crush. While I’m crashed, I cannot move nor communicate. I’m very lucky I have a boyfriend who knows what I need and negotiate to get me to the place to recover. Often, staff wouldn’t take serious about our request for the place to lie down until they see me crashed and my boyfriend had to carry me.

By the end of the short outing, he often helps me to shift from powerchair to car seat because my muscles lost strength with extreme exhaustion. Then, I have a prolonged Post Exertional Neuroimmune Exhaustion (PENE) from the efforts of getting ready for the outing and the actual outing.

My sleep cycle is reversed. I cannot tolerate sleep medication. I tried sleep hygiene, but it actually made symptoms worse and reduced my functioning hour. So, I sleep with the flow to have the maximum functioning time possible, and my endocrinologist agrees with my strategy. I have to seize the moment when I get the function to get things done regardless of day or night.

I can use laptop in bed. I participate in gentle social networking. Very occasionally, I use functioning time for the new found hobby.

How have you learned to adapt to life with ME?

My life with ME has had three different phases; crisis, isolation and in relationship.

Adopting to life with ME is not straightforward. It’s a long term rollercoaster ride that involves grieving and acceptance in the end. Learning about what I’m dealing with is essential. We need to be our own expert. I learnt hard way that doctors do not know everything. And I felt empowered when I learnt I have the right to refuse treatment.

I believe having friends with people with similar severity level would help with the process of grieving and acceptance.

Having said that, I still want to get better.

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These are a little more detail of each phase I’ve been through.

Crisis period… Shock, disbelief, uncertainty and desperation are the words to describe it. There was nothing for me to understand what was happening and hugely in the panic at the edge of cliff seeing my life is taking the plunge into the deep dark ocean.

At this time, there was no adaptation. I face the situation and just reacted.

Help seemed non-existent when you cannot get out of bed. Nobody got the glimpse of my plea that I was sick in bed without anyone to help me. I often got the response that they would help once I get to their office, despite of explaining I’m housebound and mostly bedridden and had nobody to help me. There were a few people who had compassion. One little help lead to another little one. In the process, I had people visited me to assess eligibility for food voucher who was devastated to see how I existed. Eventually I got a meaningful help. Kind people and organisation got me out from the circumstances where I was just left to die by my husband.

Then, isolation period started. It was realisation and trauma ridden struggle.

Once the crisis support workers at the women’s refuge helped me to secure the rental property for me and my dogs, all support service stopped. This was the time before social network and supermarket home deliveries. I was in the new place I never knew without knowing anyone and any places. Having no support, I had to push myself to get things done. I probably had period of adrenaline rush until I completely crashed again. Things were getting harder and harder. I started experiencing transient paralysis with PENE.

I didn’t know how serious CFS could be. (That time, I only had blunt diagnosis of CFS by a rheumatologist who prescribed me GET and antidepressant that I couldn’t tolerate anymore when I was already housebound and bedridden. I felt I was a failure for not being able to follow the instruction to “get better”.)

Around 2008, blogging took off. People with ME/CFS shared information, advice and personal experiences. It was a form of social networking, rather than publishing. It created a space where we belong.

I was educated about CFS and ME and importance of pacing. I was traumatised when I learnt antidepressants and exercise I undertook were the reason my health deteriorated so badly and I was harmed to the point I won’t be able to gain the health and life I had. Reality check I didn’t want… At the same time, I learnt about grieving and how normal my emotions were for what I had to go through. I also learnt about trauma and its effect to my mental status.

Despite of the reality, accepting I have severe ME was not easy at the beginning. I assume it is something like cancer diagnosis, you are in denial and disbelief that it couldn’t happen to you. Acceptance for myself is one thing, and acceptance from others is completely different story.

We tried to spread awareness. Although, in my opinion, it didn’t spread outside of ME/CFS community. Nevertheless, it created the collective project and purpose for us.

I found writing therapeutic. Two kind people reached out to me became my close friends. I lost some friends with ME/CFS over dispute on controversial treatments. My close friends were there for me during my darkest hours. They creatively provided me with real practical support I desperately needed. They are still my precious friends today.

Other things kept me going were my dogs and hope to get better one day.

One of my dogs died. My hope for getting better wasn’t going anywhere. The harder I tried, the worse my situation became.

I guess learning about what I was facing and searching for any information that would bring me any form of help gave me purpose. My dogs also provided the purpose to keep hanging in there.

Everything was just too hard. I knew I had to pace, but I had to push myself to get basic chores done whenever I had a little energy. I cried while I was paralysed when I had things to do, but my body just cannot move.

These days, I constantly told myself; “Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” Mary Anne Radmacher

𝗨𝗻𝗶𝘁𝗲𝗱 𝘄𝗲 𝘀𝘁𝗮𝗻𝗱 𝗳𝗼𝗿 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗠𝗘/𝗖𝗙𝗦 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗗𝗮𝘆
My contribution to NCNED’s 2020 International ME Awareness collage. https://www.facebook.com/National-Centre-for-Neuroimmunology-and-Emerging-Diseases-NCNED-111905763774120/

I noticed demeanour of people changed and was confused. Maybe, it was there all the time, but I didn’t notice it in able bodied life. I now know that I lost respect and gained judgement. Some people were mean and some treated me with contempt in their eyes or as if I’m a child with development issue or I cannot understand English. I’m still telling myself it is not because of me, but because of ME.

I was frozen in time with frustration and despair. Yet, when you look up, significant amount of time has passed and everybody else had moved on with their lives while I have not achieved anything. I started question myself how long more could I exist like this…

Then, I heard a news that a research team in my area is looking for volunteers for biomedical research into CFS/ME. They had information session at local hospital. I had to be there. My compassionate GP at the time authorised medical transport for me to get to the information session at the hospital.

At the first blood collection at the hospital, I crashed in the ambulance on the way (because they didn’t let me lie down). I was laying in the bed at hospital transit centre where patients can wait for ambulance transport in bed or reclining chair with medical supervisors on duty.

A friendly researcher came to the bed side and chat with me while my blood was drawn. That moment, I felt my life will be okay.

Since then, they moved to a new research institution that gave them larger lab and access to hospital bed at a brand new university hospital and started severe CFS/ME research. Researchers and a GP lecturer visited me to my home. My hope was utterly depended on them.

A little step forward, then a little step back. Sometimes, I got traumatised by medical staff, from which left deep scar in my heart. My situation wasn’t really improving.
“How long more could I keep existing like this?” was constant and it was getting louder and louder.

Then, a kind man who has been delivering grocery to my place offered to take me out for birthday. I gave him a brief idea how taking me out would be like. He didn’t mind. He had worked as a Wardman in hospitals, so he knew how to handle wheelchair and wouldn’t get awkward with sick and disabled people.

Surprisingly and unexpectantly relationship started.

Any relationship has up and down. Over the time, we have figured out how to keep relationship our way. Just like any relationship, we have good times and bad times. With my severe ME, there are unique challenges we have to face.

My optimism was challenged by the realisation of the base of his understanding of illnesses and disabilities are from hospital time. There was a time he doubted me. However, he has learnt my illness and is now my great support person and my advocate. The process made our trust stronger.

I’m grateful that I met a person with integrity who loves me and fulfilled the missing pieces of Maslow’s Hierarchy of Needs.

What support have you had financially?

I am lucky to receive Disability Support Pension. I have a small savings that is getting smaller and smaller from paying medical bills and top up payments on living expenses. During my isolation time, my kind friends helped me to pay for ongoing housekeeping services and little treats.

Portable Power Chair
My boyfriend bought this old portable power chair for me. It has made my outing experience less challenging.

With my boyfriend’s help, and to my surprise, I just got registered with Queensland Community Support Scheme (QCSS), and had my first domestic assistant and lawnmowing done with government subsidies.

QCSS is focused on illness rather than disability. I think their purpose is to help reduce burden of everyday life with chronic illness to keep us away from hospital or nursing home, rather than expecting us to be productive. Unlike NDIS, there is a co-payment for the service. Since I can only cope with less frequent visits, I can afford the co-payment. It still helps a lot and better than nothing. Interesting feature they have is that they will check me in case of natural disaster.

I must say little treats every now and then from my boyfriend is a great cheer me up for someone with very tight budget.

What do your family and friends know about ME? How understanding are they?

I don’t have family. I don’t see friends. Only person I see is my boyfriend, who is a great support person. (I don’t use the word “carer” because it’s a romance destroying term…)

I’ve never met my close friends with ME, but they have been my rock, especially during the very dark time. It is our dream that one day we get well enough (or someone invent magic flying carpet) to be able to meet in person. *keeping fingers crossed*

Although isolation prevented me from getting the necessary help and support, it can be a blessing because I didn’t have to deal with stigma, disbelief, insults, abuse and etc from family and friends.

I met nice people during my severe ME time, but I feel they just didn’t know what to do. They are usually very busy with their own lives. I learnt not to get upset when they tell me they were going to come and visit me, which I know from experience that would never happen. I’m still independent in spirit and do not want to be burden to anyone. It is still much nicer to see people with good intention, rather than with contempt.

Sometimes I’m told “there are people worse off than me.” I agree and empathise. Some tells me so in order to cheer me up. At the same time, those words hurt me very much. With that short sentence, my suffering, struggle and hope were perfectly dismissed.

What support do you want and need?

In micro level, I need financial and practical support for everyday life. Then, I need an easy access to those support. I cannot go through complicated, tricky and onerous process to prove my illness and disability, especially when nobody will prepare to believe me. (I’m still not comfortable that disability and chronic illness are put in the same basket, while in my opinion, they have different challenges and support needs.) Mentally and emotionally, it is such a cruel process because we must focus on our limitations and negativities, while we really need to focus on what we have and what we can in order to keep hanging in there. It is one of the best ways to destroy self-esteem.

It is energy consuming and exhausting to explain about severe ME over and over to deaf ears, then heartbreaking to see the information I provided with efforts and sacrifices were completely disregarded. And, it is exhausting and frustrating to see over and over that two different medical conditions of Chronic Fatigue and Chronic Fatigue Syndrome are talked together by doctors and supposedly educational article by media as if they are the same condition.

We need effective way to make people understand what it is like to live with severe ME. I just don’t know how.

In macro level, I want to see “official” ME Specialist created in Australia. With Australia’s healthcare system, GP’s role for chronic illness is to triage and care taking. It is important to educate GPs, but GP has limitations based on their assigned role in the system.

While ME remains as an orphan disease and specialist orphan, our quality of life remains close to non existent. At specialist level, research finding can be implemented into clinical care. Specialist can use discretion how to treat patients and educate and give instruction to GP how to look after us. Clinical trial-and-error or experimental treatment can happen under discretion of specialist. Specialists sign legal and government forms for us to access appropriate support. And having ME Specialist, many stigma and misunderstandings about ME will be significantly reduced.

There are other specialists, but none of established specialist has systemic understanding of ME. They only look at the symptom(s) in their specialist field, and probably just scratch their head… They certainly do not have obligation to keep up with ME knowledge.

I’m hoping to start conversation about “official” ME Specialist and quietly searching for people/organisations who can make this dream come true.

What are you hoping the future holds for you and ME?

After going through rollercoaster ride of hope and despair, I need to be realistic and courageous about hope. I’m getting older, I may not be here to see it when my hopes come true.

Throughout the severe ME time, everything about my life has been ME. I would like to take time off and start enjoying life a little, if it’s possible.

Comparing to 10 years ago, more biomedical researches in ME and united ME advocacy are happening. I hope there will be much more meaningful research for ME be conducted and their finding be implemented into clinical care without delay.

It would be nice if uniform knowledge and prevention of ME be demonstrated at GP consultation and be referred to ME Specialist for further assessment, management and treatment as a standard protocol like many other chronic illnesses. I’m grateful that Emerge Australia has finally developed a free GP education that will give Continuing Professional Development (CPD) points.

I sincerely hope that people become ill with ME today won’t have to go through the trauma and despair that many of us had to go through.

Do you feel there is any stigma attached to ME? How has that impacted you?

Absolutely!

Stigma is not unique to ME, though. Stigma is stereotyping/profiling cooked in the oven of fear and uncomfortableness. It happens to anyone based on health issue, disability, education, race, religion, culture, personality, colour of hair, gender or sexual orientation, where you live, where you from, who you associate with, and etc. etc. Stigma also happens to medical and healthcare practitioners who treat us with respect and knowledge.

I feel we need to replace the word stigma with medical inequality to address the issue effectively.

 

2 thoughts on “My Severe ME Story

  1. Thank you Rachel for telling your story. Sadly, it’s an all too common one, where the medical system fails again and again. I was saved, by never believing in their competence, and was lucky to be referred to a GP who did no harm, and helped in some ways.
    I look back on the bad times, and call it a horror story. Thankfully I can lead an active life again but with many restrictions. It’s a toxic world and I’m always on alert.
    May you find an eventual healing.

    1. Thank you very much for your kind words.

      I am very sorry about your horror story. It’s difficult to say something nice about it, but I’m glad you are still here with us.

      I told my story to initiate a change. My experience and your experience should not be repeated.

      I have published my open letter after this story, and quietly talking with like minded people.
      I hope you are well enough to read it.

      Sincerely

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