After almost four years of struggling with debilitating fatigue and distressing physical symptoms, it has been a relief to have a GP thoroughly investigate my health. It should also be a relief to have all his investigations come back negative. However, it doesn’t feel like a relief. This is because the only option left that explains my fatigue and physical symptoms is a diagnosis of ME/CFS.
How a Diagnosis of ME/CFS is Made
Myalgic Encephalomyelitis, otherwise known as chronic fatigue syndrome, and referred to as ME/CFS, is hard to diagnose. There is currently no disease marker, but there are a number of distinguishing primary and secondary symptoms. These symptoms are listed in the Fukuda criteria and are used to make a diagnosis. However, as there are many other health issues that have similar symptoms, the first step is to rule these out. Only when other conditions are ruled out, can a diagnosis of ME/CFS be made.
My Journey to a Diagnosis of ME/CFS
As I mentioned in my previous blog update, I have now had all of the tests needed to rule out other conditions. All of those tests have come back negative. With all other probable causes ruled out, and with me having all of the symptom markers, it’s clear that I have ME/CFS. My GP has now referred me to our local ME/CFS service, and I am waiting to be contacted.
Prognosis of ME/CFS
It feels shameful to say, that I would rather the tests had come positive than to have a diagnosis of ME/CFS. The reason a diagnosis of ME/CFS feels so devastating is that currently there is no cure. Also, the prognosis of recovery is mixed. Some people do make a full recovery, but others live with cycles of recovery and relapse. The lack of a clearly defined path or outcome, makes this diagnosis feel utterly overwhelming, and distressing.
Symptom Management for ME/CFS
Without a cure, the only treatment for ME/CFS is symptom management. Pacing techniques, for example, can be used to help with energy management and avoid post exertional malaise (PEM). Additionally, managing symptoms can involve taking medication for side effects such as pain. There is also evidence to show nutrition, supplements, and complementary medicine may also be helpful for some people. Counseling or CBT is also often offered, to help manage the impact of this illness. The aim is that by symptom management, the illness becomes manageable allowing people to live their lives.
The Physical and Mental Limitations of ME/CFS
I am still finding it hard to accept just how much my life has changed. Most of my week is spent on my bed, supported by pillows. My life has shrunk to a 4 x 6 ft space that I sleep in, rest on, and eat the majority of my meals in. The other rooms in our flat, (including my awesome new office which I was excited to start filming more content and writing a second book in) might as well be in another country.
Resting is not restful. Sleep is not refreshing. Reading and watching TV is made difficult and often impossible through the thick haze of brain fog. Talking is often painful. Frequently words just disappear completely from my mind, replaced with nonsense words that me and my incredible partner try our best to laugh at.
Coping with Frequent Crashes and Symptom Flares
When I do manage to get outside, I cannot walk for more than 5 meters without my heart rate rocketing. My heart pounds and flutters. Although I know now that my heart is healthy, this is incredibly unnerving to experience.
I’ve found a system for pacing using your heart rate to avoid fatigue crashes. However, this requires me to walk at the pace of a geriatric tortoise.
Even limiting the amount and pace I walk can still cause me to crash. An eleven-minute ‘Fred’ shuffle tortoise walk on Tuesday this week caused me to crash the day after. A crash often involves a 24-hour headache, and muscles that turn to lead. The fatigue in a crash state is so intense I only move from bed to use the toilet. I am completely disabled by ME/CFS. How anyone could ever think that this condition is about just being tired needs to spend a day in the shoes (or bed!) of someone who has it.
Grieving for A Lost Life after Diagnosis of ME/CFS
I am angry, I am frustrated, and I am sad. This feels so incredibly unfair, haven’t I have been through enough! I have worked so hard for the life I have. For the future I made possible for myself through recovery and transition.
These feelings are completely normal when life is drastically changed by a serious event, such as a diagnosis of a long-term disabling condition. To feel my life falling through my fingers like grains of sand is utterly devastating. It is unsurprising that the losses I am experiencing are bringing up the emotions of grief. Denial, frustration, anger, fear, worry. These are normal emotions that I need to acknowledge and process, in order to arrive at acceptance.
Processing The Losses
There is so much loss to process, such as the plans I had, the active life I was living. The loss of my ability to do consistent work is causing financial worries too. I am lucky in that I work from home and what I do is very flexible, but I am having to now turn down so much work. This is not just a financial loss but a huge personal loss because I love what I do. Not being able to create content, to have all these ideas and no energy or ability to make them happen is bringing up so much sorrow.
Then there is the loss of me, of my identity, my sense of self-worth. This diagnosis makes me disabled, which I am resistant to accept because it piles another large dollop of stigma on top of my already highly stigmatized identity. There is much to say on this, so expect some waffle vlogs soon!
Moving Towards Acceptance after Diagnosis of ME/CFS
I do not like having all these difficult feelings. I am a person who likes to look on the positive side, to work with what I can do rather than what I can’t. In managing mental health, recovery from addiction, and gender transition, I have amassed a wealth of resilience and coping tools. It’s not in my makeup to roll over and give up.
But, to move forward, I first have to allow these feelings, as uncomfortable as they might be. It’s not about giving up, or about being negative, it’s healthy to acknowledge these feelings. Only in first allowing myself to grieve for the life I had, will I then be able to let go, accept my diagnosis and move forward into a new way of living.
Thanks for reading folx. I will of course update and share on this grieving process as I move forward. Please do feel free to leave a comment.
Chat soon.
Finn
Hello! My name is Finn and I have a passion for creating honest content, that inspires personal growth and promotes well-being.
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[…] most of my day lying on my bed and unable to do much of anything. Most recently, I have received a diagnosis of ME/CFS. As someone who is very busy and active, my new limitations have, and continue to be, a work […]
First of all, thank you for writing such an article. every word is full of knowledge