Navigating Life with Chronic Fatigue Syndrome: My Personal Journey

 So, in this blog I generally like to try to stick to the topic of Autism, how it affects me, tips and tricks and sometimes we go into other topics surrounding neurodiversity. But today is another one of those days where I talk about my personal life, my struggles, successes and failures. 

Today, I want to dive into a topic that hits close to home for me: Chronic Fatigue Syndrome (CFS). Living with this condition can be incredibly challenging, both physically and emotionally. As someone who battles CFS every day, I want to share my experiences, shed light on the struggles we face, and provide insights into living a fulfilling life despite the hurdles. So, grab a cosy seat, take a deep breath, and let's embark on this journey together.

The Invisible Battle: Unveiling the Mysteries of CFS

Living with an invisible illness like CFS is incredibly isolating for many of us who struggle on a daily basis. I think it is made harder with the fact that on the outside I look fine, I can walk for the most part, I can smile, sing, and go about my daily life without any obvious evidence there is something "wrong" with me. If you saw me, walking on the street, mixing into the crowd, you wouldn't see a crippled man, a man fighting a battle with his own body. You would simply see another man going about his business.

But what you may not see is the constant fatigue, cognitive difficulties, and physical limitations I face. You don't see the 10-plus hours in bed a night, the massive number of pills I need to take to manage my condition, you don't get to see the nights I cry to myself because I wish it would all go away. In my case, I need to take to keep myself level-headed. You don't even get to see the self-harm scars, the times when I would hurt myself just to feel something other than fatigue. You don't see the times I tried to take my own life because I didn't think I was strong enough. 

The Daily Struggle: Navigating Life with Limited Energy

Oh, the relentless fatigue! I can't even begin to explain to you how I feel on a regular basis. The hardest part is the fact that no matter how much planning, no matter how much I try to work out how much I can do, the condition is unpredictable. From one day to the next, from one hour to the next. Today I planned to stream twice, but the second stream didn't happen. Because after all was said and done, I just could not face being on camera for a second time. 

One thing that you get told from the very start is the need to pace yourself, the need to conserve energy, and the need to leave some spoons in the bank. But that isn't always possible. There are days when either I need or want to do more than I ideally should. No matter if I'm wanting to go for a night out, or if I need to get on top of housework. There are just times when more is needed than I have to give. And those days are the worst. 

There are so many things that I want to go on to do, so many things that I would love to accomplish, but I fear that I'm going to be limited for the rest of my life. No matter my drive, no matter my hopes and dreams, I'm going to struggle to achieve all that I could. This already happened to me in regard to work. I can't work, not because I am unable, but because it leaves me with so little energy that I can not live a comfortable life outside of work. 

The Emotional Rollercoaster: Dealing with Frustration and Uncertainty

Living with CFS is not just physically draining; it also takes an immense toll on mental and emotional well-being. There are some very strong feelings that come with the condition. No matter how affected someone is by the condition we are faced with the same questions. In many ways, it is not unlike the process of grieving the loss of a loved one. But in this case, I'm grieving the loss of the life that I could have had if it wasn't for the condition. 

The truth is, I knew something was wrong long before I got a diagnosis. Long before the doctors would listen to me, I knew that something was changing. It didn't happen all at once. But over the course of around 18 months, I went from a healthy adult, who was cycling well into the thripple digit miles per week to someone who struggled to even stand for long periods of time. To someone who struggled to walk freely unaided. It was such a subtle shift that I didn't even know it was happening at the time. 

The Struggles

We will talk more about the struggles of getting a diagnosis in the next section, but for now, we will just say that it is a difficult long process. But even once that process is done, what are we left with?  We have a condition that is life-limiting, painful, and exhausting, a condition that has no form of treatment. The only treatment available for it is to simply do less with our lives. To simply change the entire way we live our life, what we do, and how we spend our time. 

Then comes the waves of self-hatred, self-pity, the questions, why me? What did I do to deserve this? Why do I have to live my life like this? And if we are particularly unlucky we will have family members who don't believe us, who don't understand the condition. We get called lazy, useless, and a drain on society. Some people seem to think that if they demean us enough that we will somehow be cured of our condition. But, that isn't the way any of this works.

Navigating the Medical Maze: Seeking Diagnosis and Treatment

One of the greatest struggles for individuals with CFS is the journey to diagnosis and finding effective treatment options. The truth for me is despite the fact that I became highly active in my teen years, constant chronic pain, a bewildering deep-seated level of constant exhaustion and a battle with confusion and a range of other symptoms plagued much of my late childhood and teenage years. I got my diagnosis at the age of 23 despite struggling with the symptoms for well over half my life. 

Some of my earliest memories are of me telling my dad that I was in pain or that I didn't want to go for a walk because I was tired. He would respond in his usual dismissive tone calling me fat, lazy, bone-idle, mard and any other insult he could think of at the time. I feel this is something that I will never forget and is one reason why I struggle to have a good relationship with my dad even to this day. 

As a quick side note my dad has not changed, he still frequently insults me regarding a number of issues I face, usually around my weight or lack of physical activity but also due to the fact I don't and can't work and the fact that I am on state benefits. My mum on the other hand, despite the fact we have many disagreements, despite the fact that we argue often is now and has always been nothing other than supportive and understanding and for that, I can not thank her enough. 

Misconceptions

This leads well into the next thing I want to talk about, and that is the misconceptions that many people have about me and other people with my condition. We do not have bruises, we don't have casts and often don't have wheelchairs or anything of the like. It can cause issues, like using disabled parking, adapting bathrooms out in public and generally just getting mean and untrue comments from people as wide-ranging as family members to friends to random members of the public who think their opinion is needed. 

Even medical professionals can fall into that trap, it is really challenging to find a doctor that not only believes in the condition but also who is willing to try to understand and find effective forms of treatment. I've had everyone from psychiatrists to physiotherapists tell me that I need to do more. But it is well-known and widely accepted that the best way to deal with and live with the condition is to pace yourself, take frequent breaks, and learn to live a more sedentary lifestyle. 

Building a Supportive Network: The Power of Connection

Having a strong support system is crucial for anyone living with CFS. We get told this time and time again. By our friends, by our families, by our doctors, but it feels like for me at least. None of these people telling me to build a support network want to be in my support network. So the question has to be asked, who exactly are you supposed to include. 

I feel this is the hardest part of dealing with this god-awful condition, you see, there is no way for you to know what it is like to have this condition. You can read about it, study it, and even go as far as to get a medical degree. But, even after all that if you are not the person dealing with the condition there is no way for you to know what it is like for those of us who deal with it on a daily basis. 

That's the real hard part about having this condition, it is so very isolating, it is so very lonesome. No matter how much we try to interact with "normal" people, no matter how much we push ourselves to be like a "normal" person. We are not normal people, we can not do what normal people do, no matter how much we try to push ourselves to be like everyone else. 

The Struggle Continues

So that then leads to the next thought, there are only a small number of people who can truly understand. And, those are other people who struggle with the same condition. But, the problem is, how does one offer support to another while also going through the same battle, with the same struggles. But it is also important to set boundaries, to make it clear to others when your energy is low, your body is unwilling and your mind is unclear.

It is one thing to take care of oneself, but it is entirely a different thing to take care of another while facing struggles that would cripple the average person. But yet, we do it. Through in-person groups, phone calls and messages and even as far as creating and maintaining vast networks of support through social media. 

We do it all, not always because we have the energy to spare, not always because we want to. But because we know what it is like to struggle through this condition on our own and wish to take away that difficulty from others.  Together, we can find solace, share experiences, and uplift each other along the journey.

Final Thoughts

Living with Chronic Fatigue Syndrome is a battle that often goes unnoticed by the outside world. It's a journey filled with ups and downs, triumphs and setbacks. By sharing my personal experiences and shedding light on the struggles of CFS, I hope to create a space of empathy, understanding, and support. Whether you are personally affected by CFS or know someone who is, remember that compassion and awareness can make a world of difference. Together, we can strive for a more inclusive and supportive society, where the voices of those living with chronic illnesses are heard and valued.

Remember, you are not alone in this journey. Let's walk hand in hand, spreading awareness, and supporting each other every step of the way. Together, we are stronger.

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