Hi. I’m Jake, I’m 30 years old, and I suffer with ME/CFS, and some other things…
Now that’s out of the way: I wanted to take a moment to write about what it’s like me living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS) and its friends – fibromyalgia, and hypermobility. This isn’t just about the physical symptoms; it’s about the daily emotional and social experiences that come with them.
Let’s start with a brief understanding of these conditions:
• M.E./CFS is more than tiredness; it’s a deep, unrelenting fatigue that no amount of sleep can alleviate, accompanied by pain, headaches, and brain fog.
• Fibromyalgia adds widespread pain and tenderness, making daily activities a real challenge.
• Hypermobility means dealing with joints that extend too far, causing pain and frequent injuries.
One of the toughest parts of these conditions is the constant need to balance what I want to do with what my body can manage. It’s about trying to be more active, help more, and be part of life’s little moments. But often, it involves oversleeping, or staying in bed longer than I wish, not out of choice, but necessity.
I’ve had to cancel plans last-minute more times than I’d like to admit due to sudden symptom flare-ups. It’s heart-breaking and frustrating, both for me and for those I have plans with. The guilt of letting others down is often as horrible as the physical symptoms themselves.
Despite the overwhelming fatigue that defines CFS, falling and staying asleep can be a struggle, leading to a sleep schedule that might seem irregular or unconventional to others. The body’s inability to engage in restful, restorative sleep exacerbates the daily exhaustion, creating a vicious cycle of tiredness and sleeplessness. This erratic sleep pattern, which might look disordered from the outside, is actually the body’s way of coping with the symptoms of CFS. It’s the best possible adaptation to a difficult situation, where traditional sleep routines may no longer apply and where every hour of rest can make a difference in managing the condition’s demands. Understanding this aspect of CFS is crucial in recognizing the complexity of the condition and the unique challenges faced by those living with it.
Another significant challenge that often goes unnoticed with M.E./CFS and its related conditions is the risk of depression due to the isolation these conditions can bring. Maintaining mental health while managing a chronic illness is a delicate challenge. The reality of it often involves prolonged periods of loneliness, not by choice, but as a consequence of the energy demands and symptom management these conditions require.
Finding comfort and distraction in activities like computer games has been a saviour. Gaming allows me to escape into a world where my physical limitations don’t define me. It’s an activity that I can manage without exacerbating my symptoms, and it helps take my mind off the constant discomfort, pain, fatigue, and guilt that I feel every day.
Spending time with family and friends is also something I treasure deeply. But even watching a film or having a long chat can be a marathon effort and makes it harder to ignore the pain and fatigue I feel. Every social interaction is a balance between enjoying the company and managing the potential aftermath. My partner often takes on a disproportionate share of responsibilities. It’s deeply frustrating and disheartening for me to see them shoulder so much due to my condition. I honestly wish to contribute more around the house, to be more of a partner in the true sense of the word. However, the stark reality is that engaging in even basic household tasks can lead to significant energy dips, exacerbating my symptoms and potentially jeopardising my ability to work. This limitation creates a difficult balancing act; wanting to do more but understanding that doing so could compromise my already fragile health. It’s a constant struggle between the desire to contribute and the necessity to manage my energy for essential activities. My partner’s understanding and support are invaluable, yet the guilt and helplessness of not being able to contribute equally remain soul destroying.
The way we talk about these experiences matters too. Comments like “Look who’s finally awake” can sting, even when not meant with malice. They subtly imply a choice or laziness, which couldn’t be further from the truth. On the other hand, hearing “Glad to see you’re feeling a little better” can be uplifting. It acknowledges the struggle and shows care and understanding, even if my illness causes us to miss something we planned. It’s about feeling seen and supported in the struggle, not just for the inconvenience it might cause.
This blog isn’t for pity, or to make you feel sorry for me, but rather an insight into a life that’s a bit different. You could pass by people with invisible conditions every day and never understand their struggle. You might even judge someone without knowing how hard they worked to get out of the house. For those who extend empathy, patience, and understanding, your support is more valuable than words can express. It’s your kindness that makes the tough days a little easier and brings some light into the more challenging aspects of living with these conditions.
I’ll be posting updates as and when I am able, highlighting the best and worst of living with these conditions. Hopefully sharing laughs, light, and resiliance along the way. I hope you’ll join me as I go through this journey of recovery and resiliance.
