I never thought I would be experiencing this day, a day which marks 5 years since I first got ill with Chronic Fatigue Syndrome. An invisible illness that many suffer from. I was 13 years old when this illness hit me, an illness I had never heard of, but would become very familiar with. I was given the information that I would be recovered by 5 years, back to being healthy and having no more limitations or setbacks, but here we are. 5 years on and a lot has changed, but yet again, it hasn't really. My health has had its serious ups and downs, Year 11 being the worst where school was non-existent and my life was lived mainly at home on the sofa while I pushed myself to get my GCSEs. For Sixth Form my health improved and I was thankful for those years where everything was pretty much smooth sailing, for the most part, I even got into University. I moved to Norwich to study at UEA.. and then left in January as it was all too much. So even though I have grown while being ill, I still have the same thing to deal with. I can't remember what it feels like to be well, what it felt like before I got this illness. We all have things that stop us and cause us struggles, and for me and many others around the world, it's called Chronic Fatigue Syndrome.
To give you a little insight into what CFS/ME is and how it affects me, my symptoms include; fatigue, tiredness, headaches, dizziness, being lightheaded and faint, muscle and joint pains, intolerance to light and sound, nausea, brain fog, and no doubt there is more that I have forgotten because all of this is just my reality now. Those symptoms don't even include the mental side to it either. It brings anxiety and depression, the feeling of constant loneliness and isolation, and for many days I feel like a burden to those that I know and care about, who put so much energy and love into caring for me.
I will say that I have made myself proud in these last 5 years like I never thought I could. I like to stand back and actually think of all I have achieved, and I am pretty pleased with myself. Most days these achievements take the form of getting out of bed and getting dressed, but there has been others like completing my studies and exams, and passing my driving test. These things mean so much to me as the everyday tasks are a struggle and a half most of the time. The best way I can explain how this illness affects my body is by saying it takes me twice as much energy to do something but my body only creates half the normal amount of energy. I remember my doctor at Great Ormand Street Hospital said "it's like having flu, not sleeping for 3 days, and still going about your daily activities." There has been days throughout my 5 years, and I know there will be more in the future, where I feel annoyed and upset and angry and ask myself "why me?", but learning to not fight the diagnosis was the best thing I ever done.
So why am I writing this blogpost? In all honesty there's no real reason, but yet there's a million of them. I aim to do a more detailed and powerful post in the future when, ironically, I'm not so tired or busy. I want to educate, I want to inform people on this illness and give people an idea of the reality that so many people face. And sadly, this illness is highly under-researched and many are "nonbelievers" and are of the opinion that people are faking it. There is nothing I want more than to do a proper post, one that will raise the right awareness. But for now this is all. Happy 5 years to me.
Much Love,
Jessica Rose (The CFS Princess) ♡
(PS - Every year on my CFS anniversary we make a cake, it makes everything better right?)
