Today, today, today..
I’m sat here at 9.39pm to be exact starting to feel unbelievably tired and sleepy. But, I promised myself I would keep on track with my blog. To keep my mind sane. To keep my emotions controlled.
I definitely feel better from writing all my thoughts and feelings down, it helps.
Since my diagnosis in July, my mind has been puzzled, muddled up like a proper jigsaw puzzle and I’m trying to find the pieces to put myself back together, how do I do that? Goodness knows. I am trying my best to grieve my old self, and I’ve never ever thought it would be so hard to do so. How can I go from a manageable level of ME to this, my life is at a halt.
When I was 13 years old, I started to notice that I felt a lot more “tired” I’d come home from school and just nap. Nap until either my Mum came home and it was time for dinner or if my little brother came bursting into my room asking for help or just to annoy me. Anyway, it felt manageable, it felt like it was normal because c’mon, I was a 13 year old who probably lacked the correct amount of sleep and just needed a “pick me up” nap to feel slightly better.
This got progressively worse as a teenager, feels unbelievably tired, but again.. we put all this down to hormones. I didn’t know what “chronic fatigue” was.. no one did. It was never spoken about. When I was a teenager I unfortunately got depressed, very. I was a bit of a loner in school, had a handful of good friends and that was it. I thrived on the internet, it was my safe space. I had SO many friends on there, some which luckily I’m still in contact with today. And they were the best. They helped me.
Working my way through school was crappy. School sucked. I managed to move out at 15 and started living with a boyfriend, life was ok. I missed my family, but I found the family dynamic so hard. Got my first proper job at 16 and worked at a pot wash in a cafe, my ex boyfriends family ran it at the time. Nightmare. The depression got worse; the thought of working with them, it was hard, note to self: don’t ever work with family.
The tiredness got worse and worse too. Still, no matter how many times I told people it was a simple “just get more sleep” “you’re young you can cope” oh well, yeah, guess so. Finally got myself a great job at a company which my mum also works at.. oh the relief was incredible. Doing my own thing. The tiredness got worse and worse. Again.
Moving into my own home: wow. A huge step, and I loved my first home, so much. It was so cosy, a one bedroom home with a cute little garden (no grass, no maintenance loved it) little kitchen, in an small village. The depression and exhaustion is now at its worst. I was trapped. I was trapped with an manipulative boyfriend who thought exercise was the answer, I can tell you now, no it was not. Lockdown was my horror movie, I was stuck in that house 24/7 with the ex. I had to do this “routine” of his to get through each day. Exercise, walk, eat, sleep. If you have ME/CFS then you will understand this was unbearable. I’m surprised I survived.
Left that relationship and met my dream guy. Literally. Skip forward to 6 months ago, I had my gorgeous son. Oh and I love him so incredibly much. He’s everything, unless you are a mother there are just no words to explain your love for your child. He is my reason. My ME has declined so much since having my boy. Having him was a hard decision but the best. And now, I’m trying to figure out my life.
Some days are SO hard. I can’t even put into words, I feel heavy, sad, I feel like my body is made of concrete and even just to move an inch.. it takes all my energy. Walking up the stairs, reaching over to get a drink, going to the toilet.. it’s all so hard.
Living with ME seems like hell, a life long punishment with no cure, grieving the old you who could do all these things at ease. Although I used to feel exhausted, it could still manage my life, walk my dog, socialise with friends, go on holiday, now that seems so far out my reach. The thought of living with this everyday is so scary. How do I explain to my family that’s the case too? When people respond “you’ve got to be positive” “things will get better” but that’s the thing.. they won’t. I can learn to manage what energy I do have, but I will never gain more. People will never understand why some days I can’t be social or even do simple things. It’s so lonely.
I’m trying to learn this grievance process of myself, someone who is still alive, but not the same person anymore. Knowing I cannot every be my old self. Where do I even start?
My journey with ME 