I never thought that I would start writing from my toilet but I’m sure it’s not the worst thing or place I have ended up on a Friday/Saturday night.
I was going to say that tonight has been rough but that would be a lie because the past few weeks that been incredibly tough. From falling over and passing out to arms covered in pinpoint bruising not forgetting the swelling in my mouth, lips as well as tongue. So many of you amazing people have reached out to offer advice but I need to tell you something first, I’m petrified to find out.
Even looking at my calendar scares me as it is filled with appointments to see Drs of various specialities and yes I do keep the more embarrassing things that are going on to myself. Every single time I see a medical professional I fear that it’s going to be a really bad news appointment and with how ill I have been recently I am terrified.
I often wonder if all of my bad health is linked to me being an awful human or if I am just the unluckiest person in the world. If you are thinking to yourself that I am not an awful human I’m sorry to disagree as after all if I was nice then I would be surrounded by people who love me on bad days like this. Instead, I am sitting on my toilet sharing to the internet how lonely and unhappy I am.
I’m having an awful time all night I have been lying next to my Husband crying silently so only the tears fall, the odd sniffing I put down to hay fever. I wish that I could say that this is the first time I have lay in bed silently crying but it is something that happens all the time, more so lately.
I know that I am not alone because I speak to so many sufferers every week who can’t stop feeling like this. Many people think that people who suffer from Myalgic Encephalomyelitis just have depression and they can just snap out of it. Honestly, you could put a naked Tom Cruise in my bed dripping in sweat after hours of steamy sex and a huge engagement ring just waiting on the nightstand in anticipation of the big “yes of course I will marry you Tom Cruise”. I’m sorry I would refuse the proposal and then just roll over and ask him to get me lolly ice from the freezer before he leaves.
I have missed out on so many occasions happy and sad since I have been ill. Missed out on so many opportunities in both my personal and professional life. See you can’t just switch off an illness like ME because the more you can manage the more this illness will make you suffer. I don’t spend every single day lying on my left side with only a white wall to stare at because it is good for my health, it’s because that is the only position I can get comfortable in. I’m sorry scratch that because I don’t even get comfortable, on my left side is the only way I can manage.
With ME you are not in control you have to listen to your body and do what it wants. The pain that I suffer isn’t the sort of pain that you can put to the back of your mind and get on with your day. It’s pain that will stop you in your tracks, take your breath away type of pain. People with ME become specialists in hiding this pain until they have no option but to let go. For me, this is normally in a flood of tears and snotty tissues.
I read about a lady who recently went to a place in Europe that allows people to take back control of lives like ours by choosing when they die. I think about this question a lot.
What do I have to live for? I live every day in my bedroom in absolute silence most of the time, I can’t do any basic life tasks. I can’t clean myself, I can’t feed myself. Every aspect of my life is dictated by this illness. I can’t go out with friends or family, I have missed out on Births, marriages and deaths due to this illness. I even had to miss out on my daughter’s Graduation from University.
Could I miss my Daughters next big life event, No I truly don’t think that I could.
I have thought about Death a lot because I don’t feel like I add anything to anyone’s life. It’s horrible to call My Daughter or My Husband as they always ask in a panicked voice if everything is ok. If they ask that when I call them then does that mean each time they see my number pop up as a call does their heart skip a beat? I can’t go anywhere and I don’t see anyone, no one calls me to see if I am OK. Almost all of my friends have been living without me in their lives for years now with the very few exceptions who still message me to keep in touch.
If I knew that My Daughter was going to be ok and that my death would not cause her any trauma more than the normal loss of losing a parent, then I would lean more towards yes. I know that My Husband would be better off without me in his life as all I do is bring him anxiety and unhappiness. Without me here he could meet someone and have a good life, I see it in his face when we argue, what he feels comes out. You can’t hold back the truth when you argue, the truth always comes out.
I want to do so much more with my life and I still want to achieve so much but I can’t, this illness always wins. I need a win for a change. I just want to feel the slightest bit better instead of being able to count on one hand how many times I have left the house this year.
I vowed to myself when I was diagnosed with this illness that I would do everything that I could to help others and this illness even stops me from doing that.
I want to make a difference, I truly do.
I can’t see a way forward right now everything feels like such a mess. Maybe I am being punished for the wrongs that I have made in my life, maybe I am being punished because I am not a nice person.
I do want my life back, I want to lose weight, I want a career again, and I want happiness in my life but no matter what this illness stops me.
If I am having a good enough day to get a shower I can’t go anywhere after taking the shower as I’m too exhausted and my whole head heats to a million degrees leaving me covered in sweat, I look so attractive when that happens. It’s just one of the many side effects of my medication. If we add that to the amount of weight I have gained then my confidence is destroyed without even leaving the house.
So how do I change this? I can’t exercise as that leads to PEM or post-exertional malaise and I can’t change my diet as I can no longer make or even prepare a meal for myself. This leaves me eating bowls of cereal as my main and only meal of the day or jam on toast. Do I need help, absolutely but the last person we had to give me help just didn’t work due to the times I was allocated.
I have a dream I’m fighting for but life like this I can’t handle another day, let alone another year or two.
To help make a real difference to my life then please visit my GoFundme page. I need help to afford a larger car plus a Progeo Wheelchair and Mototronik system My Go Fund Me 🙏