If you got sick or had an accident tomorrow would you be able to lie in your bed with just the same four walls for company? What if it wasn’t just for a week or a fortnight let’s push it and say a month.
Think back to lockdown when you couldn’t see friends, family or go to work and while it was incredibly hard to go through most of us still had health. What if you lived alone or your spouse, family member or roommate was part of the critical workforce and couldn’t work from home meaning that they had to be away for long periods of time? It was an incredibly difficult time for so many people and that’s without the loss of a loved one being included.
What if you lived a life like mine and millions of others around the world, a life of solitude, a life of illness or disability? Nobody wants a life like this, a life of pain, a life so far removed from your old life. A life of torture, misery, a life spent grieving for the life I had.
Last night I was in too much pain to sleep and while on some nights when extreme exhaustion will take over my body last night didn’t go that way. Lay on my left side I spent a lot of the night using funny YouTube clips to help distract from the pain. I know that I am not in control of my body on nights in severe pain.
Being awoken to my phone, a drink or a lolly ice falling to the floor as I have gone to sleep. I never understand times like these as I can be doing an activity to sleep in a matter of moments. These moments don’t feel like I am falling asleep it’s more of a blackout, they are taking me from doing something I want to do, like switching over the channel to something I want to watch, reading an article in the paper on my phone or taking a drink. Only for the drink to go all over me on the bed or my mobile crashing to the floor or waking up to the credits of a program I thought I had put on meer minutes ago.
Times like this recently have caused accidents like smashing my head with immense force into the bathroom sink or most recently waking to the corner of my bedside table inside my eye socket. Days like this cause me immense anxiety.
I feel alone, abandoned. I know that people think that I have it easy after all I have a Husband and Daughter who do so much for me. So why do I feel so alone, I desperately need help and support. I have marks on my body that I will scratch till it bleeds, it will then form a scab which I will pick at the next time I am having pain that I can’t control.
From the outside, I seem to be in a metaphorical room full of loving friends and family. In reality it’s just me standing in the middle of that room screaming at the top of my lungs with no one listening, with no one to talk to. I can’t talk to my Husband as he stresses about everything and it’s not the sort of thing you can talk to your Daughter about.
I don’t want anyone else to feel this way because I know how much it hurts to feel this way. I know that feeling of everything going through your mind and you wonder what you have done wrong to me so alone. The pain of feeling abandoned, and worthless while not being able to do a think about it is torture in itself.
Every single week I speak to people who have so-called friends or family members who think that they are making all of this up. That they are nuts, looking for attention, that they just have depression, bipolar or so many other mental health breaks. ME causes pain, real pain, pain so real you won’t be able to think straight. ME leaves you in so much pain that you want to just black out because your body can’t take it, pain so bad that it is hard to wake up just to go through it all again, only for the next day to be so much worse
In our society, we have people with months left to live, who have to have chemotherapy for life-changing illnesses or people who have severe mental health issues, who are unable to claim the benefits that we have here in the UK. Yet I can. We have claim officers who have put others through hell before during and after the interview process to claim benefits here in the UK. Those very same people have declared that I will never recover from this illness.
It’s been almost ten years that I have been lying here on the left side of our bed in our white bedroom, next to the window. Most days I have difficulty walking the 8 steps that it takes me to get to my bathroom. Most days I will scoot to the bottom of our bed which allows me to use the bed frame to stand up, to then use the bathroom door followed by holdings onto the sink. Imagine after all that to get to your bathroom not having enough energy to physically go to the toilet. That’s the reality of my life.
I vowed to do what I could to make a difference and while the last few years have been immensely difficult I know that I will.
I want to end this post with something that I can’t get out of my head.
People make time for who they want to make time for.
Internet
People text and reply to people they want to talk to.
Never believe anyone who says they’ve been too busy.
If they wanted to be around you, they would.