Luctor et Emergo

Isn’t that the truth?
I know from experience, lying awake the whole fscking night, not being able to find a spot that does not generate heaps of pain and seeing the hands of the clock turn from midnight to dawn. Right when my despair is the deepest, light starts seeping through the blinds again. Funnily enough that’s not a comforting sight though. It means I have to face another rotten day, exhausted from pain, exhausted from grieving for a meaningful productive life lost, exhausted because all the joy has gone from my life. This is the hour that I often ask myself what’s the use of holding on, to keep on trying. It’s the hour that is the most dangerous, the loneliest hour I have ever experienced. The hour that you realize that in the end you are alone, it’s just you and you will have to comfort yourself or else you will give up and end it all, because all the years of relentless-never-ending pain, physical and mentally is getting to be much much more than you can take.

I know that if I can get past this hour I will pull the shattered pieces of my life together and will try to make it through another day.
Sometimes when earlier in the night my Morphine kicks in and I am able to fall a blissful short sleep, I wake up crying, tears dripping from my eyes, my pillow wet from tears because of the pain. My hip, shoulder, knee, feet every part of my body that touches my mattress is hurting so much, that I rather give natural birth to 10 babies than to face this much pain ever again. My husband, already used to my crying at night, absently half asleep reaches over to stroke my back trying to comfort me. I carefully sit up, taking care not to move too much because I will get dizzy and my orthostatic intolerance also works in bed and I will black out hen turning to another side. I try all relaxation techniques that I know of to fall asleep again, sometimes that works until I wake up again this time biting my pillow not to scream in pain and wake up hubby who needs his sleep because he has a difficult stressful job the next day. I get up, shuffle about, to the bathroom, clean my face and look at the person in the mirror with the haunted eyes and the black circles under her once sparkling blue eyes. She somehow looks familiar, like vague copy of someone I once knew. Who is she and what is she still doing here night after night after night. The soles of my feet are killing me, it is like walking on broken glass, when I finally reach my bed again I ponder on which side to lie on now. Can’t lie on my back because a disc in my lower back is pushing on some nerves that send jabs of burning pain down the back of my legs and so we start again on a side and maybe sleep for a hour until the pain is too much to bare again. I’ve tried to read but my vision is too blurred from exhaustion and my body needs sleep, if only the pain was gone or even less. I try to remember a night that I was able to sleep without waking up from pain, I can’t. Maybe 20 or so years ago when I still had a life, I can’t remember what it feels like to sleep for more than 2 or 3 hours in a row or waking up refreshed.
No-one knows where the pain comes from and even my morphine tablets do not touch the pain, they make me sleepy and make me fall asleep when the pain is still on a conscious level. Once it has reached my sub-conscious level in my sleep, I will notice it in my dreams as well.

Worsted aspect of dealing with so much pain night after night is that my spirit is depleted, my soul is dark and grieving, it’s like that part of my life has already left me and only my physical shell is still here. I noticed it more after my beloved doggy girlfriend died, she gave me a reason to get up in the morning, even though she had cancer she still wanted to be with me and go out. But in the end I saw her feeling like I feel right now. She wanted to be left alone and the pain that radiated from her eyes made me cry, still she didn’t want to leave me. She knew I needed her like she needed me. Now she’s gone, she’s free of pain, lucky girl.

I wonder if doctors know how our nights look like when the talk to us about your sleep habits. Go to bed at 10:00 PM they say. Your body needs to make cortisol between 10:00 PM and 2:00 PM they say, no coffee after 6:00 PM, no TV in your bedroom. Do they know about the monster of pain that haunts our nights? That by going to bed at 10:00 PM you’re inviting the monster to come over earlier so he can torture you even more? Have they ever been visited by the monster themselves? Do they know about the darkest hour before dawn? Maybe they should, maybe that would create more compassionate doctors, because that’s something we do not have enough of in our lives. Compassionate people, wether it be friends, children, spouses, family or doctors are much much needed. A day with a compassionate caring word, a hug, a cup of tea in bed, a pet on the arm or just a caring ‘is there anything I can do to make you feel better?’ is a better day and who knows maybe even a better night.

The invisible darkness or how one person can be 2 entities.

In a way you could say I have a multiple personality syndrome(MPV). I know I'm ill now and most of my time is spend indoors, alone. But every now and than I feel good enough to go out, to the park, the city for a coffee, me with my scootmobile, W. walking and we'll just sit there, me soaking up the atmosphere, being amazed by all those people who hastily move around, places to go, things to do. It's than that all of a sudden like a knife piercing my head and heart and out comes pouring the memories and images of a vibrant fun young girl/woman. She has loads of friends and acquaintances, she has fun, laughing, always up for a new adventure, she looks good, stylish yet like no-one else and sophisticated, always up for a new adventure, a picnic, a BBQ, weekends full of joy camping and swimming, singing silly songs at the campfire, building sand castles with her daughter, she is a person of strength, to lean on for all her friends, she is known for her loyalty , she gives and gives and gives. Who is this person? I 'm not her anymore, yet she and I are the same person, it's my alter ego.

I'm sitting there staring at a group of friends having fun, I know what I must look like to them. A middle aged, overweight, bald, handicapped female, driving one of those ridiculous scooters, she walks with a cane but it she really ill or is it just because she fat? She looks healthy enough, maybe she if she lost the weight she wouldn't need that scooter, lazy bitch. I know I look depressed, where is the fun in my life, where did that person I once was disappear to? Where is that girl that drank cocktails on a terrace in the afternoon, who went to football games and drank a beer and went dancing all night long? A wave of overwhelming jealousy washes over me, I _so_ want to be able to join them in their fun but instead I'm locked up in this world called M.E and illness that dehumanizes you. It's sad, no-one knows that woman I used to be anymore, it's like she never existed, like a fantasy that went up in smoke, a Fata Morgana. What's left behind is a weak shell of that vibrant person. Like someone said, this is an illness with layers and layers of grief and loss. If you shed one another appears.