My bed is the only place that I don’t feel disabled

Punteha and daughter in bed

When I go to bed there is an absolute feeling of bliss and relief (Image: vtfeatures.co.uk)

I’m good at hiding my truth from everyone’s eyes, and people are often surprised to learn that I can cope with severe pain on a day-to-day basis.

“But you look so good,” they tell me, or “You seem so strong.” I do my hair and makeup every day and I’m generally naughty.

But anyone who knows me knows I clench my teeth through the agony of being a freelance journalist, being a parent, being half of a happy marriage, seeing my family and friends. I can’t sit on hard chairs in the pub, go to the movies, eat out, walk very far or go to the park with my daughter and will cancel plans at the last minute, all because of endometriosis pain.

My illness is serious – I had six surgeries and lost an ovary in 2019. I also have an ongoing hip problem from an injury sustained during pregnancy.

Sitting, standing, walking – all of this makes me feel like death. I usually go to bed minutes after my five year old because I can’t take the pain of the day anymore.

But when night falls and I retreat to the mattress, there is an absolute sense of bliss and relief. Laying flat is the only time my pain drops to a more manageable 3 or 4/10.

It’s also the only time clothes don’t make my pain worse because I avoid them completely under the covers even in winter.

In daylight, jeans or anything with a waistband are a no-go. Most of my knickers, leggings, or pajamas have been cropped around the waist to relieve the slightest amount of elastic pressure.

This is what my illness, in which cells similar to those in the womb migrate and bleed elsewhere, has done to my pelvis; Damage and stick to organs.

However, the night brings me relief, peace and is the only time I feel like a normal 35 year old woman. In bed, I can watch a movie on my phone without having to put a heat pack on my lower abdomen, an ice pack on my hip, or suffer relentlessly.

It also brings with it a part of my life that I cherish and am not willing to sacrifice for – sex. My husband and I like each other as much as we did on day one when we realized in October 2012 that we were meant to be more than just friends.

Orgasms bring me pain relief and make me feel normal. It also gives me back control of my body. I rule it instead of it ruling me with an iron fist of pain.

It eases my anxiety and bad mood — things caused by the unrelenting cycle of bodily pain — and helps me sleep. Our bed is a safe place, free from the stresses of parenting or life. It’s a space for being husband and wife and for me to be whoever I want to be during the day. The one who is not held back by pain or frustrated by physical disability and limitation.

There are times when I can’t be intimate and pain seeps into the night, stealing the sleep and my husband’s company I so enjoy. On those nights he sleeps in the guest room because the pressure of his body on the mattress is unbearable. He is understanding, kind, empathetic and never holds grudges. Life has brought me pain, but also given me a wonderful and understanding partner.

Not all partners get along with a chronically ill other half. A man I dated told me, “No man will ever tolerate your health.” His words — which thankfully ruined any chance of a relationship — still ring in my ears, especially when I’m in a flare of pain , because I fear my husband may fulfill this unfair and cruel prophecy.

He assures me that will never happen, and as we lie in bed, our physical connection amplifies his message on a physical level that my brain and anxiety can’t always accept: My husband loves me and desires me just the way he does I am and will never be abandoned.

Even though it causes me pain and there are times when I can’t get on with my urges, intimacy is a priority in my life

Our daughter understands why mom sometimes has to stay in bed for days. She comes to me with her iPad and cuddles with me. She understands and accepts my limitations without question. It is a pure joy and a blessing.

The temptation to read her night story in my bed so I can be a part of it is great, but it disrupts her sleep routine, so I sacrificed that craving. Instead, I make bedtime twice a week when my husband works late. I wince (internally) in pain, but I’m doing it so I don’t lose those precious early years.

Then I go straight to bed myself and recover from the day, torment, stress and worries. I lose myself in a series, meet up with friends and family or, if I want to, write or edit an article for my work as a journalist. My bed is a safe, comfortable place that doesn’t involve trauma.

At our previous home and at my parents’ house, I spent so much time in bed sick or recovering from multiple painful, traumatizing surgeries that bed was no longer a place of refuge. It made me anxious and unhappy just to be in this room. But luckily that didn’t happen in our new house. I hope it never will.

Some won’t understand if I explain that I often work in bed or consider myself lazy, but I take this freedom to stay in my pajamas all day as the ultimate benefit of being self-employed.

I’m not interested in people judging how I deal with it, or those trying to heal me with their toxic positivity and silly suggestions about yoga or turmeric. My illness is incurable. Only billions poured into research will change that.

However, if I had a magic wand, I would give myself a healthy, pain-free, and strong body. I hope that someday I’ll feel this way, or at least partially okay.

I’m well past the stage of fighting who I am and trying to be “normal” or capable. I’m not, no matter how much I wish I was.

Instead, I find peace and strength by accepting myself, living within the confines of my body, and feeling joy, comfort, and happiness even when that place is my bed.

I know many who have endometriosis and can’t have sex or intimacy, so I’m grateful I can at least do that. Even though it causes me pain and there are times when I can’t get my urges met (in the midst of flare-ups or due to the fatigue of surviving a difficult day or week), it is a priority in my life, intimately to stay.

In bed I don’t feel handicapped or different. In bed I feel nearly normal.

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