Opening my eyes this morning, I couldn’t understand how I could still feel tired, exhausted even though I’ve spent the majority of the last few days sleeping. It’s a tiredness bone deep and unrelenting. It makes the most simplest of tasks so daunting. Showering, dressing, even eating is hard lately.
I have become somewhat of a pro at masking the pain. It’s much easier to respond to “how are you feeling?” with I’m fine. Living with a chronic condition means I will never get better. I will have better days and awful days but it will never truly disappear. Endometriosis has no cure. I’ve come to terms with what I have, with the restriction my illness puts on my life. But I still have tough times. I’ve had a tough time recently…
My pain has been everyday for the past 2 weeks. I am not bleeding. I have a substantial cyst behind my uterus attached to my ovaries. I have visited my specialist. I am waiting for an operation to have it removed. The surgery is my second in as many years. This surgery will tell my husband and I where we stand with fertility. That in itself is a nerve-wracking notion. My dreams for children could be dashed in a single day. But with my husband holding my hand, I’m ready to face whatever happens. I am waiting for this surgery with anxiety and restlessness. It almost feels like the 20th September will never come.
Before I can reach that hurdle though, I am blindsided by a different fear. Over the past 2 weeks I have struggled to eat, to live- I have had to take medication everyday just to function and to have relief from the pain. Looking at my calendar today, I froze as I counted down the days to my next period. I’m due on tomorrow. If I’m barely holding on now, barely keeping it together, what will the pain be like once I start bleeding? Thinking about it now, my throat feels tight, sore, like when you scream and your voice breaks and becomes hoarse. My hands are shaking as I write this. I could cry at any moment and I’m forced to take deep breaths.
I keep telling myself: I can do this. This is happening to me because I’m strong enough to handle it. I can do this. This becomes a mantra in my mind as I lay in bed, falling in and out of sleep.
I am putting this down on paper- my sisters who are struggling with this, pushing for a diagnosis, at breaking point do not feel alone. I understand your struggle, I know your pain is real and frightening, you are not alone. I am getting this out, because if I keep it any longer I will scream it out loud. It’s alright to be angry. It’s OK not to be OK, it’s OK to be scared, to cry, to feel low. It’s exhausting trying to keep it together all the time.
When Occupational Health called me; to check I’m really ill, they asked how I live my life. They asked about my mood, asked if I’ve ever self harmed or thought of suicide, I shouldn’t feel I have to lie. I shouldn’t feel ashamed to admit that I have had low times in my life, caused by my illness. I know what it sounds like, telling them that I can’t do the basic of tasks when I’m mid-flare. I shouldn’t feel guilty that I rely a lot on my husband. I shouldn’t feel guilty for taking the time to rest. My body is at war with itself- every day.
I refuse to apologise for being unwell.
A woman with Endometriosis has a difficult life. The constant fear of getting her period. When taking pain relief becomes a necessity. Finding out that it will be harder for her to conceive because of the scar tissue and adhesions, made worse by the surgeries she had to have to remove the endometriosis. The tension in her husband as he watches his wife in agony, in hospital, he feels helpless. The side effects of the hormone treatments she tried to get some relief. A teenage girl who hates her body for being broken. A 24 year old who has been put through menopause chemically. The look of confusion on an employer’s face when she explains she’s not physically able to do her job. Worry and fear when she opens the final demand notices, as Statutory Sick Pay isn’t enough to cover her bills. Having to pay for her prescription with a credit card because there’s no money in the bank. A husband holding his wife in the bathroom as she cries over another negative pregnancy test.
But these women are strong, resilient and compassionate people. Their hardships bless them with the gift to listen and understand. These woman are brave, because when they are broken and have every reason to give in, they will carry on. These women will cry themselves to sleep and get up the next day, ready for the next thing.
Since I have struggled with this illness, I have shocked myself at my ability to keep going, to keep pushing myself, to keep smiling- even when there was no reason to. I have met some truly inspirational women, all over the world, who have shared their story with me and it has made me so grateful to be part of such a sisterhood. These women have taken the time, pushed aside their own suffering, to help others. While I hate my illness and have rough times, I believe I was given this condition because I am strong enough to bear it, and if I can ease others’ suffering, I will do so. Every time.
I hope you’re having a ‘good pain day’, thinking of you all.