I have connected with so many amazing Mums over the last few years. We’ve all had one thing in common, pain!
I started an online friendship/support group, via my awareness page for any Mums suffering from pain, grief and trauma and one by one, the group has grown. We support each other in times of need and we are there for each other unconditionally.
These ladies are truly inspirational and so strong, their stories need to be heard! I raise awareness by sharing my own journey with pain but I felt so strongly about the world hearing their journey too. I am trying to raise awareness for chronic pain, illness, trauma, mental health and disability and I’m trying to make the invisible, visible.
The best way to raise awareness is by speaking out and letting the world hear what is happening behind closed doors. Our pain will only become visible, when more people are able to understand and understanding happens after awareness.
I approached the group and asked if any of them would mind taking part in an interview about their lives. I gave the option of anonymity and everyone had the chance to answer the same questions, I felt this would allow varied experiences of the theme, pain!
This blog post is my first Q&A and I would like to thank this amazing Mum for bravely sharing her heartbreaking experience with pain. Sarah has decided to be publicly open about her journey and not remain anonymous because she admirably feels that other women will relate to her as a Mother if they can see her journey through both pictures and words. By being so open, Sarah hopes other women who are suffering alone may gain the strength to reach out for support and talk about their journey with pain, either physical, mental or both. Sarah also hopes that this will help others to understand our pain.
1) What is the cause of your pain?
The cause of my pain was a stress fracture in my pubic bone caused by a large baby. This was compounded by a slow growing tumour on my spinal cord that was discovered a month ago and I have just had removed. I write this from my hospital bed.
2) What is your day to day life like, living with this pain?
A day right now is post surgery rehab!
I wake up in hospital and two nurses help me get on to a commode to use the bathroom. Then they help me back to bed.
I pump breastmilk for my baby. Then I eat breakfast in bed, not as luxurious as it sounds.
The nurses help me dress and then I go to physio. Physio helps me use my muscles and helps teach my legs to walk again. Physio helps teach me to walk through the pain. Then I go back to my room.
The rest of my day consists of toilet trips and eating food in bed.
I am 33 years old and I’m the youngest in the ward by 40 years. My 9 month old comes in for breastfeeding and 2 year old sits on the bed with me resisting the urge to press all the buttons.
3) What have you have been treated like by medical professionals, good or bad, or both?
I have had nurses advocate for me and doctors comfort me and wipe my tears.
I have had nurses tell me I have to “just get up and walk, it’s what the doctors want, you need to just do it!” I then collapse into a sobbing mess into their arms and they realise that my “I can’t” really wasn’t the “I won’t” they had assumed.
Some medical professionals care and some care about the data and processing times.
4) What do you wish the medical profession understood about you and your pain?
That it’s mine and I’m experiencing it. Don’t tell me what I can or can’t feel. It’s my pain. I know it. I live and breathe it.
5) Name one improvement needed to improve your medical care, something you wish the NHS did better!
I am actually an Australian so I am not under the NHS. But I am grateful for the system in Australia but I’m unsure how it compares.
6) What do you wish your friends and family could understand about your pain better?
That I need them to follow my emotional lead. Don’t dismiss my pain.
Never, I wish I could underline that, NEVER tell somebody “things could be worse”. It dismisses their feelings.
It doesn’t matter what somebody else is going through. This is what I’m going through and what I feel is important. It’s here and now and I need you to just say “yes this is hard and I’m sorry you’re going through it. I’ll help you get through this however I can”, or just a simple “yep, this sucks” will suffice.
7) What Support do you get from friends, family or care staff, if any?
My husband is great with bringing my kids to see me to help me get my family time and recharge my batteries. He manages the house, he works, he wrangles babies, brings me chocolate, he holds my hand and carries our load on his shoulders. He needs a hug. I need to stand up and give him a big hug. That will be my Christmas present.
My mother is my strongest advocate, a nurse herself, she will take on the most arrogant of doctors and put them in their place. She gives me a voice when mine waivers.
My friends bring me stories of nonsense and joy, and chocolate of course.
8 )What do you miss the most from your previous pain free life?
Just being able to move and not think about how I’m going to do things and have an action plan for simple activities and outings.
Spending time alone. I rarely spend time alone, yes as a mum that is rare anyway, a mum with pain has zero time alone.
9) How has your pain changed you as a person?
I feel a bit bitter, more angry, that’s not a nice side effect. I feel there is an angry ball of fire inside me that grows so big when my pain flares, It spits lava at the ones close to me and burns them. I try to stop the words but it’s uncontrollable. I wish I didn’t take it out on them, I am working really hard to not do it.
10) What are your super powers? What you do to hide the pain from those around you?
I make jokes. “Ha ha ha” we all laugh together, I swallow that hard lump of reality and then everything will be ok.
I also need to stop saying “I’m good” when people ask me how I am. It leaves me in pain when doctors should prescribe stronger pain killers. It’s just a big mask screaming “everything is ok”, let’s pretend it’s not happening and maybe it will go away!
11) What is your spoonful of glitter?What do you do to add sparkle to the bad days?
The glitter of my life is my babies. They come and cuddle me. They lay on my chest and I breathe them in. I feel their warmth and our breaths synchronize. This will instantly turn a horrendous moment into a heavenly one.
I also use distraction like colouring in to help me focus away from the pain and use colours to help soothe and relax me. When I’m angry I often use reds and oranges and get it all out on the page. When I am trying to calm I use blues and purples. I was quite surprised how much just the different colours helped.
12) If you had one wish, what would it be?
That I didn’t have this tumor on my spine. I would have been able to handle the broken pelvis. This just made it all so much worse.
My realistic wish is that I will be out of rehabilitation and home for my sons first Christmas. Cross your fingers for me.
Thank you so much Sarah for being so honest. You are an amazingly brave lady and you are an inspiration!