Question & Answer Time With Myself, 5/01/2018 -Life With Chronic Pain
January 7, 2018
Raising awareness for Chronic Pain
I am trying to raise awareness for Mums in pain and have been honoured to take part in some wonderfully inspiring Q&A sessions. These have been with some of the amazing Mums that are now a part of my journey and life.
After suffering my own life bomb with chronic pain and illness, I started a private online friendship group.
The group is for all Mums suffering from physical pain, mental pain or both and I asked the ladies if they would like to share their stories. The stories were both eye opening and inspiring. I thought it was only fair that I answer the same questions In the hope that I can reach out further and help others feel less alone….
My Chronic Pain
1) What is the cause of your pain?
I have lots of joint pain and swelling all over but my worst Chronic Pain is in my pelvis, hips and bladder.
I had very painful pregnancies and during the second, spent three months in hospital in agony. After a traumatic c-section delivery and post operative recovery, I developed PTSD I then developed Osteitis Pubis.!
After lots of hospital stays and treatment during my second child’s first two years, I had a pelvic resection. This means they removed the damaged pubic bone, replaced the bone with a bone graft from my hip and then plated me together. I developed Interstitial Cystitis after my pelvic surgery and have had two surgeries to try and relive this.
After a long and slow recovery I was diagnosed with Ehlers Danlos Syndrome and have something going on with my immune system but they haven’t got to the bottom of that yet. I am also now waiting for more surgery after finding out I have Femoroacetabular Impingement in both hips. I also have to follow a histamine free diet to try and calm the inflammation and flaring down,
Day to day life with Chronic Pain
2) What is your day to day life like living with this pain?
My life sometimes feels like I’m living a lie. I find it very easy to type about what’s happened or how I’m feeling but in person, I’ll pretend everything is fine or just say “I’m ok, just tired” when people ask how I am. There’s actually not a minute of any day that I’m pain free but I’ve learnt to grit my teeth, hide it and act like everything is ok.
3) What have you been treated like by medical professionals, good and bad?
Sadly, my only truly positive experiences with medical professionals has been mainly with the ones I’ve had to pay and see privately. However, I’m extremely grateful for the two specialists I visited privately because they made sense of the mess that my medical care had become. They have also continued to provide so much support.
My NHS pelvic surgeon was fantastic but when it came to my slow recovery after, nobody at the time knew why. He fixed the main issue but I felt let down that my further problems went so overlooked.
The only time I’ve felt truly listened to in an NHS hospital was when they thought I had meningitis. All precautions and procedures were carried out. However, yet again when boxes couldn’t be ticked and I went back to being classed as complex, they didn’t know how to help me.
I did have a fantastic GP who has sadly moved abroad. She used to call me every few weeks to see how I was getting on and was so easy to talk to. She went above and beyond to manage my care. I’ve also been looked after by some wonderful nurses and healthcare assistants who I will never forget.
Trying to explain Chronic Pain
4) What do you wish the medical profession understood about you and your pain?
That I live with horrid pain daily and I hide it well! If I’ve broken down and am saying the pain has got too much, I wish they could understand that it’s a pain that can’t be coped with. My pain threshold is high and if I say I’m in pain, I’m really in pain and need some help! I don’t need folded arms, a sigh and to be told my health is extremely complex.
5) Name one improvement needed to your medical care, something you wish the NHS did better?
After some pretty big and life changing diagnosis’s, diagnosis’s that should have happened much earlier in my life than they did, I wish doctors could go back to the old school Sherlock approach. They’ve stopped looking at the big picture, at your past and all that you have been through.
Doctors only seem to have minimal information about their patients in front of them, just the past year or so on a computer screen! It feels like they aren’t joining up the dots anymore which means care is below standard and things are missed. Often I feel like doctors only look at the here and now and that’s not good enough when someone has a history linked to their current problems.
It is also so frustrating when I’m told my health is complex. I feel like I am being tip toed round because every treatement and medication causes a flare up in me. I can’t help this, I have no control over how my body reacts. Desperately I just want someone local that doesn’t take a painful and exhausting journey to get to, to know what to do with me so I can feel much better, I’ve got to the point where I can’t face going anymore and will often leave things till they get so bad that I have no choice but to go. I feel so misunderstood.
6) What do you wish your friends and family could understand better?
I wish they knew how bad I feel when I have to cancel plans or miss special occasions. The guilt literally eats away at me and makes me feel so sad.
Support for Chronic Pain
7) What Support do you get from friends, family or care staff, if any?
Not much at all to be honest. The kids never have a night away from home without me and other than the school day when I work from home and study, I never really get a moment to rest. I often joke, the only time I get to sleep is when I’m in hospital! Everyone works full time in my life still so it can be hard to get any help. I’ve met some wonderful Mums through our online support group and emotionally, we try to keep each other going.
Missing life before Chronic Pain
8 )What do you miss the most from your previous pain free life?
My size 10 figure! Steroids and other medications and lack of mobility have made me bloat out. Sadly I hate looking at myself in the mirror and avoid full length mirrors at all costs!
I miss going for a run more than anything, loud music in my ears and just me and the open road! I miss Zumba, the gym, horse riding and dancing the night away with friends.
Working from home means I miss my career and working with a team, it gets so lonely! I rarely go out now unless it’s to drop the kids somewhere! I sometimes feel like im just existing these days, I’m not really living anymore.
9) How has your pain changed you as a person, for better or worse?
My pain hasn’t really changed me, I’ve got so good at hiding it, I can block it out from myself now and I don’t let it win. It’s the physical changes to my body that have changed me. I hate the way my body makes me feel. I hate walking with a stick and I hate my slowness. The dissapointment in myself can make me angry, snappy, tearful and low. I’m working on self love but I’m a perfectionist with an imperfect life and body so it’s hard! I’m good at giving others advice but not great at listening to my own advice for myself!
10) What is your super power? What you do to hide the pain from those around you?
I smile, no matter what or how I feel, I just keep smiling, even if I’m upset or talking about something traumatic, I smile. I smile whilst having painful procedures done and also laugh nervously, my smile is my mask to the world.
My Spoonfuls of Glitter
11) What is your ‘“spoonful of glitter?” What you do to add sparkle to the bad days?
I never save anything for best, life’s too short so if I want to wear it, I wear it! I put a little bit of makeup on daily and swear by a nice perfume. My kids are also my glitter if it wasn’t for the unconditional love they both show, I don’t know how I’d get through each day!
12) If you had one wish, what would it be?
That my children could see the real me! My daughter has never seen me not be in pain or walk without a stick. This all kicked off in my body when my son was four so he can’t remember the fun, active on the go Mummy that I used to be.
More than anything I wish they could see me dance because I was good and could dance away all night. I wish I could chase them in the park, give them piggy backs, take them ice skating, bike riding, jump into pools with them and bounce on trampolines. I wish they could see the real me and how much fun I used to be!