Bump To Birth And Beyond With Spoonfuls Of Glitter

This page is all about bringing those in need of support together both online and in person.

Hi I am Jen, I am a Chronic Illness and Chronic Pain Awareness Advocate.

I am reaching out to all women in pain, struggling to juggle their health and family life and all the hurt and upset in-between. I raise awareness and share my own journey, I also try to make sense of my crazy and chronic life along the way.

I will tell you my story, this is very painful for me to share but I feel I have to. I have to do it for everyone out there who is as confused and frightened as I was. For everyone suffering alone and struggling to find the answers. This wont be an easy read and please scroll past the pregnancy part if you are easily triggered. I don't want sympathy, I want to reach out and let you know, I see you, I hear you and I feel your pain, I understand and I am here for you.

I had my first child in 2007 and suffered severe SPD (Symphysis Pubis Dysfunction) and spent most of the pregnancy in agony and unable to walk without crutches. I tried to give birth naturally and after all the pain in my pelvis I barely noticed the labour pains but my body had had enough and I ended up having a C-section.

I recovered fairly well (or so I thought! ) and was soon back to the things I love, dancing, the gym, aerobics and started studying to be a teacher.
I landed a dream job my first full paid teaching job and was in my element. In 2011 I found out I was pregnant with my second baby and I graduated shortly after in the September.

By the January of 2012 I was in so much pain I was signed off on early maternity leave and by the March I ended up having to be hospitalised for the last three months of pregnancy on bed rest. My little boy was only four years old at the time so it was heart-breaking having to leave him.

I was alone for those three months in a side room, scared and anxious of what lay ahead and it was here I decided, I must reach out to others Mums who may be experiencing the same or similar. I thought about how much difference it would make to have someone to talk to that had been there and understood.

I was due to have a C-section at 35 weeks as it had been deemed the pain was putting us both in stress.

The day came and I was nil by mouth and ready to go until the specialist turned round and said "you do realise you are putting baby at risk just to ease your own discomfort". . . . . discomfort??? I felt like I was splitting in half and nobody believed me! ! I obviously then refused to have baby early, , till I was 37 weeks and in their eyes full term.

I finally got to the day of delivery and was taken down to theatre. Id had a C-section before and sailed through it and knew what to expect. . . . .
How wrong to assume two could ever be the same! ! I was in theatre for almost three hours! ! Due to all the heavy pain relief administered by the ward, they couldn't get my right side to go numb. They kept spraying me with cold water, pricking me with pins and I could feel everything.
My husband kept asking why I was moving my leg around, wriggling my toes, we knew it wasn't right. . . . . . then they started, they made the first cut and I felt everything! ! Suddenly everything became a panicked blur, the anaesthetist kept pleading with me to be put to sleep, I thought my baby would be dead and I wasn't going to let them hide it all from me!

Like a miracle, a shining light in the dark, my little girl was born.

For the rest of that day we lay side by side in our bed and cot, she was feeding well and so beautiful.

I couldn't believe how lucky I was.

However by 7. 30pm she became agitated, hot and angry. She scratched at her face, wouldn't latch on for a feed and she had the highest pitched cry I had ever heard.

I couldn't even pick her up at this point to comfort her. I had a morphine pump in one hand and another drip in the over so couldn't use my crutches and was in too much pain at this point to roll or move. I was so scared that I had done something wrong and nobody reassured me or came to help, they just left me laying there with her screaming by the side of me!

By midnight, the Midwife and a Doctor came and said they had to take her for some tests and then down to NICU. I was so anxious and when I tried to ask what was happening the Midwife snapped at me "for goodness sake, you must of known what all that medication would do to your baby, what do you expect?" . . . . . . . no I didn't know and because I was told by the specialists, you need to take pain relief because the pain is putting harmful stress on the pregnancy, I took their medication. I didn't want to, I had to, but in that brief moment she made me feel like a drug addict who had knowingly put my baby at risk.

The guilt forced on me in that moment will never leave and is something I still struggle with to this day.

I was completely crushed, inside and out!

My poor little girl had to spend just over a week in the NICU unit withdrawing from the medicines. I refused all pain relief so that my breast milk slowly watered down and withdrew her naturally instead of her having to take medication. Luckily the withdrawal off of pharmaceutical drugs is quicker than withdrawal off of recreation drugs but the side effects are the same.

It was awful, truly awful, I felt like they had poisoned my baby and I felt betrayed and like I couldn't trust anyone.

I felt helpless, hopeless and utterly crushed.

I was discharged with a new born baby, after being in bed for three months. I was unable to walk, had to use crutches and had no follow up, no physiotherapy, no counselling and no support. Once home the Midwife appeared once and we slipped off the radar.

For the first year I tried to get back to normal but the pain just wouldn't go away! It still felt like my pelvis was cracking in half and it was so painful to walk, stand, lay in bed and function, it was really getting me down! I couldn't go back to teaching as I was in too much pain, this was devastating after all that hard work and dedication! I was more or less a full time wheelchair user by year two and nobody knew why. I was in and out of hospital and day by day things were getting worse.
Thankfully, my little girl made a full recovery. She has absolutely and there is no lasting damage or side effects and she is the most beautiful little girl, inside and out. She plays football, goes to cheerleading club, dance club and freestyle. She lives life to the absolute fullest and she is fearless, I'm sure this strength was embedded in her after such a bumpy start. I look at her daily and think how lucky I am to have her and to get through what we got through together. Both my children are my absolute world.

By Christmas 2013, I ended up going in to have the pubic bone scored with steroids to try to promote healing. At this point, id only had a simple X-Ray. . . . . . a whole year after the problem began! ! This simple operation caused a flare up in my body, my hands swelled, joints swelled and I was in agony all over. I ended up being diagnosed with fibromyalgia and Chronic Fatigue Syndrome. . . . . they never explained what it was or offered any support but from this point on everything would be blamed on the Fibromyalgia and stress! !

I was also diagnosed at this point with Post Traumatic Stress Disorder this also gets lots of the blame for my pain! ! ! I cant tell you how many times I have been told that trauma gets trapped in the body and causes chronic pain.

After a two to three week hospital stay they eventually after I researched and pleaded with them, gave me a Stork X-Ray ( an X-ray where you stand on one leg) and acknowledged something was going on and admitted that they didn't know what they were dealing with! This was two years at this point after my daughter was born!

I was referred to a Pelvic Surgeon in Cambridge and a CAT scan confirmed Ostietis Pubis, my pelvis had separated, there were lesions and the bone had crumbled away. So in March 2015, they removed the damaged part of pelvis, took a bone graft from side and plated and bolted it all together.

Recovery was slow and I was in hospital for a long time. Once home, we realised something wasn't quite right still. I was having all sorts of body flares and issues. My bladder had become incredibly painful and I started suffering from migraines, skin rashes (so severe I was admitted with suspected meningitis in March 2017. )

I have since been diagnosed with Ehlers Danlos Syndrome (EDS), Urticarial Vasculitis, they still say Fibromyalgia but my EDS specialists thinks the pain is more EDS, Arthritis, Follicular Cystitis (suspected to of been caused by the pelvic surgery) and problems with my digestive system and allergic reactions. I am also constantly tested for Lupus because of the things going on with my body.

It almost feels like, my body went through so much stress, it eventually went nuts. This experience was like a bomb going off, I call it my 'Pelvic Apocalypse. '

I would have been born with EDS, sadly it went undetected. I don't know how they missed the signs because there hasn't been a year of my life that's gone without joint injury, back pain and inflammation, not to mention all the weird reactions in my body. I now also know that had they known I had EDS, I would of had lots of specialist support through my pregnancies. I also have bad reactions to all medications, literally nothing agrees with me, we now know that is also down to the EDS. When I think of all the crap I have willingly taken just because it says to on the prescription, I feel so sad for my poor body.

If you are stuck in hospital, not just maternity, any hospital situation and away from your children and family, I am here.

If you are stuck at home suffering from chronic illness or pain, I am here.

Message me, reach out, or request to join my private group to meet other Mums who understand.

Please know, I am here, I understand all that you are and all that you are going through.

Jen

xxx