I’m not the same person that walked into the storm
January 23, 2017
As there is so much awareness focused on suicide and mental health at the moment, I have decided to open up more than I have ever before about my personal journey.
My reasons for sharing my journey are in the hope that I may help someone else feel less alone, understand what they are going through and believe that things do get better.
I hope this post may encourage others to reach out and ask for help.
There is no shame in admitting how you are feeling,
You do NOT have to ‘just keep going.’
You do NOT have to ‘pull yourself together.
All I ask is that you do NOT suffer alone.
Even if I only ever helped one other person, the pain of reliving some of my journey will of been worth it.
As I sit and reflect on the last four years, it’s hard to contemplate all the things that have happened and all the things that I’ve seen.
I have witnessed more than I should have done and scenes I wish I could erase from my memory. I have had horrible things happen to myself in a hospital and seen horrendous things that happened to other people while I lay in a hospital bed close by.
If like me, you have spent lots of time in hospital (my longest stay to date was four months) you will be able to relate to what I am saying. To date I have been diagnosed with Osteitis Pubis and it became so severe that I had to have the damaged bone removed and a bone graft and plates to hold it all together. After a slow recovery and lots of other issues arising, in the last two years, I have also been diagnosed with Urticarial Vasculitis , Ehlers – Danlos Syndrome , Osteoarthritis , Histamine Intolerance , Interstitial Cystitis and Follicula Cystitis . I have a week of tests and appointment next month and there may be more looming. I also need surgery for Femoroacetabular Impingement in both hips and that may be happening at some point this year.
It is inevitable that on any hospital ward you will encounter the elderly. You may even witness somebody pass away. I’ve witnessed more than I’d ever have wanted to see. I’ve witnessed terrible things that have happened to young people too and some of the illnesses and injuries I’ve witnessed I didn’t even believe possible prior to my hospital admissions.
I have seen people at their lowest, feeling like all hope has gone and I have been there myself.
I have truly been so low that the thought of a new day filled me with dread and fear.
I wanted to hold my breath and just disappear. I felt like a burden to my family and friends. I felt like they were all better off without me.
The horror of what I was going through coupled with what I witnessed daily on the wards, took me to a place I hope never to visit again. The picture below was taken in hospital and you can see by looking at my face exactly how I was feeling! The picture was taken during my four month hospital admission.
All I could see was darkness and I really felt like the person I thought I was had died.
I thought I would never get her back.
At the time I could not walk and no matter how hard I tried, the pain and weakness after spending four months in a hospital bed was beating me. I could not overcome it and I thought I would never walk again!
I am a perfectionist, a Virgo and I can be extremely hard on myself, far too hard at times. My inability to get mobile internalised, coupled with the trauma I was witnessing around me and I personally attacked myself big time.
It is hard to explain but I felt vile, repulsive and disgusting. I couldn’t even look at myself in the mirror.
I felt like I looked like a monster and medication and lack of mobility made me put on lots of weight. As a naturally slim person, it felt like I was trapped in the wrong body.
The wrong useless, no good body!
I locked myself away as I felt like everyone was ashamed of what I had become.
In my mixed up mind, I thought people were embarrassed to be seen with me, so I locked myself away!
If living my life the way I felt then was forever, at the time, all I could think was that I didn’t want to be here anymore. My rational mind knew I had everything to live for and two beautiful children. The darkness however was like someone had hold of my ankles and was slowly trying to pull me down into the darkness further.
Once I was home from hospital, I couldn’t leave the house because I could not accept I would have to use a wheelchair. I hated the way it made me feel. It triggered feelings in me that I still cannot explain.
I didn’t feel safe anywhere because I had witnessed the things life could throw at you in hospital and I was scared to go out.
I felt like this big, fat, smelly, ugly, revolting, useless, paranoid lump of a person. I wasn’t me, my mind had been taken over by the darkness.
I thought people were looking at me in disgust and I just wanted to hide away.
It was knock after knock for the majority of 2015/16 and diagnosis after diagnosis and it felt like every time I went to the hospital I was being told something else was wrong.
After my pelvic surgery, my body went into melt down. My hands started swelling up, knees, my hips were excruciatingly painful, I Kept feeling like I was on fire, exhausted and then I started to get bladder infection after infection and they would not go away. Pelvic surgery, bladder biopsies, catheters, knee draining, steroids, tests, examinations, the list goes on!
It was an awful lot to take in and at the time it was just too hard, I really did not know where to turn.
I was in pain because I could not take my pain relief as it made me want to sleep all the time. I am a Mum, I can’t sleep till the house sleeps but I’d get so tearful because I just wanted to curl up and sleep forever.
I felt devastated for my children, I felt like I had failed them and was no longer good enough to be their Mummy.
Every single day it felt like I was trying to shuffle through thick sticky mud. My legs were like led and it was so hard to take the smallest of steps.
Inside I felt empty, emotionally numb and completely disconnected from everyone. I no longer cared if I saw friends or family, I felt nothing and it was like my heart turned to stone. The only people I could feel any affection for where my children. This put massive strains on my marriage and the arguing spiralled out of control leading to half a year of complete separation.
I literally shut everyone off, I just wanted to be alone and I didn’t want anyone to look at me. It’s so much easier to be unwell by yourself, there is no guilt about not being affectionate enough, being grumpy/angry/tearful. It’s just so much easier to cope without anybody else’s demands.
When you are feeling this low, It is really hard to empathise with other people’s needs. At the time, all of my energy was going into making sure the children were loved and happy, I was too exhausted to give anymore. My children kept me going and somehow led me through the storm.
I had always been so full of life and so active. Dancing all night with friends, Zumba, horse riding, swimming and running for miles.
I had just qualified as a teacher and life was good. Apart from the usual life stresses I didn’t have a care in the world. I was happy being me and I loved my world.
Looking back at the years leading up to my health problems I can see where things started to spiral.
I thought I was invisible and nothing could touch me. I was too busy to breath, too busy to relax and too busy to just stop and take it all in. I was studying to teach, volunteering at a school, working for Clarins and trying to be the best Mummy I could be.
When I started my first paid teaching position, the perfectionist in me wanted to be the best that I could be. I would sit up all night sorting out student BTEC folders, designing my lesson plans and course content. I taught BTEC Art and Design so there was always so much planning and preparation. I carried on burning the candle at both ends until the pregnancy knocked me off my feet and hospitalised me. Looking back now, I completely drove myself into the ground.
I function better when I am stressed and juggling 10 things at once. I am my Mothers daughter, she is the same. I have learnt the hard way though, if you keep pushing yourself to your limit, something will break.
After my hospital admissions I felt like I had fallen into this huge pit and that there was no way of climbing out.
I felt like it was better if I just didn’t exist anymore and I believed the world would be better without me!
I realised how much I had taken for granted in regards to my special time with my son. I thought those days would never end and that we had all the time in the world.
However, at just four years old, his world changed as he had once known it.
Mummy fell pregnant and she was never the same again.
No more chasing each other in the park, climbing up climbing frames, piggy backs or play fights.
From that moment on it was,
“Ouch watch Mummy,”
“Sorry darling, Mummy needs to rest.”
He would and still does panic if I go to a hospital appointment and asks over and over if I am definitely coming home that day.
I felt so unbelievably useless and like I didn’t deserve him.
I felt like I had completely failed him.
I felt like I didn’t deserve to be here. I was so low that I couldn’t rationalise the fact that I just needed to rest and I couldn’t imagine that things may get better, I just felt so useless.
I had to sleep in a hospital bed in the living room, wash in a bucket in the living room and use a commode to go to the toilet in the living room. I felt like I had been stripped of all dignity and that there was nothing left of the person that once was.
I didn’t just feel guilt for my son I did and do still suffer with guilt for my daughter. She is too young to remember the last time I walked without a stick. In her short four years of life, I have missed seven months in total by being in hospital.
I have never chased her round the park, never given her a piggy back, danced with her or been on half the adventures I managed with my son.
I have always been poorly Mamma to my daughter.
She was such a miracle baby and we both went through so much to bring her into the world and when she was born I thought I’d be able to do all the things a mother and daughter would do together. Again I felt like I did not deserve her and that I had failed her in so many ways.
She had to spend her third birthday in a hospital garden, yes we made it as special as could be but it hurt me to the core to see what I was putting her through.
I was feeling so many emotions and I could not handle them especially with all the physical difficulties I was having to endure.
I am unsure of when or how it happened or what caused it to happen but I know my children were holding my hand and leading me there.
My song to them both (a song my beautiful Nan has always sang to me) has always been, ‘You are my sunshine’ and I have the first few lyrics of the song on a bracelet (they are a set of charm bracelets from Annie Haak )that I never take off. My bracelets also have a guardian angel charm on them and I wear them to remind me, that these two beautiful creations of mine, pulled me through.
You are my sunshine,
My only sunshine.
You make me happy,
when sky’s are grey.
You’ll never know dear,
How much I love you.
Please don’t take, my sunshine away.
One day I just woke up and things seemed brighter. I thought to myself, this is not me, I am not a victim and I am not letting this pull me under!
I am a strong woman, I am a warrior who has battled through pain, hard times and fear. I have power and a light within me and I am going to let it shine!
I decided if people looked down at me, it was their problem not mine.
I realised the best way to cope with what was happening was to fight,
Fight to grab my life back by the horns and be me again.
Fight to prove I can do anything I wanted to do before AND better.
Fight to raise awareness and stop women suffering alone, especially after and during difficult pregnancies and birth trauma.
Fight to get the voices heard of other young Chronic Illness, Pain and Life Changing Injury sufferers.
I wanted to make a difference and I knew I had to save myself first.
I agreed to start Talk Therapy and I agreed to start working with a Pain Physiotherapist. These are different to a normal Physiotherapist, Pain Physiotherapists are far gentler and only take you up to the point of pain and then stop and tell you to rest. The aim is that they do not want you in pain or pushing yourself too hard. I wanted to get some of my mobility back and I wanted to get driving again to give me back my freedom.
I stopped giving up and realised yes I was in pain and yes I was tired but I was not dying and I had so much to live and fight for! I had two beautiful children who were looking up to me and they needed me, they needed me to be present and fully engaged in their lives.
I realised that the wheelchair,the walking sticks and what I had been through did not define me, I defined myself. So what if I had to move around differently?! I was still alive and I had two beautiful children who needed me to live.
I am not going to pretend that it was easy because it honestly wasn’t. There were and sometimes still are days where I crumble, I am only human, we aren’t robots. I was determined though, I had to get out there and be me again, I was so sick of hiding away.
One thing is for sure I have learnt life is incredibly short and you have to do all you can to be happy.
If you don’t like something don’t have or do it. If you hate your job, try to find a new one and don’t waste the precious days of your life hating what you do. If your relationship is not a happy one, think about ways to make things better or put the relationship to rest.
It’s never too late to learn something new, try something new or be a new you. If your heart wants you to explore something, explore it.
Your life can be snatched away from you in the blink of an eye, all you once knew gone and all you once loved no longer within your reach. So live for today and stop worrying about tomorrow. All that matters is that you are happy in the here and now.
It has taken me four years to realise this and it’s not something that happens over night. You can do it though and you have got this.
It sounds silly but I had spent a whole year out of action in 2015 and I was more or less house bound in 2013/14, 2015 was the worst By far though.
When I got the courage and strength to get out and about again, so much had changed! It was so odd at first, roads had changed and roundabouts built, shops had changed hands or new shops built. Houses were popping up all over the place and suddenly you could do this contactless payment with your bank card!! It was so bizarre and like I had been stuck in a time warp. kind of like a new awakening! I was very nervous and at first it felt so strange.
I decided the best way to get my confidence back was to go and get a coffee and just sit and chill in Costa or Starbucks. Most coffee shops are full of friendly faces and you in turn are surrounded by people. You don’t know these people so you do not have to talk to anyone. The hum of voices and clatter of tea cups on saucers are strangely comforting after the silence during the long school days at home.
I then started taking my work to Starbucks to do and it was in Starbucks that I spotted the first advert for my college course.
I set up an awareness page to make invisible illnesses visible. I also share awareness for all types of Birth Trauma after my own difficult pregnancy and birth experiences.
The name came about from the extremely difficult pregnancy. I was in so much pain due to all the pelvic damage and at that time, it was still undiagnosed. I did not want to look at my bump negatively or associate the pregnancy with the pain. Naming my bump helped me to separate the cause from the pain. My bump became my little ‘Grumpy Bumpy’ and the name of my awareness page was born. I was in a side room, very isolated, scared and fearful of what may be. I had very little emotional support from medical staff and very little explanation of what was happening. We had an extremely difficult time after the birth and I had no counselling at the time or help to process all that had happened. I was later diagnosed with Post Traumatic Stress Disorder . I decided then and there that I would do all I could, to ensure that no other women suffered alone.
I started a support group for other Mums like me and I decided I wanted to make a difference, I am now studying to be a Hypnotherapist and Psychotherapeutic Counsellor.
I hit rock bottom and found my way out and I want to help others to do the same. For me, Counselling will be a way to help people further and on a much deeper level.
I am up on my feet after two long years of pushing myself harder than I have ever pushed before. Yes I use a walking stick and no I can’t walk far but I’m up and I’m back in the world. I just stick to activities that only have short walks or plenty of places to sit and have a rest.
I previously worked in the beauty industry for 18 years and I now use all of that experience to inspire and educate others and for the first time in a long time, I am me again.
I am still in pain and l still struggle and have days that I have to give in and go to bed.
I treat the pain like a bad gremlin that takes over my body from time to time. I do whatever I can to put him back in his place though, he will NEVER win again!
There are lots more tests on the horizon and more surgery to possibly go through on my hips but I’m not going down again, I am not going down, without a fight!
I refuse to go back, I am not being that person EVER again!
I have seen too much, learned too much and tried too hard to get back from the suffocating darkness. I refuse to go there again.
I go and get my nails done every two weeks because it makes me feel good about myself.
After dropping the children at school, I sometimes take all my work for the day and study books. I go and sit in the cosy warmth of Starbucks, enjoying the feeling of being back in the world.
I no longer save clothes for best because I now know that the ‘best day’ may never come. If I like something, I am wearing it because life is too short to leave it hanging in the wardrobe!
I volunteer once a week at my daughters school, usually doing arts and crafts with them all. I want to be as much of a part of her world as I can be.
We have got so much catching up to do. I want to absorb every precious moment and memory and embrace every step we make along the way.
We go to play centres together and although I can’t run around with her, I sit and watch her jump and run around happily for hours and hours. We go to the cinema and we snuggle up at home and watch Barbie movies together, we never leave each other side.
I play computer games with my son, snuggle up when his little sister goes to bed on a Friday night and eat popcorn whilst watching movies. If we can escape, we go to the cinema together, we read together, draw pictures together and just like he does, I now live for the moment.
I no longer think too far into the future or worry about what will be. I am focused on the next three years and qualifying as a Hypnotherapist and Psychotherapeutic Counsellor. I am about to hopefully start a bit of voluntary work as a community support worker. This will gain me valuable insight and experience for the future.
I do not think of the past and I do not let the past upset me anymore.
If I want to do something, I do it and if the kids want to do something we try to do it the best way we can.
I still can’t dance with them but I am getting seriously good at throwing shapes whilst sat in the chair!
We have adventures again, they are just usually in places I can sit down regularly or sit and watch them enjoy their own little adventures in the world.
I am still me but I am a different me. I used to be so worried about what people thought of me. I was a people pleaser that gave way more than I got in return.
I put myself out to be with people, constantly making the effort to go to them and never them to me. I had friends that I loved and adored that in the whole four months I was in hospital, did not visit me once.
Yes I pushed everyone away but the people I now know are my true friends, saw past that and came anyway. At the time it hurt so much and was just another knock to deal with. Now I feel grateful that I have been able to realise who out of the people in my life are truly there for me.
My lifelong friend, bestest friend in the world Vicky is more like a sister as we have known each other since we were three years old. Vicky lives on the other side of the country but she travelled to be by my side.
On one occasion, I pleaded with her to take me out of the hospital. I literally sobbed like I had never sobbed before to her and it must of been incredibly distressing.
Vicky played a big part in me finally getting a diagnosis and being sent to a more specialised hospital for surgery. She saw how distressed I was and together with my AMAZING Mum, they made things happen.
Vicky visited me at home while I sat on the hospital bed and we laughed like we were ten years old again. We talked for hours and she had a way of making everything okay. Once I could get out the house, we went for a meal and sat and laughed till we cried, playing around with Snapchat filters (see the pictures below!)
Laughter is the best medicine and when life gets tough, surround yourself with the people who make you laugh to the point you almost wet yourself. The type of laughter that makes you cry happy tears, Vicky is one of those friends to me.
Now I truly know how precious life and happiness are, I feel that if someone doesn’t make the effort to be part of my world, I am not bothered about being a part of theirs.
Life is far too short to keep chasing a person that constantly has their back turned. Focus on the ones that great you everytine with open arms. The people that check if you are okay. The friends who are willing to drive half way across the country to spend quality time with you and the friends who bring you up and not down. Vicky is one of those friends to me.
I have other amazing friends in my life too, a friend called Marie who when I wasn’t well enough to go out and celebrate my birthday, she brought my birthday to me. A handmade birthday buffet complete with a homemade birthday cake, it was one of the nicest things anyone had ever done for me and I’ll treasure that memory forever!
I have another amazing friend called Gemma who knew how upset I was that my daughter had to spend her third birthday at the hospital with me. Gemma decided to throw my daughter a party in her house. I remember crying when I was shown the pictures, they were tears of joy and gratitude that someone was making a special time more special for my daughter.
I also have an amazing lifelong friend called Emma who I have known since school. Emma came on hospital trips to see me and took time out of her day to visit me and once I was out of hospital, she took me to my appontments and A&E. We could laugh for hours and Emma made those boringly long, hospital daya fun.
A friend called Tina who would visit ,take me to lunch and check all was okay.
Two amazing friends called Jane and Kerry who would bring me goody bags in hospital and my favourite Costa Vanilla Lattes. These two constantly checked if I was ok.
A lifelong friend called Claire who would visit me in hospital and we would giggle away for hours, I always felt so uplifted after she had been.
There are others who helped me through, a friend called Kerry who lives in Sweden yet made it to be by my side.
Friends I have known for years who would message and friends from the past who got back in touch.
My support group Mums who are there for me as much as I am for them.
Facebook friends who message me constantly to check how I am doing.
School Mum friends who are there for me on the school run.
I am incredibly lucky to have these amazing people in my life.
My Mum is fantastic (I would never of got through everything without her.) My Dad is just as amazing and I have an amazing Step Mum and two Brothers.
My Mum is my best friend, light in the dark and my guardian angel, never far from my side during hospital appointments and procedures. I can handle any pain if I have her hand to squeeze.
My wonderful Nan who does everything she can to see me smile, despite of her own health and pain.
My Mother and Father in Law for all they do to help me with the children and helping when I am in hospital.
Two lovely Sister in Laws who were there for me, would visit me and try to keep me smiling.
My husband, we have had lots of struggles and haven’t always got on or seen eye-to-eye! The stress on us as a couple was immense. Things still aren’t perfect but he is ALWAYS here for me and does all he can to help. Tries to pick me up when I am down, no matter how much I push him away. He is a Chef so has always tried to build me up with home cooked food, he does all he can to try and make me better and stronger than ever before.
My two children, the light of my life and my absolute world.
I am truly blessed.
I love ‘Breathing Underwater’ by Emily Sandé it really makes me reflect on everything that has happened and how grateful and lucky I am to of made it through the other side.
I never used to class myself as a strong person. I was emotional and I was scared of everything!
Now I know that I am strong and there really isn’t much I can’t handle, I am resilient and have the ability to push myself further than I ever have before.
I am no longer scared and now live for the moment.
These types of realisations are incredibly empowering.
I now truly believe that we aren’t able to know our true worth until we have been broken. It’s not until you hit rock bottom and you are literally wiped out on the floor that you;
Decide what to fight for
Decide how you’ll do it
Decide to get back up stronger then ever before
It won’t be easy but you have to fight.
Do NOT give up!
YOU are much stronger than you believe!
Trust me the air is so much clearer when you make it out of the other side.
Keep moving and do not let the storm whisk you away in its tornado of destruction.