I have had problems with my hips since birth, one hip dislocated and one hip not formed – this wasn’t discovered until I was two.  I spent the next year in hospital having treatment with a pin being fitted to secure my right hip and, although this leg was shorter than the left and I wore a raised shoe, I was happy and managed very well until I was 14 when I had to have an artificial hip fitted – the youngest person ever! (My claim to fame!)

This was great, giving me more mobility. I even joined my local Dramatic Club where I was able to perform in the chorus and the dance group.

I married at 21 and life was sweet, I worked as a Dental Nurse and loved my job. Aged 23 my hip failed and I had to have a pseudo arthrosis. Basically my hip was removed and I was on traction for 8 weeks. I had a metal bar through my bone just below the knee. When this was removed it was the worse pain ever (little did I know what was to come!) – much worse than when I had my two children!

I managed, but used crutches and a wheelchair – I had two children after having to give up my job – what a wrench that was!  I longed to be able to walk holding my childrens’ hands – it’s the simple things that you come to appreciate when they are taken away from you don’t you.

After the children were born my Husband and I built up a successful business designing, supplying and fitting bathrooms and  I struggled on, but was gradually getting worse.  Eventually we found a fantastic orthopaedic surgeon in Sheffield (a three hour journey from our home in Southport!) who said if I would give him a year of my life he would sort me out and I would be able to hold my childrens’  hands. He was true to his word, it was a difficult year with three operations, one to refashion my damaged abductor muscle and two hips replacements. My ‘good’ hip was so damaged with arthritis caused by taking all the strain that it needed to be replaced.  My ‘bad’ leg had a donor femur fitted along with lots of mesh, bolts and wires – but I learned to walk each time and after a year of recovery I could walk with the aid of a stick. My right leg had shorted by 6 inches, but the operation had lengthened it so it was only 2.5 inches shorter so I was back with my raised shoe, but what the hell – I could hold at least one of my kids’ hands!

Life was fine, although after 25 years of marriage my Husband and I divorced, but carried on running the business together – bit weird, but we thought we had no choice.

I met Alan who is my soul mate, I immediately felt a connection with him and we soon moved in together. His two children and my two got on really well – although mine were almost grown up – they stayed with their Dad in the house and Alan and I got a Static Caravan and all the children came often to visit and stay with us.

The only blight on my life was my weak bladder – I had a bladder repair and WOW it was fantastic to do away with the pads and the manic running to the loo!

2011 was going to  be our year – in February we took Alan’s children and my Son (my daughter was at home with our gorgeous Grandson) to Walt Disney World in Florida – my favourite place in all the World – and with Alan’s arms wrapped around me standing watching Illumination Reflections of Earth at Epcot I didn’t think I could be happier, especially as we had our wedding to look forward to on the 11th November (2011!) this date also being Alan’s birthday.  When he asked me to marry him I loved it so much that I said I wouldn’t give him my answer until he had asked me 100 times in 100 different places! Of course he knew my answer, but we had fun completing my request!

Fathers’ Day arrived and we all went out for a meal, Connor (Alan’s son) had stomach ache which turned out to be appendicitis and he was rushed into hospital on the following Wednesday. That night we went to see him at Alder Hey. On the way a car pulled out on us and we had to break – this jarred my back and by the time we got into the hospital I was in quite a bit of pain.

The next day at work, I twisted on my chair and felt a really sharp pain right across my lower back, but it passed so quickly I didn’t think anything of it. By Thursday night my back was killing me! – because of the problems with my hips I often got back ache and just thought the jolt in the car had set it off again. Friday was my day off and I usually saw my Mum, but I had to ring and say I was in too much pain to visit her.

I managed to get into the car and dragged myself into the Nurses room – she could see I was in agony – also one of the Dr’s came into the room, I told them about my back and they both agreed that I should take pain killers and keep moving.

Work on Saturday? Not a chance – the pain was so bad, Alan was so worried, but I am so used to ‘getting on with it’ that that is what I was trying to do.

By Sunday I was leaking urine and getting pins and needles in my legs, my daughter was worried and told me to get an ambulance – I said I was going to bed and I’d see how I got on – Stupid Woman!!

5am Monday – I was in absolute agony – THIS was the worse pain I have ever had – pins and needles in my legs like I wouldn’t have thought possible – couldn’t get out of bed, lost control  of my bladder and could hardly breathe because the pain was taking my breath away. I phoned an ambulance – Alan had gone in the spare room as he was frightened of hurting me in the night as any touch was agony.

I was taken to A & E where, to be honest I don’t remember much except sucking on the gas and air as if my life depended on it. I had an MRI scan and was eventually blue lighted over to Walton Neurological Hospital – this was, I think, about 8pm – all I can really remember is deliriously (trying) to sing “there is a mouse there – where on my legs going clip clippity clop on my legs”! I presume this is because the pins and needles where so bad it just felt like mice running up and down them!

Emergency operation – WOW! I have never been so happy to have an anaesthetic – I really wanted to die at this point and was yelling at them to chop my legs off – I had no idea what was happening to me – no one had spoken to me, but then, considering the mouse thing, they probably thought there was no point. Alan and my Brother were by my side when I came round – both very red eyed, it was going on for midnight and they were sent home so I could rest. I felt like my heart was being ripped right out of  my body – I just needed Alan with me – I thought I would be ok now I’d had this op – well, we all know what thought did!

The next day I was told I had undergone decompression surgery, I had an Epidural Abscess which burst – more than likely the jolt in the car had caused it – and the amount of poison in my body almost killed me. I had intravenous antibiotics until it came down to an acceptable level which took quite a long time.

I was scared stiff, I had a catheter, my bum and my legs were numb and so heavy – my head was battered, I just didn’t understand what had happened.

The physio came to help me out of bed, efforts! Oh well, here I go again – learning to walk AGAIN, but this time was the worst time, I could hardy move my legs and my bum felt so heavy. I had no idea whether I would achieve what I had in the past, but what I did know was that I was due to marry the love of my life in four months – that was if he still wanted me 🙁  Yes, we had that conversation, but he assured me that he wasn’t going anywhere and he loved me no matter what – he was crying, I was crying – the whole ward was crying – emotional or what!

It was a horrible time being in hospital, I was told I was have to use ISC – I hated it and found it so difficult especially as I didn’t understand why. Just typical – I just get my bladder sorted so I don’t leak, and now I can’t leak if I try!  My bowels were a nightmare – and I didn’t understand why. I just wanted to go home.  I cried a lot. I couldn’t tell my friends I was in hospital because I didn’t know what to tell them.  My family came to see me and cried a lot, even my sister in law – Nurse Diane cried – and I really didn’t know why – she never cried – she later told me she had only had two patients on her ICU who had had spinal abscesses – one was now a paraplegic and the other a tetraplegic – she was terrified for me.

The hospital were trying to find out what had caused the abscess and did loads of tests, the only open wound I had was the biopsy. They concluded it must have come from there. I’m not convinced though. There was no sign of infection and it healed fine. The biopsy came back clear so I hope it wasn’t that because, in a way, there was no need for it.

After four weeks in hospital, and getting to grips with the crutches (again) I was begging to go home. It was only three months now until our wedding and I had to get my head round it and walk down that aisle!

I had support at home, the physio, district nurse and doctor, but mostly from my Stoma Nurse who introduced me to the Peristeen Anal Irrigation System.  It would take a while to get used to it, but at least it should help to control things on my wedding day.

I had a prolapsed bladder, vagina and uterus and was bleeding loads. After the wedding I had a hysterectomy and pelvic floor repair.

My wedding day arrived, and although it wasn’t what I had imagined (a few things went wrong that wouldn’t have done if I had been well) I walked down the aisle with the aid of my big strong son and the love of my family and friends, to become Mrs. Alan Johnson – and that’s all that really mattered. We couldn’t dance to our first dance music, but we shuffled around a bit and our children joined us and made it fun.

Our wedding night was certainly not what I had imagined, not only due to the prolapse etc, but because of the loss of sensation to my lady bits – to be honest it breaks my heart to loose that part of myself, but I have wonderful (and a bit naughty!) memories and I have to live on those a bit!!

At the end of this month (June) it will be two years since my life changed for ever. I had to sign over my half of the business to my ex-husband as I can no longer work. I can’t even sit down without my pressure cushion. I had to sign the house over to him. I have lost my income and survive on sickness benefit.  Alan manages a farm and works hard, I feel bad that our life style has changed so drastically. Now that I am more mobile with my flashy purple crutches(!) and can drive, I feel I can look after him better. I have more time to help with my grandson and see my Mum, kids and friends. The down side is I have time to bake so we are getting well – shall we say more cuddly!

It has taken me all this time to accept what has happened to me, and, maybe, I will never come to terms with it, but I always try to find something good in everything. I know it could’ve have been a lot worse, it is such a rare thing – I might say “why me?” but why not? I believe there is a reason for everything and I would much rather it happen to me than any of my family or friends. God gave Alan to me as he knew he could love me better – and that is what he has done. I appreciate his kindness, patience and loving care more than he will ever know. He has gone through every thing with me and moped up much more than  tears!

The Spinal Nurses always told me that the shooting and stabbing nerve pains were signs of recovery, but when I saw the neurosurgeon she said they are ‘pointless pains’ – it’s just the nerves randomly firing off because they are damaged – it’s news like that that sets you back a bit – one minute I’m loving the pain because it’s healing me and the next I’m hating it because it’s pointless. At least she prescribed nerve blockers which help a lot.  

I dread anyone brushing up to me – my lower back is hypersensitive to touch, I’d rather have a good whack on my bum than a gentle stroke on my back – I can’t feel it on my bum! – mmmmm…… think that would be a good place for a tattoo – It wouldn’t hurt a bit!

If Alan hadn’t heard the piece on Rock FM trying to raise awareness of CES I would have still been in a wilderness of wondering – I haven’t been diagnosed with CES, but my symptoms are exactly the same, and on looking at other sites one of the causes is indeed abscess.

I will be going back to the Neurosurgeon to ask for an official diagnosis so that when I come to claim benefit, hopefully, it will make it easier.

If you have managed to wade through my story, I thank you for your time and patience, I could have gone on for a few pages more, but really, anyone that is affected by CES can fill in the blanks I am sure. I look forward to the next support meeting and chatting to people who know what I mean when I say my bums killing me – even though it’s  numb! Other folk just don’t get it!!

Try to find something to smile about each day and remember that a strong person is not the one who doesn’t cry, a strong person is the one who cries and sheds tears for a moment, then gets up and fights again.

Magical Disney Wishes to you all,

Belinda xx

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