Living with Spina Bifida isn't always nice and I found out later in life that I was born with it. I was born with Occulta , the mild form. I had difficulty learning in school . I needed help especially with writing, reading & math. At first I blamed my learning difficulties on my mother because when I was small she never gave me the attention and taught me anything so when i started school I couldn't even write my name!!
As an adult I have had problems with finding work but tried to get my hands dirty with any work going!! I did blame my mother for a lot but in the end I felt horrible because it wasn't her fault. Just hope she would except me saying sorry, when I found out I have SB & explained this wasn't her fault did she except me saying sorry after me explaining she did!!! Anyway, through life I managed to pull through. In the end I walked into a bar asking if they had any work going because i was looking for work, the barman said there was some kitchen work going, I replied with "I have my health and hygiene certificate but not on me" So I had a chat with the boss, started of with a cleaning job. This was better then nothing, well, cut a very long story short six years later I was running the kitchen.
The promotion went up but the wages didn't! I was in my early twenties at the time running a very busy kitchen, training staff, working along with the chefs, their assistant if they needed me, doing the orders/invoices etc. But I knew something was wrong with my health but i didn't knew why. My parents did not know about my SB, or they would've told me. Never heard of SB before I was told. Like I said my health was going down hill, I was in my early twenties and I finished work around 3pm and when I came home, quick sarnie and a brew (cup of tea) and went straight to bed. This is where I stayed until at lease 10-11pm. I got up thinking it was the morning. This went on for a very long time. In the end I had to have a chat with my parents. They informed me to retire. One of the jobs I had to do was to help my mum around the house, help her with the housework as much as I could. Which I did. My father used to come home from work for lunch and he often hear me cry, I was crying through my pain. Dad said to mum "What's that noise?" Mum replied with "that's our Liz, she's ill, I didn't knew how ill our girl is, we must do something for her, she tries her best to help me, something is seriously wrong with her, didn't knew how ill she was, it's breaking my heart, I hear her cry every day, how the hell did she run a kitchen?" dad said "you find the strength in you from somewhere" That afternoon I overheard their conversation. I had to retire from work when I was 25. Two years later after many tests at the hospital I got the result. They called it a long medical name, I said to doctors "You may understand medical book lingo but I do not what is that in plain English!!!" They said "YOU HAVE SPINA BIFIDA, you have the rare type of it hidden occuture which takes years to detect, YOU ARE BORN WITH IT, didn't you know?" In horror I said "No I didn't know this make great conversation around the dinner table tonight" They said "Didn't your parents know? surely they knew when you were born?" I replied with "Of course they don't know, would I be here at the hospital having every test under the sun if they knew? " At that second my father walked through the door (he used to work at the same hospital) he said "What's wrong?" I told him. He was shocked, with horror!!! Doctors said Brain, didn't you know?" he said "Of course i didn't know, my wife doesn't know neither, she had a normal birth with her as far as I can remember normal healthy pregnancy as I recall, the birth was alright with no problems". Years later they (doctors) just fooked me off with saying I have a 2" hole in my spine.
I had managed to have my son normal delivery, when I gave birth to him. Doctors wanted to give me a C section to give birth but I wanted natural birth. Lucky I gave birth to him in just 2 and half hours of natural labour, but I had a terrible nine months of pregnancy. Spent most of it in hospital - mainly for rest. I did have a misscariage with him in the early stages of my pregnancy but he wanted life and now he is a health 17 year old young man. Who I am very proud of.
When my son was 6-7 years old my SB was getting worse and now I suffer from very severe incontience. Doctors said all this was related to child labour. WHAT? 6-7 years later? I don't think so. So to the wonderful world of the internet I did my homework & found that SB and incointience is all related!!! Tried to tell doctors for years that this was the problem but they wouldn't listen... Anyway was sent to the local hospital for treatment and was transferred to a wonderful urology doctor who understand women's incointinece. I explain to her that one of her collugues said that that was related to child labour and even she said "not after all this time, I have found out something, i did my homework and you are a very complex case (tell me something I don't know) and your incontience is all related to your spine - all related to your Spina bifida, I'm no spinal expert but have spoken to doctors that are and they agree with me that all this is all related." Thank goodness I found a doctor (apart from my GP) who agrees with me. I have had different treatments to try and cure my incointience but no cure and now I am waiting for major surgery. Just pray that this works!!!
On one of the letters that my urology doctor sent me I was shocked in horror to read that (she informed me that no other medical staff have done) and informed me that my SB is caused by a 2" missing vertabra and this does explain the medication (1500mg of morphine daily plus other medication) and the pain I am in.
I informed the urology doctor that she informed me that no other doctor did. I told her "i love you for this, you are honest with me, I just got told 2" hole, but what caused that hole? a disc? something else?" when I informed my son (he is studying sports science @ college he informed me that this is a big bone and does explain the pain and the medication I am on and suffer.
BUT despite all the above I try and live life to the full and to the max, I try and walk every day and do my own housework, gardening etc, YES takes me a long time and slowly my life is going down hill BUT I do not let this stop me, I have a strong attutuide, positive outlook on life, you only have one life, LIVE IT FOR THE MAX, have the laughs, I always try and laugh about life as much as i can.
Keep you mind active and strong as much as you can, do this and you'll have a strong and an active life DO NOT LET anything STOP you doing what you want to do, YES Spina Bifida has slowed me down , I can't do certain things anymore but it hasn't robbed my life I treasure it even more.