The Reality of Spina Bifida, Nerve Damage & Chronic Pain – Guest Post by Aileen

Aileen’s guest post is the 33rd post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Aileen!

Hello, my name is Aileen and I live in Dumfries & Galloway, Scotland, with my husband, Joe and my cat, Christy.

Aileen is smiling at the camera, with her back against a window

My Story

I am 50 years old and was born with Spina Bifida. I was also born with my left hip dislocated which had been surgically put back in place several times throughout my childhood, but each time it just dislocated again so in the end I just grew to walk with it dislocated and compensated for this, even to the point where I grew an extra bone socket in the hip; which looked very strange on an x-ray!

This has always caused me some pain, but it wasn’t until I was in my late 30’s that it was causing me to have so much pain that I was advised to have a hip replacement in 2015. I went through my surgery in November 2015 which was quite traumatic for me as my hip dislocated the day after the operation and I had to have a revision the day after that to put my hip into a different place.

The revision operation was a success, but I ended up being in hospital for 6 weeks as I contracted an U.T.I. (Urinary Tract Infection) and then I got Sepsis so it wasn’t a very nice time for me! However, I got better thanks to the amazing care of the nursing staff at the hospital and was eventually allowed home for Christmas that year, much to the delight of me and my family!

Even although I have now got a brand new hip and it is still in place, the operation has not been a complete success for me as I have replaced pain with even more pain than I had in the first place and the nerves in my left leg have been damaged somewhat due to my tendons being stretched to accommodate the new position of the hip joint!

Spina Bifida

The type of Spina Bifida that I have is Myelomeningocele Spina Bifida where I was born with my spinal cord open along several vertebrae in my back allowing my spinal cord and protective membranes around it to push out and form a small hole in my back. This hole was closed over in surgery when I was 13 hours old and I haven’t had any problems with my spine since.

Some of the symptoms that I live with on a daily basis include weakness and pain in my legs which makes it quite difficult to walk with my crutches at times without taking regular rests. I am more at risk of falling too and have done on many occasions both at home and outside and that is when I am sober – lol!

I also suffer from an extremely weak bladder that means I need to go to the toilet often and sometimes without much warning and I really need to go there and then or I could have an accident! Often many people who are born with Spina Bifida are incontinent and this was the case with me up until I was aged 11 and then all of a sudden and unexplainedly I woke up one day and I wasn’t incontinent anymore and was able to go to the toilet like everyone else!

I put this down myself to my mum working with me on going to the toilet when I was small and sitting on it for a bit and using it and she would do this at regular intervals until probably my bladder was trained enough to alert me that I should go to the toilet and not rely on incontinence pads.

Nerve Damage

As explained before, I now have nerve damage in my left leg and this can cause me to wobble at times uncontrollably when walking and I just have to let this pass and lately have been able to control it more with prescribed medication. When I first experienced this I was absolutely terrified as I just didn’t know what was happening to me! It took a couple of visits to my GP before some tests were done and it was found that it was connected to my nerve damage.

Chronic Pain

I also live with chronic pain for which I take several painkillers for and I also attend my local Pain Clinic who have helped me in many ways to deal with the pain. I am not entirely free of pain these days, but I am now better equipped to deal with it by understanding more about pain and how to relieve it.

I have also been referred to a Pain Psychologist who is going to help me to accept my pain and work with me on how to try to block it out better with a series of CBT (Cognitive Behaviour Therapy) methods. I am not entirely convinced how this is going to help me, but I am open to trying it and am currently waiting on my first appointment.

The only way I can describe the pain is it can be like daggers bearing down on my hip and leg at its worst and total strain in my leg on good days. I deal with this again with pain killers and taking regular rests. My husband, who is also my Carer, has created some good exercise machines for me which allows me to exercise my legs to my own capability and pace and means I can exercise when I want in the comfort of my own home and these do help me both physically and mentally to deal with the pain.

Learning To Adapt

I have learned to adapt to the pain by filling my life with things to do such as arts and crafts, attending a Knitting Group, reading and listening to music. I find all of these very relaxing and they do help to take my mind off my pain. I have also just started volunteering as a Community Champion on the disabled charity, Scope’s community forum and find it very empowering as just helping people makes me feel better and helps to divert my thoughts away from my own pain.

I also have newly started attending Tai Chi classes which was recommended by my GP to help cope with pain and I am finding that it is helping me so far in coping with the pain as it hasn’t been quite as bad these days and I am loving the sessions!

I think since my operation, I have had to adapt to a total change of life. This is because I have to use my wheelchair more outside as I get very tired easily. When I do walk outside (which is very rarely) I am very slow on my feet. This is a total contrast to how I was before my hip replacement when I was still working and walking with my crutches.

I could drive then and was more independent, hardly needing any help from anyone. I also could walk a lot better and used public transport practically every day to go to and from my job. In my darkest days I do look back on my life then and wonder how one operation could change so much for me?! It is like I am living another life now, the life where my condition has deteriorated somewhat and I need to be looked after more now.

I often feel angry and upset by this and feel that I have been dealt an unkind blow at the hands of the surgeon, but then I remember that I have a lot to be thankful for and try to concentrate on what I “can do” rather than on what I “can’t do” now. I basically try to take one day at a time and I have a wonderful husband, family and friends who also support me so much along the way, they are amazing! So l guess life, on the whole, isn’t so bad after all!

My Favourite Villain

My favourite super-hero is actually a super villain and I think she is brilliant – Catwoman! I love her for her sassiness and sexiness! She epitomises everything that a woman is – strong, fierce and independent! The ways in which she challenges Batman and Robin are awesome! She is a true heoine in my eyes.

Tanks Aileen for sharing your story wth my readers and me!

2 thoughts on “The Reality of Spina Bifida, Nerve Damage & Chronic Pain – Guest Post by Aileen

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