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At MyBump2Baby we feel it is important to share real-life stories to raise awareness and support other people going through similar experiences. Today Lizzie Dean shares her disabled pregnancy story so far…
COMING OFF THE PILL
So my story began 6 and a half years ago, back before I became disabled, when my husband and I finally got married after 7+ years together. We decided to start trying for a baby and I came off the pill. My husband was ill with mental health issues, and we had a lot of trouble getting past the physical hurdle of getting pregnant. 3 and a half years ago, just as my husband was beginning to recover from his mental breakdown and life was getting back to normal, I became ill myself in November of 2016.
MY DIAGNOSIS WITH EPISODIC ATAXIA
It started like a virus, then quickly became daily periods of overwhelming dizziness, nausea, vision and speech issues, falling over, pins and needles and loss of motor skills in the hands and feet. It didn’t clear up and after a few months I started my hospital journey – I went through so many different departments (ENT, Audiology, Ophthalmology, Radiology, Neurology, Genetics) and was tried on many different drugs – but the answer as to why these attacks were happening eluded us all. As time wore on my symptoms got progressively worse to the point where I can’t stay upright for any length of time, and once I start standing or walking I quickly deteriorate into an attack, which often results in falls or what look like strokes. I was finally diagnosed with Episodic Ataxia, for which we are still trying to identify the underlying cause (genetic, mechanical issue in the brain etc).
My Work Didn’t Understand
My work we’re never very understanding or supportive of what was happening, and blamed me both for the illness itself, and for the lack of a clear diagnosis – both of which were obviously beyond my control. My father (who has also been clinically diagnosed with ataxia) and brother have similar symptoms but live abroad, and it took a long time for us to get bloods organised for cross-generation genetic testing, which we are still currently awaiting the results of.
After almost 3 years my work decided that they wanted to try and medically retire me, and I was asked to submit to questionnaires to my medical consultants, and then to hand in my resignation. Without my income we knew we would be forced to sell our house and move near my in-laws, to a house that they rented for us whilst we sorted out our new financial situation. I found out a week later that I was pregnant.
WE HAD GIVEN UP ON THE IDEA OF TRYING TO GET PREGNANT…
This was such a huge shock as we had given up on the idea of trying to get pregnant while we searched for answers, but also a huge silver lining at a time when everything I had ever worked for (career, sports hobbies, my house, my allotment etc) was all disappearing forever.
My pregnancy and parenting journey would now be as a disabled parent rather than the active, able bodied woman I had been before…..
Once we had settled into our new home the reality hit in that unlike the picture I had had in my head 6 years before when we got married, my pregnancy and parenting journey would now be as a disabled parent rather than the active, able bodied woman I had been before. There would be no maternity leave and maternity pay, and no money to pay for the new baby or the things we would need. We didn’t even know where we would be living.
I began trying to find information on adaptations other people with similar episodic disabilities had found to work for them, or other stories of parents with disabilities – and found that there was shockingly little information to be found, and no clear central government or NHS information source.