As I wend my way into another week which welcomes me with sunshine, blue skies and what looks to be very hot temperatures, I am left deciding what exactly I should focus on this week.
With the end of April approaching fast I am beginning to contemplate what May will bring. One of the most prominent issues needing attention is to ensure I get a full medical service for the epilepsy which has been put in motion with the inevitable MRI and EEG booked. Having reached the ‘childbearing age bracket’, the need to come off the Epilim/Depakote is always being advised as its hazards hold high percentages for fetal deformities, learning difficulties and a plethora of other charming side effects. Typically, my body has created a stale mate against every other suitable drug which would be better for the health of a baby during pregnancy through heightened side effects including: hallucinations, personality deterioration and skin rashes. However, I decided to say yes to the experimentation of drugs once again to give it one last try irrelevant to whether I want children or not, I won’t expand on that just now, another blog perhaps…
This presents an exciting yet daunting phase and I walk away remaining very optimistic. However, I just have to keep my eyes peeled for the life threatening skin condition and insomnia which was advised as a well-known consequence of Lamotrigine. The joys!
As I was getting ready to go to my recent appointment, it got me reminiscing about my visits to Guy’s Hospital to see Professor Robinson as a child as well as my visits as an adult. I have continued to feel the same about them as I always did. Before I left for Canada, one of the most heartbreaking goodbyes for me was my last appointment at the neurology clinic. It made me realize how deep the connection runs for me with Guy’s and the doctors I have had the privilege to have been treated by.
For most people, the idea of hospital visits conjure up thoughts of MRSA, bad hospital food and a lack of wanting to go unless absolutely necessary! For me, I always loved going. On the way there it was chasing the pigeons at Waterloo Station (it also involved food, another significant memory connection!) and then once at the hospital, there was the waiting room. It contained the curvy mottled leaf green leather chairs that had me enthralled, plus, the gorgeously intricate wrought iron spiral staircase in the corner. I forever wanted to walk up to find out what was at the top, most probably because it had a no entry sign on it – red rag to a bull!
The trips didn’t always contain enjoyable events. When I was around six or so, I dreaded having EEG’s as they used to remove the electrodes with nail varnish remover. I distinctly remember sitting on a bed in a peach/orange room immersed in the suffocating smell of acetone which would make me cry because I couldn’t breathe. However, this was always okay because a) my mum was there but b) I loved Professor Robinson who was my paediatrician and all the related staff that helped me, they were on my side and it felt so personal. They always cared so much and it didn’t matter to me, I’d happily to do whatever was asked of me.
It’s interesting how most of my childhood memories are related to hospital visits/epilepsy. I have so many and despite the content, it never diminishes the fondness with which I have for each and every one as it adds to the uniqueness of my life. One of the funnier ones was when I was about four or five and I first went up to London for an initial consultation. The poor doctor was trying to take my temperature and I distinctly remember him putting the thermometer under my arm and telling me not to lift it until he said so. As he continued talking to my mum I got distracted with the toys and I needed my left arm and so I used it – glass and mercury everywhere! This continued and I managed to break a record two or three thermometer’s before they opted for the safer option much to my horror, and in spite of my bargaining!
Although my present hospital visits won’t include chasing pigeons or any thermometer breakages (I hope!), it is about a new phase which opens my life to the possibility of having a family if all goes to plan with the medication change. But, as always, it’s about having the ability to trust in the process of life. Whatever happens is just as it’s meant to be, so with fingers crossed, I hold on tight and get ready for the ride!