During this week I have blogged about many of my experiences with hydrocephalus as a child, but I haven't yet posted about my experiences as an adult. Fortunately I have been quite lucky in terms of my hydrocephalus since my last shunt operation at age 11 and have only had once – annually revisions with my neurologist . I have, however continued to have headaches but they had never been bad enough for me to need operating on again, and they haven't been accompanied by sickness or any of the other symptoms that are usually related to shunt failure or malfunction in my case.
From a young age, I was conscious of the fact that I needed to be well hydrated in hot weather, and that, for example cloudy, humid weather made my headaches worse (because of the increase in air pressure), and I prepared myself for that as well as I could with my parents' help , although it still wasn't at all pleasant when I got very bad headaches due to this type of weather, and it was sometimes hard to explain to people why something as mundane as the weather affects me like it does.
Whilst I was living with my parents, they were obviously the people who helped me manage my hydrocephalus, and once I went to university, I made my lecturers, carers and close friends aware of hydrocephalus, so they knew what to do in an emergency. I took comfort in the fact that my shunt was working properly and that reduced the worry for me about something going wrong with it. However , I was always very conscious of the fact that, no matter how well I was feeling, there was always the possibility that something could happen to my shunt at any time, and I know this is still the case. This is in the back of my mind every day.
I am also aware of things like the fact that I have difficulty with resting my head and feeling like it's comfy when I'm in bed, or in my wheelchair for example, so I have someViscoelastic pillows which are very comfy and really help my head and neck rest. I find it very hard to be comfortable when sleeping because of the posture of my head and neck, as the wrong posture means that I feel nauseous, and in pain and sometimes vomit, as the posture will make me cough. I had tests for my coughing, and it wasn't allergy- related, it's posture- related as my pediatricians confirmed years ago. Posture is difficult for me due to my Cerebral Palsy too, as I struggle to sit upright and tend to slouch.
The the other things I have noticed are that my skin around my shunt on my neck and my abdomen will sometimes feel very itchy and it will be accompanied by a throbbing sensation there. This can be quite offputting at times, and I just go and rest when it gets very uncomfortable. I still have a shunt alert card in my purse and have told my fiance all about hydrocephalus and he has also asked my neurologist about it, and understands it well. I feel well prepared and well informed to be able to help others who have hydrocephalus.
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