CVI Mascot - VIC

Blogs & News

Nicola McDowell’s Blog 18

Nicola McDowell sustained a brain injury aged sixteen, and for the following seventeen years was unaware that she had CVI. Through a series of blogs Nicola shares her experiences with us.

The hidden cost of CVI.

Less than a year after the brain haemorrhage that had caused both the diagnosed right side hemianopia and the other CVI visual issues that were undiagnosed, I was suffering from a number of different health issues that didn't seem to be connected to the brain haemorrhage in any way. Although each of these issues was relatively minor, collectively they were very draining. They were also very difficult to deal with, especially since I had always been a very healthy kid, who hardly ever suffered from any illnesses aside from the occasional cold. This new 'unhealthy' person was hard to come to terms with.

The first issue and probably the most debilitating, was the constant fatigue I experienced. In the first few months following my stay in hospital, this issue could be directly linked to the brain haemorrhage itself. However, no matter how much sleep I had, or how many days I had off school, relaxing at home, it never seemed to improve. After many months of this unrelenting fatigue, I finally started to notice a pattern emerge. On the days where I had spent a lot of time in visually cluttered, noisy and busy environments, the fatigue was much worse. Whereas, on the days where I had spent the majority of my time by myself in a quiet, uncluttered environment, I was not as exhausted. Unfortunately however, as every week day was spent in overwhelming environments at school, there was little respite from the constant exhaustion.

The next wearisome issue to rear its ugly head, was regular headaches. Again, at first, these seemed to make sense in relation to the brain haemorrhage. However, instead of the headaches decreasing as I gradually recovered, they continually increased, to the point that I was suffering from headaches almost every day. Although it was always very difficult to pinpoint the specific reason each headache occurred, it didn't take long to realise that there was a connection between my emotional state and the headaches. The more physically and emotionally draining I found the environments I was in, the more intense the headaches were. It almost seemed like the harder I had to work to force my brain to process what was happening around me, the more anxious I would feel and the worse the headache would become.

Then about sixteen months after my time in hospital, I developed a frustrating stomach complaint that did not seem to be linked with any of my other health issues. The first time I suffered the painful stomach cramps and the resulting urgent bathroom visit that is commonly associated with irritable bowel syndrome (IBS), I had no idea what was going on. As I was still mentally traumatised from the medical emergency of the previous year, I was very distressed about the possibility of another serious medical incident. Luckily IBS was not a particularly serious condition for me, just a nuisance really, and I quickly learnt to avoid certain foods that would make it worse. However, as it was also the time before 'Doctor Google', it was very hard for my parents to work out what was wrong with me and they often didn't really understand the absolute urgent need I had to get to a bathroom as quickly as I could. As many people with IBS can probably attest, eating out at restaurants didn't have the same appeal as it used to.

As none of these issues generally stopped me from continuing with life as normal, we adopted the 'she'll be right' attitude (which is a common phrase in New Zealand) and just soldiered on. However, things took a turn for the worse about eighteen months after the brain haemorrhage and I once again found myself in hospital undergoing more tests. I had developed severe pains in my upper abdomen area, as well as a high temperature and was unable to eat or drink for a number of days. This mystery illness developed after a fairly intense emotional period at the end of the school year. I was finding school increasingly difficult to cope with and was finding myself easily overwhelmed when trying to participate in social activities.

I spent about a week in hospital and underwent numerous tests, including x-rays and an ultrasound scan, but nobody seemed to be able to work out what was wrong. Finally the doctors decided to put a camera down my throat to see if that would shed any light on the situation. After the procedure, there was mention of a hiatus hernia, but as the pain had started to ease and I was on the road to recovery, I was sent home with very little advice about how to deal with it.

As each of these health issues arose, no one made a connection between them. This meant that every issue was dealt with in isolation. And although I was given medication to deal with specific symptoms, overall, I got used to feeling unwell a lot of the time. Life then became an endless cycle of anxiety, stress, fatigue, headaches and stomach complaints that started to limit the foods I could eat. Looking back at the whole situation now, there seems an obvious connection between the heightened emotional state as a result of my visual issues and the gradual decline of my health. But at the time, this wasn't something that any of us could see, including myself, my parents or the medical professionals I regularly visited.

It's impossible to prove that my lack of good health was linked to my sense of constantly being overwhelmed, but since I've come to understand and cope with my visual symptoms, I have learnt to manage the health issues better. For instance, I still suffer from headaches, but I now know what the triggers are and have strategies to lessen the impact and reduce their severity.

Working professionally, as I do with children with CVI, I believe my new appreciation and understanding of my overall condition has helped me to recognise similar patterns among the children I work with, and to provide strategies to help minimise the effects of similar health issues.

From CVI Scotland:
In his book Emotional Intelligence (Chapter 11 Mind & Medicine), Daniel Goleman discusses the impact our emotional wellbeing can have on our health, and quotes many clinical trials connecting poor emotional wellbeing (stress, anxiety, anger, depression) with physical health issues, some of which can be serious, even life threatening.

Nicola McDowell sustained a brain injury aged sixteen, and for the following seventeen years was unaware that she had CVI. Through a series of blogs Nicola shares her experiences with us.

HELP SUPPORT US

Your generous donations will be put to immediate use in supporting our charity...

Donate Here

About Us

At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.

TOOLTIP CONTENT