Meningitis in your words

Jennifer Kinsella's story

  • Location: Ireland
  • Categories: Pneumococcal
  • Age: Adult 25-59
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Hearing problems
Jennifer Kinsella

I contracted bacterial pneumococcal meningitis in February 2016, the weekend of my son's 5th birthday.

I thought I had the flu. In and out of sleep. I steadily felt worse with symptoms of a high temperature, confusion, headache, double vision, vomiting, a neck so stiff it couldn't be touched, dizziness, disorientation and, finally, the last symptom, my eye turned the other way. I thought I was having a stroke.

My husband rang the doctor and she told him to take me to hospital. I remember that I couldn’t bend my neck to get into the car. After this there are gaps in all I do remember.

By the time I got to the hospital both of my eyes had turned in opposite directions. I was brought into A&E where they monitored me.

Over time my temperature rose. I was very agitated. The doctor took a lumbar puncture. I believe I was taken into the isolation unit. I don’t remember this.

By the time my husband sorted the kids I had been moved, all staff were gowned with masks and the registrar told my husband that I had bacterial pneumococcal meningitis. Her words, "We now know which strain and we can kill it. We are doing all we can”. My poor husband.

I was admitted into hospital where I stayed for almost 3 weeks whilst on steroids and on 3 -4 hourly intravenous antibiotics. My blurred vision lasted about 2 weeks or so. I was incredibly weak. The smallest journey to the bathroom felt like I had run a marathon.

As the days /weeks passed I tried to move around more. Various specialists, doctors, consultants, students visited my bedside. My original symptom was an earache. I thought it was an ear infection. This information became very important as the consultants believed it may have been the origin of the meningitis.

As I lay in the hospital bed another consultant (after my numerous MRI scans) said I had a possible cholesteatoma in my ear. I didn’t understand the relevance and couldn’t absorb it all as he explained how dangerous and may have to operate. I was completely overwhelmed. I was being told that this operation involved many risks :((((( I couldn’t process it. Possible sixth nerve face nerve paralysis, complete loss of my hearing in my one ear. I couldn’t process it.

"I went home from hospital reluctantly after almost 3 weeks. I was afraid, I was weak and extremely de-conditioned. I didn’t understand when they told me how long it would take to recover."

I went home from hospital reluctantly after almost 3 weeks. I was afraid, I was weak and extremely de-conditioned. I didn’t understand when they told me how long it would take to recover.

A nurse came to give me more intravenous medication in our house for a few weeks. It was a very, very slow road.

I have two boys, they were 5 and 7 years old then. It was very hard on them and my husband. The boys thought I would be the same mum because, “I was better and home from hospital".

It took us all a long time to adjust. I was in bed for a long time. I would come downstairs for short periods and when I felt overwhelmed with everything I would need to go back upstairs for some quiet.

Over the weeks /months I slowly progressed. The months were peppered with consultant appointments, scans and referrals. I began to keep a sort of log so I could keep track of appointments and on top of the doctors! But I found it also helped document my progression. On the days when I felt really low, depressed and upset I would read over how I had done up to that point and recognized that I HAD moved forward. I got frustrated with the pace.

I got frustrated with many, many things. That I looked "fine" on the outside, the months had passed and I felt there was an expectation from others that “I was better". I was frustrated with the pace and that I was overwhelmingly exhausted after the smallest task. Months went by, I realized I had to be kinder to myself, give myself the time to recover, and resign myself to the fact that it was all going to take TIME. Family and friends were amazing, my job very supportive. I know I am incredibly lucky.

I returned back to work gradually (on small hours) after 8 months. It took almost a year and a half to return to a full day’s work.

I am aiming for a better work/life balance now. I work alongside a colleague who is also incredibly supportive.

It will be two years in February 2018. I still have appointments and scans (but less consultants! ;).

There are side effects - short term memory loss, not feeling sharp, can’t remember words sometimes, words get jumbled, occasional/popping pain in my ear, pain behind my right eye (after the Grandenigo Syndrome)

"Life is precious and can change in an instant."

It has gotten better though. As time goes on there are days I feel more on point and others days I'm frustrated again. Up and down I guess. But I'm learning I've more ups than downs :) and I re-group, talk it through.

The doctors are keeping a good eye on me and the "thing" is still in my ear. It's stable and they don’t think it’s a cholesteatoma. Again, some aftermath from the meningitis.

My aim now is getting the balance better in my life. Yes we all need to work, but not 12 hour days and at 200 miles an hour!

That progress, although pain stakingly slow, does happen. So celebrate the small leaps, be kinder on yourself and take solace that in my instance things did get better-although SLOWLY.

Life is precious and can change in an instant. x

Jennifer Kinsella
November 2017