Sheila Lee's story

I was 73 years old when I was diagnosed with group B strep meningitis.

I had just started going with my husband to his proton therapy appointments. I seemed absolutely fine while staying with a friend of the family. We laughed and talked every night, and then I told her my neck was really bothering me. She thought it was the pillow, so gave me another to try. It wasn’t much better, and the pain in my neck during the night got so bad I started putting pain ointment on it. I had a horrible headache, but I’ve always suffered from them, as well as migraines. I started shaking and freezing and didn’t know why. I then vomited for some time and collapsed in bed. I slept throughout the next day, and then we drove home for the weekend since we lived three hours away.

 

Initial symptoms and first hospital visit

I got home and was talking and seemed somewhat better, I thought. The next day we decided to go to the A&E department affiliated with our main hospital. I told the doctor what I had been through and that my neck was in a lot of pain. For some reason, I asked him if I could have meningitis. He didn’t think so and said they couldn’t do a spinal tap there, so I could go home or go to the main A&E. I went home.

My husband left the next day to get to his proton treatment, and my daughter stayed with me. The next morning I was not making sense and couldn’t get out of bed. She called 999, and I have no memory of being put in an ambulance. I was screaming with back pain. My daughter did tell them that I thought I had meningitis, so off we went and she followed. I had a spinal tap after I arrived. It was a horrible experience with excruciating back pain.

 

Diagnosis and intensive care

I found out I was put on penicillin and then in ICU for a couple of weeks. I was on IV antibiotics while there and came very close to dying. I hallucinated, and my heart rate went down to 28. They were just about ready to put in a temporary pacemaker, but my numbers improved slightly.

After two weeks, I was transported by ambulance to a rehabilitation facility in the same city where my husband was. It is rated one of the best.

 

Recovery and ongoing effects

After two weeks in rehab, which was so painful but so good for me, I moved in with another daughter who lived in the area. I was on IV antibiotics twice a day for two months. We have angel daughters.

It took me some time to walk without a walker and to stand up straight. I know this is long.

I continued to keep moving: walking, physiotherapy for five months, going to the gym, and gyro kinesis/Pilates, which has helped me so much. I have nerve damage, arthritis, severe tinnitus, hearing loss, and blurry vision in one eye.

 

Life after meningitis

I have found that no one seems to understand that meningitis aftermath continues even though the infection is gone. I’m very grateful to be here writing this. I suffered from PTSD for quite a while and realise now how fortunate I am. I continue to move every day and know that’s the best medicine for me now. That is my story.

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