Rachel's story

28th February 2022

Rachel tells us her meningitis story and how getting involved with our Believe & Achieve programme gave her a new sense of determination and direction

Rachel viral meningitis case study - Believe & Achieve B&A

“I was working at a nursery during my gap year and between January and March 2017 I was almost non-stop vomiting, as I seemed to get virus after virus. I felt like my immune system was very low. 

“I had the beginnings of a migraine one evening. My mum had friends over who were noisy, so I assumed it was due to the noise. I went to bed to sleep it off. I woke up in the early hours of the morning with extreme head pain and I knew something wasn’t right. I tried to move to get help, but I couldn’t stand the pain. I tried to look at my phone to call for help and I couldn’t stand the light. I then tried to speak to ask Google Assistant to call for help but again I couldn’t.

“After what felt like a long time I managed to get out of bed and I crawled along the landing to get help from my family. Luckily my mum was there. She sat with me 'til I could move and the pain eventually subsided. She asked me to try and go back to sleep and said we would go to A&E the next day.

“We went to A&E a couple of hours later. When the doctor saw me, we asked if it could be meningitis, as Google had shown I had all of the symptoms. The doctor said people with meningitis are usually visibly in more pain than I seemed to be and that it was likely I just had a virus. He told me to go home to rest. I had the impression he was quite dismissive of my concerns.

Diagnosis

“The next day I couldn’t walk. I was vomiting and I was in extreme pain again. We went to an emergency doctor appointment and the doctor assessed me and said it was very likely to be meningitis as I had all of the symptoms. She was shocked I was turned away from the hospital. She said she was going to write a letter of complaint on our behalf to investigate why I wasn’t diagnosed and that I needed an ambulance. Because my mum had her car though we were sent to ambulatory services at the hospital. 

“At the hospital, they gave me an IV with some kind of pain relief and antibiotics. They explained I needed a lumbar puncture to test for meningitis. During the procedure I fainted with the needle still in my back. Luckily the doctor grabbed me before it caused any damage. Another doctor helped so I was able to lie down during the procedure to prevent fainting again.

“The doctors explained I had viral meningitis and that I needed to stay in hospital until my vital signs were normal and I had some strength back. I was accidentally given an overdose on the IV and began fitting. As a result, I had to have blood tests at regular intervals through the night in my wrist and ankle. 

“The next day my vitals appeared normal. The doctor asked if anybody would be at home to look after me and my mum explained she could have three days off work. The doctor said that was okay as I should be absolutely fine by then. As I had someone at home to monitor me, I was discharged.

After-effects

“I was wheeled to the car and helped in as I couldn’t stand up. Once in the car I got very emotional as I had time to think about what had happened. When we were home I still couldn’t stand, but thankfully my dad arrived to carry me into the house onto the sofa. 

“I expected that I would be fine within three days as told by the doctor, but during the weeks that followed I had very little strength and couldn’t wash or dress myself. It took two weeks to make it off the sofa and be able to crawl upstairs to the bedroom. It took three weeks to be able to wash myself. I was fortunate that my grandmother was able to come every day to feed me and support me.

“I felt very concerned as I was told I should be fine, I thought something was wrong with me and that I just needed to be positive and ‘get on with it’ as I should be okay by now.

My main issues 

“My main issues were a lack of physical strength and a lack of memory – I constantly forgot what I was saying and ended up stuttering. I constantly lost my train of thought. I also had a lack of concentration. I couldn’t take in what people around me were saying and would get headaches when I tried to ‘think straight’ or concentrate for long periods.

“My key memories and feelings from this time are of extreme frustration, that I could do this before and why can’t I now? I was feeling useless and worthless and being very hard on myself. After all, it was only VIRAL meningitis, I can’t believe I forgot that or couldn’t do that.

“As soon as I could walk and felt mentally able (after two months) I tried to return to work as I thought I SHOULD be fine. I tried to work at McDonald’s (I already held a zero-hour contract with them.) I explained I had meningitis and would need to work less hours. I also explained I was struggling with strength and memory. I returned doing two five-hour shifts/week. After each one I was exhausted and slept constantly until the next one. The treatment I got was appalling but at the time I thought it was justified.

“Despite explaining I couldn’t lift them safely I had to cook fries. I was covered with oil burns as I had to drop the fryer in the oil as I was too weak to lower it in. Despite explaining I couldn’t concentrate I was asked to work on the till and regularly struggled to count change and input the order correctly. I was told they would sack me if I couldn’t work more than five hours as I was no use to them.

“I also struggled to learn to drive. During my first two tests I drove the wrong way around a roundabout as I couldn’t remember which way to go. Once I passed I once turned the wrong way towards oncoming traffic as I couldn’t think which side of the road to drive on. I also once forgot how to get home from work – a journey I did every day. I had to pull over and Google it. I was only one third of a mile away.

“I tried to walk to the park at the end of the street and back. I walked there, but couldn’t walk back as my legs just gave way and I had to sit on the ground. I had to call a taxi to go home and felt ridiculous as I could still see my home. The taxi company came but thought I was pranking them. They were very supportive and helped me in the car when they realised I couldn’t move and even waived the charge.

Recovery

“After identifying that I needed help and struggling with basic employment (I was training to be a teacher and thought how can I do this when I can’t even work at McDonald’s) I decided to contact Meningitis Now. I met up with Becky in a local Starbucks and was told about Believe & Achieve and about the services I could be offered including coaching and counselling. What has stuck with me is that Becky told me that nearly everyone she meets complains of the same issues (concentration, memory, exhaustion, weakness) including people with viral meningitis. 

“This had a big impact on me as I thought for the first time that what I had been experiencing is normal and I’m not alone.

Goal setting

“Immediately after the meeting with Becky I felt a renewed sense of determination. I set myself some short- and long-term goals. These were:

  • To be able to run 10k again. I’d start by walking to the end of the street and gradually increase the distance.
  • To study my PGCE and work successfully as a teacher, starting by brain training and improving my confidence.
  • To find techniques that work for me to improve my memory and concentration.
  • And, most importantly, to be happy and confident again.

Coaching

“The coaching I had was absolutely fantastic in helping me to work towards my goals. My coach (Sue) came to my house and gave me brilliant tools, techniques and support as I was worked through my recovery. My confidence increased, I had techniques to help me study and mindfulness exercises to improve my mental health.

Believe & Achieve

“Through Believe & Achieve I have met people who understand me and what I am experiencing. I have had both practical support at events I have attended but also just a platform to have fun and feel relaxed.

“I have attended events such as a Centre Parcs residential and received support related to studying; employment rights; physical exercise; anxiety and mental health; medical information and support; and creativity – writing, art, painting and mindfulness.

“My favourite memory was heading down south for the Centre Parcs residential, feeling very nervous. Due to my memory, I got very lost and confused and struggled to remember where to meet. The next day we all arranged to meet at a certain point, despite walking together none of us could remember the way and we got lost. We all laughed and joked about our memories and about how we are all struggling together. Every time I forgot something after this I remembered that moment and felt better as I knew I wasn’t alone with this issue.

Now

“I am working my dream job as a teacher, after overcoming a lot of issues and having a lot of setbacks along the way. I can drive safely and I feel more confident in other aspects of my life.

“Every time I make a mistake, I focus on what I CAN do and not just on what I CAN’T do. This makes me much more relaxed and happier.

“I still can’t run 10k but I have achieved 5k and continue to work towards my goal.

Advice

“My advice would be don’t be afraid to tell employers/friends/driving instructors or anyone about your issues. Own it and explain your needs and what they can help you with.

“Don’t allow anyone to disrespect you or treat you differently. You have a right to be treated with respect and are equal to others.

“Also, it’s okay to not be okay – despite what doctors may say, recovery is a process. You are an individual and need to do things in your own time.

“And, most importantly, meningitis will not stop you achieving your goals.”

Find out more about Believe & Achieve here.

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