I’ve had the opportunity to chat to Meg Middleton who, in 2010, contracted meningitis. Having met Meg in childhood, I was as shocked as everybody else at the dramatic twist her life took. For a while it seemed the whole of York was waiting with baited breath as it was unknown whether she would pull through. But she did. And now (nearly) four years on, she’s kindly allowed me to interview her on her illness, recovery, fundraising and plans for the future.
Rosie Watterson: Let me just start by saying thank you for taking the time to talk to me. What shocked me about your illness was how quickly it happened. From the outside, it seemed as though one day you were a happy, normal 18 year old, and then the next you were in hospital and very unwell. Did it feel like that for you and your family? What do you remember about becoming ill?
Meg Middleton: No problem, it’s always great chatting to you!
I’d actually been ill for few days with a headache, feeling really achy, being sick and having next to no appetite but I didn’t think anything of it as I thought it was flu. The last thing I remember was the day before I collapsed and I remember I felt so crappy, the pain in my head and body had got steadily worse to the point where I was having difficulty walking and holding things (I broke quite a few glasses!)
RW: I don’t really know a lot about meningitis – could you tell me a little bit about it?
MM: Meningitis quite literally means inflammation (itis) of the membrane (meninges) which surrounds the brain and spinal cord.
The type of meningitis I had was bacterial meningococcal meningitis type B which is one of the most common types of meningitis (not a great claim to fame I’ll be honest!). There are loads of different types including bacterial, viral and parasitical; I was in hospital with someone who got a really rare form of bacterial called Salmonellae meningitis which he got through a tooth!
RW: How long were you hospitalised for?
MM: Overall I was in hospital around 9 months; 7 weeks in Hull royal infirmary, 9 weeks in York district hospital & 5 months in Pinderfields hospital.
RW: I think a lot of people overlook how long it takes to recover from something like that. Can you tell me about some of the milestones you’ve passed in your recovery? What’s been the hardest thing to deal with? And how have your family/ close friends supported you?
MM: I certainly overlooked the recovery time. I guess the biggest thing I’ve managed to do is survive in the first place! The survival rate for well-established meningitis (like I had when it was found) is very small. I had a lot of damage and also the surgery I had was unusual so it was an uphill battle from the start! Learning how to breathe by myself was so difficult; the faith you have to put in your body after it’s let you down so massively, it was really hard. Also having to re-teach myself how to do basic things like eating and sitting up was a massive drain. Mainly because I’m impatient.
My friends and family have mainly supported me by pissing me off so much I HAVE to learn how to lift my arms so I can throw things at them! They were there to itch my nose when I couldn’t, which is very important! But seriously, I would have given up and lost hope if they hadn’t religiously come in and cheered me up.
RW: I know from being a care assistant and working in the community, that often carers and service users don’t see eye-to-eye. Can you tell me a little bit about what it’s been like with carers? I think there can often be an “I know best” attitude from carers, which I’m sure you found delightful…
MM: Like most jobs there are always a few idiots who ruin it for everyone! I’ve had some awful carers who’ve treated me like dirt BUT I’ve also had some FANTASTIC carers who I’ve become really close to. Being a community carer is such an odd job as you’re going to lots of people from difference age groups, with different health problems and different levels of understanding and communication, so it always blows my mind when I have carers come in and talk to me like I’m 2! They really don’t like it when I do it back to them! (I had a carer recently who patted me on my head, by god did she get an earful!)
RW: How are you feeling at the moment? I think for a while you had to take medication which made you unwell, which must have been really tough.
MM: I’m still on a lot of medication for pain and spasms, but it’s a hell of a lot less than I was on. I’ve got rid of the really intense stuff that was making me unable to function and I’m actually in the process of getting off the rest of my tablets, so fingers crossed!
RW: All while this was happening, you were campaigning for meningitis awareness and fundraising. That’s really impressive! Can you tell me a little bit about that?
MM: I have some wonderful friends and family who have been doing so much fundraising! We had a group walk the Coast to Coast last year (they raised nearly £3500!!) who are hoping to do some more stuff in the future. We’ve also had a few charity auctions taking place which has brought in a fair bit of money. All the money raised is split between Meningitis Now, who are the main charity in the UK for supporting sufferers and their families, and Meningitis Research Foundation who are solely concerned with finding a cure for the many types of meningitis. There’s loads of information on their websites for fundraising ideas!
RW: So in regards to the future, what are your plans? I know you went back to college and did your A Levels, are you planning on going into higher education? Do you have a career in mind?
MM: I’m currently back at college studying social sciences with the aim of eventually getting my PhD in forensic psychology or neuropsychology.
RW: Do you think your experience changed the direction your life was going in? Are you interested in things now that you weren’t before becoming ill?
MM: Most definitely! Before getting ill I wanted to go into drama therapy (using drama as a tool for people with learning difficulties to express themselves) but now I’m more into the links between what we think and our brain’s processes. I also have a completely different view of how the world works – it would appear nearly dying completely changes your priorities in life!
RW: You’ve recently moved out into your own house (I think?), which must be great! How have you found house-hunting?
MM: I’m still in the process of moving but I’m nearly in, [she laughs, triumphantly]. It’s fantastic, I can’t wait to be living on my own; I love my parents but I never wanted to be 22 and living at home. House hunting was a NIGHTMARE; trying to find somewhere that had the space I needed with potential to expanded, and be easy for carers, doctors and family was so difficult. However, I completely lucked out with my new property and it’s absolutely beautiful! I can’t wait to make it my home.
RW: Do you have anything to say to people who are in long-term recovery from illnesses (like meningitis) or whose family are? What advice can you give to someone starting out on the road to recovery?
MM: My advice to people in recovery is don’t beat yourself up for having bad days. I’ve had so many bad days where just waking up was a struggle and I was really hard on myself for it. Also, don’t forget that your friends and family love you more than you know; even at your worst they love you! I’d also say take time out to not worry about physio or doctors or anything to do with your illness. In 2012 I got a cat called Aurora (best decision of my life by the way) and there’s nothing I love more than curling up with her, a glass of wine and a book.
To people with family members in recovery, just being there is the best support in the world! On the 1st anniversary of me getting ill my wonderful best friends teamed up with my family to throw a party and I’ve never felt more loved. Also please understand that recovering after an illness like meningitis is hard, and when someone gets angry or upset it’s never at you, it’s at the situation they’re in, and sometimes they feel guilty for getting ill and putting you through it too.
RW: Is there anything I haven’t touched upon that you’d like to add?
MM: I’d just like to point out that the rash commonly thought to be meningitis isn’t actually meningitis, it’s septicaemia (a blood poisoning), so don’t always rely on there being a rash! Also the age group most likely to get meningitis after toddlers is 16-24 year olds, so be vigilant. And as I mentioned earlier, check out Meningitis Now‘s website for information on meningitis, fundraising and events!
RW: Well thanks again Meg, I wish you and your family all the best.
MM: No problem and same to you!