Bacterial Meningitis - My story

[Jane425]

I contracted bacterial meningitis as the result of an ear infection. Scans revealed that I had a defect in the tegmen typani and the bacteria had passed through this hole to my brain. I was in hospital for 12 days treating the meningitis and undergoing surgery to repair the defect and was discharged unable to walk unaided due to balance problems.

I appreciate that everyone has different experiences, starting points on the road to recovery, levels of fitness but I hope that by sharing my story I will help someone who is trying to overcome this life changing infection.

I am an occupational therapist so using my professional knowledge I knew that physically my leg muscles which had wasted during my hospitalisation were not helping my balance issues. Walking was the answer – friends and family rallied round to come and take me out for increasingly longer walks with decreasing levels of physical support. Exhausted I slept a lot as well.

From my mental well-being perspective, I realised how quickly the things that I valued in life and the roles that I had e.g. wife, grandmother, member of swimming club etc could be taken away from me. I couldn’t bear the thought of not being able to be a proper grandmother to my first grandchild who was born 3 days after I was discharged. The thought of losing these things motivated me to do whatever it took to get better. I found different ways to do things so that I could do activities of daily living e.g. online shopping instead of going to the shops, opening the cupboard under the hob so that I could sit on a stool to cook with my knees in the cupboard, having a chair in front of the washing machine so I could load it without falling into it!

My GP referred me to a specialist physiotherapist who used vestibular rehabilitation exercises to retrain my brain to ‘balance’ me. She said that it was important to start the exercises as soon as possible after the acute phase of the meningitis infection and that you needed to do activities to ‘upset your brain’ so that it knew there was a problem and it could set about making new pathways to fix it. She told me that the exercises would make me feel worse first and that they would make me very tired which they did. I would be given a set of exercises and for the first 2 weeks found them also impossible to do and felt nauseous doing them but persisted and by the third week had perfected them and the nausea had gone. Then I would be given a new set of exercises and the process, nausea and tiredness started again.

Nine months on and I am virtually independent again although not perfect and still prone to excessive tiredness – I can go for 5 miles walks, swim 60 lengths, work with some adjustments to my work pattern, drive and babysit!

[ignoreit]

After I was finally able to walk, still in the hospital, I had to use a walker. On my hospital release day, my doctor told me NOT to use a walker...not to even have one in my apartment because I would learn to depend on it. It was rough going at first...I had to hold on to furniture, in order to leave my sofa. About a month later, I could walk a little without holding on to furniture...but I shuffled along like a 90 yr old. (I was 33.)

Six months later, I returned to work. Had to wear white (no dyes) oversized socks and sandals because my toe area still had terrible pain.

It took about 10 years but I was finally able to tolerate a closed toe shoe. At work, I NEVER talked about the pain. Never. Who would promote a sad, hurting person? Companies want to be represented by healthy, enthusiastic, competent people. Forty years later, I STILL try to ignore the foot pain. What are our choices? We can constantly tell others around us that we're in pain...or we can fight through it...and pretend to be pain-free. Our choice.

[misswinky34 in reply to ignoreit]

ignore it. I really feel for you☹ how awful to hide pain like that. For such a long time.. ❤ hugs. X

[sdjohnson231]

Jane, thank you for "your" story! Being an occupational therapist put you in an excellent position to know what you needed to do to get back "on track" to a near normal life. You are fortunate in that respect. Many of us depend on our doctors to lead the way for us, and too often, they disappoint us! My bacterial meningitis was also caused from an ear infection. I, too, struggled with balance issues following discharge. However, it took about a year and a half before I found a neurologist who recommended I see a physical therapist to help me with the balance issues! I wish I had known then what I know now! Hopefully your story will help others ask for help sooner, rather than later! It really does make a difference! Congratulations on being a grandma! It's just the best!

[ICUBMcoma]

Hi Jane, did it help that you were in the field? OT / PT/ Aqua Therapy has been so helpful.

I came down with Baterial Meningitis on Christmas Day 2016. I have type 2 diabetes, a history of Bacterial MRSA, ear infection , sinus infection and so the Bacterial Meningitis just floated right on in to my Blood Stream. Went into a diabetic comatose incoherent state on the drive home from my sisters. When we got home I was unresponsive then my family called 911 and I was as rushed to the hospital not consciously present at all.

In that time they poked, prodded mir’d, ctscans, X-rays, lumbar puncture, blood work, etc etc ....

I was kept into a medically induced comatose state from 12/26/2016- 1/4/2017 in the ICU; Antibiotics, etc etc & so on & so on , I was on so many meds I don’t even know all of them. During the initial hospitalization, I was totally immobile. Which caused total muscular atrophy. Paralyzed from the neck down.

Finally released on January 17, 2017 to a rehab by 2nd ambulance that lasted all of 1 & 1/2 days, second morning COPD attack low lung function then Rushed to a third 3rd ambulance which brought me to a Second Hospital ER on oxygen and later that day intebated (spelling?) for a second time for another 12 day stay from January 19, - January 30, 2017 at 7pm for a 4th Ambulence ride back to Kessler instute Of Rehabilitation of West Orange , New Jersey, ( you know where Christopher Reeves AKA, “Superman” was treated). Where I received the Most amazing care.

During all of this I had no Muscular Control at ALL. Couldn’t feed myself, move, feel anything. Paralyitic Neuropathy. The list goes on and on. I was at Kessler from January 30th.2017 - February 24,2017. For acute care and IV Antibiotics. When via Ambulet I was transferred to a sub-acute care center from February 24,2017-April 13,2017.

When I was finally released from Hospital type settings and actually had an uninterrupted night sleep, after 15 weeks; about 105 days. To Hell and Back and

back to hell and back.

It has now been a little over 6 months since I’ve been home out of all of the Hospitals!!

Recovering has its ups and downs, a continuing roller coaster ride, Meningitis is a gift. That just keeps giving! I’m almost 10 Months into this journey!! The Neuropathy in my legs and feet has made driving safely an impossible task right now complete with drop foot requiring braces. In about 2 months it will be

Christmas again an entire year since initial onset is a scary proposition,

will it happen again?

Is the Bacterial Meningitis is just waiting laying dormant, waiting too strike again? Irrational fear, maybe! But you never know! 😊❤️. It never ever crossed my mind that I was that susceptible to getting such a devistating illness and it’s residual after shocks.

I still have balance issues, confusions , Neuropathy, dropfoot, I’m 70 % Back, most days, some days I just can’t move. Now that the summer is over. Am I going to back slide? Etc etc etc etc

Thanks for listening 👂😊❤️Rebecca