New member. Tracy : Hi. I'm Tracy. I'm 4... - Meningitis Now

Meningitis Now

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New member. Tracy

Trakylynn profile image
19 Replies

Hi. I'm Tracy. I'm 49 years old and had bacterial meningitis 12/2016 last month. Started the first week in December. All started with a sore throat and fatigue. Went to see 2 doctors visits and 1 urgent care visit. They all thought it was something else. On 12/18/16 my grown son had to break down my door to get to me as I was delusional. He threw called the paramedics. I didnt remember anything until 3 days later at the hospital. Stayed there 6 days then home intravenous meds for 10 days. Now I'm finally back to work full time but having fatigue and being light headed to where it affects my balance. I have anxiety issues too. Afraid I'm going to get sick alot of the time. That's my story. I'm glad to find a support site like this one. I could use it. Need to know that what is happening to me is normal from what I've survived.

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Trakylynn profile image
Trakylynn
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19 Replies

Hi Tracy and welcome. Wow, you are already working full time??? BM is really nasty and you can expect to get very tired so please make sure you look after yourself and get help if you need it. I still feel the effects and I had it in 2001. I had memory problems (retrograde amnesia) and some character changes ( hate noise and stress) I now work part time which is quite enough. I wish you loads of luck and come and chat here any time

Trakylynn profile image
Trakylynn in reply to

Thank you so much for sharing. I do get really tired so I take is easy when that happens. Listen to our bodies right :)

Blim profile image
Blim

Hi Tracy. Welcome. You are doing amazingly well. I had BM in 2012 and still only work part time. If you have the chance to read different stories here you'll see each one is different but tiredness is not uncommon. My balance is rubbish and I walk with two sticks, but it is improving with vestibular rehab (a type of physio). Meningitis Now have a great website with helpful fact sheets and also a help line number you can ring. They sent me some stuff when I got out of hospital as I had no idea of the long term effects. People on this forum are also lovely.

BM is really nasty so it's not surprising you might get a bit anxious. It must have been awful to be so unwell and on your own. Maybe it's worth talking to your GP about it - although people here have had mixed experiences as some GPs just don't get BM and think it's just like the flu, other GPS are really helpful. Mine referred me to a neuropsychologist, which I found a bit scary, but really helped me understand some of the impacts of the BM which in my case has left me with a brain injury.

I hope you find this site helpful

Best wishes

Blim

Trakylynn profile image
Trakylynn in reply to Blim

Thank you. Wow I will check into the neuropsycologist. The only thing the doctor told me was I will be fatigued for awhile.

Best wishes to you too

Cloudlover profile image
Cloudlover

Wow! I was in the hospital around the same time. Mine started after back surgeries and started having fever one night. Called my dr and he said to mee5him in the ER next morning. So after test I was immediately put in private room with Bacterial meningitis. I had never been so sick. I have no ideahow you can work right now. I can barely take a shower. God bless you sweetheart. There is a lot of help out there. I'm in USA. Are you in UK or here? Well I wanted to acknowledge you but have to stop for now. Cloudlover. Stay in touch to meningitis now

Trakylynn profile image
Trakylynn in reply to Cloudlover

Thank you. I'm in that US too

Cloudlover profile image
Cloudlover in reply to Trakylynn

Where at in the US?

Trakylynn profile image
Trakylynn in reply to Cloudlover

Washington state by Seattle.

Brandilane profile image
Brandilane in reply to Trakylynn

I am in Spokane-seems to be a problem around here lately-scary

Caz5 profile image
Caz5

Hello, you are doing really well to be back at work. I was ill with BM over Christmas 2015. Two things have helped me since; to stop saying I was tired and to name how I was feeling as neurological fatigue and a referral to the Community Neuro Rehab team (I'm in the UK).

The naming is important because everyone knows what 'tiredness' is but the fatigue felt after BM is so different. I think that this has certainly helped with my return to work. The CNRT were brilliant, I have had sessions with an occupational therapist and a psychologist which have helped me to understand what happened to my body and the after effects of BM. I was also invited to attend a fatigue management group which really helped too.

I've just remembered a third thing! The neurologist suggested using a brain training app to help with minor memory loss; I do this most days now and I like that I have been able to track my progress.

Good luck in your recovery xx

Cloudlover profile image
Cloudlover in reply to Caz5

Thanks for all your information. I haven't seen a neurologist nor have I been directed in that way. I'm going to call my infectious disease dr and see what she reccommends. I really need help and support here. I know its out there but my husband who does see a neurologist for his Parkinsons and I are both fatigued from the last 3 months of my surgeries and meningitis and dr visits and hospital visits that neither one of us can get motivated. Plus its been very cold rainy and yuky here in KCMO USA so that makes it harder. I might give his neurologist a call. I'm ready to get something scheduled and get some help. Again thanks for all your help out there. I'm definitely listening. Cloudlover

sorba profile image
sorba

I had BM about 26 years ago when I was about the same age as you. I think the after effects you describe are pretty typical but can fade in time. Probably best advice is to be easy on yourself, try and have a healthy lifestyle and get the understanding of friends and family. Hope you feel better soon Sorba

Trakylynn profile image
Trakylynn in reply to sorba

Thank you so much.

Runnerma profile image
Runnerma

Hi Tracy. Your story sounds all too familiar to me. Take care of yourself & take it slow. One year later & I am still have headaches, hearing loss and difficulty walking. Stress makes them worse. Hang in there!

Trakylynn profile image
Trakylynn in reply to Runnerma

Thank you very much

sdjohnson231 profile image
sdjohnson231

Tracy, I, too, am surprised that you are back to work full time. I was not allowed to go back to work for 6 months, and even then, had residual side effects like headaches, extreme fatigue, confusion, and loss of balance. I would question your PCP about it. Your healing continues to take place, but only when you are at rest. Working full time is truly not helping your body or brain right now. Best wishes on your recovery process.

Dodgepot55 profile image
Dodgepot55

Hi Tracy...I contracted BM back in June of last year. I live in the U.K. When reading your experience, it appeared so very similar to mine. I came home from my shift work at LGW on the Tuesday evening, feeling quite normal. However, when I woke up the following morning I felt distinctly unwell, though nothing major. Went back to bed and remembered nothing else until the Saturday morning, when my sister and nephew were banging at the door. They, too, had to break my front door down, whereupon they found me in a confused and unwell state. The doctor and paramedics were called and I ended up in hospital for two weeks, hooked up to IV drips and all sorts of other tubes etc. was told that if my family hadn't banged that door down, I would have been dead in about 6 hours!!

On a rather amusing note, when the consultant asked me where I thought I was, I replied.."Yep, I'm in Sydney, Australia of course..in a hospital overlooking Bondi Beach"!! (I wish!)

Anyways, I was off work for four months and experienced similar stuff to yourself..extreme fatigue, could only make it to the bathroom with a Zimmer frame, constant headaches, memory loss, slight hearing loss etc., etc. But it was the fatigue that got me more than anything., along with the horrifying thought I may never walk properly again.

Tracy, whatever you do..Don't give up. Stay Positive, even when it's the last thing you feel like doing. I returned to work after four months and can report that pretty much all my symptoms have gone. I have my energy back and am just very thankful to be alive. I appreciate many are not so fortunate on their road to recovery as I have been. (my thoughts and prayers are with But you will get through this. Believe it. Take care.

Roger

(age 61) but feel 37 still..mostly!!)😀

Trakylynn profile image
Trakylynn in reply to Dodgepot55

Thank you so much for your encouraging story. I'm happy you bounced back. When I was in my delusional state I was told I didn't like President Trump too much. Lol

Brandilane profile image
Brandilane

It seems everyone is different but for me, Promethazine (anti nausea) was my best friend for months. My stomach is definitely more sensitive still and it's been almost 2 yrs

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