bacterial meningitis

[radin]

hi this summer i had bacterial meningitis.It was a terrible thing, and it all started with otitis that doctors in my town couldn't find.When I was in hospital I was in a very bad condition I had headache neck pain fever and I was almost in coma.My treatment lasted 2 months.Now 6 months after meningitis I feel kinda weird I can't concentrate forget I feel headache tinnitus I don't know what to do. Is there anyone who feels this way and do you have any advice.

[bobbyvere Volunteer]

Your ongoing symptoms are experiences that are reported over and over again. The best advice you can get us in the Meningitis Now helpline. They will give you sound advice and be very reassuring.

BV

[Sprout]

I agree with bobbyvere and would add if you've not had one, try to get an MRI done

[Princess123456]

I am so sorry you are going through the “after affects” of Meningitis. I had Meningitis in July of 2019and I’m just beginning to feel like I’m going to be okay. Take one day at a time. Even now, some days are not so good with my gait, but I keep going because I see an improvement. I think we want so badly to get back to our regular routine, we try to push ourselves, thinking we will get better as if we have a cold or flu. I prayed and other people were praying for me. My faith brought me to where I am now. Give yourself TIME!!! It won’t happen overnight but you will overcome. You might have to understand what a “new normal” is for you but you will be okay.

[welsheuphnaty in reply to Princess123456]

Yes I can relate to that" new normal". Having had no guidance whatsoever I am struggling mentally with this too. I find that most find it hard to believe that I am still not having the energy to do a lot. If I don't get the 12-14 hours sleep my body seems to need , perhaps have half of it in a 24 hour period, it is like I have travel sickness/ room spin and only lying in a dark room helps. It is nearly 6 months since I had it.

With the doctor in the hospital telling me that I will be back to normal within 2 weeks of me finishing my meropenem antibiotics, I just assumed that is what would happen. You feel like " how long with this last".

My new normal is much much MUCH less than I used to do. Two weeks before I was walking up Snowdon. Something I have done a few times. Long walks , running marathons, half marathons. Getting in the car and driving for 2-3 hours at the drop of a hat. Cant do that now, unless I have a good few days to recover. Two hours maths tutoring is about my limit. Anything more than that and my brain is literally cotton wool And I need a good couple of hours extra rest on my eyes and head the next day. Think I may do a post about the mental support needed. Everything is just different. Some have a recovery and are back to how they were. They are the lucky ones. Some recover and have limbs removed. Some recover but have hidden things going on and unfortunately we do not know how long that will last for. That is the hard thing. So living each day as a day. living each hour and assessing " how do I feel? If I am on 30% battery I need to rest, and build up some energy to do something tomorrow maybe"

Take care and keep posting xx

[menchild in reply to welsheuphnaty]

I don't know if I would call it 'new' normal. Nothing is normal. Life has become unpredictable. I have a few days where I feel 'normal' - meaning no weird feelings in my head, headache, light headedness, tiredness, heavy legs with tingly kind of numb feelings, tingling in arms and fingers. Then I think ok, I am on the mend and start doing things with no bad consequences until all of a sudden I get a headache and then downhill from there. I have a new manta: "I MUST PACE MYSELF". If I feel 'normal' I must still rest and go easy and not do too much. It is frustrating as hell as I live alone and there is no one to help. The deep cleaning jobs are piling up, I can only do the basic surface cleaning. When I go through bad days I feel like I will have a stroke and die, so I ask family and friends to send me messages every hour to check on me. I have given up on the medical profession, it's a waste of time going to Doctors because they don't know what to do and just send me for tests that all come back fine! I changed one GP because she looked at me like I was a fraud making up a story in order to get government sickness benefits! It's been five and 1/2 months now. I know I have improved and can do a lot more than before, but it really comes down to I living one moment at a time and not being able to plan for the future, because I simply do not know how I will be. I have accepted that I may never fully get back to 'normal'. I have found a wonderful Bowen therapist and I have felt a whole lot better after having only 5 treatments over a couple of months. I started to have good days after the first treatment and now have a lot more good days, but I blow it myself by overdoing it cos I feel so good. "I MUST PACE MYSELF" hee hee! I am grateful to be alive, for without the modern medicine I would have died. Thank you everyone for being here, you have been such a great help with you sharing and helped me to understand that I wasn't crazy for the weird symptoms I was and still are having. At least they are less intense, no longer daily and I can bend my head down without disabling dizziness and headaches! It does get better but mostly slowly and REST REST REST helps a lot.

[welsheuphnaty in reply to menchild]

Oh bless you XXX I could have written those exact words easily. Must pace myself. Ha! It's knowing what pace to do I find and with no medical professional giving any guidance.

[menchild in reply to welsheuphnaty]

Ha ha my daughter suggested I go to GP n have her make a plan for my recovery! GP knows less than I do! The pace? I am still working that out too. I find that doing things for only 1/2 days works best at moment.

[Boneyhay]

I had same 17 years ago and still feel same as u know if not worse sorry to say

[Marcy67 in reply to Boneyhay]

so you live with cryptocaccus everyday?

[welsheuphnaty]

I think we just need to support each other as we get it. The normal I was referring to was the unpredictability. Expect the unexpected. We're not being lazy. We're adjusting to a body that is not the same inside. If only we could equate on what way. It's an unknown. And that is hard

[radin in reply to welsheuphnaty]

I think that nobody understands how I feel.I feel that I have no energy for anything.I lost lot of my friend because I am no longer the same person as before and I’m really depressed 😭

[MaryStuart]

Hi Radin, in September 2019, my pneumococal meningitis started like yours, with otitis, and if the ambulance had not arrived in time I would probably not be writing this. I have the same after effects, tinnitus, headaches, difficulty to concentrate, and these are just probably the main ones. The main thing to take into account is that we are lucky to be alive and try not to overdo when we feel better, just take one step at a time, to me more patient with myself is my ongoing goal for now. I wish you the best!