just diagnosed : been here for 4days with... - Meningitis Now

Meningitis Now
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just diagnosed

hsa18
hsa18
19 Replies

been here for 4days with viral meningitis I know I'm not alone but feeling pretty alone with all the staff masked up and not tryingvto be any longer than 30 seconds with me

19 Replies
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IrisRose

Try to use this time to relax, sleep and take care of yourself. X

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Chri5ti

Don't let them bother you. If you are confirmed VM why are they still masked? Once it is confirmed VM, not BM, they shouldn't need the masks? But I would just enjoy the quiet time. Take the time to rest and heal. Watch some TV or get a good book.

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July23
July23
in reply to Chri5ti

I couldn't watch TV for 2 weeks or concentrate to read but headphones and audio were my escape route !

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irene123
irene123
in reply to Chri5ti

I agree. With me they were gowned up thinking it was Bacterial. Two days later they were ungowned, as it was found to be Viral and supposedly not contagious.

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Veba
Veba
in reply to Chri5ti

Exactly. It's being ridiculous in my view. Some people in the medical profession are far too precious.

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Pinkunicorn125

Hey...I'm sorry u are feeling so alone. I know what it feels like. I had bacterial meningitis last June and I was in a coma for 3 days. Even though I had family with me all the time I still felt alone because nobody knew what I felt like on the inside. I was dealing with so much physically and emotionally. It was definitely a long road to recovery but u do get better so don't lose hope. Praying for you and your recovery 😊

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Starbrite28

I know how you feel. Sorry you're going through this. Try to use this time to focus on you and see if you can get some friends or family to come. They will be fine if they are cautious. Hang in there!

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Eli_Acct

Wow, I felt the same way! Spent 5 days in the hospital with viral meningitis and so grateful to the few that actually spoke to me and didn't treat me like some kind of infection.

Like others here are saying, try to sleep. If you're like me, even though I try to rest at home, I have kids and a husband that always need something and there's truly never any rest. I got viral meningitis September 1st, 2019 and I still have some after-effects. Ask as many questions as you can while you are there and have them schedule follow-ups with specialists or neurologists while you are still there. I just scheduled my appointment with a neurologist and it is 3 months out. Good luck...

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July23
July23
in reply to Eli_Acct

Are you in the Uk ? I am still suffering with memory / concentration etc 4 months post VM. Not back to work but think it's unlikely I will see a neurologist as they is no treatment as far as I am aware.

Meningitis Now have been my support.

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Eli_Acct
Eli_Acct
in reply to July23

I’m in the USA, and meningitis now and others have been very supportive. I’m in a befriender thing where they put me in touch with someone with similar side effects and we just talk. It’s been huge because before meningitis now, I thought I was going crazy but now I know I’m not alone.

Yeah, as far as I know there’s no cure or anything but I want to know if there’s any damage, if there is... if it’s going to heal or not. I wanna know so that I either make peace with my current state or continue to have hope that things will be better.

I’ve been working full time ... it’s not easy but luckily I have an office job and I take it very easily! I’m super slow (I guess because of the concentration and memory issues) but oh well, people will just have to get over it.

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Princess123456

No matter what, always have HOPE!! It’s a long journey before you will begin to feel a little “normal” but have hope.

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Veba
Veba
in reply to July23

Absolutely no treatment only management of the pain and nausea and symptoms.

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Tpeeler

I got diagnosed with vm October 26, 2019. I’m currently home but to weak to even shower. This is an extremely scary feeling. I have nothing to offer but to tell you your not alone.

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Eli_Acct
Eli_Acct
in reply to Tpeeler

Wow, I am so sorry... take it easy if you can. I'm married and with kids, and its never a restful moment. So if you can, get as much rest. I got VM September 1, 2019 and there are days I feel so weak and tired. Evidently, this is all very normal.

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July23
July23
in reply to Tpeeler

I share your feelings. Its very up.and diwn on the path to recovery. Slow and steady is the only way.

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July23

Back at the and of July 2019 I spent 8 days in hospital with VM, mostly being barrier nursed (in isolation).

I developed Mumps 24 hours after diagnosis of VM so it is assumed that was the causative organism.

Mumps is not treatable so it is not one of the viruses that they look for in CSF. However it is contagious, so I was I isolation.

I know just how you feel in there alone, but the up side is peace and quiet and your own bathroom! Those are a privileges not to be underrated!

I stayed sane by online contact with friends and the radio / audio books / podcasts for company. Some staff to make you feel like your are an inconvienience, but try to ignore them or it can get you down. You are the patient and the one who matters.

It will be good to get home, but be prepared that you will need lots of help . For about a month I existed between bed and sofa, with a few little walks out.

It takes time to get back to the wider world.

Take it very steady. This is a major illness even if it isnt treated as such by medical / nursing staff.

Be kind to yourself. You will improve.

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Veba

That's a bit of an overkill on their behalf as viral meningitis itself is not contagious. I do hope they know it. You can have visitors too if you feel up to it. I never do as I usually throw up a lot and am in so much pain and the lights kill. Dark room, quiet, fluids , pain relief (strong) and nausea injections. Then time. Photophobia is a part of it.

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Veba

Over 30 years and the symptoms keep rolling in. It's an extremely unlucky disease to contract in my view. It ruins your life long term so you just have to modify your lifestyle as the autoimmune and nerve pain arrive. Many things inexplicable I just ignore now and think, Oh well! Laughing a lot and keeping busy helps. Being a useful member of the world also is very therapeutic. Yep, sometimes feeling sorry for yourself is okay too. Anyone who denies you this, flick them outta your life.

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Kattp

Remember that well.I was very upset when no one seemed to want to be near me.Very lucky though as I had one doctor who visited me every day and would even sit down and ask me how I was and if I had any questions.Hope your having more company now and are on the mend.

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