3 months in

[Newnham1]

Good morning !Now just over 3 months into my husband's meningitis journey.

He is now in a rehabilitation ward and doing well with mobility and moving forwards with personal care.

This is great news as he is where he needs to be, and getting the right help but does remain very very confused at times( what he ate, who was in to visit, the fact that he is not at work etc)

The staff keep saying this is early days and that he should progress, but of course they don't really give any any answers or guarantees.

I'm so worried that I won't really get him back, I can't always see the progress he has made as it's overshadowed by the confusion and of course I'm still affected by all the horrible stuff said at the beginning about prognosis, disability, severe infection etc.

I'm.back at work and struggling to hold it together. Has anyone got experience of on going confusion at this stage?

I'd welcome some advice.

Once again, thanks to all of you.

[Lidldidl]

good morning to you Newham, brave lady.

I can’t really give advice but only some personal experience. I’m 2+ years on from near fatal Meningitis, Was unable to go into rehab but my daughter & husband have cared for me & got me here today. I now have Cerebela Ataxia as a result, this is another huge challenge. The confusion (brain fog) clears but still shows up often. Memory is patchy. My husband (retired) & daughter have coped amazingly & their patience is unfaltering. I am gaining more independence & feel progress happening.

Try not to despair, it’s very hard I know - assuming you’re in UK you will has access to financial help & the ‘Meningitis Now’ charity have been a great help & inspiration to us. Please contact them via their website.

Wishing you strength & healing for hubby & sending a big hug. xx

[Newnham1 in reply to Lidldidl]

Thank you x

[Rob7970]

I am sorry to hear, my husband had West Nile Virus about 5 years ago, he was one of the unlucky ones who got very sick, he too was hospitalized, was a shell of his former self. Between the meningitis and encephalitis, I thought I was going to lose him. The good news is he did recover! It took time, and he will never be 100%, but he is working and even went back to playing hockey. He still has weakness on his left side as the virus killed nerves that don’t regenerate. He does work really hard to keep up his physical strength, but again, we are talking almost 5 years since he was diagnosed. The first year was tough, he could barely walk. He still has memory issues, but nothing that interferes with daily life. Hope this helps 🙏

[Newnham1 in reply to Rob7970]

Thanks so much for this...I can be patient, I just need to see a bit of light !It's been.overwhelming and at times, the confusion seems to be getting worse, not better.

Staff say he is doing well though but it's hard to keep going, so thanks xx

[sillysoup2]

We are now 9 weeks into treatment . Husband is very slowly regaining arm movement, some leg movement but not yet sitting or standing. He is talking clearly most of the time but has disoriented comments now and then which is concerning. He has periods of sleep throughout the day. Therapy has not yet been restarted due to lack of strength. PEG feeding tube should be removed in 2 weeks.We are doing range of motion exercises. Hoping confusion will diminish after seizure medication is stopped. It is hard to keep spirits up with slow progress and long days traveling to/from location and visiting. Thoughts of when/if he can come home and how future will proceed can be overwhelming.

[Newnham1 in reply to sillysoup2]

Thanks for your reply, and the update x

[Cryptococcal_Ninja]

As mentioned, every case will vary wildly. Once mine was finally diagnosed and treatment began I rebounded quickly, pretty much each day was better. Along the way it did feel like some days taking 2 steps fwd led to feeling thumped back 3 the next day. It's annoying how even the slightest bit of nerve damage can be so detrimental and often irreversible. The common thing mentioned by neurologists is the brain should continue to heal slowly for as much as 2-3 yrs post diagnosis and by that point it's about what you learn to live with. They tend to say any lingering side effects by year 4-5 will likely be permanent as the brain can only recover so much. I can agree as my recovery was impressive, but did slow down over time. Just make the most of what each day has to offer. It might bother family and friends to watch this sort of thing play out, but by far more involved for the person recovering.

[Newnham1 in reply to Cryptococcal_Ninja]

Thanks for your reply, Crypto, always wise advice from you and a timely reminder of what my husband is going through. He is aware of the confusion and it upsets him x