My wife contracted a bacterial meningitis from pneumococcus after Christmas. She is on the ICU ever since, not awake yet and how this will turn out is very uncertain. We have two little kids which just makes it a perfect catstrophe. It is quite difficult to find other people with the same experience since this is so rare. The fact that a healthy person with a cold can be hit this hard within hours is beyond unimaginable. Anybody who is going through the same? I follow all the advice, taking care of myself, document as much as I can for her. But at some point I just feel alone in this. I have a lot of people caring for me and the kids and also in the hospital they are looking after me very well. But still I don‘t feel like people really get what I am going through.
Bacterial meningitis: My wife contracted a... - Meningitis Now
Bacterial meningitis
I can totally relate.Please read my posts and more importantly the replies which have encouraged me and kept me going.
My husband does appear to be making a meaningful recovery but as advised in the replies, his body will have to re learn a lot of stuff including walking.
If your wife is young she will have this on her side.
It does seem to be a slow slow gradual process and again as in my replies some setbacks along the way.
Please contact meningitis now when you are ready as they are very helpful.
You are not alone xxx
Thank you for your response. When I read through your posts and responses, what struck me was the part about the staff. My wife is in a very specialized neurology ward but still if I would receive a dollar everytime somebody says how extraordinary her case is...
She is young, yes, but this was like a nuclear war on her brain. It is going to be a long road ahead of us and what is really quite difficult to endure is the uncertainty about where it is heading. We have all the (almost) fully recovered people writing here which is great and gives me some hope. But still, where I am standing, it is very hard to cope with other possibilities and outcomes.
At the beginning I was telling myself, this is just a bad dream, I just have to wake up. But I never did and now I am in this confusing alternate reality trying to stay sane for my kids and my wife while I am often catching myself staring at the wall and shaking my head in disbelief.
I wrote this response to Newnham1, but I will tweak it some because it is extremely similar to what I went through. Exactly 2 years ago on Christmas my husband found me unconscious after being terribly sick for several days. Doctors found it to be bacterial meningitis, in my case strep pneumo. I remained comatose in the hospital for the next 4 to 5 days. After that point, I started to stir and had what I thought to be more normal interactions with people. But as people described to me now, consisted of me staring at them and not doing much talking. I again took a downturn 2 to 3 weeks into things at which point doctors found I had contracted a viral infection, unrelated, but forcing my body to fight yet something else. At this point drs, via an MRI, found brain abscesses which required 3+ months of IV antibiotics. They were certain I would have brain damage. I do not- so take heart there. But I went deaf in one ear and lost 70% of my hearing in the other and have tinnitus, so look for signs of hearing loss because they didn’t bother testing me for hearing loss for weeks, they just assumed my confusion during conversation was due to brain damage. I spent a month in the hospital doing major rehab, relearning to walk, etc. But the other primary complication I encountered was sepsis which ended up causing severe blood clots all over my body and landed me back in the hospital a week after discharge (the first time) with a pulmonary embolism. (Unlike your wife who had pneumonia, I think I had sepsis which led to the meningitis.) I didn’t show the traditional signs of blood clots like swelling or anything like that, mostly because I was in my late 30s not my late 80s! I feel like that required a lot of extra recovery because the sepsis combined with the meningitis physically disabled me so much. So be prepared for physically limitation- at least at first. I had bad vertigo, but that improved over time as I kept up with physical therapy. we would go to the shopping malls and walk laps every day, just like elderly people do. At the time I had an eight month old baby so I would hold onto the stroller to help me walk around. I also had a 3 year old and 6 year old. Since then I have had another baby too- one of the surprises that came from our post-hospital bonding 😂!
Try to focus on what you have rather than what you’ve lost, count your blessings. Cling to God. Both my husband and I are dedicated Christians and it was my Savior Jesus Christ, who carried me and my husband through the valley of the shadow of death. Pray. I think that is the only reason I am still alive. I had Christians literally all over the world praying for me (and fasting too).
Sit with your wife, hold her hand, kiss her, brush her hair. Talk to her, don’t underestimate the value of your words- she hears you. If you don’t know what to say, Read to her from whatever book it is that You are reading. If nothing else read the Bible out loud to her, I’d start in the book of John. It can be as much a comfort to you as to her. It will give you something to look forward to going to the hospital, other than being with your wife, of course. And give you something to do besides waiting around for updates from the doctors.
We also had family surrounding us and helping take care of the kids. They would tag team who was at the hospital and who was with the kids, but my husband has expressed how overwhelmed and hopeless he still felt. I’m so sorry for what you are going through and when I try to imagine what my husband had to endure it brings me to tears…every time. I don’t know what your outcome will be and I can’t tell you that everything will be okay. I am alive and healthy and sane, just very hard of hearing! I don’t know what else to say, cuz I am sitting here weeping for you.
I said this in the Newnham1 post, but I will say it here too, as soon as I send this reply, I plan to pray for you and will continue to do so in the days to come, just like I have continued to pray for her and her husband.
“I would have despaired unless I had believed I would see the goodness of the Lord the land of the living. Wait for the Lord. Be strong and let your heart take courage; Yes, wait for the Lord.” Psalm 27:13-14.
Thank you very much for sharing your story. I really hope and pray with all my heart that my wife can recover and will be able to tell a similar story one day. Still I am grappling a little bit with the concept of a (good) god. While we as a family go to church, I was anyway often at arm's length. I pray to god to heal her but then again, if he can really do that, why did he let it happen in the first place? Nevertheless, I need to cling to any hopes and possibilities, sometimes also just let the people around me do the hoping and praying while I just gather all my energy to keep on going.
I'm sad to say I have a sense of what you are going through. I spent a season repeatedly asking the question, "why did God spare my life only to take away my hearing." To be honest, part of that came to bear when I read your post. You helped me finally understand things from my husband's perspective. I know he shouldered a great deal while I was sick, and I still can't conceive how he did it. It seems as though all our wedding vows were simultaneously pressed- in sickness or health, plenty or want, richer or poorer (because we were living with my parents to save up to buy a house at the time). We had a good marriage, but now that it was rocked to the core, it has become unshakable. It was a similar experience with my faith in God. How could a "good" God have allowed us to go through that and left me with a lifelong disability? But at the same time I echoed the words of the disciples when Jesus asked them, "are you going to leave too?" Peter said in John 6:68, "where else would be go? You have the words of eternal life." That's how I felt, I needed God more than ever and I had no where else to go. The truth is, this is exactly why Christ came to die- to end the cycle of disease, death, and decay that plagues all of us. "For God so loved the world that He gave His only Son, that whoever believes in Him should not perish but has everlasting life. God did not send His Son into the world to condemn the world but that the world through Him might be saved." (John 3:16-17).
If you have a moment, I'd love another update on your wife. We continue to think of you and we prayed for you, your wife, and your kids last night. I'm so sorry for what you are going through. It is a long, slow road. God is near.
Thinking of you 🤗. Take heart, I have made a full recovery from bacterial meningitis and sepsis. It's taken 5 years. I was 63 when I contracted it. The brain needs a lot of rest 😴 to recover. Keep posting here, this group was a lifesaver for me. 🥰
Thank you for sharing. "It's a marathon not a sprint", they keep saying. I just hope she will be conscious soon so she can at least share a little bit of the family life. Just now the little one is starting to speak and her not being there to witness is just heart breaking.
Any updates on your wife? Thinking of you all.
Thanks for asking. The infection seems to be under control, finally, after they had to do another surgery (she already had a calotte removal on day 0) to be able to apply the antibiotics directly into the fluid they will now dial down on that significantly. Her 4th MRI showed some improvements and she is starting to breathe on her own. We are now initiating the long road to recovery.
She is sometimes looking around and is more and more awake but she is most probably not conscious yet. It is a very unsettling feeling, when your wife stares at you but you don't really know if she recognizes you. I take it day by day, there is no other choice.
Glad she has hers eyes open and the recovery is happening. The brain needs a lot of sleep to recover from meningitis…like a lot. I would just stare at people and fall asleep mid visit- at least that’s what they tell me now. I remember it like normal interactions. So take heart. Your presence makes a difference- one of the few familiar things that she knows. My husband’s voice was the only one I could hear and recognize.
I told him about you- he is currently out of town but he remarked how sad he is to say that he understands. He said do what you can to take care of yourself- exercise regularly to keep your mind and body fresh so you can take care of your kids and take care of your wife. Don’t dwell of the “what ifs” or future scenarios. Just celebrate every day and victory as it comes. Also, surround yourself with a good support system of family and close friends who can be right there with you helping to shoulder the burden of everything, especially helping with the kids. It’s going to be a long road. One step at a time.
Jon still tells me about when the nurse was asking me a couple basic questions and having me answer by squeezing her hand. Then he asked, “do you know who I am?” And I squeezed his hand.
praying for you. Going through very similar with my mother in law. She’s on day 6- they started to wake her up from sedation but they Discovered pneumonia and have now chemically paralysed her for treatment.
We are scared but they said 2-3 days for this…
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