In January, my twin sister had battled with bacterial meningitis. Thankfully, she has fully recovered and is springing back into life again. However, I can't stop thinking about what happened and all of the 'what ifs'. This post is a selfishly needy way of gaining empathy, and I had suffered nowhere near to how much my sister had suffered. I feel it's best to go over what happened that morning (sorry for the mad venting, it's driving me crazy)...
At 4am I was woken up by my mum exclaiming that there was something wrong with my sister (she had been unwell the day previous). I rushed downstairs to find her collapsed on the living room floor and fitting. We weren't sure what was wrong, but all I knew was she needed medical help and fast. Before we knew it, a paramedic arrived. He immediately requested for back up and asked questions like, "Is she under the influence of drugs or alcohol?", "Does she have autism?" then it clicked. She had something wrong neurologically. Before back up arrived, my fight or flight response kicked in (which isn't difficult when diagnosed with GAD) and I fled upstairs because I was going to faint. God forbid they needed two ambulances! Two more paramedics arrived and tried to lift her up into a wheelchair. I heard this horrifying, raspy howl coming from downstairs. It was my sister. I remember it like it was yesterday, my stomach dropped what feels like 5 metres just writing about it. Before long, she was brought outside. I peaked out the window and saw her head slumped backwards, her mouth agape. It was like she was lifeless.
She was in hospital for 6 days. The first two days were painful. She had been unconscious and unaware of her actions. From what I was told, she had no control of her body whatsoever. She fought the doctors and nurses, bashed her head on the metal bars of her bed in A&E and gave herself a black eye, ripped out her catheter and IV and undressed herself. It took six people to hold her down! She then sat there with her eyes wide open but pupils completely dilated. My mum and dad were traumatised. I just remember the night, how difficult it was to sleep. Every phone call caused an anxiety attack. I couldn't eat because my stomach was full of butterflies. Then the next morning my dad rushed up the stairs and was on the phone. Instinctively, I rushed out of bed praying it wasn't what I feared most. He handed me the phone. It was her. I had never been more excited and relieved to hear her voice in my life! All of my fears of never speaking to her again had vanished! She was groggy and confused, she lost her train of thought (an after effect to this day). She says she doesn't remember anything. She only remembers going downstairs and slumping herself on the sofa. She then tried to get up for a drink and collapsed knocking everything off the coffee table in the process.
But here comes the alternative scenarios my stupid brain makes up. What would've happened if she didn't go downstairs? If a loud crash wasn't made? If my mum didn't respond to it as quickly as she did? If she didn't respond to antibiotics as amazingly as she did? A small sepsis rash developed on her in A&E, what if she was found a couple hours later? I hate thinking these things, it makes me sick to my stomach. I'm told that I shouldn't think of these scenarios because they didn't happen, but I can't stop my mind from racing.
Phew... Sorry for the long, too detailed and somewhat narcissistic post. What I'm trying to get at is, has anyone else felt the same way?
Thank you in advance.
(And for those who're currently witnessing a loved one go through meningitis, my thoughts are with you all and I hope for them to have a speedy recovery)
I can greatly empathise with you. I witnessed and had to cope with my husband having bacterial meningitis and sepsis nearly a year ago.
He had been unwell for a couple of days and went to bed early to " sleep it off" but by late evening when I went to bed he was burning up, had very erratic breathing and when I tried to waken him I couldn't. This led to an emergency ambulance to hospital, 3 weeks in intensive care, a further 4 in a general ward and many months of further rehabitualtion. He is now pretty well.
I have experienced the " what if" thoughts quite regularly although the intensity of the feelings are improving.
My main one is what if I had left him to sleep things off overnight and gone to sleep in another room. Doctors told me getting to the hospital a couple of hours later would have probably been too late.
The whole experience, including the Intensive Care experience was traumatic but I think we, as a family, put all our efforts into supporting my husband and helping his rehabilitation and I think this helped us all to cope.
We are also putting efforts into organising a fund raising concert for "Meningitis Now" which we find is also a good way of doing something positive to help us. Meningitis Now do a great job to try to raise awareness of this dreadful illness.I think raising awareness is very important as I believe it was the shock of being involved in an illness we knew nothing about that added to our stress.
I hope your flashbacks gradually subside and your sister keeps well.
I totally get what you're saying and feeling. My daughter (who's 23) had bacterial Men B last November. She was in ICU for 6 days and a further 5 days in hospital.
She is recovering well, she still has left sided weakness, balance problems, vision loss in left eye as well as the head, neck and back pains. But it is still early days.
I constantly think about it, the what ifs. She was so ill in ICU and we were trying to keep positive. I worry about how this is going to effect her life and if the ambulance hadn't taken so long, would she have had these after effects? All pointless, but I can't help it. It doesn't help that many people don't understand what relatives go through or how serious meningitis is.
Reading others stories and commenting on them is a help and I'm sure things will get better over time.
Just know you are not alone and there are people you can talk to Meningitis Now (in the UK).
My baby is a year post bm which she had at her 40 days of life.
I keep thinking the awful scenarios of what would have happened if she didnt have fever or vomiting. she was a newborn and there is now'way she could show us she was seriously unwell otherway.
I also keep thinking'what would have happened if i did not ensist tha something was still wrong with my baby after our first discharge from hospital. Doctors were telling me to stop being a nervous mum and that my baby was ok. A day later they themselves diagnosed my child'with unsuccesfully treatet bm and they started a second and third cycle of antibiotics.
Now,i have given birht to my 2nd baby and he is now 22 days old. I fear of what if something happens to him as well. I constantly watch his temperature and everything..
Yes it is a trauma'what we all have gone through. Both for us parents,relatives as well as for the people that had bm.
It takes time to control these what ifs..
We have to keep thinking that our beloved ones and ourselves,are blessed and'lucky that have survived and are doing well.
Sounds like a bit of post traumatic stress, Im still going through this now, my son caught meningitis at 21 days old. And I'm forever changing the scenario in my head, and still relieve it on a daily basis. Usually several times a day. I am very envious of my son because he will never remember, won't remember seing him fight for his life, surrender him for theatre, wires sticking out of his little body, listening to him screaming over and over as he needed recannulating. All that's burned into my brain now and sometimes it's all I see. Don't feel guilty about needing empathy. It's part of the process. I've been referred for counselling, which I will take. Like another lady has mentioned, I'm never more than ten feet away from a thermometer. Every time my baby cries, I'm all over it almost getting panic attacks and overthinking things. I imagine worst case scenario every time. It's irrational I know but I'm still working through things. What your describing is normal (I hope) lol. It's just a horrid thing to happen and it's like a bomb going off. Takes a long time to pick up the pieces. Xxx
For anyone who is still struggling with the emotional impact please remember that we are here to help
Our support includes providing more information to help you make sense of what has happened, providing professional counselling sessions, putting you in touch with one of our support officers, or helpline to find someone else who has been in a similar situation to talk to. To find out more about our support contact our helpline: 0808 80 10 388 or email helpline@meningitisnow.org
I was the patient who contracted BM. I think I can help you with your anxiety.
I was 33 and living ALONE with no family nearby. I phoned my boyfriend and asked him to buy and bring me some "Ben-Gay", because the pain in my legs and feet was bad. About 20 minutes passed and he didn't arrive so I phoned him again. "It'll be in about 45 minutes", he said. "Then call me an ambulance", I insisted..."I can't stand this pain for that long." And then I dropped my phone and passed out. The ambulance people arrived and I was rushed to the hospital.
My point is that MY PHONE WAS ON MY NIGHT STAND. Even if you're married, there will be times when you're alone. If your charged phone is always there, you can sleep comfortably.
Thank you everyone for your responses.
It's humbling to know that I'm not alone in how I feel. I've seen the magnitude of the effects of meningitis, but I can't imagine how heartbreaking it must've been to witness children only days old fighting with this. You're all brave people!
I've been speaking with my mum about it. She spoke of how all of my childhood she'd mither over one little heat rash, one small headache. It was her worst nightmare. But now, after spending 20 years with that person to see her go through what she did, it was hard!
Regardless of age, child or partner - it's horrific. Then I consider how lucky she was, with being found and response to treatment. Despite that, it was the most terrifying thing to witness.
Once again, I thank you all for sharing your stories. It has helped me to vent and gain some empathy. I've booked myself into CBT in hopes to continue with accepting what has happened and help with pre-existing problems.
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