A year on and I still feel weak and exhausted after pneumococcal meningitis. Is this normal?

[bess121]

Hello everyone, This time last year I was found by my partner unconscious and rushed to A&E where I was diagnosed with having pneumococcal meningitis. I was put in an induced coma and pumped with antibiotics. Obviously I have no recollection of my time in ICU but I was given a 50/50 chance of survival. I spent over a week in ICU and a further 2 weeks on a ward. At the time of my discharge from hospital my vision was severely impaired, I could barely walk, had no balance and no hand/eye co-ordination, severe diarrhea and sickness and totally deaf in one ear. My family and myself had no idea what to expect for the future. After visiting my GP on a number of occasions, I was told that there was little they could offer as support. My family are amazed at the improvements I have made and keep telling me how well I am doing, some days I think this way too, however, most days I am not that optimistic. I feel very lonely, worthless and a burden. Everything is such a struggle to do now. My family have been amazing and supportive, but is it "normal" to still feel so weak and exhausted and does anyone have any suggestions as to how I could start to get my mojo back. Thank you.

[rowenafly]

Ohh wow that's so hard. I understand those feelings of worthlessness, it tends to come with the depression. I m sure your family know your value and love you deeply so it's important to know although you have been sick, it cannot take away your intrinsic value. You are not worthy just because of what you do. Doing doesn't make you more valuable. I had the same thing not being able to work or do a lot. You are good just being you. As for recovery, wow it's long scary and boring. Most people improve and you are in the most people category. It's not if, it's just a matter of when. I hope that helps you know you are not alone . There's sooo many of us damaged meningitis survivors. Keep talking to us, we can help each other.

[ceris]

bless you, i know just how you feel that is almost a carbon copy of me, i had pneumococcal in oct 12, induced coma, 10 days in ICU, and 5 days on a ward, severe diarrhea, which i was told was the antibiotics, they do pump you full of them, i still feel weak and exhausted at times, but it does get better, just listen to your body if you feel tired have a rest, like you i had a lovely family to support me, i found that the depression was awful and i spoke to the lovely people at meningitis now, they really do help, it is a long journey to recovery but keep positive you will get there, keep in touch on here and let us know how you are going, its so good to talk to people who have been there.

[Cassie]

Mojo love it x I'm nearly 4 years post bacterial meningitis my survival rate was given as 30% I left hospital with little awareness of how difficult it was going to be and how much my life was going to change. But after four long gruelling years My "mojo" is back - so you will get there - just keep determined and focused and I know how hard that can be but one day you will be back in control of your life.

What I found helped me was 1) brain exercising loads of stuff free on the net 2) setting myself small goals something new to achieve every week / month what ever you can cope with 3) walking being outside meeting others I know you might not manage this yourself so enlist a friend 4) being honest with myself and family and friends about how I really was feeling - stop using the word fine ! 5) being aware of how far I had come I know it's difficult when you want your life back know! 6) accepting - this is hard because in a way you have to grieve and let go to accept how and who you are today and make the best "living" life you can and allow your self to move on

Wishing to all the best good luck x

[bobbyvere Volunteer]

Hallo bess. I am six years past pneumo and still identify so strongly with all that you are saying, as my experience was very similar to yours. Obviously I can't know how you will be in the future but for me things improved very gradually. Looking back on a monthly basis helped me to identify improvements however small. I am now well.

As you say the GP doesn't seem to be able to offer help, but what helped me most was trying to help myself. I got a recommendation for a good homoeopath and went from 97%+ hearing loss in both ears to a "normal" reading three months after treatment. She was also able to help with the diarrhea,(having been discharged from hospital with c-difficile which made everything worse!)

The feelings of loneliness and being a burden are, I'm sure, normal for someone who has never had to rely on anyone for anything before. I remember well how very hard it was to accept but found it helped to remember the pleasure it had always given me to be able to offer help to others - and now it was my turn to receive it.

I really hope you start to get your mojo back soon - spring is coming. Be well.

bobbyvere

[bess121]

Thank you all so so much for your replies to my post. Today started as "not a good one" but after reading your responses my spirits are well and truly lifted. I will definitely try some of your tips Cassie and Bobbyvere.

I suddenly no longer feel alone ...............x

[corps1]

Sorry to hear what a bad time you have had. Had pneumococcal meningitis 4 yrs ago. Was in hospital for 3+ months partly in an induced coma. On good days I can swim 30+ lengths not the 40 I used to do. I'm now too slow. I find balance the worst thing. Walking holidays are not on the agenda anymore. Some days are really bad and I give up. Total deafness in one ear has posed a bit of a problem especially when with a group of people. BUT hey I'm still here to annoy may family.

Wishing you all the very best.

[nfregoe]

Can I say to all of you that none of you are now or will ever be a "burden" to your families. We are the ones that would have sold our souls to let you live during your comas. We love you and just want you to enjoy your life, whatever form it has taken because of this horrible disease. If my brother had survived I wouldn't have cared if I had to listen to him repeat himself or help him care for himself - I just wanted him to come back to us. Give yourself a break - people are much more understanding and kind than you give them credit for. I look at it like a person that has had cancer or been involved in a terrible car accident. No one would expect those people to just get up and go back to being perfectly normal. It takes a tremendous amount of time and suffering to recover - this I know first hand from watching my brother and from reading these blogs. I for one will forever have a special place in my heart for BM survivors, their families and for the families of those that didn't survive

Love you all.

Nancy