9 weeks on from my meningococcal septicaemia diagnosis

[CricketFan91]

I'm new here and looking for a community of people who can possibly offer some advice, support and just general understanding. After contracting meningococcal septicaemia at the start of July I am a full 9 weeks into recovery outside of the hospital walls, and I'm finding the side effects of not just the disease but the cocktail of medication running through my system to be quite debilitating.

I know that I am one lucky lady for having survived this illness with nothing more than headaches and sickness - and I count my blessings on that every single day. For the most part I try to remain positive, and tackle each hurdle and obstacle with that sentiment at heart but its not easy. I think I got myself into a false sense of mind when i was discharged, I thought I'd be able to just pick up on where I left life - that I could go straight back to work, and my everyday activities like nothing had happened. That somehow just being discharged was enough for me to convince myself that I was better and therefore I could do everything. It wasn't true, and still 9 weeks to the day its not true. I have headaches that are under control from medication but its taken 7 weeks to adjust and find what they medication is - headaches that cripple me and render me useless. I have fatigue that means I could happily sleep for 24 hours all day every day and never feel fulfilled, that's seen me fall asleep on route to work, and miss key appointments through oversleeping. I have persistent sickness controlled by anti sickness meds - constant blood tests to check organ function and an immune system that is at the brink of giving up. I've now got an allergy rash sparked by the cocktail of meds, an ear infection and tonsilitis hitting me all at once - and I honestly have not felt as low. I want to believe I'll get better, and I know I have made heaps and bounds of improvements in the last 3 months - however as soon as I get things back on track, something attacks and sets me backwards.

I guess what I'm hoping for is to find people who understand this, who know that this is a struggle but can help me to find away to stay positive and up beat. I have a great support network of family and friends, and so I am immensley lucky. What I don't have, bar the doctors advice, is other peoples first hand experiences, suggestions on management of pain and symptoms, either medically, spiritually, herbal etc. I feel like i cannot quite see the wood through the trees at present, and I'm lost.

I want to be of help to others, but also find some help - I realise and hope tat this will be the forum for it.

Thank you

[Zengal]

Hi I have just read your post and wanted you to know that you’re not alone and I know exactly how you’re feeling. It’s great to hear you have a good support network around you with family and friends.

I’ve found that yoga and swimming have helped a lot. It took me a while to be able to do both as I also temporarily lost the use of the right side of my body through developing a secondary illness from the bacterial meningitis (acute reactive arthritis )

Walking in nature, removing caffeine, reducing the amount of time you’re on TV and staying away busy environments helped me a lot and still do help me 11 months later.

Wishing you a speedy recovery. Remember to be kind to yourself and take each day as it comes. X

[CricketFan91 in reply to Zengal]

Thank you for the advise, I have definitely found getting out and walking to be so beneficial to how I've felt so would totally agree its a great method.

I can only imagine how challenging and frightening temporarily losing function must have been, so its incredible you worked your way through it and fought back. Certainly gives me a lot of hope that these 9 weeks will continue to get better.

I must always remember to be kinder to myself - I sometimes expect myself to be capable of more than I am because I am free of the actual bacterial meningitis , and never give myself credit for all I have managed.

X

[Pug264]

I understand you totally my son at the age of five contracted this. It will be a year on the 19 October since he had it and it is a life changing experience, he thankfully fought all the way through. As you mentioned about the headaches and sickness I would like to tell you that they ease but I have found he gets them four times a week and they make him sick too. Everyday I count as a blessing with him and as it’s coming up to when he contracted it I am hoping it dosent happen again if you ever need to chat I would be willing to chat to you so don’t think you are alone.

[CricketFan91 in reply to Pug264]

Thank you for taking the time to read what is a very long post from me and share you and your sons story. Incredible that at such a tender age he fought it every step.

Its comforting to know that the headaches and sickness ease, they've been a big contributor to how I've been feeling. People hear that you have a headache and just brush it off, and you start to question yourself sometimes.

That milestone of 1 year must feel pretty astronomical but nerve wrenching too - i try to document the progress I have made from admittance to discharge and see them as milestones, but they also make me anxious - the worry it may return or these symptoms mean it has returned, are never an easy balance.

I keep my hope for your son that he continues to be free of it, and hope with each day he feels better. I'd love to take up your offer on a chat, definitely, it has been a comfort reading from other people on their journeys.

[Aacm82]

After my daughter being diagnosed with meningitis age 9 it took us a full year before we realised alot of her problems after she was home ie headaches tiredness etc were due to her eyesight being effected from the disease. She has a rare deficiency so has now contracted Bacterial meningitis 4 times and although She looks a healthy 18 year old she has sight and hearing problems. Anxiety and stress. She struggles to concentrate so is still trying to finish exams that she was more than ready for in 2017 before she was taken ill again. she will easily sleep 16 hours a day everyday (so i let her) there isnt a time limit on your body (or mind) recovering it has been through a major beating so dont push yourself to do what you dont feel up to. Please know You are not alone, And even if only to score them off a list of whats not wrong its worth having your sight and hearing double checked. after surviving such a serious illness without any physical signs of how sick you actually were that it is automatically assumed your ok. You can have the most wonderful support from family and friends but it is an illness unlike any other and nobody can understand what you are going through unless they have been through it. I found my daughters consultant helped her understand its normal not to feel ok just because you look ok. (If that makes sense!) so maybe talking to an actual Dr that specialises rather than a GP who is unlikely to have had first hand experience with it. Most local hospitals will have a consultant in infectious diseases that may offer you some good advice on your recovery. And Meningitis charities over the country have other survivors that you can talk to about how your feeling and it helps knowing your talking to someone who really does understand..

Apologies I realise that was a long reply! I hope some of it might help you find the support you need to fully recover.

Take care

[CricketFan91 in reply to Aacm82]

Thank you for sharing your's and your daughters journey - it sounds like she is an incredibly strong young woman having fought it off so many times, and she is lucky to have such a supportive parent too. You are right about the disease not being visible to anyone, its hidden and to others you are ok because on the surface you are ok. I definitely think it is great advise to get back in touch with my infectious disease consultant, as they certainly have the first hand experience, and see what they can do to help me. I'll also look into getting my hearing and sight looked into - I've had a few infections since being discharged both in my ears and eyes, so there may be a correlation - so thank you for that advice.

I cannot thank you enough for taking the time to share with me, I honestly cried a little reading it, it rang so true to me, not only the symptoms but the feelings of stress - of wanting to be ok and never quite being ok.

I truly hope that for you and your daughter it continues to go well and that her recovery continues - she has true support in yourself which I know has been invaluable to me on days where I just want to sleep all day.

Thank you so very much

[July23]

Wow I had VM on 23 July and can sympathise with all you are saying. However I have not returned to work yet. I cannot concentrate or remember things easily. I cannot multitask or I get neck and headache. I will not be back to work for a few more weeks.

My immune system is still malfunctioning.

This is a long haul. Try to be kind to yourself you have come a long way.

[CricketFan91 in reply to July23]

You definitely should rest as much as your body tells you too, I was very stubborn and came back far too quickly, and it was not the right thing to do.

I have realised you need to be kinder to yourself, you have overcome something frankly quite terrifying and are stronger for it now. Keep going, you've already come so far. X

[Aacm82]

I should be thanking you! This sight randomly flagged up this morning (nobody really gets the the obsession to keep checking online for any info u may have missed) and yours was the 1st post I seen. I have never told her story so I do hope it helps and u can get some answers. I will be encouraging my daughter to come on here.. its amazing how many after effects are going un noticed and untreated but strangely comforting knowing others are suffering the same...

Take care

[kirsty40]

Hi,

Sorry to hear that you fell victim to this terrible disease! I contracted bacterial meningitis and septicemia 4 years ago. It took me a while to get back on my feet. Can understand how you must be feeling right now. Where would we be without friends and family?

I was told to reduce coffee intake too and eat lots of fish because it’s very good for the brain. But I think just good nutritious food will be a good idea.

I have Been working full time now for around 2 and a half years but still struggle a bit. My main issue is my ear as i burst the ear drum - from a sinus infection. Then that created the meningitis. I am waiting to see a specialist as currently have an infection that won’t go away.

I also had dry skin problems, hair falling out etc. I think the medication probably creates havoc with your system. Once off the antibiotics it will come right. Believe me there is light at the end of the tunnel!

Take one day at a time and rest when you.

All the best with your recovery. Hugs!

[Quiltergirl]

I am now 10 months into my recovery. I am a registered nurse. I have not been able to return to work. I was told by a nurse practitioner when I left the hospital to give myself 6 months to 2 years for recovery and to find a meningitis support group. Meningitis now has been wonderful. Everyone helped me know how much I needed to rest, and could really understand what I was dealing with.

I don't know what you're job is. I have some short term memory and sequencing problems, and am dealing with something I had never heard of called Arachnoiditis, from the epidural abscess the led to the bacterial meningitis. I may never work as a RN again. I am 58. It is so hard to accept the new normal. And it will keep changing.

I finally just got a referral to a neurologist for the cognitive problems and headaches.

Be kind to yourself, use this for questions. The medical community doesn't really know what to do with us. They just don't treat meningitis after effects very often. I would love to use this experience as a learning tool for medicine.