I was admitted into A&E and hospital with Sepsis from Bacterial Meningitis on 11th August. I was in for 2 weeks and then self administered meropenem at home for another 2 weeks.
I was feeling very tired and dizzy and eye issues when at home and my consultant when she discharged me said that it was more than likely the anti biotics as they can make you very tired and dizzy as it is such a high dose and I had a lot of it. Said I would be back to normal in about 2 weeks after finishing the anti biotics.
I have a swollen optic nerve in both eyes and that is being followed up by a lumbar punctrure, opthalmic appt and a neurologist apt in the next 2 months.
However, my eyes ARE improving. I do feel very dizzy a lot and very very tired. I know that I spent 2 weeks only getting up to go to the toilet, then 2-3 weeks not moving much. So I know that is going to take some time to get used to,
But I do feel rather down aobut the fact I still have things that are restricting what I can do in my normal day to day life
No advice give, even in hospital no advice about what I will or wont be able to do. it worries me that I dont know how long it will take .
Does anyone know?
Is it possible to know?
I used to have motion sickness but this is a lot more frequent. Its like my brain is moving but my head is perfectly still.
Would really welcome hearing from others.
Also I dont think it has really hit me how seriously ill I was . I was living it. Others were hearing about it or visiting me but I was just in a " I want to sleep", " I want painkillers" "I dont know what to do with myself" " Will you please turn off the light".... ha ha
I watched the Alan Titchmarsh program last Monday and there was someone who had lost his limbs after having the same as me. It was really upsetting and it hit me.
I think to myself "Im better now, I can get out and about,so I need to just get on with life"
BUT then I overdo it and Im knocked out for a day or two.
Really would love to talk to others who can relate to this.
Please
Thank you
Natalie
( a normally very active person who loves to run half marathons, marathons, walk up Snowdon, walk for miles rather than use transport)
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welsheuphnaty
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Hello, I am 5 years post Viral meningitis and I felt very ill for over 2 years and I still live each day as it comes now as I still have many of the after effects... chronic migraine, dizziness , loss of balance , numbness in my foot and fatigue . My spine dislocated in 3 places due to the pain and rigid membranes and muscles which added another layer of difficulty.
It took me 3 years to get back on my feet but not back to my normal self. For a long time I had to rest , if I went out for a coffee it would lay me out for days. Some days I had to choose between making a cup of tea or having a shower as I couldn’t find the energy to do both. It was 28 months before I got back to work on reduced hours.
I am also sporty . I’m having a bad spell at the moment BUT I am back to doing exercise on a regular basis and if you check my profile you will see that I have climbed Snowdon, Nevis and Scafell Pike , one mountain per year over the past 3 years.
You have had a very serious illness and it will take some time to recover from it .
I advise a very healthy diet . Lots of rest and some very gentle movement / walk .
I eat a lot of green smoothies, turmeric , vitamins and flax oil, vegetables and berries.
I had acupuncture which helped me to gain energy .
I have a lovely neurologist who has helped me to recover my balance with physio therapy arranged spinal physio and gives me Botox for the chronic migraine.
I had what you had. The reason I called for an ambulance was because of the EXTREME pain in my legs and feet. Ten years after being released from the hospital, I still could tolerate ONLY socks on my feet (due to pain.) It's been 40 years now and although my legs are pain free now, I still have foot pain...but it's tolerable. Can't wear heels, but that's ok because I'm tall. When you were in the hospital, did you have EXTREME pain in your legs & feet? You mentioned wanting painkillers. What kind of pain?
I am sorry you went through this. It takes a LONG time!!!!! And some things may never fully be as they once were. Please do read the other posts on here about recovery because you will get a long of good information from those and understanding about how long this takes, what people have done that has helped or not helped, that rest is really the only major thing you can do, that doctors just simply don't know and really give terrible advice about this illness, and more. You may find that some people respond but many can't because they have responded to similar questions about recovery time too many times. So searching for other threads will help.
Hi. I had bacterial meningitis in March. In hospital twice for almost a month.. I was very dizzy, had a lot of flickering lights in my eyes, still very tired if I do too much. Still not fit to go back to work as a joiner.
I too don't think I know how bad I was. Luckily I still have all my bits and pieces. Getting confused, angry and upset which I never really had before. Depression too as I was always working, doing stuff about home, helping people.. Now run out of energy if I over do it. But it does get better... I think sometimes I realize I'm not just as bad as I was and improving... Other times frustrated cos I'm not improving enough... Everybody says it takes time and I'm slowly realising that..
But we're the lucky ones.. We're still here and with time we'll get through it.
Our nurse-led helpline is available to help answer any specific questions you may have or to find out more about our support by calling 0808 80 10 388 (UK only) or email: helpline@meningitisnow.org
Natalie, welcome to this group . You've come to the right place. I was diagnosed with bacterial meningitis in January, 10 months now. This group has helped me deal with this loooopng .....recovery. We are the lucky ones, we are alive with all our limbs. Rest and don't be hard on yourself, listen to your body. The medical community doesn't know how to help us after you get out of the hospital.
I finally have a referral to neurology next week. I still have light sensitivity and daily headaches. I also have short term memory problems, simple math is challenging.
We are all different, but telling you that you'll be back to normal in 2 weeks was wrong! I am a registered nurse in the US, still not back at work. I want to figure out educational information for the medical community regarding our long term recovery. And also recognizing meningitis symptoms.
I wish you healing and joy. Ask us any question you want.
Hi! I also a nurse in the US who had bacterial meningitis almost 4 years ago. I am back to work but far from being back to normal! I have good days & bad days of short term memory issues, headaches, no energy & hearing problems. I agree that the medical community has no idea how to help you after the antibiotics are finished. Maybe we can collaborate to find a way to educate them. I have learned that resting definitely helps but it is difficult to try & live like you are able to return to your same level of activity. Good luck on your recovery!
I haven't been checking this often enough. I found out I have "delayed memory deficit ". Which is why if seems so odd. Sometimes I remember, other times I don't. It is the constant why did I walk into this room, or open this drawer, what was I going to say or do? I found out Christmas Eve day that I was approved for disability. Kind of a relief and depressing at the same time. I'm seeing a psychologist who suggested I try to get a grant for health care education on recognizing and long term care of bacterial meningitis. I may try to contact a medical school about 100 miles from us.
I'm. Experiencing much the same as you and now the depression has kicked in. I'm really emotional and feel like I lost a part of my self in the whole ordeal.
I was admitted to hospital on 27th Sept and have completely lost my convidence in the most basic things in life.
It helped to read your story.
I feel the brain takes a long time to heal. With gentle self talk and being in nature helps a lot.
Because people cannot see that there is any wro g with us it makes it hard for people to understand. I don't talk to anyone about what happened to me. I'm still trying to understand it myself.
Your post really resounded with me - I too had bacterial meningitis in January 2017. Try and read my story that I posted on this site - physical & mental health ' recovery' took me a long time. I still have a few residual issues with balance & tiredness but manage to live a busy & fulfilling life.
Hi Natalie Angel, You are my Angel today. I had an emotional meltdown and sobbed and sobbed to my daughter interstate on the phone. I was saying to her: It's 4 months of having no life! I tell her that everything stresses my brain - even talking to people. Too much online, socialising, playing with grandchildren even being too happy excited hurts my brain. I get headaches if I stress - even if I chat too long on phone! That is stress! My head spins if I get excited playing with grandchildren! I had a constant headache for the first two months. I had Bowen therapy (gentle bodywork) 2 sessions and that helped me enormously feel better. I am booked to have another session next week. It helps to remove body stress memory. I also had 3 craniosacral massage sessions (gentle body hands on healing) that helped my energy improve a lot when I was 2 weeks post Meningitis. It take 2,000mg Vit C, 2 doses probiotics, Vit B12, Nattokinase 100mg, Combination 12 tissue salts every day to help boost my immune system. I am looking at some more natural healing via homeopathy and am booking an appt with a professional homeopath. Dr's can't offer me anything! I live alone am 63 years of age and struggle to get through just caring for myself and doing all the jobs that come with just living! I phoned my daughter because I feel really unwell today. I had a headache and strange feeling in my brain (often happens, but is getting less and less), and my legs felt really heavy almost numb. I was concerned I was brewing another TIA (mini stroke) and I live alone. She has been checking on my every hour. She wanted me to go to the Dr, but they are useless and nothing ever shows up! I said it was more stressful to try and go to the Dr's and told her I just want to lie down and rest awhile. I drank extra water and lay down for an hour and headache gone. I have learned that I MUST REST more and still I resist! I wake up feeling good and then do a few things and then I am exhausted all of a sudden. I struggle to get the balance between doing and resting. I tried to go back to my tiny part time job and that lasted only 2 weeks of only working about 6 hours a week in 3 hour shifts! I then ended up having 4 TIA's (mini strokes) which twice they told me wasn't associated with the Bacterial Meningitis/ Septicaemia that I contracted on 31 August 2019. One of the times they said I didn't have a TIA and the other time I waited 2 hours in Emergency and then phoned my daughter to come pick me up without having seen the Dr. The triage nurse told me on arrival that I wasn't having a TIA and basically suggested it was all in my head and I was creating it with thinking too much about it! I ended up going to GP and asking for a referral to a Neurologist in the public health system and they deemed me urgent and I saw him a few days ago. He told me that the TIA's were not related to my Meningitis. I went into shock and questioned how? I have always been very active, fit, don't smoke, don't drink alcohol, don't take drugs recreational or prescription, eat a really healthy vegetarian diet with very little processed food, am not obese, do not have diabetes or high BP! He said I was susceptible due to age 60+ and then suggested maybe stress. STRESS! Is he kidding me, this illness has been an enormous stress - to my physical body/brain, mentally, emotionally, spiritually and not to even mention the overwhelming financial stress! When I talked to him about this stress he kept shaking his head 'no' the Meningitis isn't causing the TIA's. Well THE STRESS of the Meningitis could absolutely be the reason for the TIA's. The Stress to my body and brain to start of with could certainly upset the delicate body systems ! So since seeing him I have let myself become more vulnerable and told my family that I am under stress and financial stress isn't helping either as I can't work and I am on govt payments for sickness which does not cover my rent, food, bills. I have been using my paltry life savings and it hurts to do that because that will be needed for retirement. Two family members have offered some small amounts that they will pay me each fortnight until I can return to work. I sobbed my heart out after they offered this to me. I realise I must ask for help and that is so hard because I have always been in good health and fiercely independent. I had absolutely no idea that this illness was so serious and had such long term recovery. The Dr's basically told me I was fine and to have a couple of weeks off work to recover! I am so utterly grateful for this online forum as it has been so helpful to know that what I was told is not true! I am very lucky that I did not end up with serious damage to eyes/ears/brain/limbs etc. Yet I need to honour that I have been left with a long recovery and nobody can predict how long that will take or if ever being totally recovered! It's hard because I look fine and all the tests they have done CT scans, ECG, Heart monitors, blood tests, ultrasounds etc show all is good! I do know when I look back that I have improved a lot and can manage my daily life better now. I need to remind myself to pace my daily living and to not overdo anything or let anything stress me. I try every day to find things to be grateful for and of course I am grateful for my very life as I was seriously ill. Today I am grateful for YOU and this wonderful supportive forum. I wish you all the best in your recovery journey and from what I have read her from numerous posts the best medicine of all is to surrender to REST, REST, REST, REST, REST and more REST. The body heals itself with REST. Ohhhhhhh and please drink lots of water and stay hydrated - it helps headaches and healing. <3
Well just read all the posts on this site. I am one year in and still having issues. You will get better, slowly. The doctors and hospitals have no clue. I was told NOTHING either. Please rest, try to stay positive and read these posts so you will not think you are crazy. God bless...this is a long journey. We are strong!
Hi Natalie, welcome to the group and hope you are ok?
I had bacterial meningitis and sepsis around 4 years ago now. I have to say I was extremely lucky to not loose limbs or something worse.
I do know what you mean by be really active prior to this condition. I was the same but had it stripped away from me. However, this is the start of year 4 for me and I have enough energy to go back to the gym and get back to walking outdoors.
Unfortunately my ear has not been right since my illness and waiting to see an ENT specialist. I am just going with the flow at the moment. I’m back working which is good but often still get tired.
When I was in hospital a specialist told me that it takes 30 years for the brain to fully heal after this illness. He also told me to eat fish as it’s good for the brain, don’t drink coffee or alcohol. Not sure if that helps?
I did take probiotics for around 8 weeks after I left hospital due to all the drugs that were pumped into my body. Will start taking more vitamins soon to help boost my immune system for the winter.
I think I started feeling normal after a year. But still took it easy and did not exercise intensely for 3 and a half years.
Anyway, hope you are resting up and you have someone caring for you. Take care.
Hi I had bm 2 years ago I am just starting to feel ok some days are better than others I have trouble with my balance I just live day to day I think my self lucky everyday that I didn't lose any limbs it is so very hard you think that you will never feel right it took nearly all the 2 years for my head to feel ok hopefully you will feel better soon take care
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