BM - what is the average recovery time - my... - Meningitis Now

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BM - what is the average recovery time - my work want me back yet it’s only been 8 weeks since leaving hospital

Nicolaram
Nicolaram

Good morning everyone, this is my first post, I was diagnosed with BM in April and hospitalised for two weeks, sent home to finish my recovery due to covid.

Whilst I am improving I still have constant tinnitus, neck and back pain especially first thing in the morning, feet pain also and weirdly my elbows hurt some days.

I also seem to stumble when walking and am utterly exhausted after doing a little cleaning or anything strenuous, I appear to get very irritated by the smallest issue .

I was a keen runner and cyclist but can’t do either at the moment .

Work are putting pressure on me to return yet I get discomfort from sitting for long periods and really not up to working on a computer .

I look ok a bit tired so feel guilty about letting work down .

I was ill for a couple of months prior to BM, with pneumonia so really need this chance to rest and get well.

I did a long walk recently as was in denial I was still ill but ended back in bed for four days .

Has anyone returned to work to soon and regretted it?

My doctors appears happy not to see me and have so far given my two months off via a sick note, I am due back to work on Monday yet actually scared to do so.

Best wishes Nicola

29 Replies
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I had BM in May 2017 and still get really tired, foggy headed. You need to rest as much as possible. We may look "ok" to others which is frustrating as no-one can understand how you are feeling. I could no way have gone back to work after 8 weeks! I guess I was lucky that my company of employment were understanding and supportive. I hope that yours will be too. Look after yourself and rest, rest and more rest .....

Thank you Christine, very kind of you to reply.

Did you go back under a phased return? If so how long was the phased return ?

So sorry to learn you are still suffering from the effects of BM.

Take care

Nicola

Hi Nicola, yes it was a very slow phased return, gradually building up over a few months. I was off for 12 months. (I tried to g back about 4months after BM, but it was too soon so I spoke to GP and got signed off again).

Hi,

I'm sorry to hear about your struggles recovering from meningitis. I think one of the things that surprised me about BM is how long it takes to recover. I was taken to ICU with BM in February. After 3 weeks in hospital I came home and initially was making a good recovery. I started back at work (from home, with altered hours) after about 3 months and had even started running and cycling again.

In June, I began to get episodes of acute vertigo, sickness, constant headaches and dizziness. It was atributed to healing scar tissue in my ears and brain. I have had to take a massive step back from everything that I had been doing and feel like I am back at the beginning of my recovery again. I think I overdid it, both through work and activity and that has been at least partly responsible for my set back now. It can take a year or more to recover from meningitis and, as I have learnt, it isn't something that can be rushed! My advice would be to hold back until you feel truly comfortable, and even then be cautious.

Good luck making your decision.

Nicolaram
Nicolaram in reply to Spider2020

Dear Spider, so sorry to hear you have had issues after starting back to work, I hope you are resting now.

I want to start cycle and running again but am a little scared. Long walks cause issues, Occ health are putting pressure on me to return to work but I don’t want to have any set backs.

Thank you so much for your reply, I hope you are resting now and making progress however slow that may be.

I am frustrated at losing fitness as no doubt you are.

I wish you well and thank you so much for responding you have reassured me to take things easy.

I also used to love walking and biking... I nowhere near as active as I used to be. Don't force yourself too hard, it's still very early days. Baby steps....and lots of rest😴😴

Thank you for your lovely response

Hi, it seems to me that everyone who has an attack of BM has a different experience according to what damage is done to the nervous system. I had my attack nearly 2 years ago, I’m now deaf, immobile with impaired eyesight and doubly incontinent. But I was lucky to survive. I’ve been told I’ll never walk again. My hearing is unlikely to improve nor is my eyesight. I also have constant neuropathic pain which is quite uncomfortable. So my message is get someone to be straight with you about your condition and the chances of improvement. Your employer needs to understand the seriousness of an attack of BM. I wish you well. Like you I was a keen runner, ran the day before my attack, have done over 50 Parkruns and 8 marathons but my health during the year preceding my attack had not been good. The medication I’m on makes me drowsy, so I couldn’t work. Oh, I had an attack of VM 25 years ago. Had 6 months off work! Good luck.

Nicolaram
Nicolaram in reply to Earthfox20

So sorry to hear your story, you are so right that everyone has different effects from the horrid illness.

Thank you for you kind words .

I wish you well

Hi,

I am sorry to hear this. Even most doctors don't really seem to understand this infection.

I have met one doctor in 9 years who truly understands and has good knowledge about BM. It is not the same as VM though very similar. You just survived a severe brain infection. A life threatening brain infection. The brain takes time to heal. I know everyone is different.

I find it difficult to fathom how a doctor of any kind can expect a full recovery after two weeks. That just does not seem realistic to me. I could barely function at home after two weeks. There are long lasting effects from BM. Don't let any doctor tell you different.

It took me several months for an initial recovery. My brain didn't return to "normal" until long after that. Then a total and full recovery takes up to 10 years. I am not saying this to frighten you. But that is a fact. Now you will probably be functioning at a near normal level within months not years. Again, everyone is different. Your brain needs time and rest to heal. BM is a big trauma to your whole body but especially the brain. Stand strong and stand up for yourself. You are the only person who can. Only YOU know how you feel.

Best wishes for a rapid recovery.

From a fellow "swiss cheese brain".

You will be ok. Time and rest are your friends.

Earthfox20
Earthfox20 in reply to PRae

I wish I could find that one doctor who understands this condition. I feel sometimes that I’m the only person in the World who has suffered this way. Yet I know that is unlikely to be true. I’m desperate to find someone who understands the condition and can prescribe some medication and treatment so I can return to some degree of normality. I know I won’t walk again and I doubt I will hear again but I’d really like to lose all the neuropathic pain I get.

Landlord
Landlord in reply to Earthfox20

When you say pains are you able to explain where the pain is or how it feels...please,

I get lots of pain and head sensations but it's not straight forward to explain them

Chris

Earthfox20
Earthfox20 in reply to Landlord

A burning tingling sensation in my legs is the best way of describing it. All the way from toes to thighs. Knees feel swollen and numb. Head has no pain just a weird fuzzy feeling. Best I can do.

Nicolaram
Nicolaram in reply to PRae

Wow thank you for your wise words and words of encouragement .

My own doctor is being kind but my works occupational health doctor is putting the pressure on and actually said tiredness could just be in my mind .

I am 12 wks into recovery and yes feel I am slowly improving but that’s without doing anything physical or mental .

Thank you again

Hexy
Hexy in reply to Nicolaram

Get your (stupid I'll informed doctor to lookup the disease and after effects, then send you to a Neurologist, one who understands what your brain has been through!) It took me 5 year's. A brilliant doctor (now sadly passed away) a brilliant team of consultants Royal Free London. Who put me on day release 3times a week for 2 year's, after being in a contagious specialist diseases hospital for 2months then Royal Free 3months! What a brilliant team I had, I couldn't walk , headaches so bad I could scream if a pin dropped, I'm sure you can all relate to noise sensitivity? This is an invisible illness you need to get more information on your illness yourself as it would appear your doctor is crap! Try the Meningitis Society. It's a charity but with loads of information. Read up on it ,get your notes, send an informed letter to your employers. So it's in laymen terms. You may look ok but actually you are not at all. You need proper care, reading a lot of you who have had this recently, you aren't getting the best care, sad to relate. I had it 25 plus years ago then again then malaria, had fantastic support all round. It's so sad to see the decline of our medical (NHS) over the years.

I had pneumonia 2year's ago. Which was a sham performance too. I let them know it too.! Central Middlesex London. Eventually again through a consultant got the treatment I should have had. Unfortunately the idiot who drained my lungs, left me unable to walk because of the pain,my body went into shock! Anyway, do your own research keep a diary, daily pain ,how you feel, please get another doctor's opinion. 💜💜

I am 10 months post BM. I went back to very part time work 8 weeks post BM and only 2 half days a week. I ended up having 4 mini strokes in a week! I stopped working then and went back 3 months later the Covid shut work down. I am back now doing 2 half days n have tried full days but end up with headaches and terrible fatigue. Go easy. This illness is far more serious than I knew and recovery takes time. I am feelinfg a lit better but I respect my need tobtske things easy. Computer work gives me headaches.

They say lightning doesn’t strike twice. I had VM 25 years ago and BM nearly 2 years ago. 6 months off work first time but then very much back to normal with brain working well after a few months and back to a decent running ability. This time, not so lucky. Brain back to normal fairly quickly but body wrecked and no chance of recovery. Just wish I could find someone to help.

I do know that VM is not as aggressive as BM. But I also know that they both fucking suck. Although they say lightning doesn’t strike twice after a year of being “recovered” they told me to be extremely careful because now that you have been targeted by this infection you are more susceptible to keep getting it. Look into meningitis vaccinations (there’s 5 additional strain vaccinations that are on top of meningococcal) good luck with everything

Thank you, you too

I was pushing myself to work and couldn’t understand that my body and brain would never function the same ever again. I ended up running my body and brain so far down I ended up with a disorder similar to epilepsy. I ended up with very severe burns and no one at work believed me or could understand until I dropped to the floor in front of everyone. Someone behind me grabbed my head before it hit a bench and the floor which could have meant more damage. Do not push yourself. I found a doctor who helped me to understand that when you have a throat infection for example your brain attacks that part of the body to fix it but then to help it heal. When you go through a brain infection your brain attacks itself and because of the severity it can’t differentiate between infection and brain cells. After that you brain doesn’t work as well and has to repair the organ that generally does the repairing. You are the only person that can determine when you are ready if it doesn’t feel right don’t do it. It’s an invisible disorder which means it will always be difficult for people to understand which also means that the only people that know what you are going through is yourself and sadly all of us other survivors

Thank you that’s incredibly interesting reading , I tried 3 push ups last week and ended up in bed for three days .

I wish you well x

I was told to give myself 6 months to 2 years to recover. I am now 16 months post and I will probably never be able to return to work. I have memory problems, tinnitus, and Arachnoiditis. I am a registered nurse in the US. I was given disability. I don't want to depress you. This is a serious disease, you've been very I'll. Don't go back to soon. Give yourself time to recover.

Hi

Sorry to hear that, we are on the same boat. Im post meningoencephalitis may year 2017 with combination between two disease..till now im still struggle go back to work.,im try to practise with myself used my laptop do for some work unfortunately everthing is not smooth. My brain start to get headed after 2 hours sat infront screen..im worried if i get an offer for the job that require me to work in office and use screen laptop for long hour.

After the episode i has noticed my brain are not in good function like what i had done before..my brain are not strong enough to face day to day routine. I have to adjust my daily routine to cope with it. I wish u good luck.

Most of the replies you get from your question and the could be dozens, are, there is not time limit, you will probably never be able to explain to other people how your day is, even doctors don't get it, most G.P's only see two cases in there whole career, hospitals might see one a month, your work people will probably only have heard of it.

There is nothing printed out there to read I believe and no document you can give your work to try and explain.

It is a real question,

How do we explain to others..??

My family have been sound but I can tell that after two years post bm its my dogs that still lay down with me when I'm not functioning properly. Loved ones too get lost in the constant on going pain, exhaustion, memory loss,blah,blah,blah

It is just so difficult (sorry I'm just trying to be honest)

You know how you feel and even some times you will not no because its a new feeling. You can wake up sound and then a few hours later bang something starts inside and could last days, non of it makes sense.

I think I'd try and connect with your boss, I'm lucky I have my own business that people run for me because I'm basically unemployable due to the random locked in bed part, who would employ us ay, o and the state will offer you £75 a week, ye har,

Folks on hear will tell you to listen to YOU....

Rest if YOU want to

Doctors told me to sleep any time I felt like it so I do , I don't care on the time or place or what I should be doing according to a time table.

O and in answer to your question,

I'm two years in and walking each day is a wonderful challenge nut you know what, were hear still....

Chris

Nicolaram
Nicolaram in reply to Landlord

Wow amazing and thought provoking reply landlord , lots to think about in there.

It so good to know I am not being a fraud as I think some people think I may be playing on it .

Partner is great at the moment, maybe I should invest in a dog .

Thank again such a great read . I wish you well x

Hi Nichola,

I was hospitalized for 10 days with bacterial meningitis April 2017 and I was almost 12 wks pregnant. I was working at the time. I returned after 3 months on a part time basis bc I was still recovering and had very little energy. I was set to go on maternity leave in October but wildfires in my area added an extra week to my maternity leave. I had a healthy baby boy Nov 2017 and I did not return to work after. And I read some of the comments below, it is true that people see you on the outside and think you’re fine but you need to go at your own pace. Whatever you feel comfortable with. At the end of the day you have to be an advocate for your own health.

Best wishes,

Ashley

Thank you Ashley, wonderful news re your gorgeous son . Thank you for your reply . I wish you well x

Hi, please Do Not go back to work. You need at least 6 months off. I went back after 4 months on phased return and ended up being re-admitted over and over and it took me longer to recover. It was 2 years ago for me and up until recently if I was scrolling on a computer it looked like the info online was still scrolling when it wasnt. I constantly stumbled and ended up with black eyes. Joint pains, exhaustion. I know all about it. Your health and wellbeing must be number 1 for now. Work can wait. Listen to your body. You are the only expert of you!. Please take care of yourself and rest, rest, rest. You will feel better very gradually. Get that big sick note xx

You've received a lot of really informative replies. I hope they help. As one person wrote, the occupational doctor at work is paid to get you back to being a productive employee and he or she may never have had a bacterial meningitis employee. There are only 4000 to 5000 average cases a year in the US. I don't know what the rate is per population in the UK. Most physicians just don't care for someone like us often. Maybe you can show them these responses?

Also , this summer I am finally able to ride a bike, 17 months post BM, then I need a nap.

Best wishes in your recovery and healing.

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