Does anyone really know how long the recove... - Meningitis Now

Meningitis Now

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Does anyone really know how long the recovery is? I am 6 years in, and still have a lot of health issues. None of my Drs. Seem to know.

Mypain profile image
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Mypain
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-emma- profile image
-emma-

Hi! It's been 3 years since i had pneumococcal meningitis and i too have ongoing health issues. My gp turned round and told me last year that although i'm having difficulties i have been successfully treated, that there is no infection and that any problems i now have are unfortunate but basically tough luck.....So i'm now unemployed with two young kids(6yrs & 3yrs) and dwp wont pay any benefits because they say I'm fit to work even though i have memory problems, severe residual headaches, severe pain in my joints which I've now been told is arthritis...

I don't think there is a recovery period, like a length of time it takes you to be back to 100% as you were before meningitis....I've reached a stage where i'm no longer recovering if you know what i mean, i feel that how i am now is how i'm going to be for the rest of my life..

Mypain profile image
Mypain in reply to -emma-

Thank you, I figured but thought just maybe there was an answer. Oh we'll, one day at a time.

paul1224 profile image
paul1224

hi

I am so sorry to say i don't THINK there is a answer to that question

on the 23 Nov i will have had MB 9 years and i am still suffering in a big way

i so wish there was a answer and i do hate to give bad news

All i can add is good luck to all and take it one step at a time and dont get upset if sone days you move back 2 steps

good luck to all

daffodil profile image
daffodil

Hi - I would say exactly the same as the other posters.I am almost coming up to my 5th yr after bacterial Meningitis and although, I thankfully survived,I live daily with the after effects.I divide my life into before and after Meningitis and though I also have other chronic health problems ( M.E) it is the Meningitis that has disabled me most and has changed my life most drastically.I hva emultiple health issues - loss of balance so dependent on crutches and wheelchair,short term memory problems as well as some long term loss,difficulties retaining info and learning new info,migraines,visual disturbances,neuropathy, arthritis like pain and stiffness now -the list seems endless and I am always at Gp for something.

It is difficult sometimes not t get overwhelmed with so many symptoms.I also can compare with the experience of having ME more than 10yrs and at least since my Meningitis I have had some recognition from medical establishement of the seriousness of the disease.My Gp also has been very willing to try new treatments eg to help with vertigo,whereas for ME they are reluctant to trial drugs at all!

I try just to take one day at a time and not to look back at what my life was before or to dare to hope I will ever be recovered.I try to look at the many things I can still do and enjoy,even if I now rely on others for care and support.I think the key to peace of mind is to try to accept yourself as you are right now but also strive to bring more joy into your life.One of my biggest joys is reaching out to other eg through this forum or doing my MT 1-2-1 volunteering.It gives me a focus and makes me feel that through sharing I can help ease the suffering of others.Sometimes just answering a question can mean so much to a person who feels very alone.Its one thing that Meningitis Trust does so wonderfully -making you fell you are supported at any time after Meningitis.

Mypain profile image
Mypain in reply to daffodil

Thank you, I truly feel blessed to have found this site. I am so sorry you suffer as much as you do, but believe me I understand. I would NEVER wish this upon anyone, but it sure is nice to know there are people who really understand.

daffodil profile image
daffodil in reply to Mypain

Yes - its good to know people do understand.Th MT provides very varied support,so there is always something that will help be it sharing on a forum,counselling,grants,helpline,family days.All free and all due to the generosity of fundraisers and volunteers - so whatever your financial c ircumsatnces are,help is always available.

Take care and keep posting.

Mypain profile image
Mypain

Daffodil, thank you. You seem so upbeat. What a fresh breath of air you are.

Tiga profile image
Tiga

i sometimes blame the VM for my illness, but i have to face facts, my poor body had enough, ok at the end of the day my brain was boiled liked a pickle egg, so there will be times that things will hit me harder, also i am getting older so i have to take that in as a factor, since my VM last year, had 2 lots of pleurisy, one heart opp, colds , aches and pains and back ache form hell, but i now look it as ONE DAY AT a time, what ever comes up, i just think hell i got threw VM and lived and loss no limbs etc, so bring it i can handle any think, ok get a little bored with it and having to hide everything at work and from mates, as i am sure they are as fed up as i am. so all i can say is take each day as it comes, and think to your self, i can see i can hear i can walk, so i must be doing ok haaaaaaaaaaaaaaaaa, and also treat yourself, when you are down, me it is a big bar of choc haaaaaa

good luck hon

iaveadream22 profile image
iaveadream22

i fully understand your sypmtoms and hope you resolve them one day best as possible .

I am iin My 50s now and sadly about 1 year ago i had My 4th Attack of meningcocal Meningitis ( Yes 4 so I guess i should be pleased Ive survived I suppose ) As a summery i had my first 3 attacks in childhood and had appeared to have had little effects. Sadly 30 year on and I was again in hospital in a coma with Bacterial Meningitis again . Regretfully this time I have suffered with complications and to be honest plague My life . The main issues are severe Memory loss which is so embarrishing as i will remember some ones name or information but then its lost and i dont know whom im talking to or even some basis knowledge . Another complication is My hearing is impaired impaired and I seem to have difficulty with my breathing from my nose and i hear sounds in my ears , which is difficult to explain . I also suffer head aches freaquently and take regular pain killer , co codomol ,. I feel it necessary to only work part time afew days a week as my energy levels are poor and im often tired . I also believe my eye site was effected but this is difficult to engage due to my age early 50s .

I know Meningitis can effect people in different ways , however i would appreciate any person who has suffered or has medical insight in to this condition to email me back.

Thanks Kindly

ignoreit profile image
ignoreit

It's been 35 years since my MM attack, with complications of DIC. I was 33 yrs old.

The first 6 months in the hospital were hell. I was paralized and had EXTREME pain in my legs (with numerous large coal black indentations) and my coal black debrided "toes" (what was left of them.)

After 6 months in the hospital, I was released to my apt. I was 33 and divorced. Every morning I put Baggies over my feet, to protect them from dirt as they were still spurting blood and very painful. I wanted to use a walker but my doctor said I shouldn't have one because I would become dependent on it. He was right...I struggled without one but after 6 more months, I was able to return to work. At this time, the pain was less and I could tolerate white socks and sandals that didn't touch my toe area. (This was 1 year after my attack.)

Two years later, I was promoted to a position that required frequent air travel. (I NEVER complained to anyone at work about the pain...I wanted job promotions, not pity..I wore dress slacks everyday and no one seemed to notice my weird socks & sandals, even in the winter!

I worked as the Nat'l Sales Mgr (Fortune 100 Co) for 5 years, requiring constant travel. All those years, every single day I wore those horrible white socks with sandals.

Tired of the constant travel, I worked at 2 additional companies...always with upward mobility. Always with leg & foot pain...always with white socks & sandals.

Each year the pain dissipated a little. I retired at age 60 and started dance lessons (tap & jazz). I had zero background in dance. At first I took only one class. The pain was VERY noticible to me but I soon discovered that our dance numbers were very popular and audiences wanted to see us!

So that was STRONG motivation to keep dancing and try to ignore the pain. It's worked! I now take 11 dance classes each week. Our dance troupe performs frequently and we even competed to the second level on "America's Got Talent" a few months ago. I still can't wear high heels (heels push my weight to my still painful toe area) but I dance almost every day.

TIME is our great Meningitis healer. My advice, after 35 years, is to just keep pushing yourself. My pain NEVER INCREASED! Each year it DECREASED and that made life wonderful! Don't give up...with time, you CAN live a wonderful & normal life!!!!!

Punkysticks profile image
Punkysticks

Hi there...

I too had BM when I was 11/12 ...it left me paralysed for about 12 weeks and all sorts of long lasting effects...I am now 48... And still have a lot of after effects.

The biggest help I got was from a cranial osteopath called Stuart Korth in Tunbridge Wells in Kent. He was able to get me back walking and to help with my balance and co-ordination problems. I don't know where you live or how old you are...but it wold be well worth looking for a good cranial osteopath in your area...and also...I started rowing about 4 years ago...which is a brilliant all over body workout...and non-impact...and this has transformed my body. And this year I took on a challenge to row 2012 miles on a rowing machine which is nearly over (and I started on jan 1st) and yesterday I completed rowing my 2nd 100km (62 miles) in 8hrs.

So...there is hope for all of us...you just have to believe in what you can do.

Good luck

Darren