Alone in the wilderness

I HAD BACTERIAL MENINGITS, EIGHTEEN MONTHS AGO.I SPENT SEVEN WEEKS IN HOSPITAL I HAVE NO REAL MEMMORY OF MY STAY, JUST MY FAMILY AND FRIENDS TELLING ME ALL ABOUT MY STAY.

I LOST MY SIGHT FOR A WHILE, I WAS UNABLE TO SPEAK CLEARLY, TALKING GIBBERISH MY FRIENDS TELL ME.

BEFORE LEAVING I WAS TOLD I HAD, HAD A BRAIN INJURY.

I CAME HOME FATIGUED, TWO STONE LIGHTER AND, AND SOME VERY SCARY SIDE EFFECTS.

MY MEMORY IS SHORT, I AM UNABLE TO HAVE LONG CONVERSATONS AND STRUGGLE TO PROCESS ALOT OF WHAT PEOPLE ARE TELLING ME.

PANIC ATTACKS.

I CAN PUT SOMETHING DOWN, I GO TO GET IT, IT HAS GONE, I AM UNABLE TO SEE IT;I WONDER ABOUT THINKING I MAY HAVE BEEN MISTAKEN, THEN I GO BACK AND IT IS THERE AGAIN, I HAVE NIGHTMARES.

I CANNOT COPE WITH TOO MANY PEOPLE AROUND ME; I STRUGGLE WITH CHANGES IN MY LIFE. SOMETIMES I JUST FEEL SO AFRIAD I WANT TO RUN AND HIDE.

EIGHTEEN MONTHS HAVE BEEN LONELY; DOCTORS JUST KEEP TELLING ME, I HAVE HAD A BRAIN INJURY AND THAT PART OF MY BRIAN IS PERMINANTLY DAMAGED.

I OWE A HUGE THANK YOU TO; CHRISTINE HUGHES COMMUNITY DEVELOPMENT OFFICER, GREATER MANCHESTER.

SORRY TO HAVE WHINED ON SO MUCH.

12 Replies

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  • Sorry to hear you are still having these problems, it takes quite a while to get over this illness, I had bacterial meningitis 6 years ago and as a result had to have both legs amputated below the knee, I went back to work after 11 months doing a few hours a week and it has taken me 5 years to get back to full time hours. I experienced different feelings after this illness I questioned why I had survived when children younger and healthier had died, but I also made up my mind to get back to as normal as was possible as quickly as I could, I was walking unaided within 6 months, I still have memory issues but I carry a small notebook and jot things down.

    Have you any local charities/support groups who could offer support, and don't forget the meningitis trust is always there to help.

    Try to be positive and take small steps, look back and see how you are improving week on week.

    Take care and best wishes

    Mick

  • I am so sorry meningitis stole your legs. What amazing strength, both physically and mentally.however, I am sure you have had and probably still have, dark days.

    I have all my limbs; I lost my sight for a while, hearing poor; memory awful. thanks for note book advise; my daughter has bought me several, basically because I put them down and always forget where. I also struggle moving around in my wheel chair, when i came round in the ICU, I had forgotten I had,lost the use of my legs, following an accident. I had t re-learn how to get around.I am taking small steps and in time Iw ill have learned how to live with my Brain Injury.

    thank you again mick.

    Very best wishes to you, and keep going.

    Gill

  • hi roddydoddy2006

    i am so sorry to hear of your health issues,but i have the same problems as you plus i have diabetics which i had very mild before Bm turned in 2 with insulin dependant on the 23 November it will be 9 years and counting If was not for the love and care from my wife i dont know where i will be

    When i came around in hospital after 2 weeks itc i to could not talk and was deaf .My wife and i smile when we get the notes out we wrote to each other i will not bore you with the rest and always remember every one is different and i am sure you will get to your next level soon

    best off luck

    if u fancy a chat some time i am on yahoo and msn and you can have my addys

    thanks for your time and good luck

  • HI, thank you for your reply. How nice for you to have your loving wife, to love support and tell you off.

    I have a daughter, who founds it hard to see the change in me; I guess i scared her when I was seriously ill; then to get home and struggle with speech, hearing and sight problem, thankfully my sight has improved slightly, my hearing, it better,except when I am being told off for forgetting something. I have my best friend with me day and night; he is my beautiful JackRussel,Rodney. He never judges me, he nevr shouts at me; he just helps me face each day. I do not know how to msn or i would chat.

  • Hi Roddy, so sorry to hear of your experience -I too had bacterilal Meningitis and septicaemia in Jan 2008 ,so it is coming up to my 5 yr anniversary.

    I too felt dreadfully alone,until I contacted the Meningitis Trust,who have been a real lifeline to me.I talked to helpline nurses,who then put me in contact with 1-2-1 buddy and later I had 2 courses of counselling.This foru is also great for getting in touch with folk .

    For me, my brain injury was not picked up upon,apart from the damage t omy balance.It was only when I came home that I realised I had forgotten how to use computer,microwave,TV and that no matter how many times I was shown,it didnt stick and Id forgotten the next time!This is all short term memory(called working memory) and it makes it really difficultto function when its not working.

  • oops,posted by mistake,before finished!

    I have a blog post on Memory problems after Meningits -just click on blogs and you will see it.I will not repeat myself ,but hope some of the tips and websites are useful.Brainand spine.org.uk have excellent links to help with memory problems.My most useful aid is to carry a notebook and write everything down.

    Like you I also struggled with emotional problems -real ups and downs.(check out my story on Meningitis Trust website(under Gillians story) Again,too long to repeat!one minute I felt so blessed to have lived ,the next minute so down I wished I hadnt.I at this time had no one to talk to,especailly about my depressed feelings as when I did,everyone would just tell me how I was lucky to be alive,This then sent me into a downward spiral as I knew I was so lucky to be here ,when others died.The counselling from MT was my lifeline and helped me to make sense of what happened and move forward.The counsellor doesnt judge or even advise,just listens and acknowledges your suffering.I had mine over phone as I was housebound.Perhaps counselling would help you -its free.

    I am happy to say that the emotional liability(ups and downs) has no levelled out and I generally feel "normal" since the counselling.I also dont need anymore to keep re living the experience( which was more traumatic as I was misdiagnosed and sent away from A and E).

    You have had a life threatening illness,which has damaged your brain and it will take a long time for you to recover.Without being pessimistic( as many do recover fully) you may have to live with the afrter effects and adjust to a very changed life.I am now on crutches and wheelchair due to the damage to my balance,and struggle daily with fatigue,memory problems and being with more than one person at a time.Also I am no longer allowed to drive,so this has made me totally housebound and dependednt on others if I do want to go out.Howver ,5 yrs on.I am much better emotionally and hope that I can encourage others - you are never alone.Hang in there and I do hope you get some support from this website and the Trust.

    Best wishes,Daffodil

  • thank you for your comments. i have read your story, it is a credit to your strength and courage.

  • Hello daffodl.I also like you have short term memory loss, thank you the name you put to it; working memory.

    My famliy sometimes become irritated, which only makes it worse. Do you start a sentence, then mid way totally forget what you are actually talking about?.

  • Hi Roddy, I too am so sorry to hear how you are. I would reiterate gettingin touch with the Meningitis Trust, they truly understand your predicament. I had viral meningitis 3 years ago, thank goodness I dont have any loss of limbs, or deafness,but still some memory problems and they were much much worse. So you see it does get better, its just I think that the brain takes longer to heal than broken limbs and you will I hope one day be able to be amongst more than 2 people together. I went to a party on Saturday night and its the very first time I have been comfortable with more than one person talking at a time. I think panic attacks are part of the problem too... I had some counselling and was told that children often develop behavioural problems post meningitis whilst adults are more likely to have anxiety... I certainly had and it sounds as though you do too. Hang on in there, we have experienced similar and are out the other side of it now. Its very hard I know when you are there in the midst of the chaos, but just keep talking to anyone on the blog, or the Trust, we understand where you are right now. I wish you future joy in your life Roddy.

  • Many thanks for your reply. It is good to know there are others who know what it feels like to find it difficult to do the basic daily tasks. when I left hospital, I was never given any information or contact details of organisations who could help. My neurologist just told me,I have a brain injury and unfortunately, due to the severity of the infection,It was unlikely i would ever be as I was Pre Menningitis.It was good you managed a party, I hope in time, that I too will be able to cope in a crowded room; for now it is just me and my Beautiful dog, rodney, hence my name roddy!.

    I have had people who cannot understand why I have not lost a limb;I had no comment as It was truly not worth one.

  • hi again rod

    i think i understand how your daughter must fell

    My youngest son (11) at the time only came to see me once in the first month so i am told as he came and had to gowen up mask etc and after the first time could not face it again untill i was moved hospitals My wife mother and sons had to take tablets as they where the only people to see me the day before and it turned all fluids bright orange again very off putting

    i do hope things are setling down for you and if u ever want to chat in pvt let us know

    thanks for reading this

  • doc are great, but they cannot know it all, as you will read from many people on this site, fear is part of the healing, if you was in the wild and been ill, you would want to stay away form everything that is nature, been told you may have brain damage was not the best thing to be told, like universe we do not know it all, but we can help our selves by taking time to heal, by taking each day as it comes

    MEMORY IS SHORT honey this is normal, and do not fight it, like a computer it will take time for you brain to re bot

    I AM UNABLE TO HAVE LONG CONVERSATONS AND STRUGGLE TO PROCESS ALOT OF WHAT PEOPLE ARE TELLING ME. and again this is normal, do not rush, there is plenty of time to heal and get to know people again

    PANIC ATTACKS. been there, again this is normal, you can gentle breath in a paper bag this will help, put ice on back of your head, panic attacks can be bought on as we hold our breath when scared, i found vanilla spays helped me, and i was told you cannot die from a panic attack, that helped me relax, recuse remedy form boots is also great for this

    I CAN PUT SOMETHING DOWN, I GO TO GET IT, IT HAS GONE, I AM UNABLE TO SEE IT;I WONDER ABOUT THINKING I MAY HAVE BEEN MISTAKEN, THEN I GO BACK AND IT IS THERE AGAIN, this is so normal, remember your poor brain in fact was cooked with so much heat, so some of the path ways are a little lost, but in time CAN heal you just ave to take each day as it comes

    I HAVE NIGHTMARES. this is ok, your mind is playing tricks and will kick in try going to bed with not coffee and stop eating after 7pm, have quite music in the back ground and a night light this will help

    I CANNOT COPE WITH TOO MANY PEOPLE AROUND ME; and why should you you have been ill, stop blaming yourself if you had scares all over your face people would understand but as they cannot see how bad the illness was, they will not understand, you must let them know how you feel, do not do this alone

    I STRUGGLE WITH CHANGES IN MY LIFE. SOMETIMES I JUST FEEL SO AFRIAD I WANT TO RUN AND HIDE. if you lost your sight you would have the same fear, if you lost yoru legs it would be the same, as people cannot see how ill you have been it makes its harder to get on with life

    EIGHTEEN MONTHS HAVE BEEN LONELY you will never be alone as long as you use this site, talk to others help others this will be a BIG factor in helping yourself, its been 16 months since my VM and i have had a few illness after, but i heal myself by been there for others and in time so you

    give it time, take no notice of what doc says, only you know how you feel, take each day as you go

    take vit c and zinc, eat well, and life will bet better honey xxxxxxxx

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