It is one year down the line this month after a terrible experience of bacterial Meningitis. I have had every nasty experiences within these previous 12months. I have had
Meningitis
Septicaemia
Encephalitis
Ischaemic hands secondary to Septicaemia
Gangrenous feet secondary to Septicaemia
Pericarditis secondary to Septicaemia X2
Bilateral Loss of hearing secondary to Septicaemia
Multiple debridements on my feet ( x11 )
Reconstructive surgeries with gracilis muscles
Bilateral Cochlear implant surgeries
Vestibular dysfunction
9 months of extended hospitalization
My girl friend dumped me
I lost my job because I would be unfit to continue with it
While in the hospital my apartment was broken into by burglars
I lost all my valuables
I lost my apartment due to my newly acquired disabilities and could not pay.
One year on, I am still counting my woes, have had 52 out patients appointments between 3 hospitals. I am yet struggling to walk and take care of myself. But I am still alive. I am still hopeful and enthusiastic with life. I refused to surrender. All these horrible experiences could not kill my dreams and aspirations in life. They made me stronger. I am a tough cookie. I don't know what failure is. I am beaten down but I know I will rise again. It's only time will tell. God knows that I Will survive.
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vasco
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Thanx for your comment. I think I have every reason to be happy. I have come out stronger. Yes, I can! And I know you can too! We are fighter not quiters ...
Vasco you are an amazing man with an incredible personal strength. Previously when we blogged we identified some similarities in our experiences but seeing you list, yours clearly have been far more incredible and physically truamatic than mine. However I won't minimise mine as they have still been devasting to me emotionally, my life and the person I was before. However, like you I am a strong character and am fighting back. I have recently been informed my adopted son has a half baby brother who is needing to be adopted. And yes I am going to determindly try my upmost for him to join my son as a brother and me be there mum even though the odds are stacked against me now because of the nasty bacterial meningitis.
Aaawwwhhhh strawberrycream! Thanx so much for your kind words. I am really emotional with regards to your intention to adopt the little angel. Regardless of your difficult situation, you still spare a thought to that little boy! You are incredibly resilient. I love your spirit. You are a fighter. I hope and pray your intention be fulfilled and your joy would increase tenfold. Keep the good work, you will never regret it.
Hi Vasco. Thanks for your encouraging words. People who knew me pre BM have since said I had lost my sparkle and my fight. I think I did for quite sometime but now have another child to fight for as I've never been very good at focussing on myself as seems to self indulgant to me. Have lots of hoops to go through but I hope I am successful for my son and his little brother to be united with me as there mum. I truly believe that when I was unconsciousness in the coma and ventolated for those 3 weeks, it was somewhere in my deep unconscious that my son who I had no intention of leaving enabled me to fight back and not be taken by the BM even though the odds were that I wouldn;t survive. I too have lost my job and wanting to adopt again has given me back a purpose and goal. I took my son away to Center Parcs in the October school hols for the 1st time by myself and we had a great time even though I had to manage it in very different ways to before.
Wow -amazing.I wish you luck in adopting this little boy.That will be a great help to your other son.Your own strength and courage Im sure are keeping you going .Giving out love is what we are here on earth for!
Meant to ask how DLA apploication going?
I wish there was some way of instant messaging on this forum?I personally find it a challenge to remember what Ive written and where and dont want to go away from original question,blog too much.
Hi Daffodil. Am so sorry I haven;t found time to reply to your personal emails. Got a bit caught up with other decisions and plans to take my son to Center Parcs in the October hols. This was the 1st trip away by ourselves so I was mega anxious about all the planning, packing and managing. We stayed in the one with a hotel and I avoided adding the pressure of self catering as know that would have been too much and had to observe rather than too much active participation! But it went extremely well and was a huge boost to my confidence and my perception of my parenting post BM. Have to admit that the DLA forms got sidelined and I missed the deadline. Have put them aside for the time being as I can't do too many things at once and I have another priority now which is far more special too me if I can acheive it! Yes I agree this site does get a bit muddly at times like now when you answered me through what was initially a blog to Vasco.
One amazing man!! Had pnuemocal meningitis + other things about 2 yrs ago. It really does change one's life IF you let it. Keep at it as I'm sure you will acheive all you want.
Thank you for your comment. I am able to come through because of love and support of people like you. I would not let it beat me to ground. Hope you didn't let the pneumococcus meningitis have it's way? You are a trooper!
Vasco - I was just wondering how you werer getting on ! You are truly inspirational ! like strawberry cream has said,when I read of your trauma I feel humbled,but we all cope with our traumas differently.You have coped with horrific results ,others are totally devastated by minor after effects -but thats what The Meningitis Trust is here for -to let everyone know that they are supported with whatever worry they have as result of Meningitis.
I get my strength from my faith and the knowledge that whatever I have to face I will be given the inner strength ( or else emotional and physical support from others) to get through it.Hopefully ,I have come through Meningitis as a better and more empathetic person.
Having suffered so much devastation to your life through Meningitis and still not giving in,you are an encouragement to us all.
Hi daffodil , you are absolutely correct. We all are fighters. Meningitis is a life changing disease. No two experiences are the same. We all have come through it. Your constant bloggings have helped me a lot to realize my own after effects and deal with them one by one. Your story gave me hope that my tomorrow will be better than today. Thank you for the work you are doing in creating awareness for the effects of meningitis. You are my hero. I always believe that I will bring some changes to some people. I have not achieved that yet. I must fulfill my dream.
Hi Vasco -though you may not realise it you are already bringing changes to peoples lives !Your honesty and bravery in not only fighting this disease but in having the courage to share is both humblimg and inspirational.
I would say to Gregorys girl to keep on being patient with your husband.Talking is not easy and especially not for those who wouldnt normally talk or express their innermost feelings and it takes alot of courage! It took me more than a year before I could even work out what had happened to me and to be able to put my experiences into words at all and I am an articulate and talkative person!
Its great you have found this website and as Vasco says,even if your husband could read the blogs( I spent 6 months reading but not daring to post!) it would help him see he is alone and neither are you.Hope you will feel able to keep looking and posting -there is a great group of regulars on here!
Hello. To everyone who is using this site, you are all amazing, and I feel humbled that you are all happy to share your experiences, to encourage and inspire. I am the wife of someone affected by pneumoccal meninigitis, it lives with us still, my husband isnt the sort of man to talk very much, he deals with the after effects in his own way. Its tough at times, keep well everyone. x
You are welcome to the site. I'm so sorry to learn of your husband's illness. I could really feel with you as someone living with a meningitis victim. It could be hard at times to deal with the mood swings. Your husband went through a lot. Please bear with him. Sometimes, it's really hard to put what one went through in words because the experience is so deep and personal. I happened to me at the beginning until I came on board to this site and read other people's experiences too. Then I learnt that I am not alone. Your husband needs understanding and assurance now. If he could visit this site and read other people's experiences, it might help him a lot. You are quite amazing to be standing with him all the way. Keep supporting him and you both will win. I wish him well.
Thank you for your kind words. I am glad that my experience help you to worry less. It might seem too much to go through all these, but I am forced to live each minute as it comes. Easy does it. Believe me, you got an incredible power within you to withhold any trial moment that comes your way. Special thanks to my friends and colleagues and meningitis trust. It's easier when you have someone to lean on. You have made me proud ....mwaah!
Hi Again Vasco. Thanks for your encouraging words, yes it very hard at times, he is fortunate in so many ways, his treatment starting with NHS Direct, Ambulance Service and our local hospital was excellent, discharged after a week to continue his recovery at home. Then, at that time, no follow ups of any sort, I am just hoping that the the team at the Menigitis Trust and their volunteers can change this, as family and friends we can play our part too. Thanks once again.
Wow! Your husband is lucky he had a timely medical intervention. He must have been one of the lucky few who would have a full recovery with time. Still, meningitis is a life changing disease. There is no 'full recovery ' to it. But I believe his condition would improve with time. Lucky enough he had you as wife and family around him. It's a pity there is no follow ups after meningitis except when you have pronounced disabilities. But I believe every meningitis victim is disabled in one way or the other psychologically and emotionally. Please do stick by him, you will win. Thank you!
I was having the best years of my life (age 33) when I was suddenly struck down with Bacterial Meningitis. First came the chills, then the extreme headache. I went to bed. A few hours later, the pain in my legs became unbearable and I called an ambulance. Fortunately there was a phone by my bed because I was unable to walk (kept falling down.) I remember pleading for pain relief in the ER, a slew of doctors around my bed, and a kind nurse who kept telling me that I would receive a pain shot soon.
I awakened in the ICU days later. The nurse said I had been in a coma for 10 days. I was unable to move and the pain was horrific, especially from my waist down. The doctor said I had Meningcocci Meningitis with the serious complication of DIC. (Known in the ER as "Death Is Coming.") I had beaten them both but there was still a good chance that my legs would have to be amputated. I had seen a movie once where a victim's legs had to be amputated because (among other reasons) he couldn't feel his legs. Well, I could certainly feel MY legs...the pain was truly unbearable! So I asked the doctors to WAIT on amputating. 6 weeks later I was still in ICU, my leg pain was still horrific, but now I was able to move my hands. The doctors would come in and make me "dangle" my feet over the side of the hospital bed. This was even MORE painful. About a month later, at my request, I was moved to a normal 2-bed room. During my entire hospital stay of 6 months, I was in an iron lung type contraption that kept the bedding off my legs...the weight of even one sheet caused overwhelming pain..Every few days my doctor would come in and debride my toes...without medication. I would bite on a washcloth while he cut away. Afterwards, my whole body would shake for hours.
One day the nurse apologetically said I was going to be taken off all pain medication, in order to prevent any possible addiction. All I could have was Tylenol. Yikes!
Soon I was released back to my apt. Newly divorced, my parents gave me $1000 and said if that $ ran out, I would have to move in with them, because they could not afford to just give me money.
Of course I understood and began preparations to return to work in about 6 months. (I had some savings in addition to my parents' $1000)..For those 6 months, I shuffled along, wearing aluminum foil on my feet because I couldn't tolerate the pain of even large socks.
The 6 months were up and I was almost out of money. So back to work I went. I NEVER let anyone know I was in extreme pain and kept add'l socks with me so I could change them whenever blood appeared on my socks and sandals. I couldn't let anyone know that I was in pain because I was determined to receive many promotions and become the first female executive in my company (a Fortune 100 Co.) I wore overly long slacks and no one really noticed my toeless bloody feet.
I've told you all these details because I want you to know that in spite of Meningitis & DIC, I DID become the first female Board Member .& went on to many career successes.
I soon remarried and have led a wonderful, successful life. Through pure determination & a refusal to be depressed, I'm now retired & DANCE in a jazz & tap troupe. We win international dance competitions and even competed to the second level on 'America's Got Talent'. We placed in the top 400 numbers out of over 100,000 entries. No, I can't dance "on my toes" but I take 11 energetic dance classes a week and no one ever knows about my 'handicap'.
Your Meningitis pain will decrease each year! I'm 68 and move like someone 20 years younger. How? DETERMINATION & a REFUSAL TO GIVE UP! I still have pain...but you will learn to live with it and ignore the pain MOST of the time. Stay determined and prepare for a full, wonderfully productive life!!!
Wow wow ...amazing story! Great personality you are. I found your experience incredibly. I like your user name 'ignoreit '. That's the right attitude. You didn't let the awful meningitis hold you down. You are a fighter and inspiration to me. Your story gives me hope that all would be well, only time is the healer. Your determination pushed you through to attaining your goal as a female executive in your line of career. That's an incredible feat. How I wish my determination to survive and get to my life's aim would ever spur me on. No worries, I hope to get there. One day at a time. I surely will. Thank you again. Stay bless
Admire your attitude , but cant be easy either. I also had Meningcocal Meningitis 4 times in my life and the last attack last year left me with complications, also. Hearing issues, Memory loss badly , and tiredness and head aches . I wish i had your vision, as its getting me down. Also not impressed with the national health as i feel isolated .
I could imagine how you feel. One time of meningococcal meningitis is horrible, how would 4x be? The fact that you've survived it all shows that you are a fighter. I know it could be really hard times. It's a pity that many people wouldn't know what meningitis survivors pass through in their daily life. It's not easy. But keep hanging in there. You have gone a long way. Its a shame nhs doesn't have any follow up support after discharge. But we wouldn't keep waiting for them. This forum I have found helpful as we share our experiences and draw strength from each other. Chin up! You have won. You are a trooper
Please don't feel that I'm being critical of you...I'm NOT! I just want to give you the benefit of my experience of being 35 years post-BM. You stated to ihaveadream, "It's a pity that many people wouldn't know what Meningitis survivors pass through in their daily life. It's not easy."
You've spent recent months going through complete hell and when people ask you about it, you of course want to talk about it. You're PROUD that you've made it this far and you want people to know that you're tough!
Don't-do-it! With the exception of your medical staff & this Meningitis site, don't talk about what you went through. People will ask you questions because they really ARE interested. But they're interested in relation to THEMSELVES. Notice that one question that ALWAYS comes up: "How does somebody get it?" The more horrendous facts you relay in your story, the more frightened (for themselves) they become. I know it's not fair, but the thought of you will now be unpleasant. So soon they will end the relationship/friendship.
Don't blame them...it's just human nature for people to want to be around healthy people..
So over the years I learned to make light of what I endured: "Oh I can't wear those high heels because I had Meningitis A LONG TIME AGO...but everything's FINE NOW! No problems!" Then change the subject. (Most people think you get Meningitis from mosquitos...let 'em think it by changing the subject.) NEVER feel embarrassed that you had it...just skim over the subject.
You may feel that this approach is dishonest...it isn't...it's just smart. Remember that 99% of people are self-absorbed. Accept that reality and act accordingly.
The sooner you stop talking about ANY PHYSICAL PROBLEMS OR EXPERIENCES caused by Meningitis, the sooner your life will go back to normal! It REALLY WILL!
I totally understand where you are coming from. I really do. It's just that some times you really have to explain your situation. For example, at the moment, I am waiting to be rehoused. The social worker and housing officer bundled me into a very tiny bread and breakfast room without any space for my wheelchair. The toilet and bathroom facilities are way out of my league. How could I cope in such situation? I am still on 13 different medications 4times a day. How could I live on sandwiches as for for god knows when they would be lenient enough to house me. Such situation warrants you telling them what you have gone through. It's frustrating when you see yourself in such situation like myself. I have been discharged since last 6months but yet my accommodation is yet to be sorted. People in charge would not care what you are passing through. I would say that the ordeal i'm passing through now far outweigh what I suffered in the 9months I spent in the hospital. It's ain't funny at all. But I have to keep pushing. I've got no one to do it for me. It's really sad
I'm so sorry Vasco, I didn't realize that you are still in the VERY EARLY stages of your recovery! You're absolutely right...now is the time for you to fight for every single "aid"! And yes, you have to fight via sympathy rather than anger...and that's an ADDED burden!
When I was paralized and still in the hospital for 6 months, I was soooooo pleasant towards the staff, even tho my pain was overwhelming. Is that because I'm such a sweet loving person? Hell no, it was because I was 100% dependent on the staff and figured they'd ignore or "punish" me if I annoyed them. The nurses used to come in my room for their breaks...because I treated them like royalty. It was a whole different scene when my parents (3 hours away) came to visit: "So how are you feeling today, sweetheart?" "How do you THINK I'm feeling with all this..." Yep I would lash out at them because I knew they loved me unconditionally and wouldn't do anything that wasn't in my best interest. MY PARENTS received all my pent up anger towards this horrible disease that I did nothing to deserve!
So you're absolutely right Vasco, it's too early for you to be concerned about relationships/friendships. Now is the time for you to get your living situation in order...so OF COURSE you need to inform your 'caretakers' constantly what is & isn't working.
I bet you would hear my sigh off relief fromwhere you are now. Your last sentence did the magic. I haven't got some one to bear my pent up angers. I only open up my frustrations to my counselor. I can't wait for the day all these would become a fairy tale. I have to do my best. I have promised myself not to be broken by this situation. One day at a time, I would get there. Thanks for your encouragement
I'm sending positivity your way. My son fought bacterial meningitis this year, bilateral hearing loss, bilateral CI surgery, lost a year at school, and is currently relearning skills he had previously mastered. I will tell him about you to inspire him.
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