Oh! So much emotional as I type these words. It is so fresh in my memory how by this day, two years ago, I was still lying on my backside for more than two months, at a spot, thinking whether I would walk again or not. I would look down on my feet which were rotten and dying off each minute that passed and inconsolably cry myself to sleep as I was totally helpless of my situations. I had been struck near dead by bacteria meningitis and septicemia (meningococcus septicemia to precise)
It pained me more, my situation , because it could have been prevented, all the suffering and pain I went and still going through, could have the paramedics acted rightly and fast too. Just 28hours before rushed to hospital unconscious, I had called ambulance to take me to hospital cos I was sick. The paramedics after conducting a quick health Check on me, recording BP 95/165, heart rate 115 per min, temp39.1*, advised me to rest instead and refused to convey me to a&e. By the time I was found unconscious and unresponsive by a friend, the disease had done its worst damages. I was admitted to A&E with:
1. Acute meningo-encephalitis
2. Myositis
3. Rhabdomyolysis
4. Acute kidney damage
5. Sepsis
I was left to fight for my life in hospital for a total of 9 months, during which I suffered more complications secondary to meningitis and septicemia
6. Ischemic contractures of both hands
7. Gangrenous feet resulting in 8 toes amputations, feet amputations , 11 multiple surgeries, a 20 hrs feet reconstruction surgery with gracilis muscle flaps
8. Bilateral profound sensori-neural deafness
9. Bilateral cochlear implant surgeries
10. Osteomyelitis
11. Double episode of Pericarditis
12. Extensive rehabilitation period.
But today, 26months down the line, I'm proud to say that I am a survivor. I can walk on my too feet again with clutches. I can hear sound again with cochlear implant devices. I can look back to those painful moments, depression, tears and sorrowful and lonely periods and say I have had it all. I will not talk about the psychological trauma , cognitive complications, and mental anguish I passed and am still passing through.
Today, I am still struggling with
1. Hearing problem
2. Vestibular dysfunction
3. Oscillopsia
4. Neuropathic pains
5. Phantom limb pain
6. Without a wife
7. Job loss
8. Apartment loss
9. Endless out patient appointment in 7 different hospitals between 9 different departments
10. So much psychological, emotional, cognitive and mental problems
I don't know how or what to feel. Should I feel happy and triumphant or should I feel sad and broken? Should I be grateful or feel depraved? Should I celebrate for victory gained or should I mourn for my loss of person I used to be? I don't know what to feel. So, I ask myself... Is this improvement or what? Perhaps you tell me :!
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vasco
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Wow Vasco, you've really been thru a lot! I too had Meningococcal & septicaemia but I also had complications of Disseminated Intravascular Coagulation (DIC) which was the worst part of my condition, the doctors told me. Most of all I remember the EXTREME pain! If one of the nurses accidently just touched my bed (not me, my bed), I SCREAMED in pain!!!! I was under an iron lung-like contraption because I couldn't tolerate the pain of a sheet. This was for 4 months in ICU.
Then I spent another 2 months in the hospital.
I was losing my boyfriend so I stupidly begged my dr to let me leave the hospital before I should have been released. He RELUCTANTLY released me.
Well, I lost my boyfriend anyway. I learned that people don't want to be around "sick" people.
I had 2 more "boyfriend" situations that failed and I learned to not talk about my medical problems. This was not easy as I was scraping along with aluminum foil around my feet because I couldn't stand the pain of ANYTHING touching my feet. (A really sexy enticing package, huh?) This mess lasted for about 5 years.
But GRADUALLY the pain lessoned and I improved...just as you've improved and can now walk with crutches! And it's been only 2 yrs for you!
It gets better, Vasco...it really does!
After 11 years, I met a new man, was married and have a WONDERFUL marriage. You will too! It's been 35 yrs since I was rushed to the hospital and if you met me now, you'd think everything is normal. It isn't. My feet are a mangled mess...but no one knows that! The pain's still there but it's MUCH less intense and I've learned to live with the pain. I'll never be a Bladerunner but I'm doing fine. I feel like I've returned to the same person I was. Really!
It's been only 2 yrs for you Vasco...you've still got many more wonderful years to enjoy...it WILL happen!
Actually i had DIC and TTP as well. TTP” stands for Thrombotic Thrombocytopenic Purpura. Thrombotic Thrombocytopenic purpura is a rare blood condition characterized by the formation of small clots (thrombi) within the circulation, which results in the consumption of platelets and thus a low platelet count (thrombocytopenia)..
These conditions led to my systemic circulation failure. That is part why i had acute kidney damage/injury and ischemic contracture of the limbs. My peripheral extremities could not get enough oxygenated blood and that was why my toes died off and my feet as well. My fingers, palms and lower arms were stiff for months. I had to soak my hands in bowl of warm/hot water three times daily after which the occupational therapists would try flexing the joints and hold them in place with thermostatic splinter. I would carry the splinters over night and would be removed the next day only to repeat same for months until i was able to move my fingers on my own. it was a horrible experience. Even now, i can't make a fist of my right hand.
i was put on heparin medication all through my hospitalization period to avoid deep vein thrombolism. i have other blood disorders as a result of the course of treatment and management of my health condition. I received countless blood transfusion in the hospital. i cant finish telling my stories though.
I have just finished a 6 weeks classes of pain management and still finds it hard to live with the pain i have everyday. I would be going for more surgeries and nerve block surgery in January 2014.
I hope i will live with these conditions for long. 35 years is a long period for me.
Yes Vasco! You're the first person I've "met" who went thru similar situations as I did!
I also had ischemic contracture of my arms & hands. Had to be fed by the nurses as my hands were "frozen" in a riger mortis-like claw. The year was '77 and evidently they didn't know about soaking & splinters as I had neither aids. But I was also put on heparin, with the fun of having the nurses rip the tapes off my arm over & over because they couldn't find a vein.
Did you also have the joy of having a doctor come in to your room to debride your toes...w/o any anesthesia because the doctors didn't want to introduce any add'l medications? I would bite on a washcloth and then shake the rest of the day.
I mention all this Vasco...because I want you to know that I had similar problems to yours...and that if you met me, you'd never know! Yes, it's been 35 yrs BUT my improvement came MUCH earlier! After about 6 yrs, I became a Nat'l Sales Mgr with a large Fortune 100 co. No one there knew...except they knew that I "had trouble" with snow. (Due to my feet, of course...but my bosses didn't know that. I didn't want to give them an excuse to pay me less...as women were just starting to achieve parity.)
It's going to get better for you, Vasco! MUCH better!
You exactly described the situation of the ischemia. Your use of the word 'frozen, rigor mortis' reminded me vividly how my hands were. Yes the nurses were feeding me. I still remember how they would support me with pillows right round or another nurse would be at hand to hold me still while the other would feed me. Because I couldn't sit up on my own due to damage of the vestibulo cochlea nerves. I was falling over like a log of wood. It was a horrible period of my life.
How the nurses administered the heparin to me was direct injection into my tummy as fast as they could.
My debridements took place in theatres under general anaesthetic
Because not ony my toes were involved but the soles of my feet. They kept chopping them off until the plantar bones were exposed. At a time it was deemed as useless attempting saving the lower limbs. I was told to get ready for bilateral below- knees amputation. But I refused but instead agreed for 20 hours extensive feet reconstruction operation with muscles from my thighs and skin grafts. It was a painful operation.
I must admit that you suffered so much in silence. You are one heck of a lady. You must be such a highly disciplined and focused lady to be that determined and achieve so much regardless of your pain. Good on you. I respect you so much and hope to tell same story in future.
I've been thinking about you, Vasco...not your BM conditions,...you. You write beautifully. You're obviously extremely bright! What kind of work were you doing before "our" BM?
may I wish u a happy new year for 2014 and pray things ease for 201your condition mirrors mine except I was not suitable for a ear transplant
I had the same as you
when my wife rang for a para medic at 01-05 28 November 2003 they came and could not find any reason to take me to A &
BUT ANOTHE CREW IN A PROPER AMBULANCE AS I PUT IT NOT A CAR DECIDED TO COVER THEM SELVES AND TOOK ME IN TO THE FAMOUSE STAFFORDF HOSPITAL which I must say from my point of view the best hospital in the world
I will not bore u with the details just to say again they mirror yours
I had both hands operated on on xmass eve 2003 both at the same time
all I can say is I am still here 10 years on I was told I would not walk again bet do do a tiny bit on crutches
Every year since I make a point off decorating my crutches at Christmas with tinsel and battery lights
people tell me how decorative they look for xmass and I say thank you
but
the real reason I do it with help off my great wife is to celebrate still being here to do it
the best of luck to you for the future
if u ever feel u want to chat in pvt here send me a message
some times u may find it good to chat to some one who understands what u went through and where u may be heading
I know I did
again happy new year to yuou and every one else who reads this
I must say that you are so luck that another set of paramedics came to your help. I have nightmares often about my argument with paramedics as I demanded they took me to hospital but they told me point blank that it was needless.
Oh you decorate your clutches that well? Wow! That must look so Christmassy. That's quite creative.
Thanks so much for your good wishes and I hope the new year would be better off. I wish you and family a prosperous new year ahead.
I didn't have bacterial meningitis. Mine was herpes viral meningitis. Even though I had it three times in 11/2 years, I was not as sick as you were, Vasco. I was only sick about six or seven weeks and had a few side effects ever since but you really have been through a terrible ordeal. Just keep plugging away and pray that you will get better.
Wow! Three times? That's so much. You are strong too. Every episode of meningitis is serious enough I think. Thanks for your encouragement . I will keep hanging in there
I read your post and some of the replies and amazed how so many of us have suffered and are still suffering from the fallout of this illness.
I had Meningitious in Jul 2011 I had had a previous case when I was 4 in 1970.
On this occasion it was late evening I was worn out from long hours at work had a few coughs and colds and couldn't budge them, on the night my wife of 18 yrs went to bed early and went an hour later I had a pain in my neck and had taken some paracetomol I started to feel dizzy and sick as I got into bed and then started the tremors for about 10 mins my wife took my temp and called the ambulance.
When they arrived I felt really bad had light aversion and was un charectoristkley angry shouting at my wife to turn the lights off and turn the heating on.
The ambulance crew made a quick call that it was Meningitious and transported me by the time I was in the ambulance I was unconscious. My wife a veterinary Nurse came with the ambulance and stayed with me in resuscitation while they intubated me and put a lines and catheters in she said I wasn't aware of where I was or that I was married or had children and this all affected her very badly she stayed with me till the following day when I regained consciousness.
I struggled when I left hospital three weeks later with two sticks I was tired confused and nothing worked as iot should and all i wanted was to get home and back to work. I was driven to pick up my 5 yr old son who I hadn't seen from the child-minders and got out the car not wanting to see my son with me using sticks I tried to walk and fell flat on my face in the road - I new then it was going to be harder and longer than I thought.
A year later I attended my final clinic appointment and found I had lost feeling in my legs and had prolapsed two discs unconnected this put me back again... back to sticks !
Another year on and im working and my wife comes in and says "things are different now and I don't love you anymore and I'm moving out !!
My wife and my family were my rocks I had devoted 19 yrs and 11 months to loving and supporting them and they were my reason to keep going through all of this! From that day on my wife told me we would never get back together and she was not prepared to try and fix or resolve things. She took our children and she moved 5 miles away she wont answer my messages or calls. I now feel having got back on my feet feel the final kick was being abandoned by my wife and her family. I've written to her and told her how much she means to me and how much I loved her and sent gifts as I always did during our marriage and cards but the only answer I get from her is "you know how I feel and its not going to change!" So yes like others I wonder was it all worth it ? My life now is pretty rubbish have lost my wife and my children will probably loose my home and business as a result of my marriage breakdown! - I still don't blame Gillian as she has clearly struggled I remember asking her 4 weeks after discharge at home what happened that night and her bursting into tears and sobbing while holding on to me and telling me how it had been for her she refused to go to counselling as she is too private a person so didn't feel confident talking to her mum and sister about how she was feeling instead telling everyone it was ok and sending them away! If I could go back in time I would have wanted us to both speak to counsellors and about our feelings and loss from going through this and the changes it brought to our home - I still love my wife even after the cruelties of 5 months apart and not having them around but I can only accept that for us its too late and that she doesn't want to speak about anything and just wants to move away both physically and emotionally
I broke down towards the middle of your post because I knew how it feels to get abandoned by your wife. This sickness has wrecked your life. I am so sorry for your nasty condition. Only such people In your shoes could feel how unfair and unreliable human condition could be. The emotional impact of your family leaving you off when you most needed them is devastating. But you have to start picking your life up bro. We all are. It's all part of the after effects of meningitis. I know you must have thought it useless surviving after all. I have thought about it a thousand times. But I keep going because I have convinced myself that nothing can break me. I wish you all the best
Thanks Vasco it has been a difficult two years and the last five months of going it alone have just added to what had been a bad time. Like many others I wonder at times whether the fight was worth it - but I still get up each day and am thankful for what I have left clearly it wasn't my time and I have some living to do yet? I've started going to the gym and trying to run again having been fit before this... I will be running the Bupa 5k run in Edinburgh in January 2014 for Meningitis Now which is a fair achievement for me at this time. Every time I run I get a buzz from being able to see me heading in the right direction and achieving something. I still have to find a new rock and a new purpose yet and try and forget about the feelings of being let down which do nothing but drag me down into a dark place - hopefully 2014 will be better Thanks
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