3 True Stories | Life After Meningitis | Meningitis Now

3 True Stories | Life After Meningitis | Meningitis Now


So on a bad day it’s mainly due to pain in
my feet and then when I have a lot of pain I generally have to take more pain killers
which I hate doing. They make me feel horrendous and they take the pain away but they take
everything else away with it as well which is not a nice feeling. So on those days you
just have to remember what’s most important and so sometimes I’ll talk to my sister Lucy
and that will make me smile. Things like that make me a lot happier. Hi my name’s Sophie,
I’m 24 years old and I’m currently a nursing student at London Southbank University. I
contracted meningococcal septicemia when I was 21 and from that I lost the ends of my
feet and my finger tips. On the 26th of July I had been quite unwell and I’d been to the
hospital as I just felt awful. They diagnosed me with having a stomach bug and they sent
me home even though my white blood cell count was really high. The next day I woke up about
four o’clock in the morning and I was violently shaking and I couldn’t seem to stop it whatever
I did. I said to my boyfriend that we needed to call an ambulance. I just knew that I had
to get to the hospital at that point. The ambulance came and it took a while but we
ended up going to the hospital and whilst I was in the ambulance that’s when we saw
the rash and it was spreading up my legs. It was deep dark purple and it was unlike
anything I’d ever seen before. I think Matt was quite shocked as well. After that we got
to the hospital and I don’t remember too much but I remember coming into resus and everybody
putting wires all over me, canulas, breathing masks, everything, just to try and get me
stable enough and a couple of hours later I went into cardiac arrest and my heart stopped. I think the hardest moment for me was when I was when I was in the Rena Ward and I had
to learn to walk again. It wasn’t the learning so much it was the pain in my feet. Every time
I put my feet over the side of the bed the pain from the blood going down to feet where
there were no pathways for the blood to go anymore. It was extremely painful, so trying
to put my feet on the floor and trying just to walk a couple of steps was very difficult
but after a while you kind of accept the pain and you just do it because you want to and
you want to get out of that bed and keep living your life. One of Britain’s top doctors,
Dr Parvis Habibi has specialised in treating many cases of meningococcal septicemia in
the intensive care unit at St Mary’s hospital. People think of meningitis because first of
all it’s fairly common and it’s easy to say. Meningococcal septicemia is a bit of a mouthful.
Septicemia kills very quickly and survivors often are left with mutilating injuries – massive
scars, amputations. I realised when I started going to nursery that I was different, all
the way through life. I am not the same as everyone else but I can do just as much as
everyone else. Dealing with different things on a daily basis, going through life learning
how to write, learning how to eat, learning how to pick up things off the floor – it’s
a whole new process for me. I think meningitis is one of those diseases which is little heard about, whereas
you get other ones that are heard about on a day to day basis. I think with meningitis
it’s never going to go away, it’s always going to be one of those that’s going to kick around
and could hit you at any point in life. In 2014 the UK became the first country to introduce
a free vaccine to children under the age of one. Following the recent death of a 2 year
old after she contracted meningitis B, a petition demanding that the Men B vaccine be made available
to all children has sparked debate. Now we do understand the cost effective process and
we do understand that with a new vaccine we won’t be able to measure the impact for another
2 years but we believe that by extending it to the under 5’s the cost won’t be huge and it will save hundreds of lives. The night I put Ellie to bed and
she was absolutely fine and all of a sudden she started making a really low groan. As
soon as we touched her her temperature was exceptionally high. We went down to the hospital for about four or five hours and got sent home. They just told
us it was a urine infection. We were back home probably about six hours and she was
very, very close to death by the time we got back down to the hospital. We barged through
the triage where they assess people and we just barged straight through there. We were
starting to get told off, pulled her top up and showed her back which had now started
to spread quite quickly. Went through to the children’s A&E and then everything just went
absolutely mad. You got to a point where you could clearly see what parts of her body were
dying off and you knew it was coming. That was something we learnt as we went along,
it was part of the meningitis I didn’t know could happen. It was only very soon after
being there you realised it was going to happen and for every day you was hoping ‘Right hopefully
this survives, hopefully that’ and particularly her hands were not doing too bad and then
we went away, we had to come away from the hospital. We were given a room just down the
road and we came in one morning and the hands had just deteriorated over night. We knew
then that was a really bad day because we thought that was such a massive thing to try
and keep. So that was probably one of the worst days in there I think. There’s nothing
to describe it, it’s hell on earth really, just you’re going to lose one of your children
– see look, even now – it’s about the worst thing that can happen in your life I think. It’s extremely unlikely that it’s going to happen to you but obviously we’re one of the
families it did happen to. You can’t say it’s not worth it, for every one child that has
to go through this, whatever the cost to us, it’s worth every penny. Whatever the cost
would be to not have another family go through what we’ve had to go through.

Comments

(34 Comments)

  • mark harpin

    https://m.facebook.com/story.php?story_fbid=10209622191256772&id=1388361336

    Please donate.we are doing the tough mudder to raise money for Meningitus

  • MsJenn1985

    My daughter was lucky to have been in the second faze trial for the men B vaccine after a girl 4yrs older at her sch became a quad amputee, to see a child go thru that is horrific and I would have paid for the vaccine in a heartbeat X

  • Kenley Robinson

    I had meningitis as a baby. Combined with a CHD

  • Evie Roberts

    My daughter survived bacterial meningitis, Septicaemia and peritonitis. Kids that survive learn how to thrive, but it's us the parents who are left completely traumatised by the whole horrifying experience. I had to see a therapist so deep was my trauma. Then there's the grieving process…grieving for the person she was before the illness to who she became after the illness. It's a huge trauma for parents.

  • Viviane Venancio

    In Brazil all children receive free vaccine. I can't understand why developed countries can't offer it also.

  • Rafa Haque

    I had meningitis meningococcus when I was in yr 6 and survived

  • James Hyden

    I have not had meningitis but I do say thank you to everyone who signed the petition and today I got a Men vaccine

  • YUNO GASAI

    I was 5 days old when I got this… today in 13. Idk how but I survived without any defect

  • Emily Sally

    I survived meningitis and I'm happy to still be alive

  • Brittany Harrison

    I had meningitis when I was 2 (1992), my mom took me to the hospital and the doc sent me home. She took me back the next day because I couldn't walk and had this blank stare. The doc on call did a spinal tap and that's when she realized that I had meningitis. I've been doing some research on meningitis and from what I found almost every doc has misdiagnosed the child and the parents have to take them back before they catch it. But by then the damage is already done. This is a question for anyone who had meningitis or associated with a person. For a few months I have been in extreme pain (muscle, joint, nerve pain) most in my back along my spine, feet, and left shoulder. With all the tests the doctors have ran they still don't know what it is.. but all I know is my health has been deteriorating for the last 7 years. Has anyone else experienced this or any pain after getting over this disease?

  • Mariah Ancona

    my name is Mariah and I contacted leptospirosis and spinal meningitus in 2007 while swimming in the hot ponds in Pune big island Hawaii I believe it also caused my auto immune disorders it's a life long problem even if we survive it

  • Jim Jones

    Scumbag socialworkers said parents caused her illness by eating a discarded sweet from the floor to be complete rubbish and heart-wrenshing my child survived aged 2 she now has bionic left arm and both prostetic legs how dare they

  • Martinez217

    I had meningitis a few months ago they cut open my head and drained the fluids after that my head was swollen and big it went away after a few months but I couldn’t walk or move my right side they put a purple cord going to my heart and a tube up my nose which was my feeding tube it hurt went they pulled it out I had seizures and now have to take this medicine I had a very rare meningitis strep type a it was called, I almost died but I was in a lot of pain please like

  • sassy gallxoxo

    its going round m,y school 5 children hve it and 3 teachers

  • Hannah Morrissey

    I am 10 now and I suffered meningitis ❤️ when I was 3 months now I M fine ❤️❤️

  • humannamedhannah

    Google meningitis and it literally says “rare” what does he mean “fairly common”

  • goprobros dlfpolar

    I had menigitist when I was five and I serviced now I an 10 I have to go to santloois in may18 hoffly I'm ok if been having bad head asks my problem is my legs start hurting

  • E is for Ello there mate

    I know Ellie from para junior nationals in April. She’s an amazing swimmer.

  • The Slatonator

    That’s awful that the doctors let a college student with her symptoms and an elevated white blood cell count leave the hospital, presumably without a tap. Docs ARE NOT geniuses! Not by a long shot. DEMAND care that is DECENT.

  • UrbanCascade 115

    I had meningitis back when I was 7

  • Kent Nation

    I survived meningitis with no permanent effects… i dont think

  • MOHAMAD QIZE XIO SOWRDRATH Alabaddi

    I had menigitis and it's was ho_ro_bile I mean I almost died but my Bones and skin are way more portected one time I fell from the stairs and almost brocked my back my leg I'm luck for being fat after meningitis lol XD😂

  • ClydeTheCapybara RBLX

    here in ontario we have to get meningitis vaccines when we’re in grade 7 or else we are suspended from school ee

  • rhandi dOrK

    I had it when i was 20. Now im 34, im still suffering its effects. Both my legs still hurt when i walk. Im using a walking stick for my balance. Happy to be alive.

  • Achwaq Khalid

    I got it at 23 and survived with no permanent physical effects! Cognitive ones I don't know…. 💭 🤔

  • Graham Costello

    Great to see all the individuals in the video making the best of their lives, I survived sceptic meningitis and encephalitis in 2015 with all limbs still attached, I was diagnosed with a mild abi but feel lucky to be as well as I am. Keep up the good work Meningitis Now

  • Svenja Cst

    My parents vax me or meningitis when i was 4 but when I was 7 i cought meningitis septicaemia (Dont know how its called in english because Im from Germany)… Im barely alive but I lost my right arm Elbow, my left fingers , my left leg from knee down and my right foot. Now Im 13 And I have no problems, I play Football, do swimming and jump on my trampoline. My friends accept me how Im and they help we when I need help. But I lost my father last year because of meningitis septicaemia. But he also had really badly problems with his heart, so it was easy for the illness to do so. This happens when I was 10. And now if I remember old times, i think that all happened for a reason, and if it is so, then its good.

  • 92hotcheeto

    I got the vaccine for meningitis then a year later I had bacterial meningitis. It damaged my hearing nerve I lost my hearing am deaf but luckily I was able to get a cochlear implant I hardly get sick still have the same strong immune system I had before.

  • taj mulhall

    I had SBM last August at the age of 60. I spent 5 day unconscious and another two months gaining enough strength to walk,, my shoulders have been affected .. left one froze.. , exactly one year ago…. I have gotten almost back to normal , but I have bouts of what I call… relapses
    Just being very stiff

  • taj mulhall

    my heart goes out the victims here ,.. Im very grateful , and never take one minute for granted ever again ..

  • Michael & Daniel 2 kids in the Philippines.

    My 2 boys got meningitis within a week of each other a couple of months ago, no free medical in the Philippines, see what happened and their development since, I subscribed to your channel, people need hope, we found it.
    Michael and Daniel 2scouse kids in the Philippines..
    Our story, first video hospital and recovery on a ricefield.

  • David Markham

    I survived Bacterial meningitis at the age of 39. It all started started with an ear infection that traveled to my brain. The neurologist asked me if I ever put my fingers in my ears and I told her yes. She thinks I may have scratched the inside of my ear with my fingernail causing the infection that would travel to my brain. I was in a medically induced coma 10 days, in cranial ICU 30 days, 2 more months of rehab. had so many machines and ivs hooked up to me it filled a room almost, was on life support, had a bear hugger machine hooked up to me to drop my temperature, feeding tubes, trach, 3 brain surgeries? with the last one a permanent vp shunt being placed, 2 months of rehab hospitals, with 6 months of outpatient rehab. I still have short term memory loss, a hernia where they placed the feeding tube, and a lesion of a sciatic nerve which has caused me to not be able to feel my right foot or toes except nerve pain. However. I feel very blessed and I am so very thankful to be here and be a survivor of this horrible disease. Not everyone is so lucky!

  • Michael & Daniel 2 kids in the Philippines.

    My 2 boys both caught meningitis within a week of each other, thank god they survived. There is no free health care in the Philippines, thank god we had some savings and they recovered with excellent treatment but that's not the usual outcome here. There is always hope.

  • Pierce Schwenk

    I've survived from spinal meningitis at the age of 3 years old I died and came back it's hard to talk about it doctors thought I wouldn't be able to walk I had to learn everything all over again .. I can walk thanks to my sister for not giving up … I suffer from a twisted spinal cord I dont have health insurance so I cant find out more about it … I'm 28 now I've been dealing with major back pain for the last 25 year's

  • Your email address will not be published. Required fields are marked *