menigitis

My Story - Menigicocal Septicemia

It started a day or two before when I wasn't feeling well and my mum rung the doctors and they said it was just a chest infection then a couple days later got ill with meningococcal septicaemia type b and both my kidneys failed and I had no immune system, I passed out on my mums bedroom floor in February 2004 which means I was 5 and I was found by my brother who was 6 at the time and came up in a rash all over my body and I died over 3-4 times and I was in a coma for several weeks and then I woke up, I didn’t have any memories such as school friends and so on, I remembered my family but that’s it, I had a thing with my head where I thought I was younger than I was (in my head I was just reborn so I thought I was a baby) I wanted dummies and being fed, by this point I was underweight, and when I was in my coma, my mum got told I wouldn’t live, I’d have brain damage, they’d need to amputate an arm and a leg, that I would never walk again, my mum refused to have my limbs removed, so the head doctor said no and to let nature take its course and what comes off comes off, and so we did, many weeks later I had finally been able to drink and eat fully, I gained my apitite back and started building strength to speak move about and smile, I was still in imence pain as I had to be wrapped up in banadages all over as my skin started to go black and hard (caused by the septicaemia; which is blood poisoning) I had a whole in the back of my leg and you could even see my bone, when I was taken out of the ICU I had started to get more visitors such as cousins, family friends and so on, I also had a very low platelet count as my body has started to use all of them in my healing process, and I had to have blood transplants a lot which terrified me, I got better and better, I started eating sweets, and I had also had bald spots in my hair and they started to go back, I had some of my tubes removed for feeding and started to do it myself, I eventually got moved from a hospital in London to my home town hospital, and then I was eventually aloud home after weeks of recovery. When I was in hospital my whole family came together and redone my whole house and made it a lot better and put laminate flooring down so it wouldn’t gather germs like a carpet would and made my house a lot more maintainable and sanitary. I had to have nurses in and out atleast once a week for a check up but it was worth it! To be home with my family was amazing, I had my wheelchair service measure me for a wheelchair and then I was ready to go, I had physiotherapy and I was give excercises to do, and one day I was doing them with my sister and I was told to do one excercise where I lean on my hands and all of a sudden I stand up on my own two feet and start walking. It was a miracle. Then my sister shouted my mum and my mum and brother came running, my mum cried with so much joy and called my whole family round to witness my acheivements, and by this point nature had started to take its course and I had lost a majority of my toes and the actual soles of my feet, this had made things harder as my doctor said that you can’t walk without your big toes, I had also lost half of two fingers and the tips of two fingers and so I walked for the first time, and things got so much better, I started back at school and had loads more friends and my whole town were supporting me through all of this as well as my family and friends, I gradually managed to gain my ability to walk and move about more, and do things I got told would be impossible. Then I had to go see my surgeon who had told me my bones have retracted in my feet so they are an arch. So maybe a month or two later I was due an operation to have pins in my feet; through the bones and skin graphs to try and make my feel as easy as possible to walk with such as putting extra support where I needed it like where my toes had been and so on, and I had my pins in my feet for a while and then I had them taken out and again I started walking again, this time wasn’t as sudden as I had crutches but it still made a big difference, after this I was given physiotherapy and hydrotherapy, this was to help build up muscle and confidence, after this I had been in and out of hospital for check ups a lot, I had a operation due but I wasn’t ready for it just yet as I was told I will need these operations every 6 months of my life until I stop growing and even then that might not be the end of it, so many years later I had gained around 75% of my independence back and I had moved away from my home town and started a new school, with new people and who knew my name, not my story, this had made a big difference to my life as people could never really understand what was wrong with me, they just knew I used a wheelchair and crutches some times, and so I was bullied as I was and still am over weight, my walking can be amazing today but I can’t walk tomorrow, no one knows how it could be.. So I had random days with crutches and sometimes my wheelchair, and the first time it snowed I wasn’t aloud out as I have scarring everywhere on my body and if they were exposed to cold for too long they get dry and start to split and bleed which is painful! So snow is a big no no! And with weather change also comes scar change which means they can be tight and stuff or normal so its different, things change a lot with my body. When I was in year 5 I started to get a swollen lump on the side of my leg and I started to find it harder and harder to bend my leg, and so I went to see a doctor with my mum and I was told it was a lipoma (A lipoma is a growth of cells in a thin, fibrous capsule usually found just below the skin. Lipomas are found most often on the torso, neck, upper thighs, but they can occur almost anywhere in the body. ) And so I was given ibuprofen for the swelling and pain, I used crutches for a while and the swelling went down a little, then about 3 years later we had seen over 3 doctors within those 3 years and we was told it was scar tissue that is knotted or a lipoma then I got referred to a new physiotherapist (I had recently tore ligaments and tendons and damaged my leg in an incident on a trampoline where I’d fallen awkwardly and had to go to a&e and I also found out I have a bone condition where my bones don’t absorb the calcium they need) and so I was fragile from that and I told her I had doubts about this lump being a lipoma as we was told it should be gone within 6 months, and it hadn’t, I told her I was worried it was bone, and she said that because of the way I walk with my feet without certain support in certain places my bone had slowly split and moved itself to the side which meant my leg had healed in the incorrect way, and I was struggling still, and she said she wants xrays done too see what we can do to fix it or to operate on it, she said she would send out a letter with a briefing to my mum about our meeting and when our next meeting would be, and I was given exercises to do to help build muscle after my injury and to help my legs, and she has messed the paper work up and we’d been signed off because we didn’t show up..? Anyway I had a letter through from my hospital asking whether I would like to go for an appointment about having custom shoe’s made for me, and by this point I didn’t want to be singled out anymore so I said no, but my physiotherapist suggested about getting all different things to help with my legs and muscle and support and so I said yes, then things messed up so we are waiting for a referral still.. But now I am living with family and doing so much more walking and doing so much more, walking around like I’m normal again, and there isn’t a day that goes by that I don’t think about my past with all of this and I hope one day I can help people who have similar problems as myself and I want to become a paediatrician to give back what I had help with, and one day I can say I made a difference just like everyone else in my life had.

I did get bullied through all of this by low life’s but all I can do is think positive because it will get better in time, and its easy to sit behind my laptop and say that; but I’ve been there and I know its hard to believe things could get better, but I promise you that they will one day!

If there is anything you want to ask me then tweet me or ask me on tumblr and I will answer.

Twitter-@eliemaher