Hi
I was born with a defect as csf leak.
This caused me to suffer re-occuring bouts of bacterial meningitis and 3 coma's s it was left untreated until I was 20.
My first coma was aged 5 in 1993 when there was very little info, since then knowledge is progressing but some of the things I have found helped isn't due to this progression but my own trial and error during my experiences.
- I did not understand what was going on as at times I was to young and other times my concentration was to poor to understand- I found the solution in the meningitis book they have I believe it is currently known as a book to explain it to children but I believe it helps any age as it explains it simple. Its not always just at the time you need it explained but sometimes after aswell so you realise what has gone on and I believe this is the best way.
- anger- I believe its commen after meningitis to feel angry I found talking about your experience is very important with helping this issue, it is ok to be angry to a point but if it starts to affect those around you or affects your life then I believe it requires input, meningitis trust provide counselling, which I found really helpfulf.( I will be honest and say at 1st I wasn't keen I felf I had, already had enough health proffesionals in my life and that I didn't need to talk about it, but mom insisited I tried it, and now I believe talking it through with people who can listen who are not emotionally involved in you personally but understand what you have been through really helps)
Realising you are not alone in your experience talking to others who have been through the same I find also helps.
Finding relaxation- this may be massage, reflexolagy, rhyke, tia chi, manacure, armoatherapy baths, walks in a peaceful place, relaxation tapes, I find this really helps reduce your anger by doing this regular for me it was twice a week.
-memory- set yourself your own little tasks it maybe that this is temporary issue maybe this is permanant but no harm in trying this out for , I used to get so frustrated. That I couldn't remember things that was needed for everyday life so sticky notes was the answer for me, things that was easy to put around the place and was really useful, also continuous routine, someone reminding you of things continuous, set yourself up a list of things you need to do regular
Also memory cards are good, as they can really help aswell as something like going over a personal photo album of people the person knows
-nighmares- do not watch things that play on your mind such as the news before you go to bed, scary programmes or programmes which make you think to much before you go to bed. Also councelling can help this
Now physical
Headaches- I suffered severe headaches after each bout each time I was given cocktails of medicine to try all of which I felt either didn't help my headache, helped short term or side effects made me feel worse than the headache itself then I discovered my life saver forehead, its not a tablet, it doesn't have the side effects tablets do, it doesn't make you drowzy but it helped my headaches within minutes of using it, the stick was the only thing I used in this range as that what the range had when I first started it but I do know they have bought out the pads you place on the forehead aswell now, when you get a headache you apply it and it starts working very quick it doesn't cause any bad side effects as far as I know and it doesn't make you sleepy or drowzy.
Aches and pains in joints or muscles- I also suffered with this bad and other than lying in hot bath for hours I didn't know how to stop it, then I started experimenting I didn't feel confident in having a hot water bottle at the time as I had a worry I wouldn't remember to hold it up right and then the boiled water may leak I know it was silly but I couldn't help it also you couldn't fall asleep with one, but during the day this can help, then on the night or if you was like me and worried with your memory you would forget to hold it upright there is now the option of the heat bags, hot blanket on the bed helps, as well as the heat pads you can buy I found by keeping my joints warmer than usual my pain as reduced, I also had accupuncture for my hip which seems to really help and reflexolagy- which also really helped.
Mobility issues due to lack of use, fear or pain- when I was younger and my advise for people with young children under 13ish is do it through play and not pressure, play is a great way of helping this improve it distracts you from pain and makes it fun and not seem like something you need to do but something you want to do.
For older people I find setting small goals really helped I was 17 when I had my 1st adult bout and had a year unable to walk, at first it was very hard as I got tired with just moving, but I set goals and each time I reached a gola I made the next one a little bit harder, don't make it to much harder as it is also a confidence building task and so it is improtant not to set impossible tasks
Remember this is my advise, I am not medically trained and so can not tell you if these would defo work for everyone, but I am a person who has had experience as both child and adult on a number of occasions (both as adult and child) and these really helped me and I believe if you can do the above then it is worth a try.
If there is anyone who has after effects which aren't named above and need advise please comment, if you have other ways of overcoming after effects please comment, if you have tried any of the above please comment. Whether you agree with me or not, if you just want to comment please do, I think its just as important for us to share useful tips and opinions as it is for onions as much as all other aspects are important.
most of all, when i have a brain dead day, i tell my mates, lost the plot day and they undestand :))
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