Hi everyone, I have been doing pretty well although not working. I have volunteered to the local hospice and was looking forward to starting that. However last week, after a long day travelling to see my sister and all the chit-chat there, then another whole afternoon at a speeding (driving) awareness lecture where I really had to concentrate for 4 hours, I felt so rubbish on the days following. Now a week later I'm beginning to feel anywhere near normal. I slept for most of 2 days and felt all the old nasties of anxiety, confusion and irritability come flooding back.. yuk. I suppose I should be glad that I can still drive to be going to a speeding awareness session for my naughty offence eh? I was reminded of something I read a long while ago and thought I would share it with anyone out there who is suffering the same sort of set-backs. Its an extract from "a letter from your brain"
I quote; "what I need you to do is this: because neither of us knows how badly I've been hurt (and things are still a little foggy for me), or how much I will need to recover, or how quickly, please go s - l - o - w - l - y when you start back trying to resume your life. If I give you a headache or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented or afraid, or make you feel that you are overdoing it, I'm tring to get your attention in the only way I can. Stop and listen to me". Just a little reminder for all of us who are so anxious to get on with life and sometimes feel "held up" by the constraints of this awful disease.
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Canada3
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I know exactly what you are speaking about. It's like one step forward and two back, frequently, and that is so frustrating. Do you ever feel like it is post trauma? I fell that way especially when I get to doubting myself. I just have to push forward and keep trying, no matter what. I do rest when I'm tired. You are right to feel lucky that you can still drive. I also have that grace and it is lucky for me that I do as my husband has post head injury seizures and lost his licence. Our world would shrink considerably without having that ability. I am in Canada as well and was not told of any of the after affects of meningitis. When I do bring up my symptoms to the Drs I am told that they may not be related to the meningitis at all. I am thankful to Meningitis Trust and to all the people who take the time to share their experiences as it helps to confirm the common after effects of meningitis so we know that we are not imagining things, nor are we alone. Kind Regards, Jeffery
hi .. just over a year on and i still can't concentrate .. got lots of books i am desperate to read but can't concentrate.... watching the tv its easier for me to not look but listen i take more in then...a conversation is difficult if in depth i tend to blank out its weird ... lets hope there is a light at end of tunnel for us all xx
anxiety can play a big part in any one life, no matter what illness they have had, its like a little child playing tricks with our minds.
research shows Low vitamin B-12 can cause fatigue, weakness, memory loss, and other problems with the nervous system. vitamins are crucial for nerve transmission and are needed in higher amounts as your stress level increases
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THanks Canada for that wee poem- definitely one we need to remember.I can relate to everything you are saying re concentration.Meningitis is a form of brain injury and though doctors dont often treat it as that,we are sadly left with many deficits and without the specialist help.I have great problems with memory,concentration which affects my ability to grasp new tasks and wipes out my ability to remember short term.Like you I also start to feel panicky and anxious and confused.I once wenyt into a disabled toilet in a cafe and forgot how to get back and ended up in kitchens! I just burst into tears as genuinely couldnt think how to get back out.
Sadly I am no longer allowed to drive and this for me has been the biggest inconvenience,living as we do in a rural area with little transport.I also travel poorly due to vertigo.
I have also recently started volunteering at a local charity and have to go to 3-4 hr training sessions.The first time,between the car ride there and just sitting trying to concentrate,interact and remember folks names was so hard going that I came out feeling I couldnt cope with it I felt totally spaced out and had to lie down in bed for the rest of the day.I thinki it is a lot to do with sensory overload?The brain is having to cope with so many incoming information and this causes anxiety ,mood swings and general feeling s of illness.I notice I feel spaced out,get a migraine,feel even more dizzy and nauseaous,struggle toget worsd out and to speak.These are my warnings that I have overdone iit!-I am 5 years post Meningitis! When you realise how much the symptomsare still affceting you( I also have long term ME) itcan be very disheartening.
Having had Me for 12 yrs and dealing with living on very limited energy has been experience for me!Sometimes Im not sure which illness is causing which symptom.But it has taught me to listen to my body -symptomsare indeed the body telling you something is wrong eg you have overtaxed your body/mind and you need to rest.With Me there is still great misunderstanding and people are still told to push through the fatigue,but you cant.When your body is exhausted ,for whatever reason you must rest.It is so very frustrating and limiting ! Some of the pacing techniques suggested for ME are applicable to any illness with fatigue,cognitive problems.I must say I dont succeed very well with pacing - either I am too ill to do things and need carers or if Im feeling less fatigued I want to do everthing!I think the general lesson of being kind to yourself,listening to what body is telling you and breaking down activities into smaller steps,interspersed with rests is sensible.
Re sensory overload -I cant do 2 things at once -eg if I am in a restuarant with music playing I find it difficult to hear and talk with others. find one to one converstaion much easier,but even then it is tiring.If travelling I use earplugs as noise plus visual and movement stimulation makes me feel really nauseous/Car sick.I had hearing tested twice after Meningitis and it is apparently fine,but I think it is more to do with my brain not coping with overload?Has anyone else noticed this?
thank you for all your empathy and responses, I will certainly look out the B12 too. Jeffery, I think you are right about the post trauma. I worked as a physio for years and many patients suffered long term effects of anxiety post trauma, though often the physiotherapist was the first person they had admitted that too. Maybe we just have that pathway in our brain to the nasty bit and we continuinally repeat the experience. I am trying to listen to my body more and you are all so right, we push and try to beat it, when really we cant. I dont live in Canada though I am a Canadian citizen which I am very proud of after living there for a few years and becoming naturalised. I am returning for 7 weeks this summer, and so looking forward to it... though I havent done a long haul, so trying not to get too worried about that.. at least I have time when I arrive to sleep for a few days without meeting anyone etc. We are so supportive of each other, and I so appreciate that, thanks everyone from my heart.
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