Hi, I was diagnosed with VM in February 2016 and I feel like I'm recovering in myself but my body doesn't want to if that makes sense? In the mornings I take at least 1hour to wake up, I have to set like 5 alarms to gradually wake myself up, I've constantly got a headache with photophobia where I can't look at light, I understand it takes time to recover but I'm 19 and my job wants me back full time but I phisically can't do as much as I used to. If I do to much I go all dizzy my eyes shut on there own and I can't move, my feet feel like I'm stuck to the ground, surely that's not right? Also I keep coming up in these red rashes, I've never had an allergic reaction or anything, it took me 5 times to go to A&E before they diagnosed.. they kept saying to me or you putting it on for attention? After that I thought no one wanted to help, until I paid for private treatment which cost me a lot. Sorry to tell you my whole story but maybe someone has the same problems where they keep coming out in a rash.. I hope you can help.
Many thanks
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Samuel96
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I had sinusitis as well, I had 2 spinal taps which wasn't nice, but they said I might be on medication for the rest of my life which isn't nice either, If I go back to the doctors all they say is we can't do anything you've seen people higher then us you just have to wait, and the rash I haven't been back to the doctors because I feel like I'm wasting there time because be-little me so much, the comes and goes it's looks like little love bites I get it for 2 days then it starts going then it comes back, I get it all over my shoulders and chest, I don't want to go back to the doctors that's why I've come in here to see if anyone could help?
I am 15 months post meningitis and still feel like this, please listen to your body and give it time to heal, I know it's hard but that's where I went wrong and I'm still paying for it now! As for the rash I am exactly the same but hadn't even considered it may be connected I just put it down to shower gel, washing powder allergies etc, so that's interesting'! Did you get any answers on the rash then?
Hello Samuel196, I was so sorry to read your story here and have to agree with Emmadale's reply; you need a lot more time to get over this illness.
Work, I'm afraid, will have to wait. This virus you've had, made an all-out attack on the lining that surrounds your brain, never mind your immune system; your body needs time to recover. Can you get your GP to sign you off for at least a month?
Rest, rest and more rest. No stress, healthy eating and pacing yourself by listening to your own body will do you more good than anything else.
I still have light and sound sensitivity; I have to rest up before and after any social occasion and I'm on medication for severe migraines (as a result of having VM) and that was 5 years ago.
It gets easier Samuel but it takes takes time, VM is not like a bad dose of winter flu', it's much more serious and unfortunately, people don't always seem to understand this fact.
Have you contacted Meningitis Now? They will be able to offer you a lot of practical help and support. Good Luck, take care and you will get through this time 😊
You're only 19. When I was 19, I also had a tough time waking up in the morning. Someone suggested that I place the alarm clock across the room...as the ONLY alarm. Yes, I ran into a few walls...but it worked.
Each decade you'll discover that it's easier to awaken in the morning. By the time you're older, you'll awaken from the slight click of the alarm clock, just before the actual alarm rings.
After my BMeningitis 40 years ago, I also had daily headaches...still do. But I've learned how to control them. 5 minutes after the headache begins, I take an Excedrin Extra Strength. (That's over-the-counter in the U.S.)
As someone who was also working when I contracted BM, I quickly realized that I was amazingly lucky that my employer took me back. And remember, no employer (or co-worker) wants to hear about your illness or after effects...the employer simply wants you to do your job...and do it well. My advice is to not go back until you are able to do your job WELL.
You can DO it! Just tell yourself to concentrate on your job and talk about your VM ONLY to your family, your doctor, and to us...because we DO care!
Hi I'm 15 months on and had 3 relapses as I obviously didn't listen to my body or rest when I needed to! I have no rash! But I do suffer with my eyes shutting on there own and it's really difficult to open them however I collapse shortly after from full body weekness and I can't move for around 2 hours - is that something your experiencing when u say you can't move? Please rest!! I have a very stressful job and a family but it has to wait I physically cannot go in! It will be there when your better ! Take care of yourself and your not on your own!!
Yeah it's so weird like I literally can't move!! My body just goes like jelly and I collapse, I can't sleep because I've got a constant headache so I'm awake all night, I wouldn't say my job is stressful it's more physical, I work with kids at height it had its easy days and hard days.
Wow - I've never found anyone else that collapses like we do - legs jelly and then can't move!! Unfortunately I've seen 2 neurologists and no one can give me answers!! I'm on pregabalim for it and troparimite. Menigitis now have said its like we are having echos of the original illness but it isn't VM again just the after effects! But I did stumble across some information on chronic fatigue syndrome / ME which you can get after a viral infection so it maybe summit to look at! Please look after yourself! oh and ps I had sinusitis as well ? Not sure if that's a coincidence or a link?
I could be doing anything then all of a sudden I go like jelly my eyes slowly close then it's just dark, I was reading about that as well but I don't know of its worth mentioning to the neurologist but I don't want them to say it's that and it might not be if that makes sense? They didn't know if sinusitis caused it or not so I'm not really sure?
I totally understand why u wouldn't ask about csf yet - it's too early in your case anyway! It's defo summit to think about in future tho if they hit a block ( like with me - they just look at me and have no idea what to say or do!) I don't know what caused my VM but I have had sinusitis since my latest relapse so hearing u had this too may be some kind of link with the collapsing part?!?! I do hope you start to feel better soon - please keep In touch with what they come back with as I said you are the closest person I've found with the same symptoms to me and I'd really like to know anything they tell you that may have me?!?! Keep in touch and rest up!!
It will take you a long time to recover. This illness is not easy, see a neurologist. Your brain needs to heal, you don't have a choice but rest. Don't over-stimulate your brain, I know this after 1yr into recovery. Don't beat yourself up, you have had a tremendous illness and you need to take time. You'll get through this as we all will.
You should write a letter to the health service that you got misdiagnosed with as it helps to get things off your chest!
I had bm in october and was in hospital for nearly the whole month, i had a lot of issues and critical at times and since hospital ive had a lot of side effects that im still dealing with.
So all that sounds pretty normal to me;... Its took me 6 months to get back to work and started on two hours a day, slowly and gradually do stuff and dont run before you can walk as we all try to after going through this just to feel normal or our old self but we cant. Do what you can and unfortunatly you cant do what you used to or fully any time soon. Get in touch with health services/liasons through your work or in touch with meningitisnow as they may help or give your work in depth knowledge of meningitis
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