I was diagnosed with VM in Feb 2018. Having had 4 months off work I tried to go back to work today. I thought I would try as i have been slowly improving at home. However I really struggle with talking, thinking and computer work. After 1 hour I am so exhausted I can barely speak and my words get muddled. I wandered if anyone else has experienced this and how long it took to subside?
I would really appreciate any replies. I really felt positive about getting back to work. However I have been so overwhelmed by how my body can't cope with it I've just burst into tears most of the day 😢😢😢
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Seacalm
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Hi, please try not to worry too much, it does get better. I felt exactly the same as you on my first day back and only managed an hour and a half before I had to go home. Luckily my employer was understanding and I hope that yours is too. I gradually built up from the first day until I was back to full time hours. You've been really ill and need to take things gradually and not rush things. Try to be proud of yourself for doing an hour today, it's a really good start. I understand exactly how you feel, but it will get better and you will get there x
Thank you so much for your reply it really means alot. My employer was understanding thankfully I was there from 8.30 to 3.30 but could hear on the phone how fatigued I was. She has agreed to adjust my work routine for the next few weeks to build up gradually. I was just upset as i really thought afterc4 months I would manage. Thank you for taking the time to reply and hoping that you are well.
I'm so pleased that your employer was understanding and has agreed to adjust your work hours, as that does help a lot. I went back on a phased return as there's no way that I could have gone straight back to full time hours. I am doing well thank you - I do still get very tired sometimes and when that happens, my concentration is non existent, my memory is terrible and I muddle my words occasionally, but those times are getting much less and I am getting stronger all the time. I consider myself one of the lucky ones as some people come out of this a lot worse than I did and never get back to work. You are doing really well from the sounds of it so please don't be too hard on yourself for today x
I am still close to the beginning of my journey (June 5), but I think you should be kind to yourself as far as expectations go. Even just going in to work is a big deal. Hopefully it will get easier by the day. xo
Thank you so much for taking the time to reply. Hoping your recovery is going well. This website is so hopeful to meet others who have experienced the same ilness.
How was today? I have realized that I can't bend over. It is instant headache and nausea. I wake up every morning feeling like I had no sleep at all and my brain is scrambled. Typing is very difficult.
Reading the posts makes me realize how futile going to my doctor would be.
My daughter was 13 when she got VM she is now 15 and still has days where she cannot put a sentence together properly she knows what she wants to say and so as you can imagine gets a bit frustrated. Her headaches are easing off time ways as in she doesn’t have them as frequently but when they do come they have the same intensity as they have always had. I hope you feel better soon we were told everybody is different and recovery is different for everyone two years is a very long time for anyone but becoming a teenager and getting so poorly so fast with awful after effects has been so hard for her.I would say don’t force yourself to do things because you think it’s time or you should let your body tell you and I do think sleep or just taking time out helps.
Thank you so much for taking the time to reply. I am so sorry to hear your daughter was so poorly and that her recovery has been a long one. Such a very scary thing to go through at a young age. You must be so proud of how she is had coped. I hope that her good days out weigh her bad days now. I am 41 and have 2 young children and feel blessed that they haven't had it. I feel well enough to function as a mum again which was my main focus, I am sure working again will happen just slower than I thought! ! Hoping that as a mummy you are looking after yourself to. Wishing you both happiness and good health.
I am 12 months after VM and I am experiencing the exact same symptoms. Its a lot better than 6 months ago but still. I am a freelancer who works from home. Try to imagine looking 12 hours on the computer after VM I am usually tired after 4 hours. Try to buy this special filter and put it on your screen it really helps to filter the bad light from your PC. What really helped me so far is to avoid TV, looking at your phone or any screen. The less the better. Also, I work now like this: 2 hours of work, then I take 20 minutes break. I lay down with music therapy /nature sounds, calming sounds/. Just close your eyes, listen and relax. It really helps. Definitely, do not stare at your computer for the whole day.
Avoid crowdy and loud places. Basically, any place where your brain has to process a lot of information. I am much better now after a year but still not 100%. I would say 85% now.
Thank you so much for your reply and sharing your story. Really good to hear that others have felt the same and really good to hear you are doing so well.
Really interesting to hear how you've changed your work routine to cope post VM. I'm in my 4th month & still off wondering what return to work will be like. Thanks for your insight.
I am 16 years post near fatal VM and I went back to work after a tad under 6 months. Like you I really struggled but it does slowly get better but you can expect to have good days and bad days I'm afraid. On the good days try not to go too nuts work wise as a bad day is guaranteed to follow. Your brain has suffered a trauma so it is likely that it will take a while to recover, if you had broken your leg then you wouldn't be surprised if you couldn't run a marathon after 4 months off, on day 1 of your training plan and the same principle applies. It's good that your employer is understanding, mine wasn't and I was forced to go back to work as they drastically cut my salary and then they wouldn't make allowances for the fact that, 6 months on, I was still quite seriously ill. Fortunately now I run my own business so at least that has improved!
Take it easy, please rest and slowly but surely you will get better. Thank, Jonathan
I had the same thing. My work is very demanding so I had to have 18 months off. It took a while for it to settle down . It took 2 years for me to reach a point where I started recovery and things slowly improved.
I had to build up conversation time and time at the computer slowly, a few minutes at a time and then rest. Now I can do it all without any problem.
Now I have made a full recovery , although I still get tired at times, but see my previous posts and the latest one about climbing Ben Nevis as it may help to keep you positive. I had to be very patient as I had a lot of after effects and was very ill. Now , however I think it was the most liberating thing that has happened. I view life very differently and I enjoy the little things. Good luck x
Hi Bonkitty...I am at 8 months & still in bed alot. At what point were you able to start doing anything?? Going outside, maybe doing a hobby, very small things? Walking to the kitchen to get food too many times sets me back, it hasn't let up yet at all. Before VM I never stopped ... then all of a sudden you are forced to & no one around you understands or believes you. Not much support so even tho screens aren't great I have to check in more or I'll go crazy!! Thx
It took me about 2 years to reach a point where I could start to recover and slowly start to build up my social and physical activity. At 3 years I was able to continue my walking and climbing hobby and exercise classes. I slowly built up tolerance to music too.
I was also non stop before getting meningitis and I think that is why I got it and was so ill.
It took a long time but now I am ok providing I don’t over do things. I learned to slow down and take things at a more relaxed pace.
Rest a lot now but also keep gently moving and be positive and you will improve.
Thank you...this is tough. I feel I've gotten worse. I was going outside to my garden a little & now I can barely walk to the bathroom. Scary stuff. Went to er 2 nights ago, what a joke! He said there's no way I could have meningitis & neglected to tell me of 6 tests that were high..all leading to viruses & infection. I am mortified at how bad the visit was. He also put at the heading of my papers that I came in for fever & palpatations. My temp was 98.5. He put down that I was weak for diagnosis. They always lie. When I feel strong enough I will complain. I asked if a lp would show anything at 8 months & he said no. If things show in my blood then wouldn't it show in my spinal fluid?
I tried at 12wks for an LP to confirm diagnosis and was told too late post infection for anything to grow. Thankfully the GP who saw me initially & sent me to A&E believes VM is most likely. I was frustrated for months waiting for the recognition & expecting some understanding, help or advice
You know what you've been and are going through, don't forget that no matter what the medical profession says. I took printouts of fact sheets from the charity to medical appointments for sceptical doctors.
Oh bless you. I was in the same position 2 years ago. It seems you may need a little longer before starting a phased return. And it should be a slow phased return too. I understand too well that it is a slow & hard recovery which is very difficult to cope with. Have you tried Cranial Osteo? It helped me enormously. It took a long time but 2 years down the line I am pretty much back to my 'old self'
Hello, You can find my 28 year old daughter, Rosie S' Story, via the link on the forum stories from the home page.
We found that cranial massage worked wonders for her. Her job is working with horses on pretty much a daily basis and is very physically demanding.
It is rare for a story to be so positive and we have tried to let people know that this amazing complementary therapy worked for her. It helps release the spinal fluid which VM leaves a blockage for. Rosie is pretty much cured after around 10 sessions coupled with actupuncture, although found awesome relief after only one appointment. She is now free of all pain killers and antidepressants and feels right back to her old self.
We can only let you know what worked for her. It's not for all, but has now given amazing relief for many. It seems the success could be to do with the skill of the cranial osteopath you use. So it is important to find out the osteopaths credentials and experience in this specialised field particularly dealing with VM sufferers, if you can. (Not all osteopaths realise that this helps VM sufferers, it is often carried out on young babies with birthing problems). You need an osteopath and not a therapist who mearly has some training in cranial massage.
If you find you are getting the violent headaches and feeling lethargic and depressed after a few weeks, give this complementary therapy a go, it really could be worth it and save you being on prescribed drugs, along with months, years, of unnecessary suffering.
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I am usually tired after 4 hours. Try to buy this special filter and put it on your screen it really helps to filter the bad light from your PC. What really helped me so far is to avoid TV, looking at your phone or any screen. The less the better. Also, I work now like this: 2 hours of work, then I take 20 minutes break. I lay down with music therapy /nature sounds, calming sounds/. Just close your eyes, listen and relax. It really helps. Definitely, do not stare at your computer for the whole day. 
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