Viral Meningitis A year later and still having problems

Last September I contracted Viral Meningitis and my world was turned upside down. I was off work for 6 weeks in hospital for 1 of those weeks and went back too quickly. I started back with little information on what to expect of myself. Neither did my manager. With my normal processing, memory and evaluation skills depleted I struggled on working extra hours to make up for my shortfalls. For the past 10 months I have had constant coughs, colds and infections without taking any time off to recover. Recently I had chest pains and a heart valve problem has been identified, probably not connected but worrying and intrusive procedures. When I came back from being off from having the procedures. My Manager pulled me into a meeting room saying she needed someone with good health and full strength and is this the job for me. I was given the option to downgrade my job and move to another team. Feeling so week and unable to function I accepted the change. I am unwell again (another cold/cough) and off work and can't stop crying huge anxiety and coming to terms with what's happened. It's been so public and feels humiliating.

This has knocked my confidence, my well being and I feel powerless to move on. My OH at work has been supportive and suggested reduced hours to get my stamina back. Just feels like it came too late. This should have been done when I first got VM and my and my manager's expectations could have been monitored.

For anyone who has had this awful illness please do not push yourself too early otherwise you may pay for it later on. If you can take as much time as possible and ask for an Occupational Heath assessment to protect yourself from not only demanding unsympathetic managers but yourself. If your like me you are hard working and a people pleaser it can have a detrimental effect in looking after your best interests.

Your health is way more important, protect yourself and put your recovery first.

I'd love to hear anyone's thoughts and views on this please x

13 Replies

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  • hi Lisa, oh sweetheart 👭

    your absolutely right, occupational health should have been involved with something as serious as VM and rather than being negative with you they should have pulled out all the stops to help you. You should have had a very steady phased return, probably over 6months legally on full pay. , couple of mornings or afternoons a week and built yourself up. You are going to pick up every bug under the sun, you immunity has been compromised.

    recovery is very much play it by ear, good days then crap days. Your manager needs a degree of flexibility. This isn't your fault! ❤

    do you have a HR support you can do to? Are you on a stage 1 sickness process? Or has it all been verbal? Of course your going to be flooded with anxiety. Your in the right place ❤

    you need to learn your limitations and your work have a responsibility to a duty of care. You prob have a bit of post traumatic stress, that might need a friendly ear to work through. I worked for a long time in HR so I'm happy to help you if i can, and I'm also a mother of a baby who's just had BM so hope i can help u there too. Xxxx

  • Thank you so much for the words of support. You've given me great strength and confirmed my belief things haven't been done correctly. Now that OH are involved I feel I'm getting the correct support. I just need to reconcile in my mind what's happened, accept it and work towards getting my health and strength back. Thank you once again L xx

  • Hi Lisa, I'm 15 years post near fatal VM so I know exactly what you mean. Although it may not feel like it at least OH and by the sounds of it your doctor are not saying VM is never more serious than flu. That's the common response.

    I was off work for 6 months and even then I don't think I was ready to go back to work but financially I had no choice. Like you I had every cough and cold going but slowly over time it eased and Vick's First Defence helped stop the colds before they got started which gave me a sufficient break to rebuild my immune system.

    No doubt about it, having VM can be traumatic and it sounds like you've been through the mill. There is though light at the end of the tunnel. After a 5 year break away from triathlon I have since completed several races and also three half ironman triathlons ironically something I wouldn't have considered before VM.

    I am now a volunteer community ambassador for Meningitis Now and I also wrote some blog posts about my recovery, on this site (click on my profile and then click posts). Please feel free to have a read and don't hesitate to message me if I can help further, sometimes a listening (email) ear can help.

    Good luck, Jonathan

  • Hi Jonathan

    Thank you for your words of support. You've helped me to see there is a light at the end of the tunnel however bleak it feels right now.

    I've been reading your journey and found it uplifting and inspiring, thank you.

    Lisa xx

  • The last big attack I had was in 2014 and the doctor at that hospital did more tests on me that time than the other 3 times ive had it ... he came in and told me that my VM is the one that can kill you and told me that I had to get myself to the hospital as soon as I know its on me ... so after getting my first attack in 1998 2002 2012 2014 I now know that I have to keep calm try not to stress which is impossible and try to keep really healthy as he told me they are the two causes of the Meningitis to attack stress and keeping healthy ... I am currently minding my daughters 12yr son who has ADHD and 4 dogs so yep im stressed its been 4weeks only one more to go and I will be back home to my peace and quiet ....

  • Hi there. I had VM June 2016. It took me 9 months to get back to full time and then used my accrued annual leave to break up the weeks. Please go back to your GP and tell them everything. They can do blood tests to check there is nothing else they can help you with. They can help (if needed) with your emotional needs. For me still being unwell for so long lead to depression & now its treated, I can cope with the lingering fatigue etc. Good luck. Ps. I think OH should have been called in earlier and HR/Your Manager failed in their duty of care as you were clearly not well enough.

  • Thank you for your reply, your kind comments came just at the right time🙂

  • Hi

    Like you, I returned to work approx 5 weeks post VM. Even I was lead to believe that I'd just had something similar to 'a bad case of the flu', so on that assumption I pressed hard to return to normal.

    Unfortunately though, many of us don't have the luxury of being able to take extensive time off from work. It just isn't possible. I'm a single parent so long leave from work wasn't an option for me. I'm now 18months post VM and still get problems from the original illness. Although things are better than they were. I ask myself if it would have made any difference had I taken longer off from work? maybe, but maybe not! I do work slightly reduced hours now, 27.5 hours per week, as I don't feel able to return to full hours. My pay has taken a hit, but it's a compromise I needed to make. As I've read from others on here, recovery is a very individual thing. I guess some do bounce back, but for many, the dreaded illness tends to plague us for some time after.

    It's good that you have OH supporting you now. Such a shame that they couldn't have stepped in sooner really. I agree that your HR failed in not stepping in sooner.

    Wish you well with your recovery! The support I've received from 'Meningitis Now' has been great. They've always been there for advice with the number of questions I've had.

  • Hi Thanks for your reply, I'm glad to hear things are getting better for you. Unless you've experienced this horrible illness I don't think anyone can fully understand what it does to you. That's why it's so great to have support from lovely people like yourself who can share their experience and stop you feeling so isolated.

    Wish you all the best

    L

  • I was told it can take 1/2 years sometimes to get over a bad dose and so far that's what I have experienced ... take it easy and just don't stress ..

  • I really empathise with you and had a very similar experiance. I was very ill, went back to work way too early still not well and it just knocked me out even more. My manager had not understanding, refused a phased come back and after a few weeks placed me on a performance report. As you have noted after this time it is very hard for your brain to process in the same way or at the speed it has previously. The added stress and trying to catch all the time just left me like a zombie the rest of the time. The outcome was that I got my union rep involved and he was amazing(mine was from Unite and totally brilliant). He took on the fight for me as I felt so helpless and useless. I actually ended up leaving the job with a settlement, it was terrifying at the time but like you my advice with VM is to give yourself some real time to recover at the start. It is very hard if you are dependant on an income bit if you don't you can just end up suffering for longer. I still suffer really bad tiredness and don't function half as well after about 2.30pm in the afternoon. Like you I seem to pick up a lot of sore throats and bugs very easily. It is a really long recovery process and I wonder if you ever do as it has been a year for me too and sometimes you just want to feel normal for one moment x

  • Thank you for replying and putting into words so well the struggles you have faced. Our situations are so similar. Now my OH have become involved I hope it's not too late. They have put me back on phased return and I feel well supported now. Just wish this had happened a year ago and I wouldn't have had to go through the turmoil of the past year.

    Time will tell, like you I become very tired and muddled after 2.30pm. My best time is between 9 and 2 after that my processing skills are not great.

    Again thanks for the response and good luck with your recovery

    L

  • Giving yourself time to recover is the most important thing in your life. In 2008 I have meningoencephalitis, I spend one week in intensive care and 3 weeks in hospital I was off work for 5 months. Even then, when I went back I was in what I thought of as a "dream state". Nothing made 100% sense at the time, I was fatigued and concentration wasn't what it was. Maybe I was lucky, but I was able to start back to work on reduced hours. My GP was very supportive and said if my employer gave me any grief he'd just sign me off for 2 weeks. I told my employer this and they became a bit more supportive.

    Given time, things did improve, now, almost 10 years on I do suffer from fatigue, I can pretty much fall asleep whenever I'm not doing anything :-) If I'm under any sort of stress I get really tired, we tend to make light of it and I try not to get too stressed (easier said than done of course)

    Looking back now, I think the most important thing is that I gave (and was able to give) myself time to recover. The best advice my Doctor gave me; "if your tired, go to sleep". This is something I often quote! I know it's not always possible, but it is your body's way of telling you you need to rest.

    One thing that keeps me going is the thought that I was lucky to survive and that's really the bottom line. Sure I was unlucky to get the illness, but I'm still here. We soldier on and I make sure I bore anyone who will listen about how lucky I was to survive and the older I get the more I embellish my story ;-)

    Good luck, and hang in there, you're a true survivor...

    Graham

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