I was diagnosed in July and am finding life such a struggle.
I have recently gone back to work which is meant to be part time but they seem to be asking more and more of me. At first I was glad to go back, a little bit of normality and I for a few hours a day I could just about battle through the pains and pretend it was okay. I have come to terms with the fact that this was the wrong thing to do. Faking being okay isn’t going to make it okay. It has actually made it much worse.
Battling symptoms that no one can see is tough on its own, everyone already thinks you’re okay and it’s hard for people to understand something they can’t see. I have found that because it’s viral meningitis i have suffered with people assume it’s not bad as you can’t die from this or it doesn’t affect your life the same way. I am grateful that it isn’t as serious as the others, but that doesn’t mean it’s not serious at all. It can be so disheartening and lonely trying to manage this illness and the after affects. I am married and my husband is now very supportive but i know it’s a struggle for him too. We each have good days and bad days, but those bad days are locked away in my body - no one can see them.
If I could give any advice to others struggling it’s be vocal about how you’re feeling and what your experiencing. It’s not going to physically improve anything but it will help those around you support you when they may not have been able to before.
I made this mistake with work and now it’s harder for them to understand why this is happening .
Every day I struggle with my speech, the processing of information, the constant throb in my head and the ringing in my ears. I am exhausted all the time and yet often can’t sleep because of the above. The speech is worse when I am tired so it’s like living in a constant vicious lonely cycle.
I have been referred to neurology but am unable to get an appointment until Feb next year.
I feel I have let myself down and am even lower because of that.
I hope anyone reading this takes my comments on board and gives returning to work some real thought. What ever your situation is, nothing is more important than your health and the people around you that love you will understand that and support you.
I am hoping my recovery won’t take as long as some of yours has and wishing anyone going through something similar a fast recovery too. You’re not alone
Written by
JenOsul
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I can completely comprehend and relate to how you’re feeling. 18 months ago I was diagnosed with VM and I’m still suffering now. In order to cope with the pain in my head I have radically changed my diet. I looked into foods which inflammatory properties in and I realised when I ate these the pain in my head was heightened. So I looked into food with high anti-inflammatory properties in and now live off these foods and also eat them at certain times of the day which also helps. I couldn’t get through life without this and it enables me not to be on daily pain relief.
It is very hard to the outside world as to them you’re fine. But the reality is so different. My husband didn’t understand at all and the day after I got out of hospital he returned to work and left me with a 3 year old to look after without any help. After 5 days of doing this during the week and when it got to the weekend I was so ill and could have rested for a full 48 hours but he was planning things with friends etc and when I said I wasn’t up to going he said I would be fine. 7 months after we arranged to go away with friends for a 4 day mini break with the kids but it was a road trip break stopping off at various attractions in the country and I was so ill. The driving was too much, I couldn’t control my diet as we ate on the go and on the last day I stayed in the car all day and slept. He didn’t understand and 3 weeks after this I told him I was leaving him (we were having issues before but my illness was the nail in the coffin so to speak).
18 months later I’m still suffering, I have been diagnosed with depression and I’m still suffering with my side effects. Thinking and applying a thought process is so hard. I struggle to stand at a till and count money and get the right amount and there’s time I just can’t work out what coins I need to get to the correct amount so I try not to put myself in that situation anymore and just pay by card. I get dizzy and tired in busy shopping centres and over the past 18 months I developed anxiety attacks in these situations and there’s been times I have just walked out of a shop and left my items at the till.
I have drastically reduced my hours at work because I can’t cope. I do find it hard and although I do think I played it down at the beginning I don’t think people really understand and because I look okay people just assume you are.
Oh Heather, i am so sorry to hear this! Not having support makes the illness so much worse!! My husband and I had only been married for 2 months when I fell ill and he was awful. He went out 5 nights out of 7 as well at being at work. So I was completely abandoned. It was only a few weeks later when I was strong enough I went and stayed with a friend because I was so upset and alone that he realised the extent. Then he started looking into the illness and reading all the meningitis now stories.
It is such an unknown illness, especially in adults and the viral strain. The more vocal we can be the better! No one understands until you explain what’s actually happening.
I now send update emails to HR and my manage saying how I’m feeling etc which helps remind them it’s still happening. Usually every month.
Yes it is so hard and I believe the medical professionals totally underestimate the severity of it and the impact it can have.
I have virtually cut out dairy and use coconut milk as a replacement in coffee. I try to be gluten and wheat free as much as possible or if I’m in a situation where I’m going to eat them I make sure I eat lots of anti-inflammatory foods at the same time. So for breakfast I eat an apple, raspberries, blueberries and grapes. Then mid morning I eat pinapple for dinner I eat either salmon of chicken with turmeric on as this is a high source of anti-inflammatory, alongside either spinach, kale, green beans or peppers, onions and garlic. I try and eat a plum mid afternoon, although this is seasonal. Then for tea something like couscous, chicken and veg or a sweet potato jacket with veg. It’s very boring but it’s my lifeline and I’ve lost over 2 stone out of it which has been a bonus for me as I’ve been trying to shift my baby weight for 3 years.
You learn when to give into your body as well, it’s hard and it’s hard for people to understand. That’s been the hardest for me.
Huge hugs. I could almost have written this post its so similar to my experience.
Firstly, you have done nothing wrong and not let yourself down. If it had been me writing that story and you reading it what words of encouragement would you write?
I underestimated the severity of my viral meningitis because the medical establishment did, which led to me pushing too hard to fast and I have now crashed out of work twice.
I wonder if it may be woth getting an ENT referral to check out the tinnitus and balance issues. There is something called vestibular physio that may be helpful.
Given the fatigue it may also be worth being asking for a referral to be checked out for ME/CFS. Viral meningitis can sometimes cause it.
Do please be kind to yourself and tell your GP how low you are feeding they can help support with talking therapies etc.
Go gently xxxx Its hard adapting to a new reality with a chronic illness, but ultimately health is more important than work.
Im okay but not okay at the same time if that makes any sense.
The ME diagnosis I have been given made sense and took some of my guilt and the 'but why aren't i managing this after so long' issues away. But of course I still have lots of symptoms which have been worsening lately rather than improving and I am going through some kind of grief process at realising this is it now, I have lost my former "normal" life for good. But it could always be worse and I have a supportive hubby and a lovely rescue dog around me keeping me going.
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