Struggling

Hey guys,

your stories are so inspiring. so refreshing to hear people talk about their struggles, most of your stories I just can so relate to them. I was diagnosed with viral meningitis early October. I was in the hospital for a while and then had in home care. it was the most horrific experience I've ever been through. but I feel very fortunate to have come out of that. I did really well and now I'm suffering from horrible headaches and pain in the left side of my head and in the back of my neck. just feeling really tired and horrible fatigue I wish I could get back to my normal life. can anyone help me with this or help me understand how long this could go on or if there's treatments. I just saw a neurologist today and it just seems like they just want to put me on all kinds of drugs. I'm having such a hard time dealing with these everyday. So painful :(

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  • Hi, I'm so sorry to hear what you've been through! I'm 12months on from viral meningitis and I'm still struggling - I know that's not what u want to hear but everyone is different so hopefully you'll get through yours quicker!! My neurologist gave me pregabalim- I'm not sure wether it's helping or not really! But what is helping a massive amount is reflexology!! I got in touch with menigitus now charity and they have been amazing, the local support officer especially- they understand where others including GPs can't! They're even paying for 10 sessions of reflexology and I feel amazing after it! So I would definitely recommend you speak to them about everything! Good luck and keep positive and smiling it does get easier with time!!

  • Hi, I'm 14 years post near fatal VM this year and so I absolutely understand what you're saying and the good news is it does fade over time but the bad news is the word 'time'. The medical profession dismisses VM as a 'mild' form of meningitis (it irritates the hell out of me, when I was taken into hospital by ambulance three weeks ago and they were asking my wife about my medical history the AT said 'oh at least it wasn't the serious version then' err it nearly killed me people). The key really is rest, rest and when you feel like it more rest I'm afraid. It also means re-defining what 'normal' means as I know from experience and from seeing what other people say getting back to normal is all you want to do. Normal is though a transient state and what was normal pre VM is not the same as normal post VM I'm afraid. If you try to do too much too soon it will bite and it is an illness which is totally contradictory to the way we live these days (unless you live in a monastery) where everything is done at 200mph and we expect the medical profession to be able to sort stuff out quickly. VM doesn't read the same life manual though and it will take time and patience to get through the first months and yes years in some cases. From my experience you won't suddenly wake up one morning and think 'crikey, I feel 100% better' it's not like that but the recovery is gradual so you may not notice how things are improving. The way I learned to deal with it was to keep a diary (not every day, but a day or two each week) of what I was able to do that week and then compare the entries say 3 months apart. You might not notice that you can do more or you feel better but it will happen. A word of caution though, some people are left with long term after effects so normal is how you are today which helps you cope mentally with what the disease has done to you. It can be, and pretty much always is, a trauma for your brain to go through so if you had broken your leg in 8 places you would expect to have to adapt around it and accept that maybe things won't be quite the same again or at least for a few months. Just because the injury is not visible doesn't mean to say it's not serious. The good news is though that VM is not a life sentence and it doesn't last forever the way it is now. I'm proof positive of this as the thing that saved me (being a triathlete meant my system was fit enough to fight it although it was a pretty close run thing) meant that I was determined that I would do something I couldn't have done before VM. I have now completed 3 half ironman triathlons (1.2 mile swim, 56 mile bike ride, 13.1 mile run) in aid of Meningitis Now which I wouldn't have dreamed of doing before VM. There is light at the end of the tunnel and at the moment it feels like a train coming towards you but there is hope and it is daylight, not a train. I write a blog on here so you might want to have a look at some of my posts to see if they help, I hope so. Take care, Jonathan

  • I'm sorry to hear you're struggling. I was diagnosed with vm in August. It's been just over 5 months, was hoping to be all better by now but thankful for how far I've come is the only way I can look at it to get through some days. I don't get headaches much but some days I feel so sore and achey in my back, arms, and legs sometimes. It's very hard emotionally to deal with this. Make sure you talk to someone as bottling it in is no good for you and only makes it harder. I hope your recovery speeds up for you!

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