11 months and still recovering

I contracted meningitis in January this year, and 11 months on my life is still affected by this awful infection. Constant headaches, memory loss, chronic fatigue just to name a few! Everyday I wake up and just wish I was back to normal again but can't help but think I will never be normal again! 😢

[Jonad724]

So sorry to hear you're still suffering but there is light at the end of the tunnel. You don't say which sort of meningitis you have had but if it's viral then this is quite normal for recovery and you are not alone. If it was viral then you will to adapt your life to cope with what it is throwing at you so if your body tells you to rest then rest, if you don't then it will not improve. I had near fatal VM in 2002 and I also write a blog on here so please have a look to see if that will help reassure you. You need to know though that whichever form of the disease you've had your brain has been in trauma to varying degrees and it does take time to recover.

I learned that being 'normal' is a fluid concept and that for me at least I had to change what normal meant. The life I previously had is not compatible with what the VM has left with me so I have changed things one at a time and not all of these changes are negative. By having to rest meant I spent more time with my family and having almost, as my neurologist told me, checked out of hotel life I went from being a mediocre short distance triathlete to being a mediocre long distance triathlete! I now race half ironman, something I wouldn't have dreamt of doing before VM.

Recovery from VM can take a long time and it's not helped by the medical profession being taught that it is never more serious than flu so therefore there are no after effects. You wouldn't believe the battles I, and others here, have had with doctors trying to convince them that what they are taught is wrong. I was even discharged from hospital the day after almost dying of VM because they said I was over the worst and would soon recover. I was rushed back in under blues and twos three days later with a GCS of 7, no discernible blood pressure and heart rate barely there and they still sent me home 12 hours later. I was off work just under 6 months.

So the best advice I can give you for the moment is try not to wish for the life you had and trying to get back to that version of normal may not be possible so you have to re-think normal if that is the case. The thing is don't fight your body and rest is the most important thing you can do to help your recovery. Good luck and share your experiences and you will see you are very much not alone.

[Pinkladytracy in reply to Jonad724]

OMG I can so relate to you ! And your words are singing the same as mine bar the iron man bits!! I had VM almost 11 months ago now and I'm still not well! I have collapsed through doing too much on 2 occasions the doctors are baffled and no one understands bar the meningitis now team and you guys on here! How can I access your blog as I would relish to read it? I've fairly new to this and only posted once so any help would be appreciated ! Im currently under a new neurologist and have just had an mri and I've got an EEG on Tuesday! Im obviously worried about what they may find but I'm sure it's just the aftermath of the VM! Im back to work again 3rd time lucky and I hope to get back to normal! But u don't really how precious normal is until it's gone and you find a new normal instead! X

[Jonad724 in reply to Pinkladytracy]

Hi, my blog is here healthunlocked.com/jonad724, I post on here to share the experiences I have had about VM in case it helps anyone else. The one piece of advice I would give you with the medics is to check first that they have treated someone with VM before and if not get the leaflet from the Meningitis Now website and take it with you. They all think meningitis is all the same and that VM is worse than flu even if the patient almost dies. I was discharged the day after because I could stand up, yes with two nurses holding me up I could. Would love any feedback on my posts, you can comment on them and I'll see them.

[1251]

I am sorry to hear how you feel but like the reply you have had I would say the same you have to rest and not push yourself in any wayI had meningitis 18months ago and I am just getting about now .I have had no after care and my daily headaches and fatigue have been terrible.The doctors are terrible as well I am sure they think you are making it up how you feel .You have to try and find a doctor that understands how you feel .I had to go private for that and under gone a lot of tests.Be care full what medication you are put on as that can make you feel bad.Good luck with your recovery and I wish you well and a happy Christmas.1251

[Pinkladytracy]

So sorry to hear your troubles I had VM and 11 months later still I'll! But I got stronger bit by bit and u will too and u and I can't let this beat us! Stay strong and keep smiling!

[Bonkitty]

That is much the same for me 19 months on. I have a good neurologist whom has prescribed topiramate to help control the chronic migraine I have been left with. I attend a pain clinic who have enrolled me onto a chronic pain class where a group of us have been guided through a process of coming to terms with living with pain and fatigue and how to take control of this new life to get the best out of it. It may be worth asking your GP to refer you to such a clinic, it is run by CBT practitioners and has been very helpful.

I can also recommend a good selection of ear plugs that can be purchased at Boots especially the decibel reducing ones if noise contributes to your headaches.

I totally sympathise as every day has been an uphill struggle for me since having meningitis. Acupuncture has also been a big help for the headaches and fatigue. I go once a week. A good diet high in vegetables, green smoothies, vitamins, avocados, beansprouts etc have also helped me gain wellness and re gain energy.

Hope this helps

[Hidden]

Thank you all for taking the time to reply, it is good to know I am not alone and you have all confirmed what my doctor has been telling me for months it's just so hard when on the outside I look like a normal person but on the inside it's destroying me! I feel like everyday I have to put on a front and pretend I'm ok, when I'm not! I received counselling but apart from that I have had nothing else, no referrals, nothing! I refuse to take any of the anti depressants my g.p keeps prescribing as I am not depressed just exhausted, but no one seems to understand this!! Thanks again for your support xx

[Mdroney]

Hi Emmadale, I'm 59 yrs old, & 2 1/2 yrs post VM . I'm still experiencing symptoms of VM. Somehow, reducing your stress level , lots of rest & a healthy diet & exercise are key in managing symptoms. I do not take any meds, but also have others symptoms like blurred vision , tremors, heart palpitations , ringing in ears & at times tingling in limbs. Please take your symptoms serious, & listen to your body. I've accepted the fact that this is my new normal . I will be retiring early . I def have my good & bad days. My neurologist is starting me on B12 shots as well as dissolving vitamins to help with cognitive issues as well extreme fatigue. Hoping that will help! Take 1 day at a time & try to stay positive! My best to you!

M.