How long will this continue: ( Cant take it anymore

Hi 👋

Hugs to start with.

I’m sorry for feeling so rubbish love. I’ve got no personal experience with it as it was my son who had it. But yes, it can take years to recover. Your symptoms fall under lots of different spectrums so you could do with a MOT to check there’s nothing else going on. You sound a lot like me, and I’m hypothyroid. I’ve forgotten my children’s names before now!!?

Don’t resign yourself to thinking this is quality of life forever, it won’t be. But it’s like the doctor tells me about my son, it’s a brain injury, and any injuries need time. I really hope it gets better over time for you. It’s almost like like your life’s on hold I bet.

It must be very frustrating and exhausting. Getting over the illness is only part of the battle. But your recovering, and you WILL recover.

❤️❤️❤️❤️❤️

Big hugs hun.

Dear Jenno,

I'm so sorry to hear of your suffering. I'm still in the throes of acute VM, 8 days into my adventure, but I can already tell it is a game changer for me, and I have lots of unanswerable questions about my future.

Regarding your studies, does the college you are studying at have any special services for those with disabilities?

Please don't give up. I know it is discouraging and depressing. I pray for a full recovery for you so that you can live the life you envision.

Take good care of yourself. Love yourself to bits.

Best wishes,

Amrita

Hi Jenno, I had near fatal VM in 2002 so I hope I can help. Two years into recovery isn't that long I'm afraid and what you will find with VM is that you have to change what 'normal' means now. You say you are taking it easy or what passes for taking it easy for you but this may not be enough and this may be what is keeping you from progressing? If you're trying to do things you did before VM then this may not be the best idea and believe me I know how frustrating it is. I was a very fit 39 year old when VM struck, training for a sea swim triathlon and living life at 100 miles an hour. Within 10 days it was like someone had aged me 60 years and hit the reset button on my fitness. I know you may not think it but you are lucky in the sense that the doctors you see actually know something about VM, most don't and don't realise how long it can take to recover.

I felt like you do now, for a long time, that VM had destroyed my life and I even wrote a blog post on here called 'oh no it's angry dad' about how I felt and i particular people saying to me 'I bet you're glad to be here now' well yes of course I am, I didn't want to die at 39 with two young children and a wife I adore and love to bits, but I was also bloody angry at what VM had done to me. It took me a long time to realise that actually what VM had done had changed my life not destroyed it. So I couldn't do some of the things I could do before and resting drove me nuts but I realised that getting back to normal was more about what does normal mean for me now rather than what it used to. Unfortunately even if you think you are taking it easy the VM will tell you if you're not. It's a natural human instinct to want to get back to how things were, we are pre-programmed not to like change (it's a survival instinct around not doing something different which might get us eaten thousands of years ago) but at some point you have to reflect on whether you are resting enough and whether VM is still biting. Once I reached that point, and it was tough as it felt like admitting defeat, I stopped trying to regain my old life and started living life as it was now for me. My recovery was slow and I have been left with some after effects but because VM recovery can be slow I kept a diary of how I felt each day and it wasn't until I looked back after 6 months that actually things had improved, not massively, and I have recovered as much as I think I'm going to.

I was told to stay away from endurance sport for 5 years and to get used to the idea that whilst I was still here things would never be the same. After the five year break I came back to triathlon, at least 3 stone overweight, and as unfit to a point I cou if you ldn't believe. In 2012 I decided I wanted to do something to celebrate being a VM survivor for 10 years, my way of sticking two fingers up to VM and saying bring it on you bas***d so I entered a half ironman which is 1.2 mile swim, 56 mile bike ride rounded off with a half marathon of 13.1 miles of running. For people that haven't had VM you have to be clinically insane to take on a long distance triathlon let alone for someone who had nearly died because of VM. In fact my daughter, who is a nurse, said to me 'let me get this straight, you want to celebrate almost dying by nearly killing yourself', yes pretty much. Training was long and slow, as was the half marathon (my coach joked that he had timed my race with a sundial) but I did it. I had never even considered doing a half ironman before VM let alone trained for 10 months to do it so VM actually helped me do something I didn't thing I could do. Naturally I was raising money for MN and I raised about £1000 and just to prove it wasn't a fluke I did another two in 2013 and 2015. Unfortunately unrelated serious illnesses have stopped me in my tracks but I will be back doing lunacy in 2019 having to content myself with a couple of shorter races this year.

It may feel like VM has destroyed your life but my experience is that it has just changed it and it may take a while to adapt to the change but the key thing right now is to listen to your body. You need to rest to the extent your body says you should not really what was taking it easy before VM.

Last year I was privileged enough to be asked to be a Community Ambassador by Meningitis Now and I am particularly keen to support other VM survivors, if it would help I can PM you my email address and I'm happy to just be a sounding board if that would help or to help explain how I recovered. I also wrote blog posts on here about my recovery (I must do another one, it's been a while!), just click on my profile and select 'posts'. The key thing is that you are not alone and there is support out there, call the Meningitis Now helpline 0808 80 10 388 and they are brilliant even if it is just to explain how you feel.

I hope this helps and the best of luck, Jonathan

Don't let get you down. If you worked your body too hard in the beginning that was not good so now you have to listen to your body if it hurts stop rest try again later you have to build up slow good luck helpman

Hi, I'm so sorry you are feeling so stuck. I understand this feeling completely. It was April 2016 for me, I felt like it took my life from me in a lot of ways, though I remained very thankful that it didn't actually take my life as it does for some. I had VM too, I was in a wheelchair for about 4 months and had to teach myaelf to walk again. I also began having seizures which were anxiety triggered non-epileptic attacks. They were an awful part of my recovery and of course i couldn't drive for two years thanks to them! Still haven't got a car but I do have my licence back thank heavens. I still struggle with muscle fatigue at times and I have 5 children so it is very difficult. The main thing for me was noise sensitivity too. If there are too many sounds to focus on i can't deal with it and get very agitated. One thing that really helped me and I'd love for you to to try, to see if it helps you too is complete brain rest for 15 minutes every couple of hours. It lets your brain recharge itself and honestly it helped me a lot. At first i thought it was a silly idea but you won't get better until your brain gets proper recovery and us resting in front of the tv or even with a nice book doesn't help because our brains are still working hard to process these things. You need a totally dark room and just sit and lean back and close your eyes. You don't have to sleep. You just need quiet. I was advised by my physio to do this for every hour of activity (that was impossible as you can imagine with work and 5 kids) But even just once a day will make a difference i'm sure. Sending positive vibes your way. The things i have achieved since those dark days when i thought i'd never walk again or get better, i've amazed myself and i know you will too. Xx

Sorry this is so long. But I found stuff that really helped me get back to normal quick, and hoping they can help others suffering through same nightmare I was living in.

When I developed vm, I, like others, was athletic, in great shape, and living very healthy organic lifestyle.

For over a year and half I was still having daily 24/7 headaches, head pressure, brain was cloudy-fogged, memory loss, lymphatic pains that were crippling.

I was taking immune boosting supplements (zinc, echinacea, dandilion root, and vitamin c) and Neem capsules for my hsv, and neem oil for my hsv outbreaks. I also took some brain and energy supplements: gotu kola, grape seed extract, and apple pectin.

Chief complaints were pain in groin lymphnode and headaches. I started trying to find any relief. While researching into lymphnode relief, I came across Graviola tea. The information I found was a group of oncologists who recommended their lymphatic cancer patients drink graviola tea while going through chemo for pain relief.

I thought, if it's strong enough to help cancer patients, maybe it could help me.

I ordered 30 organic tea bags off Amazon. I drank two cups a day, one in morning and one in evening, sweetened with raw honey and creamer.

A few days later, I woke up with no headache (1st time in over a year and a half no headache). Within two weeks, all of my headpains, eye pain, head pressure and neck issues were gone.

Within two months, I felt more normal than I ever expected. All other symptoms had decreased significantly!

After a couple of months of drinking tea, I cut back to one cup a week in the a.m.

I also cut back my supplements to 5-7 days I take, 10-14 days I break.

I cut back my neem oil to once a week before bed.

Whenever I take anything, I take a milk thistle to keep my liver and kidneys from getting overloaded.

Two years now of feeling good and I only have pain, fatigue, and issues if I run out of my graviola tea for more than a month. At a little over a month without, head pressure and lymph swelling come back mild and then slowly build up to pain. I buy more, go back to drinking daily, within two weeks back to normal, then cut back to one cup a week again.

Hope this can help others get lives back!!!

I relate alot to what you say. I'd not long promoted when mine struck after major surgery for another condition. This was 11 months ago and Im on my second attempt at a phased return, only just scraping through at 4 hours 4 days a week and resting the rest of the time. Ive been lucky as despite my 6 days in hospital others have had far worse. Ive been left with severe fatigue and concentration/memory issues along with food intoleranced and nerve and joint pain. I had a fair bit of counselling and cbt but am still mentally struggling with the whole coming to terms thing with how my life has changed, especially career wise, this week I admitted to my boss I cant see myself making it back to full time in the medium term and to ask for work a disabled car park permit due to my fatigue. It really hurt and felt quite ridiculous. I dont associate with the d word and feel a fraud as for most of my work periods I do function seemingly normally on the outside and look quite well having finally last week got back to my pre illness weight. But my work so far have been tremendously supportive and made lots of adjustments, so do have a chat with your college. I do worry that may dry up now its been a year, but only time will tell.

Ive a good specialist chronic condition pain physio whose helped me this far, which for meningitis may be relatively fast even if it feels glacial to me, and she's the only one who mentioned it all being the after effect meningitis. If you can find one, perhaps via your local chronic pain clinic id reccomend it.

I looked into nutrition alot and think that has been beneficial over time too.

Im also looking into the medication im on as i discovered that may be exacerbating some of my symptoms, so well worth talking to your gp.

My physio has mentioned gentle tai chi for health, also because of the meditation aspect and Ive summoned up energy to try that last week. Theres definitely something to do with brain agitation in all this.

Hi , I had VM 4 years ago and I had long lasting and severe after effects. It took me 2 years to reach a point where I could start to recover. Then it took another year to improve. Now at 4 years I am feeling more like my old self.

I can now drive long distances.. I couldn’t drive at all for 2 years.

I can read and concentrate .. couldn’t do that for more than 5 mins.

I am fit again and climbing peaks and mountains.

I had fatigue and chronic migraine until 2 months ago and now they are much better.

Biology takes its own time I have found .

The best advice I can give is: eat a very healthy diet with lots of green smoothies . Turmeric is said to help the brain and inflammation .. I took it.

Acupuncture helped to raise my energy and relieve symptoms .

Daith ear piercing helped reduce the pain of the migraine and Botox has been very helpful.

Learning to pace myself and build in lots of rest and sleep was crucial.

Gently moving was crucial too such as gentle walks.

I can only tell you that it takes time and accepting that will help you recover rather than fighting it.

I also had to reduce the hours I worked but when I was feeling better I studied for something I always wanted to do so I now see that as a good opportunity.

You will recover , it might take a while yet so try to roll with it , enjoy the time to rest, enjoy the little things and it will help you through.

Good luck x

I sympathize 100%. Now for me, 21 months after being in hospital and still trying to recover without any help or support whatsoever from the medical profession I now realize the only way to make very gradual improvements is to rest. This is enormously frustrating but it is undoubtedly the only real way forward. There are thousands of homeopathic 'cures' out there, none actually provide the magic answer we are all looking for. After pleading with my neurologist to listen to me and offer some sort of help the only thing he could prescribe was Amitriptyline which was completely useless and actually made me feel much worse. The common ruse used by these people is to suggest migraines are the problem when they don't have a clue what is actually going on. My advice to anyone is to stay mentally strong, rest as much as you can and things will eventually improve. It is a very slow process for the brain to heal after any traumatic event and recovery even very slight recovery will be a long slow process. My last comment which has been reiterated by many others on this site is shame on the medical profession for their total lack of after care and compassion and needless to say their arrogant dismissive attitude.

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.

Kind wishes and best of luck