Meningitis Now
4,280 members1,414 posts

How long will this continue: ( Cant take it anymore :(

Hi guys,

I had viral M in February 2016 and it destroyed my life. I had to leave the job I lived for in a great country and return to the UK as I was unable to recover with the heavy work load. I have spent now over a year getting a lot of rest and taking things, in my opinion, easy, but there are lingering symptoms that I just cant shake and I feel unable to function as a human anymore. Its really getting me down.

I am trying to study to change field but I cant follow simple instructions, even the beginning instructions on the website have me in frustrated tears. I get overwhelmed easily, I am always tired and with a minor headache. I am sooooo forgetful that I shock myself with how insane it can be (sometimes I forget how to drive or something as simple as getting dressed) but its not consistent so I never know when its going to hit and its tiring me out so much to not b able to live life as a 33 year old should. I dont go out, I am too exhausted to do anything and spend a lot of time with headaches so I live just hiding away. I become irritable very fast for small things.

Its been over 2 years but all doctors tell me to do is wait it out as it can take many years to fully recover. Not sure how much more I have left in me.

Any advice?

17 Replies
oldestnewest

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.

Reply

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

Reply

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

5 likes
Reply

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

Reply

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

3 likes
Reply

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!!!

1 like
Reply

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.

1 like
Reply

Hi Starry I read your post and wanted to ask you about the food intolerances you have since VM. I had VM in summer 2017 and my doctor now thinks I may have food allergies. I have experienced tremors, palpitations, heavy arms, anxiety after eating. Heart condition ruled out so I'm open to the possibility. What foods are you now intolerant to? What happens when you eat that food? How did you discover the intolerances? Thanks in advance for your help

Reply

Hi, I discovered it when I developed reflux esophagitis 3 months after the menigits. It was due I think to the menegitis vomiting and ibuprofen along with being physically in an extreme state of stress, perhaps also due to disease related malnutrition which the dietician diagnosed me with. I did get palpitations and anxiety but at the time I ascribed them to the trauma of surgery plus menigitis plus esophagitisplus nerve damage pain and disease related malnutrition. I've read since they are common symptoms in ME/CFS.

I became triggered by more or less anything processed or acidic. For a while all I could eat was unprocessed sweet potato squash, green veg, chickpeas oats, banana and coconut. I was triggered by carminatives. Alcohol, caffeine, onion, garlic, tomatoes (possibly nightshade family intolerance) , cow dairy, citrus, most blossom fruit (oral allergy syndrome) , chilli, peppers (nightshade again) , fried foods, anything processed etc. And I was already allergic to nuts and a veggie to start with. Nightmare. I lost all the weight Id started to put back on a second time.

It was a detective exercise to work out what was the issue as healthfood store test companies are expensive and I read scientifically bogus. I kept a detailed food diary, which is apparently what proper allergist specialists get you to do. Some things were obvious but some not, figuring out it was garlic and onion hidden in things like stock and gravy and veggie sausages etc and nightshade foods was a big break through.

Things that helped me (I believe) are going gluten free (apparently research studies show wheat has zonulin in it which can loosen your intestinal junctions allow particles through which your body starts to react to) blended with a low acid diet by a respected ENT surgeon. Eating almost entirely unprocessed and largely organic fresh food and snacks for 6-9 months. Stopping caffeine, chocolate and alcohol, reducing soya. Taking b12, an immune boosting strain of probiotic, using turmeric and ginger as anti inflammatories, vit D and A, liquorice tea, pumpkin seed protein powder and butter, flax seed for omega 3. Removing parabens and SLES, (I only drink water from glass bottles not plastic).

I was also prescribed pregabalin and i do think it helped stop whatever vicious physical (cytokine?) stress short circuit my body or brain had worked itself into, though it may now potentially be aggravating the fatigue.

I am now gradually getting back to much more normal eating habits which is simply lovely, though many things I adapted to and ingredients I discovered I have kept going like using raw carrots and dates as healthier snacks and a tasty home made muesli recipe and melon for breakfast . 1 tea a day and the odd gluten free vodka and tonic are both fine and I can take small amounts of chocolate, fruit crumble with cream etc so life is finally becoming less stressful on the food front not least due to the supermarkets doing more vegan food, but it did take a long while for my body to change its reactions and start to recover. I just wish all my nutrition efforts had helped the crushing fatigue

Ive no idea if any of this is relevant to you at all as we are all physically so different and unique as is our individual menigitis experience but hopefully there is some stuff in there to explore. I had help from a good nutritionist and kept notes on my diet research (due to my memory issues) and tried to use proper scientific sources and avoid pseudoscience in my decisions so if you have questions feel free to pm me.

1 like
Reply

Thank you so much Starry for the info. I feel like you've answered so many of my questions. My doc has told me to start keeping a food diary. I experienced heavy arms, body almost shutting down, racing heart, anxiety about 20 mins after eating overcooked white pasta with cheese. It was after this experience, that I started to wonder if the meningitis has made me highly intolerant to certain foods. I had a massive palpitation after a white bread chip sandwich and actually got tremors, anxiety and vomiting. I really think now it's a definite food sensitivity. I don't normally eat much white bread or pasta but I've certainly not had these reactions pre Meningitis. I do have reflux issues too which have become very obvious of late. I'm currently seeing a consultant who is trying to work out my constant chest/arm pain and palpitations as not anything appearing on any heart tests. I really think it's my oesophagas too. And that the false palpitations I have may be spasms although my doc says I'm too young for those. How did you find a good nutritionist?

Reply

It may also be worth going to your gp and checking out gallbladder and coeliac, lactose and thyroid and diabetes tests to elimimate them. Your esophagus can spasm and I do wonder if that may have been what I had and its nothing to do with age but with GERD. Thats a lot of white refined beige carbs, fat, and wheat in one go so would strain your digestive system.

I suffer joint pain but havent been able to pinpoint anything so suspect fibro or non functional pain when your pain management system doesnt work right. But it could be a stress or food inflammatory thing, or my endocrine system.

My nutritionist had a full degree and her website says she is a fully insured practitioner and a member of the British Association for Applied Nutrition and Nutritional Therapy. Which had a directory you could search I think, I did check her credentials as I didn't want a 'quack' or totally alternative person..

I didnt always agree with everything she said (she did offer those cambridge igg tests which have no scientific basis) but she was very good and definitely put me on the right track. It cost me 60 for an assessment and 40 for a follow up.

The acid book I found helpful was called Dr Aviv Acid watcher. Fully scientific and referenced, if a little american in places. About £7 on Amazon.

1 like
Reply

Only getting to see your message now. Sounds like you've had a rough time too. How long since you had meningitis? I'll definitely check out that book and look into other suggestions . I've been checked for thyroid , electrolytes and diabetes and all clear. Currently waiting on results for rheumatology tests and I'm hoping it's clear too. But I'd love to get to the bottom if it all. I get occasional must be twitch in lips and arms. Seems to be if I'm exhausted mainly.

Reply

Just to let you know that I also have food intolerances after near fatal VM in 2002. Unfortunately they are caffeine, alcohol and cocoa and people ask me why I now do long distance triathlons. Well if you couldn't drink, eat chocolate and have coffee you'd do long distance triathlons too! My metabolism is also affected, if I stop training I tend to quickly metabolise body fat and by quickly I mean 5lbs in one week.

Reply

I pretty much can't, except in very occasional miniscule quantities, but I'm no triathlon candidate lol. Still incapabable of exercise. Glad you have found your thing

Reply

Thanks Jonad for reply. I'm just getting chance to read/reply now. Yes you are missing out on some of the comfort vices although I'm so impressed that you are completing triathlons! I can't really exercise , just light walking, anything more strenuous brings on a bout of vertigo. I'm 11 months post now and I'm hoping this will improve over time. I guess I'll have to keep my diet more clean and find an outlet like you have

Reply

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

2 likes
Reply

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.

1 like
Reply

You may also like...