I was in hospital for 14 days last year wit... - Meningitis Now
I was in hospital for 14 days last year with viral meningitis. I now fear I may have M.E due to terrible ongoing issues, is this common?
Hi, speaking as a 11 year post near fatal VM survivor I can say that yes it is quite common to be tired, have low energy levels and sometimes more susceptible to viruses and when you get them they lay you low more than ever before. Contrary to what the medical profession is taught and many doctors still believe VM is not always a 'flu like illness which is mild and from which sufferers recover quickly' as the Meningitis Trust survey on VM showed earlier this year. The trick is to learn to listen to your body and to adapt what 'normal' means and I'm afraid patience is the best trait to have because your body has undergone an attack on the brain. It isn't until you have something like VM that you realise how little the medical profession knows about the brain and the impact of diseases like VM. My GP even tried to send me back to work after two weeks as that's 'the usual recovery time for meningitis' the fact that I could barely walk, couldn't string a coherent sentence together and kept falling asleep didn't seem to bother him. I gradually rebuilt my fitness over time and for me it was quite a long time but last year I completed my first half ironman triathlon and I'm doing it again on August 18th so I'm proof that it isn't a life sentence.
The natural temptation with an illness like VM is to just press on regardless and if you do it will bite you back, so rest when you're body says rest and gradually become more active. I know its frustrating and speaking as somone who was very active before the illness it was terrible for me but ironically it was my fitnes that saved my life. Do have a look at the VM factsheet available from the MT website and also why not join the 'I had viral meningitis Facebook group' which you can find here: facebook.com/pages/I-had-Vi... we're all people who have suffered this disease but what we are not is victims. Feel free also to have a look at my blog posts on HealthUnlocked as well which I hope may help.
Hi, thanks you so much for your reply, this in itself has made me feel I am not going mad! I will join facebook as suggested for additional support. I have an appt tomorrow with my GP as worried I may be suffering from M.E. as apparently this is quite common if you have had a previous viral infection. Not feeling confident that my GP will be sympathetic but I am worried that my job is being affected by my symptoms. I will keep you updated and once more many thanks.
Good luck with your triathlon!
Take along the Viral Meningitis fact sheet from the MT website which you can get here: meningitis-trust.org/mening... and ask them how many patients they have treated with VM in the past, most GP's never see it so if you establish they're not working on the basis of experience or fact then you should get somewhere. In the end my GP rang the MT helpline for advice on how to treat me.
Yes, its very common indeed I think to have fatigue. You can label it ME if you wish, but really I believe that any post viral illness will present with the fatigue will give the symptoms you describe. I am four years post VM andalthough my fatigue is not so apparent, and like Jonad was fit prior to this and try to keep as fit as I can. You really do have to listen to yur body and not to push it, I started by walking for about 5 minutes and no more until I didnt feel ill effects of that, then increased it. If you do too much you may find that your "crash", i.e. sleep for hours wherever you are, its happened to me a lot and its most unpleasant and very worrying for your loved ones. Keep well, look after yourself in all the ways your can think of and maybe didnt bother prior to your illness. Feel good things like massage, good food, fresh air, seaside trips, whatever you love, boost your immune system as much as you can and I hope you are well soon. There is some light at the end of the tunnel, I am sure.
I am 8 months post Bacterial Meningitis. Still having the same symptons as the rest of you. As you may know BM is different than VM as far as I know.
I have been a Member of this site since I was released from the hospital on Dec 22nd 2012.
Do any of you know of any other uplifting sites I can look into to help me through my recovery? I have started counseling just recently, but would like to find more support on this horrible disease.
Hi. I read with great interest your post about your experience of viral meningitis, an often very misunderstood form of the disease. I also back up the comments of others that have posted a reply to your question.
I want to share with you my experience to let you know it's not just you and there is a massive amount of support out there, with the Meningitis Trust/UK and also fellow sufferers.
I wrote 2 posts about my experience. One from my perspective but also from my partners. Again, many people forget how effected your family is in all this.
I talk about my experience and how I'm now committed to making others aware of the signs and symptoms of meningitis.
Dave’s story
I want to share you our story, not only to those affected directly and indirectly with viral meningitis but to all others, to help raise awareness and to help all others.
Our experience was through severe viral meningitis. We all have different strains of viral meningitis and differ in symptoms and after effects. What has become apparent to me since my own experience is there are definite similarities.
By sharing our experiences we can increase our knowledge to improve and educate and aid our own experiences and recovery, but to also make aware to others that there are steps we can take to help prevent this horrendous disease from affecting others. This applies to all types of meningitis.
This story is based on my personal experience and also the experience of my partner Pamela who also had the most traumatic time.
It started with a headache
My experience started at 5.00am on the 9th February 2012, I woke with the most horrendous of headaches. Having suffered from migraines throughout my childhood and into my teens, I knew what bad headaches were. This was different but I didn't know why it was different. My partner was also awake at the time caring for our youngest daughter who was suffering with a cough and cold at the time. I complained about how bad I was feeing but said that after taking a couple of painkillers I would be ok.
As the morning went on I begin to vomit, the pain in my head increased. I grew weaker by the minute and any light became unbearable. I still believed that the painkillers would kick in soon! Fortunately, my partner had a doctor's appointment with our daughter. She informed the doctor of my situation and within 15 minutes he was at my home. Within two minutes he had called the hospital. Within a further 15 minutes I was admitted. My doctor knew the signs and symptoms and I cannot thank him enough. I know other professionals have struggled to identify these but I had one that knew what he was doing.
In hospital
So I was admitted to hospital with suspected meningitis. After having treatment for bacterial meningitis over nine days, including drip after drip and lumber puncture the outcome was a severe bout of viral meningitis.
What I hadn’t been aware of until after I had been released from hospital was that after my second night in hospital my partner had been told that the staff had not expected me to make it through the night.
The affect this had on my partner let alone me was devastating. The after-effects have been very strong, ranging from bad head and neck spasms, blurred vision and degradation in eyesight, lack of concentration and memory loss and severe fatigue amongst others.
The road to recovery
Prior to contracting meningitis I was very active at both work and socially (regular runner). I found that as time went on I had very little energy, was constantly out of breath and struggled to walk even the shortest of distances. This caused me to become depressed in myself. Knowing how active I was to becoming someone who struggled to get out of the door was very difficult to handle. I had numerous discussions with my GP about this and although very sympathetic informed me to continue resting and that eventually I would get back to being myself again.
Following a visit a few months ago from a medical consultant who went into great detail about my past, right back to leaving school, through my work history, right up to the point of contracting meningitis, he informed me in his belief, my body had had enough, was exhausted and unfortunately meningitis was the outcome. He continued to inform me that the after effects would heal, however, I would need to change my lifestyle considerably. It is great to have the physical aspect back to normal but also he said you have to have the mental attitudes back to normal too.
With this advice he recommended what is known as "Human Givens Therapy" Their website is hgi.org.uk. I have had a few sessions of this and although it doesn't help with recovering my memory issues, concentration issues, eyesight and neck pains it has helped me through deep relaxation techniques to overcome frustrations that occur. On top of this, I am about to undertake acupuncture sessions to try and help overcome my outstanding issues
Positive thinking
However, How could I turn such a negative into such a positive?
The most positive outcome for me since being diagnosed with meningitis is that I discovered the Meningitis Trust. I have a completely new outlook on life, one where I want and need to help people that have directly and indirectly suffered with this horrendous disease. They are truly incredible, amazing and supportive people. I have discovered not only what they have offered me, but what they have offered and offer so many others.
My recovery has been enhanced incredibly since my involvement with the Trust. I am an active volunteer and have been given the Volunteer Team Leader role for Warwickshire. The joy, the reward and the pride it gives me to represent the Trust I struggle to put into strong enough words. My first assignment was being a volunteer at a Trust Family Day in Godmanchester. The Trust for made this a day that will be remembered forever and gave those people so badly affected by the disease a day they thoroughly loved and where they will still be counting down the days for the next one to arrive.
The day filled me with the most immense emotions and joy. It also filled me with pride that I cannot explain. To wear the yellow shirt of the Trust knowing I was making a difference gives me a pride that will stay with me and live with me forever.
I have discovered the most amazing family and one that has a sole intention of helping people. Helping people who have been affected directly, their family and their friends. The Trust has full time staff, 100's of volunteers and thousands of followers. Many who have experienced this disease first hand and want to help their own recovery but also want to help everyone else. It truly is an incredible family.
Looking ahead in 2013
In April this year, I ran the London Marathon. This was a massive honour for me to represent the charity that is so very close to my heart and it also gave me a massive personal goal to aim for. Through setting my sights on such a big achievement, this forced me into more exercise and although amazingly tough at times it increased my energy levels immensely. I still get bouts of tiredness but I have learnt when to rest and my fantastic family and friends have known when to let me rest!
I still have severe short-term memory issues along with some of the others I mentioned earlier. One example was during cooking, I walked out of the kitchen and immediately forgot what I was cooking! Just one example of an issue that hits me.
However, with everything I am looking to achieve and currently doing with my work for the Meningitis Trust my brain is becoming more and more active and this is so important to keep developing alongside the body fatigue we experience. I really cannot thank enough the Trust for helping me and supporting me and having real faith in what I am trying to achieve.
Since my time with the Trust, my family and I have formed many very close relationships with both members of the Trust themselves but also their volunteers and followers. They are all truly amazing people.
From a recovery point of view for my own experience and for others, this varies immensely but all I can say is we are not alone and that the after-effects are known by others who can support you. I have not been able to go back to my previous employment yet and who knows when I will. I am however, focusing on what I love and what I want and need to do - supporting others through my work with the Meningitis Trust.
I hope this story helps and maybe inspires others as I have myself been inspired.
I can be followed on Twitter @WarwickCastleDH where you or anyone else can contact me and or direct mail me.
Please read part 2 of this story which focuses on my partner Pamela and her experience throughout. You can find this by searching on this site for "Viral Meningitis - A couple's story - Dave & Pamela part 2
Very best regards.
Dave
Great article you wrote. I am here in Phoenix, Arizona and was diagnosed on 07-06-13 with VM after severe headache and neck pain sent me to the emergency room here. I agree with everything you have stated about dealing with VM and even the most seasoned doctors over here do not realize the after effects that some people deal with after diagnosis. I am struggling with fatigue, neck pain, nausea, etc... and any time you feel a cold coming on....holy crap... does that make me nervous. Congrats on getting to run the London Marathon. I am slowly working to get my physical activity back up and running. god bless
Hello and here's to a safe and speedy recovery New Year to you.
Thank you so much for your comments. So many people still misunderstand the massive effects that VM can have on a person. Only last night did someone say to me "oh, at least you didn't have the bad one"!!! I find that so infuriating and I have to bite my tongue not to say something I shouldn't.
I really do hope you gain your fitness back soon. Training for the 2013 London Marathon certainly made a massive difference to me and that training continues as I'm running the London 2014 marathon for Meningitis Now charity.
I still panic now when I get the slightest of headaches and when feeling under the weather. As long as we continue to spread the word and raise awareness, that can only help us and help others. I'm here anytime should you wish to ask anything or just need a chat.
Please take care and hope you get better very soon.
Very best regards and wishes. Dave
GP told me to expect to be drained,tired , dizzy, possible headaches for at least six weeks.post VM. He was right.
I'm 5 months in, and still suffering fatigue, insomnia, confusion and headaches.
