VIRAL MENINGITIS - A COUPLE'S STORY - DAVE & PAMELA PART 1

VIRAL MENINGITIS - A COUPLE'S STORY - DAVE & PAMELA  PART 1

The first part of this two part blog, 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, eyesight and neck pains it has helped me through deep relaxation techniques to overcome frustrations that occur.

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 recently 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

I have also recently been give a place to run London Marathon in 2013 for the Trust. This is a massive honour for me to represent the charity that is so very close to my heart and it also gives me a massive personal goal to aim for. Through setting my sights on such a big achievement, this has forced me into more exercise and although amazingly tough at times has increased my energy levels immensely. I still get bouts of severe 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. Only this week walking out of the kitchen and immediately forgetting what I was cooking! Just one example of an issue that hits me regularly.

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.

Should anyone wish to donate to my fundraising site for the London2013 marathon in support of the Meningitis Trust then please visit bit.ly/Wtxh27

Please read part 2 of this story which focuses on my partner Pamela and her experience throughout.

Very best regards to everyone

Dave

9 Replies

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  • well done Dave, great blog :)

  • Hi Tiga.

    Thank you. I really appreciate it. Writing about my experience and also Pamela's (my partner) was something that came from the heart but also very emotional as it brought everything flooding back. I just hope it helps others out there, particularly viral sufferers as we are so misunderstood my so many. I notice you had VM 14 months ago. I really hope you are well on your way to recovery. Keep strong and never forget that we really know what it's like to have VM.

    Take care and very best wishes.

    Dave

  • HI Dave, yes doing ok, i am one of these people "done that, moved on LOL" since VM, had pluresey twice, SVT, and heart opp and two opps in my jaw, the way i look at it as VM did not kill me, everything else after that is a walk in the park.

    To me it is like a bad dream, the only reminder i have, is the back pain from the 12 needles they jabbed in my back, and the thick feeling in my right ear, but apart from that, well you know. it is what it is haaa

    And you you will help others that will read your blog

  • Hey Dave I have not long been out of hospital after having vm. You were lucky to have such fab doctors that knew what you had as I was in and out of hospital as no one knew what I had until I pretty much passed out as the walk in centre, they finally rushed me in and treated me for bacterial Meningitis then after doing a lumbar puncture it was confirmed that I did Infact have VM. I am suffering still but mainly with total exhaustion. I have 2 small children and I am a single mother so finding things pretty tough. Be great to hear back from you.

    Gem x

  • Hi Gem. Lovely to hear from you. Firstly my apologies for taking time to get back to you. For the past few weeks I'd been head on preparing for my first ever Meningitis Trust Charity Evening which took place last Thursday. Was really hard work but in the end the evening went absolutely amazingly well. Far beyond my wildest dreams. We raised £1,800 on the night and to be honest it still hasn't sunk in. I have a cheque presentation later so I'm sure it will then.

    Anyway, thank you so much for sharing your story. I can only just imagine how difficult it is for you being a single mum with 2 children. Children are demanding at the best of time! I am nearing my first anniversary of contracting VM. 9th of Feb. Out of all the after effects the one's that still stand out for me is my short term memory loss, concentration issues, eyesight degradation and fatigue. People see me training for the London Marathon that I am doing for the Trust and think that I am over all that. Not at all. There are times when I don't have any energy at all. This used to creep up on me but now it's more of a sudden attack. I have to admit though that the training I am putting in as improved my fitness a thousand times over. The work I'm doing with the Trust to raise awareness and funds is really getting my head active again but short term memory can be dreadful and often is. I found that changing my diet helped a lot. This was on the recommendation of my consultant who told me to eat far more fruit/veg (the usual health story really) but it does seem to have helped too. For you it must be so difficult. You must be exhausted as it is looking after the children. You really do need to rest when your body tells you too but I know that is easier said than done. If you do get the chance to exercise then see if that works too. I'm no doctor and apologies if I am stating the obvious but I'm sharing what is working for me and I hope can go some way to helping you.

    Please stay in touch. Not sure if you are on social media but my twitter is @WarwickCastleDH and Facebook is Meningitis Trust - Dave Hancock Awareness & Fundraising.

    Please take care and catch up soon.

    Dave X

  • Hi Dave my daughter 22yrs old had VM 3 weeks ago she was so poorly and docs said it was life threatening, She had VM 2. She is such an active lively happy young woman but this illness gas knocked her , I knew very little about VM untill she had it. My fear is that it could return. as the docs informed us there is no cure for the viral within her body.

    Have you any ideas as to how she can best manage this she has always ate healthly and keeps fit. She is recovering now but she is very tired alot of the time.

    It was interesting reading your strory

    thanks Summerose

  • Hi Summerose. So lovely to hear from you and I'm so sorry it has taken me so long to get back to you. You will see from my post above that over the last couple of weeks my head really has been in preparing for my Meningitis Trust Charity Evening.

    I do hope your daughter is recovering well. I can genuinely relate to what you are saying about your daughter post and pre VM. I myself was so active at work and to be honest as active out of it. After I contracted VM my consultant referred to it "as the medical equivalent of being hit by an express train"!!

    And it certainly felt that way. Losing any energy I had completely, pains everywhere, no concentration, no memory and depression kicking in at a rate of knots!!

    With regards to what your doctor has said, there isn't a cure for the viral. However, your daughter is not at any further risk to getting meningitis again as anyone else who hasn't. Whether you have had VM or not, you can still get it. So can I but no more likely than everyone I know that hasn't. Everyone is susceptible to it, unfortunately it hits the one's where the immune system is at a low. That's how the viral sneaks through. At the time I was taking heavy painkillers for a back issue I had. That on top of my extremely stressful work meant (according to my consultants) that my immune system was so low it couldn't cope with the viral attacking me.

    This is why under 5's and over 55's are most at risk. Immune systems are either not developed or are slowing down in later years.

    My advice would be NOT to worry about getting VM again. Concentrate on getting over this horrendous disease and getting back to a normal life. This will more than likely take time especially with the fatigue which is a classic example. You will notice from my above post that the craziness of training for a London Marathon and everything I am doing for the Trust is actually helping my fatigue levels through better mental and body fitness.

    Keep eating healthy and try and be active mentally and physically too. I know first hand how much of an effort it can be to be active when you are totally fatigued. However, your body knows when to rest and mine tells me now. I recognise the signs and I rest, do nothing. In October last year I couldn't climb 3 flights of stairs. Now I am running nearly 40 miles a week. An unbelievable turnaround but one that has been and still is very hard work.

    I had to learn a word that I have never ever been able to take note of....PATIENCE. I'm terribly inpatient but so many people have drilled in to me that this will take time. Some a lot longer than others. Please tell your daughter to be patient, being hit by an express train will take the body a long time to recover. Continue what she's doing and watch how gradually she will get better and better.

    Please let me know on how she's getting on. I genuinely care. I hope this helps and if you need to ask me anything at all please just shout out and I promise it won't take me as long to get back to you next time.

    Very best wishes. Dave X

  • I just wanted to say thank you so much for your post. I am new here and got VM 7 months ago and hearing your positivity is refreshing

  • Hi. Thank you so much for your message and for your kind words. Sorry for the delay in getting back to you, I have been without my lap top for over a week after a faulty charger but now have it back.

    I really do hope you are well on the road to recovery. VM is so widely misunderstood and it is important we are there for each other. I have written some responses on other posts recently too but if there is anything at all you want to ask me or share then please do.

    Take care and hope to catch up soon.

    Dave

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