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VIRAL MENINGITIS - A COUPLE'S STORY - DAVE & PAMELA PART 2

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Meningitis does not just leave the person who is struck down with the disease with after-effects, as we know only too well at the Meningitis Trust, meningitis affects families too. Here Pamela Hancock describes how her life was changed after her partner had viral meningitis.

Pamela’s story

So many people think that Viral Meningitis is like a cold, with rest you will recover in two weeks and life will get back to normal and all will be well. That could not be further from the truth and I for one would like to demystify the devastating effects this awful disease has on, not only the individual suffering, but the family and friends who have to watch the life altering affects this has on the person that you love.

The day our lives changed forever was Thursday February 9th 2012. It was around 5.00am and I had been up with our youngest daughter who had been suffering from a horrible cold and was feverish and unable to sleep. My partner came down and complained of a severe headache. However this did not seem like a normal headache as he seemed in such pain and his eyes were scrunched even though the room was only dimly lit. I told him that I was going to book an appointment with our doctor as I was so worried about our daughter and that I would book an appointment for him too. He refused insisting that after taking a couple of painkillers he would be fine. I didn’t argue at first, a person knows their own body and I know he had suffered with migraines as a child and therefore had a much better idea than myself about how to recover from them.

In the following hours before our doctors surgery opened my partner got dramatically worse. He was being sick but the pain was so intense in his head and neck that he had to stop himself being sick. He was complaining that his eyes hurt, his neck was stiff and that his whole body ached. So unlike him, I had never known him to even suffer a cold, let alone be in so much pain so I knew this was not a migraine. I sent him back to bed to rest and took our daughter to the doctors as he still refused to come. In a twist of fate we had checked our daughter for signs and symptoms of meningitis as she was so lethargic and very unlike herself.

Help from the GP

During the appointment with our doctor our daughter was examined and I was reassured that she did have a viral infection but she did not have anything severe and that I was to keep a close eye on her in case she worsened in any way. Being so concerned about my partner and having the symptoms of meningitis ringing in my ears I took the opportunity to explain to our doctor how my partner had been feeling and how worried I was. He said that he was also concerned with what I had explained and agreed that he would make a home visit on this occasion.

Within a very short time he arrived at our home as promised. Upon speaking with my partner and examining him he came downstairs and told me that we needed to get him to hospital as soon as we could. The doctor said that taking him myself would be much quicker rather than calling an ambulance. Our doctor suspected meningitis and acted incredibly quickly. He called the hospital ahead to ensure they would be expecting us and to ensure they knew the seriousness of his suspicions.

With no family in the local area my partner and I were pretty much on our own when it came to child care, however we were lucky that we lived in a fantastic area with great neighbours, which proved invaluable for me as I knew that I could leave our daughter, who was 5 days off her first birthday, with trusted neighbours that would look after her so I could concentrate on ensuring my partner was given the care that he needed.

We arrived at the hospital, at first with our daughter, and they were expecting us from our doctor’s call. If felt like an eternity before we were seen. A doctor arrived and performed a number of physical tests, take bloods and assess the situation and then left. A short while later a consultant arrived to speak with us and we hoped would provide a diagnosis. During this time I could see my partner deteriorating. His concentration was sporadic; he could hardly hold his head up as he was in such pain and all the lights had to be turned off as he was in such pain when they were on. The consultant could not confirm at this time what strain of meningitis he had, or indeed if that was the diagnosis, however his suspicions and concerns were grave enough to start my partner on a treatment of bacterial and antiviral drugs to prevent further deterioration in my partner’s state.

Juggling childcare and hospital visits

Thankfully one of our neighbours arrived to take our daughter as, not only was she unwell, the doctors did not want her to be exposed to my partner for any longer. I could now concentrate on my partner and what we were being told and contacting family about the situation. I was in a state of shock but practicality and logic kicked in. I contacted everyone I needed to, including my partners ex as he had two children that did not live with us. We decided until we knew exactly the situation we were not going to tell them the full extent of the situation, incredibly hard as we were due to have them for the half term.

My partner was found a bed on a ward and kept in isolation. I had to wear a gown and a mask and all I could do was keep talking about all our plans and how everything was going to be ok - far from what I actually felt and I could see such concern on the nurses faces. Finally at around 11.30pm I was asked to leave. I was also told that I would not be able to visit as the ward was on lock down due to the norovirus and I would have to be given updates via the telephone. I was devastated. I left for home, leaving the love of my life all alone on a ward not knowing what was wrong, when we were going to find out and knowing he must have been as terrified as I felt. I picked up our daughter and went home, alone terrified and with the internet to hand!

I knew I would not hear anything further that night, however I could not sleep so spent all night on the internet finding out as much as I could about meningitis. There was so much information about bacterial meningitis and how terrible this could be but very little about viral meningitis.

The following day we were still no closer to knowing what was wrong. More tests and finally a lumber puncture was to reveal that my partner did have meningitis, a severe case of viral meningitis and he would remain in hospital being treated. The worst was to come when they called me that evening to say they were unsure whether he would actually make it through the night. I didn’t know what to do. I was by now not alone, I had my partners two eldest children with me and our youngest daughter who was due to be one in four days time and my beloved partner was in hospital. I had to pretend that all was ok for their sake and hope that my partner had the inner strength to fight this and make it to the next day.

The next few days were a blur. We made the decision we had to tell the older children the situation, and I had to speak with our nearest and dearest. Fortunately my darling partner started to respond positively to the medication he was being given. He spent nine days in hospital being pumped full of anti-viral drugs and painkillers.

Coming home from hospital

He was in hospital for the entire time his eldest children were here and for his youngest daughters first birthday. We were allowed to visit eventually but it was not the same as him being at home.

After 9 days in hospital, he was finally allowed to come home and was discharged into the care of our GP. Our GP who had made a diagnosis that saved my partner’s life and whom without my partner certainly not be with us today. I will be eternally grateful for all he has done for us.

However this was just the beginning, 2012 was certainly the most traumatic year of our lives. So many people kept saying, oh viral meningitis he’ll be alright in a couple of weeks. That could not have been more wrong. His body had been physically ravaged by this terrible virus and changed him mentally and physically. Our doctor described it as the medical version of being hit by an express train and it would take time for the body to rebuild itself and to feel ‘normal’ again. How right he was.

Over the past 10 months my partner has suffered from an exhaustive list of after effects including, headaches, neck spasms, tinnitus, lethargy, degradation of eyesight, short term memory loss, sever fatigue, depression, anxiety and many more issues, each one debilitating, together devastating. I had lost the man I loved, he was now just a shell of himself and in constant pain. We were told that all of these would improve but it would take time, rest and a considerable change of lifestyle.

The lasting impact of viral meningitis

I could go on about how this has changed our lives forever, from the small things like being able to lift and assist in caring for our youngest daughter, to my partner feeling guilty of the strain he feels I have been under taking on sole responsibility of looking after our daughter, running the house and dealing with all our finances (which have been severely impacted too), to the anxiety and depression he feels about going back to work and how he will cope. Perhaps the worst impact has been his lack of self worth and the depression. Feeling constantly like he had failed me and his family in some way. A challenge we are still coming to terms with and one we will overcome. Every day I see a small piece of him starting to return. His coping mechanism is growing stronger, however there are good days and bad days. Physically he is getting stronger everyday, especially since he started working with the Meningitis Trust and he was awarded a golden bond to represent the Trust in the London 2013 Marathon. Being awarded the prestigious honour of being able to run for a cause so close to his heart was a major factor in giving my partner a great purpose which will no doubt aid his recovery and enable him to support and help others who have been affected by this terrible virus. What has been clear to us is that little is understood about viral meningitis, what causes this and the devastating affect it has on the individual and those around them.

He is still suffering and we will continue to take each day as it comes, we would like people to know and understand this disease is not just treated and you return back to ‘normal’ but in fact its a disease that has longevity that is not fully appreciated or understood. However we live this every day. One day we hope ‘normality’ will return, until then we continue to support each other and be thankful my partner is here to share our lives.

I for one will support my partner and the trust in their objectives to ensure everyone knows the signs and symptoms so we can save lives. It saved my partner.

Pamela

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5 Replies
vasco profile image
vasco

Incredible story! Fair play to you. You are absolutely right. Meningitis regardless the type is deadly and life changing. You are a rock to your partner and I give you credit for that. I had bacterial Meningitis two years ago which has rendered me disabled. I spent nine months in the hospital and while I was in the hospital my partner left me because she couldn't deal with it. I am no the same man she married. On discharge from hospital she handed me a gift -divorce. I admire your loyalty and steadfastness. Keep doing your good work

davehancock1 profile image
davehancock1

HI Vasco.

Thank you so much for your comments back to my partner Pamela. You really knocked me back with your story. I'm really sorry to hear that you didn't get the support that you deserved. I truly hope you are well and have the support there for you now. Pamela was and is an absolute rock for me. Without her support and that of the Meningitis Trust I don't even want to think of where I would be now. Pamela went through absolute hell and stayed so strong. I was the one being asked if I was ok constantly. Most people didn't think what Pamela was going through and to be honest is still going through. Thankfully the Meningitis Trust have given Pamela as much attention as they have me and have been an unbelievable help and inspiration.

Please take care and I genuinely hope you are well.

Very best wishes. Dave

kel80 profile image
kel80

Hi xxx same sort of experience I had ... Left myself feeling ill for days not wanting to upset kids routines etc .... Words just can't describe how vm has ruined my life .. Socially physically mentally ... My memory is awful .. My concentration ... My pains in neck back f head lower spine ... But still you get doe people say oh why you still feeling rough you didn't have the serious one ... I was diagnosed in April .. In hospital two weeks which was a blur ... Come home in a terrible state took a long time to be able to be mobile ... First week in may ... taken back into hospital ... Two days only this time ... Again recovery again ... Then September back to work six days .... Back into hospital diagnosed again with vm ... Immune system s so low I catch anything ... Really I am just waffling on and not getting to my point ... But what I am trying to say is ... Vm just doesn't get classed as serious ... Sometimes it makes you feel like a wimp .. Maybe imaging symptoms .... It's just awful when you feel so low so I'll and not many understand xx

davehancock1 profile image
davehancock1 in reply tokel80

Hi Kel80. Firstly please accept my apologies for the delay in responding to you. For the past few weeks I have had my head full on preparing for my first ever Meningitis Trust Charity Evening which took place last Thursday. So I'm really sorry for the delay.

Can I please point you to two responses I have just posted on the sister story to this one VIRAL MENINGITIS - A COUPLE'S STORY - DAVE & PAMELA PART 1 (MY STORY)

This tells a lot of what others have experienced and I've shared more of mine too.

I completely and utterly sympathise with you. Only last week someone said to me "but you didn't have the serious one did you"? I could have exploded. So little people understand what VM sufferers go through. I ruined my life. Took me so deep into depression I never thought i was going to climb out it. I thought things I really didn't want to be thinking. However, my life changed when I discovered the meningitis trust and what I could do for them which in turn would help me, my family and others out there.

I have been told never to go back to my previous line of work again. In fact as soon as someone mentions it to me I freeze. It terrifies me thinking of the pressures that I would be under and would this cause me to contract meningitis again. I know the stresses and strains of work along with the painkillers I was on for my back at the time caused my immune system to be at an all time low. Hence the meningitis. I cannot and will not go back to putting myself in a position like that again. This does not however mean I will never get it again. Anyone can but I need to ensure my lifestyle helps me prevent it.

There are times when you feel so low and useless. I still do and you do start to think is there really something wrong with me. I often have compared to myself as no more intelligent or as capable as a small child. Fortunately I get a very swift kick up the backside to say I'm not, that I have been through a severe trauma and my body needs time to get over it. Only people who understand can give you this advice and direction. So many people out there have no idea about VM. it is incredibly frustrating hence why recently the meningitis trust did a big push on awareness of the disease. With people reading my story and Pamela's they have started to realise exactly what we went through. Only then do they say "I never knew how poorly you were'

PLEASE PLEASE PLEASE don't feel like a wimp. You are far from it. You are brave and like the rest of us going to tackle this and beat it. We may still have certain after effects for years to come but at least people will understand us and people will learn to help us get through and get better. I am here at anytime so if you want to chat, ask questions or need any help then please just let me know.

Please stay in touch, take care and very best wishes.

Dave X

Carryon895 profile image
Carryon895

Hi. Thanks for sharing your story.

My partner contracted 6 months ago and his health is up and down. He feels depressed and just doesn't feel good about life, not to mention the mood swings that he has when I say something and he thinks Im reacting. Now our relationship is on the rocks because he thinks Im not listening when Im doing the best I can to be there for him, he tells me he needs space and I give it to him, sometimes when I tell him that he has got it wrong its because he has got it wrong but its hard for him to admit that, before he got sick he has always got everything in control and I know that he has but at the moment sometimes he just gets it wrong most the time now, I just dont know what to do, everything I do seems wrong.

He has decided to end our relationship and broke off our engagement because he thinks it wont work with so much stuff going on and he thinks Im stressing him out and I agreed to it and just said if he needs to heal then I respect his decision. I am still love with my fiance and he said he is still inlove with me aswell but what do I do, he is confused and I am confused now too because I want to do whats right for him and I want to do whats right for our love too, that this is not just his battle its ours both. We still live together and he wants us to be friends but it hurts me to see him everyday and just carry on like nothing happened.

Thanks

Haze

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