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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