Steve Hill, Ironman to wobbly jelly
On Saturday 11th of February I was admitted to hospital with bacterial meningococcal meningitis.
It all started on the previous Monday 6th of February when I woke up for work. My joints ached and my knees in particular, they were really hurting when I bent down or twisted. I phoned my boss and took time off work. A few days later I booked an appointment with my doctor as the symptoms were not getting better. I never made it to the appointment.
On Saturday, sometime during the afternoon, I had a really bad headache, so bad that I took 2 Paracetamol, and I never take tablets. These didn’t touch the headache and I went to bed about 5pm. I was shivering and the headache was terrible. When my wife, Sarah, came back from shopping, she came to the bedroom to check on me, I was so cold that I had a hot water bottle and even that would not warm me up. The pain was so bad that I could not sleep and was very restless. Sarah was so concerned that she phoned NHS direct.
The NHS direct nurse would not speak to Sarah and would only speak to me, I didn’t have the energy or inclination to speak to them, I was seriously ill. I was asked how bad the pain was from 1 to 10 and I replied 11. I got out of bed and went to the toilet, it was then that Sarah noticed the rash all over my body. She tried the pressure test and the rash was not blanching. The NHS direct nurse called the ambulance immediately and I got dressed.
When the ambulance arrived about 10 minutes later, I was able to walk to the ambulance and sit down on the bed. I remember them doing some tests while I begged for some strong painkillers, but could not have any until the doctors had seen me. That’s where my memory of events stops until my first memory on the 25th of February, some 2 and bit weeks later. My wife tells me that I woke up 2 days before, but I don’t remember although I have a few misty vague memories of her wiping my head with cold wet towels and putting my oxygen mask back on after I kept pulling it off.
My first real memory after waking up was Sarah and my sister-in-law Karen leaning over my hospital bed, accidentally I kissed my sister-in-law instead of my wife first. I had been taken off the ventilator and all the tubes had been removed. Funny enough it was the day Wales played England in the 6 nations and my English father in law had come down to visit me for the game. Some of my family live far away and they spent a lot of time by my hospital bed. I was sort of slumped, sat-up in bed and my father-in law was holding my hand, not only to show support and love, but to stop me pulling the catheter out. I was a confused and irritable wreck who could hardly keep his eyes open. I couldn’t concentrate on the game as my mind kept wandering back to some of the nightmares, dreams or hallucinations that I had during my coma. I was never one for remembering dreams before my illness, but these were so vivid and I can still recall them now. They were the most frightening, un-nerving recollections I have during my coma and involved all my family who visited, my ears must have still been working.
I stayed on the Intensive Care Ward for 3 days after waking. During that time I was confined to bed for the first day or so, not that I had the strength to get out of bed. On day 2 though, I was allowed to get out of bed and sit in a chair for a short while before I returned to bed. A member of the occupational health team came and visited me with a Zimmer frame in hand and I was invited to stand up to use it, That’s where I found that I had no practical use of my legs, I could hardly stand yet alone walk, I was lowered carefully back onto the chair as the last thing I wanted was to be back laying down. I was advised to exercise my legs by picking them up off the floor and holding them there for a few seconds. God it felt good to be upright!.
I looked forward to visiting times and would be clock watching constantly, I couldn’t wait to see my visitors, but after a while with them, I just wished them to leave, I felt absolutely drained. On a few occasions I actually fell asleep while they were there. When they were gone, I wished them back again.
I remember my last day in ITU due to the embarrassment I suffered when I desperately needed to go to the toilet, The toilet facilities believe it or not were a good 70 yards up a public corridor, I tried my best to hold it in but failed miserably, leaving a trail all the way up the corridor. The 2 nurses that held onto me and the Zimmer spent the next 30 minutes sitting me on the toilet and washing me down. Later that evening a nurse came over to me and said they were transferring me to a normal ward as the ITU was full and they needed the bed. I could hardly walk so a porter sat me in a wheelchair and I was transported to Ward 5, a chest ward.
I arrived on the ward about 8pm and was placed in between two gentlemen who were on oxygen machines that whirred and made some strange noises, I could see and hear that they were both struggling to get breath, it was then that I’d remembered that I had given up smoking in January and vowed to myself that I would never start again.
The following morning I awoke and the nurse was there with my medication, 2 paracetemol and a small tablet, I asked what it was for and she replied that “it’s to calm you down and help you relax” I politely refused it as I didn’t want to be drugged up in bed, I wanted to get stronger and get out of the hospital. I had a Zimmer at the bottom of the bed and was told to try to use it as much as possible, I had a water infection from the catheter, so was going back and fore to the toilet very frequently, I had to pass the nursing station every time where the doctors were sitting.
My last day in hospital started with a doctor telling me that they were still trying to transfer me to my local hospital, but due to an outbreak of a superbug, beds were very scarce. I was asked a few questions by the doctor to see if I was still corpus mentis, such as “what year is it?” and “who’s the prime minister”, I got the year wrong, but I still passed apparently. For the next few hours I wandered about ward, back and fore the toilet, waiting for my wife Sarah to turn up and help me shower, I hadn’t had one for nearly 3 weeks and the nurses were too busy. Sarah had sought permission and had it granted, she was allowed to help me shower and was coming at 3.30pm.
I was sat on the edge of my bed at 2pm when the occupational health lady turned up to ask about my needs back home, such as grab rails etc., before we could finish the questionnaire, the doctor asked politely if she could butt in and calmly said the magical words” Steven, we’re going to send you home”. I broke out in floods of tears and thanked her profusely, I couldn’t wait to get home to see my family and to get some peace. She said “ As you are only having paracetemol and I’ve seen you actively moving about, there’s no need to be here”. I grabbed my phone and called Sarah, “don’t bother bringing the big towel in with you, I’m coming home”.
While I waited for Sarah to turn up, I was taken by wheelchair to the physiotherapy section where they checked I could get off a chair myself and could go up and down stairs. I passed, well, I made sure I wasn’t going to fail. While this was going on, Sarah was with the doctor telling her that I couldn’t come home, I wasn’t ready and she hadn’t done the shopping. I joined the meeting to alley some of her fears and to make sure the doctor was not going to change her mind.
Now yes, it was difficult at first, without the modifications to the house, but we got through it, I had baths instead of showers and Sarah along with my daughter Nicola did all the cooking and looking after me. I didn’t have to raise a finger, they wouldn’t let me anyway. You would think that nothing good could come from having Meningitis, but me catching it has brought my family closer together. The support both my family and friends have given me and the rest of my family has been fantastic. The way I see it, is that I slept through the worse part with all the strain and stress falling on everyone else while I was in a coma.
Back to the night I was admitted,
Sarah was told by the doctors shortly after we arrived in the hospital to call our children and tell them that Daddy was very poorly and they should come and see me at the hospital straight away. It was the early hours of the morning, I can’t imagine what Sarah was going through at that time or what the result of that phonecall did to our children. My wife hardly never left my side and helped the hospital staff while I thrashed about on the bed as well as going back and forth to check that the kids were okay while they were waiting for the doctor to speak to them.
Sarah also told me of the time her and my brother was holding me down while the doctors tried to pull the ventilator pipes out. While in a coma, I contracted Pneumonia and it took the doctors 3 attempts to get me off the ventilator but my stats kept dropping each time. If the next time hadn’t been successful, I would have had a Trachioscapy.
Now I have been out of hospital for just over 3 months and am still finding the going tough, the feeling in my fingers is still numb and the dizziness I feel is getting worse and constant. I can’t remember feeling dizzy when I first came out, although at that time, my brain felt like it was swimming in a sea of treacle, as if constantly inebriated. I have an attention span of a gnat ( That’s why this is taking so long ) and my memory is shot to pieces ( ask my Wife ). I have tingling in all my extremities and have trouble picking things up because my thumbs refuse to work. The worse symptom though is the constant feeling of exhaustion, which never seems to go away, I try to push myself off the setee and that’s me knackered for the day. Just as well I have to sit on the edge for a while to let the dizziness subside!!
I sometimes do get frustrated that little things we all take for granted, are now difficult, putting pants on, picking up a teaspoons etc., but one thing I refuse to loose is my sense of humour. I can always forget about dropping spoons etc.!!!
The Meningitis trust have been fantastic and my family and friends immense, just a few questions god, will the dizziness subside and will I ever get my strength back ? ?