Although I mainly write about my photography on here, the last few weeks have been some I'll never forget and it has nothing to do with cameras.
On Monday, 23rd March, I was sitting at my desk worrying. Worrying about a series of symptoms that had steadily become worse since the previous Thursday. They were the kind of symptoms that would surely make you sound mad if you told a doctor about them. I was dealing with a numb tongue, and pins and needles in my toes along with the addition of pins and needles in my finger tips that morning. I had Googled it - of course I had - and had multiple sclerosis staring back at me. I decided to call the doctor and was squeezed into an appointment that afternoon.
The doctor was sympathetic and did basic observations before asking about my lifestyle - I don't smoke, I drink little, and I'm not a particularly stressed person. She did a series of strength tests with me to see if I had any weakness. I didn't. Finally she took some blood to do a sweep of tests that would cover a whole range of areas - thyroid, cholesterol, sugars. I was relieved it wasn't just me and she was concerned enough to have it checked out. I made an appointment for a week later and tried to forget about it.
Tuesday, 24th March 2015
Like any other day, my son woke up around 6am and I headed to the bathroom before going to get him out of his cot. This time, as I washed my hands, I glanced into the mirror to notice only half my face making any movement. Jumping back into the bedroom in a panic, I told my wife who could see that half my face had drooped on one side and was making no movement. A drooped face says one thing; stroke. She called NHS24 who spoke her through various tests whilst sending an ambulance and I sat with our boy on the sofa like normal trying to stay calm for him. When the paramedics arrived they did more tests before we were rushed across the City to Edinburgh Royal Infirmary with a suspected stroke. There I was assessed and taken for a CT scan before waiting for a while for the scan results to come back. They were fine and I was diagnosed as having a transient ischaemic attack - a mini-stroke.
An hour later and we were making our way to another hospital across the city. There I saw a stroke specialist who began a series of tests on me to try and pin-point the effects this had had on me. Aside from a drooped face on one side, I had lost my ankle jerks and was wobbly on my feet but I still had strength. He then asked me an important question, "what do you think when we talk about stroke?" It was a big question for me; until this point I had gone from the initial shock and then from pillar to post being tested, and suddenly a doctor was asking me how I felt about It. Two thoughts rushed into my mind "how is this going to affect our life?" and "why, at 34, am I dealing with a stroke?" I went with the latter. "That's the same question I have," he replied. I didn't expect to hear that. "I don't think we're dealing with a stroke here". He sent me for an MRI and an ultrasound of the arteries in my neck. All these came back clear and it was arranged that I would return the next day to the neurology department for further investigation.
It was good to get clear results back from the various tests that had been done. "Unremarkable" and "all fine" were the words of the day, but for me this just came back to the same question - what is it then? Is this something beyond the doctors' knowledge and most definitely outwith my control?
Wednesday, 25th March 2015
It was early, around 2am, and something was bothering me. The paralysis down the right side of my face affected everything, including closing my eye to sleep. I tried to close it by holding the lid shut but I could still see the street lights pouring in from outside our window. That didn't make sense. The only answer was that my left eye was open and that meant one thing: the left side of my face was now paralysed too. I woke up my wife who asked me to smile...nothing. Raise your eyebrows...nothing. I tried to remain calm this time as she called NHS24 again. "Make your way to A&E" - so we did.
A long wait in A&E followed before a neurologist, who I was meant to meet later that day, came to meet me. He carried out the tests on my arms and legs that I had become familiar with now. I walked precariously across the hospital floor, before he asked me to stand with my feet together and close my eyes...I nearly fell on him. He sat me down again and began to talk about what was wrong with me. After two terrifying days I finally had a name for what was plaguing me: Guillain-Barre Syndrome. I was shocked that I had never heard of the condition and yet as he spoke I was aware this was going to become a big part of my life.
The best way to describe Guillain-Barre Syndrome is as friendly fire from your immune system on your periphery nervous system. It's useful to think about your central nervous system as the mains of a house, and your arms, legs, respiratory system are all the appliances. My immune system had launched an attack on the cabling between them and was shutting them down. It can be treated but it is all about grabbing your immune system's attention and making it realise it is making a big mistake. Treatment is a five day course of IVIg (Intravenous immunoglobulin) to boost the immune system and make it realise the fundamental error.
But the doctor warned me that it wasn't that simple. I was going to get worse first - IVIg boosts your immune system to help it notice the error but you still need to wait on it realising this, plus you're boosting the thing that is out to get you. I could lose the power to my legs and arms which were already showing signs of being affected. I could lose the power to breathe and swallow on my own. He warned that my mood would dip at some point and I would lose the will to fight it. I would then reach a plateau where nothing would change - I wasn't getting better but I wasn't getting worse. Then, eventually, at last, came the recovery.
With this news I looked at my wife and our twenty month old son - they would need to fend for themselves for a considerable amount of time. We had been a parenting team since he was born and now it would just be my wife to carry on, while still worrying about me. I find solutions and solve problems; now I was the problem and I couldn't sort it. I was in a hospital bed in A&E, wobbly on my feet and paralysed in my face but by the end of the week I would likely be on a ventilator in intensive care. I felt so out of control.
Once a bed was available I was moved to Edinburgh's Western General hospital to the Division for Clinical Neurology. While I was transported by ambulance, my wife collected things from home and ran a few errands for me. It was the first time I had been away from my best friend since all this began. I sat in the back of the ambulance where a nice paramedic chatted to me about his son, but all I could think about was when I would see mine again.
Treatment began almost immediately and it took about two hours to complete the daily course. Each hour of each day became a countdown to when I had to sleep. Every day so far had brought an additional challenge to me each time I woke up and I already knew I was going to get worse - would it be my limbs, or my breathing failing today? Would anyone notice it was the latter in time? I stayed up late and had been awake for 22 hours by the time I did try to close my eyes. The less time I spent asleep, the fewer debilitating changes would take place - in my mind anyway. I woke up around 6am and the pins and needles had moved up my arms and legs but everything else was okay. I did the same the next night and the night after that as though I was somehow cheating the system.
When the Sunday arrived it was the last day of treatment and it was apparent that my immune system had realised its error. It was also our wedding anniversary and I spent a quiet day in my side room with my wife. My mood was low and there was nothing I could do to shake it. My body was tired in a way I have never felt before - everything was an effort and I didn't feel like trying. Aside from that, and despite the plateau, I still faced a long recovery and a large portion of that was going to be spent in hospital. I was done in, fed up and not equipped with the small talk other people needed from me.
The next day the consultants were back on the ward and I was reviewed to see how things were going. I was better than the day before in mood and I didn't appear to be getting any worse. I was told that they were happy with my progress so I could head home. This was music to my ears. I could spend my recovery with my family which was all I wanted.
I've been home for a few weeks and life is definitely different now - I have to ask for my wife's help a lot more, especially when walking. I tire very quickly. I struggle to see for a lot of the day because of the gel used on my eyes (I can't blink) and that brings about more dependence on my wife. Even this post about my condition, which would usually take a couple of hours, has taken a couple of weeks to complete. Eating and drinking has changed a lot too - I've had to rethink everything and the straw has become my best friend with all drinks. Each night my eyes are taped shut to allow me some respite. Talking is difficult and people struggle to understand me which is often hidden by text, email, and blog posts. Despite all that, I am very thankful - an early diagnosis and the particular subset of Guillain-Barre Syndrome that I have means treatment started early and the condition was attacking my face first instead of my limbs as you would expect. I will also get better, albeit slowly. There are people fighting all kind of conditions every day, which won't get better. If this has made me realise one thing it's that you need to listen to your body when it's trying to tell you something. It was in the 1999 song "Everybody's Free (To Wear Sunscreen)" by Baz Luhrmann that I found the appropriate lines, "the real troubles in your life are apt to be things that never crossed your worried mind. The kind that blindside you at 4pm on some idle Tuesday." In my recent experience, this is definitely true.