Last year, writer Rick Haynes’ life took a major turn for the worse when he was diagnosed with a debilitating illness. He reflects frankly on how his sense of humour and his wife’s loving care helped to alleviate the often intense pain he was in.
I found it hard to remove my sleepy body from my bed. It had been the same yesterday. In fact, it had been the same every day since the 21st of May 2018. Seronegative rheumatoid arthritis – a protein produced by the immune system can attack healthy tissue – was a bastard of a disease and one I’d never heard of before. I prayed daily that it would vanish as quickly as it had started.
But maybe I should start at the beginning.
On the 20th May 2018, I closed my eyes and entered the land of dreams. I was on holiday; fit, active. My brain was alive with words for my next book. Seven hours later, I awoke with sharp, stabbing pains in almost all of my joints. Only my toes and ankles were spared. I pushed myself to the edge of the bed and tried to stand up, only I couldn’t. Arrows of agony flew down from my shoulders and lodged in my elbows. My knees and hips screamed at me not to walk to the loo. The need to pass water won the battle, but the effort of walking ten paces brought tears to my eyes. Little did I know that it would be the first of many such struggles to come. I sat on the toilet seat, my head in my hands, and wondered what the hell had happened.
It was a question that I would ask myself many times over the coming weeks. Had I picked up a nasty virus? Was it because I’d used a petrol strimmer the day before? Surely it couldn’t be the half bottle of local wine I’d drunk the previous night?
Enjoying myself in the warmth of Crete – the daily swimming, the very fresh food, the great social life with so many friends – was normally so therapeutic. Not this time. I visited a local physio about my shoulders as the pain was worse there than anywhere else. His examination and treatment helped a little at first, but ultimately delayed the inevitable. Within a day or so, I was climbing walls once more.
Four weeks later, I arrived back home and immediately called my doctors. I was delighted to be able to book an appointment online at the rheumatology department of St Richard’s Hospital, Chichester.
If something sounds too good to be true, it usually is. As the hospital was sited just across the county border, I thought it wise to check if they’d have access to my medical records. The answer was no. Unfortunately, worse was to follow. There turned out not to be any appointments available in rheumatology on Saturdays and the chosen doctor retired years ago. I’d better not write down the words I screamed. Let me put it more politely:
What an utter cock-up.
Complaining seemed a good idea. The receptionist at St Richard’s was silent while she checked my story. I’m sure I could hear the wheels inside her head turning slowly. I waited patiently with the phone against my ear. Eventually, she apologised for the third time and agreed to phone me back. It didn’t take her long. An appointment was duly made within two weeks to see a rheumatology specialist. I thanked her kindly for helping me, as clearly, it wasn’t her fault.
I wrote a letter to the head of St. Richard’s – you know, the ‘head honcho’ – about the failure of the online ‘choose-and-book’ system. I’ll give you one guess as to whether I received a response.
What is wrong with these arrogant people?
Time passed so slowly that it made a snail look like an Olympic sprinter. This gave me many hours to consider the best way to rise from a chair, the most comfortable sleeping position and of course the right way to stand still at the toilet bowl without wetting your pants. That proved to be a bit tricky when my body was shaking and my feeble brain was telling me to sit down.
Eventually, on the 17th July, I saw the rheumatology doctor at St Richards’, was sent to the x-ray department and then on to the ‘Dracula clinic’. Over less than a fortnight they took several armfuls of blood from my overworked veins. Maybe if I had fainted they would have understood my concerns, as I was certain that my left arm had gone all limp due to the amount of blood removed.
On the 9th August, I returned for the verdict. Being told that I had seronegative arthritis was akin to me telling an alien that he couldn’t leave a spaceship in a no-parking zone. I just hadn’t a clue what to do, as the old song goes from the band Sweet. Try singing the words in a high pitched voice and it makes more sense.
Keep reading for it only gets worse.
I was given a course of steroids. Five a day for four days, four tablets for four days. I had to carry a steroid card at all times just in case I needed any new medication that may cause problems with my life-saving tablets.
They were brilliant! On the morning of the second day, my joints moved smoothly like a well-oiled engine. My agony had disappeared, and, unbelievably, my old life was back. Celebrating with a glass of wine, my wife and I discussed our long and special holiday due the next month. I could fly, we could have a wonderful time and all would be well for the future.
The course of meds ended and I praised those little steroid tablets for such a magnificent job. But how stupid was I in daring to believe?
Like a tap being turned back on, a tsunami of pain surged through my body as if determined to eat me from the inside. That vile bastard was back, big-time, and my heart sunk into my stomach.
How? Why me?
My self-pity made me wince… but wait a minute, you try and imagine a scenario where virtually your whole body is afire and you have nothing to douse the flames. After one long night of broken sleep, I slowly pulled myself up and wept unashamedly in my wife’s arms. I’d had enough.
I returned to the hospital. While the specialist was so pleased that those tiny little white pills had worked their magic, she soon saw the look of despair on my face when I explained that my discomfort level was nearly off the scale again. I had travelled to the gates of hell, been rescued, yet had now returned to the world of torment.
Constant pain never leaves you during your waking hours and has no qualms about ambushing you in the night. It hates you but it demands your attention. Woe betide you try to ignore it. Pain eats away your confidence and your ability to think rationally. Think about the pit of misery and you’ll get my drift.
Anyone having to sign any legal papers whilst suffering like this, please take note.
Having waited many, many months for a shoulder operation, the last thing that I wanted was to receive an invitation to bed-dance in the operating theatre of my local hospital. Having had the same operation in my right shoulder some years ago, which went smoothly, and with the waiting list so long if I delayed, I couldn’t see a problem and reluctantly, I agreed.
What a fool I was.
The first operation was incision by keyhole surgery which meant a quick recovery, yet when I awoke and saw the massive padding around my shoulder this time, my heart missed a beat. I just about managed to ask a couple of questions coherently. The cut in my shoulder was four inches and the recovery time would be longer than before as this hadn’t been keyhole surgery.
Talk about putting undue pressure on yourself. I wanted to blame my befuddled brain for not asking the right questions at the right time. I put it down to the lack of sleep caused by my arthritic pain. Yet, even now, I wanted my wife and I to fly away to the land of blue seas and glorious skies. It was our dream and with so much planned, I stubbornly refused to accept the messages that my body was sending me every second of every day.
Usually, the easiest thing in the world is jumping into bed, wrapping the covers around you and falling into a blissful sleep. Once upon a time in a dream far away that was me, but not now. Before turning off the light I had to carefully arrange four pillows. Two were placed at an angle to support my neck and back. One was then placed under my left shoulder. The last one was laid out sideways under my knees.
You are probably thinking that I was either very fussy or bonkers. I plead not guilty to both charges, folks, so let me defend my actions.
It’s all to do with the pain. Reduce the risk of turning over and the chance of waking up reduces. But why the pillow under the knees, I hear you ask? Lying on my back kept my legs straight but, due to my nice metal knee locking if I did, I used a pillow.
Pass the oil can.
Getting out of bed was tricky from day one. Okay, I’m playing down the morning ritual as you’ll understand as you read on. Morning fingers were stiff and rigid as crab claws. With my knee, hip, back, neck, shoulder and hand joints all screaming like banshees, I always had to take a deep breath. Next, I slowly removed the bed covers and took another intake of breath. Urging my legs to obey my commands, I turned to my left and drew my feet up before swinging them over the side to touch the floor. Placing both hands on either side of my pelvis, I tried to make two fists before pushing down on the mattress. Like a balloon slowly rising on a current of hot air, I forced myself to ignore the torment. I gritted my teeth, and like a swaying leaf, finally stood up.
Euphoria was soon mixed with agony. My body trembled and my brain wandered into the unknown. Even my eyes were awash with tears from my efforts. Apart from the few weeks – pain-free – when I took steroid tables, I had been in constant pain since the 21st May 2018.
Was I feeling sorry for myself? After so many weeks, you bet I was.
Going out for a coffee, or anywhere that I have to sit down, was tricky if the seat had no cushions. What a liar I was. It was much worse than being a bit difficult. As soon as my bum took the weight my pelvis compressed and all I wanted to do was immediately stand up. I guessed the feeling was not dissimilar to sitting on a bed of nails, not that I’ve ever had the pleasure of that perversion.
Whatever turned you on was okay by me but I’ll pass any day of the week.
Some twelve days later, my wife and I visited our local supermarket – it was my first trip in the car since leaving hospital – but I had to walk somewhere and we both needed a coffee. Without hesitating too much, I lowered myself very slowly to the hard chair, winced, bit my lips and told myself not to be such a wimp. Unable to prevent a scream from escaping through my pursed lips sent many inquisitive eyes in my direction. I grimaced in return and tried to think of something else.
I know what you are thinking; I can hear you. ‘But what about your brain? You’re a writer; how can you cope with all the words inside your head waiting to be released from their incarceration?’
With great difficulty, people.
Constant pain is evil, really evil as it can creep up unnoticed and spread like the plague if left untreated. Unable to type properly, I believed that at least my old brain-box would see me through my troubles and drag me through the other side. It would be my crutch of hope and I held onto it like a drowning man in a sea of despair.
That was on a good day. Please don’t ask me what a bad day was like as I’d hate to swear at you.
With so much agony in most parts of my body, I was limping slowly into a dark realm of endless torture. It was crystal clear; my pain management was not working.
With so little help – the NHS waiting game was in control – I struggled to remember important matters like messages and hospital appointments, let alone everyday events. The saying ‘the world is my oyster’ was meaningless to me. My world was four small walls and they really were closing in.
Wallowing in self-pity? Maybe, I was. There were two things that I held on to. Retaining my sense of humour kept me sane but without my wife’s amazing care I’d have probably cut my wrists. Still, at least then I’d be in a hospital and they’d have to treat me, wouldn’t they?
Anyone got a sharp knife handy?