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.
Pain Is My Nemesis
I found it hard to remove my sleepy body from my bed. It was 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 which 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 started.
But maybe I should start at the beginning.
On the 20th of May 2018, I closed my eyes and entered the land of dreams. I was on holiday, fit, active and my brain was alive with words for my next book. Seven hours later, I awoke in agony as sharp stabbing pains were coming from virtually all of my joints. Only my toes and ankles had been spared. Having no idea why my body hurt so much I pushed myself to the edge of the bed and stood up, only I couldn’t. Arrows of pain flew down from my shoulders and lodged in my elbows. My knees and hips joined in. They screamed for me to desist from my proposed walk to the loo. The urge to pass water won the battle though but the effort in walking ten paces to the toilet 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 everyday swimming, the very fresh food, the great social life with so many friends - was normally so therapeutic but 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 but the slight reduction in pain merely 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. After an initial appraisal, referral to a specialist quickly followed. Using the choose and book method would be the quickest way forward. My caring doctor completed everything online and chose a hospital, St. Richards. It was farther away than my local home of caring but their waiting time was so much shorter. I was delighted that I would be seen one week later by a doctor in the rheumatology department.
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. Would they have access to my medical records? Prudent? I was, for the answer was no. Unfortunately, worse was to follow. There were no appointments in Rheumatology on a Saturday and the chosen doctor retired years ago. So much for choose and book. My doctor was horrified. I’d rather not write down the words that screamed from my lips but let me just say that I said, nicely, what my doctor thought.
What an utter cock-up.
Complaining seemed a good idea and when the receptionist at St. Richards checked my story, she was silent for quite some while. I’m sure I could hear the wheels inside her head turning slowly. Patiently, I waited 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 - sent via recorded delivery - to the head of St. Richards, you know - the head honcho - about the failure of the 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 like all the snails I had ever seen. 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 of July, I saw the Rheumatology doctor at St. Richards, was sent to the x-ray department and then on to the Dracula clinic. Taking copious amounts of blood was high on the agenda which meant several armfuls would be taken from my overworked veins in less than a fortnight. Did these carers have no compassion? Maybe if I had fainted they would understand my concerns as I was certain that my left arm had gone all limp due to the amount of blood removed. It was a stupid thought but try telling that to my bruised and punctured appendage.
On the 9th of August, I returned to receive the verdict. Informing me 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 etc. 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. Exaggeration, I know, but to me, 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 me 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 tablets ended and I praised those little steroid tablets on 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 with stabbing pains and you have nothing to douse the flames. After one long night of broken sleep due to my closest and vilest villain thrusting needles into me, I slowly pulled myself up and wept unashamedly in my wife’s arms. I’d had enough.
I returned to the hospital. The specialist was so pleased that those tiny little white pills had worked their magic but 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 agony, been rescued, yet had now returned to the world of torment.
Constant pain is like a vicious overdraft you can barely control. It never leaves you during your waking hours and has no qualms about emerging several times in the night. It has no feelings for you but it demands attention and woe betide you try to ignore it. Insidiously, 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 so I put it down to the lack of sleep caused by my arthritic pain. Yet, even now, I wanted my wife and me 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.
My enthusiasm for flying was still burning inside me but it wouldn’t be long before pragmatism shook me out of my daydreams.
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 was lowered. But why the pillow under the knees, I hear you say? 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 a bit 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 as 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 of 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.
Alas, my crutch soon vanished as my brain was as woolly as a mammoth.
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?
Apparently, I could have a steroid injection in my bum, so my specialist said. Great! When?
‘Well, you will have to wait until your shoulder is healed as steroids can interfere in the healing process. About two weeks to four weeks should be okay.’
Another wait, yet maybe I had to take some of the blame. If I’d have delayed my shoulder operation then perhaps I’d be sitting more comfortably after the steroid injection. The downside was the long orthopaedic waiting times if I’d cancelled and rebooked.
Heads you win or you lose. It was a difficult decision either way.
But I was bullish. I can put up with that, I said to myself. It’s bound to be only a fortnight. But, as usual, the rug was quickly pulled from under my feet. The rheumatology specialist at St. Richards hospital told me that I would now be treated at another hospital, Bognor, some twenty five minutes further away. That would mean a round trip of about two hours.
Damn! Blast! Poo!
I’m trying hard to be polite here folks.
I had to go to this hospital to be educated in the taking of Methotrexate. What? I’m a grown male with a brain, well my wife’s is better than mine and she wouldn’t miss anything. As before, I must be patient and wait for another appointment.
Has the world gone mad?
But what could I do? None too patiently, I waited and waited.
Eventually, I’d had enough. I phoned my new, yet previously unknown hospital. Being transferred to the correct extension, I waited for an answer. And like before, I waited and waited. Eventually, a recorded message commenced. I was to leave my details. If you are like me, you are very cynical about leaving messages on some alien answering service due to one simple fact. Unfortunately, you rarely receive a reply. I tried later and again later still. In desperation, I left a message with all my details. It won’t tax your grey matter in guessing what came next. Zilch, nothing. It was avoidable yet predictable. The term, déjà vu, came to mind.
Climbing walls, I phoned my doctors. They were amazing. My doctor agreed that he would give me the steroid injection but one piece in the jigsaw was missing. He didn’t have the correct dosage and only the hospital had the details. To be fair, my doctor hadn’t received all the information about my shoulder operation either. I guessed he wouldn’t be able to stick a needle in me anyway as apparently the correct timescale for a steroid injection was five or six weeks after surgery.
Two weeks? Three weeks? Six weeks for an injection? Who knew? There seemed to be some confusion folks.
I was firmly stuck in a minefield of uncertainty with unexploded bombs all around me.
Back to square one then. I phoned the hospital once more and again left a message. I’m still waiting.
A dog would have received more attention than I. Does anyone know whether vets can carry out injections on humans?
A lull ensued as I awaited my next appointment or telephone call. That was broken when I visited the physiotherapy department of Q.A. - my local hospital - on Friday the 24th of August. It was the follow up after my shoulder surgery. If you want to hear about caring, I urge you to read on. After my initial examination - the wound had healed nicely - a number of seemingly endless questions were asked of me. Later in our discussion, I understood why.
To summarise, I was told by doing all the right exercises at home, my shoulder was moving well and my recovery time was on track. However, when the lovely, Suzanne, found out that I was still struggling with so many stiff joints some three to four hours after getting out of bed, her eyebrows rose higher than I would have thought possible. That’s not right, she told me, and every part of my aching bones agreed with her judgement. The lovely lass answered all my questions, gave me a number of options but suggested that I change hospitals. The Q.A. rheumatology department offered an automatic six monthly check up and, wait for it, an in-house hydrotherapy pool. ‘That would really help you’, Suzanne said. It was the first time I’d smiled in days. I would need another physiotherapy session in a few weeks, which, hopefully, would be my last as my shoulder should be close to full movement.
As I love swimming I hoped it wouldn’t be too long before I could luxuriate in that muscle relaxing hydrotherapy pool.
Remembering her words on the way home filled me with hope, but negative thoughts whirled around and around inside my head. Seronegative Rheumatoid Arthritis was an unknown demon burning me from the inside. It felt like I was being consumed in the fires of hell, and against my best attempts to fight the evil bastard, I was losing.
It was time to break the inertia.
Due to so much discomfort, I rang for an urgent appointment with my doctor on Tuesday the 28th of August. On arrival, I was soon whisked into the inner sanctum. He asked several questions - quite a lot actually - and we jointly discussed a plan for pain management. Without exaggeration, my doctor went through all the options which made it easier for me to choose the one that suited me best. I was glad that he readily agreed but with his next words, I thanked myself for choosing such a great practice. Just like my physiotherapist, he thought that I should change hospitals. However, he would need a written request from me giving him the authority to contact my local hospital and thus transfer my case file to the infirmary so much closer to my home. I readily agreed, and, as quick as a flash, I produced a prepared letter asking the practice to do just that.
As the saying goes, great minds do think alike. How modest of me.
On returning home I read all the instructions for my new medication and swallowed the first two tablets. Now the waiting game began. Would they reduce the pain? Would I be able to walk up the stairs without my knee joints moaning? And when I started typing again in the morning, would I be able to use more than one finger? More importantly, would I be able to journey into the land of dreams once more without being woken up every two to three hours? That last question was really important as one night I awoke at the point of me trying to save an alien world from destruction.
Being an author, that’s not on folks.
It was the afternoon of Thursday the 30th of August when the telephone rang. Surprisingly, it was my doctor. He’d had no response to his letter about the failure of the choose and book idea - just like me - but he was determined to help. From completing the insurance claim form - we had to cancel our carefully planned holiday – and to confirm the transfer of my medical papers to my local hospital was underway, he did everything he could to get me the treatment that I desperately needed, and, as quickly as possible. Advising me to take the appointment from the far away hospital if it arrived first, simply confirmed my decision to do just that. However, with their abject failure to communicate so far, we both doubted that I’d receive an invitation to visit. I told him I’d have more chance meeting a member of the royal family. He didn’t disagree.
His actions once more made me feel so lucky; my doctors were more precious than gold.
To all those in the Horndean surgery, I say, take a bow. You really deserve it.
Alas, it was back to the waiting game once more. Remembering the old saying about twiddling your fingers came into my head. Unfortunately, that’s what happens when boredom is your constant companion. My view of two windows; one at the front of the house; the other to the rear, was akin to being in a prison cell. But it was worse than that, as I was trapped inside but had no idea how long my sentence was. Is that fair? Is it cruel?
Yes, I did go out but any trip was fraught with problems. I couldn’t drive, and bouncing over the many potholes when my beloved took me out, sent a nagging pain into my recently operated shoulder joint. And as I’ve previously said, sitting on any hard surface in a café brought tears to my eyes. Believe me, I did grin and bear it, for any journey to anywhere was far better than the tedium of sitting within the same four walls hour after endless hour.
Going back to my fingers, I can assure you that twiddling was impossible, typing painful and making a fist unbearable. If only I could have seen a light at the end of the gloomy tunnel of misery. Unfortunately, wishing was unlikely to solve the tardiness of the NHS.
Three weeks after my shoulder operation and I still couldn’t drive. I lived in hope, thinking I might be able to take the wheel soon. At least my better half was prepared to chauffeur me anywhere. With so much patience, she was the best carer ever. I’m so glad she never read this; she may have wanted a reward. LOL. Okay, I was joking. In reality, she could have whatever she wants.
The weeks dragged on and on. Like the worst advertisement on the goggle-box, my view from the lounge remained the same; I’d seen it a thousand times. But at least I’d seen a number of baby great tits flying in and out of the large buddleia across the track. Insects beware, the hungry mob were on the rampage. Better still, on Saturday the 1st of September 2018, I sat behind the wheel of my car and drove away. And before you say anything, no I did not hit anyone, and no, my brain was functioning as I had only been taking paracetamol tablets.
One small step for me then, but I longed for the giant leap to come soon.
Anyone got a spare walking stick?
Waking up with a clear head proved to me just how spiteful pain relieving tablets can affect you. I fully understood why they could slowly infect the body and become addictive.
It was Monday the 3rd of September and I returned to my doctors as they had all the necessary medical documents ready. My wife drove me to the surgery, and, after forking out the dosh, I had most of the relevant paperwork to claim back my costs from the insurance company. Only the no-show letter from my airline was missing. Fingers were definitely crossed, as from other people’s experience, no-show letters were hard to extract from their chosen carrier.
I’d forgotten that my super-quack had used the choose and book option once more - he had more faith than me - as he’d managed to get me an appointment for the 2nd of October at the Q.A. What a thoroughly decent bloke.
I still crossed my toes as well as the digits on both hands though. Booking a date and time at the hospital was always open to the worst possible outcome. Cancellation!
By the way, if anyone has inside knowledge of dealing with insurance companies and winning, do let me know for future reference. Even with everything we sent, we were still heavily out of pocket.
It was Tuesday the 4th of September and after trying to chat to an airline robot - we’d tried zillions of times over the last week - my wife finally managed to chat online with a human being. An email was to arrive within seven days with the confirmation of the no-show and, wait for it, we would receive a refund for the airport taxes. My wife felt faint as she read out the good news. But, as usual, there was a sting in the tale. That would cover the outbound flight but not the return. I guessed it was feasible that we could fly out, and subsequently return with another airline but in my condition travelling anywhere was a nightmare. I tried to imagine sitting on a plane for four hours. No way. I doubt the plane would be the other side of Paris before I’d be demanding a touchdown at the nearest airport.
Anyone know how much you’re fined for diverting an Airbus?
Anyway, we would still still need to receive a no-show advice for the return flight and our insurers insisted we only had sixty days to complete all the formalities on the claim form. That was cutting it very tight, maybe too tight.
Yet another phone call then.
On Tuesday the 11th of September I returned to my caring NHS physio. All was well with my left shoulder movement. Great! Now I could up my exercises with a few light weights and find a swimming pool. However, I had to shake my head when she asked whether my pain was now manageable. Taking codeine pills had worked but the cost was high, even when taking the lowest dosage. Imagine looking through tinted glasses in a fog and trying to read a newspaper. I dare you to have a go. The little white tablets leave you in a state of, forget everything, and a desire to sit down and do, well, absolutely nothing of course. Everything, and I do mean every action, was an effort. Wanting to take back control of my body, I reluctantly cut back on the codeine as my brain was mine and I wasn’t prepared to share it any longer.
Yet, those little pills had the last laugh as severe constipation was not particularly pleasant.
No laughing please. Pass the laxatives.
As I discussed with my physio, there was a way to reduce my pain and remain, compos mentis. You may recall me previously mentioning steroids. The timescale for the use of steroids after the shoulder operation was crucial as their use could reduce recovery time. Yet, if the timing was right my doctor could prescribe the pills and I’d be pain free within hours. That sounded like a good plan to me but who would be able to give me a definitive answer? My physio suggested that I contact the Rheumatoid Arthritis helpline. I had their number so what could go wrong?
‘We are unable to take calls on this line so please leave the following details and we’ll get back to you shortly. We need the following, blah de blah.’
Not again. The female voice seemed so horribly familiar, yet I knew she couldn’t be working at two different hospitals, could she? Initially, time stood still but if I had more hair I’d be bald in minutes. Screaming down the phone, pleading that I needed these tablets to save my sanity was a waste of breath. I knew it would be but my frustration had boiled over and it simmered for some time.
Again, I awaited a response from the NHS. All my fingers were crossed once more. Whatever was coming next had better be soon.
Yet this time, I was wrong, big-time. A nurse in the rheumatology department did phone back, bless her. As none of their specialists had seen me they would need my doctor to ring up and speak to a registrar about my condition. Another phone call to my doctors then, which was made, received and understood. My doctor would make the call and I, I would learn to curb my patience and await my fate. That didn’t sit well on my already overburdened shoulders but what more could I do?
I reckoned my story would make a super screenplay. It had all the ingredients - the poor bastard trying hard to simply reduce his pain - the overworked doctors and nurses trying to do what they can - and the massive problems in communicating effectively.
Think of the storyline; it could go on for months, perhaps years. What say you, readers? Do you reckon it’s a winner? Or not, as the case may be. It’s up to you of course, totally up to you.
Thursday the 13th of September was the day the telephone rang and I finally had some answers. My super doctor was on the line and he told me that a course of steroids was not an option now. Alas, that would mean a further wait of three very uncomfortable weeks. He continued to explain that the drug, methotrexate - the normal, and toxic one, for those with rheumatoid arthritis - might have to be delayed if the specialist was in any way concerned about me taking a course or steroids in the weeks leading up to my appointment. Hence his previous comment. I was gutted but in my heart, I knew he was right. All along my journey of wallowing in the many troughs and conquering the few peaks, I‘d held on to the belief that being pain free again was simply a walk around the nearest corner; the tantalising corner that inexplicably couldn’t be reached. The more I thought about his words the more, riding out the storm came to mind. I was determined that my boat wouldn’t sink. Roll on October the 2nd, I shouted to myself.
I forgot to tell you that my doctor’s last words, were, as ever, so supportive. ‘If you can’t manage the pain telephone for an urgent appointment and I’ll do all I can to help’.
The sun came out later in the day and a walk, or perhaps it was a shuffle down by the sea, gave me a lift. It was good to feel the warmth of the rays. And the full English Breakfast - for lunch - went down a treat. Being determined not to take the codeine tablets over the last few days also helped as my brain moved up a notch or two from its recent semi-comatose state. The dear thing even reminded me how I should cross the road without being run down by a maniacal cyclist who was oblivious to the fact that I was already on the crossing.
As I drove back to my home later, I felt adequate but at least that was better than yesterday.
Yesterday? Yesterday was a crap day.
Once indoors I took the calendar off the wall. Ticking the days off on my medical advent calendar would, I hoped, give me a goal to aim for. No matter what, I had to try and lead as normal a life as possible.
On Saturday the 15th of September I took note of the number of days since I last took codeine. Four or five I guessed. My joints had naturally complained but at least my brain was beginning to function once more. Rather than ask my better half, I actually remembered a few events, their dates, and the tasks that I had been asked to accomplish. Now that was a small victory.
At the same time, I checked out the number of days since I started taking my stop-gap tablets, Hydroxychloroquine Sulphate. Try saying that name correctly. These were prescribed on the 9th of August, give or take a day or two.
I quote their description. 'These tablets are used in the treatment of inflammatory diseases such as rheumatoid arthritis. It may be several weeks before you notice an improvement in your condition with this medicine.'
They hadn’t worked so far but maybe, just maybe, the Hydroxy-wotsits were having an effect, albeit a small one. Alternatively, it could all be in my head as whilst my thoughts were clearer, my inflamed joints still woke me up every single night.
It was also the day that I took a long hard look at my feeble body in a full length mirror. With so much muscle wastage I looked more like a stick insect than anything else. And that’s with the exercises that the physio gave me. Still, I could see some improvement from the last time I dared take a peek. Perhaps next week I could take a swim, or even a paddle, at the local pool.
No matter what you think folks, I won’t need arm bands nor the assistance of the lifeguards, unless of course it’s one of the pretty ones.
Before returning to the hospital three weeks later, time seemed to crawl and the walls of my incarceration closed ever tighter. My cell was larger than one in any prison but I was still under the lock and key of a disease way beyond my control.
Sobbing is optional but please pass around the tissues if you do.
It was the 18th of September, a Tuesday, and that meant the first autumn session of my local writing group. I didn’t feel like sitting on a hard chair for two hours but at the last moment I decided to go and took the softest cushion I could find with me. Everyone was friendly and concerned about my condition yet we soon concentrated on the tasks in hand. Well, they did, and I did my best. At least I managed to type out one short story before the stress in my fingers told me that enough, really was enough, for the day.
Unlucky? I hope not but I have 13 days to wait before my rheumatology appointment on the 2nd of October.
On Saturday the 29th of September I sat on the sofa and contemplated what had happened over the last few months. My appetite had all but disappeared, my joints still hurt like hell at times, my decision making was poor and getting up in the morning was still a chore. And I didn’t forget the wave after wave of tiredness that still hit me on a daily basis. Why was this happening to me? I was full of self pity and needed, no demanded answers, but what else could I do but await the invitation to attend the Q.A.
If you’ve read my missive so far, I thank you for your patience as the end is not too far away now.
Tuesday the 2nd of October was the day I finally met the specialist. What a nice man. He went through everything and checked parts of my body that even I hadn’t bothered with. I had an x-ray of my chest, both hands, and was taken through all of the treatment options. He was especially concerned at my weight loss over the last five months. However, whilst a plan was set out for the future, I couldn’t help feeling disappointed as I was still not going to receive the new medication, Sulfasalazine, immediately. Apparently, Methotrexate, the ultimate pill, was the last option. Both were toxic but Methotrexate was worse. I couldn’t say anything but nod and agree.
Sometime in the next two weeks, I would be asked to visit the department again. A specialist rheumatology nurse would run through all the side effects of the new medication and arrange regular blood tests as the drug can affect the liver and white cells.
You’re right, it’s too technical for me too.
I knew this had to be the way forward, you know, one step at a time, and being a grumpy old sod was not my forte, well, not too often anyway. Yet after five months of barely moving forward, I found it so difficult to curb my impatience, particularly as my sleep pattern was woeful; every two hours I awoke due to the pain.
Try that for a week people and I guarantee you’d be banging your head against the nearest wall.
Time slowed to a crawl as the clock on the wall slowly ticked my life away.
It was Thursday the 4th of October and that meant an appointment with my physiotherapist at the hospital. As usual, she put me through the stretching movements and, happily for me, I passed. My shoulder wound had healed and my movement was good. That’s one visit less then, I said to myself as I went to depart. But she wanted an update about my spiteful disease before I left. Her face dropped an inch or two when I told her that I was waiting for another appointment, again. She frowned, thought for a few seconds then suggested that I make a visit to the Rheumatology department immediately. She suggested that I talk to a nurse and ask whether I could have a steroid injection as I was still awaiting the new medication.
Did she know something that I didn’t? I did as I was bid and walked off.
When I arrived all the nurses were busy; they were indeed for all the seats in the waiting area were full. However, if I completed a form with all the relevant information on it, I’d receive a phone call from a nurse to discuss my concerns. Some three hours later the phone rang. Three minutes after that my shoulders slumped, my heart raced and I could feel anger rising up inside me. Taking a few deep breaths, I told myself to stay calm and talk coherently.
Believe it or not, I did manage it.
The computer system was showing a follow up appointment in six months’ time. I knew this was coming although I didn’t have the date. But there was no record of a meeting with a Rheumatology nurse within the next two weeks to guide me through the details of the new medication, Sulfasalazine. Once more the system had failed me.
More tissues folks.
I inhaled deeply and repeated what I had been told. I also carefully explained the long wait over many months for the correct medication and asked for clarification over the use of steroid tablets or a steroid injection in my bum. Saying that she was soon to sign off for the day and would need to pass this information onto the next nurse didn’t fill me with any confidence. Pushing a bit harder, I carefully explained that I reacted very favourably to the steroid tablets as all pain vanished overnight and for two wonderful weeks I was pain free. Explaining that my life was on hold, due to the severe discomfort, perhaps registered as she went quiet for a moment. Unfortunately, I was wrong. With her last words telling me that someone would ring me back was akin to pulling the rug of hope from under me.
I decided to phone again the next day as I was so pissed off with being pushed from doctor to nurse, and from visit to phone call. The outcome, was, let me say, a bit disappointing. Me being master of the understatement came to mind. The system was in full flow and I’d have to wait.
Eventually, my appointment to see the specialist nurse arrived. Another two weeks in limbo then.
Whilst I waited, my wife, suggested it might be appropriate to check my weight. I knew my arms were a bit skinny but bloody hell, I’d lost one and a half stone in six months. Luckily, another of my doctors agreed to an emergency appointment. She checked my weight, my stomach and my eating habits. I told her since this problem started my appetite had all but disappeared. Blood tests were needed but she suggested a course of action that surprised me.
I was to eat all the food usually deemed bad for your health. That meant that I should eat cake, rich puddings and chocolate. But all with double cream, ice cream and anything else that would fatten me up. Sweet food was in, big time. After a few days on this diet, my weight began to rise just a little but it was early days.
At last, my appointment with the nurse arrived. At 4 pm on Monday the 22nd of October, I would learn my fate and hopefully, be given the correct medication.
Feel free to hold your breath but not for too long. I’ll let you know.
Another week flashed by faster than an express train. I must continue to take a single Hydroxychloroquine table every morning and evening with food, but at last, Sulfasalazine was my new toxic friend. Building up the dosage was essential, as was the drinking of much water with each tablet. It was too early to say whether the combination would work but I would know more once my fortnightly blood tests were under way.
I was almost hopeful, or maybe not.
It was Tuesday, the 20th of November to be exact and my stomach was churning like a washing machine on a spin cycle. After putting up with the discomfort all week, I’d had enough. I guessed it was the increase dosage of the Sulfasalazine but to be sure, I left a message for the specialist Rheumatology nurse. Within two hours - that’s quick – she returned my call. Agreeing with my self-diagnosis, she told me to reduce the toxic drug from two to one tablet in the evening after I eat.
One week later and my dear old tum was not complaining as much as it was. And I could just about tolerate the discomfort.
Apparently, this side effect could happen and I had to be patient. How nice.
The phone rang and a specialist nurse explained that I was booked in for a hydrotherapy session on the 13th of December. Surprised? I was. Nicely, of course. I arrived, undressed and entered the warm and sacred waters of the hospital. Being put through many stretching exercises by Felicity, hurt both my arthritic hips, but was it worth it? With my mobility improved by the next morning, it was. And to cap it all, I was booked in for another session on the 20th. At last, things were looking up.
The day after my trip to the pool, a lady from my doctors phoned. They’d had a letter from St. Richards hospital which stated that I’d missed an appointment in October. Really? They’re wrong for two reasons. Firstly, what appointment? And my second point was very simple and unquestionable. My notes etc. had all been transferred to my local hospital - please refer back to my paragraph about my doctors dealing with this on Thursday the 30th of August.
I remember shaking my head, looking up to the skies and cursing loudly.
Couldn’t they see from their records my papers had been transferred? No wonder parts of the NHS are in a mess.
It was Monday the 17th of December and I did something a bit reckless. I went swimming. Taking a chance with the chlorine was one thing, being unable to swim many lengths, was another. Surprisingly, the changing and pool areas were warmer than I remembered from last year and the level of chlorine was lower. Enabling me to breathe without struggling was a major plus. I managed 12 lengths over thirty five minutes, which, whilst poor for me, was a giant leap forward. Fresh blood surged through old veins. I hadn’t felt so alive since early May.
Could this finally be the turning point in my drive to return to some semblance of normality?
Look out world, I’m coming back. Just don’t tell anyone when. After all this time, I’d hate to be disappointed.
Roll on Thursday.
Alas, nothing to get excited about reared its ugly head on Thursday, that’s if you ignore the second trip to Hydrotherapy. It was great. Felicity gave me a sheet of exercises and told me to do all the reps as shown on the page. Easy-peasy, I thought, and it was. In fact, I had enough energy to do them all twice, for I was determined to get as fit as I could. Another step forward then, but it wasn’t all a bed of roses. Taking a lower dosage of Sulfasalazine had stopped my tumble-dryer stomach, but at the cost of a bit more pain in my fingers and my shoulders. Was it simply the exercise in the water? Perhaps, but I doubt it. The hurt came from the joints, not the muscles.
I would be having another session in the pool on January the 7th and afterwards the pleasure of another blood test.
Better still, roll on 2019.
I was booked in to the rheumatology department in January 2019. Alas, the specialist wasn’t available but the nurse did a good job in his stead. All of my blood tests showed no damage to my kidneys or my liver. Yippee! However, the tests would continue until my condition was under control. I thought that was great news, to be honest, but as my hands were still hurting it was made clear that the arthritis was still active. Oops. Thus the dosage of Sulfasalazine would be increased once more. Initially, I was reluctant to agree as my appetite had been pretty good over the last two weeks. But needs must so I decided on the following. In the morning, one tablet of Sulfa-wotsit and Hydroxy. And in the evening, one tablet of Sulfa etc. and one of Hydroxy. However, on alternate days I would take two Sulfa tablets in the evening. Only time would tell whether it would work but at least it was a plan.
Today, the 30th of January 2019, it is time to end my missive. Nine months have passed since my awakening on that, never to be forgotten, morning. I’ve been treated shoddily, ignored, cared for and helped.
I journeyed to the Hydro pool for the last time. Felicity explained that she couldn’t challenge me enough now. She was spot on. I’ve been swimming twice since Christmas. Add on the exercises from Felicity and my arm muscles were, at their own leisurely pace, finally beginning to firm up. I will miss her and all the staff in the Hydrotherapy department. They were chatty, obliging and supportive. Nothing was too much trouble.
I took a peek in the mirror when I returned home. My sparrow arms had improved. I was now the proud owner of, wait for it, pigeon arms. Yippee! Once the NHS physios start on me I’ll soon have arms like a, well, like an eagle. I know I can be sharp but I’ll ignore any reference to talons, for now.
About this time I asked the specialist nurse in Rheumatology about travelling abroad this year. The lovely lady was positive. With all of my blood tests - remember I have them every two weeks – being negative, I should be able to go away for up to four weeks.
Perhaps I can now look forward to a holiday in the sun? Who knows? But I’ll try my hardest.
If you’ve managed to read all of my tale, I salute you. Give yourself a gold star but do read on. I’d hate you to miss the grand finale.
Do I blame the NHS? It’s a difficult question to answer, as I do, yet I don’t. Without getting into any political debate it is clear that the NHS cannot cope with the increasing demands placed upon it. That being said, I wonder why the simple things - like returning calls, replying to messages left on an answerphone and responding to recorded letters - are being ignored. I was always taught if you got the basics spot - on then you had a good chance of getting everything else right. Alas, that simple tenet seems to have been forgotten.
The various staff members that have crossed my way were generally very caring, with a few really going the extra mile. Unfortunately, a small number could do better and it’s those that folk remember; people seldom praise but often don’t hesitate to complain.
Excluding some names seemed appropriate.
If I don’t catch you in this life, I’ll see you in the next.
And that really is the end folks.