Monday, 16 October 2017

Beds, bugs and Bruno.

Due to circumstances beyond my control, last week I found myself with nowhere to stay. For the last few months I have been living with a friend in her gorgeous cottage in Somerset but as her boyfriend was coming to stay, we agreed I would vacate the premises for the week while he was here. I had arranged to visit friends and family in Yorkshire and Cumbria but at the last minute I had to stay in the area rather than head up north, and suddenly realised I was a bit stuck.

I am quite used to scrabbling around trying to find places to stay while I've been house-hunting. Over the last year I have stayed in practically every Airbnb, B&B and Pub in Bristol, Bath and Frome. Some have been more expensive than others because they've been conveniently positioned to wherever I've been working, others have just been cheap. But I have never had to find somewhere with only a few hours notice that would be ok to stay in when ill. My RA has been particularly hard to deal with because of the chronic fatigue, nausea and pain... it leaves me utterly incapable of doing anything for more than a few hours and I have spent much of the last 8 weeks in bed. My lovely cousin had offered me a bed but her household had come down with flu and because my medication lowers my immune system, that was out of the question. So it was a tricky one. I could hardly ring up some of my newer friends in the area and ask to stay when I would have immediately turned up at their house, said hello, and then needed to sleep. Not the most social of things to do. I also needed to be close to Frome because of some appointments so it narrowed my search somewhat. After some panic googling, I found a place near Shepton Mallet, a town I have subsequently learnt is referred to as 'Shit and Smell it' by locals as it is often said to be one of Britain's worst places to live. No wonder the pub I found had rooms available.

For £35 a night I was offered a double room with ensuite bathroom and breakfast was included. Now I have never stayed anywhere that cheap that wasn't utterly horrific. It didn't disappoint. The pub itself was next to one of the areas busiest roads and in order for the guests not to be kept awake by the constant stream of traffic, the windows were painted shut. It made no difference, in fact, because there was also the constant hum of the kitchen extractor fan just below the bedroom window, extracting, by the smell of it, old cooking oil. I also found myself being jolted out of bed every 5 minutes by a loud hollow bang that reverberated around the room and made the bed shake. I discovered what was making this loud bang when I bravely entered the main bar downstairs, a few hours later.

There was only one man working in the pub, who seemed to be responsible for not only manning the front desk but also serving drinks, taking food orders, and probably cooking the food itself. I use the term 'food' loosely. The extensive menu (4 pages, large bold type) consisted of things that had once been frozen and would now be fried... Chicken and Chips, Fish and Chips, Chicken nuggets and Chips, Fishcake and Chips, Deep fried Camembert, Deep fried Prawns... you get the idea. In fact, the only thing on the menu that wasn't going to be engorged in boiling vegetable oil was Sausage and Mash, so that's what I ordered, careful to request that my sausages be cremated (I didn't want to risk food poisoning on top of everything else!). Were there any vegetables I asked? The man frowned and said, "Well it comes with mash". O-kay. What worried me was the speed in which my meal arrived. Yes, I was the only one in the pub, but still, to cook sausages from scratch in under a minute was a bit of a concern. Maybe they too had been fried. The sausages did not taste like any kind of meat I'd ever had before and the mash, well it took me back to my school days... watery, cold, lumpy and drowned in lukewarm gloop that I guessed was gravy. It was utterly revolting but at the eye-waterning price of £10.95, I felt obliged to at least have a few bites. I could hardly complain and send it back because it really wasn't that kind of place. It would have been replaced with something equally horrific anyway!

I did discover from the receptionist/barman/cook what the banging noise was, however. "Oh, your room is above the men's toilet," he said. "It's the door banging every time someone goes in for a pee". Oh how lovely. "But it bangs every few minutes," I said, "and there doesn't seem to be anyone else here but you and I." "There's everyone in the kitchen," he replied, gesturing to the door with his thumb. Everyone in the kitchen. Surely everyone implies quite a few people. What on earth were they doing in there? Certainly not preparing gastronomic delights for everyone in the pub!

My night was not spent sleeping. I had become used to the traffic noise and once everyone in the kitchen had left for the night, the banging loo door also stopped but what kept me awake were two things; The stifling heat and the motion sensor light outside. The heating was kept on high throughout the night and as anyone knows from staying in a cheap hotel, the sheets were also cheap, which meant polyester, which meant sweaty. I couldn't open the windows so lay there suffocating. Then there was the incredibly bright motion sensor floodlight that was triggered every few minutes and invaded the room like a spaceship, glowing menacingly through the very insubstantial paper-thin curtains. It meant that there were either creepy Shepton Mallet low-lives walking around, about to break in and attack me, or there were wild animals! Listen, I was ill and sleep deprived so my imagination was slightly overactive. The lights also attracted a myriad of giant moths and insects which hit the window with such ferocity, I thought they would break the glass.

Safe to say, I felt and looked much worse in the morning than when I had arrived, but I was hungry, needed to force down a bit of breakfast so I could take all my medications, and only then could I try and sleep again. Breakfast was served between 7am and 8am, an incomprehensible time slot that definitely did not appear to be designed for the average tourist or holiday maker. And guess what... that's exactly what was not in the breakfast room (I say breakfast room... it was in fact the same room I'd eaten in the night before). Four of the tables were occupied with pairs of big burly men in workwear. I don't mean that in any derogatory manner, it's just a fact. Overalls, boiler suits and jeans, covered in an array of paint, plaster, earth and god knows what else. They all stared at me as I staggered over to a vacant table... not in an appreciative "Ooh it's a woman," type of way, more of a "Jesus, what has the cat dragged in!" kind of way. I was not looking my best. Matted hair scrunched into a topknot, dark circles under my bloodshot eyes and a deathly pallor that normally would have put the average person off their hearty breakfast, but not these chaps. A cursory glance and they went back to shovelling great forkfuls of baked beans, fried eggs and sausages (probably mine from the night before) into their mouths! But where had they all come from? They certainly weren't here the night before... or maybe they were, and had been the ones triggering the light through the night. I didn't really care to be honest, I just needed food. There was only one thing on offer, a Full English, which didn't surprise me because it's fried after all. I managed a few mouthfuls of molten lava-hot beans and a few bites of burnt cold toast before the queasiness took over and I departed as quickly as I'd arrived. I headed for my room, collapsed on the bed and amazingly managed to sleep for the rest of the day. And then, even more amazingly, I slept through the night.

It's a fantastic feeling to wake up and feel better. Well, not better better, but I had managed to sleep on and off for more than 18 hours and the never-ending fatigue had suddenly lifted slightly. But I knew I couldn't do it for another night, not with the prospect of banging door, the bright light, the heat and disgusting food, so I decided to go upmarket (upmarket meaning anywhere but here) and booked myself into a Travelodge. Basic, clean, quiet. The only slightly off-putting thing when I checked in were the two ambulances parked outside the front entrance. I asked the receptionist what was going on and she just pulled a sad face. Oh God. She handed me a key, then took it back, pulled another face and scratched her head. "I'll put you on the top floor, right at the end of the corridor so you won't hear anything." Oh God. I walked to the room trying not to imagine what on earth was going on elsewhere in the hotel, and just to be on the safe side, dug out some old fluff-covered earplugs, drew the curtains and fell asleep. I didn't hear anything, I didn't see anything, and I didn't feel anything.

I left the next morning feeling a little more revived but halfway to Frome, realised I had left my hot water bottle in the bed. Now I don't care about the rubber hot water bottle itself, it is the hot water bottle cover that I care about. It is a very old, very shabby-looking, brown, furry, hot water bottle cover that all my friends know about because it has traveled with me for the last 20 years. His name is Bruno and he is a dog. Even boyfriends have had to fight Bruno for space in my bed, sometimes a little bewildered when a foot meets fur instead of skin. Bruno is there all year round you see, through spring, summer, autumn and winter and I don't care who knows it. But now I had left him behind and wasn't going to be back in the area for a few days. My Mother urged me to call the Travelodge and get them to keep him safe for me. I felt a little idiotic but I rang and spoke to the same receptionist who had checked me in the previous day. "Yessss, we found it," she said laughing, "But the cleaner had quite a fright when she stripped the bed. She didn't know what it was." "Yes, that's happened to me before," I said, remembering similar scenarios. "But then again," I added, "You must have had weirder things left behind." "Oh my God yes," she said, "But we don't talk about those!" I laughed and then remembered the ambulances. "Was everything ok with whoever was ill by the way? The ambulances?" There was a slight pause, and then she said, "What ambulances?" I guess they don't talk about those either!

Thursday, 5 October 2017

Hidden Illnesses

Over the years I have had a lot of different illnesses and operations, and I've noticed that people react very differently to ones that are obvious or visible, like a knee replacement or a bug that might leave you pale and sickly-looking, and those that are invisible, such as depression or something affecting your insides. The hidden illnesses may not leave physical scars or change the way you look but they can be far more debilitating and have more of an impact on both your daily and future life.

I have many physical scars from surgeries but I also have the physical memories of get well cards, letter and emails. The hidden illnesses certainly don't get the same level of attention and I think it's mainly because they aren't obvious and therefore probably not talked about as much. Unless you walk around with a sign most people are oblivious.

I was diagnosed with severe autoimmune disease 8 weeks ago, a hard-core, life-sapping illness, often referred to as Rheumatoid Arthritis. It is not, as many people think, quite the same things as having a few swollen joints after eating spicy food, or having a crooked finger or toe. When it is severe, it is a chronic and progressive disease that causes inflammation throughout the whole body. Yes, it affects the joints and is incredibly painful but the reason it can be so debilitating is that your own body's immune system starts attacking itself. A normal immune system attacks outside invaders in the body but due to a bizarre re-wiring, the immune systems of people with RA fight themselves, which is a bit silly, and a bit crap.

A few months ago I woke up with a shooting pain in my right hand and wrist. It was very swollen and hot to the touch and I couldn't move it without screaming in pain. I thought back to what I'd done the previous day and realised I had attempted a bizarre new manoeuvre in my Pilates class and hung upside down on a trapeze for several minutes, alternately gripping the bar with my hands or feet... I thought maybe I had ruptured some tendons. I took myself off to A&E, they took an x-ray and agreed that as nothing was fractured, then it must be torn tendons. On with a soft cast, and 2 weeks later, a visit to my GP. My GP was puzzled. She didn't think it was tendons. In fact, she didn't think it was anything that I'd done physically and immediately sent me off for blood tests. A few days later she rang and told me to come and see her. I made an appointment and she very slowly explained what the blood tests had revealed. Acute Rheumatoid Arthritis. I, like many people, thought that Rheumatoid Arthritis was a few painful joints and I simply shrugged it off, thinking it would get better in a while.

I remember my father suffering from RA around the same age when we lived in America, and he had been treated, very successfully, with gold injections! I had never talked to him about it at great length because I had been away at University and by the time I was back, his symptoms had almost disappeared. He never spoke of the initial diagnosis and how it had affected him. My mother never spoke of the months spent helping my father get dressed because the pain was so awful. My sister never told me how shocked she had been, seeing my father bent and crooked and walking with a stick, aged 50. I was oblivious to it all, until now.

Unfortunately, the gold injections my father had are not the most common form of treatment used nowadays (as you can imagine) but as Rheumatoid Arthritis has no cure, it is one of the most heavily funded and researched illnesses. As a result, there are many ways for it to be treated with different drug therapies. You are never actually cured of the disease but most people do go through stages of remission and can have years where the disease lies dormant. The first 3-6 months are the worst I am told. The Rheumatoid specialist I saw a week after my initial diagnosis was very clear about that. Be prepared because it spreads through the body like an out-of-control wildfire, getting much worse before it gets better. It swells your joints and heats your body and feels like flu most of the time. A dull ache in the bones, an ever-present roaring headache, nausea and dizziness and a chronic fatigue I never thought possible. Without doubt, I have never felt so ill in my life. But it is hidden in my body, and apart from the lumps on my wrists, the puffy hands and knees, a bit of a limp and the red flush from the steroids, I look fine. Tired but fine. Rosy cheeked but fine. And because I look fine, most people think I'm fine.

I haven't been able to work for 4 weeks now. My doctor said I should stop working for 3 months but as a self-employed designer that is simply impossible. If I don't work, I don't get paid. If I don't get paid for a period of time, then my whole life falls apart. Initially, I thought I could strap up my hands like a boxer and carry on as normal but this illness has caught me by surprise. The exhaustion is overwhelming. By the time I have showered and dressed (very slowly using my left hand only), I feel as if I haven't slept for a week. Many mornings, I have barely been able to get out of bed as the pain soars through my body. Some days I can't move my fingers and other days I can't move my hands and some days I spend the morning with my head in the toilet bowl. My wrists are in soft casts much of the time, so I don't accidentally bend them and cause torturous lighting bolts to shoot up my arms and down my fingers. I have an additional complication and that is Sjogren's disease, an irritating infliction which causes extreme dry mouth and dry eyes. I hate it, and hate that if I don't constantly chew gum or suck a sweet or have a litre of water at my side, my mouth feels like a desert and my eyes itch and burn.

The pills are a work in progress too. I have no idea at this point whether the numerous medications are causing ill effects or it is the disease itself. The side effects, from what is essentially a low dose of chemotherapy, are horrendous... mostly nausea but with the added fun of vertigo and ringing ears, something that I can only associate with clubbing in London! It's impossible to try and describe how all this feels to someone that has no experience of it, and I hate myself when I text friends and moan about how shit I feel. Poor me poor me is one of the traits I despise but if someone asks me how I feel, I can't lie about it. The worst things is having to try and do anything for myself when my left hand is the only functioning one. And I am not left handed. I can no longer clean my teeth, brush my hair, pull up my jeans, do up buttons or make food with my right hand. I cannot grip you see. So imagine how long things take. I end up with toothpaste by my ear, my hair in knots and my shirts skewiff. It's ridiculous. And apart from people who have damaged their wrists, fingers or hands in the past, the only people that can relate to this are other RA sufferers.

I was advised to join an RA community online by my rheumatologist. Not only are there thousand of people that have gone through, or are going through the same thing but they can offer support, suggestions and advice that you might not get elsewhere. My family have been amazing which goes without saying and I truly cannot thank my mother and father enough for their hospitality and the offer of a bed and love whenever necessary. But the timing is shite. I am in a new chapter of my life, working for new clients and meeting new friends in Somerset and it really isn't the easiest of things to explain. I have had to cancel bookings and nights out, weekends away and dinner parties. I meet new people and wince when they shake my hand. I go to the cinema and can barely keep my eyes open. I try to go swimming and can't swim... treading water for half and hour like an idiot because I can't use my hands. I do get peculiar looks I must say. Some friends have been amazing, always there, always asking, always offering and always there at the end of the phone. Some have gone beyond... offering beds, bringing round food and books and cards. And others have problems of their own, their own health to look after, their own pain, their own suffering, and we trade paragraphs of support and  love via our phones.

Let's just hope things start to improve. It has been 8 weeks so far and the latest blood tests aren't so good. Worse inflammation, worse pain, worse. I have been at my parents house for a few days each week, and know I can relax here without worrying too much. I'm not asking for sympathy or even empathy, I'm simply asking for understanding.