Reflection.

On a June night in 2015, I went to bed perfectly fine, I had no symptoms of any form of illness. I was more tired than usual but I put that down to working night shifts. I woke up with Lupus, which sounds like a bold statement but that’s exactly what happened. I was fine one day and I was sick the next day. That was how quick it was, it was as if my immune system went into self destruct mode as I slept.

In an odd way, and I think this is common for anyone with a chronic illness, I’m waiting for the day I wake up healthy again. I’m not naive and I know that won’t happen, it’s more of a dream of mine, to wake up and feel like I can tackle whatever the world throws at me. I spent 20 years as a healthy person but I’ll spend more years unhealthy. I can’t remember what it’s like to be healthy and the healthy version of myself feels like a character from a novel. But, that is exactly what is it, that chapter of my life is finished, it can’t be edited and there’s no room to write more. It reminds me that at any moment life can be permanently changed and you have to learn how to walk on the new path you’ve been given despite it being rocky and uncertain.

I often wonder if I was destined to get Lupus, as if it had been lurking in the shadows waiting to pounce on me. I wasn’t particularly a sick child, the only major issue I had was developing something called Idiopathic Thrombocytopenic Purpura. I was hospitalised for it and when I told my consultant about it he thought it was “very interesting indeed”. I can’t tell you why that was interesting because consultants don’t elaborate on matters that they deem ‘interesting’. However, it has made me wonder if ITP and Lupus are in some way connected.

The chances of a father passing Lupus to a daughter is uncommon. When my dad was diagnosed, my parents asked what the risk was for my brother or I developing the illnesses, they were told it was highly unlikely. In a sense, it’s slightly mind boggling that I have both illnesses. The first time I met my consultant he informed my dad and I that our blood tests were very nearly identical, again, this was something he found very interesting.

Sharing the same illnesses has brought to light just how similar I am to my dad. The obvious, I have the same illnesses, knobbly knees and weird feet. And then there’s the little things, a liking for spicy food, enjoying sweets and fizzy drinks a little too much. We’re both quite mellow people but we definitely make mountains out of a molehills. If we get an idea into our heads, it has to be done there and then. I would say I have a lot of my dad’s mannerisms too. It’s strange how I look so much like my mum but everything else is from dad.

As children, my brother and I weren’t shielded from my dad’s illnesses. But, our parents didn’t go into great depth because a child wouldn’t have been able to comprehend it. We just knew his immune system didn’t work properly and his blood clotted easily. However, at 15, I had to do a project in my Health and Social class. I had to chose an illness and research it, naturally I chose dad’s and that was the first time I delved into his illnesses. The more I researched, the more frightened I grew for my dad. I was saddened to learn he had pain daily, in my naive head, I thought he only felt pain when the illnesses flared. I became intrested in his health, I’d watch him fill out his medication and I learnt how to give him his injections. It didn’t cross my mind that in 5 short years, I’d be in his shoes battling the same illnesses, why would it? Teenagers think they’re invincible and I wasn’t immune to that mindset.

Life can be tipped upside, I didn’t expect this, I had my 20s planned out completely different. Things happen that we can’t change but we can grow with it. From someone who has had their health stripped away from them…please treasure and be thankful for yours. You don’t know how lucky you are to have it.

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Rheumatology appointment: 30-08-2018

This visit to my Rheumatologist was a little early due to him going away.

The routine of the appointments never change, I check in and wait for the nurse to do the usual checks. My blood pressure and weight was taken, actually my weight was checked twice. I probably should have told her the 6kg loss was intentional and nothing to worry about when I got on the scales the first time.

My consultant asked how my headaches have been, I told him I still get them but they aren’t as severe since starting Apixaban. We discussed that a few weeks ago, my white cells started dropping again but they went back to a normal level without intervention.

I told him that I didn’t cope well in the heatwave which caused a flare. He wasn’t surprised by this as Lupus hates the sun. I also told him my joint pain has mostly been circulating my knees, elbows and wrists lately. He told me to keep taking codiene, paracetamol and ibubrofren for the pain.

He showed me my blood test results, my ESR levels, which in layman terms shows how ‘sticky’ my blood is, is the best it’s ever been. Overall he is happy with all the results, they are looking stable.

Due to my bloods looking good, I have made the decision to take myself off fortnightly blood tests. I don’t see the point in continuing such frequent testing if the results are stable. I’m going to call my GP tomorrow and book in for blood tests in 6 weeks time.

My treatment plan is staying the same. There isn’t any need to change any medications at the moment. Things started to go downhill for me back in April and there were times I felt extremely poorly. It doesn’t sound like much, but it means a lot to hear my consultant say he’s happy with how things are. He smiled at me and said “I’ll see you again in 6 months”. I’ve been waiting ALL year to hear I’m back at 6 monthly appointments. I guess I’m still winning, Lupus.

How Lupus made me an actress

Everyday I have pain surging through my joints. I have headaches daily. My body aches, walking can feel like wading through water. I feel like I’m drowning in fatigue. Lupus is felt by me daily, because it demands to be felt, but it doesn’t demand to be seen.

“How’re you?” is, like most people, a question I’m asked daily. My answer is always the same “I’m doing good”, very few people can detect that I’ve just lied to them. I recently started flaring and my mood slipped low, it’s something that happens a lot during a flare. I’m almost certain that my efforts for it to go unnoticed were successful.

When you’re diagnosed with an incurable illness, you slowly learn how to act. You learn how to smile when smiling is the last thing you want to do. You learn how to do a convincing laugh, when all you want to do is be in bed resting. You learn how to act like everything is OK and that you’re OK.

My main reason for covering up how I truly feel, physically and mentally, is because I don’t want to upset people. I don’t want my loved ones to feel hopeless because they can’t help me. I don’t want people to think “oh here she goes again with endless complaints”. I certainly don’t want to look like I spend half of my time moping around about my illness and how it affects me.

I view my illnesses as a personal thing. There isn’t much anyone could do to help me feel better, it’s a matter of me listening to my own body and doing what it asks. I decide what painkillers would be best with the level of pain I have. I decide if I need to spend the day resting in bed and I decide what I can and can’t do. My family disagree with this, but I struggle to get out of the mindset of it.

My response “I’m doing good” has become an automatic response. My mind doesn’t even think about being honest anymore for the reasons listed above. And, no matter how hard I try to be honest, my mind just doesn’t let me.

Lupus flare number…who knows?!

I have contracted some kind of bug. Lupus and what I call ‘normal people sick’ don’t bode well. It would seem that my immune system sets off to do the right thing, to attack the intruder, but gets confused on it’s way there. It starts attacking my joints healthy tissue instead. It gets to the point I can barley feel the sickness bug and can only feel Lupus. In a sense, when I get a bug I also get a shitty freebie, known best as a Lupus flare.

I spent yesterday in bed reading a book whilst on high strength painkillers, it’s a miracle I followed the story. The pain was consistent all day, a sharp pain radiating through my elbows and knees. I also had all over body aches and muscle pain, particularly in my thighs and calves. The little joints in my hands were also affected by both dull and sharp pains. The pain killers were only taking the edge off, they didn’t offer much relief.

When I got up to get ready for bed, the sharp pains in my back started. I’ve been having them quite often recently and the pain reaches under my ribs on either side. I got back into bed and took more painkillers, this would have been my fourth dose of them. And, you’d think by 4 doses of high strength painkillers, I’d be in a comatosed state ready to sleep. Haha, nope. I lay on my side to sleep but the pain meant I had to switch sides every 10 minutes. I tried laying on my back but that hurt after a few minutes too. The pain in my knees meant that having them resting on each other hurt. My elbows by this point were in their own league of pain. I wanted to use my heat pad, especially on my back and sides but due to the heatwave, my room still resembles a sauna.

I tossed and turned until I finally fell asleep at 5.30am. I woke up at 9.30am but I managed to get a couple more hours in. I’m unsurprisingly knackered and my joints are still sore. I took a warm bubble bath this afternoon in the hopes that the heat would settle my joints, it didn’t. My back and sides still hurt and my body aches like I’ve been dipped in concrete. This evening there is a new pain in my ribs, it hurts when you press down, I’ve never had it before so I’m going to have to decipher a way to combat that tonight.

I haven’t done much today, I have just rested like my body has asked. It gets unbelievably boring though, there’s not much to do during the day on your own.

Lupus is most definitely active and frolicking around my body causing mayhem. Tomorrow is another day.

Ps, I’m taking a sleeping pill tonight.

Why I choose to be open about my illness

Health is viewed as something that should remain private, something between yourself and your doctor. I understand why people are taken aback by how open I am about my illness. After all, writing about the intricate details of your illness for anyone in the world to read is almost unheard of.

At first, being open wasn’t an option, everything was to remain private, with the exception of family and close friends. My father, who has the same illnesses, is notoriously private about his health. In fact, he only started to talk about his health with me, when I was facing the same fate. Not hearing him speak of his illnesses became normal to me, I thought that was how you were to handle having a chronic illness. And, that is partly why I decided remaining private was the best decision.

At the start, there was nothing to indicate that I was poorly, only a bright red rash on my right cheek. But as the months went on, I grew pale and I looked exhausted. A picture of my cousin and I was taken, it was my first experience of using make-up to hide my illness. I thought I made myself look how I wanted: well. Later that night, I saw my mum looking at the picture and she had a sad expression on her face. She looked up at me and said “you look poorly, it’s your eyes”. I brushed it off, thinking I did a good job at hiding how I felt, but I recently looked at the picture and she was right, I looked poorly. It was all in my eyes, they looked glazed, almost like I wasn’t there. I guess the saying ‘eyes don’t lie’ is true. The picture, for those who don’t know me, I’m in the pink cardigan.

People had started to realise something was amiss, I was no longer seen out and about. For months, I was shrouded in the same four walls in a zombie like state. But, when I was seen people would ask “are you OK?” and all I could reply was “I’m being tested for Lupus”. I could see the confusion in their faces and I was already being asked “what’s that?” at that stage. My GP told me to prepare myself for a Lupus diagnosis, and at first, I didn’t. For a time, I would lay in bed and think “like hell I have an incurable illness”…that’s something people call denial. Due to my acute denial, I didn’t research it, so I didn’t have a solid answer to give.

The consultant turned to me, looking serious and said “you have Systemic Lupus Erythematosus”. I didn’t have an “oh shit, it IS Lupus” moment, I reacted like someone had told me I had a cold. People still asked how I was doing, but I could no longer say I was being tested for Lupus. Plus, I wanted to keep it private so I just said “I’m getting there” when I wasn’t ‘getting there’ at all.

The questioning was a regular occurrence, so I did something that started a domino effect that would eventually lead to this blog. I wrote on Facebook that I had been undergoing testing for Lupus and I had received a diagnosis. The “how’re you?” questions were replaced with “what is Lupus?”. By this time, I had researched it and I could give a clear answer. My explanation became a monologue, it sounded as if I had stood in front of a mirror, rehearsing it over and over. I would find myself explaining it to the same person multiple times.

I’d wonder why nobody could understand it and why they were so fascinated by it. Then it dawned on me, I’m describing a serious illness but I look healthy, they couldn’t fathom it. I decided it was out of the ordinary and that’s why it was so fascinating. It’s a fascinating illness, you could research it for several hours and still be uncovering the layers of it.

The idea of a blog would surface in my mind numerous times but fear stopped me. I was petrified of being judged for something beyond my control. I’ve realised people become very judgemental when it comes to topics they know very little about. However, I realised that if I wrote about it, would people learn? Would they understand my illness? I asked myself, do you really want to share your journey with Lupus? My instant thought was no, but if I did, it could make a difference. I downloaded WordPress but the app remained untouched for a couple of weeks.

Whilst watching TV, I spontaneously opened the app and tapped the sign up button. It asked what I’d like to call my blog, it took me less that 2 minutes to decide a name. I went with the first one that came into my mind: Me, Myself and Lupus. I didn’t take my blog seriously at first, after all, I was only treading the waters of blogging to see if I’d take a liking to it. I started writing my first blog post: My Diagnosis Story. It’s a post I regret, I don’t regret sharing it, it’s a post I would have wrote regardless. My diagnosis was a pivotal moment in my life, it’s a story that I could and should have put more effort into, but I didn’t and that’s what I regret. I published it and shared it on Twitter. I wasn’t ready to share with my Facebook friends.

I realised I liked writing, it proved to be threaputic to me. I started to take my blog seriously. I logged on and picked a theme, I chose a font, added a profile picture and chose a colour scheme. I learnt how to make banners and logos, I spent a few hours on the appearance. I wrote a few more posts, still only sharing to Twitter. During Lupus Awareness Month, I decided it was time to share my blog to Facebook. I was nervous, it’s easier to share the details of your illness with strangers, they don’t know you and they will never see you. I was blown away by the response and the amount of support I received regarding it. It propelled me into writing more.

Writing is now a big part of my life, a love I didn’t know I had. I love my corner of the internet, it’s my space to freely write what I like. Not every aspect of my illness is documented here, there’s some parts I keep private. Making my journey with Lupus a public one wasn’t an easy decision but it’s one I don’t regret.

The people who asked are no longer asking and they have a basic understanding. I have had thank you messages, it has made other sufferers realise they aren’t alone. I’ve had thank you messages from people who just wanted to learn. My blog has been shared by Lupus UK. It has helped and that’s exactly what it was set up for. Lupus still has very little awareness and it’s for that reason, I won’t stop sharing my journey. It’s a helter skelter of a journey, and you’re more than welcome to join me.

Rheumatology Appointment: 14-06-18.

I’m sat writing this post and wondering if I should even write it at all. It was a mundane appointment, I’m not saying that past appointments have been a joyous afternoon outing. But, so much had happened between my last appointment and this one. To recap: Azathioprine temporarily stopped due to low white cells, steroids, crippling anxiety due to steroids…you can see why I thought it would be at least a little bit interesting.

I sat in the little waiting room, an elderly lady looked at me in confusion. Then another lady entered and she also started looking at me. It happens a lot, they aren’t used to seeing a 23-year-old in a department typically used by older people. I can see them studying me, trying to figure out why I’m there. I could tell them why I’m there but seeing the confusion humours me whilst I wait.

The regular checks of weight and blood pressure were fine. However, my urine flagged up again, it did at my previous appointment. My consultant remembered this and asked if my water works were okay, I told him they were fine and he wrote something in my file (I can’t read his writing so I couldn’t tell you what). But, as he wrote he said “we need to keep an eye on you”. It was just a urine infection for which I have antibiotics for. I know urine infections are common in Lupus but it made me wonder (with him asking if my water works were the same) if frequent infections are an early symptom of kidney involvement. Just for the record: my kidneys are fine and performing perfectly well.

On this particular appointment, I felt awful. I was exhausted and sore in most of my joints, I told him but he didn’t say much but then again there isn’t much he could say. He’s very matter of fact that I have an illness that causes fatigue and pain. I also informed him that I recently had a butterfly rash, which he put down to the warmer weather we’ve recently had.

I asked “did my white cells drop because my body couldn’t handle the higher dose of Azathioprine?”. Interestingly, he nodded but also revealed that someone of my age should be able to handle 200mg of Azathioprine (my dose was 150mg). He also told me that when Lupus is active white blood cells tend to drop, so he believes it’s a mixture of the two. I’ve been curious if he would eventually try and increase the dose again but when I asked he said no and reminded me that we have to test different doses out to find the best one for me.

If everything remains stable for 6 weeks, my fortnightly blood tests can be moved to monthly. I next see my consultant in August, a little bit early but he’s going to Canada for a conference. He said he didn’t want to wait until he’s back because it would be too long in between appointments.

Anxiety: the side affects of steroids they don’t tell you about.

Steroids are a miracle medication but 3 weeks into taking them, I now realise why people despise being on them. They come with unwanted and unpleasant side affects, and side affects can appear at random times – even if you have been taking them for weeks to months. Over the weekend, I was plunged into the side affect nobody talks or warns you about: anxiety.

Before I go on, because this is important to note – a couple of years before being diagnosed with Lupus, I was diagnosed with anxiety. This is usually controlled by slow release medication (propranolol).

I lowered my dose from 15mg to 10mg on Friday 18th May. I thought of this as a happy occasion. To me, it meant my time on steroids was decreasing. The weekend was quickly passing but my anxiety levels were quickly heightening. At this point, I could handle it by distracting myself with various activities.

However, Monday ran an entirely different course than the weekend. My heart was racing, I had butterflies in my stomach and a feeling of impending doom. My breathing would become heavy at random points throughout the day. During these attacks, I couldn’t sit still, I paced the living room with my racing heart and I began to get hot and clammy. I guess you could say these were panic attacks and they happened regularly throughout the day. When I wasn’t in a panic attack, I sat with the churning feeling and thoughts that something terrible was going to happen. At night, these feelings and attacks increased. I would lay in bed to fall asleep and it would start again, I’d sit up like it was an involuntary action. I started to feel mentally tormented and at some point in an attack, I bit the inside of my cheek and drew blood.

Realising this wasn’t normal for me, I put 2+2 together. I grabbed my phone and asked on Twitter if anyone had experiences of anxiety whilst taking steroids. 14 people replied to me and each person had experienced it, some saying they can’t take steroids anymore because of it. Someone told me if you have a history of anxiety, you’re more than likely to experience this side affect. I laid back down and I could hear the faint mumbling of my brothers TV. I turned my fan off so I could hear it better, hearing and knowing my brother was in the next room made me feel safe enough to sleep.

Tuesday went the same as the previous day. But by now, I was almost hugging myself. Hearing the cars outside put me on edge and I jumped at the door being knocked on. I looked at my steroids and walked away, I couldn’t bare the thought of taking them, knowing they were the cause of intense anxiety. Mum came home from work and I finally told her how I felt, she remarked how I looked on edge and anxious. I hadn’t eaten a thing all day but I knew in a few hours I’ll be taking my usual meds so I needed food. I had to force the meal down. As my bath was running, I held my hand out and it was trembling. Whilst in the bath I decided it was best that I saw the doctor the next day. I went to bed, this time bringing my dog for comfort. He must of sensed something was amiss because he slowly crept up to me, gave me a shower of kisses and slept by my side all night. I don’t care what anyone says, dogs bring a level of comfort and calm that’s hard to replicate. Knowing I had to take the steroids at some point, I took them right before I fell asleep.

I went to the doctor and told him everything. He said, because of the timing of reducing the dose and the anxiety starting, it’s most likely the steroids. He explained that steroids can cause mental disturbances. I asked, because the dose being only 10mg, if I could just stop them that day. He said if I stopped them without weaning, I’d end up in hospital. He emailed my consultant for advice on what to do, listing everything I had said and also stating I have a history of anxiety. I had to leave and wait for the GP to call me with what my consultant replied. I came home and tried to distract myself with various activities but not a lot worked.

I received the call today with what my consultant suggests. The weaning process has been sped up, I have to continue taking 10mg for the rest of the week. I will then reduce down to 5mg for a further week and then I’ll be free of the wretched things. My consultant is positive I’ll return to my normal self after the weaning process.

Everyone knows how steroids can physically affect you, weight gain and puffy face etc. But, it’s almost like you have to discover these hidden side affects for yourself. Nobody talks or warns you about this side of steroids, which is what prompted this post. If someone is on steroids and going through this, I hope they stumble across this post and realise it’s common but hardly spoken about.

In previous posts, I remarked how I didn’t think steroids were bad. However, I would now describe them as mental poison. I have felt nothing but dread and fear. This experience has restored my fear in steroids, there’s not a chance in hell that I would take them again.

New Year, New Update.

I firstly would like to apologise for my lack of writing but Christmas, New Year and flares got in the way. And, if I’m honest I’ve suffered a bit of writing block, I have attempted at least 4 posts but failed to finish and post them. I would read them back and think “no, that’s too boring” or “that’s too long” and even “that’s just poorly written”, maybe I’m too self critical.

My last post was December, it covered my Rheumatology appointment and my dose of Azathioprine being increased from 100mg to 150mg. My blood tests had been moved from 3 monthly to 2 weekly. The results have all been fine and my body seems to be accepting the higher dose and as of the end of January, the blood tests have moved to once a month. I haven’t noticed a difference, I haven’t had any side affects but I also don’t feel better. However, and I have covered this before, Azathioprine can affect teeth and in January I had another wisdom tooth pulled out and 2 fillings…so I say I haven’t had any side affects but I can’t be too sure that the dental work needed was a result of the increased dose.

Although I say I don’t feel better, the dose was increased at a rather busy period of time…Christmas and New Year. I do like Christmas, I really do but the run up to it is quite literally exhausting and painful. There’s the shopping, which resulted in carrying multiple heavy bags that pulled on my joints – thinking back, I had to take naps after every shopping trip, they all floored me. Then there’s the wrapping, which seized my back and fingers up, just sitting at a table on a wooden chair caused mayhem to my body. And, finally getting out and visiting people with their gifts…an enjoyable time but exhausting. I spent New Year with my boyfriend and his family which was lovely but unfortunately by New Years day, the whole month had officially caught up with me and I was at the point of pain and exhaustion that I just wanted to curl up and cry. I had started flaring on Boxing Day, so to make it to New Years Day before feeling like that was quite the triumph. Despite the flaring, I had a lovely festive period with my nearest and dearest.

I haven’t got any expectations for 2018, I’m just taking it as it comes, which I’ve realised is the best thing to do when you have a chronic illness. I haven’t set any New Years resolutions, I never stick to them but I have made some slight changes. My first change is writing the symptoms I’ve had that day in a diary, I’m hoping it helps me to see a pattern in symptoms – which I can then tell my Rheumatologist, which in turn might help future treatment plans. Other recent changes include taking the supplement Evening Primrose and increasing my dose of Vitamin D. It was last year that my GP had told me to take it, but whilst in Boots, I found a higher strength of it and to my research, during winter you need a higher dose. Although, I will more than likely keep myself on this higher dose all year round.

I have recently had some new symptoms. In recent months I have a dull pain almost daily in my shoulder, usually my right but it often spreads to the left. I recently had a bout of what I presume was vertigo, I was sat eating and all of a sudden my hearing went, the room was spinning and I felt so hot…it honestly ruined my meal and I bloody love chilli. I had to go and lay down and that’s when I noticed my hands were trembling and I started to feel nauseous. The next new symptom prompted some worry (95% of the worry stemmed from my mother) but it’s pain in my back that can sometimes spread to my abdomen. When I pointed the location of the pain my mum said “that’s the kidney area, that’s concerning me!” and she even mentioned going to A&E when it was making me walk hunched over…but I refused due to my blood tests for kidney function being fine, I also tested my urine and it came back fine. I still get the pain daily, and since nothing is flagging up in tests, I think it’s just another Lupus thing that I’m just getting accustomed to. I can see why she worried though, kidney complications are rife with Lupus patients.

This past Sunday was hard for me, I found a new dog walk for my boyfriend and I, it was a woodland walk but I didn’t research it enough and it turned out to be rather long and quite hilly in places. We turned back when my left hip started to hurt and on the way back my knees and elbows started to hurt. I began to feel as if I was going to faint, a sensation that frightened me, it felt like my legs wouldn’t carry me further and that I would just keel over at any given point…away from home. That night I sat and held back tears because I took my mind back to when I was healthy and thought “Once upon a time, I would have finished that walk, we didn’t even make it to the half way point. I’m still paying for it now, my joints have sharp pain radiating through them, I ache all over and my head is pounding…not to mention the fatigue.

I shall leave this update here before it gets far too long and you lose interest. I will be putting my brain to use and thinking of new posts in the mean time.