Autumn & Antibiotics!

I managed 12 whole days of Autumn before getting ‘normal person poorly’. I originally thought it was a cold but on the morning of my usual blood tests and flu jab, I coughed up some blood, which oddly didn’t alarm me but I thought it was probably best to see the doctor, considering my circumstances of PPH (piss poor health). And, it turns out, you can’t get the flu jab if you have a fever, I need to go back and get that at some point next week.

I had white spots on my tonsils so the doctor believed I had the start of tonsillitis but they weren’t inflamed enough to start antibiotics that day. But, again, due to my piss poor health, he didn’t want to leave me without any so he gave me a delayed prescription in case I worsened over the weekend. He also said the blood could have been because I’m on anticoagulants and the force of coughing brought some blood up.

A few days later I started to feel dizzy, unbalanced and my right ear was muffled with pain in it that traveled down my neck. And, then my nose turned into the Niagara Falls, which miraculously dried up at night so I couldn’t breathe, turning my mouth into the Sahara Desert as I slept. My cough got worse and I’m sorry to tell you, I was coughing up green stuff. I was walking around smelling of Vicks and Olbas oil, there was no possibility of losing me, you just had to follow the strong stench of menthol. Which I personally couldn’t smell but I was told it was pretty potent. After a few more days of the above ailments, I decided it was probably in my best interest to get the antibiotics.

I read the leaflet and it stated they would help my chest if there was an infection, which I think there was. After a couple of days my throat started to feel better and my chest was clearing up, which is why I think there was some sort of infection. I thankfully finished them Tuesday, I say thankfully because I hate antibiotics, they always make me feel sick.

I do believe it started as a basic cold but because my immune system is so low, my body couldn’t fight it so it turned into an infection. And, of course, I flared – it was inevitable. The flare started with my fatigue levels heightening, all I wanted to do was lay on the sofa, watch rubbish TV and sleep. My muscles started to hurt and ache, my whole body felt like a lead weight, the muscle aches and fatigue mixed together made the smallest tasks feel immense. The headaches began to intensify and they lasted days, no amount of paracetamol and ibuprofen helped to clear them. And then of course, the mother of all my symptoms, the joint pain. It was mostly concentrated in my knees and elbows but I did have pain in the small joints like my fingers and toes. I also started with back pain, which isn’t a symptom I get frequently, it’s a pain that seems to come and go. I had pain in my shoulders, a dull pain but sometimes sharp.

The infections are cleared but it takes longer for flares to die down. I’m still struggling with joint pain, headaches that linger for days and my back is still sore. My fatigue levels are still pretty high but I also haven’t been sleeping very well, I’m on average falling asleep around 2am, which is very frustrating.

But, at least I’m no longer on the antibiotics, because like I said, I bloody hate them.

Advertisements

Medication: 2018.

My medication has proved to be an interest to many people. Lupus needs to be controlled, if it isn’t then it would have a field day attacking all my precious organs and healthy tissue. I’ve noticed that Lupus patients discuss their medication with each other but rarely speak of it to others. This is not what every Lupus patient takes, treatment plans are unique to the patient.

Hydroxychloroquine / 200mg / Once a day: This is for Lupus. It’s hard to find a Lupus patient who hasn’t had experience with this medication. It’s the medication mostly everyone is prescribed when first diagnosed. It’s awful at first too, I had intense nausea for weeks and it can take up to 12 weeks before you feel it taking affect. I find it good for keeping rashes down, I initially started on 400mg but my Lupus needed something stronger, especially for pain.

Azathioprine / 125mg / Once a day: This is for Lupus. Azathioprine is the medication that suppresses my immune system, it’s the reason why I have to be extra vigilant around people who have something infectious, my immune system isn’t strong enough to fight things off. The correct medical term would be ‘immune compromised’. This is medication that buggered up my white cells and neutrophils earlier this year, resulting in an unpleasant experience with steroids (I’d have to be on my death bed to accept them again). It was only when I was taken off them for my white cells to recover that I realised that these dodgy coloured pills do in fact work a charm. Azathioprine is the reason I get reguar blood tests because it can affect your liver and evidently your white cell and neutrophil count.

Apixaban / 5mg / Once a day: This is for Antiphospholipid Syndrome. Once upon a time I took Aspirin to lower my risk of blood clots. However, my consultant believes I was having blood clots on my brain that ‘fizzled’ out on their own and that was the cause of my intense headaches. He decided to trial me on this, which is an anticoagulant – like Warfarin but it doesn’t require weekly INR testing. It lowers my risk of blood clots, strokes and heart attacks. My headaches have been reduced and they aren’t as intense. It was decided that Apixaban would permanently replace Aspirin. However, if you cut yourself, you know about it.

Carbomer eye gel / twice a day and when needed: This is for Sjogrens Syndrome. There isn’t much to say about it, it’s a gel I put in my eyes to stop them feeling dry. I’m one of those weirdos who can touch their eyeballs so I’ve had no issues with it. It works and I also use it if I have pain in my eyes which is usually a sharp pain or burning sensation.

Levothyroxine / 50 micrograms / Once a day: This is for Hypothyroidism. It gives me the hormone my thyroid is too lazy to produce itself. My thyroid is just slightly under active, hence the small dose. I haven’t felt different on this mediation but again, that’s probably due to my thyroid only being slightly under active.

Propranolol / 80mg / Once a day: This is for anxiety. This was the first medication I was regularly prescribed. I was diagnosed with anxiety years before Lupus but since developing Lupus it has heightened. It gets particularly worse on the days my pain and fatigue are at a high level. It works and if I miss a dose I start to feel anxious about the silliest things, like someone knocking on the door.

Lymecycline / 408mg / Once a day: This is for my skin. Since I’ve had Lupus my skin has decided to resemble the skin of a teenager. It works to an extent, it definitely tries but you couldn’t solely rely on it, you definitely need a good skin care routine to back it up.

Lansoprazole / 30mg / Once a day: This is a stomach tablet. All it does is protect my stomach due to taking so much medication. I can’t miss this tablet because I’d end up with horrendous acid.

I’m prescribed two pain medications, which I can request at any time from my doctor:

Codiene 30mg: I take 60mg at a time. Oddly, a lot of people can’t take codiene due to it hurting their stomachs. It does give me headaches so if I already have a headache, I won’t touch it because it’ll turn it into a migraine. But, I do find it to be helpful for my pain.

Tramadol: I very rarely take Tramadol, I can’t remember the last time I requested it. I tend to use it if I have a headache and can’t take Codiene. I don’t find it very helpful for pain. But, it is good for taking the edge off migraines.

At least one of these tablets give me vivid dreams and nightmares but I’m not 100% sure who to put the blame on but I think it could be Hydroxychloroquine or Propranolol. And, yes, I have forgotten to take them before, especially in the early days of my diagnosis. I now use a ‘med organiser’, which I have wrote about before. I also have an alarm set at 7pm everyday to remind me.

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.

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.

Heatwave, it’s not me, it’s Lupus.

My body is no longer designed to cope in high temperatures. I’m basically a real life vampire. I know what you’re thinking “you coped Turkey”, which is semi true, because some days I didn’t. The difference is, in Turkey I spent 90% of my time submerged in cold water.

At first, like everyone, I was overjoyed to see the sun. We have a roofed decking area with comfortable garden furniture, besides my bed, it’s my favourite place to sit. I grabbed my book and sat there for 20 minutes before retreating back inside declaring “it burns”. I told you, I’m a real life vampire. Except when I got up, my vision went blurry and I was dizzy. Which, in fairness, is a regular symptom of mine, it’s just happens more in the sun.

Because I have a stubborn streak, everyday I’ve been giving sitting outside ‘another’ go. Each day ends the same: I notice rashes, it burns and itches my skin, I get dizzy and blurry vision and try to get to the sofa without falling. The only time I can sit outside in the heatwave somewhat comfortably is after 5pm or if I’m somewhere in the shade.

I would be lucky if rashes, dizziness and blurry vision were my only symptoms to show during the heatwave. My fatigue levels have shot up, I’m getting regular headaches, I ache from head to toe and have joint pain. The joint pain is particularly vile in my elbows and knees, my most commonly affected joints. My hands are starting to feel stiff.

Yesterday I went shopping. A big mistake even though I was in shops for the majority of the time. I walked around with legs that felt weak, like they were struggling to hold me up. My joint pain was bad in my knees and my headache was bad, it felt as if I had been hit in the back of the head with a pan.

Since the heatwave started, every morning has been rough. I wake up feeling like a lead weight and I have to lay in bed until I feel a little stronger. It feels like I’m walking on sand and my brain can’t function properly. It takes me hours to come around and even then, I don’t fully come around.

Today, I woke up after a bad nights sleep and I struggled to stand up for longer than a minute. I felt faint, my legs felt like they were going to give way. My brain feels cloudy, my head and eyes hurt. My elbows and knees have pain shooting through them. I have pain in my lower back and sides, and so far, the dizziness and blurry vision is happening every time I stand up.

I’m beyond over the lovely weather because I’m struggling immensely to cope in it. Not everyone who complains about the weather is being a ‘Debbie Downer’, not everyone can cope in hot weather. And having limited resources to cool yourself down makes it harder. I honestly feel worse in England with the heat than I did abroad in Turkey.

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.