I recently had one of my worst flares to date…

The start of August wasn’t great, my Lupus intensely flared up. I picked up a virus and due to that, it went haywire causing an array of issues. I’m late writing about this, it happened from Saturday the 5th of August to, well, now as I’m still recovering. You unfortunately don’t wake up one morning recovered from a flare, it can take days to weeks or even months to recover.

Friday the 4th, I was my usual self, maybe a little more fatigued than usual but nonetheless – nothing dramatically wrong. However, that night I slept dreadfully, I fell asleep around 3am but even then I woke every hour with a nauseous feeling. Every time I woke up, the sun was getting brighter and at around 8:30am I decided to just get up. I sat outside with a cup of tea and by 9:30am decided to try go back to sleep, as soon as I got into bed I was back up and vomiting. By 12pm I had vomited 3 times and had given up on sleep entirely.

Sunday the 6th. I woke up, from another sleepless night and feeling worse. This was the day my Lupus started to rear it’s ugly head. I was sat drinking water and I was almost certain I was about to faint, luckily I didn’t. But, I was shaking, my head was pounding, my joint pain was relentless and I started vomiting again. Just keeping my eyes open was exhausting and I couldn’t bare the thought of moving. I couldn’t even tell you what conversations I had and with who that day, I was so exhausted and in pain I can barley recall the day. What I can recall though, is it was the first time since my diagnosis that I rang out of hours for help. I was taking Tramadol and even though it dulled the pain, it wasn’t helpful and I was still suffering. They told me I had to see a doctor and on the way there I said to myself “I can’t be bothered with this illness anymore” because I genuinely didn’t have the energy to try and fight back. I wanted to curl in a ball, cry and honestly, disappear. Luckily, I was the only one in the waiting room so my wait was less than 5 minutes. The doctor took my temperature and it was raised, checked my ears and listened to my chest and they were clear. He checked my throat and he said it was red, he had me do a urine sample which was also clear and he checked my stomach which was sore as he pressed down on it. His diagnosis was a virus or the start of laryngitis, since the visit my throat hasn’t got worse so it was a virus all along. He couldn’t prescribe me anything stronger than Tramadol, so he prescribed me more to keep taking. After the checks and prescription were done he had a chat with me, he told me I need to get my Rheumatology appointment brought forward and told me that I really need to go on steroids. As soon as I heard the words “you need steroids but I can’t prescribe you them” I wanted the ground the swallow me. From the start of my diagnosis, I have been dead set against going on steroids unless I’m told I will die without them. I am yet to bring my Rheumatology appointment forward for the fear of being put on steroids.

This week has been rough. I’ve eaten next to nothing, my joints have been so sore and my fatigue just doesn’t seem to be improving – it feels like I’m at a dead end.
I try my very best to stay optimistic but this week has tested me, I’ve found it very difficult to take part in everyday activities and do basic tasks and I’ve felt extremely low in mood. I hate the thought of people thinking I’m snappy or horrible, I try my best to not be and it’s for those people I try my best to keep a smile on my face. My mood is slowly improving but I’m still struggling with a lot of pain, aches, headaches and nausea, but thankfully I haven’t vomited since Friday.

It’s the first viral infection I’ve had since being put on immune suppressants, which is good going as I have been on them since November. I was told I would more than likely constantly catch viruses and bugs. And, because of my lowered immune system it’s taking longer for me to shift it.

I can only hope that I start to properly improve this week. This has probably been my worst flare to date.

Misconceptions about Lupus.

Lupus is a poorly understood illness and when you're on the poorly understood territory, a few misconceptions happen. This is because the people who know about it are a minority compared to those who don't. The main point about this blog is to not only share my journey with Lupus but to also educate people about the illness. I have decided it's time to write a post about these ridiculous misconceptions, so here are 10 cleared!

1. You will NOT catch it.
It's not the common cold. It's impossible to catch it. Lupus is not a special strain of invincible bacteria, it's a majorly confused immune system. So next time you're in the company of a Lupus sufferer, shake their hand, or give them a friendly hug and maybe even share food. I can guarantee you'll leave as healthy as you came.

2. Lupus is NOT cancer.
I can see why people believe this one as chemotherapy is sometimes used to treat Lupus. But, you'll be glad to know, it's definitely not cancer.

3. Only women can get Lupus.
It is more common in women so maybe this is where the confusion has stemmed from but men can also suffer from Lupus.

4. Women with Lupus can't have children.
Although we will be classed as a high risk pregnancy and have an increased risk of miscarriage, women with Lupus can indeed carry to full term and have a healthy baby.

5. Lupus is easily diagnosed.
It's not a case of visiting your doctor and walking out an hour later with the diagnosis. There isn't a singular test to confirm Lupus so testing can go on for months to years with countless blood tests, questioning and physical examinations. It isn't a diagnosis given out easily and it's an extremely exhausting process to have to go through.

6. It's not real.
How could an imagery illness have the power to do so much damage? Everything we feel is real, Lupus is 100% real. Ask the scientists who research it.

7. We will get better.
There is research going on but there's very little funding for Lupus research so unless the scientists have a eureka moment, we will remain incurable.

8. Lupus is uncommon.
The NHS website even states this. Although most of the people you know are probably healthy, Lupus is not as uncommon as you'd think. Don't get me wrong, it's not the most common illness to have but in my opinion it's not as uncommon as they make out.

9. Lupus is deadly.
20 years ago only 40% of Lupus patients were expected to live more than 3 years following a diagnosis. Although we can still experience complications, we now have a normal life expectancy.

10. We brought Lupus on ourselves.
False. Although many believe Lupus is brought on by certain lifestyle choices, this is not true. We haven't brought it on ourselves. If this was the case, don't you think there would be more people with it and better funded research?

I think I can speak on behalf of most Lupus sufferers that if you ever want to know anything, just ask us. We'd rather you get the correct information and who better to ask than someone who lives with the illness?

There’s been better days. Diary entry: Thursday 20th July.

I've been dealing with a headache for around 4 days now. It seems to change in intensity throughout the day, going from what I'd call mild to intense and sometimes it's just a pressure headache – like my brain is expanding or someone has my head in a vice. I've talked about those headaches in past posts, I call them Red Queen headaches because the Red Queen has a massive head and that's what it feels like.

This past week has been a struggle with fatigue. I'm always tired but the last few days I've been asking myself "is 7pm really to early to go to bed?". My evenings have literally been spent clock watching. I mean, I really should just go to bed when I feel I need to. My body clock is already all over the place so I don't want to mess it up more. Either way I can't win, the end result will always be the same: tired.

I woke up today feeling generally okay, well, as best as I could but things went downhill pretty quickly. I'd say within in an hour or two of waking up I started flaring. This is what I dislike the most about this illness – it changes with no warning, you think "today feels like it's going to be alright" then the next thing you know, you're curled up in a ball on the sofa wondering where your 'alright' day went.

It started with a throbbing pain in my right knee, the throb was accompanied with a sharp pain. Then it quickly went to both elbows, the only pain I really get in my elbows is a sharp pain and the pain travels down my forearm like electric shocks. It's very typical of my knees and elbows to hurt, it's the joints my Lupus affects the most. Pain in my shoulders is less common, but today I had the worst pain in my right shoulder. It was a burning sensation mixed with a sharp pain, it started so suddenly and out of nowhere (like nearly everything this illness throws at you). It was the burning sensation that made it unbearable, fortunately the sensation didn't last long but the sharp pain decided to stay for the day. It's also sending a dull ache down my upper arm. So today, my full right arm has been affected – not so helpful when you're right handed!

I was sitting waiting to see if any of the pain would subside but nope. It wasn't letting up and I couldn't sit in pain any longer so today has been a codeine day, which I'm sure my headache will thank me for later. And by that I mean, I'll probably wake up with a blistering headache tomorrow, what's new? I'm due another dose in an hour and a half and it can't come quick enough. It's helping but not fully, it's just taking the edge off it all.

It still mind boggles me how any part of my body will start hurting, it's as quick as turning on a switch. Some parts of my body hurt briefly, like the soles of my feet but then it'll move to my legs or fingers. Although I'm writing about my joints, because those are the areas that have consistently hurt, nearly my whole body has been affected today. It just gets tiresome when there seems to be no break from pain.

I spent the day curled up on the sofa with
a blanket and my dogs in a codeine haze, having little cat naps and drinking tea…all whilst trying to get my head around the new season of Orphan Black…that's not a show you should watch whilst on codeine.

What a day! There's always tomorrow. As always, thank you for reading xo

Lupus and being abroad: diary entry 5. Would I recommend it?

I’m back in little old England, I landed at 5am this morning after the most dreadful flight – a toddler screaming for the majority of a 4 and half hour flight isn’t what anyone wants. I started travelling last night at 10pm Turkish time (8pm British time), so it was a long night of waiting around and what seemed like endless security checks at Dalaman Airport. 

I was awake for just over 24 hours, which is a risk in itself with already having chronic fatigue, you never know if forcing yourself to stay conscious for such a prolonged period of time will cause a flare up. For me, it usually does, I’m currently feeling extremely fatigued, aching, headache and I keep getting waves of nausea. 

Before I get to the whole “would I recommend putting yourself in blazing heat with a illness that hates heat” discussion I thought I’d recap on my final two days.

Thursday: Wonderful, despite the temperature reaching a firey 40+° and me being on codeine for joint pain in the knees. I was under a parasol for the whole day and yes, probably completely oblivious to the fact the temperature felt like fire around me due to being on codiene. It was our last day on Coco Beach, we stayed on the beach until the Garson no longer took orders. I honestly couldn’t tell it was that hot but again, codeine was clouding my mind. On the evening we walked around Icmeler, catching up with friends from a previous year of holidaying. It was just a lovely day. I took tramadol that evening and slept better than I did the whole holiday. 

Coco Beach.

Final dip in the sea at Coco.

Friday: In contrast to Thursday, this was a horrible day. It was 45°, that’s what the barman told us at around 5pm so during the afternoon it was probably hotter. My day started later, I got to the private jetty at 10:30am. I couldn’t cope. I was in and out of the sea like a yo-yo, as soon as I was out, I needed to go back in. I felt like I was going to hit the deck at any moment. We went for lunch and sat in the shade with cold drinks, that seemed to bring me back around. As soon as we got back to the jetty, I deteriorated again. It’s like a sense of being restless because you just don’t know how to gain control of the symptoms you’re experiencing. In the end I left the jetty and went back to the room and laid on the bed for about 30 minutes, I took a shower and then started packing. There’s absolutely no way I could of sat in the sun any longer. As you know, by nighttime I was embarking on my long journey home. It was an extremely long and tiresome day. 

Would I recommend it? Yes. Do it, go on holiday. Lupus strips us of so many things in our lives. We put up with so much, we’re beaten down by our own bodies daily – why shouldn’t you be rewarded for being a total badass and fighting yourself daily? 

Yes, there will be bad days, but don’t feel guilty for needing to go rest in your room or sit in the shade. If I’m honest, I spent the majority of my holiday in the shade, I didn’t put myself in the sun for prolonged periods of time, if you do that then you are asking for trouble. I understand some Lupus patients suffer a considerable amount in the sun and their rashes turn to big blisters, it’s a no-brainer on why they avoid holidaying abroad. I do suffer in the sun, it does bring me out in rashes but not the extreme scale that it blisters. If you react moderately well in the sun, try it. It’s 14 days out of 365, you have nothing to lose by trying it. So what if I flared? I was going to flare anyway with the damp weather in England. Instead, I chose to flare in the sun and a waiter brought an ice cold drink to my lounger. You see, that’s the point, we flare in cold weather and we flare in hot weather…we can’t win. 

Some people are probably still wondering why I did it to myself, I technically brought bad days upon myself. Why? Why did you make yourself suffer? And the only answer I have for that is I refuse to let this illness control every aspect of my life. I will never bow down to it. And I certainly will not let it frighten me, not now and not ever. 

Lupus and being abroad: diary entry 2 (19/6/17)

I wouldn’t say today was a write off, but it wasn’t the best day. I didn’t expect my first “bad” day to be on my third day here, I expected it to be at least 5-6 days in. But, I guess that’s Lupus to T – unpredictable. 

What confuses me the most is, today is cooler than yesterday, there’s more of a breeze. I mean, yesterday Lupus had its moments but it seemed to clear after an hour or so – especially after cooling off in the sea. Not today, I can’t shift it. It’s a feeling I struggle to describe (I say that a lot, don’t I?). My eyesight goes fuzzy and I get lightheaded, sometimes I think I’m about to faint if I don’t sit or lay down. My head starts to pound or feels like it’s swelling. It’s generally just a very uncomfortable/unwell feeling, which sucks whilst you’re trying to have enjoy your holiday. 

I did find myself some shade to sit in whilst having a cold drink, that seemed to help a little. During my shaded rest, the sun crept behind the trees which shaded my sun lounger so I went back to lay there and continued reading. All I’ve really done today is read and drink very cold drinks with ice in – I can actually enjoy a drink with ice in as I’m practically Raynauds Phenomenon free for 2 weeks. Saying that, I haven’t dipped in the pool all that much today because as soon as I get in I’m covered in goosebumps, but it is a very cold pool, but it hasn’t aggregated my Raynauds at all. 

I’m very tired but again, it’s a mix of the heat, general Lupus and I’m probably still recovering from the travelling. I haven’t suffered too much from joint pain, it’s still there especially in my knees and elbows – as I’m writing this it’s starting in my left wrist. Just like at home, it comes and goes when it pleases. I’m still regularly taking paracetamol and ibuprofen, I don’t really want to touch codeine in the day time. I don’t want to be in a haze in high heats or around water. I’ll take it on an evening before going to sleep. I’m still chugging water like it’s going out of fashion but my favourite drink today has proven to be Orange Fanta, it’s a bit more refreshing than plain water. 

I seem to be taking the sun well on my poor feet, I’ve been sat with my beach cover up over them as they feel like there on fire! My ears too, apparently the sun has taken a liking to those. Don’t worry, I won’t be returning to the UK with just tanned feet and ears – the rest of me is tanning as well. 

I’m back in the hotel room now, with the air conditioning. I’m probably going to lay on the bed for the rest of the afternoon to try make me feel a bit more human. Mum and I will probably venture back out in the early evening.

I’ll be sure to keep this updated as much as I can. Thank you for reading! 

Rheumatology appointment 2-02-17.

I had my routine appointment with my Rheumatologist today. There’s honestly not much to talk about but I thought I’d write about it anyway since I’ve wrote about the others. Sometimes the appointments are really short and sweet because there’s not much going on or any major changes. Today was short and sweet. 

My weight is fine, I’ve lost a little more weight since my last appointment. This seems to be the case at every appointment, I’m starting to think their scales are broken. My blood pressure is fine, my consultant said it’s “wonderful”, it’s 103/73 which I thought was low but I guess it’s wonderful. 

I have recently been slightly concerned that something was going wrong with my kidneys, I’ve had a dull ache/pain in my back. I think it’s just in my mind that kidney involvement is very common in Lupus. All tests that would show any kidney involvement are fine, so my mind is at rest. I guess it’s just a new pain I have only just met. It’s not constant, sometimes it’s there for a few hours, sometimes a day or two. It’s weird, but then again so is Lupus. 

All my blood results are fine, there was probably a lot of them for him to look at since I’ve been having them weekly and now fortnightly. I didn’t get any blood taken at this appointment due to them being fine and having them done so consistently. I actually imagine the pathology department receiving my blood and eye rolling “this girl again?!”.

He asked me the usual questions headaches? Joint pain? Dry eyes? I told him my headaches aren’t as severe or as consistent on the new medication but I do have one today. I also told him I still get joint pain but I think a lot of that can be blamed on the damp weather, and oddly my right eye has been drier than the left. 

I see him again in 4 months time and we have agreed to stay on my current treatment plan of 100mg of Azathioprine and 200mg of Hydroxychloroquine.

I ended the appointment saying “I think this is it now, I don’t think I will get better than this” which might seem like a negative thing to say but I genuinely don’t think I will. He nodded and asked “do you think?” I think his nod confirmed that what I said was right. 

Please, treat me like you did before. 

I don’t want to hear that Yoga or eating an avocado a day cured your friends Lupus. I don’t want to hear what vitamins to take, you are not my doctor and I will not listen to you. There is no tips that can ‘cure’ my Lupus. 

Yes, I am bored of telling you what Lupus is. I’m not offended that you asked – I like that people ask so they can understand but I’m bored of telling you what it is when I’ve already told you countless times. I understand it’s complicated but I tell you what it is in the simplest way I can. 

“My joints hurt too, especially after the gym” let me guess 2 paracetamol and an ibuprofen takes that pain right away? “I’m tired too” I’m also guessing a nap takes that tiredness away? Please don’t compare your minor ailments to me, they are fixable. If your well friend said “my joints hurt” you wouldn’t tell them “yeah well mine do too!” please don’t make me feel guilty for something beyond my control. Naps don’t take my tiredness away and I need prescription only painkillers for my joint pain. 

“You sleep a lot” yes, I do. Thanks for noticing and making me feel lazy. I sleep a lot because I need to. I’m plagued by fatigue, it never goes away. I can sleep for days, no really I can, I’ve once slept for a record time of up to 17 hours…you know why? Because I physically couldn’t stay awake. 

“Do you seriously need those all those tablets?” woah, can I see your medical degree? Of course I need them. I don’t take them for fun, they are essentially keeping me alive so I can be stood here telling you why I need them. 

“Are you better now?” nope. I’m not better, next week I won’t be better, next month I won’t be better and next year I won’t be better. You know why? Lupus isn’t curable and I’ve told you that before. I’d rather you just ask me how I’m doing. 

“I don’t want to complain to you, you have enough going on” just because I have Lupus doesn’t mean you can’t tell me about any issues you have going on. I will try my best to help you out, just like I used to do. 

Please, treat me like you did before I got sick. That girl you knew, she’s still there. She still has the same likes and interests, you don’t need to walk on egg shells around me and you won’t hurt me if you touch me. The worst thing you can do is treat me differently, don’t treat me like the frail sick girl because I’m not. Please don’t assume I’m better because you’ve seen me laugh or smile, and don’t assume you know how I feel because I look perfectly well. 

“What can I do to help you?” you can treat me exactly how you did before. 

My diagnosis.

I finally made the decision to put my story out there, that’s if people even want to read it. I find stories like this interesting so hopefully my story will interest someone out there. I hope to help people learn about Lupus as I have unfortunately come to realise people don’t understand this disease. 

I guess that’s a good place to start, what is Lupus? Lupus is an auto-immune disease. The immune system is meant to attack foreign bodies to keep you as healthy as you possibly can be. Whereas patients with Lupus have what I call a ‘confused immune system’ their immune systems go haywire and start attacking healthy tissue and organs.

Now that you have some idea of what the disease is let’s go back to June 2015 and I will begin telling you my diagnosis story. I will try to keep this as straight forward as I can.

I remember waking up early to get a train to a passport interview and my right cheek was incredibly itchy. I checked it in the mirror and I had a rash from the top of my cheek bone to my chin. I thought nothing of it and took an antihistamine and carried on with my day. As the day went by my rash got worse and I started to feel unwell, I had some aches in my legs and pains in my knees. I was supposed to go shopping with a friend after the interview but she could see I didn’t feel great and we headed back to the train station. Once there, I suddenly felt worse the aches were all over my body, it felt like I had been dipped in concrete. The knee pain was now in my elbows too. I was now exhausted, my friend encouraged me to see an out of hours GP. The doctor put my symptoms down to a virus but she didn’t recognise the rash. I went home to sleep it off. The next couple of days were spent sleeping long hours. 

I fell asleep in the afternoon and was woken up some point the next afternoon from a phonecall off my mother, she was checking in on how I was doing. I admitted I felt no better, in fact my symptoms had gotten worse and my rash was still there. She was alarmed to hear I’d just woken up and told me to go see my usual GP. So, I did but my usual doctor was off so I saw the new doctor who again, told me I had a virus. I went home to, you guessed it, sleep some more. 

I woke up the following day still feeling the same and my rash was still intact. At the time I worked nightshifts (8pm-8am) with vulnerable adults, I was worried about the rash, was it infectious? I didn’t know because no doctor had told me otherwise. I tried to get the night off but I couldn’t. I slowly got ready for work. I was in agony and I was feeling a level of exhaustion I didn’t know existed. 

I lasted 3 hours of that shift, I now had a new symptom – a migraine. I had to walk from work to town to get a taxi, I began crying. I was crying because at this point I realised I didn’t have a virus and I felt like something was seriously wrong. I got home and sat by the toilet waiting to vomit from the excruciating pain in my head and all over my body, my cheek felt like it was on fire and my body couldn’t decide if it was hot or cold. I was on my own and I admit, I was scared. 

Fed up of being told I had a virus I did what everyone tells you not to do, I put my symptoms into Google. Expecting the usual Google diagnosis to come up in the search results but it didn’t. Instead I looked at the screen shellshocked that the only search results coming up was my fathers illness. Lupus. I tried to call my mother, no answer. So I text her something pretty simple “I think I might have Lupus”. She called me the next day and agreed and told me she started believing I had it a few days ago and was planning to sit me down that day to tell me. 

She came with me to the doctors the next day. Unimpressed by previous doctors I saw another one as my usual GP was still off. I said to the doctor that I keep being told I have a virus and she told me “viruses can linger for quite a while”. True, they can but I knew I didn’t have one. That’s where mum came in, I didn’t feel like I was being taken seriously. Mum told the doctor what my dad has, he also has Antiphospholipid Syndrome (also known as APS or Hughes Syndrome) which is blood clotting disease. I left with an unfit to work note and appointments for numerous tests. 

Some tests would take a week to come back others 4. The first to come back was my TFT (thyroid function test) it was borderline underactive. A few weeks later I had to go back to the doctors to get another unfit to work note and I needed something stronger than paracetamol and ibuprofen. I didn’t feel well enough to get on public transport so I got my dad to take me, mum came along too. They both came into the room, I got stronger pain meds and re-signed off work. We asked if the auto-immunity tests were back, the doctor (still not my usual GP) said “yes and I think they were fine, I’ll double check for you”. I remember sitting there watching his face and he stared at his screen with a shocked look. Fine? Not at all. They were off the scale. Was I referred to a specialist? No. The tests had to be re-taken. 

I got a phonecall from my doctor, it was my most recent TFT results my thyroid was now underactive and I had to start medication immediately. My auto-immunity tests came back and they were still off the scale. I was then referred to a consultant of Rheumatology, I requested to be referred to my dads consultant. It was a no brainer, my dad has been under his care for 10+ years. I waited from September-November to see him, doing nothing at all, being signed off work, sleeping and watching TV. 

Finally November came around and I saw my consultant. I felt like I was talking to a doctor who was taking me seriously and really paying attention to what I was saying. I was taken into a small room to have a physical examination to check my joints, when he touched my feet he asked “are they always cold and purple?” At no point with any doctor did I think to bring my cold purple hands and feet up because for as long as I can remember they’ve always been like that. He diagnosed me then and there with Raynaud’s phenomenon. I got re-dressed and went back to his office. On his desk was a Lupus information leaflet. Here we go I thought. 

He told me I had Systemic Lupus Erythematosus, I wasn’t shocked I was preparing myself for that diagnosis. What shocked me was he then carried on “you have secondary Antiphospholipid Syndrome and secondary Sjögren’s Syndrome” . I had inherited my dads illnesses and then some. I entered his room with just a diagnosis of Hypothyroidism and left with 3 other diseases. None are curable. 

I sometimes wish I could go back to May 2015, where I was fine. I was working, hanging out with friends and being active. Lupus has took a lot from me, my job, some friends and sometimes I think it took me. I often miss who I used to be, it feels like an old friend I haven’t seen in a while. On the other hand it has taught me a lot, my true friends, I now understand how my dad felt all those years ago when I thought he was dramatic (I really did, sorry dad). It’s taught me that you should never take good health for granted because one day your life could be tipped upside down, just like mine. Everyday I make sure to remind myself there is people in the world fighting worse battles and to always be grateful.

I’m forever thankful for my amazing family and friends for their support and love. You are the best people in my life and I couldn’t of got through that time in my life without you. Thank you. 

If you made it this far, thank you for reading. I plan to keep updating this blog with my Lupus journey. 

*This was a light version of my diagnosis story, the major points are left in but if I did it in full detail you would be reading it for days.*