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?

Does Lupus hang over you like a dark cloud?

People have asked me “do you ever feel depressed?” and I reply “no”. The months that followed my diagnosis, my GP frequently asked “how are your moods?” or “do you feel low?”. Truthfully, in the beginning, I did feel low, but isn’t that expected? I was diagnosed with 5 auto-immune diseases – none curable. I still told him “no”. My low mood was not depression. I used to think to myself are people waiting for me to crack? Now, I realise that people just cannot fathom it happening to them and their first thought is “I’d get depressed”

When I sit back and think about it, there’s absolutely no reason for me to depressed, I can’t think of one thing in my life that would justify me being depressed. You might be thinking “is she serious?!” but, yes I’m serious. I have the most wonderful people around me who catch me when I fall. I have a roof over my head, food, water, clothes and I’m not laid in a hospital bed clinging onto my life. Yes, I have bad days – days I ask a God I don’t believe in “why me? What did I do wrong?” and days where I think “this is it, today is the day it finishes me off”. But, I get through those days with the help of my family and friends and I stand back up, ready to face it again. So, no, there’s no reason for me to depressed. 

People ask me “are you okay?” and I reply “yes” each time I’m asked. Sometimes it’s visibly clear that I’m not okay, but my answer will always be yes. I think that’s due to stubbornness, if I say “no, I’m not”, in my head I’ve let it win for that day. I might not look like I’m winning, but I am. 

Does Lupus hang over me like a dark cloud? No. No it does not. I treat Lupus like a game, hence my ‘winning’ reference above. So far, I’m doing great, I’m in the lead. You have to be one step ahead of it, but every so often it’ll gain a lead and push me off the board completely, but I will always climb back up and laugh at it as I regain my winning position. It’s a tough game but it’s a game I have to play, a game with no end. In my mind, I’ve painted a picture of what Lupus looks like. It’s huge, both by height and width, black and cloudy figure. I guess I did that so I could have a visual of what I was up against. I can safely say, I’m not scared of it or what it’s potential is. 

If I let this horrible black figure hang over me, I’d be screwed. I will never cower behind it, but I’ll always be stood in front of it, waiting for it to make it’s next move on the board. 

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 3. (20/6/17-21/6/17)

I spent yesterday at my favourite beach, it wasn’t until we left the beach that we noticed the temperature was 37. It was bearable due to the sea breeze, in all honesty I was shocked to find that was the temperature. I spent some time in sea, which definitely helps symptoms. I also had a little nap on the lounger…I just can’t help it. It’s so easy to fall asleep on them, especially with chronic fatigue. It was a long day, we were out of the hotel grounds for 13 hours but remarkably I was OK. It wasn’t until I’d showered and got ready for bed that I started feeling the exhaustion and pains. I slept fairly well, mainly because the air con was off all night. Aircon plays with my Raynauds, I think it’s because it’s a high level of cold air constantly flowing out. But, I did keep waking up at random times – I have horrible sleep issues at home too so this is nothing out of the ordinary. 

I woke up today with a sore back, I’m not entirely sure what I’ve done. I haven’t done all that much to provoke it. I think it’s just a Lupus thing. It’s not a sharp pain, it’s more off a dull ache. I notice it more when I start walking around or change positions. I’m taking paracetamol and ibuprofen regularly, which you’d think would help my headache but it’s not letting up. It feels like someone has punched me in the back of the head. It started last night as we were walking back from the beach. 

It’s hot here today and there’s barley any breeze and when there is, it’s almost a warm breeze. I tried sitting in the sun but it provoked unwanted symptoms; headache worsening, itchy skin, dizziness and increasing my fatigue. So, I opted for the shade with a book today. It’s a feeling I struggle to describe, it almost feels like I’m not there because the heat zaps everything out of me. I couldn’t check the weather on my phone because I didn’t have wifi on the beach but, I’d say it was easily in the 40s. I fell asleep (again) on the lounger, it’s no surprise, I’ve done it everyday since being here. The sun and heat makes it a lot harder to fight the fatigue and I seem to just fall asleep at the flick of a switch, falling asleep to the sound of waves is utterly wonderful though. I was brought around a bit by a sugary cup of tea…could that sound anymore British?! 

Not everyday will be fine because it seems Lupus’ greatest enemy is the sun. It’s like it doesn’t want you to have the enjoyment that comes with it, sitting in the sun should be one of the easiest things to do but Lupus makes it extremely difficult.

This holiday is a test to see how I cope as it’s my first since diagnosis and with being medicated. I definitely think Hydroxy is keeping pesky rashes away, that’s the only thing I’ve found with Hydroxy, it’s good for keeping my rashes down. I guess having these bad symptoms surrounded by the sea and the beautiful mountains of Turkey is better than having symptoms at home confined to the same 4 walls all day. 

I tried to add pictures to this post but the wifi isn’t strong enough to upload. I’ll try again in my next post. As always, thank you for reading. 

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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! 

Lupus and being abroad: day 1 (17/6/17)

Hello from beautiful Turkey! The weather today has been glorious, reaching around 33°c. This is my first post on how I’m surviving in this heat, because as most of you know, Lupus and heat don’t tend to mix well. 

I arrived at my hotel at 4:30am, although it was 2am UK time…and I had 45 minutes sleep because I’m apparently an overgrown excitable child. The flight was, meh, it was okay. I don’t mind flying, in fact I love take off but that’s about it, after an hour I start to get sore and extremely uncomfortable. Mix that with screaming children and a screaming need for nicotine (I’m an ex-smoker and I’m probably too addicted to my e-cigarette) it’s just not a fun situation to be in. But, needs must if you want to end up in a beautiful place like this…

7am today. I watched the prettiest sunrise.

So, to deal with the intense heat? Water, and I mean, chug so much water down that you think you might explode. Surround yourself in water, get in that sea and pool…although I found the pool pretty cold so I preferred the sea. This hotel has two pools so I’m planning on seeing how the other is tomorrow. 

I also applied factor 50 suncream regularly, topped with a factor 30 facial sunscream and sun protective balm for my lips and nose…if you ever need suncream, come to me. 

I took painkillers often as well, however they haven’t stopped my headache which I think is a combination of fatigue, heat and generally just having a disease that gives the gift of headaches regularly. My left ankle started to seize up later this afternoon, mum thinks it could be a side affect of the glamorous flight stockings I had to wear. They are so tight and the tighest point is at the ankle. Since I also have Antiphospholipid Syndrome it’s crucial I wear them as flying is a big risk factor for me developing a DVT. 

Overall, I’m pretty happy with how I managed my first day. There was some points of the day I thought “this is too hot, if I don’t cool down asap, I think I’ll die on this lounger or just disintegrate into it”. I’m not naive and I expect some days to be tough in the heat, but I’ll carry on with what I’m doing because for the most part, it works. 

I don’t plan to update this blog everyday with how it’s going because I think it would eventually get tiresome for you to read. However, I am planning a to write more than just this and if a day doesn’t go quite how I like, I’ll let you all know. 

I have to get a shower now because my hair and body is full of salt, but I’ll leave you with some pictures of my day! 

Still alive…didn’t disintegrate into my lounger.

View from one of my many loungers today!
Another view…from another lounger!

Rheumatology appointment | 1-6-17.

Hello! It’s been a while since I’ve updated you all – I’ve said it before but I haven’t really had any ideas regarding posts. That being said, I’m going on holiday later this month and I’m planning to write posts whilst I’m there. They will mainly be concerning how I’m handling the heat, as many of you have probably guessed that Lupus and heat typically don’t mix very well. But, I’ll be damned if Lupus stops me going on holiday! 

 I had my check up with my consultant earlier this month. There was a 4-month gap between this visit and my previous appointment, which is fine but Lupus is so unpredictable and changes daily that it’s near impossible to remember and tell him all symptoms I experience in between visits. I tend to highlight the most bothersome and most occurring symptoms to discuss. 

All usual checks (those being: weight, blood pressure and urine) were absolutely fine. One of my first points to make was my headaches are staring to re-occurr again except there is a slight change, sometimes they aren’t particularly painful. They feel like a pressure – I describe it as feeling like the Red Queen from Alice in Wonderland with her huge head because it feels like my head is just swelling and could burst at any given moment. He asked how long this sort of headache lasted and I said it could be anything from an hour to a day. Aside from my Red Queen headaches, I do still get my ‘usual’ headaches that can be anything from mind to excruciating. A few weeks ago I had a migraine that lasted several days. 

My next point was sleep, it’s becoming an issue. I told him I typically fall asleep fine, my issue is staying asleep…which made me look like a liar because I couldn’t fall asleep last night, I eventually went to sleep at 9am this morning for a grand total of 4 hours. He asked if there was a reason why I struggle to stay asleep, sometimes it’s pain but others there’s absolutely no reason for me to keep awakening. I told him it’s odd because I’m chronically fatigued, to which he assured me it’s a common issue with Lupus patients. We discussed treatments but he told me he would be hesitant to prescribe them because of the addictive nature of the medication, which I fully understand and accept. I admitted to sometimes using over the counter remedies, which he was fine with. 

My final topic was holiday advice, at first he said don’t go…but then he gave me actual advice – things I already knew but I thought it would be best to throw it in there in case he had any other tips. I have to get a hat, wear factor 50 suncream and apply it often, drink a lot of water and to try Turkish watermelon…doctors orders, I’ll have to get myself the biggest wedge of watermelon I can find! 

I didn’t have any blood taken at this appointment, I get it tested so often by my GP that it would have been a waste of time. All my blood tests are fine and I’m still tolerating the medication. He said although I’m still experiencing symptoms, it’s in my best interest to stay on my current treatment plan. It came across to me as a kind way of telling me this is as good as it’ll get. I’m at a point where I fully understand I probably won’t ever be symptom free, I just want it under control as best as it can be. 

My appointments with my consultant have gone from 4 monthly to 6 monthly and that’s good news to me.