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.

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 4.

This post is going to be a mixture of how I’ve been the last few days. Like I said in a previous post, I’ve had fairly equal days in terms of being good and bad. However, I have noticed in the recent few days my days have almost been split, I’m fairly good in the morning and I quickly decline by afternoon. The temperature is rising as the days go on and the breeze is slowly withering away to nothing. There usually is a breeze in the morning hours but it seems as it gets to 1pm it suddenly stops, and returns at late afternoon/sunset. This means by afternoon I’m typically under the parasol or cooling off in the water. 

I have noticed I’m affected more when my head is directly in the sun. Which is where a sun hat comes in handy, the downside is the hat makes my head sweat and can make me feel worse, it almost gives a sense of over heating. 

I thought I was doing well on the rash side but on a morning walk earlier this week I developed one. I was in Turkey in 2015, I was in limbo with getting a diagnosis and I developed a rash on my chest, just next to my shoulder. The rash I developed this earlier this week was in the exact same place. At first it didn’t bother me, in fact I hadn’t spotted it, my mother did whilst we were in the sea. But, as the day wore on, it started to itch and it became hot. The heat from it could of just been my skin in general as my shoulders were slightly red but my Lupus rashes are generally hot to touch. The rash was slightly raised, it lasted longer than I anticipated, a day and a half. I kept applying factor 50 and Nivea Soft cream. I always find Nivea Soft soothes Lupus rashes, I didn’t think ahead to pack it but luckily the little shop in the hotel sells it. 

The rash on my left shoulder/chest.

I thought my sleep issues would have settled during the holiday, with being in the sun and around the sea but they haven’t. I usually sleep on my right side but last night I couldn’t lay on it. I had pain in my right hip, like stated, I sleep on my right side so I kept reverting back to it and being awoken by pain. It wasn’t just last night that brought poor sleep, most nights have been restless, just like at home. I woke up feeling very achy and a bit out of sorts so I had a late start, I just sat in bed munching on biscuits (Milka biscuits are delightful, they’d be even nicer with a brew though) and strolling through the internet.  

As the holiday goes on I am starting to struggle more. I’m becoming increasingly fatigued and starting to have an ‘unwell’ feeling, again, it’s a feeling I can’t perfectly describe. But after all, I’m no longer designed to be in the sun, I’m not meant to be sat in it, people must honestly think I’m mad for being here and in a way I totally am mad but you can’t say I haven’t tried it. Mum overheard a woman on the beach yesterday saying she declared Lupus on her travel insurance – so it’s not just me putting myself through blazing heat and putting myself at risk of dire symptoms. Maybe madness is a trait we develop when diagnosed? If I flare massively when I return to British soil then so be it. I’d rather flare with decent wifi, my dogs and Netflix than here, when I’m meant to be enjoying myself…if I do flare as soon as I land at least Lupus has the decency to hold fire until the holiday was over. 

I’ve reached the second week, all in all I think I’ve done well. Yes, there’s been bad days but there’s also been fairly good days. I’m still enjoying myself, which is the whole point of the holiday. But, I must go because I’m bloody red hot and need to get into the sea. 

The wifi is co-operating with me today so here is some pictures! 

Breakfast yesterday: a waffle with Nutella, fresh strawberries and ice cream. At least there was fruit, right?
A little feline friend I made on the beach last week.
Mum and I one evening last week.
The view I had writing my previous post.

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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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. 

Thursday 13th October, 2016. 

Not a great day, but not all bad. I just don’t have any energy, despite sleeping long and well last night. I kept waking up this morning but each time my eyes were heavy and stung so I just went back to sleep. I eventually got up at 9:30am because someone was knocking at my door. I curled up on the sofa after that. It takes me awhile to come around, when I say awhile I mean at least an hour or two. 

I was very achy this morning, all I wanted to do was lay flat. I’m still achy but I find that sometimes if I just walk around my house now and then it helps. Usually when I make a cup of tea in the morning I’ll pace around the kitchen a few times whilst the kettle is boiling. I’m also that incredibly irritating person that everybody cringes at – I click any part of my body I can. I’m not sure why but sometimes it helps, for a short while anyway. 

I have a headache, it’s one of those headaches that keeps dying down then coming back. I’m sure I mutter those words to myself or others at least once a day “I have a headache”. My skin is really itchy today, mainly my back and arms, it drives me insane. A couple of times today I’ve gone really warm, it’s odd because it lasts for about 2 minutes then my temperature feels normal. My right elbow keeps threatening to hurt, I say threaten because it’s minor joint pain not full blown. 
So, mostly what’s bothering me today is fatigue. To put it simple I feel as you would if you felt run down. I miss waking up and feeling completely refreshed from a nights sleep. 

I’m not sure what the rest of the day holds, at the time I’m writing this it’s 14:46 and Lupus is unpredictable so I can’t say it’ll stay the same. I’ll probably take a nap, I say nap but what I mean is I’ll probably fall asleep for hours longer than I planned. 

Thanks for reading.

Sunday 18th September. 

It’s a bad day. I knew as soon as I woke up. My legs and shoulders were aching massively, my head was throbbing and I had joint pain. When you wake up like this, it’s rare you will pick up throughout the day, in fact you’ll more than likely just deteriorate. Which I did. 

It was my friends sons 1st Birthday today, I missed it. I feel pretty lousy about it too, I know what you’re thinking “it’s a 1st Birthday, the kid won’t even remember” but that’s not my point, my point is that due to this illness I miss a lot and sometimes it sucks. Today was sunny, or so I hear, I didn’t go outside to know if it was or not. So if I did go to the party I probably would have suffered more anyway. It’s a catch 22 kind of thing. 

I got my morning wash hours after awakening. Grim, I know, but I had to muster up the energy to do it. I brushed my teeth and afterwards sat back on my bed for around 20 minutes. Then I had to cleanse, tone and moisturise my face. And yes, I HAD to that because this disease has given me a complextion that resembles a pepperoni pizza or a dot to dot drawing.

I have spent my day in my room, doing absolutely nothing productive. I’ve been watching my family go about their day full of energy, oh how I envy that. It’s days like this I wonder what it feels like to have a body full of energy to do one task after the other with no breaks in between. I’ve been tired all day, that’s nothing new to me but today I’m extra tired. There’s no reason for me to be extra tired I slept for over 13 hours last night. No, I didn’t oversleep, that’s just Lupus. 

I’ve felt down today, again I have no reason to feel down. I just do. I don’t really feel like talking, I just want to lay in my bed where it’s quiet, warm and comfortable. Actually, when I think about it I do have a reason and it’s because I’m in pain. Everyone gets down when they feel like crap.

My appetite has been next to none, I’ve grazed on crisps, terrible I know. I did make soup this evening but I didn’t even have half of it. I just don’t feel hungry and there’s nothing I particularly crave eating. 

My headache dulled down earlier this afternoon but it’s been there all day. Now it’s built back up, and it’s going to my eyes. I hope it’s not the start of a migraine.

My joint pain has been moving around, at some points it was in my knees then elbows and so on. Currently it’s in my left elbow, right knee, my right thigh and my lower back is starting to hurt and ache. My jaw even aches, yep, my jaw. Just by writing this post my right wrist is starting to hurt and ache, so are my fingers. 

I’ve felt dizzy today too, everytime I stand up I get lightheaded and my vision goes a little funny. I got a warm bath earlier this evening in the hopes it would help my aches and pains but I got too lightheaded and had to get out after 10 minutes. 

I’m struggling to concentrate, whilst eating my soup I zoned out, you know when you stare at one object for a prolonged length of time and people wave their hands or click their fingers at you? I did that. I’ve done it several times today. I think it’s tiredness that causes the lack of concentration. If this post makes no sense or lacks grammar, you know why. 

I’m currently psyching myself up to get my teeth brushed and to get through the whole cleanse, tone and moisturise shenanigan again. I’ll get round to doing that in about an hour or longer. Until then, I’m going to lay in bed watching The Big Bang Theory and take some pain meds. 

Tomorrow is a new day, hopefully it’s a better day. I want to get some fresh air, hopefully take my dog out for a short walk, luckily he’s tiny so I don’t have to endure walks that are miles long. Maybe even FaceTime my friend overseas or pick my new glasses up. 

Goodnight, thanks for taking the time to read.