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

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. 

Monday 17th October, 2016.

I slept bad last night, for once it’s not Lupus causing poor sleep. My top and bottom wisdom teeth have decided to start coming through. Well, I say start but they’ve actually been coming through for a while now, it’s only now and then it causes pain. I woke up every couple of hours, the longest I was awake was 2am-4am. I eventually drifted back off when my next dose of pain killers kicked in. I woke up about 7.30am and decided to just stay awake. Tossing and turning eventually got dull. 

Given my bad night sleep I’m pretty much exhausted. I mentioned in my last post that I was struggling with fatigue and I still am. I just can’t seem to shake it off. I wake up and my eyes are burning, it’s like my body is begging me to go back to sleep. I have zero motivation for anything and everything just feels like a massive task at the moment. Although, I did go shopping with my mum on Saturday, I wanted to get out from the four walls that constantly surround me. I finally saw Alice Through the Looking Glass, Alice in Wonderland is my all time favourite fairytale…if you’d class it as a fairytale? I love it, and the Mad Hatter, he’s my favourite.

Since my fatigue has been bad, so has my appetite. I discussed my eating with my mum on Saturday whilst sat in a cafe, we both agreed I don’t eat nearly as much as I should. I just never feel hungry or feel like eating, sometimes the thought of eating a meal feels more like a chore. That could be the fatigue coinciding – too tired to sit and eat a meal. There is days I don’t eat at all, sometimes it’s nearer 2 days before I will eat something. Sometimes it gets to about 7pm and I remember I haven’t eaten yet and I’ll just eat something because I know I need food. Most of my calorie intake comes from drinks. I definitely think fatigue and appetite are closely linked. It’s a viscous circle, it’s common sense that food gives you energy, but what if you have no energy to eat or the thought of food nauseates you?

The last few days I’ve had a dull ache in my back, it’s not a major or crippling pain. I’ve decided the ache is too low down to be associated with my kidneys (kidney problems are common in Lupus). I think it’s more muscular.

Despite alternating paracetamol and ibuprofen every two hours for my teeth I still have a niggling headache. Niggling in the sense that it’s up and down in severity. It seems to be holding off most of my other symptoms, however, my knees have a stopping and starting pain in them.

I’m starting to grow nervous about my next consultant appointment, I have an ever growing list of things to discuss with my doctor. One thing is my skin, I posted a question in a Lupus support group asking if anyone else has suffered bad skin since diagnosis, they have! I’m glad that I’m not the only person, I tried researching this on my own but I couldn’t find any solid answers or evidence that Lupus can cause bad skin. Obviously I will mention my headaches, usually that’s his first question anyway. I think I’m anxious at the thought of him trying me on a different treatment, the next one is Methotrexate – if you look it up, it sounds like a horrible drug and I’ve heard it’s more affective in the form of an injection. I also think I’m anxious because as I’m in the waiting room, it’s really the only time I sit and think “woah, this gig is actually for life”, that sounds silly I know, because I obviously know my diseases aren’t curable. I don’t usually give the whole ‘it’s not curable’ much thought, maybe that’s hope that one day it will be, I don’t know. Between my appointments, I’m constantly making a mental list of what’s got better or worse, what’s changed or what’s new and over the months, it just seems to grow. 

My hair, it’s started to fall out again. I’m not particularly worried about it, I have quite thick hair. You might look at the picture and think “it’s not that much” but it’s still disheartening to see it fall out as I brush it. It’s like a bitter reminder that my immune system is screwed up. I’m just clinging to the hope it stops or doesn’t get worse. 

I’m holding up pretty good all in all though, just struggling mostly with fatigue and my appetite. I’ve rambled enough and need to sort my medication out. Thanks for reading!

*I can see how many times this blog has been shared by family, friends and friends of friends. I can also see how many people have been on here from Facebook to read my posts, I just can’t see who you all are! So I’d like to say thank you to everyone who has read and shared my blog. I truly appreciate it, you’re helping raise awareness which is why I started this blog in the first place. Thank you so much! Much love to you all – Emily xo*