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 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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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.

APS – what is that?!

When people ask me what illnesses I have, I see their faces go into a confused state when I get to “Antiphospholipid Syndrome” so I thought, why not write blog post about it? I’ll warn you, this post is about to become a biology lesson. APS is the illness I struggled to get my head around, mainly because I found countless horror stories whilst researching it, so I didn’t want to continue reading about it. For a while, I stopped reading into it because I was convinced that one day it would kill me. However, when you’re facing a life with an illness that can’t be cured you have to bite the bullet and research it no matter how much it terrifies you. 

Antiphospholipid Syndrome (APS) is also known as Hughes Syndrome. It is a disorder of the immune system that causes an increased risk of blood clots. 

This means sufferers of APS are at a bigger risk of developing deep vein thrombosis (DVT) which is self explanatory – a blood clot that develops in the deep veins and it’s usually in the leg. Not only are we at a risk of DVTs but also pulmonary embolisms (PE). A PE is a blockage in the pulmonary artery, the blood vessel that carries blood from the heart to the lungs. The usual cause of the blockage is a blood clot, and it’s usually a DVT that has traveled from your leg to your lung. Pulmonary embolisms can be life threatening because they can prevent blood reaching your lungs. That’s not all about blood clots, after all we are talking about having messed up blood here…we are at risk of a blood clot on the brain, which brings me to a little story: 

My rheumatologist was concerned that my consistent headaches were caused by mini blood clots on my brain that fizzled out on their own. He was debating starting me on Warfarin (anticoagulant) as it would alleviate my headaches. Warfarin is a horrible drug and you don’t mess around with it, and quite frankly I don’t trust myself with it. I told him I’d prefer to see if they improve with time and my current treatment before we try something drastic like that.

To treat a blood clot you will be given anticoagulant, such as warfarin or heparin. If a ‘normal’ person develops a clot they’d typically be on warfarin for around 6 months. If I develop a clot, that’s it, I’m on the warfarin train for life. Once your blood clot is treated, you don’t always walk away with a clean bill of health. Sometimes the clots leave irreversible damage such as lung scaring. Take my father for example, he has APS as his primary illness and has suffered 3 pulmonary embolisms. He has been left with asthmatic type symptoms and uses an inhaler, certain things can trigger him to wheeze and cough. 

In case you thought this illness just caused blood clots, it doesn’t. Sufferers are also at risk of heart attacks, strokes and women are at risk of reoccurring miscarriages. Although with the correct treatment during pregnancy women can have a successful pregnancy, it’s estimated 80% of women following a treatment plan will have a successful pregnancy. Despite that fact, I can’t help but wonder how much heartbreak some women will have gone through before having a successful one. 

I was and still am incredibly lucky to have a great consultant. He is also my fathers consultant so with symptoms, blood results and family history I was diagnosed very quickly. For other people, it’s not straight forward and getting a diagnosis of APS can be a battle, it’s a poorly understood disease and due to its nature of symptoms can be mistaken for multiple sclerosis. The symptoms of APS are also similar to Lupus. I’m going to use my father and I as an example here. Lupus is my primary illness and APS is my secondary illness. APS is my fathers primary illness and Lupus is his secondary illness. However, we show almost identical symptoms. 

There is blood tests designed to show abnormal antiphospholipid antibodies that increase the risk of blood clots. These blood tests are: 

  • Anticardiolipin antibodies (aCL)
  • Lupus anticoagulant (LA)
  • Anti-beta2-glycoprotein-1 (anti-B2GP1)

In order to receive a diagnosis you must have two abnormal blood test results but the tests must have a 12 week gap. 

The treatment I’m currently on is simple, one Aspirin a day to keep the clots away! I hope it stays that way too. This so far has been my hardest blog post to write. I’ve been flicking from website to website to ensure the information I’m giving is correct. Like stated above, this is the one illness that terrifies me. Growing up I’ve seen my dad have horrific nose bleeds, sometimes we’ve even had to put a plastic bag under him to catch the blood that is the consistency of water. I’ve seen the toilet and sink covered in his blood from bleeds, and I’ve seen him in hospital countless times. One time, his INR was so low that the anticoagulants sent his blood the other way (too thin) and he was rushed into hospital with internal bleeding. He battles to keep his INR at a stable level, when his blood is too thick he takes painful heparin injections. That is the reality of APS and why I keep this illness in the back of my mind. I hope I never have to come face to face with it.

Thank you for reading, I hope it gives you more of an understanding of the horrible disease that is Antiphospholipid Syndrome. 

Tuesday 4th October. 

It’s been a relatively productive day. Productive for me anyway. I cleaned the house, got my nails done and walked my dog. You’re probably thinking “what’s so great about that, I do that stuff every day”. I usually struggle to do tasks one after the other, saying that I didn’t do it all one after another, I took breaks. In fact, my day didn’t start until this afternoon. 

My mornings are typically slow. I stay in bed for about an hour, check my messages, social media and the news to see what’s happening in this crazy world. Once out of bed I make a drink and sit curled up in my dressing gown on the sofa. By this point I’ve usually established what kind of day it will be. I woke with a headache today and usual aches and pains in my joints but not severe enough to stop me in my tracks. So I decided today, I will get stuff done!

I cleaned the house bit by bit, taking a break in between rooms. If I didn’t take those breaks I wouldn’t have been able to do the other parts of my day. 

I called the salon to make a nail appointment, luckily she could fit me in this afternoon. I didn’t get anything fancy, just a gel manicure to help strengthen my nails. It was nice getting out, even if it was just to my local salon. 

Once home, I sat down and had a rest. I decided since I feel up to it I’d take my dog out for a walk. Today is my favourite type of weather, it’s not cold but it’s not hot and there’s a slight bit of wind. This weather is my favourite because I can be outdoors and not be majorly affected by the weather. I enjoy walking, if I could I’d walk miles but I can’t, so on days like today I really appreciate it when I’m out – especially if it’s my favourite weather too. 

I’m back home now, in my comfortable clothes. I’m going to make a hot chocolate and rest for the evening. 

Although I’m now tired, getting sore and have a still have a headache, I feel happy and satisfied with my day. I can go to sleep tonight knowing that for me, it was a productive and successful day. 

Walking Theo.