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!

My diagnosis, part 2.

I did a post about how I was diagnosed but it mainly covered how it physically affected me. I wanted to cover how receiving those diagnosis’ emotionally affected me and how I came to accept this new aspect of my life. I try my best to keep this blog candid, which means sometimes I have to push past the nervousness of revealing things I would generally keep to myself. When it comes to my illnesses, I don’t show any emotions such as anger, crying etc to anybody. It’s just something I prefer to keep to myself. 

I was prepared by my family, friends and my GP to receive a Lupus diagnosis. I went to my first Rheumatology appointment with no expectations of a diagnosis, I wasn’t naive and knew a diagnosis could take months to years. I didn’t have to wait, I was diagnosed in that first appointment. I wasn’t shocked and I wasn’t upset. When the doctor said I also have Antiphospholipid Syndrome and Sjogrens Syndrome, I was shocked. At no point was I told to prepare for that. My doctor was telling me all sorts “you need to get to a pharmacy as soon as you can, you need to call your Lupus nurse, if you fall pregnant you need to contact your OB immediately, do you understand?” I didn’t understand but I said I did. I stopped paying attention to him after he told me I had Antiphospholipid Syndrome, I’m not bothered about Sjogrens, it doesn’t massively affect me. I left his office with a piece of paper that I had to give the nurse and she took 5 tubes of blood. I remember looking at my dad and joking whilst having my blood taken “I have more illnesses than you now, I win”. I entered the hospital as Emily with a straight forward life with no complications and I left as Emily who was officially medically complex. 

I couldn’t get to a pharmacy, I left the hospital after 5pm and they were all closed. I was visiting family and friends on the weekend with my mum so my dad dropped us off at the train station. I read the leaflet my doctor gave me over and over. My mum asking me numerous times if I was okay. I always replied yes. She was on her phone, I think texting family about the appointment, she kept looking over at me though. I was quiet, trying to get my brain around how I now have 5 illnesses. The leaflet covered everything from kidney problems, lung problems, strokes, heart issues to how to look after yourself. I remember thinking “Oh I should probably stop smoking” and I did, I might have had the odd packet of cigarettes whilst in the process of stopping but I eventually did. 

When we arrived at my Aunts house, they were talking about it and again I was asked if I was okay and I said “yes, I’m relieved”. I wasn’t lying, I was okay and I was relieved, I was just shocked and still confused. The next day we went to a pharmacy and mum pointed at a medication box, she said it’s ideal to have one. I didn’t want one, I didn’t want to be stood in a pharmacy putting my first of many prescriptions through. I picked one up though, I got my medication and sorted them out in my medication box, she was right they are ideal. 

I wouldn’t say it affected me until a couple of months later, I didn’t realise but my family did. I was quiet, spending more time alone and I wasn’t my ‘happy’ self. I remember the first time I cried about it, it was probably 2 months after my diagnosis. I was in the bath and I just sobbed because I didn’t want this life, I questioned why me? I thought I must be a terrible person to derserve this. I wanted so desperately to see the old me, what would she be doing now? She would probably be out to dinner with friends in fits of laughter without a care in the world. That was probably the moment it hit me. 

We arrived at my second Rheumatology appointment but we were early so mum and I sat in the hospital cafe. She said she wanted to tell me something but asked me to not be offended and that it was recommended by the therapist at her work. She had ordered a ‘self help’ kind of CD. I told her I was fine and I didn’t need help. Which looking back was rude, she was trying to help me, she could obviously see me slipping into some sort of depressed state. 

Throughout all of this I was in limbo with my job, my employer kept sending me to an occupational health therapist. I knew I was about to lose my job, I just didn’t know when. That’s one thing that has affected me the most, not being able to do the job I truly love. It’s not to say that in the future I won’t be able to go back to it, but for now I can’t, it’s too physically demanding. I miss it, but how can you responsibly look after someone else when you’re unwell yourself? The whole process was really drawn out but earlier this year I was officially resigned on medical grounds. 

It took me a while to pull myself together from it all, I realised this can’t be changed, this is life now and I had to accept it and it was time to move on. I stumbled across a quote which I love:

“As you waste your breath complaining about life someone out there is breathing their last. Appreciate what you have. Be thankful and stop complaining.”

It put a lot of things into perspective for me and it made me think, if this experience has taught me anything it’s that we don’t appreciate the things or people we have. Dealing with Lupus and the other illnesses is hard physically and emotionally but there are people out there fighting a harder battle. I think it’s very easy to feel sorry for yourself and listen to what your mind tells you, but I now know I’m not a terrible person and I didn’t deserve this. 

So the best way to cope? Stay humble with what you have. Make sure to smile often and always keep your humour. 

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. 

A rough couple of days.

Yesterday morning I woke up with my usual symptoms: achiness, headache and feeling like I hadn’t slept at all. I had to go for a Flu Jab, apparently it’s now necessary I have one. My doctors surgery had been doing walk in flu jab clinics all week so by Friday it was quiet, I was in and out. Needles don’t bother me, I think it’s because as a child I had Immune Thrombocytopen Purpura (ITP) which required a lot and I mean a lot of blood tests. I guess it hardened me to them, so I didn’t bat an eyelid having to be jabbed.

Anyway back to the actual reasons for this post, as soon as I got home my joint pain started. It hasn’t been like that in a while, it was like electric shocks constantly going through my joints. I took my strong pain medication and went to bed to watch TV. The meds helped, not 100% (that’s how I know it’s bad) but they took the edge off the pain. Fast forward a few hours, my right cheek was hot so I got my phone out and brought the camera up, yep, the rash was starting.  


Apart from resting and taking pain meds there’s not much else I can do apart from wait it out. So, I did. By the time I wanted to sleep I couldn’t because I had chest pains, they started in my chest, went to my ribs and around my back. They got worse when laying down so I tried propping myself up, no relief what so ever. They were sharp pains but at the same time it felt like I had pressure on my chest. I was sure it was Costochondritis (inflammation of the cartilage that joins your ribs to your breastbone) but then again, I wasn’t because I’ve never had it go to my ribs and back like that. I was contemplating calling 111 (non emergency number) for some advice but I soon realised that when I tell them my illnesses I would be told to go straight to A&E. It’s not that I’m stubborn and wouldn’t go, I just knew it wasn’t an emergency. I’m learning that when you tell medical professionals that you have this and that wrong with you, they won’t touch you and would rather you go to a hospital or get in contact with your consultant. I decided the best thing was to just stay put, I took some codeine and it must of knocked me out because I can’t remember falling asleep. I do remember that when I last looked at the clock it was nearly 4am. It was a long painful night. 

When I woke up this morning, the pains were just in my chest and less severe so it was Costochondritis after all, I’m glad I didn’t call 111 and waste their time. The rash seems to have gone, touch wood! My joint pain settled too, not fully but it hasn’t been constant. I haven’t done much today, I didn’t want to aggrevate the pain that’s already there and make it worse. I’m completely exhausted from last night, I’m hoping I’ll sleep better tonight. I have just started to get a dull pain in my right side though, hopefully it’ll go soon. I wouldn’t say today has been great, I’ve still had pain but it’s definitely an improvement from yesterday.

Tomorrow is a new day, let’s hope it’s better! 

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.