2 years later…

For a while I’ve been wondering if I should restart this blog or not. My weird online diary, weird in the sense that diaries are usually private but mine was open for anyone to read. For the most part it was completely candid, I didn’t withhold any information, there had been times where I left details out because I didn’t feel comfortable sharing, but for the most part it was honest. My reasoning for the blog was to raise awareness for Lupus after realising nobody understood or often hadn’t heard of Lupus. I’m not a natural born writer by all means but I throughly enjoyed it and it proved helpful. I could go back to posts and pin point when a new symptom started, when a flare started, when my last flare started, medication changes – the list goes on. There’s a 2 year gap where nothing was recorded and I can’t remember it.

Various life events stopped me writing. One thing happened after another and it wasn’t a priority for me and for once it wasn’t lupus related…crazy I know! I’ll be honest, when life did calm down, I didn’t even think about this blog despite the app being on my phone. It wasn’t part of my life or routine anymore. The wind must have changed directions because recently I have been thinking about my odd little corner of the internet and the more I thought of it I realised I actually miss it. So here I am writing a very overdue post.

If you can’t remember me or have somehow just stumbled across this blog, hi, I’m Emily. I have lupus and a few other auto immune diseases scattered around my body. As a collective I call them Lupus and friends.

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Medication

I don’t think medication has changed but I’ll recap in case it has or just in case you’re interested – you’d be surprised how interested chronically unwell people are with each others medication. Do you remember sticker books as a kid? And you’d say to a friend “I have that one!”, it’s a bit like that but with pills…ahh how life changes.

• Mycophenolate this is for Lupus, this is the medicine that suppresses my immune system – in layman terms it essentially makes my immune system really naff so lupus can’t attack my body. It also makes me susceptible to colds, viruses and infections. Out of all immune suppressing medications I have been on – I have been the most stable on Mycophenolate which is ironic because my rheumatologist told me he didn’t think it was effective for lupus.
• Hydroxychloroquine again, this is for lupus. It’s a mouthful so us lupies call it Hydroxy. Fun fact: it’s actually a medication used to treat and prevent malaria but for some reason it helps lupus. I have been on Hydroxy from the day I was diagnosed. It’s typically the first treatment a rheumatologist prescribes and if it doesn’t help immune suppressants might be introduced along side it. It might sound familiar because Donald Trump made national headlines when he believed it would stop people contracting Covid if they took it. It didn’t and it still doesn’t. Really good for Lupus though.
• Apixaban these are blood thinning meds, not for lupus but one of its close friends: Antiphospholipid Syndrome. I have a post on what Antiphospholipid Syndrome is lurking around somewhere, I’ll link it at the bottom of this post. This medication thins my blood to lower my risk of blood clots. It does have the unpleasant side affect of bleeding the equivalent of the River Nile with the smallest cut and it also makes me bruise easily.
• Naproxen for pain. It’s a prescription ibuprofen. I was taken off it for a while because they thought I had a stomach ulcer – I didn’t and I eventually figured out the cause of my gastro issues myself which the doctors agreed was correct. Anyway, they recently put me back on it after some issues with my hip. They really do think ibuprofen will do the Lords work. I don’t rate it myself. I didn’t notice a difference when they took me off it and haven’t noticed a difference being back on it.
• Amitriptyline this both for pain and to help sleep. The dose was recently increased due to the hip pain mentioned above. I think it somewhat helped my sleep but haven’t noticed a huge difference with pain.
• Sertraline usually used for depression but I was put on Sertraline when I was taking steroids because steroids unfortunately completely mess my head up. My GP decided to keep me on Sertraline after the steroid treatment for an existing anxiety problem. Lupus has definitely made my anxiety and occasional periods of low mood worse – I haven’t spoke to a single person with lupus whose mental health has not been affected.
• Ferrous Fumarate usually known simply as iron tablets. Apparently I’m slightly anaemic these days.
• Lanszoprazole this is a medication reduces stomach acid. I take it to protect my stomach from all the meds I take.
• Levothyroxine this is for an under active thyroid. It gives me the hormone my thyroid doesn’t make.
• Propranolol for anxiety. I only take them when I feel anxious.
• Carbomer Eye Gel self explanatory really. I use the eye drops for another disease called Sjogren’s Syndrome – which I’m almost certain is a misdiagnosis. Sjogren’s is a disease that affects the parts of the body that produce fluid. Now the reason I believe this is a misdiagnosis is because the only symptoms I have is dry eyes and mouth and I’m sure lupus can cause both of those symptoms.

When I see it typed out like that it doesn’t seem much but most of the medication is what I call ‘multiples’ because I take multiple of them. Mycophenolate for example is 3 a day.

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Symptoms

I remember seeing a video of Selena Gomez cooking and her hands visibly shaking and she apologised for it and stated it was due to her lupus. I sent it to my mum and said I would hate to have that symptom. I think you can guess where this is going. I got the lupus hand shakes. But, it’s not just shakes, oh no…it’s shakes, pain, weakness and swelling. It has quickly became my most hated symptom for one reason: it’s my first visible symptom. Sure, rashes are visible but thankfully for me the facial rash isn’t an everyday symptom for me. The hand issues however are a visible symptom and people have noticed it.

I first noticed it getting my nails done but I thought nothing of it. Then I’d noticed it after preparing food, washing my hair, grooming my dogs, holding my dogs…I noticed that after I did pretty much anything my hands would shake. Tasks that had repetitive movements, like food prep would cause the swelling along with the shakes. Now eating a meal causes them to swell and shake. And I hate it. I hate that people can see it. I hate that slowly this ‘invisible’ disease is uncloaking itself.

I still get headaches. I still have multiple in a week but I’m pretty good at handling them. Well, I’m not sure if I’m actually handling them well or if it’s just such a common occurrence that I’m used to them, if that makes sense.

Hip pain is somewhat new too, I’d say it’s developed within the last couple of years. It mostly happens when I sleep but sometimes it can start for no apparent reason. It’s a difficult pain to describe it’s a bit like an intense ache, an ache that’s so deep it’s almost to the bone. It is only the right hip that is affected.

I still have pain in the usual areas like my shoulders, elbows, wrists and knees…at this point it’s easier to sing the Head, Shoulders, Knees and Toes nursery rhyme. I have always said my elbows and knees were the areas that caused the most pain and this is still true but my hands are firmly in this category too. Have you noticed it’s areas of the body that are most used? You can’t avoid moving your elbows, knees or avoid using your hands. That’s what makes living with it that bit harder.

Muscle pain still happens. It usually occurs in my thighs. It’s what I imagine being stabbed feels like. You know when you get a pain and you clench your teeth and breathe in? Yeah that’s the affect lupus muscle pain has.

Fatigue never changes. Somedays it’s severe, I can wake up from a 10 hour nights sleep and go back to sleep for 2+ hours. Somedays I can get through the day without a nap. It varies but it’s always there.

UTI’s in the past year have been the bane of my life. I’ve had so many urine infections. I’d get rid of one and then a month or sometimes even weeks later I’d have another. Back in July my GP referred me for a scan of my kidneys and urinary tract. UTI’s are very common in lupus but lupus also loves to attack a kidney. My GP just wants to rule out if anything else is causing them and if my kidneys are ok. But, I’m yet to receive the scan appointment, I should probably chase that up.

All in all lupus is still a brute and keeps throwing curveballs at me but I reckon I’m still winning.

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Life

I have been quite lucky in 2023. My highlight of the year has already happened. I’m a big Harry Styles fan and I was incredibly lucky to get tickets – they were like gold dust. I don’t get to do things like that often with having lupus and experiences like that take a huge toll on me but I’d do it again in a heartbeat.

I also went to see Formula 1 at Silverstone! Who’d have thought that me, who has her nose in a book when Seb watches it, would go see it? Me either. I ended up really enjoying it. Seb has been away a lot with work this year so spending that time with him, watching something he loves was just brilliant and lovely. Like the concert, it took it out of me but it was worth it.

We also went on our annual canal boat holiday which I spent mostly reading! For Christmas 2022 I got a Kindle from Seb and it was like he gave me the gift of reading again. I was struggling to hold books with my hand issues so I hadn’t been reading much and reading is one thing I truly love to do. That was I until I got the Kindle! So I sat there on my camp chair as Seb meandered us down the canal, reading with my dogs around me.

A view from one of our spots for the night.

A lunch stop – I remember telling him I think I had UTI before I took this too. Lupus doesn’t take a holiday 😂

The Tiny Mafia. My 3 little comforts. ❤️

As you can see I’ve had really good year. But I do want to reiterate that the concert, the F1 and the holiday took a toll on me. I don’t want people to think I can do things like that without repercussions from lupus. I pay for it massively afterwards.

I have never seen my ankles and feet be as swollen as they were from the concert.

I was in bed early in pain after the F1 and I was taking pill killers and sitting down through most of it. We took chairs with us for this reason. I’m also very well looked after by Seb, he can get protective of me when it comes to lupus.

I was in bed early most nights on the holiday and also relied heavily on my pain medication.

Everything I do comes with a price but I would rather have the experience of something than not. This year has been unusually busy in terms of doing things, my life is never that exciting – I usually don’t do anything and if I do it’s certainly not the things I’ve done this year.

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If you got this far thank you for reading! I really enjoyed writing for my blog again. I’ll definitely be back.

Until next time,

Emily xo

*Link to my post about Antiphospholipid Syndrome.

Update, Isolation and Rheumatology appointment.

Hello. It’s a bit mad out there isn’t it?

I got a letter from the NHS (and multiple text messages) stating I’m high risk of severe infection if I contract the corona virus. There’s social distancing, isolation and then there’s shielding. I come under shielding which means I cannot leave my house under any circumstances and nobody can enter (unless they live with me, obviously). There was quite a large list of instructions for me to follow which I won’t bore you with. I will say there was one upside to the list: I can open a window. What a treat.

At first I hated it, it was a case of being told I can’t go out that made me want to go out. It’s like being told you can’t push the big red button. I’m generally an introverted person so mentally this isn’t a struggle for me. There has been occasions where I’ve wanted to go out for fresh air and a walk with my dogs to stretch my legs properly. Today is my 39th day in the house, the longer it goes on, the less I hate it – the opposite of how many are feeling.

One thing I’m struggling with is not seeing my boyfriend. We missed each other’s birthdays, we had a holiday booked for the 13th April which was cancelled. We FaceTime and text a lot but it’s still a crappy situation all round. I just want to see him but I can’t and I hate that.

I’ve been filling time by reading, watching Netflix and helping mum paint the kitchen – I did a small bit but I class that as helping. Oh, I almost forgot, I got Sims 4 because I can go outside on that.

I turned 25 on the 23rd. Despite my birthday being spent in lockdown, I felt so much love from everyone. My mum made a vegetarian buffet which was lovely, it was nice to eat the same meal as my family for once. Although my dad and brother kept holding up food asking what’s in it, I’m sure they believe they will die if they have a meal without meat. The whole day was just chilled and it was sunny so that was a bonus!

I recently had a new symptom. Well, I say new, it was just a more severe version of an already existing symptom. It was a dull but persistent pain in my right calf. Nothing I did helped, I tried Tiger Balm, hot Epsom baths and painkillers. Even resting it on something soft hurt so you can imagine standing and walking was painful. Everyone I told suddenly went into panic asking if it was swollen, red or hot because what I was feeling was classic DVT symptoms. Thankfully, there was no swelling, heat or redness and after 3 or 4 days it finally subsided.

I’ve had some days where my fatigue is heightened and I’ve had to go for a sleep in the day time, something I curse myself for doing every time I do it. It makes me feel lazy.

My headaches have been more regular but I’m managing to more or less keep on top of them with a mixture of painkillers.

My joint pain has been around the same levels. Some days it’s bad and some days it’s more manageable. It’s in its usual places: shoulders, elbows, knees and wrist/hand. More recently I’ve had some in my feet, which isn’t unusual but it’s not the most common place for my joint pain.

I surprisingly had a rash on my face a couple of weeks ago, I say surprisingly because Hydroxychloroquine does really well to keep my rashes down. Thankfully it didn’t last long.

I’m not 100% sure how I am on the anaemia side of things. Next month should be my last on iron tablets. I haven’t had any blood tests done since February. My GP wants some doing next month and he’s going to send a nurse to the house. I tried to tell him it’s not necessary and I’d wait until everything blew over. But he said it’s important that I have my blood tests regularly because my results have a habit of not being settled for long. I still feel like I’m wasting a nurses time by having them come to the house just for blood tests but the decision is out of my hands.

RHEUMATOLOGY APPT:

I had my appointment via phone today. It was very short which is why I’m not doing a post solely dedicated to it. At first I thought it was fabulous that I’d get to stay in my PJs and not trek all the way to the hospital for my appointment but I soon figured out I’d much prefer to see him face-to-face. I find phone consultations with GPs fine but I don’t think it works quite the same with specialists.

He first asked if I had received a high risk letter, which I confirmed I did and he said he was glad as he wanted me to receive one. He also doubled checked that I wasn’t having contact with anyone outside my home. He also said he hopes I’m coping with being isolated from the world, I said I am, I’m just incredibly bored.

He asked if I was still taking my Hydroxychloroquine, Mycophenolate and Apixaban, I confirmed with him that I was but told him my GP still haven’t put Mycophenolate on my repeat prescription (this has been an on going battle since November of last year, I’m over it at this point). He is as confused as I am as to why they’re not putting it on there. He’s going to ask them to put it on my repeat in his letter so I assume I should see it on there shortly.

He asked how I am and I said I still have the usual aches and pains but there’s not much that can be done. He said he thinks he has me as well as he can get me. He has put me down for an appointment in 6 months time but he said that could change but he hopes to see me in person next time.

That was it. It was over in less than 5 minutes. If it was a face-to-face appointment it would have been different. He would have had more recent blood tests to go off to know where we’re standing with Lupus at the moment and he probably would have ordered some more.

It’s the best we can do given the circumstances but still didn’t enjoy it and honestly I found it to be a bit of a waste of time (not for me but for him).

I’m incredibly busy and have a list of things I need to get through so I’m going to leave this here. I think I’ll start with my weekly Ben Nevis climb*

*that was sarcasm for the people who think I’m busy and could climb Ben Nevis (to clarify, I could never)

Goodbye Azathioprine, hello Mycophenolate!| Rheumatology appointment 14-11-2019

If you’ve read my previous posts, you’d know that I entered a vile flare, possibly the worst I’ve experienced. During this flare, Azathioprine once again made a mess of my white cell count and we believe it also affected my liver. On October 30th, I was given the green light to restart Azathioprine. I had voiced that I did not wish to remain on Azathioprine numerous times throughout this flare but it seemed like nobody was listening to me. When you have a chronic illness, you slowly realise you’re in charge of your body and that means sometimes you have to say no to doctors and essentially, refuse treatment. Instead of restarting Azathioprine, I brought forward my Rheumatology appointment to discuss a new treatment plan.

I felt nervous for this appointment, a part of me thought my consultant would refuse to change my treatment and tell me to stay on Azathioprine. I brought my mum along with me, I prefer having someone with me at ‘big’ appointments, in case I forget anything he has said to me.

He started the appointment by telling me he has been in contact with my GP quite a lot recently – most likely discussing my blood tests and treatment for the flare. I told him I’m starting to feel better and like I’m coming out of the flare. I did question how I’m meant to be lowering the steroid dose, I was given 4 boxes of 1mg tablets and each box had the same instructions. It implied I would be on 4mg for a month which didn’t seem to fit the original weaning process we had planned. I did drop to 3mg on my own accord, something I told my consultant and he said I did the right thing. He told me to reduce the dose by 1mg each week, which means I will be steroid free within 3 weeks. This stint on steroids has lasted much longer than last years stint, I can’t wait to be free of them again.

I then explained that I feel as if we have come full circle with Azathioprine and that it’s time to give it up. It doesn’t seem logical to stay on a medication that keeps messing with my white cell count and liver and the last couple of times it’s happened, I’ve been put on steroids. He asked if I wanted to solely be on Hydroxychloroquine or if I wanted to replace the Azathioprine with a different medication. I told him I wanted to replace Azathioprine. I’m not stable enough to be on just Hydroxy which is why I was put on Azathioprine in the first place.

We have swapped Azathioprine for something called Mycophenolate which is also known as CellCept. Like Azathioprine, it’s an immune suppressant. That means it could affect my white cells and liver just like the Azathioprine but it could also be the wonder drug I’ve been searching for. It’s a bit of a gamble but you have to try these things to find out. My dose is 500mg in the morning and 500mg at night. I need fortnightly blood tests until my body has settled on it which isn’t too bad as I’m already on fortnightly tests. As of writing this, I’m on my 2nd day of the Mycophenolate and I haven’t encountered any side affects yet so let’s hope that continues. It doesn’t work immediately and it can take up to 8-12 weeks before I feel any benefit. I logged my experience with starting Azathioprine here and I plan to do the same with Mycophenolate.

I’m lucky that my Rheumatologist listens to what I have to say in regards to how I feel about my treatment plan and takes in what I think is and isn’t working. I didn’t need any blood tests at this appointment as I’d had some on Monday. I see him again in 3 months time.

At the appointment previous to this, my consultant said he will see me in 8 months time. When we left the room, I turned to my boyfriend and said “something will happen in that 8 months, just watch”. It’s funny how you’re right when your body is dysfunctional.

Onwards and upwards. Lupus 0 – Emily…I’ve lost count.

Torturous Flare and Torture Pills

I’m currently in a flare that has floored me. I would go as far as saying it’s the worst I’ve experienced since my diagnosis – I feel as bad as I did when Lupus first hit me. I can’t do anything other than sit or lay down, count the hours down until the next dose of meds and watch mind numbing TV. I can’t get through the day without having a sleep. The most strenuous thing I’ve done is shower or have a bath, I get out of PJs and straight into a clean pair. I have only left my house 3 times – to see either the doctor or nurse. It’s been extremely frustrating and I’m starting to get cabin fever.

My joint pain is horrific, it’s everywhere – shoulders, elbows, wrists, hands, fingers, hips, knees, feet and toes. There’s muscle pain, particularly in my arms and thighs. I’m beyond exhausted, as I said above, I can’t get through the day without sleeping. There’s pain in my lower back and my sides. The lymph nodes in my neck and groin are swollen and the ones in my groin are particularly painful – sorry for TMI but this is Lupus and it isn’t exactly the most glamorous of things. There’s been headaches of all different degrees, some making lifting my head difficult and others being more tolerable. I’ve had fevers of different severities, one in particular kept me awake for most of the night. I’ve felt nauseous and vomited. At times it has felt like the organs in my abdomen were being squeezed. It’s been difficult to stand for longer than a few minutes, my knees get sore and I get slightly lightheaded.

At the start of the flare, when I realised it was going to be a bad one, I decided to take morphine. I have taken morphine once before but took half the dose because I’d never taken it before. But, because of the severity of the pain, this time I knocked the full dose back and what an experience that was. I was looking forward to it knocking me out and going into a deep dreamless sleep. I took the morphine at 11pm and I was still awake (off my face might I add) at 3am. I was completely bewildered that I had taken such a potent drug that puts most people in a coma like state and I was awake. However, due to my altered mental state, I couldn’t have cared less about being awake and the hours seemed to fly by.

As the morphine wore off and the morning went by I realised I needed to see a doctor because the symptoms were piling up. I told him about my ordeal with morphine and he also looked at me bewildered that I had managed to over power morphine and stay awake. It turns out that it can be a side affect but it doesn’t affect many people. I find codeine a helpful painkiller but I can’t take it when I already have a headache because they induce headaches. I was given more naproxen and a hefty box of tramadol. The GP thought I’d benefit from a steroid injection – causing an instant rise of panic because I had a bad reaction to steroids last year. They caused intense anxiety and panic attacks. He reassured me that I would not get that side affect with the injection. Before he could give me the injection he had to get the go ahead from my rheumatologist. He asked me to return to the surgery the next morning for blood tests and said he would call me in a day or two with the results and with the rheumatologist verdict.

The blood results were fairly stable, which in Lupus, means absolutely nothing. The only one that was abnormal was my white cell count, it was low. My Rheumatologist (to my surprise and annoyance) decided against the steroid injection. I was told to return to the surgery in a week for more blood tests. I felt let down, it felt like another “here’s some painkillers, just let it pass on its own” situation. I was then left confused, he said if I felt the same after the next set of bloods, I could have the steroid injection. So, why wait?

The night before my next set of blood tests I was in one of my ‘what’s the point in having them? I’m not going’ moods. I was fed up, in pain and exhausted and I didn’t want another phone call that ended with “see how you go”. But, if I skipped them, my mum and boyfriend wouldn’t have let me hear the last of it. I felt no better, in fact I felt worse – just sitting and being awake was too much. I asked the nurse to put me down for a call back the next morning.

I waited all day and I didn’t receive a phone call, I gathered the results were either fine or he forgot. But then at 7.30pm the caller ID ‘doctors’ flashed on my phone. My CRP level (inflammation marker) was higher, my white cells had dropped further and my liver results were abnormal. I told him I felt worse and that it was resembling how I felt when my Lupus first developed. The steroid injection was now a big no, everything was out of my GPs hands and he had to contact my consultant for a new plan. Due to my white cells being low, Azathioprine (immune suppressants) have been stopped again. And once again, I’m back to weekly blood tests. Once the levels have gone back to normal I can restart on a lower dose of 100mg. I can’t see the point or logic in putting me back on them, this is the 2nd time I’ve had to stop them due to them messing with my white cells and it’ll be the 3rd time the dose has been altered. In my opinion, they aren’t working for me anymore and it’s time to try something else.

Fast forward a few days and I get the call from GP with my Rheumatologist’s verdict. Prednisolone. The same steroid pills that caused me such brutal mental torture last year. I said I’d never take them again but is there any point in arguing with my consultant? Probably not. I put my head in my hands and cried. I can’t fully describe what these pills did to my mind. They are mentally toxic and the worse part is, this dose is higher than last years. I was fine on them at first but you need to be weaned off steroids. And it was during the weaning process that the intense anxiety and panic attacks started. I’m petrified of them because I know what to expect and if it starts again I won’t stay on them. I’ll more than likely update on here with how I’m doing on them, maybe I’ll be fine?

If I had that steroid injection in the first place, would I even be on these torture pills now? My gut feeling tells me no.

Healthy to incurable | World Lupus Day

At 19 years old, I didn’t know this day existed and I didn’t know much about Lupus in general despite my own father having it. I knew he had it and I knew it was something to do with the immune system but that’s as far as my knowledge went.

At 20, I woke up with a rash on my right cheek. I thought it was an allergy to something. I took an anti histamine and thought nothing more of it, I trusted it would be gone in a day or two. That afternoon I suddenly became unwell with an achy body, joint pain and severe fatigue. My friend forced me to a doctor where I was told I had a virus. I walked back into my house under the pretence that I had a virus and would be back to my normal self in the coming weeks. I fell into a deep sleep that lasted over 20 hours. It wasn’t a virus, it was Lupus greeting me and as I slept nearly a day away, it was ravishing my body.

To sit face to face to a doctor and hear the words “there’s no cure” is soul crushing. I was confused how I went from healthy to incurable in a matter of months. I couldn’t make sense of it and the more I thought of it the more angry I got. Every question I thought of asking had no answer. One day I was fine and perfectly healthy and the next I’m sick with an incurable illness. I spent weeks refusing to believe it, despite my mind making a connection with my body and realising something had gone terribly wrong months earlier to my diagnosis. I wanted to scream at my body to reverse the irreversible. It was like being under murky water, I couldn’t find a way out and I was drowning in fear.

4 years later, I still don’t know why or how and I will more than likely spend the rest of my life wondering why. It’s infuriating to live with a disease that has no answers to my questions. I will never stop being grateful to the scientists and doctors researching Lupus so that one day I might recieve a concrete answer. I will always be thankful for my family, boyfriend and friends who stand by my side through it all. I will always be thankful that during my Lupus journey I have met others living with chronic illness who understand me. I look back and realise I handled it and myself well when I was thrown onto an unknown path but it didn’t take me long to find my feet in my new world.

At 24, I’m grateful for this day. A day to talk about the disease that is unknown to the majority but has destroyed so many lives. Today, on World Lupus Day, please talk about it. Talk about Lupus, tell people what it is. Help us raise awareness for a disease that has taken so much away from us. Let the world see and know about Lupus, stop letting it hide.

A Health Update

I’ve been neglecting my blog and there are reasons for that. The first is, I’m struggling to write a half decent post – well, half decent to me. I have the post planned in my head but I can’t seem to get the flow right or find the right words. Secondly, as part of my aims for 2019, I joined the read 50 books in a year challenge. I thought I’d have given up by 1st February but in a twist of events, I love it and I’m still going strong. I believe at the time of writing this I’m on book 21. So, my lack of writing is a mix of brain fog and having my nose stuck in a book. I had my birthday since my last post, I turned 24 which brings me into my 4th year of battling Lupus. It feels a lot longer than 4 years but I have learnt so much and met some wonderful people who also battle chronic illness.

My 2nd aim was to go vegetarian. There has been claims that having a meat free diet can help Lupus and its symptoms. Lupus is a very individual disease, no two people suffer in the same way so I fully believe that a meat free diet has and can help people. I haven’t noticed a difference but that doesn’t dishearten me as I didn’t go vegetarian to see if it would help. I simply did it for my love of animals. I stopped eating meat on the 1st January and it has been the easiest thing I’ve ever given up.

I’ve already been on anti biotics and I need you to sit down for this next bit…it wasn’t a Lupus related issue, it was from what my dad commonly calls a ‘classic Emily moment’. I was boiling the kettle and as I reached over for the tea canister the kettle released steam and burnt my arm. I knew it looked a bit dodgy for a burn but I have a habit of letting things that need checking by a medical professional sit for days on end. Long story short – it looked dodgy because it was infected. I have since moved the tea canister to a safer area and I have a scar to remind me of the day my kettle betrayed me.

Lupus has been a little delight as always, it’s been giving me utter joy. My fatigue has been heightened since last month, its been at a level that makes the smallest thing seem like climbing a mountain. There has been days where it returns to its normal level but it quickly creeps back up to an unruly level. I struggle to describe fatigue because it goes beyond tired. It can be completely paralysing and it’s a devastating feeling.

There was a period last month where I had extremely bad all over body aches. I find that intense fatigue and body aches often couple together. It was horrendous, I couldn’t find a position to sit or lay in that helped or was comfortable. I forced myself on walks with the dogs to try and stretch my body out which I know makes it worse but it’s something I repeatedly try for some reason. The only thing you can do is wait for it to pass and it did. However, in the last few days the aches have flared up again. It’s not on the same scale but it’s still uncomfortable.

My joints have been sore which in the past week has really intensified. I’ve got through the days by taking codiene, paracetamol and ibuprofen one after the other. I put myself on absolute rest from Saturday to Thursday because my whole body was screaming at me to stop and stay still but being honest, I needed longer than that. It’s a constant sharp pain in my shoulders, elbows, wrists and knees. My knuckles are swelling up again and my ankles keep going puffy.

I have had muscle pain. It’s mostly in my thighs and upper arms, it’s a sharp pain, like I’m being stabbed over and over. It usually starts up when I’m trying to sleep…conveniently.

I recently went through a stage of feeling sick at random times in the day. I then lost my appetite and didn’t eat for 3 or 4 days. Loss of appetite happens to me so frequently that it no longer bothers me. It’s a bit like “oh well, there it goes again, I’ll sit and wait for it come back”, it always does, it’s like a boomerang.

I’ve had pain in my sides. This is one of my less frequent symptoms. It’ll show its face for a few weeks then bugger off. It’s a dull pain in my back under my ribs that curves to my sides…if that makes any sense. The main inconvenience is it can make sleeping troublesome because I can only fall asleep on my side. I’ve had it for about 3 weeks now so I suspect it’ll disappear as suddenly as it appeared soon enough.

For a couple of weeks I’ve woken with a headache, most of the time they’re intense. I had to cancel my blood tests on Wednesday morning because it was too painful to just lift my head off the pillow. I can get them to die down by paracetamol, ibuprofen and a lot of water but once the meds wear off, it returns at its intense level.

Yesterday I deep cleaned my room. In my head the plan was to do it over a week but we all knew that wouldn’t happen. I’m the kind of person who needs to finish something like that on the same day. So, in Emily fashion, I plowed through the room in a day. I have bruises, intense joint pain, my fatigue is soaring, my muscles hurt, I have a headache (again, I was getting them under control). It was possibly one of the worst things someone with Lupus could do. So, in short, I fucked up yesterday and I’m half dead…but I’m half dead in a room that’s never been cleaner…every cloud has it’s silver lining, right?

I wouldn’t exactly say I’ve had the greatest time since my last post but I’ve quietly plodded on…there’s not much else you can do. I’m going to try and get my head back into blogging, I do miss it and the escape it offers me to vent about my disease.

The post Christmas flare has hit

The post Christmas & New Year flare hit me like a train, a train I expected to hit me, it always does. I can more often than not predict flares but I can never predict the severity of it. Post Christmas flares tend to hit me at full force when I finally stop and stay still. I’d compare the on set of this flare to having a brick launched in your face by a champion shot putter.

There was something new with this flare – swollen knuckles. My hands are a part of my body that usually goes unaffected, they get sore and sometimes they’re weak and I drop things but they have never swelled for a long duration like this. My right hand is the most affected and it has been swollen for a week, my left is also sore but it only swells every now and then, mostly at night. There has been some days where my hand has stayed in a ball and despite it being less painful for it to be open, my fingers would curl back into a ball on their own. The swelling tends to get worse at night which I presume is due to using my hands throughout the day. I have tried Ibuprofen, Diclofenac, Tiger Balm and Deep Freeze but none of the above seem to help, it’s a case of waiting for it to go down on it’s own accord.

I have had severe joint pain too. Shoulders, elbows, wrists, fingers (probably tied in with the swollen knuckles), knees, ankles, feet and toes. It’s a sharp pain but it can often be dull too. It’s a constant pain, it seems to always be there but in varying degrees throughout the day. By early afternoon it tends to grow in intensity and by night it’s at the most severe level. Doing small tasks like sorting laundry triggers the pain to get worse in what seems like seconds. One evening last week, I noticed that my knees had began to swell, they haven’t gone down but at least they haven’t swelled any further.

If sore and inflamed joints weren’t enough, I have been experiencing a lot of muscle pain. It’s most severe in my calves and upper arms but it has been affecting muscles I didn’t even know I had. It’s a sharp pain but at times it’s a dull like bruise pain and it’s more often than not a constant pain.

I have very limited energy. I seem to be craving naps and napping is something I try to avoid. It makes me feel lazy but it’s more to do with waking up from one feeling worse symptom wise. I usually keep myself awake throughout the day but there has been occasions where this is entirely impossible and I end up falling asleep. I feel as if my eyes are constantly burning and that I need match sticks to keep them open. Very small tasks like getting washed and dressed seem enormous. I haven’t (unsurprisingly) been sleeping well, I keep waking multiple times throughout the night, which isn’t helping my fatigue levels.

I’ve been having headaches. There was one evening last week where I suddenly developed a severe one. I was sitting in the living room with my family and out of no where a sharp pain abruptly started in my temples, just moving my head caused significant pain and the lights were hurting my eyes. After half an hour I started to feel nauseous so I went to bed. The next morning, I realised it was more than likely a migraine. I’ve had less severe headaches almost daily, like a dull constant pain in the back of my head.

Most people are over Christmas, after the decorations have been taken down, it’s not given a second thought. I’m not over it, this is what Christmas and New Year does to me. This isn’t a random occurrence, it happens yearly, Christmas is the hardest time of the year for me. I struggle with the preparations for it, I struggle through Christmas Day, Boxing Day and all the days in between. By New Year my body is begging me to stop. And, when I do finally stop, the punishment for enjoying Christmas starts and I have no idea how long it will last.

Blood clots on the brain: a diary of a shit time

I’m currently battling the most stubborn headache I’ve ever experienced. It’s been with me since Tuesday 27th November. The 27th-30th were covered in this blog post. For ease, I’m going to list the symptoms I have here so I’m not repeating myself in each section.

• The headache: it starts at the back of my head, climbs round to my temples and to my eyes. Oddly, my scalp feels tender, which isn’t something I’ve ever experienced with headaches so I can’t be sure if it’s linked. Either way, it’s uncomfortable to lay on. There’s a bruise type pain at the back/base of my neck.
• Lupus symptoms: I usually take codiene for my Lupus pain, however codiene induces headaches for me or makes an existing one worse. I’m relying solely on paracetamol and ibubrofren and at this point, I may as well just be eating Smarties. I have terrible pain in my elbows, wrist (wrist joint has been swollen), fingers, knees, shoulders, chest, back, fever, dizziness (not constant), extreme fatigue, muscle aches and pains.

1st December: The paracetamol, ibuprofen and tramadol have had no affect on this stubborn headache. Today I bought 4Head strips and White Tiger Balm (this one is aimed at headaches). The 4Head strips felt nice and cooling but did nothing to help. I had a lot of hope for the White Tiger Balm because I swear by their red balm but it offered relief for only 20 minutes.

2nd December: Today I went to buy some Migraleve but Boots didn’t have the pack with the pink and yellow tablets. Instead I bought 8/500 (8mg of codiene and 500mg of paracetamol – which is what the yellow tablets of Migraleve contain). I took them every 4 hours to have no relief. I’m beginning to feel very low in mood and a little bit defeated.

3rd December: Sometimes I can’t face what Lupus throws at me without medical intervention. I went to my GP who admitted the length of the headache is concerning. He prescribed Diclofenac 50mg which I can take 3 times a day. He told me if they didn’t work I had to call my Lupus/Rheumatology nurse. They eased the eye pain for a small amount of time. I gave it the benefit of the doubt and believed by the 2nd dose things would be a lot better but again – nothing. By the time I took the 3rd dose it wasn’t offering relief for the eye pain. I’ve spent the day feeling angry at my own body and terribly grumpy.

4th December: I planned to ring my Rheumatologist Nurse today but she was in clinic and was unable to talk. I spoke to my consultants secretary instead, she took a list of my symptoms and was going to pass the message to him. My headache remains the same today, the Diclofenac isn’t much help.

5th December: I got a call from my consultants secretary. My appointment has been brought forward from February to tomorrow. There’s not much else to say other than the headache is still firmly with me and it’s beginning to make me feel nauseous.

6th December: I saw my consultant this afternoon, here’s a blog post that covers it in more detail. The fluorescent lights in the hospital made my head worse. I can’t even describe how fed up I feel with the headache and joint pain. I just want to lay in bed until this is all over. I couldn’t eat anything tonight because I feel nauceous.

7th December: It feels as if this headache won’t disappear. I travelled to my boyfriend’s family tonight and the headlights from other cars aggravated it – especially the pain in my eyes.

8th December: Today my head felt extremely foggy and heavy. It was hard to concentrate on most things. But, then again, it’s been hard to concentrate since the headache started. I think my patience has finally ran out with it because it just doesn’t seem to want to leave me.

9th December: I woke up headache free. FINALLY! I sat up this morning and felt like doing a Mel Gibson in Braveheart…but I thought it was probably best to do subtle head movements on my first day of freedom. It did start to creep up at random times in the day but it successfully responded to paracetamol and ibubrofren.

10th December: Guess what’s back? I had one day free and it came back. My eyes are still free from pain but it’s at the back of my head and temple area again.

11th December: It had dulled down but yet again, it returned at night. It’s only at the back of my head tonight though, so that’s something positive.

12th December: Today was the same as yesterday – clear all day until early evening and it started up. Again, it was only at the back of my head, leaving my temple and eye area free.

I believe it’s finally starting to leave me and it’s just taking a while for the stragglers to leave (the pain in the back of my head). And, for that reason, I’m leaving this post as it is. I will admit that I knew something wasn’t quite right when Diclofenac offered no relief. I kept quiet to not worry anyone but I ultimately knew the only person that could help was my consultant. Oddly, the thought of blood clots on my brain doesn’t scare me, I think I’ve gotten used to the dysfunctional verison of my body. I’m not used to battling Antiphospholipid Syndrome because Lupus is usually the prodominient illness for me and I can whole heartedly say…it was bloody miserable. I’m starting to perk up again but I still don’t feel 100% like myself yet.

Ps, I sincerely apologise to whoever I conversed with during this shit show.