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.

A VERY overdue blog post. Shielding, Covid-19 vaccine & Lupus update

I have been gone from my blog for so long that I don’t even know how to start one anymore. I can’t say I haven’t wrote anything because there’s a post in my drafts from September. I have read it back and it looks like it should have been published, so I either changed my mind or I wanted to add more – I’ll revisit it soon. I space writing a post over a few days, I never write one in a single sitting and usually they’re written late at night. So, I’m going with the idea that more was to be added. Although, in my defence, there is only so much I can write about shielding and my rheumatology appointments have all been via phone calls which are about as interesting as watching paint dry.

In regards to Covid-19, I’m still shielding and my shielding dates have been extended until March 31st. Although this time I can leave the house for medical appointments and for exercise. Shielding the first time round was tough, especially the longer it went on, so this change was very much welcomed. Some days it’s hard and I miss the simplicities of going for a meal and seeing a film at the cinema. Other days are easy and I find that I quite enjoy being in my own bubble and doing my own thing. I’m not a social person, I wouldn’t label myself as unsociable, more introverted. I have a very small group of friends and I think being quiet and introverted definitely helps during lockdowns. I imagine that social butterflies are finding it tremendously difficult and are climbing the walls for social interaction.

To keep myself occupied during shielding I read books, I’m currently reading the Scarpetta series by Patricia Cornwell, which were recommended to me by my mum. I love them, however, Scarpetta is a forensic pathologist so there’s a lot of scientific wording used and some days my brain fog just won’t allow me to take it all in…and I’d be lying if I said I hadn’t had to google a few things. There’s 24 books in the series and I’m slowly making my way through them all, I’m only on book 9 so they’ll keep me occupied for a while, they are hands down the best books I’ve read in a while! I have been watching far too much TV (and then I feel guilty for not reading). I say far too much TV because generally I’m not someone who watches a lot of telly or films. I go out for walks with the dogs every other day because I physically can’t walk them daily, it becomes far too much for my joints and my pain and fatigue levels shoot up. I’ve seen some people saying this is the hardest lockdown so far but for me, it’s the easiest but that’s probably because I can leave my house this time.

I received my first dose of the Covid vaccine, which is something I really wanted to write about because I have seen a lot of people worrying about it. I had the Pfizer vaccine. If you get the annual flu jab, I would say it feels like that going in, it isn’t painful. I was asked some brief questions; if I’ve had a Covid test in the last week, if I have any symptoms of Covid and if I had received any other vaccine in the last week. Once the questions were answered the vaccine was administered. The longest part of the process was waiting the 15 minutes afterwards, which I’m sure just applies to the Pfizer vaccine, with the other vaccines I think you can leave straight away. I had my vaccine around 5pm and for the rest of the evening I felt no ill effects. However, the next day I woke up with a crippling headache, a slightly sore arm, which I expected, and fatigue. In the days running up to the vaccine I was already suffering headaches so I think the vaccine exaggerated it. I already suffer fatigue so I was dealing with fatigue from lupus and fatigue side effects, it was like fatigue on steroids. At 7.30 that night I gave in and went to bed but I felt a lot better the next day. I believe headaches and fatigue are the most reported side effects. All in all it was easy and the side effects didn’t last too long, all you need is a lot of water, paracetamol and a good sleep.

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I suppose it’s time to discuss lupus. I’m still handling Mycophenolate well, I haven’t had any side effects from it, overall I think it’s a landslide better than Azathioprine. My daily symptoms remain the about same but I think it’s doing a much better job at controlling my lupus from going haywire. I haven’t had a phone call about abnormal blood test results in a while. However, I can’t put that down solely to Mycophenolate, due to Covid I haven’t been having my blood tests as regularly as I usually do. And, there has been times where I’ve felt so unwell that I think they would have come back somewhat abnormal. I know what normal lupus pain is and what ‘uh-oh’ lupus pain is and there has definitely been some uh-oh lupus pain. The snow and minus temperatures we’ve recently had haven’t helped, the cold weather seems to seep into my joints and once the cold is in my joints my other symptoms snowball. Over the years with lupus I’ve found January-March are some of my worst months, I cannot cope with the cold, which is a shame because winter is my favourite season (very unpopular opinion, I know!).

Moving to the uh-oh lupus pain. It started about a month ago and I genuinely thought and in some ways still feel like I’m heading down the road to steroids. Some days my fatigue is as high as the Burj Khalifa and I’m taking naps, which for those who know me, it takes a lot for me to give in and go to bed for a couple of hours sleep. I’m really struggling with concentration and brain fog. The other day I was making a cup of tea and was about to put the milk cap into my mug instead of back onto the milk bottle. I’ve put bread in the fridge and cheese in the bread bin. Thankfully I realise what I’m doing so no milk cap ended in my tea and the bread and cheese went back to their respective homes.

I’ve been suffering from intense headaches, the GP believes I’ve had a migraine without aura and a tension headache…simultaneously to really brutalise the pain. I was prescribed Rizatriptan, which I was told would make me sleepy and that I should sleep well…that is not how it went down. It gave me bizarre dreams and I kept waking up. It was like the time I took morphine and instead of knocking me out, I was up all night staring at the walls and ceiling until the sun rose. I never get the side effects that I desire. The pack had 3 tablets in and I took them for 2 consecutive nights and they did help but by the 3rd I was desperate for a solid night sleep that I took a sleeping pill instead. I’m still getting headaches – I always will have headaches but the migraine has finally gone. So the tablets that gave bizarre dreams did help in the end – they were rancid though, they had to melt on the tongue and they did try to make them minty but it definitely didn’t hide the bitter taste of tablets.

On top of the migraine and tension headache I have had dizziness. This was along side the headaches and I brought them both up on the same phone call with the GP. I couldn’t look out the sides of my eyes or move my head to certain angles without the room spinning or feeling like I was going to faint. The GP thinks a crystal in my ear has ended up in the wrong place so I was told to do the Epley manoeuvre to try and get it back to it’s rightful place – I won’t go into detail because it’s boring. This annoyed me a little because I have a history of crippling headaches – which we eventually learnt were blood clots on my brain that fizzled out of their own and these headaches felt pretty much identical. I did the Epley manoeuvre but it had very little affect, I was told to call the doctor back if it didn’t help but I chose not to. I appreciate my doctors but sometimes I feel as if I waste their time as well as my own, because when push to comes to shove, they do not understand lupus. Unfortunately it is a common feeling with those who have chronic and complex health issues and eventually we learn to deal with issues that arise by ourselves.

My Rheumatology appointments are still via phone call. I much prefer face-to-face, I feel like it’s easier to talk to him in person about my lupus than it is by phone. My next appointment is in March, originally it was going to be in person but a few weeks it was changed to a phone consultation. I understand why he would rather ring me than have me in the hospital, it isn’t safe for someone immune-suppressed. I feel like I can get my points across better in person then I can over the phone. It might sound odd but when I’m at a face-to-face appointment I can remember more, at home I have things that distract me and my mind can’t stay focused on the list of things I need to tell him. For my next appointment I’m going to write a list and check off each thing when I’ve mentioned it.

I think I will leave this post here. It was good to be back on my little blog! Until next time…

– Emily. X

*This blog was set up to educate and raise awareness for lupus so please don’t feel or think you can’t ask me questions about it. If there’s anything you’d like to know please don’t hesitate to contact me and I will compile things into blog posts to answers your questions. You can contact me via the contact page on here. I have never been bothered about questions regarding my lupus so don’t feel as if you can’t ask.

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.

Rheumatology appointment: 28-02-2019

This appointment had 3 months between my last appointment which you can read about here.

All checks such as blood pressure and urine were fine. For some reason I wasn’t weighed which isn’t a problem for me as I haven’t been eating as healthy as I usually do in the last couple of weeks…chocolate, crisps, Costa’s with a cake at the side and popcorn at the cinema last night.

My consultant firstly asked about headaches, probably due to the last appointment being centred around them. I told him I have noticed a difference since my dose of anti coagulants (Apixaban) had been increased. But, I also told him in recent weeks I had suffered some headaches but no where near on the pain scale as they previously were.

At my last appointment he increased Hydroxychloroquine back to the original dose of 400mg a day in the hopes it would help my aches and joint pain. Today he asked if I felt any benefit with the increased dose and I admitted that I felt no benefit or difference . He seemed disappointed and said he hoped it would improve things.

I told him that today I had pain mostly located in my elbows, knees, right shoulder and that my fatigue has been heightened recently. I recently had an odd rash on the inside of my left thigh, he asked how long it stayed for and I confirmed it was there for a week. I showed him a picture of it and he said it was burst blood vessels which is normal with my conditions. I also mentioned that my knuckles keep swelling and at one point my right hand wanted to stay closed.

Another point of the appointment was about teeth. I had discussed teeth with some other Lupus sufferers and they all said I need a prescription toothpaste. I asked my consultant if it was Lupus, meds or a combination of both that caused damage to teeth and he confirmed Lupus likes to pick on teeth. Mostly because Lupus often comes with secondary Sjogrens Syndrome which causes a dry mouth…guess who has secondary Sjogrens? He agreed that the toothpaste would be beneficial but he has struggled to get hold of it in recent years and that I’d have more success obtaining it via the dentist. In the mean time he has prescribed a spray to use as often as needed which stops the mouth from becoming dry and preventing damage to the teeth.

The time between appointments has changed from 3 months to 6, which I’m glad about. I had some blood taken and was sent on my way.

Why I choose to be open about my illness

Health is viewed as something that should remain private, something between yourself and your doctor. I understand why people are taken aback by how open I am about my illness. After all, writing about the intricate details of your illness for anyone in the world to read is almost unheard of.

At first, being open wasn’t an option, everything was to remain private, with the exception of family and close friends. My father, who has the same illnesses, is notoriously private about his health. In fact, he only started to talk about his health with me, when I was facing the same fate. Not hearing him speak of his illnesses became normal to me, I thought that was how you were to handle having a chronic illness. And, that is partly why I decided remaining private was the best decision.

At the start, there was nothing to indicate that I was poorly, only a bright red rash on my right cheek. But as the months went on, I grew pale and I looked exhausted. A picture of my cousin and I was taken, it was my first experience of using make-up to hide my illness. I thought I made myself look how I wanted: well. Later that night, I saw my mum looking at the picture and she had a sad expression on her face. She looked up at me and said “you look poorly, it’s your eyes”. I brushed it off, thinking I did a good job at hiding how I felt, but I recently looked at the picture and she was right, I looked poorly. It was all in my eyes, they looked glazed, almost like I wasn’t there. I guess the saying ‘eyes don’t lie’ is true. The picture, for those who don’t know me, I’m in the pink cardigan.

People had started to realise something was amiss, I was no longer seen out and about. For months, I was shrouded in the same four walls in a zombie like state. But, when I was seen people would ask “are you OK?” and all I could reply was “I’m being tested for Lupus”. I could see the confusion in their faces and I was already being asked “what’s that?” at that stage. My GP told me to prepare myself for a Lupus diagnosis, and at first, I didn’t. For a time, I would lay in bed and think “like hell I have an incurable illness”…that’s something people call denial. Due to my acute denial, I didn’t research it, so I didn’t have a solid answer to give.

The consultant turned to me, looking serious and said “you have Systemic Lupus Erythematosus”. I didn’t have an “oh shit, it IS Lupus” moment, I reacted like someone had told me I had a cold. People still asked how I was doing, but I could no longer say I was being tested for Lupus. Plus, I wanted to keep it private so I just said “I’m getting there” when I wasn’t ‘getting there’ at all.

The questioning was a regular occurrence, so I did something that started a domino effect that would eventually lead to this blog. I wrote on Facebook that I had been undergoing testing for Lupus and I had received a diagnosis. The “how’re you?” questions were replaced with “what is Lupus?”. By this time, I had researched it and I could give a clear answer. My explanation became a monologue, it sounded as if I had stood in front of a mirror, rehearsing it over and over. I would find myself explaining it to the same person multiple times.

I’d wonder why nobody could understand it and why they were so fascinated by it. Then it dawned on me, I’m describing a serious illness but I look healthy, they couldn’t fathom it. I decided it was out of the ordinary and that’s why it was so fascinating. It’s a fascinating illness, you could research it for several hours and still be uncovering the layers of it.

The idea of a blog would surface in my mind numerous times but fear stopped me. I was petrified of being judged for something beyond my control. I’ve realised people become very judgemental when it comes to topics they know very little about. However, I realised that if I wrote about it, would people learn? Would they understand my illness? I asked myself, do you really want to share your journey with Lupus? My instant thought was no, but if I did, it could make a difference. I downloaded WordPress but the app remained untouched for a couple of weeks.

Whilst watching TV, I spontaneously opened the app and tapped the sign up button. It asked what I’d like to call my blog, it took me less that 2 minutes to decide a name. I went with the first one that came into my mind: Me, Myself and Lupus. I didn’t take my blog seriously at first, after all, I was only treading the waters of blogging to see if I’d take a liking to it. I started writing my first blog post: My Diagnosis Story. It’s a post I regret, I don’t regret sharing it, it’s a post I would have wrote regardless. My diagnosis was a pivotal moment in my life, it’s a story that I could and should have put more effort into, but I didn’t and that’s what I regret. I published it and shared it on Twitter. I wasn’t ready to share with my Facebook friends.

I realised I liked writing, it proved to be threaputic to me. I started to take my blog seriously. I logged on and picked a theme, I chose a font, added a profile picture and chose a colour scheme. I learnt how to make banners and logos, I spent a few hours on the appearance. I wrote a few more posts, still only sharing to Twitter. During Lupus Awareness Month, I decided it was time to share my blog to Facebook. I was nervous, it’s easier to share the details of your illness with strangers, they don’t know you and they will never see you. I was blown away by the response and the amount of support I received regarding it. It propelled me into writing more.

Writing is now a big part of my life, a love I didn’t know I had. I love my corner of the internet, it’s my space to freely write what I like. Not every aspect of my illness is documented here, there’s some parts I keep private. Making my journey with Lupus a public one wasn’t an easy decision but it’s one I don’t regret.

The people who asked are no longer asking and they have a basic understanding. I have had thank you messages, it has made other sufferers realise they aren’t alone. I’ve had thank you messages from people who just wanted to learn. My blog has been shared by Lupus UK. It has helped and that’s exactly what it was set up for. Lupus still has very little awareness and it’s for that reason, I won’t stop sharing my journey. It’s a helter skelter of a journey, and you’re more than welcome to join me.

Azathioprine, steroids and symptoms resurfacing.

I went to my last set of blood tests (Friday 11th May) with low expectations of any change to the results. Tuesday 15th, the doctor rang me and if I’m honest my first thought was that something else had gone wrong. But, he called with good news, my white blood cells and neutrophil levels had returned to normal! By afternoon, I was nearly skipping into the surgery to pick up my Azathioprine, the dose has been reduced from 150mg to 125mg. I can’t say for definite why this all happened but I believe my body just couldn’t tolerate the higher dose of 150mg. Before all of this happened, I thought Azathioprine was borderline useless. It wasn’t until they were abruptly stopped that I realised just quite how much they helped.

Thursday 17th: I received a call from my Lupus nurse. It basically consisted of her telling me I could restart Azathioprine and my blood tests can go from weekly to fortnightly. I happily cancelled my blood tests for the following day. Weekly tests get beyond tedious.

Friday 18th: I reduced my steroid dose from 15mg to 10mg. I will remain on this dose for just 2 weeks before reducing again to 5mg. The first side affect I encountered was hunger and I can fully understand why people gain weight – it’s insatiable. You could have put an extra large mix grill in front of me and I’d have probably demolished it (I never eat mixed grills, I don’t think I’ve ever ordered one). But thankfully, the hunger feeling seems to have disappeared. The next slightly bizarre side affect was and still slightly is, a sore tongue. This only really bothered me when I drank cold drinks or when I was cleaning my teeth. The final side affect that still comes and goes is feeling HOT. It mostly happens at night which disturbs my sleep…not totally helpful for someone who can’t sleep at the best of times.

When I first started steroids, I felt incredible. I felt like I could do task after task without becoming instantly fatigued or sore. However, last week we had family over which put me out of my usual routine and I was doing too much to be able to cope. My energy levels rapidly declined and small tasks started to feel like I was being asked to climb a mountain. Body aches were the next symptom to resurface, it was like I had been dipped in concrete, an overwhelming heavy feeling. My headaches had reappeared, with sharp pains around the eyes. And, the dreaded joint pain started to radiate through my joints, even the tiny joints in my feet hurt. On Saturday, I felt like my body was about to give up, just walking to the toilet was too much. By the afternoon, I had no choice but to go back to bed. I slept all afternoon, even through my Grandfather and Dad drilling through the wall below my bedroom. It was heart wrenching and frustrating to go from feeling well on steroids back to feeling so sore and poorly. It just proves how powerful Lupus can be and if it demands to be felt, it will.

My joints are still very sore and I’m still very fatigued with body aches. But, I’m going to use this week to relax and recover. It can take anywhere from 6 weeks to 3 months for Azathioprine to fully kick in, obviously I’m hoping it doesn’t take long at all. But, we’re at least back on the right track.

Steroids: what are they like?

I’m nearly at the end of my first week on steroids, it’s time to give my initial thoughts on the dreaded medication. When I initially started them, I spoke to a few people in the chronically ill community about their experiences with steroids. There wasn’t one person who wanted to be on them, despite knowing they would help. Steroids work by reducing inflammation and they also suppress the immune system – which is why they are commonly used for auto immune diseases.

Steroids tend to raise the level of glucose and sugar in the blood and they also cause an insatiable appetite – those combined can lead to the side affect that nobody wants: weight gain. I’m being strict with what I consume, carbohydrates turn into sugar, so anything with a high carb content has been eradicated from my diet. The only carbohydrates I eat is what naturally occurs in fruit and vegetables. I have significantly upped the amount of protein I eat too. It’s a complete change around for my diet, I usually consume more carbs than I do protein. Despite constantly feeling hungry, I haven’t caved to it yet. I ignore the hunger pangs and only eat at meal times…I guess that’s where being stubborn comes in handy. Out of everything I’m used to eating, all I miss is a cup of tea with one sugar and a handful of biscuits.

However, I am suffering from two side affects. The steroids are making my body temperature rise and I feel unbearable hot, this mostly happens at night but it has occurred in the day time too. The second side affect is disrupted sleep (as if my sleep couldn’t be anymore disrupted), I definitely think the body temperature has a part to play in this too. I constantly wake up through the night or it takes me hours to settle down and sleep. That being said, I’d rather have those two side affects than any others.

Despite having disrupted sleep, the steroids have worked wonders for fatigue. I seem to be able to do a little more in the day time. Not only that, but I can concentrate on things better and my brain fog isn’t as bad. However by late afternoon I start to become tired again, but it’s probably down to me taking advantage of not being so fatigued. I’m still having joint pain, but it’s not as constant and it usually starts in the early afternoon and it intensifies a little by early evening. The steroids haven’t worked for my headaches yet, but whilst reading the side affects, it said they can cause them – so I’m not entirely sure if it’s a side affect or lupus.

I would say that so far, the only great improvement I feel is the fatigue. Which is okay with me, fatigue is a symptom I can’t stand or get used to. If my consultant decided to keep me on the steroids for longer than expected, I wouldn’t complain for this reason. But, there’s still time for the steroids to start taking affect on the other symptoms – time will tell. My recent blood tests show that my neutrophil level is still low, so I still don’t have a clear idea of how long I’ll be on steroids.