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.

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.

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.

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.

How Lupus made me an actress

Everyday I have pain surging through my joints. I have headaches daily. My body aches, walking can feel like wading through water. I feel like I’m drowning in fatigue. Lupus is felt by me daily, because it demands to be felt, but it doesn’t demand to be seen.

“How’re you?” is, like most people, a question I’m asked daily. My answer is always the same “I’m doing good”, very few people can detect that I’ve just lied to them. I recently started flaring and my mood slipped low, it’s something that happens a lot during a flare. I’m almost certain that my efforts for it to go unnoticed were successful.

When you’re diagnosed with an incurable illness, you slowly learn how to act. You learn how to smile when smiling is the last thing you want to do. You learn how to do a convincing laugh, when all you want to do is be in bed resting. You learn how to act like everything is OK and that you’re OK.

My main reason for covering up how I truly feel, physically and mentally, is because I don’t want to upset people. I don’t want my loved ones to feel hopeless because they can’t help me. I don’t want people to think “oh here she goes again with endless complaints”. I certainly don’t want to look like I spend half of my time moping around about my illness and how it affects me.

I view my illnesses as a personal thing. There isn’t much anyone could do to help me feel better, it’s a matter of me listening to my own body and doing what it asks. I decide what painkillers would be best with the level of pain I have. I decide if I need to spend the day resting in bed and I decide what I can and can’t do. My family disagree with this, but I struggle to get out of the mindset of it.

My response “I’m doing good” has become an automatic response. My mind doesn’t even think about being honest anymore for the reasons listed above. And, no matter how hard I try to be honest, my mind just doesn’t let me.

Lupus flare number…who knows?!

I have contracted some kind of bug. Lupus and what I call ‘normal people sick’ don’t bode well. It would seem that my immune system sets off to do the right thing, to attack the intruder, but gets confused on it’s way there. It starts attacking my joints healthy tissue instead. It gets to the point I can barley feel the sickness bug and can only feel Lupus. In a sense, when I get a bug I also get a shitty freebie, known best as a Lupus flare.

I spent yesterday in bed reading a book whilst on high strength painkillers, it’s a miracle I followed the story. The pain was consistent all day, a sharp pain radiating through my elbows and knees. I also had all over body aches and muscle pain, particularly in my thighs and calves. The little joints in my hands were also affected by both dull and sharp pains. The pain killers were only taking the edge off, they didn’t offer much relief.

When I got up to get ready for bed, the sharp pains in my back started. I’ve been having them quite often recently and the pain reaches under my ribs on either side. I got back into bed and took more painkillers, this would have been my fourth dose of them. And, you’d think by 4 doses of high strength painkillers, I’d be in a comatosed state ready to sleep. Haha, nope. I lay on my side to sleep but the pain meant I had to switch sides every 10 minutes. I tried laying on my back but that hurt after a few minutes too. The pain in my knees meant that having them resting on each other hurt. My elbows by this point were in their own league of pain. I wanted to use my heat pad, especially on my back and sides but due to the heatwave, my room still resembles a sauna.

I tossed and turned until I finally fell asleep at 5.30am. I woke up at 9.30am but I managed to get a couple more hours in. I’m unsurprisingly knackered and my joints are still sore. I took a warm bubble bath this afternoon in the hopes that the heat would settle my joints, it didn’t. My back and sides still hurt and my body aches like I’ve been dipped in concrete. This evening there is a new pain in my ribs, it hurts when you press down, I’ve never had it before so I’m going to have to decipher a way to combat that tonight.

I haven’t done much today, I have just rested like my body has asked. It gets unbelievably boring though, there’s not much to do during the day on your own.

Lupus is most definitely active and frolicking around my body causing mayhem. Tomorrow is another day.

Ps, I’m taking a sleeping pill tonight.