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.

An insight to Lupus – Novemeber 2018.

Thursday 1st: I have pain in my back and abdomen, it’s a dull type of pain and it hurts to stand up straight. I have pain in my right shoulder. I can feel my fatigue heightening by the hour. There’s pain in my elbows and knees. I think I’m starting to flare.

Friday 2nd: I woke up with a headache, it’s in my eyes and temple area. I still have the back pain but today it’s stretching to my sides. My elbows have sharp pains in them but it’s mostly concentrated in the left elbow. The small joints on my left hand have a dull pain radiating through them. As the day progressed the pain and fatigue got more intense.

Saturday 3rd: I didn’t sleep well, I was tossing and turning all night and my headache from yesterday is still in tact. I’ve started to properly flare, horrendous pain in my elbows, knees and hands. My body aches and it feels like I’m lugging around a dead weight. My fatigue is at a high level, my eyes are constantly stinging and begging for sleep. The intensity of my symptoms got worse as the day progressed.

Sunday 4th: I didn’t sleep well at all, the last time I looked at the clock it was 3am. The pain in my elbows is intense. My knees started to hurt within an hour of waking. My headache is still there, I’m taking paracetamol and ibubrofren regularly but it’s not helping. The little joints in my feet hurt, a sharp pain. My fatigue is terrible today, it’s been difficult to keep my eyes open. My body aches from head to toe. My back has started to hurt again too.

Monday 5th: I slept well, for 12 hours in fact, and I only woke during the night a few times. However, it hasn’t made me feel better. I just wanted to go back to sleep when I woke up, I’m ridiculously tired. My headache has doubled in intensity and my brain feels clouded. I had pain in my elbows, knees and thigh muscles.

Tuesday 6th: I didn’t sleep well, I fell asleep around 2.30am and kept waking through the night. I had pains in the usual places: elbows and knees. But I had pain in my hips and thigh muscles again – a mix of sharp and burning type pains. My brain still felt clouded this morning and early afternoon. I had back pain at irregular intervals, which might tie into the hip pain? Before I went to bed the muscles in my arms had sharp pains too and the pain in my right knee got worse. My headache was nearly none existent today, which is something positive!

Wednesday 7th: I slept reasonably well but I did wake a few times throughout the night. My fatigue has been very high today, it feels like everything is an effort. I have bad pain in my right knee, my elbows and my back. The headache made a return this evening. I just can’t wait to go to sleep tonight.

Thursday 8th: I didn’t sleep too bad. But, it was still a bad day for fatigue. I barley did anything. I had bad pain in my knees and back and I had a headache throughout the day. It felt like a really long day. I had sharp pains in my hips and thighs at night time.

Friday 9th: I didn’t sleep too well, I woke up numerous times throughout the night. I’ve had a high level of pain in my elbows, a mixture of dull and sharp pain. I also had dizziness and pain in my hips whilst walking around some shops this afternoon. I’ve found it difficult to concentrate today. The pain in my right elbow got significantly worse by the time I went to bed and the left one wasn’t much better.

Saturday 10th: I slept the best I have in a while. Today started well, I thought it would have been a good day but by afternoon Lupus came out to play. My hip started to hurt, a tingling sensation with sharp pain. My knees were in a bad way whilst trying to fall asleep. My back is sore too, it’s hard to find a comfortable position to sit or lay.

Sunday 11th: Awful nights sleep, my back was sore, after 10/15 minutes of laying in one position, I’d have to change. I eventually fell asleep at 4.30am but it was still broken sleep until I got up at 9.30am. It was very difficult to keep myself awake throughout the day. Obviously, my fatigue levels were through the roof. Thankfully, the pain levels were at a bearable level today.

Monday 12th: I slept a lot better. I have pain in the usual places like my elbows and knees. By afternoon my fatigue levels crept back up and the joint pain started back up.

Tuesday 13th: I slept reasonably well but I kept waking from around 5am. Lupus is working it’s magic this evening with bad knee pain and sharp pains in my thigh muscles, I can actually feel my knees throb. There is some discomfort in my right hip. I have pain in both elbows but it’s not a severe as my knees. There’s a sharp pain in my left rib area and chest.

Wednesday 14th: My sleep was the same as the previous night, from early doors I kept waking. I have pain under my ribs, a sharp pain. I struggled to get going today and this afternoon my fatigue heightened. I had pain in my elbows, wrists and hands today but it seems to be settling for now. The pain in my knees doesn’t seem to be easing though. My skin is really itchy today especially on my arms and back, it feels like there’s millions of insects crawling under my skin.

Thursday 15th: I didn’t well. I was waking up often throughout the night which means my fatigue levels are quite high. I have the usual pains in my elbows and knees. The pain in my back is still there but it’s intermittent.

Friday 16th: I slept fairly okay, I still kept waking up through the night though. I had a bad headache today and my joints were quite sore. The back pain seems to be subsiding.

Saturday 17th: I slept okay but again, I woke up often. I have pain in my right shoulder today and my headache is still there. I had a sharp pain in my right knee which spread down my calf.

Sunday 18th: I slept well. I woke with a headache that lingered all day, it started in my temple area but soon went to my eyes. I had joint pain in my knees and elbows again. My fatigue was pretty high, especially in the afternoon and evening.

Monday 19th: I slept okay, not the greatest. I still have the headache but it’s not as bad as yesterday. My joint pain today is mostly concentrated in my elbows, specifically my left. It’s a mixture of dull and sharp and goes down my arm. I had hip pain, mostly in my right hip. I’m feeling quite tired today.

Tuesday 20th: I slept fairly okay but I was waking a lot. I was achy today, espcially in my legs. I had pain in my elbows and knees and some muscle pain in my upper arms and thighs.

Wednesday 21st: I didn’t sleep too bad. I’ve felt unbelievably tired today. I’ve had back pain, my head has felt foggy and I’ve had a headache. I had joint pain in my left wrist, the small joints in my hands (mostly left). And of course, pain in my knees and elbows. I felt feverish during the evening.

Thursday 22nd: I slept well. I saw the doctor this morning and I was put on anti biotics for an infection which explains the fever. I have intense pain in my elbows, wrists, fingers (mostly left) and shoulders. There is a mixture of a stabbing and burning pain in my left thigh and calf. I also have a headache and my fatigue is at a high level – all of the above symptoms are from one Christmas shopping trip.

Friday 23rd: I didn’t sleep too well, I kept waking. It’s been a really tough day, my whole body ached and I had pain pretty much everywhere. Every task was an effort to do. I’m still feeling quite feverish but I’m hoping the antibiotics bring that to a stop soon.

Saturday 24th: Again, I didn’t sleep too well, it took hours to fall asleep after taking a sleeping tablet at 2.30am. My fatigue levels are sky high, my eyes are stinging. I feel beyond achy today, it feels like I’m dragging around a dead weight. Again, I felt pain almost everywhere. I’m still feeling the effects of Thursday’s shopping trip.

Sunday 25th: I didn’t sleep well, it was a case of taking me hours to fall asleep again. I don’t feel as achy today but my fatigue is hitting a new height after the last few days and nights. I have joint pain in my elbows, wrists, knees and shoulder.

Monday 26th: I slept a little better but not much. I have an intense headache today. The aching body is back. I have pain in my shoulders, elbows and knees.

Tuesday 27th: I slept okay. I had a minor headache this morning but it has turned into a nasty one that is making me feel nauseous. It’s at the back of my head and goes into my temple area and eyes.

Wednesday 28th: I didn’t sleep well, my head hurt every time I moved. I had terrible joint pain, just holding a cup of tea caused pain to shoot down my arms. My headache hasn’t eased, it’s still in the back of my head, temples and eyes.

Thursday 29th: I didn’t sleep well again, for the same reasons and my headache is still with me. It’s the same, back of the head, eyes and temples. I’m getting really fed up with it. I had bad joints today too; elbows, wrists, knees and feet. I feel so exhausted.

Friday 30th: Yet again, I didn’t sleep well. My headache is still firmly in tact, it feels as if it won’t go away. If it doesn’t improve over the weekend, I’ll see the doctor. I had a strange mark on the left side of my neck which was itchy and later on pain started in that area. I’m still suffering quite bad joint pain in my elbows, knees, shoulders, wrists and feet.

Autumn & Antibiotics!

I managed 12 whole days of Autumn before getting ‘normal person poorly’. I originally thought it was a cold but on the morning of my usual blood tests and flu jab, I coughed up some blood, which oddly didn’t alarm me but I thought it was probably best to see the doctor, considering my circumstances of PPH (piss poor health). And, it turns out, you can’t get the flu jab if you have a fever, I need to go back and get that at some point next week.

I had white spots on my tonsils so the doctor believed I had the start of tonsillitis but they weren’t inflamed enough to start antibiotics that day. But, again, due to my piss poor health, he didn’t want to leave me without any so he gave me a delayed prescription in case I worsened over the weekend. He also said the blood could have been because I’m on anticoagulants and the force of coughing brought some blood up.

A few days later I started to feel dizzy, unbalanced and my right ear was muffled with pain in it that traveled down my neck. And, then my nose turned into the Niagara Falls, which miraculously dried up at night so I couldn’t breathe, turning my mouth into the Sahara Desert as I slept. My cough got worse and I’m sorry to tell you, I was coughing up green stuff. I was walking around smelling of Vicks and Olbas oil, there was no possibility of losing me, you just had to follow the strong stench of menthol. Which I personally couldn’t smell but I was told it was pretty potent. After a few more days of the above ailments, I decided it was probably in my best interest to get the antibiotics.

I read the leaflet and it stated they would help my chest if there was an infection, which I think there was. After a couple of days my throat started to feel better and my chest was clearing up, which is why I think there was some sort of infection. I thankfully finished them Tuesday, I say thankfully because I hate antibiotics, they always make me feel sick.

I do believe it started as a basic cold but because my immune system is so low, my body couldn’t fight it so it turned into an infection. And, of course, I flared – it was inevitable. The flare started with my fatigue levels heightening, all I wanted to do was lay on the sofa, watch rubbish TV and sleep. My muscles started to hurt and ache, my whole body felt like a lead weight, the muscle aches and fatigue mixed together made the smallest tasks feel immense. The headaches began to intensify and they lasted days, no amount of paracetamol and ibuprofen helped to clear them. And then of course, the mother of all my symptoms, the joint pain. It was mostly concentrated in my knees and elbows but I did have pain in the small joints like my fingers and toes. I also started with back pain, which isn’t a symptom I get frequently, it’s a pain that seems to come and go. I had pain in my shoulders, a dull pain but sometimes sharp.

The infections are cleared but it takes longer for flares to die down. I’m still struggling with joint pain, headaches that linger for days and my back is still sore. My fatigue levels are still pretty high but I also haven’t been sleeping very well, I’m on average falling asleep around 2am, which is very frustrating.

But, at least I’m no longer on the antibiotics, because like I said, I bloody hate them.

Heatwave, it’s not me, it’s Lupus.

My body is no longer designed to cope in high temperatures. I’m basically a real life vampire. I know what you’re thinking “you coped Turkey”, which is semi true, because some days I didn’t. The difference is, in Turkey I spent 90% of my time submerged in cold water.

At first, like everyone, I was overjoyed to see the sun. We have a roofed decking area with comfortable garden furniture, besides my bed, it’s my favourite place to sit. I grabbed my book and sat there for 20 minutes before retreating back inside declaring “it burns”. I told you, I’m a real life vampire. Except when I got up, my vision went blurry and I was dizzy. Which, in fairness, is a regular symptom of mine, it’s just happens more in the sun.

Because I have a stubborn streak, everyday I’ve been giving sitting outside ‘another’ go. Each day ends the same: I notice rashes, it burns and itches my skin, I get dizzy and blurry vision and try to get to the sofa without falling. The only time I can sit outside in the heatwave somewhat comfortably is after 5pm or if I’m somewhere in the shade.

I would be lucky if rashes, dizziness and blurry vision were my only symptoms to show during the heatwave. My fatigue levels have shot up, I’m getting regular headaches, I ache from head to toe and have joint pain. The joint pain is particularly vile in my elbows and knees, my most commonly affected joints. My hands are starting to feel stiff.

Yesterday I went shopping. A big mistake even though I was in shops for the majority of the time. I walked around with legs that felt weak, like they were struggling to hold me up. My joint pain was bad in my knees and my headache was bad, it felt as if I had been hit in the back of the head with a pan.

Since the heatwave started, every morning has been rough. I wake up feeling like a lead weight and I have to lay in bed until I feel a little stronger. It feels like I’m walking on sand and my brain can’t function properly. It takes me hours to come around and even then, I don’t fully come around.

Today, I woke up after a bad nights sleep and I struggled to stand up for longer than a minute. I felt faint, my legs felt like they were going to give way. My brain feels cloudy, my head and eyes hurt. My elbows and knees have pain shooting through them. I have pain in my lower back and sides, and so far, the dizziness and blurry vision is happening every time I stand up.

I’m beyond over the lovely weather because I’m struggling immensely to cope in it. Not everyone who complains about the weather is being a ‘Debbie Downer’, not everyone can cope in hot weather. And having limited resources to cool yourself down makes it harder. I honestly feel worse in England with the heat than I did abroad in Turkey.

Rheumatology Appointment: 14-06-18.

I’m sat writing this post and wondering if I should even write it at all. It was a mundane appointment, I’m not saying that past appointments have been a joyous afternoon outing. But, so much had happened between my last appointment and this one. To recap: Azathioprine temporarily stopped due to low white cells, steroids, crippling anxiety due to steroids…you can see why I thought it would be at least a little bit interesting.

I sat in the little waiting room, an elderly lady looked at me in confusion. Then another lady entered and she also started looking at me. It happens a lot, they aren’t used to seeing a 23-year-old in a department typically used by older people. I can see them studying me, trying to figure out why I’m there. I could tell them why I’m there but seeing the confusion humours me whilst I wait.

The regular checks of weight and blood pressure were fine. However, my urine flagged up again, it did at my previous appointment. My consultant remembered this and asked if my water works were okay, I told him they were fine and he wrote something in my file (I can’t read his writing so I couldn’t tell you what). But, as he wrote he said “we need to keep an eye on you”. It was just a urine infection for which I have antibiotics for. I know urine infections are common in Lupus but it made me wonder (with him asking if my water works were the same) if frequent infections are an early symptom of kidney involvement. Just for the record: my kidneys are fine and performing perfectly well.

On this particular appointment, I felt awful. I was exhausted and sore in most of my joints, I told him but he didn’t say much but then again there isn’t much he could say. He’s very matter of fact that I have an illness that causes fatigue and pain. I also informed him that I recently had a butterfly rash, which he put down to the warmer weather we’ve recently had.

I asked “did my white cells drop because my body couldn’t handle the higher dose of Azathioprine?”. Interestingly, he nodded but also revealed that someone of my age should be able to handle 200mg of Azathioprine (my dose was 150mg). He also told me that when Lupus is active white blood cells tend to drop, so he believes it’s a mixture of the two. I’ve been curious if he would eventually try and increase the dose again but when I asked he said no and reminded me that we have to test different doses out to find the best one for me.

If everything remains stable for 6 weeks, my fortnightly blood tests can be moved to monthly. I next see my consultant in August, a little bit early but he’s going to Canada for a conference. He said he didn’t want to wait until he’s back because it would be too long in between appointments.

Anxiety: the side affects of steroids they don’t tell you about.

Steroids are a miracle medication but 3 weeks into taking them, I now realise why people despise being on them. They come with unwanted and unpleasant side affects, and side affects can appear at random times – even if you have been taking them for weeks to months. Over the weekend, I was plunged into the side affect nobody talks or warns you about: anxiety.

Before I go on, because this is important to note – a couple of years before being diagnosed with Lupus, I was diagnosed with anxiety. This is usually controlled by slow release medication (propranolol).

I lowered my dose from 15mg to 10mg on Friday 18th May. I thought of this as a happy occasion. To me, it meant my time on steroids was decreasing. The weekend was quickly passing but my anxiety levels were quickly heightening. At this point, I could handle it by distracting myself with various activities.

However, Monday ran an entirely different course than the weekend. My heart was racing, I had butterflies in my stomach and a feeling of impending doom. My breathing would become heavy at random points throughout the day. During these attacks, I couldn’t sit still, I paced the living room with my racing heart and I began to get hot and clammy. I guess you could say these were panic attacks and they happened regularly throughout the day. When I wasn’t in a panic attack, I sat with the churning feeling and thoughts that something terrible was going to happen. At night, these feelings and attacks increased. I would lay in bed to fall asleep and it would start again, I’d sit up like it was an involuntary action. I started to feel mentally tormented and at some point in an attack, I bit the inside of my cheek and drew blood.

Realising this wasn’t normal for me, I put 2+2 together. I grabbed my phone and asked on Twitter if anyone had experiences of anxiety whilst taking steroids. 14 people replied to me and each person had experienced it, some saying they can’t take steroids anymore because of it. Someone told me if you have a history of anxiety, you’re more than likely to experience this side affect. I laid back down and I could hear the faint mumbling of my brothers TV. I turned my fan off so I could hear it better, hearing and knowing my brother was in the next room made me feel safe enough to sleep.

Tuesday went the same as the previous day. But by now, I was almost hugging myself. Hearing the cars outside put me on edge and I jumped at the door being knocked on. I looked at my steroids and walked away, I couldn’t bare the thought of taking them, knowing they were the cause of intense anxiety. Mum came home from work and I finally told her how I felt, she remarked how I looked on edge and anxious. I hadn’t eaten a thing all day but I knew in a few hours I’ll be taking my usual meds so I needed food. I had to force the meal down. As my bath was running, I held my hand out and it was trembling. Whilst in the bath I decided it was best that I saw the doctor the next day. I went to bed, this time bringing my dog for comfort. He must of sensed something was amiss because he slowly crept up to me, gave me a shower of kisses and slept by my side all night. I don’t care what anyone says, dogs bring a level of comfort and calm that’s hard to replicate. Knowing I had to take the steroids at some point, I took them right before I fell asleep.

I went to the doctor and told him everything. He said, because of the timing of reducing the dose and the anxiety starting, it’s most likely the steroids. He explained that steroids can cause mental disturbances. I asked, because the dose being only 10mg, if I could just stop them that day. He said if I stopped them without weaning, I’d end up in hospital. He emailed my consultant for advice on what to do, listing everything I had said and also stating I have a history of anxiety. I had to leave and wait for the GP to call me with what my consultant replied. I came home and tried to distract myself with various activities but not a lot worked.

I received the call today with what my consultant suggests. The weaning process has been sped up, I have to continue taking 10mg for the rest of the week. I will then reduce down to 5mg for a further week and then I’ll be free of the wretched things. My consultant is positive I’ll return to my normal self after the weaning process.

Everyone knows how steroids can physically affect you, weight gain and puffy face etc. But, it’s almost like you have to discover these hidden side affects for yourself. Nobody talks or warns you about this side of steroids, which is what prompted this post. If someone is on steroids and going through this, I hope they stumble across this post and realise it’s common but hardly spoken about.

In previous posts, I remarked how I didn’t think steroids were bad. However, I would now describe them as mental poison. I have felt nothing but dread and fear. This experience has restored my fear in steroids, there’s not a chance in hell that I would take them again.

The Daith Piercing: has it worked?

My conclusion regarding the effectiveness of the daith piercing is long over due, it’s been pierced for nearly 2 months. During that time, I haven’t encountered any major issues, in the last week it has felt a bit sore but nothing excruciating, more of a bruised sensation. I bought a bottle of TCP to clean it and it’s been fine since.

Since we’re on the subject of cleaning, I’ll state now that it has been a truly awful piercing to clean. You cannot see where you’re putting the cotton bud, which resulted in me getting annoyed with myself and having someone else clean it for the first week. I was told to use cooled kettle water and salt to clean it, I opted to use Epsom Salts rather than normal salt. I had to use the salt water for two weeks and cooled water alone for a further two weeks.

Healing wise, it’s doing well, a week after it being pierced, I totally forgot it was there which resulted in “oh shit, I need to clean my ear” moments. The piercer told me I wouldn’t be able to sleep on it for a while, but 2 nights into it being pierced, I was sleeping on it fine. It caused no pain or discomfort and in the first week, it bled once but it hasn’t since. Cleaning aside, it has been one of the easiest and pain-free piercings I’ve had. And for those wondering, you can still use in-ear headphones with the piercing.

But, has it worked? I’m pulling an ‘erm’ face whilst writing this bit and as you read on you’ll see why. In the first 2-3 weeks, I still had headaches but oddly enough, only on the right side and nothing on the left side (it’s the left side that is pierced). However, I then suffered a bout of insomnia which snowballed me into a long flare. The flare was so prolonged from my usual flares that I asked the question of “am I even in a flare or has my lupus just got worse? Can that even happen?”. The headaches started back up on the left side during the insomnia period, but I gave the piercing a pass because the headaches were the result of exhaustion. However, after being prescribed sleeping tablets and sleeping a decent amount, the headaches didn’t disappear and I’m still suffering some degree of a headache daily.

BUT, and this is why I’m sat on the fence, since getting the piercing, I haven’t had one migraine. I usually have at least 1-2 a month that can last days but it’s been nearly 2 months without one. Sure, I’ve had bad headaches but nothing that requires me to stay horizontal for days or makes me feel like I’m looking directly at the sun when there’s a light on. But, this could just be a lovely coincidence because if it’s stopping migraines, why isn’t it stopping headaches?

My conclusion is that it might be affective if you suffer from migraines alone. But, let’s be real, I have several auto-immune diseases, a piercing was a long shot if medications weren’t working. If you were debating the piercing, I’d still try it because what doesn’t work for me, might work for you.

For the sake of £20 I gave it a go. I have a nice piercing though, so it isn’t a loss or waste of time…every cloud has it’s silver lining and all that!