The post Christmas flare has hit

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

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

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

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

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

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

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

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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.

Impromptu Rheumatology appointment: 06-12-18 | Medication changes

I’ve been struggling with a terrible headache for over a week. I tried several over the counter remedies before I saw my GP. He prescribed me strong anti inflammatory medication and instructed me to call my Rheumatology nurse if they had no impact. I think it’s pretty obvious they had no affect on me because I was soon sat in the Rheumatology waiting room.

My joints have also been very sore and some are swelling. Due to my headache, I can’t take any of my pain medication for my joints because it induces or makes existing headaches worse. I’ve also had rashes on my arms, neck and hands. My fatigue is heightened and all I want to do is sleep. It’s been a very tough week and half which made getting to this impromptu appointment very difficult.

My consultant reminded me that my headaches are caused by small blood clots on the brain – which explains why nothing has offered relief. I did feel a bit silly going to see my consultant about a headache. But, being reminded that they aren’t ‘normal’ headaches and in fact blood clots, made me feel less of a wimp. There’s nothing I can do for it apart from wait for it to go on it’s own.

I told him about my joints and the inability to do anything to ease the pain because I can’t take my pain meds. There’s not much he can say for this because unfortunately it’s part of the Lupus fun package. But, it’s still important to tell him of all symptoms bothering me.

He has doubled my Apixaban (anti coagulants) dose. This, in theory, should help to stop the headache and prevent any further severe headaches. My Hydroxychloroquine (Lupus med) dose has been put back to 400mg, which is the dose I was on when I was first diagnosed. However, Hydroxy can take up to 12 weeks to get into my system before I feel any improvement. It will more than likely cause nausea/vomiting whilst my body gets used to the increased dose again. I also had blood taken.

My appointment for February still stands in place so thankfully I don’t have to wait long in between visits. For now, I just play the waiting game for my headache to disappear.

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.

Medication: 2018.

My medication has proved to be an interest to many people. Lupus needs to be controlled, if it isn’t then it would have a field day attacking all my precious organs and healthy tissue. I’ve noticed that Lupus patients discuss their medication with each other but rarely speak of it to others. This is not what every Lupus patient takes, treatment plans are unique to the patient.

Hydroxychloroquine / 200mg / Once a day: This is for Lupus. It’s hard to find a Lupus patient who hasn’t had experience with this medication. It’s the medication mostly everyone is prescribed when first diagnosed. It’s awful at first too, I had intense nausea for weeks and it can take up to 12 weeks before you feel it taking affect. I find it good for keeping rashes down, I initially started on 400mg but my Lupus needed something stronger, especially for pain.

Azathioprine / 125mg / Once a day: This is for Lupus. Azathioprine is the medication that suppresses my immune system, it’s the reason why I have to be extra vigilant around people who have something infectious, my immune system isn’t strong enough to fight things off. The correct medical term would be ‘immune compromised’. This is medication that buggered up my white cells and neutrophils earlier this year, resulting in an unpleasant experience with steroids (I’d have to be on my death bed to accept them again). It was only when I was taken off them for my white cells to recover that I realised that these dodgy coloured pills do in fact work a charm. Azathioprine is the reason I get reguar blood tests because it can affect your liver and evidently your white cell and neutrophil count.

Apixaban / 5mg / Once a day: This is for Antiphospholipid Syndrome. Once upon a time I took Aspirin to lower my risk of blood clots. However, my consultant believes I was having blood clots on my brain that ‘fizzled’ out on their own and that was the cause of my intense headaches. He decided to trial me on this, which is an anticoagulant – like Warfarin but it doesn’t require weekly INR testing. It lowers my risk of blood clots, strokes and heart attacks. My headaches have been reduced and they aren’t as intense. It was decided that Apixaban would permanently replace Aspirin. However, if you cut yourself, you know about it.

Carbomer eye gel / twice a day and when needed: This is for Sjogrens Syndrome. There isn’t much to say about it, it’s a gel I put in my eyes to stop them feeling dry. I’m one of those weirdos who can touch their eyeballs so I’ve had no issues with it. It works and I also use it if I have pain in my eyes which is usually a sharp pain or burning sensation.

Levothyroxine / 50 micrograms / Once a day: This is for Hypothyroidism. It gives me the hormone my thyroid is too lazy to produce itself. My thyroid is just slightly under active, hence the small dose. I haven’t felt different on this mediation but again, that’s probably due to my thyroid only being slightly under active.

Propranolol / 80mg / Once a day: This is for anxiety. This was the first medication I was regularly prescribed. I was diagnosed with anxiety years before Lupus but since developing Lupus it has heightened. It gets particularly worse on the days my pain and fatigue are at a high level. It works and if I miss a dose I start to feel anxious about the silliest things, like someone knocking on the door.

Lymecycline / 408mg / Once a day: This is for my skin. Since I’ve had Lupus my skin has decided to resemble the skin of a teenager. It works to an extent, it definitely tries but you couldn’t solely rely on it, you definitely need a good skin care routine to back it up.

Lansoprazole / 30mg / Once a day: This is a stomach tablet. All it does is protect my stomach due to taking so much medication. I can’t miss this tablet because I’d end up with horrendous acid.

I’m prescribed two pain medications, which I can request at any time from my doctor:

Codiene 30mg: I take 60mg at a time. Oddly, a lot of people can’t take codiene due to it hurting their stomachs. It does give me headaches so if I already have a headache, I won’t touch it because it’ll turn it into a migraine. But, I do find it to be helpful for my pain.

Tramadol: I very rarely take Tramadol, I can’t remember the last time I requested it. I tend to use it if I have a headache and can’t take Codiene. I don’t find it very helpful for pain. But, it is good for taking the edge off migraines.

At least one of these tablets give me vivid dreams and nightmares but I’m not 100% sure who to put the blame on but I think it could be Hydroxychloroquine or Propranolol. And, yes, I have forgotten to take them before, especially in the early days of my diagnosis. I now use a ‘med organiser’, which I have wrote about before. I also have an alarm set at 7pm everyday to remind me.

Reflection.

On a June night in 2015, I went to bed perfectly fine, I had no symptoms of any form of illness. I was more tired than usual but I put that down to working night shifts. I woke up with Lupus, which sounds like a bold statement but that’s exactly what happened. I was fine one day and I was sick the next day. That was how quick it was, it was as if my immune system went into self destruct mode as I slept.

In an odd way, and I think this is common for anyone with a chronic illness, I’m waiting for the day I wake up healthy again. I’m not naive and I know that won’t happen, it’s more of a dream of mine, to wake up and feel like I can tackle whatever the world throws at me. I spent 20 years as a healthy person but I’ll spend more years unhealthy. I can’t remember what it’s like to be healthy and the healthy version of myself feels like a character from a novel. But, that is exactly what is it, that chapter of my life is finished, it can’t be edited and there’s no room to write more. It reminds me that at any moment life can be permanently changed and you have to learn how to walk on the new path you’ve been given despite it being rocky and uncertain.

I often wonder if I was destined to get Lupus, as if it had been lurking in the shadows waiting to pounce on me. I wasn’t particularly a sick child, the only major issue I had was developing something called Idiopathic Thrombocytopenic Purpura. I was hospitalised for it and when I told my consultant about it he thought it was “very interesting indeed”. I can’t tell you why that was interesting because consultants don’t elaborate on matters that they deem ‘interesting’. However, it has made me wonder if ITP and Lupus are in some way connected.

The chances of a father passing Lupus to a daughter is uncommon. When my dad was diagnosed, my parents asked what the risk was for my brother or I developing the illnesses, they were told it was highly unlikely. In a sense, it’s slightly mind boggling that I have both illnesses. The first time I met my consultant he informed my dad and I that our blood tests were very nearly identical, again, this was something he found very interesting.

Sharing the same illnesses has brought to light just how similar I am to my dad. The obvious, I have the same illnesses, knobbly knees and weird feet. And then there’s the little things, a liking for spicy food, enjoying sweets and fizzy drinks a little too much. We’re both quite mellow people but we definitely make mountains out of a molehills. If we get an idea into our heads, it has to be done there and then. I would say I have a lot of my dad’s mannerisms too. It’s strange how I look so much like my mum but everything else is from dad.

As children, my brother and I weren’t shielded from my dad’s illnesses. But, our parents didn’t go into great depth because a child wouldn’t have been able to comprehend it. We just knew his immune system didn’t work properly and his blood clotted easily. However, at 15, I had to do a project in my Health and Social class. I had to chose an illness and research it, naturally I chose dad’s and that was the first time I delved into his illnesses. The more I researched, the more frightened I grew for my dad. I was saddened to learn he had pain daily, in my naive head, I thought he only felt pain when the illnesses flared. I became intrested in his health, I’d watch him fill out his medication and I learnt how to give him his injections. It didn’t cross my mind that in 5 short years, I’d be in his shoes battling the same illnesses, why would it? Teenagers think they’re invincible and I wasn’t immune to that mindset.

Life can be tipped upside, I didn’t expect this, I had my 20s planned out completely different. Things happen that we can’t change but we can grow with it. From someone who has had their health stripped away from them…please treasure and be thankful for yours. You don’t know how lucky you are to have it.

Rheumatology appointment: 30-08-2018

This visit to my Rheumatologist was a little early due to him going away.

The routine of the appointments never change, I check in and wait for the nurse to do the usual checks. My blood pressure and weight was taken, actually my weight was checked twice. I probably should have told her the 6kg loss was intentional and nothing to worry about when I got on the scales the first time.

My consultant asked how my headaches have been, I told him I still get them but they aren’t as severe since starting Apixaban. We discussed that a few weeks ago, my white cells started dropping again but they went back to a normal level without intervention.

I told him that I didn’t cope well in the heatwave which caused a flare. He wasn’t surprised by this as Lupus hates the sun. I also told him my joint pain has mostly been circulating my knees, elbows and wrists lately. He told me to keep taking codiene, paracetamol and ibubrofren for the pain.

He showed me my blood test results, my ESR levels, which in layman terms shows how ‘sticky’ my blood is, is the best it’s ever been. Overall he is happy with all the results, they are looking stable.

Due to my bloods looking good, I have made the decision to take myself off fortnightly blood tests. I don’t see the point in continuing such frequent testing if the results are stable. I’m going to call my GP tomorrow and book in for blood tests in 6 weeks time.

My treatment plan is staying the same. There isn’t any need to change any medications at the moment. Things started to go downhill for me back in April and there were times I felt extremely poorly. It doesn’t sound like much, but it means a lot to hear my consultant say he’s happy with how things are. He smiled at me and said “I’ll see you again in 6 months”. I’ve been waiting ALL year to hear I’m back at 6 monthly appointments. I guess I’m still winning, Lupus.