A final update on Azathioprine

It’s nearly been a year since I was prescribed this medication so I thought it was time to do a final update and for all my fellow sufferers, let you know my thoughts on this immune suppressant medication.

Immune suppressants are a serious thing, more serious than I originally thought. I first realised this when the packaging came with a warning label, reading ‘cyto toxic‘, I had no idea what a cyto toxic drug was which prompted me to research it. A cyto toxic medication means the drug contains chemicals that are toxic to certain cells. The next thing which made me realise that this isn’t a simple medication was the amount of blood tests you have to have. You even have to have your blood tested before you start the medication, the test is called TPMT – I later figured out this was to show how well your liver would tolerate and filter the drug. Mine was slightly low so my dose of Azathioprine will not go beyond 100mg.

At first, the blood tests were extremely tedious, they were initially every week for 6 weeks. Then they moved to fortnightly for 6 weeks and then to monthly for 6 months. I have now reached the end of the tunnel and my blood tests are once every 3 months, if I remain stable on the medication they may be moved to once every 6 months. I didn’t mind the monthly blood tests and luckily they fell on the same day my prescriptions were ready to be picked up. I believe the blood tests are for: full blood count, liver function test (as this medication can cause liver problems) and urea and electrolytes.

My consultant gave me a two-sided information sheet on Azathioprine when I firstly commenced the treatment. One side is more or less for my GP, a lot of medical jargon that I can’t understand but it did tell me how much blood work was needed and when. It was great to have a clear idea of how long each stage of the blood tests could potentially last. I was on my monthly stage for longer than expected, it was nearing 9 months, there wasn’t an issue or I would have been alerted – I just think they forgot to move me up to the 3 monthly stage until I subtlety asked “do you know when I’ll move to 3 monthly tests?”.  The sheet also educated me on vaccines and that live vaccines are not recommended on this medication – a reason unbeknown to me, but that I also needed the flu vaccination along with the pneumococcal (pneumonia) vaccination. I was also told to try and avoid people with mild ailments such as coughs/colds/sickness bugs etc, because my immune system would be lower than normal and I would pick the bugs up easily and struggle to fight them off.

Did I find this a miracle medication? Initially this medication helped with one symptom that I’m plagued by: headaches. However, this didn’t last long and I started suffering daily headaches again. I still suffer pain in my joints daily some days better than others but at some point in the day whether it lasts 5 minutes or 5 hours, I will have joint pain. I still suffer aches usually my back, arms, shoulders and legs – I suffer achiness more so in the mornings and evenings. I still suffer greatly with fatigue and it’s made worse by doing things or going places but I cannot fault the medication for not improving fatigue as I don’t believe any medication will help.

It doesn’t sound like Azathioprine has helped a great deal, but when I think back to when I was solely on Hydroxychloroquine, I am better and this medication has slightly helped. I can do just that little bit more on ‘good days’, however if I overstep the mark on a so called good day, I still pay for it on the days that follow.

Considering I was told I would pick up bugs and virus’ easily I have suffered from very few one being a cough at the start of the year that lingered for months. And more recently, a virus that spiralled me into a flare I couldn’t control and needed medical intervention. I have suffered very minor bugs but they seemed to be 24-hour bugs that I managed to fight off. I made a conscious effort to avoid friends and family with bugs, my friends have been greatly understanding of this and they cancel any plans if they or their children come down with a cold/bug. Of course, it’s harder to avoid with immediate family, especially when we are in the same house but they also make an effort to not spread their germs, they do this by not getting too close to me or touching me. I also keep a bottle of hand sanitizer in my handbag for whilst I’m out and I also have bottles in the house.

Have I suffered any side affects? Oddly enough, I have suffered none. I say ‘oddly’ because when I started Hydroxychloroquine (very tame in comparison to Azathioprine) I suffered horrendously with nausea and could barley eat. However, I have noticed a difference in my teeth, yes I just said my teeth…go with me on this one. I’m on a few online support groups for Lupus and I was alerted that immune-suppressants can cause dental problems. I asked my dentist this and she confirmed that they can indeed cause many issues. I have noticed that I can no longer use toothpaste that has a whitening agent in because it causes horrific sensitivity. And since I’ve mentioned I suffer many auto-immune diseases and take immune-suppressants, my dentist has started to put a fluoride gel on my teeth and gums at every visit, the first time she used it she told me “this lowers your risk of tooth decay”. I’ve also been told numerous times to use Sensodyne toothpaste and I did but that toothpaste is truly vile. It’s safe to say that I no longer put off going to the dentist and when I get my reminder letter, I’m straight on the phone booking in.

Would I change my treatment plan? At the moment, I would be very reluctant to change my treatment plan. It’s not a little change, it’s a whole new medication that I’d have to look into, potential awful side affects, possibly going through all those blood tests again and not to mention…learning how to spell it, seriously why are they so difficult to spell?! I honestly believe if I changed medication, a year later I would be writing about how I feel exactly the same. At the end of the day, the medication is there to control Lupus and I think Azathioprine is controlling mine, despite still suffering flare up, I have suffered no tissue or organ damage *touch wood this continues*. There is no medication that can eradicate the symptoms of Lupus. I once told my consultant “I think this is as good as it’s going to get” he didn’t verbally reply but gave me a nod as if to confirm what I just said was true. I will always feel Lupus because it demands to be felt. If my consultant was to propose a change in medication because he thought it would be best for me, then I would. But, for now I think I’ll stick to Azathioprine because like I said, I think this is as good as it gets…unless my teeth start falling out, then I’ll change my meds faster than a speeding bullet.

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The Glass Box

Years ago I attended counselling sessions for an issue unrelated to Lupus “it’s like you’re in a glass box, looking out on the world”. I didn’t think much of her words at the time, but now they are poignant to me. I was 17 and looking back I wasn’t trapped in a glass box. I didn’t enter a glass box until I became chronically sick.

I think a ‘glass box’ is a wonderful analogy for life with a chronic illness. Illness takes you on a different walk of life, life starts to revolve around your illness: have I put my meds through? Have I taken my meds? Do I have enough pain medication? If I do this, will I suffer? Activities that were once simple are now a burden and some seem impossible.

There is a door on the glass box, but it’s locked and there is no key available. There’s nothing inside the box and despite how hard you try, the glass cannot be broken to escape. There isn’t a soul on this Earth that can open the box from the outside. We are trapped within the box and like my counsellor said “looking out on the world”. We watch people go to work, school and social events. We watch people run errand after errand, watch them push their bodies to the limit in workouts for them to get showered and to move onto new tasks. We watch people do normal daily things that would break us, on particularly bad days the smallest of tasks can feel like climbing Mount Everest.

The glass box can be a lonely place, you’re trapped inside on your own but you can see and talk to people. You try to explain what’s wrong with you, how you’re feeling but to no avail. Nobody around you is trapped and they cannot enter to gain an understanding. You’re left with a lot of alone time, time often spent thinking about how your life was before you became sick and trapped. When you’re left with time to think, it often leads to frustration because you miss what you used to be – you miss being busy and active without a care in the world. There was a time you were watched from a glass box by an envious chronically sick person.

You start to accept that there is no way out and you learn to adapt to your new life. I’m starting to forget what my life was like before Lupus, most things have started to blur. I can’t fathom how I lived and got through my days, and that’s because it’s not normal to me anymore. Getting through a painful day, putting medications through and keeping track of hospital visits is now my normal. Some would find it sad that I’m starting to forget how I lived before I was sick, but to me it’s not important, if I remembered I would dwell on it and that would be detrimental to my emotional well being.

The Glass Box to me symbolises my own body and illness, boxes are unique to each person suffering a chronic illness – even if that illness is the same as mine. Before I accepted my new normal I looked out to those busy people from my glass box and thought of them as super-human for doing normal daily things. From the outside looking in, it looks like I don’t do much at all. The reality of that is I battle my body daily, my own body wants to kill itself and everyday I experience pain in every part of my body. I am weighed down by fatigue, because my body is tired from pain and from fighting itself. Accepting that I was sick with an illness that can’t be cured wasn’t easy and it took me a while but when I finally did, I realised its us, who battle themselves everyday that are the super-humans of the world.

Dear Lupus,

I hate to admit it but, you’re smart. You play hide and seek tremendously well, nobody believes me when I tell them I’m sick, you can even hide yourself when I have my blood tested. But, I have to ask, do you hide because you’re a coward? Or is hiding fun for you? Is this a game to you? Because, to me it’s not a game, it’s my life.

Why did you choose me? Did I do something wrong? You should of introduced yourself gradually, that way, I would have stood a chance at understanding you. For months, I was left confused, angry and upset at what was happening to me. I don’t frighten easily but you frightened me, all because you wanted a head start and introduced yourself too quickly. But, you like that don’t you? You like me to be frightened of you. It’s been two years, have you figured out that I’m no longer frightened?

It isn’t me that is causing the chaos, it isn’t me that declines invites and it isn’t me who cancels plans. I didn’t want to attend occupational health appointments, I didn’t want to be medically resigned from my job at the age of 21. I didn’t want to sit across from a nurse and answer questions, did you know my answers were scored? I was scored so they could see how sick I am, which is difficult to prove because you hide. Don’t you see? I’m judged daily by people who barley know me and by those who are meant to be close to me. Judged by people for YOUR actions. You think you make me look weak, but let me give you an analogy: you hide whilst I’m showing my face, smiling through the pain you cause, smiling when I know fine well I’m being judged. There’s not one person on this earth who can see you. Although I can’t see you, everyday I feel you because you demand to be felt.

What gives you the right to hurt people? Not only do you hurt people physically but you destroy them mentally. What’s enjoyable about reducing someone to tears because they can’t take the pain you cause for much longer? You make people feel useless, worthless and a burden to their loved ones. I can safely say, I have felt all three of those emotions. You have caused me so much pain and emotional discomfort that I’ve been curled into a tight ball on the floor and sobbed my heart out. It’s not just me you hurt, you hurt my loved ones, do you think they enjoy watching me walk around in a permanently exhausted state? Do you think they enjoy watching me suffer in pain? They don’t, and part of me dies when I see and hear the worry on their faces and in their voices. It leaves me feeling guilt ridden, guilt ridden for something beyond my control, guilt ridden for you because you feel no guilt.

They tell people you’re unpredictable, and for the most part you are. But, everyday for the last two years, I wake up and expect pain. And everyday for the last two years, I have received the pain I had expected. Sometimes I can bear the pain you cause but sometimes I think you’re too strong for me to fight and I start to believe this is a battle I have no chance at winning. But, that is a temporary thought because I’m playing you at your own game and I will only let you win for so long.

What exactly is your plan? It’s clear to me that so far this has been child’s play and you can and will do worse. The doctors and researchers tell me that death by you isn’t common anymore. But, that’s not to say you won’t try, will you eventually grow bored of me and give it all your might and end it? Because I will fight back with every fibre of my being. I’m too stubborn to go down without a fight. Did you really think I wouldn’t research you? From day one I’ve known you have the power to kill me and I even know how you’ll possibly do it. Do you know how that feels? To have a need to read up on things like that? The first few times I attempted to read about you, I stopped each time death was mentioned. It was tormenting.

Thank you, yes, I just thanked you. Because you have taught me many lessons, one being that you must find the positives in every situation no matter how tough and devastating those situations are. I have found a world of incredible people, people who battle you and other debilitating illnesses everyday. I have gained an eye that can see pain that isn’t visible to the majority of people, I have gained a level of empathy most people couldn’t fathom. I have realised it’s not the things we own that matter, it’s the people around us. I have gained strength and I carry hope with me everyday and I will never let it go. It’s likely I wouldn’t learnt these things without you, but these are things you can’t take from me.

I’d love nothing more than for you to leave, but you’re here to stay. Whatever you try and however hard you try, always remember that this is my body and my life. I’m done with you taking things away from me and no matter how much pain and devastation you cause: I will not give you the satisfaction of giving up.

Regretfully,

Emily Holling.

I recently had one of my worst flares to date…

The start of August wasn’t great, my Lupus intensely flared up. I picked up a virus and due to that, it went haywire causing an array of issues. I’m late writing about this, it happened from Saturday the 5th of August to, well, now as I’m still recovering. You unfortunately don’t wake up one morning recovered from a flare, it can take days to weeks or even months to recover.

Friday the 4th, I was my usual self, maybe a little more fatigued than usual but nonetheless – nothing dramatically wrong. However, that night I slept dreadfully, I fell asleep around 3am but even then I woke every hour with a nauseous feeling. Every time I woke up, the sun was getting brighter and at around 8:30am I decided to just get up. I sat outside with a cup of tea and by 9:30am decided to try go back to sleep, as soon as I got into bed I was back up and vomiting. By 12pm I had vomited 3 times and had given up on sleep entirely.

Sunday the 6th. I woke up, from another sleepless night and feeling worse. This was the day my Lupus started to rear it’s ugly head. I was sat drinking water and I was almost certain I was about to faint, luckily I didn’t. But, I was shaking, my head was pounding, my joint pain was relentless and I started vomiting again. Just keeping my eyes open was exhausting and I couldn’t bare the thought of moving. I couldn’t even tell you what conversations I had and with who that day, I was so exhausted and in pain I can barley recall the day. What I can recall though, is it was the first time since my diagnosis that I rang out of hours for help. I was taking Tramadol and even though it dulled the pain, it wasn’t helpful and I was still suffering. They told me I had to see a doctor and on the way there I said to myself “I can’t be bothered with this illness anymore” because I genuinely didn’t have the energy to try and fight back. I wanted to curl in a ball, cry and honestly, disappear. Luckily, I was the only one in the waiting room so my wait was less than 5 minutes. The doctor took my temperature and it was raised, checked my ears and listened to my chest and they were clear. He checked my throat and he said it was red, he had me do a urine sample which was also clear and he checked my stomach which was sore as he pressed down on it. His diagnosis was a virus or the start of laryngitis, since the visit my throat hasn’t got worse so it was a virus all along. He couldn’t prescribe me anything stronger than Tramadol, so he prescribed me more to keep taking. After the checks and prescription were done he had a chat with me, he told me I need to get my Rheumatology appointment brought forward and told me that I really need to go on steroids. As soon as I heard the words “you need steroids but I can’t prescribe you them” I wanted the ground the swallow me. From the start of my diagnosis, I have been dead set against going on steroids unless I’m told I will die without them. I am yet to bring my Rheumatology appointment forward for the fear of being put on steroids.

This week has been rough. I’ve eaten next to nothing, my joints have been so sore and my fatigue just doesn’t seem to be improving – it feels like I’m at a dead end.
I try my very best to stay optimistic but this week has tested me, I’ve found it very difficult to take part in everyday activities and do basic tasks and I’ve felt extremely low in mood. I hate the thought of people thinking I’m snappy or horrible, I try my best to not be and it’s for those people I try my best to keep a smile on my face. My mood is slowly improving but I’m still struggling with a lot of pain, aches, headaches and nausea, but thankfully I haven’t vomited since Friday.

It’s the first viral infection I’ve had since being put on immune suppressants, which is good going as I have been on them since November. I was told I would more than likely constantly catch viruses and bugs. And, because of my lowered immune system it’s taking longer for me to shift it.

I can only hope that I start to properly improve this week. This has probably been my worst flare to date.

Lupus and being abroad: diary entry 5. Would I recommend it?

I’m back in little old England, I landed at 5am this morning after the most dreadful flight – a toddler screaming for the majority of a 4 and half hour flight isn’t what anyone wants. I started travelling last night at 10pm Turkish time (8pm British time), so it was a long night of waiting around and what seemed like endless security checks at Dalaman Airport. 

I was awake for just over 24 hours, which is a risk in itself with already having chronic fatigue, you never know if forcing yourself to stay conscious for such a prolonged period of time will cause a flare up. For me, it usually does, I’m currently feeling extremely fatigued, aching, headache and I keep getting waves of nausea. 

Before I get to the whole “would I recommend putting yourself in blazing heat with a illness that hates heat” discussion I thought I’d recap on my final two days.

Thursday: Wonderful, despite the temperature reaching a firey 40+° and me being on codeine for joint pain in the knees. I was under a parasol for the whole day and yes, probably completely oblivious to the fact the temperature felt like fire around me due to being on codiene. It was our last day on Coco Beach, we stayed on the beach until the Garson no longer took orders. I honestly couldn’t tell it was that hot but again, codeine was clouding my mind. On the evening we walked around Icmeler, catching up with friends from a previous year of holidaying. It was just a lovely day. I took tramadol that evening and slept better than I did the whole holiday. 

Coco Beach.

Final dip in the sea at Coco.

Friday: In contrast to Thursday, this was a horrible day. It was 45°, that’s what the barman told us at around 5pm so during the afternoon it was probably hotter. My day started later, I got to the private jetty at 10:30am. I couldn’t cope. I was in and out of the sea like a yo-yo, as soon as I was out, I needed to go back in. I felt like I was going to hit the deck at any moment. We went for lunch and sat in the shade with cold drinks, that seemed to bring me back around. As soon as we got back to the jetty, I deteriorated again. It’s like a sense of being restless because you just don’t know how to gain control of the symptoms you’re experiencing. In the end I left the jetty and went back to the room and laid on the bed for about 30 minutes, I took a shower and then started packing. There’s absolutely no way I could of sat in the sun any longer. As you know, by nighttime I was embarking on my long journey home. It was an extremely long and tiresome day. 

Would I recommend it? Yes. Do it, go on holiday. Lupus strips us of so many things in our lives. We put up with so much, we’re beaten down by our own bodies daily – why shouldn’t you be rewarded for being a total badass and fighting yourself daily? 

Yes, there will be bad days, but don’t feel guilty for needing to go rest in your room or sit in the shade. If I’m honest, I spent the majority of my holiday in the shade, I didn’t put myself in the sun for prolonged periods of time, if you do that then you are asking for trouble. I understand some Lupus patients suffer a considerable amount in the sun and their rashes turn to big blisters, it’s a no-brainer on why they avoid holidaying abroad. I do suffer in the sun, it does bring me out in rashes but not the extreme scale that it blisters. If you react moderately well in the sun, try it. It’s 14 days out of 365, you have nothing to lose by trying it. So what if I flared? I was going to flare anyway with the damp weather in England. Instead, I chose to flare in the sun and a waiter brought an ice cold drink to my lounger. You see, that’s the point, we flare in cold weather and we flare in hot weather…we can’t win. 

Some people are probably still wondering why I did it to myself, I technically brought bad days upon myself. Why? Why did you make yourself suffer? And the only answer I have for that is I refuse to let this illness control every aspect of my life. I will never bow down to it. And I certainly will not let it frighten me, not now and not ever. 

Lupus and being abroad: diary entry 2 (19/6/17)

I wouldn’t say today was a write off, but it wasn’t the best day. I didn’t expect my first “bad” day to be on my third day here, I expected it to be at least 5-6 days in. But, I guess that’s Lupus to T – unpredictable. 

What confuses me the most is, today is cooler than yesterday, there’s more of a breeze. I mean, yesterday Lupus had its moments but it seemed to clear after an hour or so – especially after cooling off in the sea. Not today, I can’t shift it. It’s a feeling I struggle to describe (I say that a lot, don’t I?). My eyesight goes fuzzy and I get lightheaded, sometimes I think I’m about to faint if I don’t sit or lay down. My head starts to pound or feels like it’s swelling. It’s generally just a very uncomfortable/unwell feeling, which sucks whilst you’re trying to have enjoy your holiday. 

I did find myself some shade to sit in whilst having a cold drink, that seemed to help a little. During my shaded rest, the sun crept behind the trees which shaded my sun lounger so I went back to lay there and continued reading. All I’ve really done today is read and drink very cold drinks with ice in – I can actually enjoy a drink with ice in as I’m practically Raynauds Phenomenon free for 2 weeks. Saying that, I haven’t dipped in the pool all that much today because as soon as I get in I’m covered in goosebumps, but it is a very cold pool, but it hasn’t aggregated my Raynauds at all. 

I’m very tired but again, it’s a mix of the heat, general Lupus and I’m probably still recovering from the travelling. I haven’t suffered too much from joint pain, it’s still there especially in my knees and elbows – as I’m writing this it’s starting in my left wrist. Just like at home, it comes and goes when it pleases. I’m still regularly taking paracetamol and ibuprofen, I don’t really want to touch codeine in the day time. I don’t want to be in a haze in high heats or around water. I’ll take it on an evening before going to sleep. I’m still chugging water like it’s going out of fashion but my favourite drink today has proven to be Orange Fanta, it’s a bit more refreshing than plain water. 

I seem to be taking the sun well on my poor feet, I’ve been sat with my beach cover up over them as they feel like there on fire! My ears too, apparently the sun has taken a liking to those. Don’t worry, I won’t be returning to the UK with just tanned feet and ears – the rest of me is tanning as well. 

I’m back in the hotel room now, with the air conditioning. I’m probably going to lay on the bed for the rest of the afternoon to try make me feel a bit more human. Mum and I will probably venture back out in the early evening.

I’ll be sure to keep this updated as much as I can. Thank you for reading! 

The never ending circle of fatigue 

Fatigue is one symptom I struggle with the most, I have days where I think I have it somewhat under control – what I mean by that is I can do more basic daily tasks than I did the previous day. I wanted to do a post covering it, in the best way I can because it’s something I struggle to describe but I’ll try my best. 

Have you ever been so tired that you have thought to yourself “I feel like I could sleep for a week”? That’s how I and millions of Lupus sufferers feel every second of everyday. 

I don’t think people understand the enormity of my fatigue, I’m often advised to take a nap to help me come around. I’m also told that if I do more I won’t feel as tired, but how can an already exhausted person find the energy to do more? My tiredness is not like a ‘normal persons’ tiredness, it feels like I’m drowning but I can’t escape and nobody can pull me from it. It’s not being able to think straight or concentrate on a conversation. It’s being in a foul mood, things annoying you that shouldn’t annoy you. It’s curling into a ball and breaking down because you think you’ve reached a new level of exhaustion: you haven’t, you can sink further. Nothing helps, not sleep, not coffee, not over priced energy drinks and not a special fancy diet. 

You’d think I’d fall asleep at any given point but here’s a twist: insomnia. Yes, you read that right. A girl who is so weighed down by fatigue often struggles with insomnia. It could be pain keeping me awake or I just can’t fall asleep, take last night for example – I didn’t fall asleep until 4am and even then it was broken sleep. 

I think the hardest part about fatigue, like this illness – you can’t see it. People think I just want to lay in but I can’t physically or mentally function on a morning. If I go out wearing make-up, the dark eyes are covered up so people usually think I’m being dramatic and they think I mean I’m a little sleepy but what I actually mean is “I’m so tired I don’t think my legs can physically hold me for 5 more minutes”. However, sometimes you can see it, my complexion becomes very pale apart from my under my eyes, they turn extremely dark. This is when I look very unwell. It’s when you can see something isn’t quite ‘right’ with me. It’s at this point of fatigue I can’t even bare to talk to people, I don’t have the energy to lift my arms up. I don’t move, I stay in a silent ball wrapped up in blankets. 

Fatigue affects every aspect of my life, it causes me to feel nauseous and on numerous occasions I have vomited from being exhausted. I have explained in past posts that every so often I struggle with poor appetite, and that’s because the fatigue (and other symptoms) destroys it. Sometimes I get up and have to rest upon a wall because I think I will faint. I have had to catch myself numerous times to avoid falling. I can be stood for 5 minutes which to me can feel like 5 hours. I will lay on cold tiled floors and find it as comfortable as a bed because I’m exhausted. I can’t tell you how many times I’ve sat on my bathroom floor and just looked at the shower that I need to step into. I sleep for 10 hours straight to wake up feeling as tired as I did when I got into bed the previous night. If I’m the middle of a conversation with you and it looks like I’ve switched off, chances are, I have. Don’t be offended, the same thing happens with the TV and reading. I struggle to concentrate on certain days. 

You have to remember I am fighting my own body everyday and that has to have some affect on my energy levels. I have to work much harder than others to get through my day, even if that looks like nothing at all. 

If you have someone close to you suffering a chronic illness, understand that when they say they are exhausted they truly are. Please don’t get angry if they leave an event early, it has taken so much out of them to be there. Please don’t get upset if they cancel plans or don’t do something you asked them to do. We try, we really do, but sometimes we try too much and it backfires. Patience, sincerity and understanding is all we ask for. 

Monday 17th October, 2016.

I slept bad last night, for once it’s not Lupus causing poor sleep. My top and bottom wisdom teeth have decided to start coming through. Well, I say start but they’ve actually been coming through for a while now, it’s only now and then it causes pain. I woke up every couple of hours, the longest I was awake was 2am-4am. I eventually drifted back off when my next dose of pain killers kicked in. I woke up about 7.30am and decided to just stay awake. Tossing and turning eventually got dull. 

Given my bad night sleep I’m pretty much exhausted. I mentioned in my last post that I was struggling with fatigue and I still am. I just can’t seem to shake it off. I wake up and my eyes are burning, it’s like my body is begging me to go back to sleep. I have zero motivation for anything and everything just feels like a massive task at the moment. Although, I did go shopping with my mum on Saturday, I wanted to get out from the four walls that constantly surround me. I finally saw Alice Through the Looking Glass, Alice in Wonderland is my all time favourite fairytale…if you’d class it as a fairytale? I love it, and the Mad Hatter, he’s my favourite.

Since my fatigue has been bad, so has my appetite. I discussed my eating with my mum on Saturday whilst sat in a cafe, we both agreed I don’t eat nearly as much as I should. I just never feel hungry or feel like eating, sometimes the thought of eating a meal feels more like a chore. That could be the fatigue coinciding – too tired to sit and eat a meal. There is days I don’t eat at all, sometimes it’s nearer 2 days before I will eat something. Sometimes it gets to about 7pm and I remember I haven’t eaten yet and I’ll just eat something because I know I need food. Most of my calorie intake comes from drinks. I definitely think fatigue and appetite are closely linked. It’s a viscous circle, it’s common sense that food gives you energy, but what if you have no energy to eat or the thought of food nauseates you?

The last few days I’ve had a dull ache in my back, it’s not a major or crippling pain. I’ve decided the ache is too low down to be associated with my kidneys (kidney problems are common in Lupus). I think it’s more muscular.

Despite alternating paracetamol and ibuprofen every two hours for my teeth I still have a niggling headache. Niggling in the sense that it’s up and down in severity. It seems to be holding off most of my other symptoms, however, my knees have a stopping and starting pain in them.

I’m starting to grow nervous about my next consultant appointment, I have an ever growing list of things to discuss with my doctor. One thing is my skin, I posted a question in a Lupus support group asking if anyone else has suffered bad skin since diagnosis, they have! I’m glad that I’m not the only person, I tried researching this on my own but I couldn’t find any solid answers or evidence that Lupus can cause bad skin. Obviously I will mention my headaches, usually that’s his first question anyway. I think I’m anxious at the thought of him trying me on a different treatment, the next one is Methotrexate – if you look it up, it sounds like a horrible drug and I’ve heard it’s more affective in the form of an injection. I also think I’m anxious because as I’m in the waiting room, it’s really the only time I sit and think “woah, this gig is actually for life”, that sounds silly I know, because I obviously know my diseases aren’t curable. I don’t usually give the whole ‘it’s not curable’ much thought, maybe that’s hope that one day it will be, I don’t know. Between my appointments, I’m constantly making a mental list of what’s got better or worse, what’s changed or what’s new and over the months, it just seems to grow. 

My hair, it’s started to fall out again. I’m not particularly worried about it, I have quite thick hair. You might look at the picture and think “it’s not that much” but it’s still disheartening to see it fall out as I brush it. It’s like a bitter reminder that my immune system is screwed up. I’m just clinging to the hope it stops or doesn’t get worse. 

I’m holding up pretty good all in all though, just struggling mostly with fatigue and my appetite. I’ve rambled enough and need to sort my medication out. Thanks for reading!

*I can see how many times this blog has been shared by family, friends and friends of friends. I can also see how many people have been on here from Facebook to read my posts, I just can’t see who you all are! So I’d like to say thank you to everyone who has read and shared my blog. I truly appreciate it, you’re helping raise awareness which is why I started this blog in the first place. Thank you so much! Much love to you all – Emily xo*