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! 

Rheumatology appointment | 1-6-17.

Hello! It’s been a while since I’ve updated you all – I’ve said it before but I haven’t really had any ideas regarding posts. That being said, I’m going on holiday later this month and I’m planning to write posts whilst I’m there. They will mainly be concerning how I’m handling the heat, as many of you have probably guessed that Lupus and heat typically don’t mix very well. But, I’ll be damned if Lupus stops me going on holiday! 

 I had my check up with my consultant earlier this month. There was a 4-month gap between this visit and my previous appointment, which is fine but Lupus is so unpredictable and changes daily that it’s near impossible to remember and tell him all symptoms I experience in between visits. I tend to highlight the most bothersome and most occurring symptoms to discuss. 

All usual checks (those being: weight, blood pressure and urine) were absolutely fine. One of my first points to make was my headaches are staring to re-occurr again except there is a slight change, sometimes they aren’t particularly painful. They feel like a pressure – I describe it as feeling like the Red Queen from Alice in Wonderland with her huge head because it feels like my head is just swelling and could burst at any given moment. He asked how long this sort of headache lasted and I said it could be anything from an hour to a day. Aside from my Red Queen headaches, I do still get my ‘usual’ headaches that can be anything from mind to excruciating. A few weeks ago I had a migraine that lasted several days. 

My next point was sleep, it’s becoming an issue. I told him I typically fall asleep fine, my issue is staying asleep…which made me look like a liar because I couldn’t fall asleep last night, I eventually went to sleep at 9am this morning for a grand total of 4 hours. He asked if there was a reason why I struggle to stay asleep, sometimes it’s pain but others there’s absolutely no reason for me to keep awakening. I told him it’s odd because I’m chronically fatigued, to which he assured me it’s a common issue with Lupus patients. We discussed treatments but he told me he would be hesitant to prescribe them because of the addictive nature of the medication, which I fully understand and accept. I admitted to sometimes using over the counter remedies, which he was fine with. 

My final topic was holiday advice, at first he said don’t go…but then he gave me actual advice – things I already knew but I thought it would be best to throw it in there in case he had any other tips. I have to get a hat, wear factor 50 suncream and apply it often, drink a lot of water and to try Turkish watermelon…doctors orders, I’ll have to get myself the biggest wedge of watermelon I can find! 

I didn’t have any blood taken at this appointment, I get it tested so often by my GP that it would have been a waste of time. All my blood tests are fine and I’m still tolerating the medication. He said although I’m still experiencing symptoms, it’s in my best interest to stay on my current treatment plan. It came across to me as a kind way of telling me this is as good as it’ll get. I’m at a point where I fully understand I probably won’t ever be symptom free, I just want it under control as best as it can be. 

My appointments with my consultant have gone from 4 monthly to 6 monthly and that’s good news to me. 

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. 

Rheumatology appointment 2-02-17.

I had my routine appointment with my Rheumatologist today. There’s honestly not much to talk about but I thought I’d write about it anyway since I’ve wrote about the others. Sometimes the appointments are really short and sweet because there’s not much going on or any major changes. Today was short and sweet. 

My weight is fine, I’ve lost a little more weight since my last appointment. This seems to be the case at every appointment, I’m starting to think their scales are broken. My blood pressure is fine, my consultant said it’s “wonderful”, it’s 103/73 which I thought was low but I guess it’s wonderful. 

I have recently been slightly concerned that something was going wrong with my kidneys, I’ve had a dull ache/pain in my back. I think it’s just in my mind that kidney involvement is very common in Lupus. All tests that would show any kidney involvement are fine, so my mind is at rest. I guess it’s just a new pain I have only just met. It’s not constant, sometimes it’s there for a few hours, sometimes a day or two. It’s weird, but then again so is Lupus. 

All my blood results are fine, there was probably a lot of them for him to look at since I’ve been having them weekly and now fortnightly. I didn’t get any blood taken at this appointment due to them being fine and having them done so consistently. I actually imagine the pathology department receiving my blood and eye rolling “this girl again?!”.

He asked me the usual questions headaches? Joint pain? Dry eyes? I told him my headaches aren’t as severe or as consistent on the new medication but I do have one today. I also told him I still get joint pain but I think a lot of that can be blamed on the damp weather, and oddly my right eye has been drier than the left. 

I see him again in 4 months time and we have agreed to stay on my current treatment plan of 100mg of Azathioprine and 200mg of Hydroxychloroquine.

I ended the appointment saying “I think this is it now, I don’t think I will get better than this” which might seem like a negative thing to say but I genuinely don’t think I will. He nodded and asked “do you think?” I think his nod confirmed that what I said was right. 

Tuesday 4th October. 

It’s been a relatively productive day. Productive for me anyway. I cleaned the house, got my nails done and walked my dog. You’re probably thinking “what’s so great about that, I do that stuff every day”. I usually struggle to do tasks one after the other, saying that I didn’t do it all one after another, I took breaks. In fact, my day didn’t start until this afternoon. 

My mornings are typically slow. I stay in bed for about an hour, check my messages, social media and the news to see what’s happening in this crazy world. Once out of bed I make a drink and sit curled up in my dressing gown on the sofa. By this point I’ve usually established what kind of day it will be. I woke with a headache today and usual aches and pains in my joints but not severe enough to stop me in my tracks. So I decided today, I will get stuff done!

I cleaned the house bit by bit, taking a break in between rooms. If I didn’t take those breaks I wouldn’t have been able to do the other parts of my day. 

I called the salon to make a nail appointment, luckily she could fit me in this afternoon. I didn’t get anything fancy, just a gel manicure to help strengthen my nails. It was nice getting out, even if it was just to my local salon. 

Once home, I sat down and had a rest. I decided since I feel up to it I’d take my dog out for a walk. Today is my favourite type of weather, it’s not cold but it’s not hot and there’s a slight bit of wind. This weather is my favourite because I can be outdoors and not be majorly affected by the weather. I enjoy walking, if I could I’d walk miles but I can’t, so on days like today I really appreciate it when I’m out – especially if it’s my favourite weather too. 

I’m back home now, in my comfortable clothes. I’m going to make a hot chocolate and rest for the evening. 

Although I’m now tired, getting sore and have a still have a headache, I feel happy and satisfied with my day. I can go to sleep tonight knowing that for me, it was a productive and successful day. 

Walking Theo.

Sunday 18th September. 

It’s a bad day. I knew as soon as I woke up. My legs and shoulders were aching massively, my head was throbbing and I had joint pain. When you wake up like this, it’s rare you will pick up throughout the day, in fact you’ll more than likely just deteriorate. Which I did. 

It was my friends sons 1st Birthday today, I missed it. I feel pretty lousy about it too, I know what you’re thinking “it’s a 1st Birthday, the kid won’t even remember” but that’s not my point, my point is that due to this illness I miss a lot and sometimes it sucks. Today was sunny, or so I hear, I didn’t go outside to know if it was or not. So if I did go to the party I probably would have suffered more anyway. It’s a catch 22 kind of thing. 

I got my morning wash hours after awakening. Grim, I know, but I had to muster up the energy to do it. I brushed my teeth and afterwards sat back on my bed for around 20 minutes. Then I had to cleanse, tone and moisturise my face. And yes, I HAD to that because this disease has given me a complextion that resembles a pepperoni pizza or a dot to dot drawing.

I have spent my day in my room, doing absolutely nothing productive. I’ve been watching my family go about their day full of energy, oh how I envy that. It’s days like this I wonder what it feels like to have a body full of energy to do one task after the other with no breaks in between. I’ve been tired all day, that’s nothing new to me but today I’m extra tired. There’s no reason for me to be extra tired I slept for over 13 hours last night. No, I didn’t oversleep, that’s just Lupus. 

I’ve felt down today, again I have no reason to feel down. I just do. I don’t really feel like talking, I just want to lay in my bed where it’s quiet, warm and comfortable. Actually, when I think about it I do have a reason and it’s because I’m in pain. Everyone gets down when they feel like crap.

My appetite has been next to none, I’ve grazed on crisps, terrible I know. I did make soup this evening but I didn’t even have half of it. I just don’t feel hungry and there’s nothing I particularly crave eating. 

My headache dulled down earlier this afternoon but it’s been there all day. Now it’s built back up, and it’s going to my eyes. I hope it’s not the start of a migraine.

My joint pain has been moving around, at some points it was in my knees then elbows and so on. Currently it’s in my left elbow, right knee, my right thigh and my lower back is starting to hurt and ache. My jaw even aches, yep, my jaw. Just by writing this post my right wrist is starting to hurt and ache, so are my fingers. 

I’ve felt dizzy today too, everytime I stand up I get lightheaded and my vision goes a little funny. I got a warm bath earlier this evening in the hopes it would help my aches and pains but I got too lightheaded and had to get out after 10 minutes. 

I’m struggling to concentrate, whilst eating my soup I zoned out, you know when you stare at one object for a prolonged length of time and people wave their hands or click their fingers at you? I did that. I’ve done it several times today. I think it’s tiredness that causes the lack of concentration. If this post makes no sense or lacks grammar, you know why. 

I’m currently psyching myself up to get my teeth brushed and to get through the whole cleanse, tone and moisturise shenanigan again. I’ll get round to doing that in about an hour or longer. Until then, I’m going to lay in bed watching The Big Bang Theory and take some pain meds. 

Tomorrow is a new day, hopefully it’s a better day. I want to get some fresh air, hopefully take my dog out for a short walk, luckily he’s tiny so I don’t have to endure walks that are miles long. Maybe even FaceTime my friend overseas or pick my new glasses up. 

Goodnight, thanks for taking the time to read. 

Meds, meds and more meds!

I don’t take that much medication but put me next to another 21 year old and it will seem like a lot. This post is listing all medication prescribed to me and the side affects that came along with them. 

Medication for Lupus: Hydroxychloroquine 200mg one taken morning and night. The side affect to this was feeling nauseous shortly after taking it. I was prescribed Cyclizine 50mg (anti-sickness tablet). Since my body has gotten used to hydroxychloroquine I don’t really need them, but they do come in handy! However, after starting them I developed acne, not major acne but enough spots to knock my confidence. I started a good skin care regime which helps but the spots are relentless. Apparently this is not a common side affect, I originally thought I developed acne from the stress of being sick but after a chat with my doctor, it’s the hydroxychloroquine.

Medication for Antiphospholipid Syndrome: Aspirin one 75mg tablet daily. This is to reduce my risk of a blood clot. I stated in another post that the side affect to this is bruising. I’m like a peach, a slight knock and I’ll get a lovely bruise added to my collection! If I do develop a blood clot I will be put on Warfarin. Lansoprazole one 30mg tablet a day, I’m putting this here because I take this to protect my stomach against Aspirin. Continous use of Aspirin can cause stomach ulcers. 

Medication for Hypothyroidism: Levothyroxine one 50 microgram tablet a day. This is pretty much self explanatory, it keeps my thyroid at the level it should be. I have no side affects to this medication at all. However it’s important I have regular blood tests to ensure I’m on the correct dose. 

Medication for Sjogrens Syndrome: Since the only symptoms of Sjorgens I get is dry eyes and mouth I don’t take medication for it as such, but I use Carbomer Eye Gel. There isn’t really a specified dose, I was advised to use it morning and night and whenever I need it during the day. I have found it helpful when I get shooting pains in my eyes. I get no side affects. 

Medication for Anxiety: I was diagnosed with an anxiety disorder 2 years before getting sick, but Lupus heightened it. I take one 80mg of Propranolol a day. I do occasionally get side affects to this and it’s really weird. I get what I call “propranolol trips”. I vividly dream something is falling on me usually insects, it was once a chair though, I told you it’s weird. Then I jump out of bed half asleep to avoid the nonexistent object falling on me. I know someone else on the same medication who gets the same side affect. It’s totally trippy. It’s a good medication though, so I just go along with it. 

For pain I try to stick with paracetamol and ibuprofen but I do sometimes need codeine. If I need codeine I take 60mg of it, it’s an opiate so I guess you can imagine what the side affects of that is…usually drifting off to another planet and talking nonsense. I also use Deep Freeze spray, you can get it pretty much anywhere, it’s good for achy joints. It’s much better & cleaner than the gel form. 

I started taking 5000ug of Biotin for my hair because it began falling out. It works a charm it’s also helped with hair growth too. I also read that Omega 3 helps inflammation and with having Lupus I get a lot of that. I just started taking 3000mg of it, so I can’t really report any changes yet. If it starts to help I will write a post about it.

Thanks for taking the time to read! 

Daily life with Lupus. 

I have shared my diagnosis story. If you want to read it to understand this post more I’ll leave the link.

Lupus has been mentioned in the media recently with Selena Gomez revealing her diagnosis. You might have heard popular line on House MD “it’s never Lupus”, I’ve found people have usually heard of it but I’m often asked how it makes me feel. 

This post is entirely dedicated to covering exactly that, how it affects me daily. I can’t speak for all sufferers as it affects each individual differently but most sufferers will be able to sympathise.

My aim for my posts is to help people, hopefully this post will reach somebody out there who has someone in their life going through this sort of thing. I hope it helps you understand that person better. Also, I hope it gets out to someone who is sick and who is looking for people like themselves. 

Aches: I ache most days, from head to toe. It feels like I’ve ran a marathon or been dipped in concrete. My whole body feels heavy. There’s no explanation for me aching, I don’t do anything physical enough to cause them. I used to do a lot of running, and I never ached as much as I do now. It’s just something that unfortunately comes with the Lupus territory. 

Joint pain: I get pain generally in my knees, elbows, shoulders and fingers. They often feel like electric shocks or just a dull constant pain. The odd thing for me, is that one moment it will be in my knees and the next it’s moved to my elbows and so forth. 

Headaches: Everyday I have a headache. Somedays it’s minor and others it’s a migraine, but everyday I have one. Obviously the worst is a migraine, I get white flashes in my eyes and feel so nauseous. When I say minor, I mean a normal headache, it starts little and builds up then it’ll die down again. I have got used to having one everyday, they are annoying to me more than anything now. 

Itchy skin: This is extremely annoying. I don’t have dry skin, it’s just another Lupus thing. I itch the most on my legs and back. Sometimes I scratch that much I cause bleeding. The best thing I’ve used to settle it is the Liz Earle Nourishing Botanical Body Cream. 

Dry eyes and mouth: This isn’t actually a Lupus thing, this is Sjogrens Syndrome. These are the only symptoms of Sjorgens I get. The dry eyes feel like I have sand stuck in them, a bit like when you have Conjunctivitis. I use Carbomer eye gel to help with that, for the dry mouth I just drink a lot of water. 

Pain in my eyes: This could be Lupus, Sjogrens or both. It’s a sharp pain in my eyes. It’s probably another form of a headache, I don’t know. What I do know though, it’s irritating and very painful, like head in your hands kind of pain. Fortunately they don’t last for long, usually up to an hour or two but they can occur numerous times a day. 

Fatigue: When I say fatigue I don’t mean I’m sleepy and need a 30 minute nap. I mean, lifting my arm up is too much and sleeping for nearly 20 hours straight. It’s fatigue that stops your daily life. I’ve often been labelled lazy and boring, I’m not I just simply do not have the energy to do anything but lay down.

Insomnia: You’re probably thinking, but you just said you’re fatigued? Yes but now and then I suffer insomnia. Usually it’s pain waking me up or preventing sleep or I’m just restless. This then encourages extreme fatigue, it’s a circle I can’t escape from. 

Poor appetite: Either because I’m too tired and pained to make food or I just don’t want to eat. This is quite common with Lupus sufferers. I tend to graze on food rather than eat a meal. It’s rare I finish what is on a plate. I’m often asked by family and friends if I’ve eaten and sometimes I need prompting to eat. 

Mood: Lupus and my other illnesses affect my mood. Somedays I feel very low and somedays I’m quiet. I make a conscious effort to not be snappy or mean to people, I can imagine if I didn’t make that effort I could be quite unpleasant. It’s a mixture of pain, fatigue and being fed up that I’m sick everyday. Family and friends know that when I’m quiet I’m having a bad day – thankfully they don’t take it personally. 

Rashes: I mainly get a rash on my right cheek, this is when I know things are about to get very unpleasant for me. It goes dry and blisters. I get little rashes all over my body, I’m grateful these don’t go dry and blister. I also get what I call pin prick spots (Petechiae) usually on my hands and thighs but I have had them on my chest too. Here’s a picture of the rash before it blisters…

Hair loss: My hair started falling out, nothing major thankfully but I do have naturally thick hair. It spurred me on to take better care of my hair. I started taking Biotin daily and using coconut oil as a hair mask, now I don’t have as much hair loss. My hairdresser also said my hair is in beautiful condition!

Swelling joints: My joints sometimes swell, usually my ankles. Sometimes it’s when I’ve done more than I should or they just randomly swell. 

Brain fog: Yes, it’s a real thing. I can sometimes start a task, stop for a break and not complete it because I’ve forgot what I was doing or that I was even doing it. Somedays I have no concentration at all. I also forget a lot of things. Sometimes I have no sense of time, I was an hour and a half late to an engagement party last month.

Bruising: This is a symptom from taking Aspirin. I take Aspirin to lower my risk of a blood clot, but a slight knock will more than likely cause a bruise. I’ll include a picture…

The sun: I know what you’re thinking, the sun isn’t a symptom. The sun can bring out symptoms, headaches, rashes, aches and joint pain. It also makes me feel extremely light headed and on some occasions has made my vision blurred. If it’s a hot day and I have to go out in it I have to apply factor 50 sun cream. I try to avoid the outdoors on hot days though.

Cold hands and feet: This is Raynaud’s phenomenon. My hands and feet are never warm, they go purple when I’m outside or in a cold room. When I go somewhere warmer they turn red, sometimes swell and sting. This causes me to have some issues distinguishing what temperature water is, what is cold to you is usually warm to me. I’m known for having ‘cold’ baths rather than hot because I believe the water is hot. 

Costochondritis: Is inflammation of the cartilage that joins your ribs to your breast bone. This causes sharp chest pains and pain when breathing. 

The thing with these symptoms is they’re random. They just happens and they come on very quickly. One moment my knee could be fine and the next moment I could be reaching for my strong pain medication.

The most frustrating part of all the symptoms, minus the rash (which isn’t always there) is you can’t see them. People often think I’m lying that I’m sick or think I’m being dramatic. It’s like having the flu everyday of your life, imagine that, sounds horrible doesn’t it? 

My life is spent trying to work out what I can do, if I go out with a friend I have to take something off my to-do list because I can’t do a lot in a day. If I have a busy day, I need 3 days to recover. 

Thank you for taking the time to read this post, I hope it gives you a clearer idea of how life is with a chronic illness.