Lupus and being abroad: day 1 (17/6/17)

Hello from beautiful Turkey! The weather today has been glorious, reaching around 33°c. This is my first post on how I’m surviving in this heat, because as most of you know, Lupus and heat don’t tend to mix well. 

I arrived at my hotel at 4:30am, although it was 2am UK time…and I had 45 minutes sleep because I’m apparently an overgrown excitable child. The flight was, meh, it was okay. I don’t mind flying, in fact I love take off but that’s about it, after an hour I start to get sore and extremely uncomfortable. Mix that with screaming children and a screaming need for nicotine (I’m an ex-smoker and I’m probably too addicted to my e-cigarette) it’s just not a fun situation to be in. But, needs must if you want to end up in a beautiful place like this…

7am today. I watched the prettiest sunrise.

So, to deal with the intense heat? Water, and I mean, chug so much water down that you think you might explode. Surround yourself in water, get in that sea and pool…although I found the pool pretty cold so I preferred the sea. This hotel has two pools so I’m planning on seeing how the other is tomorrow. 

I also applied factor 50 suncream regularly, topped with a factor 30 facial sunscream and sun protective balm for my lips and nose…if you ever need suncream, come to me. 

I took painkillers often as well, however they haven’t stopped my headache which I think is a combination of fatigue, heat and generally just having a disease that gives the gift of headaches regularly. My left ankle started to seize up later this afternoon, mum thinks it could be a side affect of the glamorous flight stockings I had to wear. They are so tight and the tighest point is at the ankle. Since I also have Antiphospholipid Syndrome it’s crucial I wear them as flying is a big risk factor for me developing a DVT. 

Overall, I’m pretty happy with how I managed my first day. There was some points of the day I thought “this is too hot, if I don’t cool down asap, I think I’ll die on this lounger or just disintegrate into it”. I’m not naive and I expect some days to be tough in the heat, but I’ll carry on with what I’m doing because for the most part, it works. 

I don’t plan to update this blog everyday with how it’s going because I think it would eventually get tiresome for you to read. However, I am planning a to write more than just this and if a day doesn’t go quite how I like, I’ll let you all know. 

I have to get a shower now because my hair and body is full of salt, but I’ll leave you with some pictures of my day! 

Still alive…didn’t disintegrate into my lounger.

View from one of my many loungers today!
Another view…from another lounger!

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. 

A lesson in Lupus. 

This post is long but please read it, out of all my illnesses this is the one I want you to understand. I have tried to make it easy to follow and understand but Lupus isn’t simple and isn’t easy. I briefly explained what Lupus is/does in my diagnosis story but I have never gone into any depth. It sounds utterly horrible in black and white but that is exactly what it is, is any illness pleasant? I truly hope you get more understanding about Lupus from this post. 

I will start by telling you that there is 4 types of Lupus:

  • Systemic Lupus Erythematosus – also abbreviated as SLE, this is also what people refer to when they say “I have Lupus”. It is the most common form of Lupus.
  • Cutaneous Lupus Erythematosus – often referred to as discoid lupus. This form of Lupus is limited to the skin. 
  • Drug induced Lupus Erythematosus – this is caused by prescription drugs. The symptoms are similar to those of SLE however it’s rare any major organs will be affected. Symptoms tend to go away within 6 months of stopping the medication. 
  • Neonatal Lupus – (rare) and is not a true form of Lupus. Babies with this could be born with a rash, liver issues and low blood cell count. Symptoms usually disappear when the baby is 6 months old.

I suffer from Systemic Lupus Erythematosus so this post will be concentrating solely on that form. If you have ever researched this illness you might have noticed the term ‘wolf’ appear, this is because Lupus in Latin means Wolf. I have seen a lot of fellow sufferers refer to their Lupus as the ‘wolf’. You might have also heard the term ‘spoonie’ – which is a term I personally use. The term derived from the spoon theory written by Christine Miserandino, if you have the time it’s worth the read. Lupus is also referred to as the great imitator as it has similar symptoms to various other diseases – often causing a misdiagnosis or a prolonged diagnosis time. It can also in a sense ‘hide’ itself, meaning the patient can have a negative blood test but still have the disease. 

Lupus is a poorly understood auto immune disease and is incredibly complex. So don’t feel bad for not understanding it, I’m even a mind boggle to my GP and it took me a while to get my head around it. Your immune system is designed to keep you healthy, if your body has something foreign in it, the immune system sends out white blood cells to attack it. However, mine is confused and it’s sending white blood cells to attack the things I need. It essentially thinks my organs and healthy tissue are a foreign body and need to be destroyed. People often think my immune system is weak but it is actually stronger than a healthy individual, hence my lack of minor ailments such as colds and common infections. This is why I need medication to suppress my immune system. 

There are many symptoms of Lupus, the disease presents itself differently for each individual with the illness, it’s rare that two people would suffer identically. Here is a short list of symptoms, if I was to list them all, the list would be extremely long:

  • Facial & body rashes
  • Chronic Fatigue 
  • Joint pain/muscle pain/swelling
  • Mouth & nose ulcers
  • Miscarriages 
  • Depression & anxiety 
  • Difficulty with concentration/memory

You cannot catch Lupus. The cause is unknown, although experts say there is more than one factor. Genetics are one, my father and I both suffer from Lupus but his father was adopted as a baby so we are unaware if this disease runs on my Grandfathers biological side. The illness is now in our gene pool meaning my future children have a chance of developing the disease, the same goes for my older brother, he’s healthy but that’s not to say his future children won’t develop it. The next factors are environmental, however concrete evidence for environmental factors are limited. During the diagnosis process and the months that followed my diagnosis I had my own theory of where my Lupus came from. I had started a new job of full time 12 hour night shifts, I fully believe that by changing my routine so drastically and forcing my body and brain to function from 8pm-8am had caused my immune system to go haywire. Of course I also include the genetic factors in my theory. 

Patients with suspected Lupus will be referred to a Rheumatologist, however the diagnosis process can be long and stressful. I was extremely lucky to be diagnosed within 6 months from showing symptoms. So the specialist can arrive at a firm diagnosis they will expect at least 4 of a list of 11 internationally accepted symptoms to be present, including positive blood tests. Your family history will also be taken in account. There is no single blood test that can confirm Lupus which is why the patients symptoms are also taken into account. Here are the blood tests used to help confirm a diagnosis:

  • Anti-nuclear antibody test –  also abbreviated as ANA. Most people with Lupus have a positive ANA however this test can be positive in those without Lupus so this alone cannot diagnose. 
  • Anti-double-stranded DNA (anti-dsDNA) antibody test – a positive result means it’s highly likely the individual has Lupus as this test rarely shows positive in people who don’t have Lupus. The level usually increases when Lupus is active. 
  • Antiphospholipid antibody test – a positive blood test for these auto anti-bodies means the individual may be more at risk of miscarriages and blood clots. 

When I say I have an illness that could kill me, am I joking? No, I’m not joking. Lupus can kill, 20 years ago only 40% of Lupus patients were expected to live 3 years after a diagnosis. Luckily with medical advances patients with Lupus have the same life expectancy as a healthy individual, but that doesn’t mean something can’t go wrong. Complications can arise:

  • Kidneys – kidney issues are common in Lupus. Approximately 40% of Lupus patients will develop kidney problems. Kidney failure is a leading cause of death in Lupus patients. 
  • Heart – Lupus can cause inflammation of the heart. There is a risk of cardiovascular disease and heart attacks too. 
  • Lungs – Lupus can make you susceptible to pleurisy and pneumonia. 
  • Brain and central nervous system – if your brain is affected, Lupus can cause strokes, seizures, hallucinations and behavioural changes. 

Treatments for Lupus vary and you may find different people are prescribed different medications. This is because, like mentioned above Lupus is a very individual disease and affects people uniquely. Treatment plans aren’t a one size fits all – here is a list:

  • Anti-malarials – Hydroxychloroquine and Mepacrine are most commonly used in treating Lupus. I found anti-malarials helped keep my rashes down but not helpful enough for pain. 
  • Steroids – I speak to a lot of people online who are on steroids such as Prednisone. I have never used them but they have been proven to improve Lupus symptoms and in some cases are lifesaving. 
  • Immunosuppressants – the most common used medications in this category are Azathioprine, Methotrexate and Cyclophosphamide. Regular blood tests are required for these medications. I take Azathioprine, and I’ve found it particularly helpful with headaches. 

At present, there is no cure for Lupus and there is a lack of funding for research. Sufferers like myself, remain very hopeful that one day there will be one. 

    Before I go I want to talk about the wonderful charity, Lupus UK. They helped me a lot whilst I was going through my diagnosis. You often hear people saying they love a certain charity and that’s a feeling you get when you need a charity to become a voice for you or a loved one. Lupus UK provided me with accurate information that was straight forward to understand, booklets for my employer explaining the disease and general support. The charity was also kind enough to share this blog, which was more than appreciated. They also fund research into the causes and a cure. If you see fitting please donate to this charity or purchase something from their shop. I know myself, thousands of other sufferers and the charity itself would be grateful for any donation. Thank you xo 

    What is Raynaud’s Phenomenon?

    I want to start writing blog posts explaining what my secondary illnesses are. This task might take me a while to get through – because I want to ensure they are thorough and easy for you to understand. 

    Raynauds Phenomenon, or Raynauds Syndrome or simply just Raynauds. This is the illness that makes me cold, it’s the illness that has given me a love of blankets, fluffy socks and the ability to sniff out any nearby heat sources. Although it’s a running joke that I’m rarely seen without my beloved blanket it’s actually a serious condition and extremely unpleasant. 

    There is two types of Raynauds: primary (the most common) and secondary. Oddly enough in Raynauds, having the secondary form is the worse of the two. For me, Raynauds is secondary meaning it was caused by Lupus. Despite it being secondary and having 3 other secondary illnesses – Raynauds is right behind Lupus in the terms of torturing me. 

    I was diagnosed with Raynauds in November of 2015 however my mother believes this is a condition I’ve had since a child – of course it was much milder then as it is now. If I were to touch you, I’d make you jump out of your skin – I really am that cold to touch. 

    Raynauds Phenomenon is poor circulation to various parts of the body, most commonly the hands and feet. The symptoms are brought on by cold temperatures, although being outside will instantly trigger my Raynauds so will drinks with ice and walking down the chilled and frozen sections of a supermarket. Stress and anxiety are other known triggers of symptoms. 

    A Raynauds attack for me typically makes my hands and feet look like they belong to a corpse. It goes in 3 stages:

    • Red with pink spots
    • Purple
    • White fingers and toes 

    However, Raynauds doesn’t just affect my hands and feet, it can affect my whole body. For example, if I have a drink with ice I will shiver uncontrollably. This sort of ‘attack’ can also come from a slight breeze, simply from walking down a chilled/frozen section of a supermarket or from being outdoors for a prolonged period of time. It can last from 20 minutes to over an hour. Raynauds also affects my nose, yes you read that correctly, my nose gets very cold too! 

    The ‘warming up’ process is extremely painful and on some occasions has brought tears to my eyes. The only way I can think to describe the pain is: when you played out in the snow for hours as a child and then got straight into a hot bath. It is also mixed with pins and needles and my fingers slightly swell. I typically scrunch my hands into a ball because just moving my fingers during this process is complete hell. For my feet, I just sit down and don’t move until I can feel them again. It’s during this time my hands go a bright red, and I mean bright, it’s like someone opened the flood…or should I say blood gates and every blood cell I have is rushing to get to my hands and feet. 

    Raynauds affects many aspects of my life, I have two pairs on gloves in my handbag. On t-shirt weather for you, I will still be wearing my very much loved leather jacket and a bulky scarf. I struggle to distinguish water temperature, take batheing for example: I happily sit in luke warm water because to me it feels like a normal hot bath. Showers are the same, I turn the water to a low heat. If someone has filled the sink up for washing up I immediately add cold because the water just feels scolding to me. I sleep with 3 blankets and have a fleece bed sheet. 

    Raynauds is a common condition and affects 20% of the worldwide population. It is more common in women than men. Although complications are rare, they can happen. They are: 

    • Ulcers 
    • Scarring
    • Gangrene (tissue death)
    • Scleroderma (hardening of the skin)

    There is treatment for Raynauds, most of the time you can control it yourself by avoiding the things that trigger you and wrapping up warm. If you smoke, you are advised to stop as smoking can affect circulation – I didn’t find any change in my Raynauds from stopping smoking but I can guarantee if I carried on, it would have eventually progressed. If you are unable to control it yourself there is a medication called Nifedipine, which is a medication that encourages your blood vessels to widen. Although rare, surgery is sometimes needed if you don’t respond to treatment. The surgery is to repair or unblock blood vessels, this is to protect the certain body part affected becoming more damaged. 

    From the outside looking in

    What do you see? I know what you see, you see someone who works full time, probably goes to the gym after work and then goes socialising. 

    Appearances are decieving. That girl was medically resigned from her job, she doesn’t have a gym membership and she doesn’t socialise all that much. That girl has a disease that, to put it frank, can kill her if it wanted too. That girl has heard her mother say the words “it frightens me” because she doesn’t know if tomorrow, her daughters organs will shut down or if tomorrow she will race against time to get her to a hospital in time due to a blood clot or internal bleeding. 

    The point of this post is because some people don’t take it seriously because I look just like my peers. Have you ever been in a situation where you said “I feel so unwell” and a colleague/friend/family members replied “you’re fine” do you remember how annoyed you were? Because you feel so unwell but somebody just told you “you’re fine“? It’s annoying isn’t it. Imagine going through that every single day of your life, because well, you look just fine. 

    I have people close to me who think just that. They believe I should go out to work, do more and socialise more. And the truth is, I physically can’t do it. I just can’t. I wish I could, I wish I could step back in time for just a day to be the old me but I can’t. This new version of Emily looks just like the old one, people can’t wrap their head around that and that’s why they believe I should do all of the above. But, unfortunately she’s long gone and I highly doubt she will return. 

    Explaining how Lupus feels is extremely difficult, some days I can compare it to a sickness bug, but there’s days I can’t compare it to anything. I can describe some symptoms, for example, my head today feels like someone has repeatedly swung a pan around it. But, for the most part it’s too difficult to describe, it’s such a unique illness to each sufferer and affects everyone differently. The levels of pain are different, sometimes it’s dull, sharp, throbbing or a mixture and sometimes it’s an unexplainable pain that even I can’t detect what kind of pain it is – it just hurts. 

    Lupus opens you up to a new kind of loneliness. Although I have stated that my father and I share the same illnesses, we feel it differently. There is nobody around me who feels the exact same. I’m surrounded by ‘normal‘ people who say “they understand” and I appreciate the support but they don’t. I’m sorry if that sounds ungrateful and blunt, but that’s the truth. It’s like saying to an amputee “I understand”. 

    It does nothing but anger me when I see people judging me. You can’t judge someone based on appearances or how they act. Yes, you see me smile but you’re also seeing me smile through pain. Yes, you see me out of the house, but I can’t stay confined to the same four walls 24/7 and when you see me, I’m still in pain. You’re looking at my life from the outside, you don’t see me curled up crying because I don’t think I can take anymore. You don’t see the dark cloud that’s constantly above my head. Although I say “it’s okay, I’m okay” quite regularly, I’m not okay. I have fears, in fact I have regular fears that something terrible is going to happen to me. I hand on my heart firmly believe I won’t live to a grand old age…there has been nights that I have had such high anxiety over the pain I was feeling that I thought if I went to sleep I wouldn’t wake up so I stayed awake all night. 

    That’s the harsh reality of my disease, so please, do not judge me based on how I look or because I’ve had Lupus for nearly two years so I should be back to my normal self by now.

    “There’s nothing wrong with enjoying looking at the surface of the ocean itself, except that when you finally see what goes on underwater,you realize that you’ve been missing the whole point of the ocean. Staying on the surface all the time is like going to the circus and staring at the outside of the tent.” – Dave Barry.

    The month of March, 2017. 

    I haven’t done a diary entry in a while, mainly because I think they sound repetitive and I don’t want to bore anyone. However, the symptoms I experience are repetitive but I’ve had some ‘new symptoms. I decided to compile the whole month of March into one post to make it easier. 

    5th March: I fell down the stairs and from the bruise you’d think I’d fallen from the top to the bottom but I actually fell down the last 3 stairs. It bruised and lumped up pretty quickly, thanks to Aspirin. The bruise is nearly gone but you can still faintly see it, the lump is slightly still there too. 

    The bruise from falling down 3 stairs.
    6th March: I went to see Olly Murs in concert. It was my first concert since diagnosis. Ironically in April 2015, I went to his concert and that was two months before I started showing symptoms of Lupus. Anyway, back to the point, it was amazing but I definitely felt it. I took painkillers before the show started but towards the end I needed some more. My ankles swelled and I ached from head to toe, I was exhausted and I had joint pain in my elbows and knees. Luckily my best friend and I stayed in a hotel around the corner from the arena so we didn’t have to have a long journey home. 
    Olly Murs, 24HRS Tour. 6-3-17 @ Metro Radio Arena, Newcastle.
    7th March: The day after the concert I was aching, tired and generally sore but we knew he had another show that night so decided to head back to arena to try and meet him. Long story short, we saw him get out of his car but his manager didn’t allow him to come over. Once I was home, I’d hit a brick wall I was exhausted, aching, had joint pain, a headache…you name it, I had it. I spent the evening in a hot bath and relaxing in bed to recover from my busy two days. At least I now know how concerts affect my Lupus. 

    25th-26th March: I took my lovely Mum to York to celebrate Mother’s Day. We spent Saturday wondering around the city centre shopping. It was beautiful weather that didn’t affect me too much, when we first got into the centre I could feel a sun induced headache starting so I quickly took Paracetamol and Ibuprofen. By late afternoon/early evening, the sun started to go down and Raynauds kicked in, its weird how I spent the day walking around with no jacket and by early evening I had my leather jacket and gloves on. I was completely exhausted by the time we got back to the hotel so we stayed there for dinner. Once we were in our room, I put the TV on as I was getting ready for bed but it said Pirates of the Caribbean was on next…here’s the problem, I love Pirates of the Caribbean. Despite being tired, we watched it…we had too, its Jack Sparrow! I struggled to sleep that night as I had horrendous pain in my back and sides. It started so suddenly and came out of nowhere…like most symptoms of this illness. 

    On Sunday we went to the York Castle museum and wondered around the centre again. I had very sore feet and my ankles were slightly swollen. I was achy, had joint pain and was pretty much exhausted. Once home, I had a hot bath and fell asleep. It was such a lovely weekend, full of laughs and smiles so that makes all the pain worth it. 

    My lovely mum and I in York.

    A ‘new’ symptom I’ve been experiencing is a dull pain in my left leg, the dull pain is also accompanied by a dragging pain. It’s not constant and it isn’t excruciating but I’d rather it not be there. I’ve also had a cramp like pain on the right side of my neck and today it’s quite sore to the touch. 

    Something not new to me is dry eyes but this month my right eye had suddenly got a lot worse. My eyes usually feel like there’s sand stuck in them but this has felt more like a stone. My cornea was a lot redder than the left eye, so I thought maybe I had the start of Conjunctivitis but it wasn’t weeping – in fact it had no moisture at all, it was completely bone dry, so I knew it wasn’t that. My next thought was my Sjogrens Syndrome had got worse, but why is it only affecting one eye? My mum said I could of scratched it without noticing, which is probably correct as I do itch my eyes a lot with them being dry. It seems to have settled down now so I’m going with the scratch theory. 

    This month I’ve suffered a bout of insomnia, which in turn makes fatigue a lot worse. One night I didn’t fall asleep until 4am and even then it was broken sleep. I had to take sleeping tablets in the end.

    My blood tests for Azathioprine moved to 6 weekly, but I noticed that was wrong and they are meant to be 4 weekly. I spoke to my nurse and they have been rescheduled for every 4 weeks. 

    I’ve had my usual symptoms this month. I get some degree of joint pain everyday, usually in my elbows and knees, I’ve had fatigue (like always) and headaches. Today my joint pain is in my left elbow and I ache a lot. I can feel a headache coming on, so I’ll try and block that.

    I think that’s everything for the month, I feel like that was a lot to get through! 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. 

    Puppies and Lupus.

    Meet Fifi Beau! She’s a Chihuahua puppy, around 13 weeks old. My dad, brother and I all chipped in to get her for my mums birthday. She’s…yeah…yeah, she’s wonderful, a delightful little thing but she’s also a little hurricane who needs to be watched every minute of the day. 

    I’m the one who is with her most of the time whilst my family are all at work. I get up early, and this leads me to my first problem…my Lupus doesn’t like mornings, at all. It doesn’t let me function as a ‘normal’ person would first thing on morning. So there I am, up and having little Fifi jump all over me, scratching at me because she’s excited to see me. Here’s an idea of how I can’t function on a morning: my parents were talking to me this morning but can I remember anything they said to me? No, not a thing, I can’t recall what they were wearing, the colour of dads shirt or mums blouse. I can’t recall if they had told me that she’s eaten or used her puppy training pad in the time they’ve been awake. I can’t remember anything. In a way, it’s like being drunk and slowly I’ll “sober” up but fully wake up? Never. I can’t remember the last time I felt fully awake and energised. I’m constantly tired, and since looking after the little pupper, I’m feeling an overwhelming weight of fatigue and it’s honestly putting me in a foul mood. Fatigue is the symptom I struggle to deal with the most, nobody likes feeling exhausted. It’s like being stuck in a glass box, watching everyone go about their lives full of energy and you’re trying to find a way out but there’s no door. 

    My head, some days it feels like it’s swelling or my brain is being squeezed and others it feels like a heard of elephants are living in there. I always put my headaches down to what level of fatigue I’m feeling, I find the two coincide and since my fatigue is bad it only makes sense that the headaches would be too. 

    I ache, from head to toe. It’s like wading through water, I guess this comes from the constant bending down and picking her up to go on her training pad. As well as the aches, there’s joint pain in my knees, elbows, wrists and hands. I can’t take my strong painkillers because I’m worried that my body will just say “you know what, time to sleep” and I’ll be out for hours. They rarely send me to sleep but since I’m already so tired, I can guess they will. Sometimes, they take my mind somewhere else and I need to be ‘here’ so I can pay attention and give training. 

    All in all, Fifi Beau has sent me over the edge and into a flare. Do I regret getting her for my mum? Not at all, she wanted a female Chihuahua, but she was looking at getting one that was already trained, probably to avoid this situation. However, like we share our illnesses, dad and I are also very similar in personality and act on impulse rather than think things through. So who’s to really blame here? It kills me to admit it but, myself. But, I somehow still manage to get through the day with her…I’m not sure how, but I do. 

    Despite all that, she does give lovely cuddles, so that makes it all okay.