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 3. (20/6/17-21/6/17)

I spent yesterday at my favourite beach, it wasn’t until we left the beach that we noticed the temperature was 37. It was bearable due to the sea breeze, in all honesty I was shocked to find that was the temperature. I spent some time in sea, which definitely helps symptoms. I also had a little nap on the lounger…I just can’t help it. It’s so easy to fall asleep on them, especially with chronic fatigue. It was a long day, we were out of the hotel grounds for 13 hours but remarkably I was OK. It wasn’t until I’d showered and got ready for bed that I started feeling the exhaustion and pains. I slept fairly well, mainly because the air con was off all night. Aircon plays with my Raynauds, I think it’s because it’s a high level of cold air constantly flowing out. But, I did keep waking up at random times – I have horrible sleep issues at home too so this is nothing out of the ordinary. 

I woke up today with a sore back, I’m not entirely sure what I’ve done. I haven’t done all that much to provoke it. I think it’s just a Lupus thing. It’s not a sharp pain, it’s more off a dull ache. I notice it more when I start walking around or change positions. I’m taking paracetamol and ibuprofen regularly, which you’d think would help my headache but it’s not letting up. It feels like someone has punched me in the back of the head. It started last night as we were walking back from the beach. 

It’s hot here today and there’s barley any breeze and when there is, it’s almost a warm breeze. I tried sitting in the sun but it provoked unwanted symptoms; headache worsening, itchy skin, dizziness and increasing my fatigue. So, I opted for the shade with a book today. It’s a feeling I struggle to describe, it almost feels like I’m not there because the heat zaps everything out of me. I couldn’t check the weather on my phone because I didn’t have wifi on the beach but, I’d say it was easily in the 40s. I fell asleep (again) on the lounger, it’s no surprise, I’ve done it everyday since being here. The sun and heat makes it a lot harder to fight the fatigue and I seem to just fall asleep at the flick of a switch, falling asleep to the sound of waves is utterly wonderful though. I was brought around a bit by a sugary cup of tea…could that sound anymore British?! 

Not everyday will be fine because it seems Lupus’ greatest enemy is the sun. It’s like it doesn’t want you to have the enjoyment that comes with it, sitting in the sun should be one of the easiest things to do but Lupus makes it extremely difficult.

This holiday is a test to see how I cope as it’s my first since diagnosis and with being medicated. I definitely think Hydroxy is keeping pesky rashes away, that’s the only thing I’ve found with Hydroxy, it’s good for keeping my rashes down. I guess having these bad symptoms surrounded by the sea and the beautiful mountains of Turkey is better than having symptoms at home confined to the same 4 walls all day. 

I tried to add pictures to this post but the wifi isn’t strong enough to upload. I’ll try again in my next post. As always, thank you for reading. 


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! 

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 

    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.