Items/things that make life with Chronic Illness easier.

When I was diagnosed, I had to learn not only about Lupus and it’s manifestations but also how to make myself as comfortable as possible. When I’m not comfortable, Lupus strikes back at me causing unwanted suffering. Sufferers get a lot of help and recommendations from each other, which is exactly why I’m doing this post, here are the staple items in my life that I cannot live without.

The Heat Pad: This was at the top of my 2017 Christmas list, I originally wanted it to alleviate my often severe Raynaud’s. However, it has been used more to help my Lupus aches and pains. Overtime, I have realised my pain responds well to heat. The pad itself is soft, almost a fleece material and it’s flexible, meaning it can be wrapped around the affected joints. It has 5 heat settings, I usually have it on the highest setting (5). The pad is on a timer and after 3 hours, it will turn to standby mode and it’s also machine washable, which is great when your puppy decides it’s a great place to pee (evil eyes at Fifi). In recent months, I’ve had a lot of back pain which varies in severity, the heat pad has proved most helpful for this. I have of course used it for Raynaud’s, I place it on my feet when I can no longer feel them and I place my hands on it when they become too cold. It’s used daily and I highly recommend one if your pain responds to heat…or to just feel super cosy!

Hot Hands: Like stated above, my Raynaud’s can be severe, especially in my hands. If I go out without gloves, I almost instantly start to lose the feeling in my fingers. It causes great pain and distress, causing me to find any excuse to stay indoors for much of the winter months. I was going to a Christmas market, something I was excited but nervous for due to Raynaud’s, I found the Hot Hands online and decided to try them. Once you take them out of the packaging, the air starts to activate them, and the results were life changing. I was out in minus temperatures for a few hours, holding cold cans of Coke and with barley any Raynaud’s symptoms in my hands. Although the packaging states they stay hot for 10 hours, I’ve found they can last up to 14. I urge any Raynaud sufferer to at least try them, I couldn’t live without them and now I can leave my house knowing my hands will be warm and comfortable.

Heat Holder Gloves: I spotted these gloves on a cold snowy day whilst shopping. The thickness and 2.3 tog level pulled me in and I ended up buying them. Like the Hot Hands, they have been nothing short of a miracle. They feel like duvets for your hands, they are unbelievably soft and warm due to the fuzz in them and the tog level. I double them with the Hot Hands. I highly recommend for those who have Raynauds and to those who feel the cold.

Tiger balm: Think Deep Heat but stronger. There’s two versions, white and red, I use red which is the stronger of the two. I put it on my elbows, wrists, knees and ankles. I find it most helpful for throbbing pains, it definitely dulls it down. It works even better when doubled with the heat pad. I have tried Deep Heat and even freeze gel/sprays but none of those products come close to Tiger Balm. The only downside is it can stain light coloured clothing. But, I’d rather have stained clothes than sore radiating pain through my joints.

Memory Foam Pillow: It might sound odd, a pillow helping me. But, my memory foam pillow serves as a place to rest my joints when they’re sore and swollen, especially my elbows and ankles. I’ve found usual pillows flatten when I prop my feet upon it but the memory foam stays firmly in place.

Central Heating: A cold house will encourage my Raynaud’s to rear it’s ugly head and the cold air will cause my joints to seize and become painful. I have found 23.5 to be the perfect temperature, it constantly stays at this temperature and very rarely gets lower.

Making sure my medication is organised is a must for me. I also need to be able to keep track of what pills are running out and what isn’t, so I can put the correct medication through on my prescription.

The Bag: Once upon a time, it was used to hold make up and hair products for on the go. Now, it holds painkillers such as paracetamol and ibuprofen. I keep prescription pain meds such as Codeine and Tramadol in there too. It also houses eye drops in case I need them on the go. I keep it in my handbag but also carry it around the house. Most people have seen me with ‘the bag’…I’m the best person to come to if you have a headache!

The Note System: I either keep notes on my phone or in a note pad. I jot down appointments or meds that need re-stocking. Due to brain fog, I can’t rely on myself to magically remember, especially dates and times.

The Trolley: I found this trolley on Amazon and for a great price. I use the two top drawers to store my meds (although I’m really pushing the 2 drawer thing, I think I actually need 3-4). The first drawer is used to store my meds that haven’t been sorted into my monthly medication box, such as my Hydroxy, Azathioprine and meds to stabilise my other conditions. The second drawer is used to store painkillers, mostly prescription pain meds, but there is also back up Ibuprofen and Paracetamol. I like how the trolley is a subtle way to store medication, most people would look at it and think beauty products are stored within it, not medication.

Monthly Pill Organiser: This was another great Amazon find at a cheap price. I’ve used weekly pill organisers in the past, but I felt like I was constantly refilling it. It’s so much easier to have a monthly one, it takes around an hour to fill. I could never go back to a weekly organiser after having this.

Since being diagnosed with Lupus, I’ve had numerous skin issues. But, with a lot of trial and error I’ve found the perfect products to somewhat settle these issues.

Body Butters: I suffer with itchy skin, it feels like millions of insects crawling under my skin. In the past, I have scratched my skin until it bled. I have tried creams from the doctors but they either came with unpleasant side affects or had no affect. I started using body butters which oddly helped the most. I love The Body Shop body butters, my favourite being Almond Milk and Honey. I have to moisturise at least once a day to make the itching bearable or none existent.

Liz Earle: For some unbeknown reason, when I commenced my treatment for Lupus, I developed horrendous acne. I had tried everything I could within a decent price range but nothing helped and my skin was getting worse. I bit the bullet and bought Liz Earle. It definitely works and the price of the products reflects the quality. Due to how sore and broken out my skin was, my GP decided I should start antibiotics. I can balance my skin with the two, I still break out but my face remains somewhat clear and pain free.

Having a Chronic Illness can be isolating and lonely. I’m a person who enjoys their own company but being alone for most of the week can take it’s toll. When my family leaves for work, I can become anxious because I’m alone and overthinking. I have numerous things to occupy me, so I can get through the week without feeling too lonely. Here are few examples:

Netflix: I despise daytime television, I find it brain numbing so I sometimes flick to Netflix. I absolutely love documentaries and will sit through pretty much any (unless it’s the animal documentaries that show animals chasing and eating each other). But, it’s no secret that my favourite things to watch is true crime and anything medical.

Reading: Sometimes I like to read, if my brain fog and concentration allows. My mother has recently got me into thriller books. You can pass hours if you’re engrossed in a book.

Dogs: When I first got poorly, all I had was my little Theo. And because it was just me and him, we formed a unique bond. He wouldn’t leave my side and has licked the tears off my cheeks numerous times. Since then, we have added 2 more dogs. Just hearing them around the house keeps me settled. Animals are a great therapy and without having them around, I think my mental health would have declined.

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Rheumatology appointment – 15/3/2018: a new medication.

I’m sure my appointments come around quicker each time. The time between my last appointment and this one was 4 months. This appointment was mostly centred around Antiphospholipid Syndrome.

As usual, the appointment started with the nurse for the usual checks. My weight and blood pressure were fine, but my urine is showing a possible infection. I’m unsure if I still have protein lurking in it, the nurse was concentrating on the possible infection.

As stated above, this appointment was mostly about Antiphospholipid Syndrome, I’ve never had an appointment that was nearly dedicated to this illness, people assume (and I did for a while) that all my symptoms are down to Lupus. In all honesty, this was an odd appointment to me, I was barley asked any questions. He asked how I felt since the upped dose of Azathioprine and when I replied “honestly…I feel no different”. And, that’s when the appointment changed direction to Antiphospholipid.

It isn’t new knowledge to me that my consultant wants me to take warfarin or something very similar to control my APS. For over a year, he’s believed my headaches are tiny blood clots on my brain that fizzle out on their own. For some reason, I have a great fear of Warfarin, the thought of taking it petrifies me. Which has resulted in a firm head shake at my consultant numerous times, essentially, I have denied treatment.

However, at this appointment, we found a middle ground. A medication called Apixaban, which has replaced my dose of Aspirin. Apixaban is an anticoagulant, which means it will greatly reduce my risk of DVTs and PEs. I take two 2.5mg tablets a day, one in the morning and one at night. My consultant believes the symptoms that aren’t being relieved by my Lupus meds, aren’t Lupus symptoms at all, but symptoms of APS. We’re hoping Apixaban will help relieve headaches and some degree of the fatigue. I have been given a months supply to see how I cope on it. The meds come with an alert card that needs to be kept on me at all times.

Another point of discussion was the back pain I’ve had for the last few months, it differs in severity. I also mentioned that I can do my first wee of the day at around 4pm. He said the urine sample I provided will be sent to the labs for further testing. He also wanted to check my full blood count, the last couple of times my blood count has been slightly low. If it continues declining, my dose of Azathioprine will be reduced back to 100mg. He will write to me with the results of both, but the nurse recommended I ring my GP to check if I need antibiotics, which she said I most likely will.

He scheduled us to meet again in 3 months time.

Rheumatology Appointment – 30th November, 2017: Changes I wasn’t expecting.

I had a funny feeling that something was going to change or happen at this appointment, I’m not sure why, but the last time I had this feeling, my whole treatment plan changed. It could just be that I’m a superstitious person, but so far that feeling hasn’t let me down. Although the change is only minor, it was enough to irk me.

If I’m honest, I was already in an irritated mood, it was snowing with bitter winds. Which, I admit, sounds like a stupid reason to be annoyed but when Raynaud’s sets in and you can’t feel your own limbs, you get irritated. I think I made it worse for myself by imagining the things I’d rather be doing than trekking to the hospital in snow and winds.

There’s something about the waiting room which depresses me, either because it’s a room I’ll spend so much of my time in or because it’s a hospital waiting room – probably both. I sat and read a mind numbing celebrity gossip magazine until I was called by the nurse for the routine checks of blood pressure, weight and urine.

I was expecting all 3 to come back clear as they usually do, which my weight and blood pressure did but for the first time my urine did not. It showed positive for protein, something usually not to worry about but I have researched mostly everything you can about Lupus and I know that protein in urine can be an indication of kidney involvement. I asked if that was anything to worry about and the nurse told me that people can naturally have protein in their urine and there’s usually nothing to worry about. She wrote my details on the bottle, I assume the sample went to the labs for further testing.

I struggle immensely with figuring out what is significant enough to tell my consultant, there was 6 months in between appointments this time and I think it’s too long. I decided that the most significant issues were the two bad flares I’ve had since my last visit.

I started with the flare that was caused by a viral infection, the flare that resulted in a visit to an out of hours doctor. I mentioned that the doctor I saw had said I needed steroids to get the flare under control but I could only get them prescribed from my consultant. I wasn’t surprised to see my consultant look a little puzzled by that. He confirmed my suspicions that, if I need steroids, my GP can prescribe them.

I proceeded to tell him about the flare that was so prolonged that I thought it would never end, the flare caused by insomnia. I explained that I slept for 10 hours in a week. I told him my joints were painful and swollen, that I had headaches and pretty much any other symptom you can think of, he said no sleep for that length of time will do that to me. I have spoken to him about poor sleep in the past which he confirmed is all part of Lupus.

The appointment moved onto the usual questions, are you still having regular headaches? “Yes”. Are you still having joint pain and aches? “Yes”. Have you been getting rashes? “No”. Slight lie, I have but they don’t stay long and ironically after the appointment, I had two – both on my face.

One of the hardest things for me to overcome and it’s something that I’m still trying to overcome, is that I’m not a pain in the bum to doctors, family and friends. Which means, admitting that you don’t think your current treatment plan or dose is working as best as it should. Which brings me to the part of the appointment I wasn’t expecting…

Are you having more good days? “No”. Are they mostly bad days? A thought flickering through my head to be honest with the doctor trying his best to help, “yes”. There was a slight pause in the conversation and then he told me he would like to increase my dose of Azathioprine. He asked me if we should increase it to 125mg or 150mg. It’s was like he was asking if I wanted the small bag of sweets or the large bag. I was more in shock because in the past I was told the dose would more than likely never go above 100mg, and if it were to be raised, doctors would need to be cautious due to low TPMT test results. I shrugged and said “I’ll leave that decision to you”.

He raised the dose to 150mg and lowered my appointments to 4 monthly. He handed me a prescription, a blood test form and a form to hand to reception. As I was leaving he said the sentence that irked me “your blood tests are now fortnightly”. It had taken over a year to just get to the 3 month mark for blood tests and now I’m back to fortnightly. I know nobody is to blame, but it’s annoying.

I went to the hospital pharmacy and then on a hunt for the biggest bag of Maltesers I could find…I found a bag and I also found Toblerone and I’m yet to find a regret.

No sleep for a week…

I think it’s still a crazy concept to some people that someone with crippling fatigue does struggle (all to often, might I add) with insomnia. Sleep issues are a running issue with Lupus sufferers, we either sleep incomprehensible hours or not at all. Last week, I was on the not at all scale – I have never experienced insomnia that bad before. Insomnia is highly irritating for anyone but, for someone with a chronic illness and chronic fatigue, insomnia doesn’t half do some damage.

There’s no psychological issue for my insomnia; I’m not stressed, upset or overthinking. Sometimes, there is a physical reason and that of course is pain. Insomnia by pain is something I can usually help – strong pain killers will usually numb the pain enough to be able to sleep. Other times, I just cannot sleep which is how last week started out but towards the end of the week, it was a combination of both pain and just not being able to fall asleep.

It takes just one night of inadequate or no sleep to cause me to flare. My joints became painful and by the weekend, I was walking around on a swollen knee and applying Tiger Balm on my joints so now I have stained PJs and owe my dad some Tiger Balm. I had exhaustion induced headaches, my whole body ached like I’d just ran the London Marathon, my appetite vanished into thin air and was replaced by nausea. My usually chilled out personality was replaced by a short tempered monster, which I think is fairly acceptable given the circumstances around it. By Friday my rule of ‘don’t cry over Lupus or what it does or causes’ went out the window – I sat and cried for sleep from Friday to Sunday. I probably looked like a crazy woman curled in a ball on the sofa at 4am crying and saying “please just let me sleep” to the air.

I tried everything; reading, warm drinks, not looking at my phone or the time, counting sheep, counting back from 100, cleaning (which was ended quickly by feeling like I was going to faint), over the counter sleeping tablets (usually effective on me), I tried codeine and tramadol and for a second of desperation I even thought of mixing the two opiates to knock myself out (I didn’t try this in the end in case I actually went into an eternal sleep). Towards the end of the week and this isn’t a joke, but I was debating asking my brother to just punch me so hard it knocks me out. I even found myself saying “it’s a good job they took the bridges down because I would of jumped off the f*cker by now” and that’s what pure sleep deprivation does to you.

By some miracle, I lasted a week…7 whole bloody days…that’s 168 hours on no more than 10 hours sleep. I spent most nights looking at the living room wall, tracing the pattern with my stinging eyes, wishing my dog was downstairs to cuddle, watching the seconds tick by, crying and cursing myself in anger. 3am on Sunday, well the small hours of Monday, I decided I couldn’t take anymore and was going to see the doctor. In a mad rush, I was looking for money because I had none on me for bus fare and ironing clothes, I’m still surprised I didn’t run the iron over my fingers in my exhausted state. Once the receptionists opened the doors and everyone was clambering in to get on the doctors list first (it’s a walk in system) a very kind lady stopped and looked at me, probably taking pity that I genuinely looked beyond exhausted and pointed at the door and said “you go first”, so thanks to her, I was lucky to be 3rd on the list.

“How can I help you?” he asked me and all I could say was “I haven’t slept for a week” he was probably looking at me thinking ‘no shit’. I explained how it was making me flare badly and told him “I think I’m losing my mind over it”. He gave me sleep exercises for the future and prescribed me Zopiclone and he said he can guarantee tonight I’d sleep soundly. As I was gathering my things and saying thank you he showed me a lovely little injection, so I was also stabbed with this years flu jab as well…two birds with one stone and all that.

He was right, I did sleep solidly. I took the tablet and before I knew it, I was waking up this morning. I didn’t even use the pillows and the duvet was only on my legs but yet, it was the best night sleep I’ve ever had. The flare is on-going but it has got a little bit better with sleeping last night, it will take me a good few days to recover from it. The Zopiclone left me quite tired today, especially this morning but I expected that because I used to administer it at work and the patients would sleep on and off during the day that followed the pill being taken. I didn’t mind though, it was an excuse to get more sleep.

I never want to experience insomnia that bad again, and the next person that tells me their suffering badly with insomnia will get the biggest sympathetic hug from me. Sleep is not for the weak, it is a wonderful thing that I love and missed so much. Zopiclone, you bloody beauty, thank you for knocking me out so my brother didn’t have too.

Dear Lupus,

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

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

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

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

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

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

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

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

Regretfully,

Emily Holling.

The Daith piercing: does it work or not?

I’ve been debating getting this piercing for a while. I’d think “yes, I’ll get it” and then I’d think “there’s no way a piercing could help headaches/migraines”. It does sound odd, a piercing alleviating headaches and migraines, but apparently it’s a pressure point, so it’s almost like having permanent acupuncture in your ear. During my research for it, I have found people claiming it has also alleviated their anxiety.

I’ve never been the kind of person who would wait for a piercing or spend time researching them. Through my later teenage years, when parental consent was no longer an issue, getting a new piercing for me was just a ‘fun’ thing to do. I don’t know how getting a needle through part of your body is classed as fun, but it was. I have gone through many, my nose was pierced around 6-7 times, I’ve had my tragus and cartilage pierced, my belly button and tongue. The only ones that are still remain pierced are my belly, tragus and tongue.

So why am I now holding out? Is it because my phase of spur of the moment piercings is finally over? Or is it because I’m genuinely skeptical that this will work? It’s probably a bit of both. It’s also not a piercing I’d say is ‘pretty’, if I wasn’t sick and didn’t have daily headaches I wouldn’t be contemplating it. It’s a piercing to me, that looks randomly placed – as if the wrong part of the ear was pierced.

I have asked fellow Lupus sufferers if they have tried it out, some saying it’s the best thing they’ve done and others saying it was a waste of time. I guess, its falls on the individual in regards to it working or not. I suffer from headaches nearly everyday, whether it be a normal headache, a pressure headache or a migraine. So, for my own curiosity I have decided to get it pierced.

I plan to get it pierced at some point next week and I will be writing a series of post regarding the effectiveness of the piercing.

(Also, please keep me in your thoughts because I have a feeling it’s going to hurt like a bitch).

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.

Misconceptions about Lupus.

Lupus is a poorly understood illness and when you're on the poorly understood territory, a few misconceptions happen. This is because the people who know about it are a minority compared to those who don't. The main point about this blog is to not only share my journey with Lupus but to also educate people about the illness. I have decided it's time to write a post about these ridiculous misconceptions, so here are 10 cleared!

1. You will NOT catch it.
It's not the common cold. It's impossible to catch it. Lupus is not a special strain of invincible bacteria, it's a majorly confused immune system. So next time you're in the company of a Lupus sufferer, shake their hand, or give them a friendly hug and maybe even share food. I can guarantee you'll leave as healthy as you came.

2. Lupus is NOT cancer.
I can see why people believe this one as chemotherapy is sometimes used to treat Lupus. But, you'll be glad to know, it's definitely not cancer.

3. Only women can get Lupus.
It is more common in women so maybe this is where the confusion has stemmed from but men can also suffer from Lupus.

4. Women with Lupus can't have children.
Although we will be classed as a high risk pregnancy and have an increased risk of miscarriage, women with Lupus can indeed carry to full term and have a healthy baby.

5. Lupus is easily diagnosed.
It's not a case of visiting your doctor and walking out an hour later with the diagnosis. There isn't a singular test to confirm Lupus so testing can go on for months to years with countless blood tests, questioning and physical examinations. It isn't a diagnosis given out easily and it's an extremely exhausting process to have to go through.

6. It's not real.
How could an imagery illness have the power to do so much damage? Everything we feel is real, Lupus is 100% real. Ask the scientists who research it.

7. We will get better.
There is research going on but there's very little funding for Lupus research so unless the scientists have a eureka moment, we will remain incurable.

8. Lupus is uncommon.
The NHS website even states this. Although most of the people you know are probably healthy, Lupus is not as uncommon as you'd think. Don't get me wrong, it's not the most common illness to have but in my opinion it's not as uncommon as they make out.

9. Lupus is deadly.
20 years ago only 40% of Lupus patients were expected to live more than 3 years following a diagnosis. Although we can still experience complications, we now have a normal life expectancy.

10. We brought Lupus on ourselves.
False. Although many believe Lupus is brought on by certain lifestyle choices, this is not true. We haven't brought it on ourselves. If this was the case, don't you think there would be more people with it and better funded research?

I think I can speak on behalf of most Lupus sufferers that if you ever want to know anything, just ask us. We'd rather you get the correct information and who better to ask than someone who lives with the illness?