Welcome! 😍 I’m a 28 year old mother of one who’s been living in Australia for the last 6 years but recently moved back to the UK, just sharing some honest snippets of my life with my husband Jack and our crazy 2 year old daughter Olivia. After I was diagnosed with SLE and DLE (Lupus) in February 2016, I wanted somewhere to share my journey, my daily battle with the disease and a place I can raise awareness and hopefully get in touch with other sufferers 💜
I’ve not blogged in a while, life has been hectic what with planning our move back to Australia in 2 weeks! I’ve been busy cramming in family times and also deciding on what shoes to take and which ones to leave behind… waaaa I love a shoe 🙈 I’ve been doing well and feel so much better but the dreaded fatigue will not piss off! And some days it kicks my ass more then others. It makes you feel like the laziest person in the world.
I still find it easier to just say I feel “fine” or “ok” when someone asks me how I am. Saying “I’m tired” isn’t even worth it, tired isn’t even the word! And people will probably get bored every time I say I’m tired! I still find it hard to explain quite how crap I feel some days… especially when I look so well. I don’t want to come across as a moany old goat or worry anyone really.
I was on instagram and looking through a girls page who has Lupus… she was sharing something wth her followers and I saw one comment – the one negative comment, why does there always have to be that one troll?! The comment said “Oh look another person with a chronic illness sharing their sob story all over social media for some sympathy”. And I just thought WOW. If only you knew you ugly little troll. Firstly no one shares their stories for sympathy, absolutely not! It’s to raise awareness… do you think we enjoy waking up feeling like we’ve been hit by a truck? Do we enjoy having 12 hours of sleep and still feeling like we’ve had 10 minutes? Do we enjoy being so exhausted yet laying wide awake until 3am some nights? Do we enjoy having ulcers in our mouths and ears 24/7? Do we enjoy having excruciating body pain and arthritis so bad that some days we feel like we need a wheelchair? Do we enjoy slight sun exposure causing painful open sores and rashes? Do we enjoy gobbling 20+ tablets a day, taking medication we need to keep us in a stable position that will probably cause us more damage further down the line? Do we enjoy it when our hair falls out in clumps? Do we enjoy living a life knowing that our kidneys could fail tomorrow and none of our organs are safe? NO pal, no we don’t!! But what we do enjoy is sharing our stories with others in the same situation, we enjoy speaking out and helping others, we enjoy taking advice from others and not feeling so alone with these bullshit illnesses. So mr troll I think it’s time you got back under your bridge. Because believe me, you wouldn’t wish chronic illness on anybody!
I am both physically and mentally exhausted. I could have quite happily (well not happily) have stayed in bed all day yesterday. My body feels like a dead weight, it’s even uncomfortable to lay down. But unfortunately like many others I can’t do that. I’m a mum to a 3 year old crazy kid, I have to get up and tend to her needs, I have to get up and make her breakfast, care for her and just do all the things a parent does. I have to tell her ‘no we can’t go to the park today as mummy isn’t feeling too well’ which she replies “ok, we go tomorrow then” I have to ask her to not keep leaning on me because it hurts, not to jump on the bed where I’m lying because it also hurts. I have to ask her to get things for me. To help me out. Thankfully these days are few and far between but they make you feel like a proper shitty parent! Sticking your child in front of the TV because you just have zero energy. The thought of going into the kitchen and making her lunch actually kills me, I feel lazy AF!! But that simply takes everything out of me!
These days knock the life out of you when you are so used to being out and about every day, doing things your average 28 year old would be doing. It’s a little reminder that the disease is and will always be there, even though some days it keeps its ugly head well hidden away.
But although some days I’m feeling like a big fat failing parent, I look across at my happy child who’s still in her PJs at midday and I see the way she looks at me. And whether we are playing at the park or having a day indoors on the sofa, I am her hero. So to all of you out there who are suffering and struggling day in day out with chronic illness, whatever it may be. You are all superstars, troopers and heroes. No matter what you may think ❤️
I’ve not blogged in a few weeks. Life has been so hectic, I’ve not even been able to think! I feel like if you scribbled over and over on a sheet of paper- that’s my brain 😂
We had Olivia’s birthday. I can’t believe our baby is three!! I don’t know where those 3 years went, but we are so proud of her. The way she gets on with life and doesn’t let anything phase her and with the sassiness that multiplies daily! Seriously the things she comes out with everyday has us in tears! Sometimes we joke that she’s not a real person, she’s a robot or an alien who has been sent to us to outsmart us, to make us laugh until we pee and to just make our lives so much more fun! Plus push our limits 😂😂 anyway she a great day bless her and keeps telling us “I had the best birthday ever” next stop Peppa Pig World!
So as a lot of you would have seen yesterday Selena Gomez shared with her 127 million Instagram followers that she has been laying low as she has been recovering from a kidney transplant due to her Lupus Nephritus. What a brave girl she is and the biggest inspiration, not only undergoing this huge procedure but also knowing how the other symptoms make you feel, she always looks so beautiful and has a smile on her face, looking at her you wouldn’t even know the struggles she must deal with daily. As you know many of us look well on the outside. And her amazing friend for donating her kidney to her, what an absolute babe. I woke up to a message from my friend Becky, it just said “I would give you a kidney if you needed it” and that is just a reminder of how lucky I am with the people I have in my life, my supportive, understanding friends and family ❤️
So I just wanted to thank Selena for sharing this and for the awareness it is going to raise. It is genuinely appreciated, as I’m sure it is by many other Lupus sufferers. Yesterday afternoon in the U.K. alone, Lupus had been googled 10,000 times which is incredible. It actually made me emotional, I had a huge smile on my face. I was talking to my friend Becka – who always has Lupus, about it and we were literally buzzing! Haha! The more people that know about this illness and many other chronic illnesses the better.
This morning on BBC one news there was a story about Lupus as well, I hope it continues to get shared and hopefully sufferers can get quicker diagnosis as well. First symptom to diagnosis is usually 7 years in the U.K. Which is absolutely mad. I do believe I’ve had it a lot longer as like I’ve mentioned in previous blogs I was always quite run down as a child, I had tonsillitis monthly and they finally removed them when I was 16. My joints have always ached, I’ve always had a headache and mouth ulcers. But I never thought anything of it, why would I? It’s how I’ve always felt so why would I question it? It was my normal. Maybe I’ve had SLE for years but it was only when I got Discoid Lupus and the rash appeared that I got my diagnosis.
I am doing so well at the moment. After so many gruelling heart breaking months of hospital admissions, rash so bad that it caused infections throughout my entire body, so sensitive to UV that I couldn’t really go out, hair loss, brain fog, depression, mouth ulcers which felt like my mouth had been burnt and was red raw, arthritis and fatigue so bad that some days I couldn’t even lift my head from the pillow, blood tests every two weeks and 6 weekly appointments in London and enough medication to open up my own pharmacy, I am NOW in a stable condition and I do feel well, I feel like the old me (still bloody shattered and with 80 year old joints, but that’s ok) I can go out daily and enjoy life with my family and friends.
Selenas post was a reminder to me also that anything can happen with this disease. I may be well now and my organs are thankfully ok. But this could all change. I’ll continue with my positive attitude, my smile on my face and my love for life – sounds so cheesy I know 😂 but I really do take every day as it comes.
So last week was a bit of a quiet one. I had so much going on in my head, imagine a toddler scribbling all over a piece of paper (or walls if it’s my toddler we’re talking about) and it’s messy. Really messy. That’s what I can imagine the inside of my head looking like. My mind has about 1000 tabs open and on top of that I was super emotional and crying a lot and just not wanting to speak in general. And then after the emotional days I’m then angry. Actual aggy maggie. Oh the joys of being female. Thank goodness I’m only an emotional crazy mentalist once a month 😱 I can’t stand feeling like that it sucks the life out of you!
Moving on… So as well as seeing my specialist at the Lupus clinic I’m also still seeing my Rheumy at my local hospital. I enjoy seeing them both (I know I’m a two timer, such a hussy!) for different reasons. My local guy goes through my progression. He shows me the charts, graphs, levels etc. Which is great for me as I have much more of an understanding of things when I’m shown them rather then just being spoke at, I forget things very easily when I’ve been told them so to see things in front of me and having them explained that way is much better. He showed me my Lupus inflammation markers which last year were right at the top of the graph. The highest possible point, sky high as I was flared up to the eyeballs, you can see where it slightly dips when I was on a higher dose of steroids and then straight back up once weaned a bit, with monthly tests up until now monitoring the illness I can see they are right at the bottom and have been a straight line behaving themselves staying down there for the last 9 months. Seeing it there in black and white is the best feeling. My liver and kidney function are also fine, which is music to my ears. The specialists beam too, they are genuinely happy for me.
Looking back at how I felt last year, mentally and physically and how I looked, London Lupus specialist said I was the worst case of discoid he’d ever seen, yay lucky me. I have come on in leaps and bounds and I really hope this continues 🤞🏻thanks to two wonderful specialists and although I hate to say it the medication! I’ve gone from seeing the specialist ever 2 months to now just 2 yearly appointments as well as bloods every 8 weeks now instead of 2 weeks.
Yes I still have the occasional wobble, the why me, the what ifs. But it is me, as well as many others and it’s not going anywhere so that’s that, I have to deal with it. But it’s safe to say I’m definitely living an 80% Normal life now.
I do still suffer with the fatigue, but I’ve spoken to a few people who said fatigue was their main symptom in the beginning and well I’m still pretty new to the Lupus game, as it’s been 18 months since diagnosis and they have said it does get better. The joint pain is there as well as the ulcers and headaches but these things are minors to me in the big scheme of things and things that I can manage as in comparison to the pain last year and literally not being able to move, these are why to me they are now minor. I know it can rear its ugly head at any time, but all the while it’s good I’ll enjoy it 😍
It’s been one hell of a ride but Onwards and upwards I say. Long may it last 💜
Happy hump day guys, I hope everyone is having a lovely week! We had a super busy weekend but it was fab. Our friend Matty came and visited, it was so great to hang out with him and Olivia LOVES him. On Sunday we went over to Margate as the Soul Festival was on, it was a super cool vibe and not too sunny – perfect for vampires like me 🙈 we had a lush day and I didn’t even feel to bad on Monday so that’s a bonus! Olivia has a cold now, so I’m really hoping I don’t get that, but as the immune system is down (permanently) I probably will get it let’s be honest and it will last 8 weeks or so… fingers crossed though!
This week I wanted to share a very special friend of mines story/journey. Xersha was the first person I’d actually spoken to since I started my blog and she has helped me in many ways. To me Xersha is pretty much Wonder Woman and really does inspire me and you will read why ❤️
My age now, 43! I was diagnosed with lupus in February 2015, after a 3 week stint on the cardiac ward of my local hospital. During that time I was tested for everything under the sun, before somebody came up with the question, “have you ever been tested for Lupus” well I hadn’t been tested specifically but it had been mentioned to me on a couple of occasions. Firstly during one of many trips to A&E in the years previous to diagnosis. Secondly whilst we were going through IVF! A routine blood test the week before we were due to start our course of drugs and get the ball rolling, flagged up an inflammatory marker for Lupus. This meant our IVF journey was put on hold for 12 weeks, as that’s the earliest the test could be repeated. The second test was done and came back negative so we were free to start our IVF journey. A journey with two failed attempts. We have since found out that I was possibly in a flare when the first test was done, that’s why the markers showed up. We have also since found out that it was probably never going to work as on leaving the cardiac ward I was diagnosed with APS. (Antiphospholipid Syndrome) trying saying that one after a few!! APS and Lupus quite commonly go together I later found out. So with my already diagnosed APS, I went to my first appointment with my Lupus consultant expecting to be in there 30 min tops…..nope 3 hours!
My girls were waiting outside with the promise of a girly day and lunch. They weren’t impressed. I remember being given sooo much information, too much if I’m honest. To the point not much of it sank in straight away. I removed phoning Boe after the appointment and only being able to tell him I had been diagnosed with Lupus SLE, which was quite advanced due to the fact I had actually been unwell for at least 7 years prior to diagnosis. No ones fault, just no one connecting the dots to all the other hospital admissions. And believe me there was a lot!
So with my diagnosis, leaflets, Prescription and DVD (which to this day we have still not watched) I went home we talked about it that evening and that was probably it. I continued my day to day life. Not quite believing the diagnosis. After all I’m mum to a brood of 5, I ran my own business, which I was expanding, building the new website to go with it and generally just being mum. I was booked to see one of the lupus nurses a few weeks after to see how I was dealing with the diagnosis, medication and to answer any questions I may of had. Frustrated that this meant taking time out of work at one of my busiest times, I thought about cancelling, but I went….
Well the nurse talked I listened and clock watched. It was at that point she became quite firm with me and said you really don’t know how ill you are do you? No was my reply, I hadn’t read the info I hadn’t started the medication and if I’m honest I thought they had it all wrong. Well I was the one that was proven to be wrong. So much so I ended up in hospital on the stroke unit 8 weeks after diagnosis. That for me was my turn to start listening rather than thinking I knew best, thinking I was just tired, not ill.
The stroke unit was the wake up call I needed. Although after a wobble over being told I’d have to either take a break from work or give up completely, I soon found out that I couldn’t even run it anyway. I have been left with Left sided functional weakness and a brain that just will not retain information. After many frustrating days trying to run the business I knew what I had to do..
I sold my business in May 2015. To this day I know it was the best thing I could of done. But I miss it. It was now time to start realising I wasn’t well and deal with it.
Dealing with it was the hard bit. No one can say for sure if the stroke was from late diagnosis, or me not taking the medication or just something that was going to happen anyway. All I know is it changed my life dramatically.
Not able to walk properly, dress or shower myself, cook, drive or be the mum I used to be. I was no longer in charge, the boss as I am known to be called. I was now the one being looked after. So with my diagnosis of Lupus also came Raynaud’s and To date lupus has, possibly caused a stroke, given me pericarditis on too many occasions to remember, which has destroyed the tissue surrounding my heart. I now have Angina and newly diagnosed Superventricular Tachycardia. My heart can’t cope with day to day life. It doesn’t let me walk too far, it doesn’t like the cold and I can no longer do housework! Yes it has its plus points!!!!
I’ve had pneumonia a few times so the cold weather goes straight to my chest and lungs causing problems with breathing. My kidneys bleed. Although at the moment they are coping relatively well and not causing too many issues. This may well change in the future though.
I struggle to eat daily. Now I’m a food lover so not being able to eat kills me. I live on Marmite on toast and gallons of tonic water. Lupus really does get everywhere. I’m anaemic constantly. Lupus totally drains my iron stores.
My skin is scarred from thee worst rashes. I am one of the lucky ones in respect to the butterfly rash. I only get that lightly on my face, but the rest of my body gets very sore patches. Arms, legs, stomach, hips, neck and thighs. The debilitating tiredness is probably one of the hardest things to cope with being a parent though. Those days where you just can’t get out of bed, or off the sofa. That’s where my older children have stepped up and become the parent. I am very lucky that my diagnosis came when my children were old enough to understand mums not feeling well today could you take each other to school or help with evening meal. For that I will always be grateful to them.
Depression… Lupus really does put you in a lonely place. I was first diagnosed with depression in Aug 2015. I’ll be honest and tell you if it wasn’t for my GP I may not be here today. I was at a point of possibly ending my life. I just felt like I couldn’t cope anymore. That no one understood what I was going through. And I certainly didn’t want this to be the rest of my life!
I missed the old me massively. I missed not seeing friends, or being able to go out on a whim. Do all the things mums do and should do with their kids. Lupus is totally soul destroying at times. I soon realised that it wasn’t something you could just talk about either. Whenever you mention Lupus, people either say “what’s that” or “never heard of that before” therefore I would just say it’s an auto immune disease and leave it at that. They didn’t want to hear how it totally rules my life daily, how my organs don’t work and are just getting progressively worse. Thats what puts lupus sufferers in that…dark place.
Life hasn’t just changed for me though. I think we quite often over look those around us. My kids have suffered from me being ill and in and out of hospital of all the time. I can’t do the things for them that I used to do. They are usually doing things for me now.
My husband has taken the brunt of my mid understanding, not wanting to deal with things, me being ill, or in hospital. Having to look after me, the kids, the house, and work a full time job! At the end of 2015 my husband had to have time off work as it all just became too much. Being told this is wrong, that’s wrong, your wife is seriously ill and that I could actually die at anytime due to my APS. Boe ended up having a month off work due to depression and if I’m honest still isn’t right today. So lupus hasn’t just affected me it’s affected all of us.
Brain fog…good lord where to start. I truly have days where I do wonder how did I even get through today. My brain doesn’t retain information, I walk from one room to another and forget what I’m even there for. I forget how to do simple tasks. Remembering names or places, even just trying to get words out properly sometimes is a challenge in itself. Driving around bath, a city I have lived in for 15 years can be a nightmare. Simple routes from my house to the local supermarket or doctors, find me sat at the wheel thinking which road now!!!
Medication… you don’t even want to know. Let’s just say a cocktail of meds is putting it lightly and you probably wouldn’t believe me if I told you how many tablets I get through daily for the various conditions I’m treating!
Thank you Xersha, so heartbreaking to read and I can relate to a lot of what you’re saying. This is why you are an inspiration because you get on with it after everything you’re going through. I never hear you complaining and you offer advice and are there if I ever need you.
Hope everyone enjoys the rest of their week ❤️
It’s been a weird one for me over the last few weeks. Mentally, I’ve been a little all over the show. Not that you’d know it as I’ve become quite good at hiding it. Although it is totally fine to not be ok and I, like many others do crack and have absolute meltdowns, I am only human. I share a lot of my life with all of you as it helps me cope with my illness and also helps others. But I’m not quite ready to share this little I’ll say ‘blip’ as I’m not quite sure how else to put it. One day I may, just not right now.
On a positive note, I met with my specialist at the Lupus clinic on Friday, he is the nicest guy (other then Jack of course!) I always leave his room feeling good about myself and feeling happy/relieved. He is such a brilliant Dr and is SO clued up on Lupus, it’s amazing. He has also lost some weight and is looking pretty fine – for a way older guy! 😂😂 am I crushing on my consultant? Probs 🙈 who doesn’t like a silver fox. Don’t worry, I’d told Jack straight away how good Doc is looking haha! Also, I hope he never comes across this blog because I would have to change doctors!
Anyway, the appointment went well, I was 30 minutes late which is annoying as I HATE being late but luckily they are super chilled there on the ward, I did call to tell them I was running late and I have waited 3 hours for him before so I told him my lateness was payback which he laughed at. Probably thinking ‘you cow’… speaking of cows, on my train ride up I saw 3 tan coloured cows which I honestly thought were 3 lionesses in a field! Scared the life out of me, time for new glasses I think.
Back to the appointment as I’m getting side tracked by cow lions… so the weaning of steroids continues and I think I’ll be steroid free within the next 6-9 months which will be absolutely MAGICAL! 🙌🏻 and I’m back to my normal weight as the steroids did bloat me when I was taking a much higher dose. All my other meds are working wonders for me so I’ll stay on them and the doses I currently take. My blood levels are all great, my organs are still safe and overall he is super happy with my progress, it is all thanks to him though *all the love heart eyes* just kidding. I’m not that creepy… or am I?! But seriously, he knows his stuff and I couldn’t recommend the Louise Coote Lupus Ward at Guys Hospital enough. Actual life savers.
After my appointment my lovely friend Lisa who wrote for my blog last week came and met me. We met through Instagram and have been in touch for months and we finally met! It was so nice to spend time with someone who totally get it’s and feels the same aches and pains as you. We walked a hell of a lot! Pretty much all over London to get ice cream- it was pretty special ice cream, our legs both started really hurting and my ankles and feet were swelling by the second. We took a slow walk back to the station and I had my 2 hour 15 minute journey home. The train was very busy as it is from London until Sevenoaks but there was a window seat free so I politely asked the lady if I could sit there as she was on the aisle seat and my swollen legs were about to give way any second, she huffed and puffed and rolled her eyes, super pissed off that she had to me move for me. I was thinking don’t make me pull my disability card out lady and embarrass you on this extremely busy train. Then my elbow accidentally brushed her arm and you’d think I’d punched her in the tit. PEOPLE 🤦🏼♀️
Saturday morning wasn’t the best, I’m not going to lie. I woke up with the worst migraine, felt severely hungover and I was supposed to go out the Friday evening for my friends birthday drinks but literally didn’t have 1 bit of energy in me, so I wouldn’t have been much fun. So I still got the hangover without the enjoyment of celebrating Sandra’s big 3-0 luckily she understands that I’m a frail little human 😘 So yeah I had the migraine and the body pain. My legs were so sore, I felt like I’d done 10,000 squats, they ached and were sore to touch. In fact my whole body felt bruised to touch. Sensitive little soul me! Totally took it easy Saturday, Jack looked after me like the babe he is, bringing me tea and coffee and a bacon sarnie. I know that if I do have a busy day I just need a day to recover and then I’m ok. As yesterday I felt fine, I never thought I’d need a whole day to recover after walking to get ice cream though #rockandroll but as always it’s totally worth it 😍🍦👭
I hope everyone had a lovely weekend! We had a fun filled day on Saturday we went over to soft play, played in the outside park. Liv held an owl called Nevada and was told NOT to stroke, she did sneak in a quick stroke but I held her hand down after that 😂 and then we went out for dinner and I can’t quite believe it but I felt great Sunday! I had an amazing night sleep, 12 hours… a lovely 9am lay in and even coffee in bed 😍 but the main thing is I felt great, wasn’t sluggish or in any pain. I felt like myself. This NEVER happens, long may it last!
So last weeks blog was great, I really enjoyed sharing my friends stories and I’ve got some more to share this week and over the next few. This week Lisa, Becka and Gemma have shared their stories with me.
Lisa and I chat daily and we have gone from talking all things Lupus to pretty much everything you can imagine from awkward tinder dates, Justin Bieber to love island. I love Biebs, Lisa thinks I’m a weirdo 😂
Becka and I are a huge support to each other and it was so lovely to meet her at the fun run. I kind of see her as a little sister and my heart breaks for her that she’s dealing with this at such a young age. We speak a lot and get each other through the crap that gets thrown our way. All of these lovely girls are a huge support to me and some of many friendships I have made from having this disease (so it’s not all bad) Ok so here goes, please meet…
Hi my name is Lisa, 27 and I was diagnosed with lupus and hypothyroidism 2 years ago.
Life before lupus was very active I loved climbing mountains, going for long walks and was a regular at the gym. At 24 tiredness hit me like a brick and before long the only time spent awake was at work, even sleeping on my commute. I remember telling my family I was not coming home for Christmas that year saying I needed to sleep (it all seemed logical in my head but now I can see why it must have seemed crazy to them). By the time I turned 25 the pain started, my memory was getting really bad, my eyes were red and puffy more days than not and eventually I was dragging myself around trying not to collapse on the floor.
It took a while to absorb the news when I found out it was lupus but I realise I am very lucky it hasn’t attacked my organs and can only hope it never does. After finding Laurens blog on the lupus UK site I was able to relate to her so much. It’s horrible knowing so many people out there are going through the same thing but we are all there for eachother.
I don’t know what the future holds and sometimes thinking ahead can be terrifying. I may not be able to go on long walks like I used to but I have found other ways to workout which helps with pain. Luckily I was never a massive party animal as nights out are very rare these days. Even dating is a struggle yawning in front of the guy is probably not first date etiquette! At least one day of my weekend is spent in bed recharging for the working week. Symptoms will always come at the worst time so it is hard to plan anything.
The photos above show me before, at my worst and now. Apart from a few tell tale signs it is hard to know which is which showing what an invisible illness really looks like. Most importantly I have learned to stop feeling guilty about letting people down or needing rest days. Not everyone is going to understand this debilitating disease and people will always offer their ‘Expert’ advise. I have accepted that right now there is no cure and I have to manage my condition as best I see fit.
Hello! My name is Becka, I’m 25 years old and I was diagnosed with SLE (Lupus) in February of this year. Loz has kindly asked me to write a bit about my diagnosis story to help raise awareness to others, which I think is amazing, so thank you Loz.
Until September 2016, I’d always considered myself to be pretty healthy. I started to get horrible chest pain, I was in so much pain that I had paramedics to my house, and two trips to A&E. The pain felt as like what I imagine a heart attack to feel like, which sounds dramatic, but I was in agony. This pain lasted around 3 weeks and with the blood tests results and echocardiogram resulting in nothing, the doctor told me that it was suspected pericarditis. Luckily the pain started to go away, although it would occasionally come back. I was extremely grateful when results came back all okay from the hospital, however I knew something was not right. Between September and February, I had numerous other symptoms, which resulted in several visits to the doctors, but nothing was found. Plus, due to working two jobs and attending college I ignored a lot of things and just got on with life.
These symptoms included;
• Extreme joint pain
• Acid reflux
• Swollen joints
• Swollen lymph nodes
• Hair loss (at the time only eyelashes & eyebrows)
• Swollen ankles / legs
It wasn’t until the end of February that I started to really notice something was wrong. I woke up to a rash on my face and I had swollen legs / ankles. When I weighed myself I realised I had gained 5KG. I went to the doctors with a list of my symptoms, the visible rash on my face and my visibly swollen ankles / legs and I told the doctor that I had googled all of my symptoms and it had come up with Lupus. The doctor completely dismissed me, knowing what Lupus was, but telling me that I did not have that, instead prescribing me with a high dose of Ibuprofen, and recommending I left my face alone. This was on the Thursday and by Sunday my Dad had taken me to hospital where I was admitted as my kidneys were not functioning properly. I had a kidney biopsy and was told that I had SLE Nephritis stage 4. I was in hospital for 8 days, totally unaware of how serious Lupus can really be.
Since leaving hospital I am on a lot of different medications to help suppress my major flare up, and I also have regular hospital visits to monitor my progress. In the past few months it’s been extremely hard, I’ve had shingles, severe migraines, hair loss and chronic hives on my face, as well as having a moon face from the steroids, however I try to remember that this medication is helping me get better. Hopefully soon I can start to get my normal life back; it’s been very tough, and I know I’ve still got a long way to go. But I know that I will get there eventually. At the moment I have a lot of ups and downs, as I’m still adjusting to everything that has happened over the past few months, but I have wonderful support around me.
Seeing Loz’s blog and following her Instagram has helped me tremendously. Seeing how far she has come since her diagnosis and how well she is doing really comforts me. So thank you! I’ve found that reading other people’s stories can really help, as it makes you realise that there are other people going through exactly the same thing as you, making you feel less alone. However, I have also seen a lot of stories about Lupus online which have made me incredibly sad, the side affects and how people have been diagnosed for years and years, never seeming to get any better. I completely understand that I have the same illness, yet I try to avoid reading this, because I want to remain as positive as possible in my Lupus journey and know in myself that I can get back to health and get back to my normal life.
From reading Loz’s story and seeing how far she has come, sharing her photos and blog posts of her journey to help raise awareness, I think she is truly courageous and brave, and I am, as I’m sure many others are, very grateful for your posts. So, thank you. And thank you for asking me to write this.
I’m 34, I was diagnosed in 2008 (although I had it before that, in my teenage years) after I’d started a new job in a doctors surgery. I confided in a nurse there who also had lupus and she asked the doctors to test me for it. It came back positive, but who knows how long it would of taken had I not talked to her about my symptoms. The best I’ve ever felt was during my pregnancy (after the sickness subsided). I suffer with fatigue (the worst symptom), I struggle to get to sleep, vitiligo, raynauds, photosensitivity, rashes, I’ve had hair loss in the past and get ulcers when I’m low. My body aches and I feel like im coming down with ‘something’ alot of the time. Im on Hydroxychloroquine and I’ve had my fair share of steroids and azathioprine in the past.
I really have to pace myself and if I do too much I will definitely pay for it later. My mental health has certainly suffered a great deal.
My son Harris is one, at times I feel guilty because I want to do more but I’m lucky to have my family living close by for help and support. Harris gets me out of bed everyday, he is my motivation, his cheeky smile is my medicine.
Thank you girls for helping me with this, I really appreciate it. You are all so brave and awesome 💜
I hope everyone has a lovely week.
Wow what a weekend! We did our 5K fun run for Lupus UK, I’ve never felt more proud, a few years ago I wouldnt have battered an eyelid at 5k but now its different! I walked it of course (I was always going to walk it) but I did it in an hour so I’m over the moon with that. I’m overwhelmed by the support, the love and the donations, between us all we raised over £1300 for Lupus UK. The highlight for me was making it over that finish line with my little girl 💜 and meeting a fellow Lupus sufferer (I really hate that word but we do suffer!!) Becka and her lovely mum Helen, who got in touch with me through my blogs. Becka also raised an incredible amount of money and did so well! Walking with my friends and family was so wonderful, Devo’d Jack wasn’t there but he was there in spirit, always supporting me ❤️ waking up to a generous donation from my Aus family was just the best AND that they’d actually all got together and went on their own walk for me. I’m super lucky to be surrounded by so many brilliant humans, I feel SO loved!
Ok so I thought I’d do something a little different on my blog. Over the next few weeks I am going to be sharing some stories/journeys of some lovely ladies who have agreed to help me with this! Anything to raise more awareness 💜
If one good thing has come out of having a chronic illness it has to be the friendships I have made. Although I’ve not met these girls, barely two days go by that I don’t speak with them! They have helped me with my own journey in more ways then they may know and helped me not feel so alone. So thank you for helping me with this and raising more awareness and also thank you for being great girls who have offered me advice along the way and just been absolute stars in general! So here goes. This week please meet Lucy, Nicole and Sophie sharing their stories in their own words 💜
Lucy Walley 💗
Hello! My names Lucy, I’m 26 and I’m from Prestatyn in North Wales! Here’s my story… I was 22 and up until then I’d been as fit as a fiddle, one of those people who didn’t even take paracetamol! But that all soon changed! I was 21 weeks pregnant with my little girl (Daisy, she’s 3 now) and I was admitted to hospital and in intensive care and placed in an induced coma. I had double pneumonia and fluid around my heart, I was in hospital for almost 2 months, not quite the lovely, joyous pregnancy I was expecting!
Daisy came 6 weeks early at a tiny weight of 3lbs 11ozs and I felt a bit better for a little while. But then I started to feel awful, I couldn’t eat, I’d lost so much weight, I ached from head to toe, I had the rash, I couldn’t climb the stairs and some days my mum or whoever was around would have to pick Daisy up and pass her to me. I was back and forth to the doctors for a long time and then I got referred to the rheumatologist who diagnosed me with SLE. I then got referred to a nephrologist and weirdly enough he had been to see me in intensive care and remembered me! I had to have a biopsy on my kidney because that’s what my lupus decided to attack next! They told me that when I was so ill, it was my lupus starting off and my pregnancy had triggered it. (Daisy was more than worth it all though!) I was put on shed loads of steroids because they suppressed my immune system and I put on a lot of weight and it made me so unhappy 😢 the person who never even had paracetamol before now rattled when she walked!! But now I’m feeling much better! My medicine all seems to do the trick and they’re weaning me off steroids! I’m down to 2.5mgs. No more moon face! I had seen Lozzie write a post and I just bit the bullet and reached out to her! It’s so lovely talking to someone who goes through what you go through. Because not always do people understand what you’re going through because they don’t go through it themselves, which I can’t blame them… It is all pretty mind boggling! That’s another thing… my brains never been the same since!!! Loopy lupus Lucy! Amazingly Daisy came out perfect after our ordeal and I couldn’t be more proud!
Nicole Clarke 💜
I’m Nicole, I’m 23 and I got officially diagnosed with lupus about 6 months ago, I was also diagnosed with fibromyalgia a couple of weeks ago which so I’ve been told goes hand in hand with lupus. I’m currently trialling different medications but mostly on nerve anaesthetic tablets, steroids & pain medication. I have a 15 month old gorgeous little boy and one of the worlds best partners & family who hold my hand every step of the way and push me to keep going and not to lose my sparkle.
Some days are harder than others and the fatigue is the worst with an overactive 15 month old but you cope, you have no choice & you have too. Sometimes I lay in bed when I’ve already been here for 2 hours trying to get up and feel every bit of my body is sore and I feel sorry for myself but then remember that isn’t going to help anything and I try to remain positive. Until just recently I had nobody who understood fully, I had no friends in the “lupus world” and my friends in the real one can’t understand just how hard something like picking your baby up and taking them downstairs can be.
I’m so grateful I’ve now found friends like Lozzie who I can have a whinge and moan too and they get it and don’t judge & im slowly hoping to meet more people my age or in the same circumstances as me ☺️
Sophie Hopkins ❤️
Hey everyone, my name is Sophie and this is my Lupus story… Firstly I’d like to thank you Lauren for asking me to write for your blog. I found your page a while after I’d been diagnosed after searching and scrolling through hashtag’s on lupus, lupusflares, lupusrash – you name it, I searched. Yours was the only page where I thought ‘this girl is like me’! I followed you immediately and your blog too.
I was 15 when I first got my ‘lupus’ rash. My mum took me to the Doctors who had no idea what it was. She gave me some tablets and sent me on my way. That was the first of many trips, it was actually another 15 years until I was diagnosed. For the last 15 years I was told it was acne rosacea so I’d been given meds for that, which was probably just damaging me more and more.
Every spring, summer, autumn I’d get a flare but I just lived with it. Sometimes it affected me and one boyfriend told me my face was a mess. I always carried concealer and in my appraisals at work they mentioned I always had my mirror out but they didn’t realise I was so paranoid about myself.
When I fell pregnant with my little boy, Dylan, my skin was amazing. I thought I’d cured my rosacea. Even a couple of months after, it was still clear. Then in the December it started flaring but this time it was bad!
It covered my face completely, red lumps all over, even my chest. It stressed me out but the more it stressed me out, the worse it got. I saved so much money for my mat leave but I ended up spending £400 on products to help reduce the redness. I even put manuka honey on it at one point I was that desperate. I didn’t leave the house. My family, I later found out, had crisis talks because I was so depressed and I hated myself that much I just wanted to die. In the end I had to cover my mirrors in towels so that I didn’t check to see if it had gone down every 5 minutes. I was obsessed and getting really poorly.
The following Feb I was referred to a dermatologist in Harrogate and had tests and biopsies done. She knew it was lupus straight away and I was diagnosed with CLE (cutaneous lupus erythematosus). I was put on hydroxychloriquine and steroids. It went down but continued to flare constantly. It’s like my hormones had sent it into overdrive. When that didn’t work I was put on methotrexate but after 6 months I was still flaring badly. My dermatologist referred me to a Professor in Leeds and I was put on Chloroquine and a strong steroid ointment. I’ve been on that for a year now and it’s the best my skin has ever been. I still get the odd flare but I can handle them a lot better.
I realised, not so long ago that my friends and family love me for me, not my skin and Dylan doesn’t care what I look like. My partner, Phil tells me I’m beautiful every day. To him it’s just a bit of redness. Thanks to Instagram I’ve finally found people that understand what it feels like. Lupus will always be a part of me – because it’s incurable 😉 but I won’t let it beat me…it does get me down now and again and I still carry round my trusty pot of concealer but it doesn’t define who I am xx
What amazing stories from 3 beautiful girls. Seriously reading your stories has made me even more of an emotional wreck!! I know that’s sooo not like me 😂 you are all warriors and should be so proud of yourselves.
I’ll be back next week with more journeys from my lovely friends 😍 I hope you all have a great week!
Will the tiredness ever end? Will I ever have energy again? Will I ever have a spring in my step again?
I really bloody hope so because I am getting sick and tired of being sick and tired! I find that I always talk about the fatigue but that’s because that is the biggest thing for me at the moment. The one symptom that really does effect me as it does SO many others.
The rash… it went. The hair fell out… it grew back. The mouth ulcers, they come and go… But the fatigue is ALWAYS there. Lurking over me like a big black cloud. Some days it isn’t as bad as others. I can be fine some mornings, when I say fine I mean it takes me about an hour to get the energy to get up out of bed instead of 3. But it does take so much effort for me to get up, I leave my bed and have to have a rest on the sofa before I can get up again and make Olivia’s breakfast and my coffee. It’s actually a nightmare and in all honesty it’s not easy. I see a few dishes that need washing up and to me that is hard work now, standing at the sink for 5 minutes whilst my arthritis is killing my hands as I hold the plate and wipe it… that is a nightmare. Anyway I crack on with it and we go out on our little morning adventures and it’s usually in the afternoon that the fatigue literally runs into me like a freight train and then that’s it boom. My body is this heavy weight and my head is how I can only describe as being full of cotton wool, I feel hungover, I’ll get a migraine and I literally do not even have the energy to speak.
It’s weird though because in a way I am so used to always feeling like this now that I guess I’m getting used to it. I just want to know if I’m always going to feel like this?
I mentioned before that the cocktail of meds I’m on now are great for my skin which is a huge deal for me, so if I have to change up meds due to the exhaustion and joint pain etc will possible new meds not be ok for my skin? And in a weird way I think I’m probably coping a bit better with these symptoms because I do look more like my old self. Hmmm… why does it have to be so complicated.
I think if I had 12 hours of solid sleep every night and didn’t have to do a single thing all day I’d still feel like this!! Let’s hope this is a phase and it passes. Let’s as always stay positive 👌🏻 and let’s get on with it and show Lupus who’s boss – That’s me 😍
Yesterday we had the best day. We took Liv to Dreamland, it was her first time on rides and she had an absolute blast. That girl is a thrill seeker! She wanted to go on the bigger rides but the teacups, carousel and big “steering” wheel (as she calls it!) it was, the happiness on her face made my day. It was a hot day, we were lathered up in factor 50 (my best mate) sticking to shade as and where we could. Even if I wasn’t sensitive to UV I’d still always stay away from it as I just don’t enjoy being in the sun sweating my eyesballs out and Jacks the same. We heart the shade 😍 we got home at around 5 and I was shattered as you can imagine. But could I sleep that night?? Of course I couldn’t! Hello migraine, hello itchy feet. I know a few other people that suffer with itchy feet with their Lupus, it’s actually really annoying and can get you down! They don’t stop itching!!!! My legs were aching like no other, they felt dead, so trying to get comfortable was out of the window and it was also about 60 million degrees 😂 might change my blog name to Lozziethemoaner haha I finally slipped into a deep sleep, I’m not sure what time it was but suddenly I’m aware that Olivia is standing over me STROKING my head whispering ‘Drink’. Scared the absolute life out of me haha!!! Luckily she went straight back to sleep, wish I could say the same for me. I must have dozed off, had some weird freaky dreams and then was woken at around 4 by the seagulls. All in all a great night sleep 🤔
Thankful for coffee and lots of it. Thankful that my rash doesn’t come back in the sun. And thankful I’m able to make these lovely memories even if the consequences do suck a little.
Happy Monday lovelies.
I’ve seen a few things now on forums and chats where people are saying how they’ve lost some friends since becoming ill. And I do believe that it does take something like the diagnosis of an illness to make you realise who will be in your life for good and who your true friends are. Some people won’t understand and that is TOTALLY fine, I mean how can you expect somebody to fully understand something that they aren’t going through. It’s hard. Sometimes I don’t even understand what I’m going through haha!
And there are certain things I don’t understand but would try and think about how life would be in that persons situation. So yes I think you can try to understand and also be patient, that’s more then enough. I am so lucky to be surrounded people who love me, help me, make time for me and truly care about me. I’m so grateful.
One of the worst things for me personally is not being able to make plans. I mean I do put in as much effort as my body will physically let me but when I do have to cancel I really worry about what friends will think – am I a let down? Is it a cop out? Because telling someone I’m ‘too tired’ does sound like an excuse doesn’t it? Life is tiring for everyone especially with an illness and a toddler thrown in the mix. And if you do always cancel people then they probably will stop putting in the effort and inviting you but that’s ok. Everyone is also very busy with their own lives and we all know the time flies.
Then I tell myself, the people that matter will completely understand. I don’t really make plans in the evenings as I know I’ll 99.9% have to cancel as I really am just too exhausted.
It’s weird at the moment, I think I’m in a flare. Not a skin flare but a fatigued/joint pain flare. My body hurts a hell of a lot. I’ll be speaking with my specialist in July but I then worry that I’ll be started on ANOTHER medication or taken off one I’m already on and switched to new ones and then I think well what if that ones then bad for my skin and that flares up again? Should I just not say anything? No I must of course I must. It’s all just so complicated! Why can’t there just be one medication to fix everything and make it all go away. PAH!
Going back to people understanding and sticking by you etc. I don’t think you should ever be resentful towards those people, like I said not everyone will understand the pain you are going through and the fact that you do put a front on. And because well the majority of us with these diseases do look well it makes it a lot harder to comprehend. If anything it makes us appreciate the ones we do have even more. Jack is my rock, everything he does is to make my life easier, he keeps me smiling and I love him so much for that. My family and friends are also incredible. Some of my friendships are what I like to call low maintenance, we don’t have to talk every single day but I know they are there for me as I am for them and I hope they know that! Friendships like that are true and easy. Easy is good. Obvs I speak to my girls every day, whether it’s a skype, a whatsapp or even a meme 😂 I love my friends though and they know that and I consider myself very lucky.
I think since becoming ill it has changed me as a person massively, my attitude towards things, towards people. I appreciate things a lot more and I think I even love a little harder. I continue to take every day as it comes and crack on with it where I can. It’s definitely made me a stronger and more positive person.
That’s it from me. I hope everyone has a lovely week💜
Insomnia and extreme fatigue.. Something I have spoken about before and it still just makes zero sense to me. I can’t sleep, I think the heat has a huge part to blame for that but I am awake from about 1 until 3 most nights. WIDE awake, more awake then I am during the day YET I’m always so exhausted. I feel severely hungover errrrrrrr’day and I’ve bloody had enough quite frankly!
There’s tired, I used to complain about being tired and now I would love nothing more then to just to ‘tired’.
Fatigue is exhausting, it aches your body. Your eyes hurt, actually they sting. Something as little as walking up the stairs feels like a marathon. I had to do the dreaded food shop today and the thought of it alone made me want to shed a little tear. A food shop shouldn’t be hard work? It shouldn’t take the efforts I had to put in to just go to the shops and put food in a trolley but it did and it does. Then there’s the packing it into the bags (I’m an Aldi shopper, so have to pack my own bags) maybe I need to up my game and get to Tesco… (do they help you pack?) packing is hard as I have arthritis, so it pains me. Then lifting the bags back into the trolley kill my bag so all in all shopping is a bloody task and a half! I’ve been back 2 hours and have been laid up on my bed the entire time.
I’ve been thinking about other symptoms recently, certain feels that I have been feeling and again haven’t really thought too much about them, but then I see comments on Lupus pages and forums and realise these are all caused by this shitty disease. So let’s have a recap-
We have the hair loss, which mine is still falling out and I look like a bear with the amount of hair that’s covering my back after I’ve washed it.
The fatigue, which makes me feel like a super lazy slob – thanks fatigue!
The mouth, nose and ear ulcers. Yes ear ulcers are a thing and they suck.
The rash and the sensitivity to UV. I will never be tanned again! Fake bake will have to do. But I am super thankful I can be out and about now in the sun and NOT flare up seeing as last year I couldn’t leave my house. Factor 50 is my BFF and I never leave the house without it 🙌🏻
The organ failure, touch wood I am very lucky that my organs are ok at the moment but we all know that could change at any time.
The joint pain, were us spring chickens (am I still classed as a spring chicken at 28?) feel like OAPs and everything is an absolute mission. Like putting my make up on, that hurts. Holding my phone, colouring in with Olivia and holding up the GHDs to do my hair. All of these things hurt me.
The tightness of my chest and the real shortness of breath, even from just standing up or having a conversation.
The brain fog, this has actually improved for me recently, it’s still there but last year I would avoid people I knew in the street purely to save myself of the embarrassment that was not being able to string a sentence along without getting completely stumped for words and literally having no idea what I was talking about.
The constant flu like feeling, there’s not a day I don’t wake without a stuffy head and a sore throat and sorry to be grim but a LOT of snot.
The dry eyes. God they are dry, sometimes I think when I blink they will get stuck and be closed forever 😂 Need. More. Drops.
The TJD, like come on Lupus? This isn’t fair? Even my jaw hurts! I can’t eat anything too chewy because its an absolute work out and it’s so painful! Which then brings me to the tooth pain too. My teeth hurt and I suppose you could say ache? It’s so strange.
That’s all (all she says!!) I can think of at the moment, I’m sure more will come to me as soon as I post this!
So, yeah basically that’s it. A whole heap of feeling like absolute crap bags! I apologise for the super whiney post this week, I actually wasn’t going to write at all as I’ve just been feeling a bit bleugh and I find when I’m not feeling quite right the words don’t come too easily. But here it is, another honest blog.
Other then being tired AF. Everything’s OK!
That’s all this week, off to nap now 😂