Welcome! 😍 I’m a 29 year old mama of one who’s been living in Australia for the last 6 years and then moved back to the UK after diagnosis, I’m just sharing some honest snippets of my life with my husband Jack and our crazy threenager 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 have now been in remission since January 2017!
As Mondays go today has been pretty productive and… I found 20 bucks on the floor! Winner!
So you remember me telling you how much I loved my GP before? Well I went to make an appointment with her last week to be told she’s left the surgery! I couldn’t believe it, just when I found an amazing doctor she was gone just like that. I was booked in with another lady, Dr Michelle.
So I saw her today and well she is just as wonderful. So welcoming and lovely, she took her time with me, explaining things. No rushing, the thing is I find with doctors over here is they actually care about their patients and they take their time to research the best specialists, it’s so refreshing considering in the UK the dr told me she wouldn’t even refer me! Olivia was with me and she was so great with her, letting her be her assistant and didn’t mind her shutting the curtain around the bed, pretending she was a Dr. I had a few things to discuss with her for Liv and myself.
Firstly Olivia… When I was pregnant I had to have a growth scan at 37 weeks and they found her left kidney was dilated, so when she was around 6 months old we went to Westmead Children’s hospital and that’s where she had her first lot of ultra sounds and the dye etc at the renal clinic to see what this naughty kidney was up to. Long story short it wasn’t causing any pain or real issues. Anyway she’s had scans every 6-12 months, both here and in the UK. So today we got a referral for her to go back to the children’s hospital for another check up, hopefully this time just an ultra sound and not the dye as that takes a long time and as she gets older it gets slightly harder having her strapped to a machine for 40 minutes at a time 🙈 she’s also got a referral to see a paediatrician, as I’m now worrying the kidney is linked to the lupus, I also noticed she’s been getting mouth ulcers which is one of my symptoms, now I know I may sound like I’m panicking and being OTT but it’s best to get her checked. Although my Dr told me lupus is very uncommon in small children she is still more at risk because of me. Fingers crossed it’s nothing. I mean she’s fine in herself, more than fine – we all know that 😂🙈
For me, I got my results for my blood tests and the (gross) samples, they all came back fine! No infections, no bacteria all clear. So these tummy issues could purely be a side affect of my azathioprine. My lupus markers are all still normal so that’s good, it’s all under control. But they did pick up that my thyroid level is high, so I’ve had further bloods to test that again. If it’s not one thing it’s another… like I’ve said before, you kind of become numb to these things when there’s so many problems. The nurse who does my bloods LOVES Liv and saw us after the appointment and bought her a Kinder bunny, so sweet 😍 she has taken my blood 5 times this year so I’m definitely a regular! Anyhow I also explained to the Dr how else I’ve been feeling recently with all these other aches and pains. The headaches, body pain, pins and needles in my hands and feet, constant feeling of a sore/swollen throat, stiff body, fatigue etc and she thinks it does sound like fibromyalgia. I’m booked in to see the rheumatologist on the 21st March, let’s hope he’s as hot as Dr Sanna – oh shit did I say hot, I meant good 😂
Finally I wanted to talk to her about my mental health, things do take its toll on your mental health when your physical health is going to shit. They go hand in hand. I mean how positive and happy can you be when you are in pain 24/7. It’s hard and it makes you feel extremely low, you can’t always put on that smile and get on with the day, you want to stay in your room all day in the dark and speak to no body and cry. I’m sure many of you can relate. So I’m going back Friday to sit with her to start what’s called “my mental health plan” I’ll fill out some paperwork and then I’ll go see a psychologist. I know it’s going to be an emotional rollercoaster but I know how important it is and it will be for the best. I have my DEXA scan on Monday, that’s to check my bones for osteoporosis and then I just have to book my MRI for my tumour on my liver and then I’m all up to date. A day in the life hey 🙈
That’s all for now. I’ll keep you posted! Thanks for reading and for always being so bloody fabulous and supportive, I love you all!
This is for my fellow mamas/papas out there who are suffering with any chronic illness… Guys! How bloody tough is it?!
I find myself going through these stages where I feel like a terrible mum because I can’t do things I’d be able to do if I had my health and it makes me feel like I’m letting Olivia down.
I feel like some days all I say is “mummy can’t do that darling” or “mummies too tired” “mummy needs a lie down and I’ll be with you” knowing full well I won’t because It hurts to move and it makes me feel lazy and shit! I do always push myself though and always will for her but my body just reminds me that it’s not that easy anymore.
For example last night, whilst Olivia was waiting for her dinner, we put on some music “Trolls” soundtrack and we had a little dance together, now I didn’t do anything to extra… no back flips or body popping – just a little silly dancing and the robot and about an hour later I am laid up in all kinds of pain. My knees and ankles swell and my legs throb, the thigh pain is outrageous. I have to lay down and keep them elevated! All this pain and grief from 10 minutes of fun with my girl.
Today we went for a walk to the park and Liv wanted me to go down the slide with her and jump on the trampoline with her and chase her around and I physically can’t do that, I don’t even know if she understands but it breaks my heart having to say no all the time. Will her childhood memories be of me constantly saying no and not being able to do certain things with her? We’re back home now and I need to make lunch but my legs are burning, sore and swollen. It’s taking everything for me to get up and even make lunch… which is such a small task to a person with there health. It’s like climbing a mountain for me. This isn’t a pity party I just want to know if other parents feel like this?
Some days I could probably lay in bed all day, I could sleep all day – I still wouldn’t feel rested so there wouldn’t even be any point in that! Mornings are a struggle, Liv comes in at 7, which to me isn’t early, but from my Initial wake up from her it then takes me about an hour to actually wake up and get out of bed. My head is foggy I’ve said before it’s like my brain is stuffed with cotton wool, I feel hungover.
I don’t have a bad life, far from it and I’ve adapted pretty well with my “new” life so to speak and I always think of the good things in my life and what I’m grateful for but sometimes I can’t help thinking how crap this is and why me? And that this is actually my forever now… I wish it was just a bad dream that I’d wake up from it and feel fit and healthy! I’m not a jealous person but I am actually a bit envious of people with full health, you guys honestly don’t know how lucky you are and I certainly took my health for granted pre Diagnosis and probably didn’t look after my body as much as I could have.
Anyway, my darling girl Olivia – remember although mummy can’t do certain things other mummy’s can and I can’t keep up with you most days, you are my world I love you with all my heart and more and I’ll always try my best 👯❤️
That’s it from me, have a fab week.
Love Lauren the 29 year old trapped in the 99 year olds body 🙈
So recently it’s been appointments galore. I found an amazing GP since moving back to Sydney, who is young, smart, super clued up on everything and you can tell she actually cares. Basically I want her to be my best friend and I love her, she’s so thorough which is how a doctor should be. I had routine bloods last week and all the results came back good, my Levels are still good so Lupus related that’s all ok. But of course having a chronic illness isn’t plain sailing and of course brings other problems.
I’ve been having a real shit time recently with my stomach, no pun intended… I’ve been in a whole world of pain, constantly having to rush to a loo and some days I look 7 months pregnant. This stuffs up my plans sometimes which is a real pain in the arse (omg I can’t stop with these awful puns paha!) I’ve had to cancel plans when I’ve had severe abdominal pain and bloating. This could be stress related but could also be a few other things. So I am now being tested for coeliac disease plus CMV or the troubles could also be caused by the medications I have to take daily. I had more bloods, nurses love my juicy veins, they seriously get excited at the sight of them, I’m glad I can be such a help.
Also may be TMI but I’m honest and open so here goes… guys I have to do some samples and they aren’t urine… I’ll let you use your imaginations. The next few days are going to be super fun for me, I must have done some real shitty things in a former life 😂 Honestly though I’m mortified at the thought of this and I think I’ll lose a bit of my dignity As I’m losing some now whilst I’m telling all of you 🤦🏼♀️ please someone tell me I’m not alone here?!
I don’t think you’re ever really safe once you’ve been diagnosed with chronic illness and there always seems to be something. So – CMV which is Cytomegalovirus infection, basically people with weakened immune systems can develop a more severe illness which may include infections of the blood, central nervous system, bowel, liver, kidneys, lungs or eyes. I’ve never heard of but like Lupus, is there for life and a few other symptoms include jaundice, sore throat, fever and the abdominal pain. I’m not sure what the results will come back as but I’m really hoping it’s side affect from the meds.
I’m still waiting on my rheumatologist appointment and I can’t wait, as my bloods are all still good I know I’ll be able to wean off the steroids again. I’m currently on 5mg so I’m really bloody close to getting off of them. I’ve been on them for 2 years now I very first started on 7.5mg and went all the way up to 60mg over the months, which brings me to my next scan! I’m booked in for a DEXA scan which will check my bone density, so I’ll have my spine scanned to check for osteoporosis which is something you can get from taking steroids, I was told I should have had a DEXA scan when I was first started on steroids and also you should have one if you’ve been on 5mg daily pred for 3 months and well like I said I’ve been on them for almost 2 years now, so I’m not entirely looking forward to that. But let’s stay positive!
That’s it for now, sorry it was a bit grim!
Happy hump day 😃
So today marks a year of remission for me! One whole year since I had that appointment that left me feeling happy, truley happy. It’s been a year of feeling like my old self, a year of looking like the old me, hair growth and faded scars. A year of making hundreds of memories with my family and friends and just back to living the life of a fairly normal 28 year old.
30th December 2016 – appointment day, I always felt nervous the mornings of my appointment, this one was just local so no traveling to London. I remember the day like it was yesterday. I’d ask mum to come with me for two reasons, the first being that there’s usually some bad news which leaves me feeling pretty shitty and second being that my memory is so awful and I’d literally forget everything my rheumatologist would tell me! So off we went, mum picked me up, and went and had our coffee fix and then went to the hospital. I had my usual blood pressure and weight check with the nurses and then back out to the waiting room, which would always feel like you’d been there waiting for hours, I’d make small awkward chat too… just because inside I’d be crapping myself – will my blood results be ok? Are my organs still ok? Will I be on steroids for the rest of my life?! You get my drift!
Dr Khan called us in, Firstly my weight has been dropping each time which was great as a year of high doses of steroids had caused me to gain about a stone and a half. The heaviest I’ve ever been, my clothes had been tight and the water on my face made me look like a hamster with stuffed cheeks and I just felt so self conscious! I hated to smile. I could feel my cheeks right up under my eyes 🙈 my blood pressure was fine. He got my results up from the previous 3 months of blood tests and my notes. He basically showed me my lupus on a chart, all of 2016 my lupus was very active so it was sky high on the chart. I was in a very bad flare for a very long time, I was in and out of hospital. I was fatigued, had the burning rash all over my face, chest and hands, I’d lost my hair, always had a mouth full of ulcers, body pains, joint pain, I was depressed, shortness of breath – a conversation would even leave me breathless and so on… 2016 was not my year! Looking at his screen now, he showed me how over the time the line of my levels had been gradually dropping and was now completely flat lined so to speak. His smile said it all and his words made me cry tears of joy. “Your Lupus is in a stable condition and it’s not classed as active lupus” I know things can change at any time with Lupus, but no one could take that moment away from me. I’m welling up thinking about it now! I looked at mum and she was crying too. I still had regular bloods and check ups and each time I had the same results, no change. My organs were all still fine. We left that appointment feeling so relieved, I immediately called Jack and everyone else to tell them the good news, the news I honestly didn’t think I’d be hearing. We went for a celebratory coffee and cake and I’m so glad mum came with me that day ❤️
2017 was great for me and us as a family. I was able to take Olivia out a lot, we made so many memories. Nothing makes me happier than being out and about with her. I still have the odd fatigued day, I still suffer with arthritis but compared to how I was that is completely manageable. I know that I can’t do things exactly how I used too, I am tired, but I’m also not 18 anymore and Olivia has decided she doesn’t really like to sleep much anymore so that is rough!! How can she not like sleep? It’s the best 😂 I do live a normal life though and that’s something I honestly thought had been taken away from me.
I’ll be forever grateful for the support from Jack and my family and friends – old and new, I couldn’t have got through the bad days without them, thank you for never giving up on me and for being there every step of the way. I’m due to see a rheumatologist in January, so I’ll give an update on that appointment! But fingers crossed it’s still good news 😍
Happy new year guys, here’s to a happy, healthy and hopefully even better 2018 💜
Love Lauren 💕
So I wanted to talk about periods and lupus. Soz if some of you may think it’s too much information but I wanted to hear from others about how they feel physically and mental when it’s their “time of the month” because for me it turns me into an absolute basket case and it’s only since the Lupus!
It always starts with the feels of a flare- the fatigue lurks in, the joints start to really hurt, my tongue is covered in ulcers and I just feel pretty grim in general. But the physical side I can deal with… well I say I can, I need a days bed rest but what’s one day. What I can’t deal with is the mental side of things and how I feel those few days before Mother Nature does her thang… aka ruining mine (and Jacks) life! Dramatic, as always I know but seriously it is awful.
So it starts with the reminder that I have Lupus, as I have been feeling a lot better it’s easier to forget I have an incurable chronic illness (apart from the handful of pills I chow down each day) but when I’m due on it’s all I think about and I cry, I actually sob and I can’t stop. Anything from an hour to a few the tears keep on coming. I keep myself to myself, I hide away, I don’t want to talk or be social – something I bloody love! I think about flare ups, I think about dying at a young age, I think about kidney failure, I think about my tumour in my liver… I THINK. And it drives me insane. Jack notices my mood immediately, he knows me more than I know me. Mostly because I don’t stop whinging and have a face like a slapped arse. He says “you’re due on” and me being me “ummm, no I’m not!” It seriously drains the life out of me/us.
I then get it into my head that I have no friends and no one likes me… why would they? I’m a grumpy cow 😂 it makes me overthink my life decisions, was moving the right choice? Is Olivia punishing me with her outrageous behaviour because I moved her away from the life she knew and loved. I tell Jack I’m going to go back to the UK… I’m not, as if he’d ever get away from me that easily and of course I wouldn’t want to be without him, but you get the jist. After 2 days of migraines, what I’m thinking is a flare, enough tears to fill up a bathtub and BOOM there she is… that mother effing period. I message Jack of course and tell him to which he replies “I know babe, I always know” Haha! I feel fine now, it’s just those painful few days before, does anyone else suffer the same way I do? Or is it just me? Please tell me I’m not the only one.
Anyway… Jack, I’m not leaving and I’m sorry I put you through this each month, I love you so much and even though I hate to admit it, you are always right about this and I’m just a stubborn moo. I take my hat off to you for having to deal with your crazy wife 😂
Mother Nature, I’m not your biggest fan but thankfully these feels are only 2 days out of a month.
I’ve not blogged in a while, as you know we moved back to Australia. So the last few weeks have been pretty hectic what with packing up our lives and home in England, deciding what to pack in our cases… a lot of shoes for me! Records for Jack and fancy dress for Liv 😂 I have never been so busy in my life, out at 9am and home at 5pm most days cramming every little bit of my time with my friends and family and making as many memories as we could. Getting home and then continuing with packing and selling things you get the jist of it… tiring stuff. BUT the most important thing is it didn’t wreck me, it didn’t make me feel poorly. I handled it so well, I’m ok to say that right? Bloody proud of myself and thank you body for once being on my side, I’m definitely owed it though even if I do say so myself!
The Monday came around super fast and we were leaving for the airport at 1pm. My mum, dad, sisters, nephew and grandparents came over to help with last minute bits and to then say the dreaded goodbyes, which absolutely broke my heart. I will be forever grateful for everything my family did for me and my little family during our 18 months back. I couldn’t have got better or where I am today without them. I’m a very lucky girl.
The journey was as expected… HELL 🙈 jetlag isn’t great at the best of times but add a 3 year old to the mix and 2 parents who haven’t slept for 2 days and yeah well I’ll let you use your imaginations. It probably took us 4/5 days to start feeling normal, but I still felt well, it purely was just the normal jet lag feels. The feeling like you’re on a boat and just need a lie down. Olivia has been very up and down, it’s such a big change for a little person. She keeps asking “can we go back to our old house now,” “can I go to nannys house?” “Can alby come and play with me Today?” “I’ve lost my friends” BUT I know in time she will be just fine it will just take a little longer for her to adjust as she doesn’t really understand what’s going on, but she’s still her usual crazy happy self and that’s the main thing. She already has her little friend Ivy who lives so close so we will be cramming in all the play dates, and our friends Tash and Ella who are from home, Olivia can literally make a best friend within 5 minutes 😍 plus I’m waiting to view a pre school and this mama is going back to work- I’ve never been SO excited to go to work, don’t get me wrong I’ve enjoyed this time off to spend with Liv, as I went back to work full time when she was 4 months and then had to leave after I was diagnosed in 2016. But now we are ready for the next chapter, I will go to work and Liv will go to school and it will do us the world of good. I still can’t believe I managed to parent or even life during the peak of my flares last year… but I did it and here I am telling the tale.
I know I can flare up at any time, so I take every day as it comes. Since we’ve been home we have been pretty busy. We celebrated our friend Dave and Leah’s engagement, we are still celebrating one of my best friend Anita’s 30th… she’s 30 she needs all the celebrations- my social calendar is back to what it should be as a 28 year old, being back with our friends is just amazing, my face constantly aches from smiling and laughing with these guys, laughter is the best medicine… as well as my pred, azathioprine, hydroxy etc etc!
But I can honestly say I’m feeling better then ever. The warmer weather is making me feel so great, the fatigue is hardly there. My joints are looser. I feel like my old self, the old lauren with her crazy banter and always laughing and it makes me so very happy. Jack did everything in his power to make our move back as stress free as possible and I couldn’t thank him enough, from booking our flights, to arranging our things to be shipped over and just keeping me calm in my mad moments of doubt. The best thing for me is seeing him happy and truly smiling again.
I was in the pits last year, the lowest of the low so I’m hoping this will give others hope that there is light at the end of the tunnel and even on your darkest days, the days where you don’t leave your bed and you can’t stop crying and you think this is your life forever, it’s not ❤️
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 ❤️