It's a Family Trait.

Before you read this please be aware that this is MY life, my story. It may be a long blog post but I wasn't going to cut it down in the hopes that more people would read it. You may find the content upsetting/disturbing. I won't apologise for this because it actually happened to me and I wanted to share the story. If you're going to comment, that's great! If you have something negative to say, please say it elsewhere. So, grab yourself a nice cuppa and settle down,  it's reading time!  

*Thank you*

I was 12 when I lost my Granny. It's really odd to think it was 16 years ago because it really doesn't feel like it. I still dream about it, about the last time I saw her and heard her voice. She was in the hospital and everything about her seemed to have changed. Her strong, Scottish voice sounded weak but happy, in a forced way. I can remember her saying she was fine as I played with my yo-yo (playground trends repeat themselves huh?!). I'm already welling up and looking at the screen through glazed eyes but I really feel I need to do this. She'd lost her sight, her stomach was swollen like she was pregnant - such a shock to me because I don't think I ever thought of my Granny as fat or big so to suddenly have this stomach really surprised me. 

My Granny

The fact that she was in hospital wasn't a huge shock, I mean to say, it wasn't my first experience of her being ill. She'd had a heart attack 2 years before. To give you an idea of the kind of woman she was, she called an ambulance and then went downstairs to open the door to her flat. Whilst having a heart attack. She was one tough cookie, My Mum tell's me the greatest stories of when she was a kid, all the things that went on that my Granny pulled through. She was strong. According to my Mum it's a family trait...

When Granny passed away I was devastated but I'm not sure how much it showed. I don't remember crying but I must have, I've certainly cried a million times since. We didn't know, until afterwards, that my Granny had Lupus. We didn't even know what Lupus was which I think is understandable, I meet a great many people now who have never heard of it and there's so much information available now. It was Kidney failure, I believe, that they said she officially 'died' from. Obviously, Lupus played it's part.

I wear my Lupus wristband every day. 

I'm not exactly sure on the time frame but within a year, test's had revealed that my Mum has Lupus too. She did well initially but the shock, the grief, the worry and the disease itself took hold and she became really ill. I have a memory that will stay will me for life of my stroppy, hormonal teenage years. Whilst speaking to my Dad's parents about morning routine before school I said something about taking Mum a coffee in the morning. I was asked if Mum got up with me to make breakfast and stuff and I replied, really harshly, that she was never up in the morning. I had no idea then how hard it was for her. I had no idea that what I'd said had hurt her so much, I was 13 and although I didn't have a 'difficult' teenage phase or anything I think that will stick in my mind as one of the worst things I have ever said about my Mum. And she was there, so she heard it and was hurt by it. If my Mum ever read's this: I'm sorry Mum, I'd let you sleep until 10 every day if it would make you better. 

If I'm completely honest, Mum's diagnosis and treatment and everything kind of passed me by. I knew about it and everything but she went some way to keeping the details from me. I know now about how certain things developed and how she had to go for certain procedures but really, I was focussed on school and more preoccupied with the fact that I knew my parents were trying for a baby and nothing was happening. That's what I remember the most. As time went by, Lupus was just something we dealt with, Mum was stable, no major problems, no flares so life continued to go on. The main difference was that Mum couldn't work any more because of the fatigue and trying to manage the symptoms. 

When I was 15 my Mum found out that she was pregnant. I was so happy, and terrified. Nobody knew how pregnancy would affect Mum and I knew she had to stop taking Steroids while she was pregnant and they seemed to be the most effective drug she was taking. Luckily, by this time, Mum had been under the care of a Doctor as St Thomas' Lupus Trust in London and they looked after her really well. Lot's of scan's and check-ups and sure enough, in December 2001 Adam was born without any major problems. Mum did have a few issues and she had to inject herself to thin her blood to avoid clots but otherwise, everything was fine and we had a gorgeous baby in the house! Mum made it through, because she's strong (it's a family trait).

Skipping forward a few years to me at Uni and I started to complain about a few niggly things medically. I'd been told at 16 I had arthritis in my knees and the pain really was getting worse. I suffered recurrent urine infections, I had problems with numbness and tingling in my hands and, even worse for a 20 year old, I was really struggling with pain during and after sex. I had swab after swab, I was told it was probably an STI from one doctor! I had blood test's which revealed nothing. My thyroid was checked, they diagnosed Glandular fever, migraines, cystitis. Eventually I was told that if I lost weight a lot of my symptoms would probably clear up. Great huh?

Thing's had settled down and then I had to have my tonsils removed. The operation was painful, I took a while to wake up but other than that I was discharged like a normal patient and went back a week later to check all was well and it was. That day I could hear a noise like bubbles in my ears, like air escaping. I didn't want to drink anything. around midnight my parent's and I went up to bed. I was the last one up because I needed to swallow all my pills. I didn't want to because they fizzed in the water and I didn't want the bubbles on my throat. I went into the bathroom and I could feel my nose running (summer, allergies). I went to get some tissue when suddenly I felt the right side of my throat 'undo'. The blood came fast and I could feel the panic set in. I calmed myself down, trying to slow my heart, I couldn't put pressure on the bleeding and I was feeling faint. I could see the blood on the walls and on the floor so I stood over the sink and I could feel my legs turning to jelly. I couldn't shout, obviously. I wanted to stay in the bathroom (to avoid getting blood on the hall carpet which was new.... the brain in shock is a funny thing) so I opened the door and started throwing things at my parents bedroom door. Toothpaste, mouthwash, everything. Mum came running out and the ambulance was called. 

I remember my Dad, a paramedic, keeping me calm, keeping me concious. I clearly remember him telling Mum to 'put some bloody clothes on' (you've got to laugh!). The bleeding slowed purely because I was running out of blood. I wasn't actually surprised because he'd warned me about all the horror stories of surgery so I was thinking it was ok, this does happen to people. I found out later that he'd lied to me. He'd told me horror stories that weren't real. Now the horror story is what happened to me, he said it was the worst post-operative bleed he'd seen. For some reason I'd suffered a haemorrhage even though I looked recovered and had no sign of infection. I made it through, they discharged me from hospital a day later. One day.

A week later I was driving myself crazy. I had nightmares, struggled to eat and drink, wouldn't have a bath on my own. Age 20 and having a bath with the door open as my Mum sat in the hall having a chat about anything OTHER than why I was bathing with the door open. If I stopped talking or went quiet Mum worried. I know neither of us slept, I know my Dad didn't sleep. It had been 6 days and I was restless, we hadn't really been anywhere and I went downstairs because I wanted something to eat. In the kitchen I fancied some custard, I popped it in the microwave and bent down to open the lower cupboard door. I remember just shouting 'no' as the right side of my throat 'undid' and the blood started. Mum heard me thank goodness, and my Dad was a sleep following a night shift. This felt worse. It felt faster, I wasn't as calm. I remember thinking 'is this always going to happen?'. I'll be very honest and say that I had no willpower this time, no energy to stay concious. I think I blacked out. At the hospital a blood transfusion was ordered after a blood count revealed I'd lost almost all my blood. My Dad, without question, saved my life. He put the lines into my arms while my veins were still visible which enable the hospital team to get blood and fluids into me immediately on arrival. He was me Hero. 

What nobody could work out is why this happened. No infections, no complications after the surgery, the stitches healed, I was eating, I had no scar tissue. I was discharged, went back to Uni, I carried on. 

Between the ages of 21 and 27 I battled on through depression, fatigue, pain, infections, hair loss, mouth ulcers, my skin hurt (to the touch) mid cycle bleeding and my sex life... well, I didn't have one, it hurt too much. I'd been poked, prodded, swabbed, scanned. We'd ruled out endometriosis, cancer, thyroid problem's, arthritis, STI's (haha, like I had any sex to get an infection from!). At age 23 we had a really difficult family time, Mum got sick and was in hospital. It was really touch and go for a bit and she got pumped full of steroids until she stabilised. It was the most terrifying moment, I thought we were going to lose her but thankfully, everything was all right in the end. I was struggling but I put it down to work stress and hormones after all, everybody gets tired and acheyand I was on my feet all day in heels! 

Age 27, I finally broke. I was signed off work with exhaustion and Mum took me to the local GP and for the first time in my life, instead of swabbing or prodding, the Doctor LOOKED. She looked up inside at the entrance to my vagina and she called for a second opinion. Ulcers. Not like herpes. Severe, bleeding Ulcers, all along the inside and on my Cervix. She said she could see evidence of healed ulcers and scarring. I cried because I knew exactly what it meant. There are few conditions that present themselves this way and before she even asked if I knew what autoimmune conditions were, I'd crumbled. Mum was in bits. 

I left there with steroids and a referral to St Thomas' and a broken heart. I know my Mum blames herself but I keep telling her she shouldn't, it's not like she did anything to cause it. They say that a number of things can trigger Lupus - puberty, childbirth, trauma. I'm not a medical professional but I'd say bleeding, almost to death (twice), counts as trauma. My Dad told me that I should never let Lupus stop me from doing what I wanted to do, I should never let it hold me back. I'm stubborn as hell so I insisted I go back to work. It's been hard, and a long story short I ended up working myself doubly hard to make up for it. I never told people what it was exactly that the problem was. I know first hand that people treat me differently when they know. I've worked with colds, flu, laryngitis - anything people might take a day or two off work for, I was there. To prove I could. But to who exactly? Who am I proving this to? 

Me and my Gorgeous Mum, 4 years ago (she hate's these photo's but I love them!)

This was all in October last year, a Lupus Flare. I was signed off work, referred to a Time to Talk because my depression was scarily taking over. Some of the thoughts in my head, the dark places I went to - that sometimes I still go to - They're hard to come back from. I'm trying new medication at the moment, I need to stop taking steroids if I ever want to try and have a baby (which I would love to do!). I recently had a cystoscopy which revealed evidence of chronic inflammation across my bladder which now need to be monitored. Obviously, as my Granny died from complications with her Kidneys, anything to do with my waterworks worries me. I'm finally on a road to recovery but the fatigue at the moment is just awful. I just have to ride the storm and stay strong. Apparently, it's a family trait.

I'm lucky to have so many things in my life. Mum, Dad my brother Adam. I have a great best friend, Sarah, a great Uni bestie, Claire and I have a boyfriend, Matt who is just wonderful. He copes really well with all the Lupus things. I know he worries and he's scared but he sticks by me. I like to think he's in it from the long haul. He calls me 'Little Spoon' because I find that he can cuddle me this way even when I hurt. I find it cute but also funny because I use 'Spoon Theory' as a way to measure my days. Every task requires a certain amount of spoons but you only start the day with a limited amount. To find out more about Spoon Theory click here.

Matt and a Spoon!

For Valentines day this year, Matt bought me a necklace. I'd been saying for ages I wanted something to wear everyday and when I opened the box, I cried. 'A little spoon for my little spoon', so I never run out of Spoons. This great necklace is from Lily Charmed and I love it. The necklace is beautifully made, easy to wear and it goes with everything. The quality of craftsmanship is amazing and I really think they're the perfect gift, especially as the Spoon is so significant. I've had so many compliment's about it!

I'd like to add more Spoons, a Gold one, in memory of my Granny and the Matte Finish Silver, For my Mum. Then I'd always have 3 Spoon's left, not matter how hard my day, no matter how many activities I had to do! 

My Spoon, Modelled by the Lovely Jess of Ruby Ruth Dolls.

My Spoon

This year, for World Lupus Day (May 10th), Lily Charmed are donating 20% of the sale price on their Spoon and Butterfly necklaces to Lupus UK.

Lupus UK Charity Necklace

Please, if you know somebody with Lupus, a spoon necklace would probably mean the world to them. It's the little details, like knowing about Spoon Theory, that make our day's a little more tolerable. A little understanding goes a long way. You can visit the Lily Charmed website here! You can always buy the little spoon on it's own for an existing charm bracelet or necklace. 

The hardest part about living with this illness is that it can't be seen. I don't just have Lupus. I have Fibromyalgia, Depression, Raynauds, Nerve Problems and I suffer with Anxiety. Some days I have needed a walking stick. You can't really see any of this unless you know me well enough to see the pain in my eyes and ignore the smile on my face and the same can be said for thousands of other Lupus sufferers. I have a Lupus Pinterest board to help me create a visual idea of what it's like to have autoimmune conditions so people have something to see.

For more information on what Lupus actually is you can visit the Lupus UK website. 

Mum and I are both treated and monitored by the wonderful team at St Thomas' Lupus Trust in London and we consider ourselves very lucky to be looked after by people who know what our condition is because it really is hard to find experienced doctor's with this condition. My Lupus is now stable and under control through medication,  much like any other condition. I need to make some lifestyle changes but who doesn't these days?! I've thought a lot about how to live my life with Lupus rather than letting the Lupus take over and I'm really positive about the future. This condition is all about management.  Managing time, medication,  work,  diet.  Luckily, I'm an excellent manager! 

So there you have it, I, unusually, am from a 3 generation Lupus family. My Granny, My Mum and Me. As I'm sure you've gathered by now, Lupus is not what I consider the family trait to be. I am from a family of strong women, for many years I have considered myself weak, a failure. Like I let everyone down. When I look at my past and see where I am now, I realise I've been strong all along. 

Lupies!