<<< This is me, Stacey. (On a good day) I look a lot different on my bad days (You know, Pjs on, hair tied back, no makeup, hot water bottle in bed sort of days)

 

Here's a little about me. Okay, I lied, there's probably going to be.
I'm in my twenties,  and I'm mother to three lovely (pain in the arse) boys, who I love and adore. 
I'm an aspiring author, illustrator,  and artist. In my spare time I love to write and draw, and I'm about to start a degree in creative writing and illustration (with a distance learning arts university) 

 

I've recently gotten a little freedom back since my youngest son started school. This is the part where most mum's throw a little party and get back to work, or do whatever it is they're wanting to do. But not for me.

So, here is my story:

​

It all started after I had my first son. Although I had always had really heavy, horrendously painful periods, I thought it was normal, and in my young teens I was too embarrassed to talk to anyone about it. When I was 18, I began having pelvic pain, almost constantly, which at first, the Dr told me 'You've just had a baby, it takes a year for everything to settle down'. So, I trusted that opinion and went on my way. I suffered a miscarriage before my second successful pregnancy, which during the time I was diagnosed with Symphysis pubis dysfunction - which basically meant my pelvis wasn't moving correctly, which caused me even more pain than I had when I wasn't pregnant.

​

I suffered a second miscarriage before my third successful pregnancy. I was again diagnosed with SPD, so badly this time I was on crutches during the last three months of the pregnancy. The good news was, SPD was something that only happened in pregnancy, and would go away as soon as the baby was born (so I was told) but for me, the pelvic pain didn't stop. It got to a point where some days I was crying, I couldn't move, and it literally felt like I was having contractions. This continued for months, and as well as the pain outside of my periods, my periods were even worse, heavier and longer lasting than usual. I began experiencing the fatigue, migraines, and the pain from my pelvic and lower back began to spread down into my thighs. I went to the Doctors' on numerous occasions, and I kept getting told the same thing 'You're a mother, that's why you're tired, that's why you're in pain, or you're depressed - take these tablets and off you go.

​

It took almost a year after my third birth for a Dr to refer me to a gynaecologist, who immediately suggested I have a keyhole surgery. They found cysts on my ovaries, endometriosis, and adhesion's (which were causing my ovaries to stick on my womb.) Finally, I had an answer to  my constant pain, but I'd never heard of endometriosis before. I initially thought, well, great, the surgeon has removed this endo stuff and now I'm okay.....Then I was told it's incurable. The only relief I was going to get was lots of pain medication, and if I wanted, more surgeries for them to burn out the endo, which unfortunately, even if I continued to have surgeries, the endometriosis grows back.

​

So, I basically just got on with it the best I could. I couldn't walk for more than 15 minutes without the pain starting. I found myself housebound with meds and heat patches most of the time.
It continued on like this, until, surprisingly to myself and my partner, because I had been told with endometriosis, and cysts on my ovaries, it was highly unlikely I'd get pregnant again. Yep. You guessed it - I was. At 20 weeks pregnant, I woke one morning to notice my little bump had completely disappeared. My stomach was flat. Worried, I went straight to the hospital, and when they did a scan, I was told they couldn't find a heartbeat, and my baby had died in my womb. I gave birth to my sleeping angel, Noah. It was the worst experience of my life, and something I will never forget.

 

I went on as normally as I could. My pain got progressively worse, and it began spreading all over my body. Sometimes, I couldn't touch my skin without it feeling like I'd had severe sunburn. My whole body felt like one big bruise, and I began to struggle to get out of bed in the mornings. I would either sleep too much, or not at all. My partner had to do (and still does) everything in the morning, from getting himself ready for work and getting the boys ready for school. The fatigue is horrendous. I honestly don't think I could describe it - it's like I could sleep for hours and hours, and wake feeling like I haven't slept for days, and I'd have no energy at all.

 

And, again ,it took another year for a Dr to take my pain serious. The Dr was reading over my file and had asked me if I had a certain blood screening done, that the hospital should have given me a year prior, because I had suffered two miscarriages and a stillbirth. I said no, and she did the blood test there and then. I had no idea what it was for, but I got a call from the GP to come in after the blood test. (I was petrified.) She told me I had tested positive for something called Lupus Anticoagulant, also known as Hughes syndrome. She told me I would have the screening two more times over a period of a few months, because sometimes the tests show up a false positive. The following two tests came back positive, so I was then referred to a rheumatologist, who diagnosed me with fibromyalgia  and antiphospholipid syndrome. (I won't go into details of these now or this will get even longer, but I'll do a post on each)

 

I had a full antibody blood screening and further tests, and eventually (after two more appointments at the rheumatologists) was diagnosed with Lupus. Having all these chronic illnesses is shattering. I'm in pain every day. People look at me and think I'm okay. But i'm far from it. It's really, really hard to get up every day and try to act like a normal person. I hate walking down the street, trying to walk as normally as possible when it feels like my stomach is being twisted, my whole body throbbing, patches of my skin with numbness, sharp, shooting pains attacking my limbs, and zero energy. Honestly, everywhere hurts. These illnesses have a huge impact on my life and my family, and on other peoples lives, too, and that's why Claire and I wanted to start this blog, to talk about illnesses that most people have never heard of, to spread awareness and get people talking more about chronic, invisible illnesses.

Thanks for reading my story, and for joining us on our journey.

Love, Stacey.

​

​

​

​

​

​

​