Hey guys and gals!
Happy Hump Day! I just want to say a massive thank you to everyone who took the time to read my first post and the incredible feedback I received. Totally overwhelming and reassuring to know so many people are supporting me and are willing to learn about these crazy illnesses that are becoming more and more frequently diagnosed in people today.
Ironically, I am sat in bed writing the post as I have fallen ill with my yearly sinus infection (BOO!) but it is what it is! This post is going to be about the lead up to being diagnosed. I won’t be leaving any of the gory details out so if you’re a bit squeamish, you have been warned!
6 months to diagnosis – Are you kidding me?
I took up pole dancing around February 2015. I’ve danced since I could walk so have always been fairly fit and flexible, and took to pole like a duck to water (although not so much the bruises and pain that comes with it, such a baby!). Like with any sport, it is natural to get injuries, and around the beginning of August, I pulled my groin. Ouch. That sh*t hurts. I took a month out to let my body heal and decided to go back mid September, having to regain all the strength and pain threshold that I had lost. I poled until about end of October and ended up with a hairline fracture in my wrist and thought maybe I should just give my body one big rest as the job I did at the time could be quite physical, so I stopped poling until the new year.
Fast forward to Christmas! The most wonderful time of the year! I had managed to escape the office without getting the cold that had been making it’s way round and I couldn’t wait for some time off to spend with family and drink lots of fizzy wine and eat my body weight in chocolate and Christmas dinner and do sweet F all for a week and party down for Boxing Day and New Years! First day of the holidays, I woke up with the most horrendous case of what I thought was flu. My stepdad was also suffering too. Collectively, we both had every single symptom under the cold winter sun. He had the sniffles and bad throat, I had the achy body. I couldn’t even stand up straight that’s how much pain I was in. My wrists, knees, back, shoulders, I felt like a 22 year old trapped in an 80 year old’s body. My feet and hands were also a little swollen, like there were water bubbles trapped underneath my skin, and sometimes I couldn’t even manage to lift things by myself. Of all the bloody time I had to be ill, my body had to choose when I finally had some time to enjoy myself. Boo, hiss! I had to cancel my Boxing Day rave I had planned in Manchester, which ended up with me and a pal I’d met that summer falling out and never speaking again, I was gutted. But I knew I just had to sit this one out.
The aches carried on throughout the whole of the Christmas holidays, some days I couldn’t even get out of bed! I had to just lie there, being waited on by everyone, it was miserable. I even adjusted the way I slept to see if that would stop waking up feeling so achy, sometimes it worked, most the time it didn’t.
New Years Eve
New Years Ever crept around, and once again me and some pals were off to Manchester, I had woken up with a little pain, but I was not letting it stop me. I’d had to cancel the rest of my Christmas, I had to allow myself at least one party night! So off we set, to the Manchester Warehouse Project, me and 4 friends, getting tipsy on the train then onto the hotel to get ready. I had phoned everyone up as I knew if I was going to be in an underground car park raving, there probably wouldn’t be much signal let alone anyone being able to hear me. We’d been in there an hour when my left shoulder dully started to ache. I thought please you have got to be kidding me, not tonight… It got to a stage so bad that I almost had a panic attack and dragged my friends out into the smoking area and told them of the pain I was in and begged them not to try lift my arm up as I was just in too much pain.The night carried on into the very early hours, the rave shutdown, we headed back to the hotel. It was here at 6am, I noticed that my left hand had swollen up, except this time, it wasn’t a little bump, it was the size of half an egg on the back of my hand. Totally freaked out, I started looking on the web when was the earliest train I could back. I wanted to go home. I wanted my mum. Me and one of the friends I was with, James decided to get the 8.30 train back home. I should’ve probably gone to hospital but with no sleep and it being New Years Day so the A&E room would probably be rammed, I decided to stay home and try and sleep it off.
Between the next 3 months, I had various hospital trips and doctors appointments, I attended physio for my still aching shoulders, back and sides,, did urine tests to see if I had water infections, given antibiotics and Naproxen to help with the pains, nothing was easing up, but with the crazy lifestyle I had, I didn’t have TIME to look further into what could possibly wrong, so I carried on as per normal!
3 months to diagnosis – The Great Snooze.
Those who know me well, will know I have always been a big sleeper. I love my sleep. I still do! From teenage years, I could quite happily sleep 10-12 hours a night, or wake up late in the day, or snooze through my afternoons and evenings and still sleep through the night, especially if I had been out the night before. Sometimes when I had been partying down, I wouldn’t even move from my pit the next day unless I needed a bathroom trip or food and drink. So when you’ve been a big snoozer all your life, you wouldn’t pay much attention to unusual fatigue. Like coming home to your boyfriend’s after work and sleeping straight through the rest of your evening, waking up for dinner, then going back to sleep. Poor Thomas, he’d practically picked a sloth for a girlfriend! It wasn’t until one night, I was doing my usual sleep trick, when I bolted upright in searing pain in my tummy on the right hand side. I mean so much pain that I couldn’t even scream or gasp for air. As soon as I doubled over, it spread round to my back. Trying to catch my breathe and to find someway to make the pain stop, I laid there, twitching in his bed, trying to get as comfortable as possible, tears streaming. Tom didn’t really know what to do, poor guy, but to just try and comfort me as much as possible and feed me sips of water. All I could possible try and describe the pain as (ladies, sorry lads, you’ll have to imagine) is think of the worst possible periods cramps. Now times that by a thousand. Yeah, not great. Still, I couldn’t bring myself to go to the doctors.Those who also know me well, will know I love my rose wine. So throughout this whole entire time, I still had the occasional glass with dinner or in bed, especially on the weekends!
2 months to diagnosis – SNOWBOMBING!
In November 2015, I had signed up to a trip called Snowbombing 2016. It’s a festival in Austria where you can go ski during the day, and party all night. My friend had been going year after year, and had finally convinced me to spend a small fortune on the week party, and I couldn’t wait!
It was round about the week before, I was still feeling rundown, I had been taken to see Billy Elliott the Show on the West End for my birthday which was fabulous, but I still ached. The next week, I was at home, I went to the bathroom, and my urine came out purple. not like a little purple tinge to it, I mean like blackcurrant cordial, which I had been drinking throughout the day but I thought, Hmm, that ain’t right. So off to A&E I went to have YET another urine test done. after however many hours wait, I got seen by a doctor. He did the test, asked how I was feeling, checked my back and front where I said I’d been having pains, I explained about the hands swelling, I just thought, maybe its a really bad kidney infection. But the doctor said no, there was nothing showing in my urine to indicate kidneys *sigh of relief* and that I would need a blood test done, but he reckons due to the pain I had been having, that I may possibly showing signs of Rheumatoid Arthritis. What the…. I thought I’m 23 years old, how on earth could I have arthritis at such a young age?! Anyway, he gave me antibiotics and naproxen for my oddly coloured urine and pains, and I decided once back from my Snowbombing trip, I’d have the blood test done, just in case it was something scary. The antibiotics did help clear up some of the infection, but my urine was still an off colour and odd smell (sorry, gross I know).
In hindsight, Snowbombing was kind of like “the last party” for me. Little did I know how much my life was going to change when I got back. I almost cancelled my place due to how unwell I was feeling but knowing I paid all that money and to not get a single bit back, I was going. Whether my body liked it or not. It was mad, It was crazy. I met some cool people, made some Canadian friends who I still keep up with now. I skiied little as I was so tired from partying and drinking all night that I couldn’t face going up the slopes. There were moments where I became short tempered as I had a lot going on back home and the fatigue was taking over, and I become very irritable when tired. Snowbombing was probably the last time I really felt like myself and let go and forgot about everything for a little while, but I was glad to come home. I had been homesick. I missed my family. I missed my boyfriend. I hadn’t eaten properly for a week and lord knows how much weight I lost. It was time to take that blood test.
1 month to diagnosis – Referral.
I eventually went to see my GP, the wonderful Dr. Moore. I explained everything, with my mum sat right next to me to help prompt me if need be. The aches, the pains, the urine, the nosebleeds (forgot to mention, between September to diagnosis, I had a hell of a lot of nosebleeds. Big ones that came on in work, whilst sleeping, whenever, so inconvenient.), the sleeping, the swelling, the emotions of being up one minute and down the next, anything I could think of. I explained that whenever I seemed to eat any of what I call “white foods” like dairy, bread, rice, I’d get griping tummy pains and would struggle to pass stool, my appetite had gone. The doctor knew something wasn’t 100%, and so, I was booked in for my blood test.
I’d only ever had one blood test done before. My stepdad came with me to make sure I was okay, I couldn’t even watch her do it, and made sure she spoke to me the whole time to distract me. It went fine until I got to work, I was shaking, had fever, felt like I was going to be sick, it was horrendous. Nowadays, blood tests are so frequent I do actually watch the blood come out of my arm into the little pot. It’s pretty weirdly fascinating, don’t know what I was so scared of!
I was hoping when Dr. Moore got back to me that nothing showed on my tests and it would just be a bad case of IBS and I would need to look into things that maybe upset my stomach, no such luck. Everything was fine apart from my liver levels which looked very peculiar, so peculiar in fact he rang me up and said I am being referred to the hospital and need to go right away. I was in a little shock, but put on a brave face and told my manager that I needed to go to hospital. My manager and other team member were both very understandable and told me they hoped it was nothing serious and that they’d wait to hear if I’d be coming in the next day.
Well lets just say the hospital was a bit of a wasted trip. I waited to be seen, had the exact same bloods and tests my GP had done, waited a bit longer for results, only to be told, again I need to be referred. I was made to feel like an alcoholic or some sort of drug abuser as I was asked “do you drink? How much and how often do you drink? Would you say you consume more than 14 units of alcohol in one go? Have you been anywhere exotic recently? Where did you get that tattoo?” to which I just said I am your average 23 year old that tries to eat well, exercises regularly, has a few drinks at the weekend, but I’m not an excessive drinker, no. In the past couple of years I have been to Ibiza and Austria and I got my tattoo in the UK. Oh well, we need to refer you to a specialist. Well, that’s why I’m here? Cut a long story short, I got the name of the doctor I needed to see and ended up going private.
2 weeks to diagnosis – I have what?
We met with the Dr at the private health clinic, he did the usual tests, asked the usual questions, I felt by this point I had repeated myself a 1000 times over and just wanted some answers by this point. He had all my previous test results and it was here that I heard for the first time why I had been asked so many alcohol related questions.
“By what your results are showing, I am 99% sure you have Autoimmune Hepatitis”………..
Reverse that a second.
Autoimmune Hepatitis? How the? What in… WHAT DOES THAT EVEN MEAN!!!
The doctor started talking and I could hear what he was saying, every single word. It felt like a death sentence. I kept a straight face as I heard the words “chronic condition” and “inflammation of the liver” “immune system attacking the liver for no reason” and “there is no cure”. I was trying to think of questions of how this might affect my life but all I could do was nod my head and say okay. First off I would need an ultrasound to rule out gall bladder and to see if my liver was damaged, which they did on the day, and then I would need a liver biopsy to make 100% sure it was AIH. That in 2-5 years we could have it under control, over 5 years we’d have to look at more long term medication but because I was young and healthy he reckons 2-3 years and it would be manageable.
Then came the so how do we treat this then. “You’ll be started off on steroids to try and make your liver better, and then eventually you’ll move onto suppressants to try and stop your immune system from attacking”. My reply? “But don’t steroids make you fat?”. We all kind of laughed at this nervously and the doctor told me I may not react in that kind of way and yes they do come with side effects but hopefully you won’t be on them long enough to see them (I’ll do a whole separate post on preds another day). With that, my next question, as I was wary of losing my slim size 8 dancers figure that not only had I a been naturally gifted with, but I also didn’t want to lose all the muscle I had built from pole and dance to give me my leanness… “Do I need to change my diet?” – “No, but you have to stop drinking alcohol”. Stop drinking alcohol?! ARE YOU MAD? How are you going to tell a 23 year old party girl they need to stop drinking? It’s like my talent? Jheeze. But if there is one thing I have learnt very recently, it’s when the doctor says stop drinking, he means, stop drinking. (That’ll come in another post too).
So I finally had (kind of) my long awaited answer. Autoimmune Hepatitis. I had no idea what it meant, what it held for my future, or if I definitely had it. But I had a starting point, I had some drugs, it was time to start researching and making my road to recovery. I still hadn’t wrapped my head round the fact that I had a chronic illness that affected my liver. I mean, who on earths body is stupid enough to attack itself? Oh yeah, that’s right, mine. Was this my body’s way of telling me I need to slow down? Possibly!
I have been lucky that for most of my life, I have never needed any sort of treatment or operations, never have I broken anything, or needed something removed, I’ve just been really damn lucky. I’m not even an ill person, so I guess I can see AIH as getting the full whack in one go. For those of you who haven’t had or heard of a biopsy, it’s where they make a small incision and take a piece of whatever they may need out for testing. Sounds like fun, right? I thought I’d get put under for them to have a poke around and wake up with some bad ass scar that I could make up some cool story to, none of those things happened, not even the scar. I dressed for surgery, I walked into the radiographers room, very apprehensive as I wasn’t allowed anyone else apart from the nurses and radiographer in there with me. The radiographer, a very well spoken gentleman who looked so laid back, explained to me what was going to happen and that it would be over in about 15 minutes. 15 minutes to slice me open, cut out some of my liver and sew me back up? Fab! I’ll be home in time for tea! I laid down on the table and the two nurses kept me chatting as they could see I was nervous, they stuck one of those needle things in my hand in case I reacted badly and needed emergency medication, that was really annoying and hurt a lot. The radiographer showed me the noise I would hear when he was snipping some of my liver out (kind of like a toy gun click) and asked me to hold my breathe as and when he asked as he didn’t want to accidentally slice my liver and I start internally bleeding (talk about pressure, right?!). This was the first time I remember truly being scared about my future as I spoke to the lovely nurses, who held my hand, and wiped my tears as I explained the doctor thought I had AIH and they told me about how brave I was being. I was ever so grateful for their presence. The gentleman put the local anaesthetic into my ribs, which hurt like hell may I add, the worst part by far, eventually it all went numb. I held my breathe, the gentleman clicked, this happened a few times, I felt a little blood running down my back as he did so, but apart from that, I couldn’t see or feel a single thing he was doing. I didn’t even get to see my liver bits at the end! Anyway, he glued my side back together and cleaned me up and said I could sit up slowly, it was all over in a matter of minutes. I could now go to my bed where I needed to stay for the next 6 hours to have an eye kept on me (yawn). I almost battled with the radiographer whether I could walk to my bed or have to be wheeled in a wheelchair. The latter happened. I felt very embarrassed. I’m quite a proud person and felt very silly but complied with the radiographers wishes.
The nurses left me to get comfy on my side and for the next few hours I lay there whilst nurses came and took my signs to make sure I wasn’t bleeding from the inside or reacting badly. I had visitors come into see me, even the original two nurses in the biopsy came to see how I was doing, I was very appreciative of them, although I did get tired and irritable and eventually wanted to be left to sleep. After a few more hours, I could finally go home to rest, huzzah! I started my medication on the steroids this day as well… 10 tablets a day I started off on and 2 vitamin D tablets… 12 in total, felt like a right addict!
But anyway, I was on my way to being officially diagnosed, and the worst was over, pre-diagnosis anyway.
That’s all folks for today’s blog, next I shall be writing about my official diagnosis, what AIH is, what it means, and how a little research started to help me find other ways of healing instead of just taking medication.
Peace and Love!