My second outpatient appointment

My Mum sat with me until I felt asleep in the early hours of the morning, although I did not really feel asleep. I didn’t like worrying her again. Although this time I was worried too. We almost slept in through my early morning appointment as the exhaustion had taken over, but somehow managed to make it just in time. I went in for my blood test and had to reassure the nurse about my bruise again. It was hard for her not to show her sympathy for me. I didn’t want it. Continue reading

My first outpatient appointment

The morning of the appointment came, and my dad took another day off work to come to the hospital with me. I didn’t like the amount of time my parents were taking off work. I’m big enough, and old enough to take care of myself, I thought. And I didn’t want them getting in any trouble because of me, but it made them happy to look after me, so I let them. We got to the hospital just in time and as soon as I sat down my name was called to step on the dreaded scales. I’d gained another 3lbs. 8lbs in 8 days. I tried to hide my disappointment as I trudged back to take a seat next to my dad. My once healthy BMI was now considered as overweight. Marvellous. After waiting a few minutes the nurse called me in to have my blood taken and again my dad waited in the waiting room buried in a magazine about cars. I couldn’t help making a prejudice joke about the male species. The nurse was friendly and quickly picked up on my excitement to get my results, she was chirpy and optimistic for me too although could not help commenting on my peach sized purple bruise she had to take blood from. I reassured her it didn’t hurt and not to worry. I didn’t hurt much really. I returned to the waiting room and waiting to be called again. 15 minutes passed and we were offered a drink while we waited. You really were well looked after here. When we were called in I sat down patiently, trying to read Dr Whittle’s body language. She was tall, blonde, and very pretty and had European accent I couldn’t quite place. I’d taken a liking to her from the start, and without pushing any professional boundaries, I could tell the feeling was reciprocated. 31 platelets.I was ecstatic! Dr Whittle didn’t seem quite as happy about the very slow progression; you could tell she was hoping for a higher count, although slow and steady was better than nothing. I was allowed to drive again, and go back to work on a part time basis. Things were really beginning to look up again! Ecstatic!

By the time we got to my nans to pick up my confiscated car, my mum had just finished work and joined us. We decided to go for a celebratory lunch; my Nan and Granddad accompanied us. Everyone was in high spirits and it was lovely that no one seemed to be worrying as much. I rang work, far too eager to tell them the good news and get back there. I ended up covering a 5 hour shift that night and the following night. I didn’t want to tell my parents, but work wasn’t quite as easy as I thought it was going to be. My steroids made it incredibly hard to focus and my concept of time seemed to have disappeared alongside my spacial awareness. But I was just so glad to be back tonormality. Even with the customers looking at me and my bruises like I had turned into some form of drug addict over the last week, I washappy.

I was on the rota for part time hours over the following week and tried to spend some time with my friends, getting out of the house on my days off. All of my girlfriends got together and went to Bingo on the Sunday. It was nice to all be together in one place rather! Granted, we didn’t win Bingo. I worked the Monday and everything went smoothly. I took extra care not do anything clumsy and actually succeeded. On Tuesday, Rachel went into false labour so we spend the day giddy with excitement trying to distract ourselves with things to do before she had to go into hospital. Wednesday we were both exhausted from the excitement of the day before and it was obvious that the labour was false so we both just stayed home watching films. Thursday I went back to work, it was a smooth and easy day but I could tell something was not right. I had a few more red dots again. Almost all of them had cleared up in my time at hospital. When I got home I had a nose bleed.  I didn’t sleep that night. I was back at the hospital the next morning for my blood test and appointment. I was full of anxiety. I knewsomething was not right and dreaded my appointment for validation. I was back to my normal life almost, happy. I didn’t want to go back to being ill again.

Realisation

On Tuesday the realisation began to sink in. I had been under the impression that once my platelets were back to normal then so would I. But I hadn’t researched the disorder enough or asked enough questions. Acute ITP is normally present in children and is treated in 6-8 weeks. Despite there being many different causes and treatments, acute ITP does not normally reoccur after the platelets have returned to a normal count. Chronic ITP is very similar to Acute ITP, although is present it adults. However, an adult must have ITP for a year before their condition is Chronic. In adults, once the platelets have returned to a normal count it is normal for them to drop again in the future. There is not much research into the cause of ITP; it is just simply linked to bone marrow and blood disorders that affect a person’s immune system.  ITP is something that could affect me for the rest of my life. I do not know how long I will suffer from it.  I do not know how to feel about it. There is no way to fully understand it. It is a waiting game, to see how many body functions and reacts. There is nothing I can really do.

As the realisation started to sink in I immediately started to look at the negatives. I was hoping to have a year full of accomplishments. Now goals like joining a gym and losing weight seems almost impossible. With the risk of injury and an internal bleed it will be a long time that I can do any strenuous exercise. The steroids were already making me pile on weight. And that was something I was just going to have to accept.  At 20 years old, I was worried to do anything that may cause me injury in case I bled to death. I had to accept that I would put on weight and feel uncomfortable next to all of my beautiful, slim and healthy friends. Even thinking about a glamour shoot or a girly holiday in a bikini made me feel uncomfortable and insecure. I didn’t know how long I was going to be off work, although knew I could not continue to work where I currently was because of the injury risk. What jobs could I do? I hadn’t heard back from my interview. Could I live off sick pay? I had an overdraft to pay off? A car. A holiday fund would defiantly be out of the window even if I did pluck up the courage to squeeze into a bikini.

Worrying about all of these things just made me feel guilty and selfish. There were people in that hospital that know they will never get better; People who are terminal. People who have limited time left: they will probably be in pain, feel unhealthy and find it hard to enjoy their remaining time on this Earth. That was when I decided I will not let ITP ruin me. It is simply a minor setback that I will not let control me and my life. Sure I will have days where life will just not be fair, and plenty of days back in hospital. But I will always be able to come back home healthy. So rather than looking at the negatives, I was going to look at the positives of ITP. I had stopped smoking. Goal number 2 accomplished! Since walking into that hospital I had not had one cigarette. Since coming home, I occasionally smoked an E-cig. But I had been smoke-free for almost a week now. Plus, the steroids were working. There was nothing to suggest my ITP would ever come back!

I planned on changing my diet dramatically to try and balance out my weight gain. Although I would not be able to do much exercise at that moment in time, I could adapt me diet to make it much healthier and lower in fat. Once I did start coming off my steroids I would lose loads of weight without spending money at the gym! Instead, that money can go towards my overdraft and possibly a holiday when I was a little more comfortable and healthier. I was lucky that I did not already have a career that I loved, enjoyed and would have to abandon because of the ITP. I could still become a counselor with this disorder. And who knows, my ITP may never come back. Time will tell, and let’s be honest. I am lucky to have time.

The passing 4 days waiting for my next appointment on Friday 23rd were long and boring. Now I was home it was easy to recognise the side effects of my steroids. I was continuously hungry and nothing seemed to suppress my appetite. It felt like my stomach had tripled in size, and there was no point I felt truly full. Sticking to a healthier diet seemed impossible, so I decided to wait until my next appointment before making any drastic changes. I still wasn’t sleeping properly. I was so exhausted, but my mind wouldn’t let me switch off. I tossed and turned in some weird state of a trance until it was late enough to get out of bed in the mornings. Everyone was worrying about me and I didn’t like that. There was no need to worry. I was fine. I was on medication, and getting better: worrying was not going to help anyone. I didn’t like that I was causing unnecessary stress to people. I was not worried. It was safe to say everyone else was worrying for me. So I tried to stay ridiculously optimistic and care free in the hope that it would start to rub off on my nearest and dearest. My friend Rosie came to visit me while I was house bound which was lovely. It was great to see her and really helped bring me back down to reality. I couldn’t stress how brilliant and supportive all my friends and family had been even with their worry! Me and my family placed our bets. I would be happy if my platelet count was at 16. It seemed like a realistic target. My family were more optimistic than I was (good to see my optimism was rubbing off on them): my Mum guessed 18, and my Dad 60!

Hospital Life

On Sunday I was moved out of my side room and onto a Bay (Bay 1, bed 3). It was then I become to realise that whatever ‘illness’ I had was serious. Tucked away in my little room I had somehow managed to convince myself that I wasn’t really in hospital, and liked to think of it as a hotel. I shared my new bay with an elderly lady called Brenda, diagnosed with leukaemia. I couldn’t help but let the realisation sink in. I had put on 5lbs in 4 days due to my steroids. I was the youngest on the ward by a long shot, and many of the elderly patients had been diagnosed with Cancers and when discharged were heading to a hospice to live the rest of their few remaining weeks/months in comfort and care. I began researching ITP.

Idiopathic Thrombocytopenic Purpura (ITP) is a disorder in which the immune system destroys platelets, which can lead to easy or excessive bruising or bleeding. My condition was currently considered as life threatening. It was so hard to come to terms with, I honestly felt fine. I tried not to look too much into it, and hoped the medication would work soon. Faster.  I didn’t like the idea of a blood transfusion, I felt fine and it all seemed far too serious and unnecessary in retrospect to how I felt. On Sunday, Sam and Anne joined Carol, Jim, Betty and Bob. Six. I laughed telling my friends the next two platelets would be named after them; Rachel who was heavily pregnant and her partner Tom, they had had no problem reproducing after all. I was happy my platelets were going up, but I couldn’t help becoming disappointed. Today was Rachel’s baby shower. Something I promised I would be there for. I felt like I had let her down. My little room of privacy and security had been taken away from me, and now more than ever I felt like I needed it. When my mum came to visit me I couldn’t help but cry in her arms. I felt safe in her arms, like the prying eyes of the people around me could not see me.

Monday arrived and I was feeling very pessimistic about going home anytime soon. I knew my platelets were not rising as fast as the doctors wanted. Regardless of this and to my surprise, Monday 19th January 2015, I was discharged. My platelets had risen to 8 and the doctors decided I was making good enough progress to return home with a bag full of pills and firm direction to become a ‘couch potato’ until my hospital appointment on Friday 23rd January. I was so relieved and excited to get home and get a real night’s sleep. It was difficult sleeping in the hospital, with continuous observations and beeping from nearby drips or alarms. The sound of the drips reminded me of my favourite film, ‘The Hunger Games’; When a aid parachute came to land in the arena it chimed a high pitched bell, almost identical to the sound of the drip. It was ironic again, but I tried to ignore it. I couldn’t ignore my emotions when the alarms went off, followed by a stampede of feet rushing in the same direction. The idea that someone needed help, emergency help, not far from where I was made me feel helpless.Undeserving almost. I wasn’t ill enough to be here. Despite my diagnosis, I felt like I was wasting the doctors time, the hospitals resources, and the bed I lied in could be given to someone who really needed it. I really was relieved to be home! Although, my body refused to let me believe I was home, and I woke up frequently expecting to have an observation from a friendly nurse. Being home was bizarre. It was hard enough to convince myself that I was poorly in hospital, never mind in the comfort of my own home.

The diagnosis

On Thursday 15th January 2015, I went to the doctors and got sent to the Acute Medical Unit at the York District Hospital. I went with my heavily pregnant best friend, Rachel, rather than my mum because I could see the worry in her face every time she looked at me. It got Rachel out of the house too, since she had started maternity leave she was bored continuously and jumped at any opportunity to get out of the house. I felt fine. Healthy. I got seen very quickly and was admitted within an hour of arriving. By 1.30pm, I was given a bed and had my first set of bloods taken for my blood count. I had been told that I most likely had a condition where my platelets, (which I called ‘palettes’for at least 24 hours) were very low, causing me to bleed and bruise easily. My mum and dad were very persistent to get to the hospital and arrived at about 3.30pm. By 5pm, I had my results and was moved onto the Coronary Care Unit, Ward 31, bed 16. A small side room with an en-suite, free TV and flexible visiting hours. I had lots of questions and when the doctor came to visit me I was extremely happy my mum and dad were there with me. I was eager and apprehensive, but everything was all happening very quickly.  I didn’t really have time for the realization of where I was, and what was going on to sink in.

Anyone diagnosed with ITP will know that a healthy platelet count is between 150,000 to 400,000 (or 150-400). Mine was 2,000 (or 2), which honestly meant very little to me. I was prescribed steroids to take daily, alongside some tablets called ‘tranexamic acid’ and ‘lansoprazole’ to prevent internal bleeds and stomach ulcers. The next 4 mornings promised a joyful breakfast of 19 mouthwatering tablets and a blood test. On Friday my platelets had not made any progress, just carol and jim swimming round on their own. On Saturday they had managed to reproduce, and Betty and Bob joined them. Four. However the doctors started throwing round suggestions of giving me a platelet transfusion. In the end we decided to wait and the doctor told me that if the following day my platelets had risen to 10 then I would be discharged. I really wanted to go home and get back to normality. Everything seemed surreal and I couldn’t focus on one thing for too long. My family and friends (Rosie, Rob, my boss’s wife Ireena, Danii my work colleague and friend, and Rachel) visited regularly, but the wait between visits was agonizing. I was just happy to have my own little room, away from curious, glaring eyes. A room where I felt comfortable.

The day my life changed…

IMG_1628Tuesday 13th January 2015. It was just a normal day working as an assistant Manager of a Fish and Chip Shop. Slaving away behind the fryer; cooking tea for the locals. The New Year had brought new aims, goals and expectations into my life. By the end of 2015 I wanted to;

  1. Join a gym (AND ATTEND);
  2. Stop smoking;
  3. Have a glamour shoot and work on a portfolio;
  4. Have a holiday with the girls and another with Rob;
  5. Pay off my whole one years’ worth of overdraft I had managed to spend at Northumbria University doing a course that I didn’t enjoy;
  6. Get a new job.
  7. Decide on a Career path

 I had gone to University to study Primary School Education, and although I had loved the city, culture and student life, I hated the course. So after completing the first year, I decided not to waste any more years of my student finance and move back home. I got a full time job, a new car and settled into working life well. Although when 2014 finally came to an end, I quickly realised I had wasted a year accomplishing nothing. 2015 was going to be a year to accomplish things and on Tuesday 13th January, not even two weeks into the New Year I was taking steps in the right direction. Not only was I seriously contemplating a career in counselling (something I had always been very interested in), I also had a phone interview for an Estate Agency the following day. Things were defiantly beginning to look up.

On Tuesday 13th January (how ironic), I noticed I was getting little red dots all over my arms and chest while at work. I and my work colleagues laughed, making jokes that I was having a miny stroke or that I had caught Ebola (not really very funny,) but I just put it down to an allergic reaction caused by a likely change in washing powder.  Even so, I was eager to show my mum and dad and see their thoughts on the ‘weirdo rash’ I was getting but neither was alarmed. Both were excited by the news of my phone interview and wished me good luck. It wasn’t until the next morning I became alarmed. It looked like I had been chewing on a pen and the ink had spilt all over my lip. But itwasn’t ink. And my ‘weirdo rash’ had got worse. A lot worse. I carried on as normal, heading to work, excited for my interview but made sure to book myself in at the Doctors. I was very lucky to get one for the following morning at 9.20am. The interview came and went very quickly and I was very hopeful at the idea of a small career change. Although the excited began to fade as my rash got increasingly worse throughout the day and bruising started to appear all over my body.

Yet again, me and my work colleagues continued to laugh about it, saying that my boyfriend had probably given me herpes. That was when I cut myself. A very normal thing considering how clumsy I am, I tend to not even feel the pain anymore. If it wasn’t for the amount of blood pouring out of the little cut on my finger I would not have realised. I quickly got a plaster, however had to change the dressing at least three times before the bleeding slowed down. It took 2 hours and 30 minutes for the bleeding to finally stop. I was home, and worried. My parents were worried too as the bruising had become a lot worse and my legs didn’t look like my own. They were covered entirely in little red dots with large black and purple bruises dotted about occasionally. Luckily my doctor’s appointment was less than 12 hours away.