Monday, 11 June 2018

HEALTH UPDATE - My health journey and 5 ESSENTIAL HOSPITAL BAG ITEMS


*Note: I wrote this post around 6 months ago when my health was a bit worse than it is now. I didn't get round to posting this back then but I thought I would just upload it anyway. I really want to get into more lifestyle posts than solely make-up reviews - I hope that is OK!

So if you didn't already know, my health is a bit shit at the minute. I've spent the last 6 months in and out of a hospital ward and the year before that just feeling a bit crappy. This will probably be a long post as a lot as happened but if you're interested it all began the summer before my second year of university (before this blog even existed). I just started to feel a bit rubbish. Headaches, mainly, but a lot of dizziness too. I just ignored it to be honest and did my usual "if I pretend it isn't happening, then it isn't" approach, which in hindsight isn't the healthiest thing to do. In September of 2015 I unexpectedly passed out while I was out shopping alone one day. It wasn't the first time I'd fainted before so I didn't wake up and cry "am I dead?" like I did the first time, but I was still a little worried as I was hydrated, I'd eaten enough and other than a couple headaches here and there I felt OK. I think this was the sign I needed to finally book myself an appointment with my GP who was utterly rubbish, told me she thought I was diabetic purely on the basis that my dad is, and to come back for a blood test. Now, I'm not a hypochondriac. I'm the person who, like I said, ignores the problem hoping it just resolves itself. But this time, for whatever reason (probably the fact that a qualified doctor had explicitly stated that she believed I had this disease) I thought I was diabetic and *slightly* freaked out over it.

Blood test day comes. There were three factors involved in making this a shit day and thus growing my hypochondriac-ness; 1) the nurse who was taking my bloods could not give a f***. 2) I am petrified of needles. 3) I have shit veins, like, you will spend half an hour prodding me with a rubber band tied around my arm and still have to use multiple needles and get a friends opinion before you find blood. So with a nurse who couldn't really be arsed to spend that much time messing around with my veins, and me crying and in hysterics every time the needle comes near me, I was referred to the hospital in hopes that someone there would put up with me instead. The nurse failed to tell me this and told me that because the GP thought I was diabetic I needed to go for further tests. Surprisingly, I wasn't diabetic at all and my blood tests came back absolutely normal a few days later (and, unfortunately, after my major freak out).

Jump to one November evening, I'm at my university house enjoying an evening with my housemates and I start to get one of my usual headaches. Shortly after my vision started to get a bit blurry. Then an hour or so after that my ability to communicate starts to go - my sentences are muddled up and what I'm saying made little sense to anyone but me. Honestly, I can't really remember much of this evening but all I know is that my mum advised me to ring 111 and get an opinion and that they advised me to go down to A&E and they'll make sure I get to see a doctor there. I go down, I get seen, he's worried that it could be meningitis but as the only real way of diagnosing that is to stick a massive needle into my spine he sends me home and says if I get a rash, or the headache gets worse, to ring 999. So I, in a bit of a dazed state, go back to my uni house and go to sleep. And, this makes me laugh now although didn't then, in the middle of the night I wake up with limited vision with limited light and glance down at my shoulder to see huge rashes on both of my arms. I freak out, automatically think I am going to die and run upstairs to where there is a bit of light only to realise that these 'rashes' are in fact just my freckles. Melt down avoided.

After this incident I go back to my GP to try and figure out what actually happened that night, and why I keep getting these headaches. Honestly, I was made to feel crazy and like I was making all of this up. Anyone who knows me knows that I hate doctors so this definitely wasn't the case. She gave me various beta-blockers, told me that it was just migraines and there wasn't much she could do, and then something about having bad circulation (hence the extreme dizziness and now the extreme pins and needles I was experiencing). Throughout my second year of uni, I probably went back to the GP around 8 or 9 times just to be told the exact same. It's a migraine. You'll be fine. Take these tablets even though they're not working. During this period, I had missed exams and classwork and was really behind on my studies. Some days I was so ill that I couldn't lift my head from the pillow. I also had developed nausea and sometimes vomiting, although it wasn't regular enough for me to really notice and I probably only experienced this about once or twice a month.

During the summer, I realised that my vision had gotten quite bad and although I had always wore glasses, my glasses were no longer strong enough so I booked a routine appointment at my local opticians. If you haven't had an eye test before, they scan the back of your eyes to check the optic nerves. I was waiting a suspiciously long time before I was seen, and when I was finally seen I was sent back outside to wait after she checked my file. 3 or 4 doctors were called into my opticians office and I was still sitting outside. Finally, I'm asked to go in and she says that the optic nerves behind my eye (basically the nerves that connect your eye to your brain) were extremely swollen. She asks if I've had any headaches. I said yes and that I was on a medicine called propranolol (the beta-blocker). She asked if I had any nausea and vomiting. I said now that you mention it, yes. She asked if I had any dizziness, pins and needles, if my ability to communicate was in anyway impaired. My answer was yes to everything.

My optician, who was only around the same age as me, looked quite worried and left the room to go speak to her superior. When she came back she advised that I needed to go to the hospital ASAP and request a CT and MRI scan to check for any tumours. Tumours?? I thought I was only going in for an eye test! She explained that my swollen optic nerves could mean one of three things; 1) I had a brain tumour and that the pressure inside my skull from the tumour was causing my optic nerves to swell. 2) I had a disease that meant my brain produced too much CSF and thus my body mimics the symptoms of a tumour without actually having one (basically produces too much fluid that fills your skull and spine) or 3) I was just born that way. So after a billion and one further tests, a load of questions about my GP and my symptoms, I'm allowed to go home.

As soon as I get home I get a call off my optician and she says that after speaking to her colleagues she advises that I go to the hospital sooner rather than later and that it is quite urgent. Luckily, due to private healthcare, I had an appointment for an MRI scan within a day.

I have an MRI (basically you lie in a tiny tube and they take a full body X-ray - not a nice experience and very claustrophobic!!) and luckily, there are no big tumours present!!! Hurrah, the first bit of good news in ages. But that still posed the question am I scenario 2 or 3?

Shortly after, I have an appointment with a doctor at the hospital and he explains that without a lumbar puncture (a needle they stick in-between the vertebrae of your spine to extract CSF (brain fluid), the same test needed to diagnose meningitis that the first doctor wouldn't give me) he couldn't give a definitive answer. I was put on a medicine called diamox and sent on my way.

Now, when I tell you being on diamox was the single worst experience I have ever had I am not exaggerating. This medicine made me vomit 24/7 and when I wasn't vomiting I was crying or in excruciating pain. My skin broke out, my hair fell out and I just felt shit. I lasted around 3 weeks on the lowest dose before going back to the doctor and telling him I couldn't take it anymore. He sympathised and said it was fine if I stopped taking it. So I did. And a few weeks later I went to university to start my final year and forgot all about any health issues.

Until I woke up one morning and was practically blind.

I had some vision in my right eye. I could see somewhat, but it was like looking through of a really small tunnel. I spent my day on the sofa feeling sorry for myself but still refusing to go to the doctor as I was too scared of being told I was faking it again. Knowing there was no tumour present, I thought I was OK.

My housemate bought a couple bottles of wine home to drown my sorrows and we ended up getting a little bit tipsy. I collapsed and although I can't remember this, I was apparently screaming that I was in pain. My housemate promptly, albeit a bit drunkenly, rang 111 again and asked what we should do. Due to it being 4am, they told us that the only option really was a visit to A&E but as I lived in Canterbury at this time and the A&E department at our local hospital had closed, I had to endure a 50 minute car journey to Ashford - the closest hospital that would see me.

So my housemate and I decided to pack a bag incase you know, so we had 'essentials'. We threw yoghurts, a blanket, lip balm and a capri-sun into a backpack and got in a cab. I remember finally getting to A&E and making my entrance known. I screamed to the woman behind the desk that I needed to be seen because, you know, I was blind and everything, and that my optic nerves were 'fluffy' (I'm still unsure why I said that). Luckily, probably due to us being loud and screaming about how clever we were for remembering to pack yoghurts, we were seen promptly and taken to the main A&E ward. I was taken for another MRI and CT scans - all clear - and hooked up to an IV. Well, as I mentioned I have shit veins, an intense phobia of needles and this time the added bonus of intoxication so I should say rather I was hooked up to an IV after I had vomited bright purple sludge (thanks wine) all over my nurses shoes. Our phones were also about to die and we came to the realisation that we had no phone charger, no spoons for the yoghurts, no straw for the capri-sun, no hairbrush, no change of clothes, barely any money and most importantly... no make up remover. We suddenly didn't feel as intelligent as we first thought we were.

Another nurse walked past to take me for some other form of test and my original nurse said "ah, meet Alex. You'll need all the luck you can get" which at the time I thought was hilarious. It now being around 9am and as neither my housemate or I having had any sleep we crashed and the 'excitement' of being on a hospital ward an hour away from anyone we know had faded. Later that evening I was taken to a proper ward (not just the A&E department but the clinical decision unit), one where I could sleep and have my own bed and was greeted by the most unhelpful nurses I've ever met. To top it off, I was now in so much pain that I ended up just pacing the hallway as I was beginning to get restless. My very unhelpful nurse said I was having a panic attack (I wasn't) and made the mental health team come visit me in the morning to discuss. I really was not a happy bunny being woken up to a clip board being shoved in my face with a questionnaire of very invasive questions. Everyone on my ward was old and senile and I spent majority of that day being shouted at by the woman in the bed next to me who thought I'd stole her purse. I also had the pleasure of being placed opposite a woman who kept announcing she'd wet the bed. Great.

In short, I was stuck on this ward for a week. I finally had a lumbar puncture (which was HORRENDOUS - WORST PAIN OF MY LIFE) and diagnosed with scenario 2 (excess fluid) and sent packing. Luckily my mum had driven down from Birmingham by now and was able to help me home. I was given the right medication by this point, I felt less crazy about all the symptoms and my vision had even started to come back. But all I wanted was a nice hot bath. However, obviously, my shit experience did not end there as the hospital had sent me home with an empty box of medication. Brilliant.

I go back to my GP to get the right medication, I finally get a neurologist and get referred to the ophthalmology department at Canterbury hospital. I even got given an emergency number for my hospital so that I didn't have to go through all that palaver of going to Ashford again.

Fast forward to after Christmas and my first week back in Canterbury after the Christmas break. I get a call off my neurologist saying that there is a place for me on the neurology ward and that I needed to come in from a lumbar puncture again as my fluid is getting too high (an LP also drains the fluid, not only testing it, so when medications were failing this was an emergency option). I get rushed back to hospital and spend another week there getting prodded with needles. I was put on another horrible medication, topiramate, where my hair fell out in clumps and my speech got so muddled up I couldn't put a sentence together which I lasted a couple of months on and quit.

From January - June of 2017 I was in and out of hospital constantly. At least once a month I would receive a phone call off my neurologist saying there was a space on my ward and I needed to come in for an LP. It was that frequent that my nurses knew who I was and treated me a bit like a local celebrity. Unfortunately this constant in and out ruined my final year of university and as I had been elected captain of university cheerleading squad, ruined cheerleading for me too.

And now it's present day. I still get headaches and nausea but nowhere near as much and I rarely have to go into hospital anymore. Although LP's are awful they make me feel like I'm being proactive with a disease you can't really control. Unfortunately for me no medications worked and LP's became my only way of treatment. Oh, and because my disease is so rare (1 in 100,000 people get it) every time I get a new doctor they have no clue what I have and thus no way to treat it so it became very annoying very quick explaining to people what I have and what my symptoms are. My biggest symptoms now are fatigue (oh my am I tired! All the time!) and dizziness.

It's also pretty crap having a disease that nobody can see. Majority of the time nobody believes me, heck, my university didn't even believe me even though I had folders and folders full of doctors reports and hospital admissions. I was also supposed to go travelling this summer which I've had to cancel due to health concerns and I think my boyfriend resents me a bit for this - but what can you do!

------------------------------------------------------------------------------------------------------------------------------


Quickly, just to end this extremely long post (and so that nobody ends up in the scenario I was in during my first hospital admission) I've compiled a list of 5 essentials to take to the hospital with you. I, at one point, used to keep a bag of all these things in my car just in case I had to go last minute.

❤ 1) A blanket! Hospitals get cold and majority of the time they only supply thin, scratchy bedding. Once I became a bit of a hospital go-er pro I quickly learned the importance of taking my own fluffy blanket with me.
❤ 2) Cleanser. Now, it is up to you if you choose to take make up or not with you. I sometimes did but shortly realised that all I really would wear was a bit of concealer and perhaps eyebrow pencil. But even if you choose not to take make up with you, cleansing your skin with a luxury and fresh-smelling cleanser makes you feel so much more put together. Some wards have showers but some of the short-stay wards don't, so don't rely on a shower to help you feel fresh.
❤ 3) Noise cancelling headphones. I can't explain the importance of these. Earbuds are not enough to drown out the sounds of the lady next to you crying, or the woman opposite snoring. Sometimes I would just turn the noise cancelling on and not even listen to music. Having a bit of sleep in hospital sends you from going completely insane.
❤ 4) Night eye mask. An eye mask that prevents light getting in is a must. Sometimes there are emergencies on the wards and the lights will come on so that the nurses can help the inflicted and sometimes they just come on randomly. Also, the lights turn on around 5-6am every morning and usually don't turn off until quite late. Like I said, getting some sleep really makes a difference.
❤ 5) Moisturiser. And perhaps an odd one, but hospital air is like airplane air - drying. I'm not sure what it is but I always leave the hospital feeling dehydrated. Taking a nice moisturiser really helps.

I know this was a long post and kudos to everyone who made it to the end!
Share:

No comments

Post a Comment

© ALYSPACE | All rights reserved.
Blog Layout Created by pipdig