Today you saw me using my locker in the lab buildings at university. The ones that we aren’t meant to have on long term loan and get emptied out after each session. You saw me putting the key back on my lanyard, putting my lab coat, folder and some other bits into it, shutting the door and walking out. I heard you mentioning to your friends how unfair it is that I get to have that locker and nobody else can. Well, let me explain to you a bit about why I have that locker.
I have a couple of health problems. Brittle Asthma, Adrenal Insufficiency, Diabetes, Supraventricular Tachycardia (in other words, my heart goes a bit stupid fast sometimes) and have had to have both hips replaced and am waiting on shoulder surgery. I also have a couple of life threatening reactions. So, needless to say, I have to carry a fair amount of extra medications around with me. I’m not actually in uni right now, cause I’m in hospital following a life threatening exacerbation of my asthma. Oh yea, please stop spraying your deodorant in the halls, it’s making my life difficult. Cheers. But this is about half of what is normally kept in my locker at uni. It’s what I like to call my “Get out of jail free” kit. It’s basically the stuff that if it really came down to it, would keep me alive. Sounds dramatic, but it’s kind of true. What you see is my epipen for when I react to the balloons that are currently all over the student union or have a massive asthma attack that goes from 0-100 in 5 seconds, my steroid injection kit (because we all need to look like Hulk, right? Or my body has decided to stop producing it’s own steroids and has chucked a fit at the idea of having to, so I have to carry artificial means around with me incase I get put under a lot of physical stress and need a boost quickly), some nebulisers to stop my airways from closing up when I have a reaction to your deodorant, some cereal bars for when my blood sugars go dangerously low and I start getting grumpy and confused, and then that little orange tin has a lot of tablets in it like more steroids, paracetamol (yes, even we need the paracetamol sometimes, it’s not just a fuck off pill), anti-histamines, diazepam and some anti sickness. It really does start to add up. And that’s not including the device I have to carry around to use my nebules in, it’s about the size of a CD walkman by the way (if you remember those?) or my blood sugar testing kit.
So I have to carry a lot around in my rucksack. Don’t forget as well that I’m waiting on surgery on my shoulder, so carrying a heavy bag can add to the pain I get there. And in my hips which have both been replaced. Add into that normal uni stuff like books, notepads, pencil case, a drink and then whatever other crap I have in my bag (I found thai baht in there the other day), It gets heavy. It also means if I manage to forget something important, that I’m not stuck in uni without a rather important medication or piece of equipment. I like to keep spares there incase something like that happens. I think that’s fair, wouldn’t you say? But I know that “It’s really unfair that there’s one rule for one person, and another for everyone else” and I would totally agree with you that they should provide us all with lockers. But there’s about, what, 3000 people at our university? You planning on putting those lockers in the….? I would gladly give you my health problems if it meant I didn’t need to use a locker. I know you didn’t mean it in a nasty way, or at least I hope you didn’t. But can you see now why I don’t like having to carry a heavy lab coat, my folders and lab stuff around with me all day after a lab? And why I do need to have a locker? It’s not just for my deodorant and make up, it’s kind of important.
Well on my recent admission to hospital, I got the results of the MRI scan of my pelvis and hips I’d had the week before. I knew before I’d got the results, what the likely options where. It was either Avascular Necrosis, a worsening of my Osteoporosis or torn cartilage. AVN is caused by long term steroid use, so I was preparing myself to be told that it was that, but that they’d be able to treat it with medication, or minor surgery. The realities weren’t so rosy. My respiratory consultant was the one that actually told me, because the orthopaedic consultant was on annual leave, and I knew it was bad from the moment he walked in. I have Advanced Avascular Necrosis with oedema and labral tears in my right hip, and moderate AVN in my left hip. We’ll call my cons Dr R for easiness, told me he’d never seen the severity of necrosis and degeneration in the hip as he had in mine. Bearing in mind Dr R has been a consultant, all be it a respiratory consultant, for about 30 years, that wasn’t good. Because AVN is primarily caused by long term steroid use, which is a treatment for asthma, he knew quite a lot about it and had seen it before in many patients. So for him to tell me it was that severe, was a major blow. And as soon as they actually realised I wasn’t just addicted to morphine, or experiencing a low pain threshold or going through withdrawals, they put me on stronger painkillers. This being after they’d left me all weekend without my proper painkillers, and the ones they did give me made me feel incredibly odd. Dr R was not impressed by the treatmeent I’d received by the oncall team over the weekend. I’d been led to believe he was on call that weekend but apparently not. Stopping an asthmatics nebulisers in the middle of an acute attack was stupid, and he agreed. The pain I was experiencing was nothing like I’ve ever experienced. Being off painkillers with an avascular hip was agony, and I’m not afraid to say it.
But anyway, with the diagnosis now definite, we can start to do something about it. From what I believe, the most likely treatments are either Core Decompression or a total hip replacement. Each has it’s advantages and disadvantages. CD is only an option if the necrosis is only in a certain area of the femoral head, but it’s the one they’re more likely to want to do, because hip replacements are not something they like doing in people of my age. They will only last 15-20 years and if I need a second one, they’re less likely to do it and it’s less likely to be as effective. So CD is the more chosen route for someone of my age. I’ll know more about what their plan is though when I see the orthopeadic surgeons. That appointment hasn’t come through yet, but I’m hoping I’ll be seen in the next few weeks. To be honest, I just want it all over and done with now. I’ve had joint problems for nigh on 3 years now with several diagnosis’, including it all being pyschological, thrown around. To now have them tell me after all that, that infact it is something “major” so to speak is just rude.
This week is going to be a difficult week. On the 20th February we lost one of our dearest friends, Kat, to a terminal condition called Auto-Immune Vasculitis. This Tuesday is her funeral. It’s going to be a very difficult day. Kat wasn’t ready to get her angel wings, she was too young and too much of a fantastic person to have gone through the pain and suffering as she did. But she’s no longer suffering, which is a consolation to us all. She was a great support to me over the past few months when things where difficult with cookie. She would come up from Sheffield when I needed a hug. She stayed overnight a few times to make sure I was OK aswell. She was a very selfless person. We all have our faults, and Kat ackowledged hers and would always attempt to make sure that if she had ever upset anyone, that amends were made immediately. But she had far more amazing traits than faults and she was someone who was always trying to spread love and hugs. She’d give even a random person a hug and would do everything she could to help. And this is the Kat that we would all remember. The person who would bring KFC up to the hospital and demand cutlery from the nurses, who would steal the O2 taps in the bays of people she was visiting so she could stay longer. My friend Kira is coming up on Monday, and will be staying until Thursday. She’ll be going to the funeral with me on Tuesday, along with our friend Dorri, who is giving us a lift and being an all round star as always.
It really is times like this, difficult ones, that we realise just what we have. When I got told about my hip, I was a complete mess. I needed a hug. And there is no family near by to call on in situations like that. But I’m lucky. I have friends. Friends who, that when they heard I was having a bad day, came up to the hospital with sweets and crisps, and would cheer me up with some nutty talk and games of UNO. At the moment, I’m struggling to get around the flat and keep the place clean and tidy. I’m meant to be on complete bed rest. As it is, I’m refusing to keep that one up. I’m too stubborn and independant. But when there’s things I can’t do, like carrying the washing out to hang, or doing the shopping and carrying it in and out, my friends rally. They can’t do enough to help. And it’s amazing.
I’ve started drawing again. It’s giving me something to do when I’m bored in bed or hospital. Cartoon characters are one of my favourite things to draw. But I’m trying other things too, like human portraits and grafitti writing. I’m not Walt Disney yet, but I do enjoy doing it, and it’s burning some time.
But anyway, will try and post again soon. I’m really not good at the whole regular posting thing. I’m considering doing a review blog about books I’ve read. A friend has sent me his book of poetry to review, so I’m quite looking forward to reading it and reviewing it.
Alternate career path maybe?
Sorry I’ve not blogged in so long, things have been kind of manic.
I’m still living in Manchester with my friend, but I’ve put in an application for my own place now which will make things easier. I’ve also asked that it be a 2 bed so said friend can move in with me. It’s good because neither of us do living on our own very well. As was discovered when I last lived on my own, and I’ve been living with her for the past 8 months because she struggles living on her own. It’s a big commitment to undertake being someones carer, but I’m finding it a lot less stressful than I originally thought. Probably because I don’t really act as her carer. I’m more a friend that helps out when needed. But that’s what friends are for, right?
We went to Tenerife in April for 2 weeks to celebrate her 21st. It was absolutely brilliant and we both really enjoyed it. It was the break both of us needed and getting to see dad and just chill out without having to worry about appointments and stuff was excellent. What ruined it though was getting home and finding out the electric had gone off, which had knocked the freezer off and we’d lost £50 worth of food. We had left £7.50 on the electric meter to make sure there was enough to run the freezer etc which had to stay on while we were away. There was enough food in there to make sure that when we got back we weren’t running around trying to buy food etc but had forgotten that Scottish Power have a standing charge of 50p a day. We were away for 3 weeks in total and then running the freezer killed it. So we get back, there’s no electric, no food and no money. Bollox. Luckily we had enough money to get the electric sorted and cancel the debt that had run into it and our support worker and cookie’s mum rallied to get us some food and things sorted. The day was saved!
I’ve been back in hospital a few times aswell, but that’s nothing new. I think it’s just a case of being something I have to learn to live with, but hopefully my new consultant will have some better ideas than the one in Leicester. So crossing fingers!
Love till next time!
Right, I need a rant, and this being my blog is the place to do it. If you don’t like this fact then bugger off.
Ok, It’s recently come to my attention that certain people don’t like my attitude so to speak. I have two words to you. Stick it. If you think I enjoy being in hospital, that I enjoy going to ICU and having lines coming out of every fucking limb and hole you can, that I enjoy spending 10 weeks out of my school year stuck in a hospital bed and then managing to pass 6 A-Levels with distinction, then you try it. You deal with the fear when they tell you you’re going to ICU and the pain when they spend half an hour literally digging around in leg looking for a vein.
Look, I have asthma. I accept that. I also accept that I have to change a lot of things I do because of my asthma. If you knew how angry/upset/frustrated it makes me then you’d maybe have some small understanding of what I go through. Yea, Ok, you might have asthma too. You might feel as shit as I do. But I honestly thought that the people who go through it would be the last people to judge me for who I am and would be there to support me. If you don’t like this, then stop reading my blog, block me on facebook or whatever, But don’t ever, ever tell me that I enjoy this kind of thing.