My disease is Ulcerative Colitis and it is going to be mine forever!
The time feels right to start raising awareness and sharing my story because my disease is not going anywhere, and it certainly is not going to beat me. Please don't let the title of 'My disease' scare you off because I want these posts to be knowledgable, helpful and informative. Having a chronic disease has become part of daily life to me, I want to write these posts to share my experiences and not feel isolated throughout.
As I'm writing this post I'm lying in a hospital bed and I'm quite happy about it. Over the past few months I've been on a drug called Humira and although my body hasn't created anti-bodies to fight it, I've not been getting any better. I've had soooo many tests, my levels have been all over the place and basically since March my life has consisted of waiting. Waiting to see if Humira would work, waiting for second opinions and waiting to see whats next. It's been hard not really knowing whats going on, but I truly do think I've pushed through and battled on. Unfortunately, over the past two weeks things haven't been going very smoothly and it was decided I'd be admitted to hospital to have various scans, tests and have a course of IV Steroid treatment to try and maintain my symptoms whilst decisions are made. So right now I'm getting steroids injected to me 4 times a day and they do work wonders, I just hope my course of steroids doesn't last too long for my moon face to return!
If you're reading this, you're probably wondering why I'm on my laptop or snapping selfies in hospital, well it's because I'm in a private hospital. I received my diagnosis privately which a lot of people chose to do as it's much quicker, but then they are referred back on to the NHS. For me, I receive a lot of care both privately and on the NHS and I am 100% grateful to have access to both services. When I was diagnosed I was 17 which is technically still a child so the influence of my parents played a huge role on where I went for care. We originally thought going private for the diagnosis would be it, but due to the severity of my disease and the instability over the past year we carried on privately. I honestly don't know what I'd have done if I didn't have access to both services as my health has been so unstable.
Personally, I've never addressed this on my blog but I didn't really think it was important. I think the NHS does incredible things every single second of every single day and it definitely has done for me however, people working in private healthcare are just as incredible. At the end of the day I use private healthcare because of my family and if I had to support myself, I wouldn't be in the position to use it. I've never wrote about this on my blog because I feel people might view it as quite controversial? I don't know.
I think of it like this...
I'm just as ill as I would be if I was 100% on the NHS and either way, I need care. All doctors, surgeons, nurses, occupational therapists, mid-wives, radiologists, EVERYONE needed in ANY hospital is incredible at their job whether it's NHS or Private. It can be quite controversial as I feel people think 'Well if you're private, why should you use the NHS?' but to me, everyone deserves access to the NHS if they contribute. My family pay tax just as anyone else does meaning they pay for the NHS, they simply made the decision to use our private healthcare as they thought that was the best option for me and I agree, it was. The NHS is struggling and I do believe things might've gone differently if I had gone through the NHS. Yep, I would've probably been diagnosed but it may have taken a lot longer to get the diagnosis and thats not me slating the NHS as I still think it's incredible, it's me speaking from experience and others experiences.
Basically, I'm bored in hospital and thought I'd just ramble on a bit. I'd love to see what peoples thoughts are as I feel it can be quite a taboo topic and I don't think it should be. People in private education never feel as if they should hide that so I don't see why private healthcare should be any different. I'm just mumbling on now as tomorrow morning (Saturday), I'm having a Flexi-Sigmoidoscopy and I need to take my mind off that. It's really not the worse thing in the world, but I'll be glad when it's over!
Holiday posts will be back soon when I'm out of hospital but for now enjoy some sick, steroid selfies!
Lucy Jane