Tag: unique

I can do this… I need to

That’s what I keep telling myself anyway.

I’m currently on the train, going up to Kings College Hospital – a hospital I know pretty well🙈😂

I’m on my way to an emergency appointment.

Since I’ve been an adult and have moved to adult care, I have never had to have an emergency appointment with my consultant. Which is a good thing. It just shows I’ve been well enough and able to look after myself without the need of medical intervention.

However recently, well the last few months actually, I’ve been noticing a few things.

A few people close to me know that I am pretty much always in some sort of pain or discomfort. I also suffer with a lot of sickness. But for the last few years they have been manageable. I’ve been able to cope most of the time.

Recently though, I’ve been struggling. Ive been trying to not admit it. I’ve been trying to push through and keep going as I always have. But it’s becoming too much now.

The pain. The discomfort. The sickness. It’s all too frequent and becoming quite powerful. It’s starting to interfere with my “normal” life despite my best efforts to hide it. People around me are noticing changes in me too, particularly my behaviour. It’s becoming quite clear that I am struggling.

Last week I gave in and phoned up my consultants secretary. I asked if I could see my consultant ASAP.

Luckily there was availability today.

So currently, I am on my way.

I’m going to tell her everything and not sugar coat things saying “I’m not too bad” etc. As I have a habit of doing…

I am pretty certain she’s going to recommend some tests.

Although, I’ll be happy something is being done about this, I am also nervous as these tests could also intefere with my “normal” life.

I am also worried that, if they found the problem that is causing me this grief, the treatment that they may be able to offer me could send me backwards.

It probably won’t but I’m so scared of going backwards with my health. I’ve worked so hard to get to where I am now both physically and mentally! What if this pushes me backwards? What if I become more ill? What if I end up being admitted into hospital on a long-term basis again? What if I end up driving those I love away from me due to my poor health?

I’m so comfortable with living a normal life now. I don’t want to disrupt it… But like a lot of people have said to me…. I need to listen to my body. And I need to put my health first!

K x

Katie’s Condition

That’s what the doctors used to call it…

I’ve probably talked about this or similar in the past but I just feel like talking about it again because of an incident that occurred today.

So I went to the doctors to have my flu jab. I have had a flu jab every year for the last few years. Recently, my dad has started having it to because he is practically my carer (although I don’t like the term ‘carer’ in my case as I like to think I’m quite independent when it comes to my care.)

Anyway so.. This happened last year, and I believe it happened the year before that too. My dad received a letter from our doctors surgery inviting him to come down to have his yearly flu jab. I never received a letter. I didn’t last year, or the year before. But I still turn up as I know I’m entitled to it. I’m what they call “high risk” due to my condition and circumstances.

Anyway, today I turned up. I thought that the receptionist would say something along the lines of “you’re not on the list” when I went to book in as this has happened before.

However this time round she looked at her computer and asked me to take a seat. I thought “Brilliant! Finally on the list! 😂”

So I waited for a bit. Then I got called in by the nurse. I walked into to the room with the nurse, noticing that she was giving me slightly curious/weird looks. I sat down in the chair provided right in front of her chair, with the computer sitting next to her.

She then continues looking at me in a slightly odd way before saying “Katie, can you tell me why you should have the flu jab. You’re not high risk or anything. Could you explain your condition?”.

Wow. Part of me felt like saying “just take a look at my notes”. Surely by looking at what I’ve been through is proof enough that I’m entitled to the flu jab.

I didn’t want to seem rude though so I went to explain my condition before hesitating for a few seconds whilst I thought “wait what is my condition?”.

There is no name for what I’ve got in general. So I gave a very brief outline of my life. I was born with my organs on the outside of my body (there is a name for that I know – exomphalos) , I’ve had complications throughout my life resulting in me having major stomach surgery, I now have a tube in my stomach etc etc.

That was luckily enough for her to agree I should have it and proceeded in giving me the vaccine.

I then walked out and went on about my day. Since that moment this morning though, I’ve been thinking. I feel like I’ve explained my story to so many people so many times. (I’m getting a little bit tired of it now not going to lie – maybe I should just show people my stomach when asked what my condition is…. Or better yet carry a sign with me at all times giving certain important factors of my life/condition. It will save a lot of time 😂)

When people ask me what my condition is, I can’t just give them a one word, simple answer like someone who has asthma, or epilepsy for example. Conditions people know. I have to tell my life story. Or give the briefs of it anyway.

Well it’s either that or say the actual – made up – name of it… Katie’s Condition. Like the doctors at Kings used to call it.

Apparently there is no one like me. Well no one who has similar symptoms, consequences and surgeries all together. I find this a little annoying because I can’t give anyone straight answers and not everyone has time to sit and listen to me explaining my life story.

However I guess it makes me kind of unique. One of a kind you might say. As far as I know there’s no one else out there with “Katie’s condition” and maybe I should be kind of proud of that.