…What a Community!

So I just have to say…

After coming back to this blog after several months off, I wrote my last blog post without really expecting anything (other than feeling a bit better myself for having achieved something) – but instead I find a couple of other blogs liking it, and following me. I do some investigation into them, and then I delve a little deeper, and I find a whole HOST of other blogs out there involving people with undiagnosed, chronic, invisible illnesses.

There are others! Can it be true? I am not the only person suffering with horrible unexplained symptoms every day?!

When I first made this blog, it was because I noticed a severe lack of support networks for someone suffering with an undiagnosed illness. I needed somewhere to rant, just for myself. I don’t remember finding other similar blogs, and I felt as if I was suffering alone, completely cut off from the medical world and also from the world of patients who have illnesses they know about and understand. I don’t understand my illness. Symptoms appear randomly, some go away randomly only to return again, some get worse or better without any explanation or pattern. The doctors can’t explain them or provide any support for me, though they are continuing to try, and my family and friends don’t really understand, though they try to be supportive. I felt totally alone.

I almost cried when I logged in this morning and found other blogs like mine, with other people who’s stories are similar to mine. Other people who don’t fit into a diagnosis, but are sick and suffering like me. It’s horrible, it’s sad, and I’m sorry for everyone going through it, but it made me feel a little bit less alone – something for which I am extraordinarily grateful.

Thank you to everyone posting about undiagnosed and invisible illnesses. Thank you so much.

I survived!

It’s been a while since I blogged – mostly because university keeps me very, very busy! But guess what, I have some good news:

I survived my first year at university.

I did it! I survived! I SURVIVED! I managed to last an entire year at university, and even came out of it with some fairly decent grades. This is a huge milestone for me; it proves that I can still be productive, and I can still work hard, and I can still achieve great things, despite living with this difficult illness. I can do it.

Of course, this year hasn’t been without its difficulties. I did end up missing a lot more class time than I would have liked due to my health – I missed five weeks in February. Pain and breathlessness and fatigue kept me in bed more often than I would have liked, but I still completed all my work, and I completed it on time. I never had to ask for an extension or special circumstances. I’m really quite proud of that. I did have issues with my exams, because they were in a building quite a long walk from my college room and I had to walk it a few times, meaning that I didn’t do as well in some of them as I would have liked. But, I still passed them, and I have finished my first year.

I have finished my first year.

This is despite several difficulties around getting the support I should have. My university was brilliant at doing what it could, and I got exam concessions and library support, but in order to get national funding I need a diagnosis. Without a diagnosis (as the doctors still don’t know what my condition is), I can’t access help like a support assisstant to help carry my bags up the stairs, or enough time between classes for me to walk around, or ground floor rooms for the buildings that don’t have lifts, or taxis to get me between places too far or steep for me to walk. This played a big role in why I missed so many classes this year, so I emailed the funding body and they finally agreed to give me a face-to-face assessment. More good news – I had that last week, and it’s being recommended that I get all this support that I should have had this time last year. Better late than never, though, and I’m hoping that with this help I’ll be able to reach my full potential next year without constantly having to miss classwork.

On the medical side of things – I have a new consultant, a cardiologist this time. She’s very helpful, and I had a test done to check the last thing that could potentially be wrong with my heart. If it isn’t that, then she’s going to refer me to metabolic specialists (whatever that means). I’ve got my next appointment with her in a month, and safe to say I’m rather nervous about it. I should be used to waiting on doctors appointments by now – it’s been close to three years, after all – but I still hate this long-drawn-out wait. I’ll be happy when it’s over, but then it’ll be just another impatient wait for the next stage.

Despite everything, though, I have finished my first year at uni! I never thought I would get to this stage in my life, and I am so happy that I’ve managed it. Having support from some great friends has really helped, and I wouldn’t be here without their help. I am truly blessed. Even if I am ill, I’m going to carry on doing my best, and I will continue to survive and (hopefully) succeed at university.