30 day chronic illness challenge

It's day 2 for me:

My disability and pain makes me feel insecure to do things that I used to. I lack the energy and the will of go out and have fun. I have pushed some people away. It has been a rough transition from bein the caretaker to be the one needing a caretaker.

Day 2 - How have these illnesses affected my life?

I live in fear of the dreaded 'C' coming back. I know it has been 26 years now of all clear...

I live in fear of my transplanted kidney failing. Am I doing the right amount of exercise. Am I eating the right things. Am I drinking enough water. Am I too stressed.
A transplanted kidney can last 10 to 15 years. But I've seen people who have gone from great blood test results to picking up a sick bug and that was all it took for their transplant to fail.

My medications have many side effects. Luckily I have very few. I have hand tremors, which although embarrassing, I will take 10 times over as it is the lesser of the evils.

I'm trying for a family. I had to wait until 3 years had passed with my kidney transplant and then we could start trying. It took a while to settle me on new medications so now 5 years on we have started trying. I am a little aware of time ticking but what will be will be. I will be gutted if I can't have a baby though. It has always been a possibility - they weren't sure if the chemo or radiotherapy would affect my development and ability to have a family. But my current consultant seems happy to encourage me along the way.

I am overall a worrier. My problems are more coming to terms with what I have and how to face the future. My physical health is stable and maintained by the hospital. They always say "whatever you are doing, keep doing it" when I got for appointments. I'm luckier than some people who have it really bad. I still work full time which is a massive plus for keeping me a little more sane.

I'm trying to live the best life while I am able to, but feeling quite mortal and uncertain about the future does put a dampner on things. This is why I'm here. To accept what I have and just do the best I can and feel confident in myself that this is enough.

Hello everyone. Day 3:

I was diagnosed in 2011 with an Osteoblastoma (which is a benign tumor). I had a surgery to remove it and sadly it didn't worked. In mid 2012 it grew back more agressive, had another surgery in june 2012 to remove the new tumor and it turned out being an osteosarcoma by december I was officially an amputee. I still can't remember much of that year.

Day 3: How did you get a diagnosis?

My kidney cancer was diagnosed when I was still a small toddler. My Mum discovered blood in my nappy or during potty training. She took my to see the GP and he had a bad feeling it was something serious so reffered me for more tests. That is when my parent's world collapsed. It was several years until they would start to see hope again.

My rickets were diagnosed because I was very knock kneed. There is a picture of me standing on a beach aged 5 or 6 with my legs as close together as I could. They were together until my knees and then they splayed outwards, almost looking like my feet were on repelling magnetism. I was told I would end up in a wheelchair if I didn't have surgery.

My heart failure was diagnosed when I was at college. I had been having dizzy spells and having to stop half way up a flight of stairs as I would get so out of breath. I was regularly attending clinic for my kidney and so they ran an ecg on me. The heart beat looked quite wonky. Then after more tests (including an Echocardiogram (Cardiac Ultrasound)) they could see the problem was with my left ventricle. The muscle was weakened and so struggled to pump blood and oxygen around my body properly.

My kidney failure was a side effect of my kidney cancer. I get closely monitored by the hospital and so they can act quickly with a diagnosis (and treatment) if and when anything else arises.

Day 4 - How have my friends and family reacted to it?

Some of my chronic illnesses are older than my earliest memories! For some family members they have known longer than I have about my illnesses.

My Dad is great. He treats me normally. He mocks me and makes light of situations but also knows when to just listen.

My Mum is overprotective. I feel she maybe wrapped me in cotton wool too much when I was growing up. I wanted to just run, play and socialise but I wasn't really allowed out of arms reach. She also googles things too much. "You I looked up that cough you mentioned and I think xxx herb or vitamin will help." I try and take what she says with a pinch of salt. She is only trying to help but I'll leave medical science to do that.

An ex boyfriend was worried he would catch my kidney disease if i got too close to him. I'd built up the courage to tell him, I felt all emotional and then he shuffled away from me with a look of disgust. Needless to say he was told where to go pretty quickly.

My employer has been very understanding. They allow me to go to my hospital appointment and my support group. They know I may have to take a few extra sick days off than the average person. They even talked about finding me a room to do peritoneal dialysis sessions if it came to that

My husband has never pitied me. In a way he is quite like my Dad - he will make jokes about me but then get me a hot drink when I can't. He helps me a lot without even realising. He keeps me sane and makes me feel normal! He has also said that I don't allow my illnesses to define me, which I found interesting as all I feel is like a walking medical experiment!

Day 4!!

My family and friends are adapting. It's difficult at times because the changes I've made after the sickness and everthing. So, we're learning to be around each other. Its process but we're managing

What is a chronic illness/disease?

A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear.

Here are some examples of chronic diseases and conditions.

Day 5, how does being chronically ill make me feel?

Physically: I'm in a good phase of my health currently. But i get occasional pain in my transplanted kidney, tremors from my medications, the feeling in my fingers are reduced, scar tissue in my oesophagus causes swallowing problems. Sometimes I'm tired, so tired...

Mentally: I have panic attacks thinking about the possibly uncertain future. I'm sad about how much of my childhood was in hospital. I kept having flashbacks to my kidney transplant operation. I'm worried about the future.

Before my transplant I had constant dull headaches. I would ache all-over. I would feel constantly nauseas. I tried to hold down a full time job but would feel drained at the end of the day and need a sleep when I got home. There was nothing I fancied to eat. I was having constant tests - a nuclear test to make sure my heart was string enough to take the upcoming treatments, x-rays on my chest, referral to rheumatology as my pelvis and hips were inflamed (sacro-illiac joint in particular).

It felt like a miserable existence. I'm in a better place now, things aren't perfect but I'm alive.

Day 5:

Simply put. It makes me feel awful.

Day 5

I guess it mostly makes me feel disappointed in myself. With pcos there is the possibility that I would have a harder time having a child down the road if I decide, such as the higher risk of miscarrying. That kinda sucks ya know?