Living with chronic illness

Living with chronic illness

Living with chronic illness is a huge challenge for anyone. Not only are there physical symptoms to deal with, it is also mentally challenging to stay on top of the pressures and anxiety ill health brings.

I have lived with cystic fibrosis since birth and this has affected my life in many ways. Cystic fibrosis affects the lungs and pancreas and can also affect many other organs in the body due to the overproduction of mucus. I have taken pills most of my life and as I’ve grown older, I have had to step up the intensity of my treatments. I do physiotherapy to clear my lungs and also do inhaled nebulisers (inhaled medication) most days. It is all very time consuming. My mother also had Cystic Fibrosis and passed away at the age of 50 in 2000. My Uncle had Cystic Fibrosis too and died when I was 13 years old. He was just 23 years old.

When I was 17, I was diagnosed with a giant cell tumour on my left leg and that had to be removed. Thankfully it was not malignant. This is a rare tumour apparently.

Then, at 26 years of age, I contracted TTP (Thrombotic Thrombocytopenic Purpura), a rare blood disorder that affects the platelets in the blood. My platelet count was dangerously low. Many complications followed – pneumonia, kidney failure, seizures…multiple organ failure. I went into an induced coma and received chemo to deal with the blood disorder. I lost all my hair and it was “touch and go” for many weeks. After 6 weeks in intensive care I pulled through, although I was weak and very thin.

My latest challenge is a diagnosis of colon cancer. I had a polyp removed from my colon a month ago and it turns out it’s malignant. The docs aren’t sure  if the cancer has spread and there will be an agonising wait for about 6 weeks to find out…Surgery is coming up mid March to remove around 15-20cms of my colon and then the Docs will test the surrounding area and lymph nodes to see if the cancer has been contained. Cancer is such a lottery…life is a lottery.

It has got me thinking (more than I usually do!) , coping with illness is very dependent on mental strength. I use my personal experiences to help me in my work though and try to be philosophical about life and the stuff it chucks at me. No one has any guarantees and the answer to this is to get the most out of each day (sorry for the cheesy cliche). Don’t waste more time than is absolutely necessary on things/people/experiences that drain you, pull you down or make you feel ‘less than’.

Tell people how you feel, don’t let those moments pass.

I shall blog about my health and upcoming experiences as and when they happen. If you have been touched by illness in any ways (yours, or a friend/relative)..please get in touch. Sharing helps us all to cope more effectively.

Mandy X

Please donate to the Cystic Fibrosis Trust. More funds are needed to find a cure for CF. There are many promising treatments coming up. Especially from a company called Vertex who have found a way to treat the underlying genetic causes of CF rather than just dealing with the symptoms:

DONATE TO CF TRUST HERE