Living with Chronic Illness

Hello all,

In the last few days the Chronically Ill Community has been angry, upset and frustrated. The reason why? A TV programme being broadcast by the BBC called Sickness and Lies.

As soon as this came out, on the 5th August, so many Chronically Ill and Disabled people took to Twitter voice their disgust at a programme which is only going to add to the fuelling of Disability Hate Crime.

There is a lot of talk about hate crime, but not a lot about Disability Hate Crime. The conversations about its impact usually only take place amongst the Disabled Community. But I’m not here to talk about Disability Hate crime in general, I am here to discuss the idea of the programme ‘Sickness and Lies’.

I have watched the clip of the programme and from what I have watched I will not be watching the programme. The reason being that I believe it will just add to my already existing anger and frustration around people who believe that the community is faking it.

People like myself have a right to find community online, as we don’t always get to meet others like ourselves in day to day to life. We don’t always feel like we can go out and about and meet up with people and do stuff because we are in pain and exhausted from being in pain all the time.

It is exhausting.

To then find these articles online and TV programmes where people are exploring the ideas that there are people out there who are ‘faking it’, just makes us feel even more tired and frustrated. When you see other topics surrounding the way Disabled people are treated through disability claims, or even when they’re out and about is just adding to the feelings of frustration and anger.

All these things also generate the ‘faking it’ culture which people are lead to believe by the media. When in actual fact those claiming Disability Benefits who are faking it has been proven to be relatively low.

What I would hope the BBC follow up with is a programme about why this programme is so controversial. So they can look through social media and find comments made about their programme and enquire if those who are Chronically ill would be willing to speak to them about life with a chronic illness.

This maybe beneficial as it would allow the community to discuss their feelings about the programme. It would also allow the community to explore why more and more people are opening up about their chronic illness.

This would allow those watching it to recognise that is hard to live everyday in pain, and that what someone like me considers to be a  normal pain day may actually be someone’s ‘I need to take the day off…’

All I want is for people to recognise the fact that living with a chronic illness is not easy, on many levels, and that we put up with a lot. That we don’t need these kinds of programmes to fuel culture of hate crime which already exists but a lot of people outside our community either chose to ignore or do not know about.

That could be a programme in itself.

Anyway I’m off.

If you could check out my fundraising page and maybe donate to help me a make a difference to those living with heart Disease that would be amazing. Thank you.

Heart Disease and Mental Health

Hello all, 

I hope you’re all well.

A while ago I had a chat with the Lead Nurse for the Yorkshire and Humber Congenital Heart Network. We had a great conversation about the staff and their jobs and how they support people living in our region who are living with Congenital Heart Disease. We also discussed what I have been doing with my fundraising. 

So for this blog I thought I would write about the impact of Mental Health when you are living with Congenital Heart Disease. 

Mental Health is important, but I often wonder how much emphasis is put on it for those of us living with the Congenital Heart Disease, or those of us who are living with Heart Disease. 

One thing which may not be aware of is that the congenital heart service has a dedicated counselling service for those who are under the care of the Heart Unit in Leeds. This is pretty amazing. Let me give you a bit of an understanding as to why mental health is so important to people like myself. 

Living with a heart condition whether it is something that has come at some point in your life or you were born with it, has an impact on your quality of life and therefore your mental health. 

Here are a few things you must consider, if like me you were born with Congenital Heart Disease. 

It is advised not to get to get tattoos or have piercings, but if you chose to you are advised to keep the broken skin clean. 

Oral Hygiene is important, for the same reason you are advised not to get tattoos or have piercings. You are at risk of Endocarditis.

‘Endocarditis is a rare and potentially fatal infection of the inner lining of the heart (the endocardium). It’s most commonly caused by bacteria entering the blood and travelling to the heart.’ The infection is caused by bacteria getting into your blood stream and making its way towards the heart.’ This was taken from the NHS website

For this reason I carry a medical warning card. (I will be writing another blog about this where I will go into more detail)

Here’s something people don’t often think about when going on holiday abroad: insurance. Due to my Congenital Heart Disease I have to get a high level of insurance when I go on holiday. So it costs a lot more money for me to just go on holiday with peace of mind. The other problem with insurance is that a lot of companies won’t even insure me. That’s a nice thought isn’t it, that my heart condition is too expensive. 

Another way of looking at this is, my life is too expensive for these big insurance companies to want to cover it. That it’s not worth the investment of their company to cover the cost of my life. That really takes its toll on your mental health. Am I not worth it? I am not worth them making money out of me because they know they would lose money insuring me. Let that sink in. 

The other thing which can have an impact on your mental health, which you may not consider is family planning. Yes, pregnancy and heart health are obviously linked. But did you know that if you had heart disease the chances of you having a baby with Congenital Heart Disease is slightly higher than the normal population. The normal population has about 1% chance of having a baby born with Congenital Heart Disease. If I ever have children that goes to between 2-4%. It could be as high as 50% in some cases. 

Imagine carrying a child knowing you are at a higher risk of having a baby with Congenital Heart Disease. This does not mean you shouldn’t have children. There are plenty of resources and support available to those who want to start a family. Knowing that there is support is important. I suppose you could always get in touch with the congenital team at Leeds  and discuss any issues and concerns, but your Doctor will also be able to help.

These are just three things which can have impact on your mental health. Three very big things, which are either big life events, or things which stop you from being able to do what you want. Well, they don’t stop you, but they will have major implications if things don’t go to plan, mostly these things involve your life. 

I am not saying these things to make you feel woe is me. I am saying them because they are true and they can have impact on your Mental health because you have to be a lot more careful than others. It’s not as easy as just go an do whatever you want, because you can’t. You have to really think before you plan a holiday. I don’t want to risk Endocarditis so I don’t have piercings or a tattoos. No I am not boring I just read the warning label and decided a piercing isn’t worth it. 

Over the past year I have been cycling and walking to raise money for the British Heart Foundation and The Children’s Heart Surgery Fund. I have just over 2 months to go and have raised £1467. I aim to raise £3000. 

In terms of miles I have done 943.77 miles. 

Raising the money is hard, but what’s harder is getting people to realise why I am raising the money. It’s not just about immediate implications of heart disease, it’s also the aftermath. Not being able to live your life how you fully want to due to the nature of your condition. This really takes its toll on those living with a heart condition. By supporting my fundraising you are helping to support those living with Heart Disease. 

Heart Disease doesn’t care that you can’t buy life insurance because of the Heart Attack you had. Heart Disease doesn’t car e you’re exhausted after walking up the stairs because of the Cardiac Arrest you had. It also doesn’t care if you want to have children. 

But the British Heart Foundation, the Children’s Heart Surgery Fund, they do care. They care about supporting those living with Heart Disease, they care about improving quality of life. They also care about beating heart disease. But they can’t do that without your support. 

Thank you for your support with my fundraising. I turn 30 in August. I was born with Congenital Heart Disease and had open heart surgery at a week old. It was on the 21st of August 1991. My Brothers 5th Birthday. 

Donate Here

All the info I have got for this blog has either been through my own conversations with Doctors or from this handy website here