Help and support

freshair 1 year ago

1 reply

Hello I'm very new to all this. I was diagnosed with lung fibrosis and a rare auto immune condition for which there is no cure. In a few short years I've gone from an active full life to struggling to walk or breathe. It's been very hard to get support in the community and the calcification and pain in my body is very debilitating. I can't take strong painkillers due to allergies so it's constant pain. I've also been struggling to get physio help, as well as home nursing and help. I'm housebound right now and have found very little understanding from professionals. Though I'm terminal no one seems to be interested in supporting you unless you're end of life. I found this forum and was hoping to try and find ways to access support and also raise the spirits. Thank you

David 1 year ago

Hi freshair,

A warm welcome to our Marie Curie community and we’re sorry to hear about your condition and how it’s affecting you. It sounds like you’ve had to try and cope with some big changes in your life in recent years from being active to finding things challenging day to day with your mobility and problems with pain. It is understandable if you’re finding all of these changes hard. You also feel unsupported by professionals which can certainly make things more difficult and stressful.

At Marie Curie we’re here for anyone living with a terminal condition, whatever stage you’re at and not only at end of life, so this community is very much a safe space for you to share as much as you feel comfortable doing or to ask any question on your mind. We hope you will find your time here helpful. Perhaps others, who may be experiencing something similar, can offer some mutu al support.

If you’ve not already had a look around our website, you’ll find lots of information about living with a terminal condition and help that may be available:

https://www.mariecurie.org.uk/help/support/terminal-illness

If it might help to speak with someone for regular support, our Companion over the Phone service provides weekly telephone calls with a trained volunteer:

https://www.mariecurie.org.uk/help/support/check-in-and-chat

Our national Support Line is also available to speak with, so whether you’re looking for practical information or need a listening ear, please don’t hesitate to get in touch. We’re available on Freephone 0800 090 2309, as well as through webchat at www.mariecurie.org.uk.

Take care,

David – Support Line Officer