A new income

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My situation is complex. I have autism, arthritis and now have a stoma after colorectal/anal cancer. I am currently claiming PIP which was a nightmare when it changed from DLA to PIP. Was turned down by a company employed by the government but with the help of citizens advise went to a tribunal and won. Now the government are threatening to change the goal posts once again. If I got a part time job the employer wouldn’t like the amount of time it takes to empty my colostomy bag or change it which so far can be unpredictable. Then there’s the problem with autism which affects the way people judge me.  I have a dream of being able to write and earn an income at home by writing books but this is just a pipe dream. I have encountered problems in my life which are impossible to solve. A small one which is frustrating is that I can’t send emails via my gmail directly but can if I use a website. This is a problem I’ve tried to solve in the past but have got nowhere. I anticipate many of these if I tried to get a book published. Some of the problems are difficult to explain. The latest one was an app which when I tried to creat an account won’t allow me to input the numbers of my email in.  I feel there is no help out there. I’d need a team of experts to overcome these problems especially if I wanted to get published.

  • Hi Trillium,

    Thanks for the reply. I’m so sorry to hear about everything going on for you and the challenges you’ve faced in finding support in the past. I'm glad you feel comfortable opening up here and sharing some of what you are going through. We see daily how important it can be to have a safe space to vent and process things we needed.

    Please keep in mind that our Support Line are there for whatever you’re going through, even it its simply to have a listening ear to chat things through with. They can also let you know what other options of support are available and would be relevant to you. 

    Take care and please know that there are people who want to support you through this.

    Best wishes,
    Dylan

    Macmillan's Online Community Team

  • Been a bad day today with leaking stoma bags ( pancaking)  twice in early hours. Glad I can open up. The writing thing I’ve been doing since 2017 will never get published and won’t be able to leave my mark on the world. When I compare what’s on television e.g doctor Who my ideas I think are way better than the poor story lines they use. Getting someone to actually help me who I can trust is impossible because of the autism and being invisible.

  • I'm sorry to hear it's been a tough day.

    If you ever want to connect with other member's dealing with stoma bags you could join the Ileostomy, colostomy and stoma support forum and post there. 

    It can be tough to carry on when it feels like it's going nowhere, but I hope that changes for you and one day you'll be able to get published.

    Best wishes,
    Dylan

    Macmillan's Online Community Team