"Depressed and abandoned"

I have been diagnosed with a life changing lung disease.  I've been told that there's no cure for me. I was told to help me with my diagnosis I should start taking immunotherapy medication. When I went for my first consultation appointment feeling very anxious and very confused on what was happening to me, I was reassured by the ILD nurses what was going to happen. We had a long chat about everything , and how to take my medication and that I would have a phone call every month to check in on how I'm doing.  I also was told that if I'm unsure about anything I could phone the ILD nurses up at anytime and I would have to leave a message and one of the nurses would phone me back. 

I did phone up to ask about something that I was unsure about. One of the nurses rang me back the next day and reassured me that everything was ok. Talking to her helped and I thought that I'm going to be cared for if I have any issues. I wasn't sure about what side effects would be like from the medication I was given, and the ILD nurses didn't explain either on what to expect . Even though I feel absolutely robbed of my life with having this life changing diagnosis, what causes me to have a lot of anxiety, knowing that I had the ILD nurses to phone up to talk to really helped. 

I'm not a person who likes to bother anyone even if I have a problem. After a few weeks I was starting to feel unwell. I wasn't sure if it was the side effects from the medication I was taking or if I had aN illness. I phoned the ILD nurses up to tell them on how I was feeling thinking that they would phone me back to give me some advice.  To my disappointment I didn't get a call back until a week later. The ILD nurse said to me that if I felt ill I should phone my GP not the ILD nurses. Blimey, I thought, what a change in attitude towards me.

It really upset me because I felt like I had done something wrong in phoning up for some advice on wanting to know if it was the side effects of the medication what was making me feel ill. I went to see my GP and they couldn't find anything wrong with me . They advised me to get in contact with the ILD nurses  to see if it was the side effects what was making me feel ill.  I was very reluctant to phone them back up but I wanted some advice. This time I didn't even have any ILD nurses phone me back. 

Since this happened a good few months has gone by now. I haven't had any contact with the ILD nurses, not even the one call every month what was promised to me .

To say that I have a very serious health condition I've just felt left alone just to get on with it. I've been in and out of hospital a few times since with breathing problems. I feel that I can no longer phone up for any help if I need any advice. 

I feel like I've just been given a lot of medication to take and just get on with it. I feel like my health problems are starting to get worse and I'm getting out of breath easily. With the lack of care from the ILD nurses I will no longer phone them up. My mental health has took a turn for the worse because it's been months since I was diagnosed with my lung disease and I haven't heard anything from anyone. I felt so depressed and abandoned by the ILD nurses that I felt that I needed to phone the mental health team up. At this point I felt like I was in a mental health crisis I and needed help .

The person who phoned me back from the 111 mental health service was absolutely amazing. I told her all about my diagnosis and how anxious and upset I was about everything. I started to apologise to her thinking that I was doing the wrong thing by asking for help. She listened to me and took me seriously what felt such a relief.  She was very concerned about what I was telling her. She said that she will email and also phone the crisis mental health team up once we have finished our conversation. I couldn't thank her enough for taking me seriously and listening to me. I felt better after the call thinking I was going to receive a phone call from the crisis team.

What is up with the help services. I didn't get a call back from the mental health team and now I have experienced a massive meltdown and I'm not coping very well at all. That's why I've decided to write about my bad experiences with the ILD nurses and the mental health team.