What do I do?

For my first blog I am going to briefly explain how I got to where I am today, so here we go… I was born in London, moved to Sussex as a teenager, grew up, got an amazing job, got married to an amazing woman, had three amazing daughters and adopted an amazing dog.  Then I got really sick!

OK, so this is what happened in a bit more detail…

For most of my adult life I have worked and for the most part enjoyed it, I felt I was one of the lucky ones. I had a job that I loved which took me all over the world, meaning I got to do and see amazing things and meet some great people. Life was good.  Until 11 years ago when I was made redundant as the company shut down its operations in the UK.

However, this wasn’t the greatest issue that life would throw at me – for the last 7 years my health that has become the biggest challenge of my life.  During those 7 years I was unable to work. I was told by the pain specialist that it was unlikely I would ever work again, but because he’d used the word unlikely, I felt there was still some hope for me to return to work.  However, within a day or two of the leaving the pain specialist’s office the reality set in.  I could not find any help or guidance anywhere, the Jobcentre, Maximus, employment agencies, even my local MP.  On top of everything I was told I would not qualify for ESA which meant the family facing significant financial stresses too.

It was at this time that my hope and faith in others and in organisations that were supposed to help disappeared and I found myself in a dark place.  I turned to the NHS for help and was referred to mental health services, given some meds to help my mood, and attended a number of group CBT classes.  This all helped a little, but none of it helped me to deal with the chronic pain I was in.  I also joined a local support group, what they were doing was great but it wasn’t my thing.

Then one day I overheard a lady in the Doctors waiting room (hence the title of my blog). She was talking to another lady about a free NHS service called the ‘Expert Patients Programme’ and saying how it had really helped her to cope with her life living with a long-term condition. I didn’t know what was wrong with her but after listening to her, I thought why not give it a try? What have I got to lose?

So when I got home I did some research, I found out it was a six week course for 2.5 hours a week. They were group sessions and made up of participants with many different forms of long term conditions.  Once I finally got the confidence to call, I was booked onto a course and I can honestly say it turned out to be one of the best decisions I have ever made in my life.  The two course tutors were volunteers who were both living with long term health conditions, they had attended this course themselves and found it to be so helpful to them they decided to train and become volunteer tutors so they could pass on what they had learnt.  They were inspiring, positive and compassionate.  By the end of week 3 when I got home my wife said she could actually see a change in me, I was becoming more positive about things, I was smiling more and I was doing more.  On week 5 I filled out the application form to become a volunteer tutor myself.  I felt like I had a future again, that I could be useful and that maybe I could make a difference and help others. I also made it my long term goal to get back into employment.

That was 5 years ago, I am still a volunteer tutor and I now work part time for the service as well.  The staff and all the participants have kept me going and keep inspiring me every day, especially at the moment whilst I’m unable to get into work due to a flare up of my condition. This time though I do not feel helpless as I can draw on my self-management skills (learnt on the course).  I don’t feel scared and alone, because I have the most amazing colleagues who are there for me and understand what I am going through. I also keep in my mind all of the amazing participants I have met whilst tutoring courses, these people inspire me to never give up, to remain positive and to always look for the best in everything I do and everything that is happening.

The posts I will be writing for the Blog will be about me sharing how I deal with and cope with what is happening in my life, the good, the bad, the funny and the sad.

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