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Meet the Patient

It changed my life

My name is Mary and I just wanted to share a little bit of myself with you.

I loved and was completely consumed by all things active, swimming, running, cycling, horse riding, sailing, walking and circuit training and so much more, I never sat down and was never indoors..a full on fidget pants.

I was 44 years old when I got my diagnosis.

My journey started with a swollen left index finger and  left thumb joint.  I had such an incredible health care team around me that I got a diagnosis within 4 weeks and was put onto an almost perfect treatment program.  I still couldn't move very well (as my feet were under attack) but was assured that the medication would (in theory) stop it from progressing further (so far so good).

Unfortunately, my treatment programme didn’t help my state of mind which I just lost control of...  My movement was so limited I just sat down and gave up.  Thankfully for me I found the Living Well Programme.  At first I was more than a little reluctant to completely engage with the group I just couldn't see how any of them could possibly have any ideas that I would find helpful..... oh how wrong I was.... Being with people who didn't necessarily have the same condition as me but still experienced most of the same symptoms i.e. fatigue, pain and difficult emotions, was an absolute revelation to me, by week 5 we were all having such a good time supporting each other, truly knowing that we were not alone, it changed my life.

Living Well Programme works because it's delivered by people who have attended the course and live with long term health conditions themselves, I do not exaggerate when I say that this course saved my life and enabled me to turn it around, I am very proud to say that I am an Living Well tutor.

 


 

My Success Story

My name is Gary and I am an Living Well Volunteer Tutor. For me the story started 18 years ago, when I first got sick with a virus which attacked my immune system. I continued to work but struggled with poor health, and had several long term absences from work. Then 16 years later in February 2011 after a nasty chest infection I was finally diagnosed with a long term chronic condition which causes me constant chronic pain and fatigue.

By June of that year I had become too sick to carry on working and was signed off by my GP. A month later the medical tests began to make sure there were no underlying conditions. They also started trying out various pain medications on me but all of them failed. No one was listening to me and no one was helping me come to terms with what was going on. It was at this time I became very low, frustrated and depressed. I didn’t know which way to turn. I hit rock bottom and thought of ending it all more than a few times. Thankfully I had my wife and kids who stood by me, supported me and helped me get through these dark times.       

In September 2012 I attended my Living Well course, I have to admit that I was very sceptical about the help on offer, but I went along anyway, I had nothing to lose. It was week 3 before I felt that I wanted to let myself become fully involved with the rest of the group. The tutors were very good positive role models who themselves were proof that the course worked, I guess it was just my own cynicism and stubbornness that had got in the way of me participating fully.  Suddenly I understood the thinking behind the action planning and the problem solving, then I realised that I had been using the techniques since week 1 for dealing with everyday issues. Saying that, I think it was week 5 when the penny finally dropped for me, when all the previous weeks suddenly made sense. To me the Living Well Programme was about me finally taking control. It was about me focussing on the positives in my life, looking at what I can do now, figuring out what works for me. It’s not about focussing on the negatives anymore or dwelling on the things I can no longer do, and the biggest change has been accepting my life, my limitations and my medical condition for what it is now. 

Finding out that there were people out there in the same situation as me really helps, but finding people who are in the same situation as me that also wanted to help people like me was a real eye opener. The use of volunteers to deliver the course makes perfect sense, it’s important as it helps the people attending the course realise that the tutors are there because they want to help, it shows them that they are all on the same journey just a little further along in the process. They are not there because they are being told be there or paid to be there.

Seeing the dramatic changes in myself I asked the tutors if they thought that I could become an Living Well tutor, as I felt it was exactly what I had been looking for to help get my life back on track, whilst helping others like myself at the same time, I felt useful again, I actually felt I had something to offer.

In December 2012 I was interviewed and offered the chance of becoming a tutor.  I finished my training in January 2013 and co-tutored my first course in February, it was an amazing experience and the feedback I have heard so far has really inspired me to keep going and keep learning. I have found both the tutors and the course participants to be wonderfully inspiring people and hope to continue to repay their trust and faith in me.

I can now say I have a much greater respect for the Nurses, GP’s and other medical staff who do their best to help me, and I now understand there is no miracle cure. I was lucky I got referred by someone who knew about the Living Well Programme but I wish I had been referred at the time of my diagnosis, and I hope the powers that be in the NHS realise just what an important and amazing programme they have to offer people like me who had all but given up

In finishing I would just like to say thank you to everyone who is involved in the Living Well Programme whether tutor or support staff. You do make a big difference.

By Gary Oldmeadow