Muddy Stories - 'C2'

Foreword from C1 (Claire CEO Muddy Care CIC)

This is the story of C2.  C2 is a participant on our Muddy Care Mini-Pilot story.  Again this is an example of the repetitive challenges that people with chronic conditions face.  It’s not about finding a cure because more often that not there is no cure for our conditions.  It is about learning to live with our challenges as positively as we can and adapting life so life is easier for us.  However, what I do believe is we can help stabilise our conditions.  It requires persistent, daily efforts to implement and carry out lots of management strategies but it is possible. And what I know is C2 tries her hardest to do just that, stabilise her health.  Thank you so much for writing this C2 and for your openness. 

C2’s Story

The 10th of May 2015 was a sunny and warm Sunday, only to be destroyed by a single phone call. My sister saying, ‘Dads dead...so sorry sis, Dads dead!’.

His uniquely amazing, warm heart had just stopped. He had been pottering happily around his little cottage, preparing things for our first family holiday at ‘la maison’. a previously derelict property that he had spent the last few years renovating. Mainly on his own. Myself, my son, my sister and brother, were all due to go out in a couple of months to celebrate his 75th birthday. I had been expecting him to ring me, to start making travel arrangements. In July we all braved it and celebrated with silly glow in the dark accessories and played games. He would of loved it!

From the day that my sister rang me, instead of my Dad, I was ill and my symptoms did not stop. So I went to my Doctor who said, ‘ I think it is Ulcerative Colitis (UC), but we’ll send you for some tests’. I had no idea what it was. He said that there is no known cause and no known cure. ‘Shit!’ I thought (no pun intended!).

Luckily a specialist IBD (Inflammatory Bowel Disease) nurse was starting a local monthly clinic. So I became a regular! In October she confirmed that I did indeed have UC, after performing a ‘flexi-sig’. (For those of you who don't know, they put a camera where the sun don't shine!).

I was given an information sheet. Basically, UC is an incurable auto immune disease that develops in the colon and rectum. It can cause; pain, diarrhoea, cramping, bleeding, mucus, internal ulcers, fatigue, brain fog, low iron levels, weight loss, feeling sick, heart palpitations, joint pain, swollen eyes, mouth ulcers, generally feeling unwell and I also get dizzy, clumsy and have occasional deep flaky skin and sore patches. Trust me!

I was put on medication for life twice daily and have others that I need to take if my symptoms worsen. If my ‘flare’ gets too bad, I have to go onto steroids. I have had annual flares so far, late last year becoming so ill I was hospitalised twice for a few weeks, with a few days ill at home in between. I was very unwell for about four and a half months. Unfortunately, being made ‘redundant’ from my full-time job in December whilst off sick. With no help from the Government, it was a real struggle! My usual routine was shot and I had to set myself small goals to get back some kind of normality. Good job I’m a ‘glass half full’ kind if girl! (Also generally positive and determined just like my dad). He had many, many health issues and was determined to never give up and plod on and do the best he could...which was very inspiring!

I was eventually well enough to start looking for work in January and finally started a part time cleaning job in March. It’s not always easy. I have my bad days and I have to juggle quite a lot of other things now too and I do find it hard to rest more as strongly advised...but I’m trying! The endless energy I had, has gone and I have had to learn to accept that and make the best of what I am able to do and when.  I have had lots of different tests and procedures in various hospitals and have recently been referred to another specialist, at another hospital. It is thought I may have Crohn’s disease, but time will tell.

I sometimes wonder if my dad left me this ‘gift’ to try to slow me down! I often smile (grimace) and say ‘Aww thanks dad! Love ya loads!’

My journey continues after a few unexpected diversions and I’m on a new path looking for ‘my silver lining’ .....🙂