• Emme - My Story

    I was a very professional single mother of three children. It had taken me years of studying at college and then Uni but the day I got my degree was the proudest day of my life. All the hard work of doing course work at all hours had paid off..... I took a few months off just to be a full time mum, taking my children abroad and spending quality time with them - after all the years I had been studying and dropping the children off at child care meant that this was a very special time to us all....

    After a few months I decided to apply for jobs and couldnít believe it when I got the job of my dreams! I spent every working moment giving my all to my working profession. Every morning I would get my children up and drop them off at the child-minders. I always looked forward to the weekends when we could have breakfast in bed and fun and games. I thought I had a wonderful life.

    I had always been a very active young lady, going to the gym a couple of times a week and so I joined a well womenís clinic. I was 100% fit they would say to me - I had never had a single day off college or work due to ill health, only taking time off if one of the kids were sick. I felt blessed and very lucky indeed.

    That was all to change in May 1997 when my brother was diagnosed with the big C. He was told it was in the secondary stage. I can still see the look in his eyes, he was horrified. I had and always had been his main support - a twin thing I guess. We were so very close and yet this was to push both of us to a place of darkness. We asked the consultant what his chances were. We were told there were two choices - either six months to live or we could try for a bone marrow transplant. I remember it so well. My twin sobbed uncontrollably begging me to help him by donating bone marrow. In the meantime, the consultant set a private appointment up to talk to us both thoroughly itís not one of those decisions you should take lightly. I spent a few nights sobbing thinking about all sorts of things, the main one being what would I do without him?! It was clear to me that I had made my mind up that I would be his donor no matter what. I knew that if the shoe had been on the other foot he would do the same for me. When the day arrived for the private consultation, I told the consultant he needn't spend time going over it all, that I wanted to help him now. After all, every minute of every day that passed were days off his clock ticking.

    When the day came, I was called in for all sorts of tests to see if I was a match. I couldnít believe that we would have to wait five days for the results. Friday finally came and at 5pm I was sitting with my twin in the oncology ward when the consultant walked towards the bed shutting the curtains. I thought that it must be bad news but with a smile he told us that my bone marrow was a 100% match. That was the first time since my twin had been diagnosed that I saw a glimpse of hope for him. The day, date and time were set. I hadnít even bothered to read about his condition. I really am not medically minded, I just wanted it done and dusted.

    When the day finally arrived, I booked a few days off work. Kate (known to you all on here as Brandy) was by my side. My twin had been moved to the bone marrow unit and had been prepared to receive my marrow. I remember the doctor saying count to ten and the next thing I knew I was in recovery being as sick as a dog and feeling so weak. Later that day they moved me to the oncology ward. I felt rough and couldnít sit up without fainting. My twinís consultant came to see me and told me I needed a blood transfusion. I stayed on the oncology ward for a few days and didnít feel at all well. The consultant said I could go home and that in a couple of weeks I would feel better. Who was he kidding?!

    To put the icing on the cake, a month to the day after the transplant I was rushed to hospital. I needed an urgent hysterectomy which went wrong - they had punctured my bladder. I ended up back in theatre. From that day I didnít recover. I spent weeks in the hospital and could barely move feeling pain surging through my whole body.

    The consultant ordered so many tests that I felt like a pin cushion. I had a bone density scans and all sorts before I got the verdict - Rheumatoid Arthritis, Osteoporosis, Fibromyalgia and M.E. Most people have to cope with the knowledge that they have one illness but I didnít understand any of these conditions and how they would impact on my life. I had that long journey to face and a battle...

    I was moved from that hospital to another and if I am to be fully honest here, I had given up the will to live with chronic illnesses and I couldnít see beyond this insurmountable barrier to the life that I had known before.

    Eleven weeks later and around the clock care from a consultant who took it upon herself to care for my well-being, helped me to address my fears and to come to terms with my new way of life. My thought process had to be changed - will my decisions fuel or drain me? I had to have help with personal care which really did distress me. Who the hell wants to be washed and fed? A simple task that I had always taken for granted was now beyond my capabilities. I felt squashed. For every little step forward my energy reserves went back to zero. My whole body felt powerless I had no drive at all.

    I avoided family and friends looming questions as I hadnít got the answers. My consultant however wasnít going to allow me to be self-defeated. He wouldn't let me be weak or give in to my illnesses. With the help from her and the other staff, I slowly started to address the physical and emotional roller-coaster of having to learn the new techniques and keys to living with chronic pain every day.

    Gosh, all of that seems a whole life time ago these days. I try to manage my illness, sometimes well, sometimes not. What I have learnt is to listen to my body and taking scheduled naps when I need them. Even when I am so unwell that I canít get out of bed, I manage to exercise by stretching my legs so that I donít have a relapse.

    Itís been a very tough battle it really has and still is. My children found it extremely difficult that their Mum was always unwell. It was a shock for them - letís face it, I had a very good job, I had never been unwell and only went into the hospital to give my twin my bone marrow. I ended up getting a lot more then I bargained for.

    I thank the Lord above that I have a beautiful understanding soul mate who cares for me 100%. She dries my tears when I canít stand the pain and looks after every aspect of my personal care. She is a blessing in disguise and many of you know what a brilliant cook she is! What more could I possibly ask for? Not pity thatís for sure! I have chronic illnesses but I also have a life, good friends and a excellent family network.

    Thanks for reading Emme xxxxxxxx