Women's Health Stories

Being quite young and having Chronic Fatigue Syndrome is very hard because I constantly feel like I am not what I'm meant to be, I'm wasting time and this is supposed to be the best time in my life. I should be out in pubs and clubs with my friends, working towards a career that I trained hard for and enjoying my nieces and nephews with my husband. But since early summer 2010 my life has been anything but all the things you would have expected. Two months after getting the job I had always wished I would have my Dad had a heart attack right in front of me, and a week later I got a flu-bug that I never recovered from. I was bed bound, exhausted and felt like my whole world had been turned the wrong way up. The experts call this “Severe-Onset Chronic Fatigue Syndrome” and very few people ever recover much quality of life.

Three years later I am still significantly disabled but specialists have said that I have improved more than they thought possible and they believe my positive attitude towards regaining as much of my life as possible whilst still accepting my “limitations” is what has brought me this far. ME or CFS is far more than exhaustion and unrewarding rest, I personally suffer with migraines, sleep disturbances, balance problems, joint pain, muscle weakness and wasting, light and sound sensitivity, simulation sickness, bowel and bladder problems, compromised immune system, the list feels endless. The bottom line is I had to make a very important decision three years ago; to sit in my chair falling asleep every few minutes and staring at the ground, being carried to the bathroom and starving because I had no energy to eat or I could decide to stop distancing myself from how much pain I was in and get my life back. I looked at my niece Rosie playing with my, now, husband David. They were laughing and I thought that is worth living for.

There have certainly been relapses and set-backs and there are still days when the pain I’m in is too much but I can easily say the person who saved my life is David. He helps me do a huge manner of tasks without thinking twice about it but he makes me laugh every single day. It can be very isolating for us but if something is very important we find a way round it. Even getting married, the happiest day of a girl's life, was greatly affected by my illness. David and I went off on the quiet in December 2012 with just our photographer and his wife as witnesses because I couldn't handle anything bigger, and if I had been in a bad week I would have been in a jogging suit and a wheelchair. Luckily it worked out well and I managed to wear my dress and even though I was very tired I managed to walk up the aisle! It felt like a massive triumph, as my Mum had been diagnosed and treated for Acute Myeloid Leukaemia in the previous year and a half and I had suffered a complete relapse of my condition. That I was able, only a year later, to enjoy even a very quiet wedding day was almost a miracle. The best day of my life, my wedding day, could even be viewed as very isolating because I couldn't even invite or tell my family. We told all our family on Christmas and Boxing Day, and to their credit, even though it was very shocking the majority were very happy for us.

I can’t say that I’ve had loads of friends rally around to help me because that would be a lie, we have one friend we call “Big” Rosie (because of my niece “Little” Rosie). She has always been there for us and given as much support as possible, even though she lives a few hours away in Essex. David is quite young to be a carer and doesn’t really get the time to go out and meet new friends. We have lots of family who support us but life can still get a little lonely. I just hope that if one person reading this article feels the same way that they will know they aren’t alone, and that you can have a life even with CFS.