I have always been someone who struggled with my tiredness, almost as long as I can remember. But it was after having my second child, and facing my dad's diagnosis of stage IV Lymphoma around the same time, that things just didn't seem right. At first it was put down to post-natal depression, however my tiredness was worse than ever and I was struggling to cope. Finally, after test after test for anaemia, thyroid problems, low iron and assorts of other ailments, I was referred to my local CFS clinic for diagnosis.
In one sense being diagnosed was a relief, as finally I had an answer. Yet that answer was not an easy one to accept as there is no cure for CFS. Whilst some do recover, for many it is part of life and can merely be managed. At its worse it can leave people bed-bound and unable to live their lives without constant support and help. All the clinic could tell me was I had probably had the illness since I was a teenager and that they could help me to put measures in place to manage my low energy levels and boost what little energy I have.
But being a mum of two children under two, it seemed an impossible task. I needed to pace my time, which meant doing a short burst of 'high energy' activity, followed by a rest or at least twenty minutes - try telling a nine month old that! They also advised me to practice relaxation and taught me methods I could do at home. Finding even five minutes of silence in a day certainly proved a challenge and needless to say I rarely have chance meditate!
The guilt I felt back then, and still do, was unbearable. How to make my two year old little girl understand why mummy can't take her to the park, or play with her for longer than five minutes? I was irritable from being so tired and often snapping at the children; I had no energy to cook nutritious meals and the housework fell completely by the wayside.
In the end I had to put things into place that I really didn't want to. My little girl went into nursery from eighteen months and by two she was in two full days a week, increasing to three full days when she was three. My little boy also started attending nursery from only one year old. Knowing I was sat at home whilst someone else cared for my children is one of the toughest things to accept, and I have never felt so guilty. I have recently taken on a cleaner as the state of the house was making me even more low and not helping my mood.
Getting others to understand was also a huge challenge. CFS is known as an invisible illness as it cannot be seen and is often disbelieved. I've heard it all - 'I get tired too,' 'if you just did some exercise you'd feel better' 'too much sleep can make you over-tired'. I used to get so angry, it was as if people felt I didn't want to live my life - of course I'd rather be doing things rather than spending my life sleeping! It has taken a long time for even my family and close friends to understand as much as they can and I know they still find it difficult.
The other person who has been several affected is my husband. He has been a pillar of strength throughout an extremely hard time, and I see every day how much strain he has on his shoulders. He works long hours to provide for us, often takes over with the children when he gets home from work and cooks tea for us every night. Most weekends he is the main childcare provider and he rarely gets any time to himself. It crushes me that my illness affects him so badly, yet he has always been there and I couldn't have done it without him.
When people ask my what my role is, I say stay at home mum, but I always feel like a fraud. Stay at home mums are supposed to look after their children, educate them, keep up with the housework, prepare meals and keep the house running whilst their other half provides the financial support. At the moment I hardly fulfil this role. All I can do is try my best to be there for my family as much as I can. On better days, the children and I get out and about and hopefully that time together makes up for the times I am in bed all day. I pick them up from school and nursery nearly every day and I am proud I am there to see their smiling faces as they run out of the gates. And when I can't be there physically I am there behind the scenes to capture it all in my blog. Hopefully they will be able to look back at it all and know mummy was always there for them, even if it wasn't always physically. And maybe by experiencing a parent with an illness, they will be more sympathetic to others themselves. All I know is whilst life is difficult, I wouldn't change my family for the world. At the end of the day, they are the reason I get up every day and continue to fight this debilitating condition. One day I WILL get better.