sometimes you get what you're given and then it's all gone

Today a guest blog from someone else I work with who I have connected with over mental health and being open about who we are (it's amazing you should try it).

This is part of Lucy's story, I learnt a lot and am grateful to her for sharing.....


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I don’t often post something so personal,  but as it is Millions Missing week this week and Mental Health awareness week next week it feels important to say something about the reality of life with ME/chronic fatigue syndrome. 

I have had ME/chronic fatigue syndrome for 5 years. I felt so well for a while that I thought I had recovered, although I never got back to my previous activity levels. But then last summer I relapsed. 

I am so fortunate that my symptoms are mild. But the impact on our family life is still enormous. I can work part time. I can see friends and go for walks. But I miss running, cycling and swimming. Camping and walking weekends with the kids are mostly a memory. I rarely go out in the evenings - to choir, to yoga or just to the pub. 

I can do some of this....sometimes. But it all requires planning. I plan every detail of my week to allow me to stay as healthy as possible. To do anything extra means I need to start planning days in advance and plan time afterwards to recover. It means the house will become untidy, we will put off the decorating again and I need to ignore some of the housework or other jobs that feel important. Spontaneity feels impossible. 

Over the last year I have also dealt with the emotions and uncertainty of supporting a teenager with mental health problems as well as a mother who was dying of breast cancer. It’s been almost impossible to find the space to plan to make fun things happen. 

I am so lucky in so many ways. My husband is great at keeping things going. I have the luxury of working part time for an amazingly supportive employer. My friends listen when I just need to talk. I have a roof over my head and we have enough money. We have the support of CAMHS and the school. My step-dad was there for the day to day care of my mum and the team at the hospice were also wonderful. 

But this illness still feels incredibly difficult. Sometimes it is impossible to tell whether the fatigue I feel is as a result of my ME/chronic fatigue syndrome or if it is mental health related due to the amount of stressors in my life. I continually wonder how much I can do to be an active part of my family while not putting my health at risk. There is no science to help me work out what I should do, and while the NHS is great at all sorts of things, I’ve had virtually no support with either diagnosis or treatment.....I’ve just had to figure things out myself. 

So I listen to my body to help me decide what I can and can’t do each day. I do everything I can to ensure my body and mind are as healthy as they can be and that my immune system is working as well as possible. I watch what I eat and drink, I make sure I relax and have fun, I get fresh air and I rest. And importantly, I try to avoid pushing myself to carry on when I’m tired as I know this can make things worse. 

I try my hardest to stay positive. I try to make myself believe that I am doing enough to stop me getting worse. I even quietly harbour the hope that one day I will recover in full. There are times that I am able to focus on the good things in my life and the choices I am still able to make. 

But there are times when it’s hard not to lose hope. When I’m so exhausted that I lose the positive, bubbly part of me. I find myself dragged down by the frustration of all I can’t do. By the sadness over all I am missing out on. And by the uncertainty about whether this can and will get better. 

People often ask me what they can do to help. So here goes..... 

Please take time to understand, to hear the stories of those who have ME/chronic fatigue syndrome. If you know someone with ME/chronic fatigue syndrome, find a way to spend time with them or to bring some fun in to their life. And share what you’ve learned with others. Help us to break down the misconceptions that are out there. 

As our fatigue means that many of us use all our energy in just surviving, it can be hard to advocate for ourselves..... we need you to amplify our voices. Please help us by telling our stories and to joining us in calling for more research into diagnosis and treatment.

Thank you.  Lucy