Ed: In this new regular feature, Rose opens the pages of her diary to provide a frank insight into a life affected by severe M.E. It is a tough read at times and some readers may find it upsetting, but we feel it is important that the voices of people with severe M.E. are heard.
I so wanted to embrace a New Year with hope and positivity. I was glad to leave the old years behind me. I did not expect January and February to be so challenging.
Living in private rental means I feel unsettled and anxious much of the time. I really want to feel anchored, to feel safe and at peace in my home, but my landlord is one that likes to hold his position of authority over me as a vulnerable adult, which is extremely intimidating. I spent months not knowing if he would renew my lease, which made me very anxious, provoking disturbed sleep with vivid nightmares of me being homeless, depicting me alone in the freezing weather in my wheelchair.
To make matters worse, one of my carers suddenly departed, without giving me any notice. I felt capsized, tormented and alone. No family to comfort me, no partner by my side, no one to lean on but myself. Confined to my bed and my home, I became fearful that nothing was going to change, despite my positive outlook. I worried for my mental health.
Nonetheless, I realise that spending so much time alone has made me stronger (since my ex and I separated). I am forever told that I am strong (even when I do not feel it), and if I reflect over the last decade, I can now recognise how far I have travelled. I have grown, despite the M.E keeping me stationary. I have mastered so much and endured considerable challenges over this span of time, despite the severity of the M.E.
Love is everything
I can’t be strong every day, though. Mother’s Day was particularly a difficult one this year, as I was haunted by nightmares of my mother, who had abandoned me as a young girl. I long to be a mother myself – I feel so cheated, becoming ill so young with M.E. and not having the opportunity to have a child when others had. It seems such an injustice to me that my own mother abandoned her children – especially as I want to care, love and protect them.
I worry that I am being unrealistic wanting my own family when I am so ill, but I need to hold onto hope, as I long to adopt and foster children one day. I know having loved ones would help me so much, because I have so much love to offer – being alone for so long has taught me that love is everything. A chronic illness is harsh, but dealing with a chronic illness alone is unforgiving.
However, as spring fast approaches, with its promise of new beginnings, I really do believe the days will become brighter. I’m looking forward now to the new, because I’ve realised I am braver than I ever believed, and I now recognise my self worth. I will probably still doubt myself, but that makes me human!
I am also looking forward to starting a new project, helping other people with M.E. to share their stories for a new blog, as it is a positive, worthy cause and something I can do a little at a time when I feel well enough.
Summer, with the hope of warmer weather, is so inviting. I will be able to sit in the garden, which is so welcome when you are housebound. To just be, surrounded by nature,feeling the sun on your skin and seeing the beautiful flowers come into bloom, reminds me that there is always hope that positive experiences will come into my life this year; I hope so, I really do.
Rose is inviting people with M.E. to share their stories for a new awareness-raising blog. To find out more, email Rose at M.Ewarriors@btinternet.com