2018 brought many challenges and hard-won victories for Rose, but as the year draws to a close, this M.E. Warrior is learning to be kinder to herself.
Ed: In this 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.
November 2018 marks 20 years of my living with severe M.E, and it certainly is no call for celebration. I was a girl of only 11 when I first got ill with a bad virus. I remember, after such a long absence from school, having to return with less energy and not understanding why. As a child, I didn’t realise that something was wrong, and could not comprehend why everything was so much harder for me. So much time off school, and later off work, with flu-like illnesses. Judged, ridiculed and even reprimanded for so much absence, until eventually another bad virus rendered me bedbound.
Today, as I glance in the mirror, I wonder who the exhausted lady is starring back at me – my past outward reflection was much more pleasing.
I may not be as glamorous looking as I once was, but if I look deeper – inwardly to my soul – I have grown, and that is true beauty that does not age. My self-portrayal has altered, and I now value my worth in a different way: not based on what I look like, but based on who I am. A strong warrior.
That said, being strong is a huge expectation from others, and from myself. I certainly do not feel strong all the time. I more often feel very isolated and lonely. I think the warrior in me needs to be kinder to me, and perhaps that will encourage better days.
Right now, though, I find myself reflecting on what has been a very tough year. In the summer, my personal assistant resigned suddenly, breaking the contract of notice, blaming my mental health, which really hurt. I get low, like most with a long-term illness, but to use that as a weapon was unjustified – I am stronger than most, and more positive than many who aren’t even ill, so it felt harsh. I trusted my PA for almost a year-and-a-half, and her betrayal came as a real shock. I stumbled in the dark for some time, but reached out for some talk therapy, which helped me deal with the loss.
Despite being bruised and utterly exhausted from all I’ve endured this year, I hold some victories. I stood up to the head of Adult Care at Social Services with an email of complaint, and made changes – not just for myself but for others. I received copious written apologies regarding my experiences dated back to 2012, including my recent ordeal with a student social worker (see InterAction 99 p 25). I also asserted myself with regard to the poor boiler installation, and got them to rectify the issues.
Whilst all of the above impacted on my wellbeing and led to episodes of very low mood at times, I am trying to focus on my achievements, not my wounds. I have used my innate power of voicing for the vulnerable, and that is something I am proud of.
A more gentle warrior
I know the warrior part of me is sometimes hard on the part of me that feels vulnerable and unloved. I guess I lack patience with myself and want to move forward quicker. But if I do not acknowledge the vulnerable part of my being, then I am not loving myself, and I owe it to myself to be present and accepting. Even warriors need time to be gentle with themselves.
That’s why, as another Christmas approaches, despite finding myself wishing once again that I was not alone, I am trying to view the festive period as a time for rest and enjoyment of some simple pleasures. The fairy lights and tree ornaments always make me smile.
If you too are facing Christmas alone, please join me (“Fairycats”) and others on the M.E. Friends Online forum (www.actionforme. org.uk/forum). If you cannot get online, know that I am thinking of you, wishing you a peaceful Christmas and a happy New Year.
Love, Rose xxx