Today is ME Awareness Day…..

….so the perfect day for my first blog post!

This blog is first and foremost for me, to help me process all that I have been through in recent years and to hopefully enable me to properly grieve for me and work out how to move on with my life, with the limitations that I am currently living with.

It sounds a strange concept to grieve for someone that hasn’t died, but we have all experienced the loss of someone who is still alive, whether it is from a broken friendship or relationship, or how illness or trauma has changed a person from the one we once knew and loved.

Before I became ill I was a very positive, energetic, passionate, enthusiastic person, who thrived on helping people, being busy and having at least one project on the go and at least one other in the pipeline. Ill health has robbed me of all these things, and three and a half years on I am still trying to come to terms with that.

Initially I believed I coped with the diagnosis very well, I accepted that this was not going to be a short term illness and that I had a very long road ahead of me. I was mindful of the fact there were people far worse off than me and I was very thankful that the people around me believed that I was ill and not just suddenly lazy. I maintained a very positive attitude and was determined that I would be one of the fortunate few that would, one day, make a full recovery. It was this positive thinking and mindfulness that kept me going; that and the loving support of those closest to me.

This is not to say that adjusting to being so ill was easy for me. I was never one to sit and do nothing; prior to being ill I was constantly multi tasking and I seldom just relaxed, without beavering away on something else at the same time. Knowing that I had weeks, months, maybe even years of having to rest and allow my body to recover was never going to be easy for me to accept.

But I was kept fairly occupied in the first few years, with battling the DWP for sickness and disability benefits and numerous doctors and hospital appointments, for both myself and my son (who has Cystic Fibrosis). I’m sure we counted nine different hospitals in nine months at one point! There are no diagnostic tests for ME/CFS and the huge variety of symptoms overlap with many other illnesses and diseases. Therefore it is necessary to rule the other things out, so I was referred to many different specialists, in order to explore different sets of symptoms, to ensure that they weren’t indicators of other problems.

In between all of these appointments, when I was cognitively able to, I was doing as much research as I could, to learn everything there was to know about my condition and what I might be able to do to get myself well again.

Now, over three years later, after many forms, letters, appeals, tantrums, breakdowns and tears, I have finally proven to the DWP that I am not faking it, I am really this ill and my mobility is this much compromised, so the sickness and disability benefits that I am entitled to are now finally in place. I have seen consultants from many different specialities, had numerous blood tests, x-rays, scans and procedures, learned far more about various organs of my body than many people my age, had a little input from a physiotherapist and an occupational therapist and learned that is now it, the NHS sadly does not have the knowledge or resources to help me any further. There is no cure, there are no answers and there is no universally recognised treatment. So, despite how ill I am, how much this illness hinders my mobility and my ability to do simple everyday tasks, I am now simply just under the care of my, thankfully, very empathetic and understanding, although seriously over worked and stressed, GP.

My son flew the nest nearly two years ago; to follow his dream and study music and my long-suffering partner left me shortly before Christmas. So now I find myself living alone, with no treatment, little support and help, trying to work out who I am now , what my future holds for me and what is my next step.