I have so much planned for this site and had hoped to have added much more by this point. I realise now that the slow pace is a part of my condition and therefore its something I must accept. So with this in mind I shall condense a background history of my journey through life so far. Hopefully this will add context to my ramblings and give a taste of topics to come, eventually.
I suffer with CFS/M.E, Fibromyalgia, Late Lymes, with an undercurrent of other conditions, Asthma, PCOS, IBS, Neuro impairment etc…
I believe my illness is the result of contracting Lyme Disease, age 10, this is something I only became aware of more recently, it makes sense and I can track and match the initial symptoms to this time period. Maddeningly, this is something I can not prove after all this time, I can tick off all the symptoms on a list of Late Lymes and refuse to give up hope.
Age 10, when I began to fall asleep in school and had constant viral symptoms and weirdness, I was repeatedly tested for Glandular fever and filled with antibiotics. Back then people had barely heard of M.E, so I struggled through my life undiagnosed and pushing myself. My health impacted every significant milestone, missing much of school, I did well enough in exams, but no where near to fulfilling my true ability. I accepted the easy routes, thinking I was just Lazy, being made to feel that was true. A-Levels were a collapse, fail and retake situation, and so I started university late, which too was a collapse, and extend experience, I limited myself to studying Literature as a more manageable course rather than pursuing my real passion of drama.
My total collapse during this period lead me to thoughts of suicide and thus I was diagnosed with depression. I always felt there was something more to it, but the closest I got to an answer from a number of G.P’s, was the declaration, ‘maybe you just need more sleep than other people.’ With this I accepted I was depressed, I surely was after all these years.
I continued my educational journey, completing a P.G.C.E in secondary English, I pushed and pushed through this and it was sheer determination that got me through. Following on from this, I finally found the life I had hoped for, I moved to the south coast and found freedom in my total independence; I survived a year of teaching and passed my NQT requirements, I truly thought I had done it, that I had beaten depression and all was well. That I spent most of my time not working, sleeping, usually still in my clothes, was just a niggle in the background.
In my second year of teaching, my body conspired against my arrogance and shut me down completely. Finally I was diagnosed with C.F.S! It had a title at least and sounded much better than M.E., which most people referred to as YUPPIE flu, but was still a disappointment, having an illness that few people knew about, with no testing or cure, wasn’t exactly comforting, but it was a start.
I read every book I could on the condition, the internet was not then as it is now, decided to become my own expert on it and determinedly began changing my life around it. During this time I was counselled into believing this was a psychological condition, that I was sabotaging myself by occupational health and decided I must resign my full-time position. I think back in horror at the injustice of it all, I should not have resigned and should have received real support.
In amongst all of this I fell in love and ran head first into the comfort and care of an understanding man. I gave up my life and moved again, it was nearer to family and seemed to make sense, despite all my hard work to get away from the area previously. I worked part-time, in teaching and built myself back up to a point of living.
All of the choices I have made were impacted by my health as was this relationship, once my health improved it became apparent the relationship was a mistake, we were completely incompatible, so off I went back into the world alone, although not for long…
I became pregnant with his child as we comforted each other physically, during our break up period. This was a huge shock, my hormonal problems meant that I only discovered at 10 weeks, my body seemed to have already decided and so I took on the challenge to have and raise this child, knowing that I would be doing it alone, which went against, everything I had ever thought I would do, but well that’s hormones for you, I was nearing 30 and my biological clock was tick-tocking loudly.
This next phase of motherhood, brings us to present day. for the last 17 years I have been a mother first and foremost. There have been many obstacles to over come, I continued to work initially and at other times, but it just became too hard. Surviving the benefit system has been a trial, but since finally being awarded PIP more recently, financial pressures have eased. I love being a mum, I had such hopes for my girl and worked so hard to provide a stable and normal home life.
This cursed condition reared its head mightily, as my daughter has inherited my condition, she spent the last 3 years trapped in her bed, together we are making progress. It has been a hard journey, but thankfully times have changed, the condition is understood and taken seriously, she has had the medical support that I myself was denied. Through her diagnosis and treatment, I have learned to be kind to myself, to stop pushing and punishing and to accept.
So here I am, ready to bare my soul to the universe, to explore and share my journey, for hers is another tale to tell and I am leaving her space to tell it in her own way.
For me, this is a kind of therapy, I hear the words I type for others more deeply than the same words spoken to myself. I aim to give a message of hope, of survival and times of triumph. Despite this difficult background I am still striving forward wondering what new adventures lie in wait.
Thanks for reading,
Chris. x
Living With ME 