Long Time No See

Weston for blog

I’ve not written a post in a long time and I am now hoping to return a little more regularly; providing I can think of enough interesting and informative things to say and of course if my health plays ball. I have a few ideas in the pipeline, so we shall see how we go.

Where have I been? Nowhere really, I’ve been settling into my new home, which I moved into last year and trying to get to grips with both my physical and mental health. I had a brief spell of doing a bit better and started doing some volunteering again, which was great while it lasted. Then my physical health and energy levels dropped off again.

It’s a cruel hand to be dealt with, but sadly all too common with chronic illness. You get a period of doing a bit better, having a little more energy, so obviously you want to make the most of it and do a little bit more. Then, just as you get a taste of what a road towards recovery might feel like, BAM! it’s gone, you’re back to where you started, or maybe even further back. It’s like a real life, never ending, game of snakes and ladders!

There are some positives from the last year, gosh has it really been that long? “A” and I managed to get a few days away on the coast, for some much needed sea air and days of doing nothing. A lovely opportunity to meet new people and make some new friends popped up. And I’ve had quite a journey in getting a better understanding of my mental health. All too often physical health issues and mental health issues come hand in hand, they’re like two inseparable friends. Commonly one can cause the other, sometimes they arrive independently of each other, but either way, they always have an influence on each other, whether we realise it or not.

In a future post I will talk more about my mental health, when I am ready. And I will certainly share with you my joy of meeting new people that I not only share a hobby with, but also feel I connect with on other levels.

Later this year I will also share with you my charity fundraising plan for next year, for many years now I have tried to do something to raise money for charity each year. Thinking of ideas has been more challenging since I’ve been ill, but I have come up with my hardest challenge yet for next year which hopefully shouldn’t affect my physical health.

Until next time…take care.

B x


Who Am I?


Recently I attended a self-awareness course, run by my housing association. The course was called Skin Deep, with different topics each week. The first of which was entitled “Who Am I?”.

This session hit a very raw nerve, as I’m still finding it hard to come to terms with the loss of the person I was before becoming chronically ill and I’m still trying to figure out who I now am. Hence the name of this blog, “Grieving for Me Because of M.E”, because I am trying to work out how to grieve for loss of “me” because of M.E.

Before I became ill I was Mum and carer to my son, who has Cystic Fibrosis. I was a volunteer at my local Citizens Advice, as a fully trained gateway assessor, adviser and an assistant trainer, as well as setting up and managing their social media. I also started up and ran the quarterly twitter event, called #CABLive, which highlights the varied and vital work of Citizens Advice outlets around the world.

In addition, I organised large Salsa parties a couple of times a year, raising thousands of pounds for various charities, including Birmingham Children’s Hospital and Breakthrough Breast Cancer.

In my “spare” time I enjoyed Salsa classes (and helped start up local classes), swimming, walking, Pilates, kickboxing, Zumba and gardening. And I once thoroughly enjoyed doing a skydive, to raise money for the Cystic Fibrosis Trust.

But that all changed in September 2012 when, after nearly 3 years of battling through it, my illness struck me down and took almost all of that away from me. I am still a mother (although he is now an adult, in good health and has flown the nest,) but the rest is gone!

As you have probably gathered, I was fit, energetic, passionate and hard-working. All that remains is my passion, but that’s almost cruel when I’m not left with enough energy and stamina to do anything with it!

My life mainly revolved around helping others and those closest to me feel that not occasionally putting myself first was my downfall and very instrumental in me becoming so ill. Yet now I’m the one who needs help, but it’s so damn hard to ask for and there’s precious little available.

So who am I now?

I’m still Barb and, ironically, energetic is still the first adjective that comes to mind if asked to describe myself! I still get enthusiastic and passionate about things, but ultimately this leads to frustration. I still push myself too hard at times and this can be extremely detrimental to my health. I still want to help and volunteer, yet am still to learn how to put myself first and ask for help instead of offering it!

In truth, I still don’t know who I currently am and what my place in life is. Yes I’m a mother, a daughter, a sister, an auntie, a great aunt, a cousin, a niece and a friend. But I can’t shake the feeling that I’m currently not able to be any of those things in the way that I would like to be.

Who am I? Currently, I am lost, but hopefully on a journey to find myself again one day.