Who Am I?

skydive

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.

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Be Grateful!

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Hate having to get up early to go to work 5, 6 or even 7 days a week?

Be grateful that you can!

Hate walking to the bus stop in the rain? Or driving in rush hour traffic?

Be grateful that you can!

Hate dealing with awkward customers, difficult colleagues and/or demanding bosses?

Be grateful that you can!

Hate having to prepare and cook a healthy meal for your family after a long day at work?

Be grateful that you can!

Hate doing the housework, shopping, washing, ironing, washing the car, mowing the lawn, digging up weeds?

Be grateful that you can!

Wish you could spend all day at home, doing nothing but watch everyone around you doing these things for you?

Be grateful that you can’t and that you don’t have to!

While you’re moaning about the day-to-day mundane tasks that you have to endure, there are thousands of people, like me, that are stuck. We can’t do even the simplest of tasks without help or severe pay back in the form of a chronic fatigue and pain that you hopefully will never have to suffer!

We’re not lazy, we’re not depressed (for those that are depressed it has been caused by their situation, NOT the other way around). We DO want to live a normal life, we DO want to go out to work and earn our own money, we DO NOT want to be dependent on benefits, family, friends and carers.

What we deal with every day is NOT in our imagination, it is classified by the World Health Organisation as a neurological disorder under Diseases of the Nervous System, as are Multiple Sclerosis and Parkinson’s Disease.

We know it is hard to understand an illness that has different names, an unending list of symptoms which can vary from person to person, from day-to-day and even from hour to hour. But it is even harder for us to live with it, to find ways of coping or living some kind of life. All without knowing when the suffering will end, or if it ever will!

If you know or meet someone who has ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or PVFS (Post Viral Fatigue Syndrome) please don’t just assume they are lazy or a bit tired and just being a wimp. Ask them about their illness and how it affects them, really listen and do your best to help and support them, even if you don’t fully understand.

We are all friends, colleagues, mothers, fathers, daughters, sons, wives, husbands, siblings or partners that once had a full and active life; a life that has now been snatched away from us for no reason or fault of our own. None of us know if we will ever get our lives back and we are trying to do the best we can to make the most of what we can do. Don’t judge us if we push ourselves a little in order to do something “normal” for a few hours. We know we will suffer for it, but usually view it as worth it; even though the payback often lasts longer than the small amount of fun or normality! Having people around us that do their best to understand, empathise and make life easier for us, but without pitying or patronising us, makes the daily suffering that little bit more endurable.

Please be patient with us and be grateful for what you can do and make the most of the life that you have, you never know if or when it could be snatched away from you!

This was first published as a note on Facebook, in October 2013, under my married name, Barb Bayton.