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.

“What do you do all day?”

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I am often asked “What do you do all day to keep yourself occupied?”

Well, I don’t actually have as much free time as many might think, because every little task takes me longer than a healthy person and necessitates frequent rests; the simplest of tasks can be exhausting for me. For example: I have a shower, then need a rest, I get dressed then need a rest, I make and eat breakfast then need a rest, I wash up then need a rest….you get the picture. So just the daily basics take up a lot of my time!

I do have a wonderful lady who comes and cleans my home for two hours every fortnight, but everything else I do myself. I cook my own meals, washing, ironing, washing up dishes etc. It’s surprising how much time all of these things take up when you have to pace yourself!

Having limited mobility and energy does drastically reduce what I am able to do and having been at home ill for three and half years now I do still struggle with how to occupy my time without using up what little energy I have.

There may be some people who are content with watching TV all day, but surely not for over three years! I would feel the grey matter trickling out through my ears if I were to spend all day, every day watching the likes of Jeremy Kyle and Bargain Hunt! I also still really struggle with just relaxing and watching TV; I still have the constant urge to be “doing something”.

I’m not saying that I don’t watch TV, as I probably do still watch more than the average person, but it is far from my only occupation! I enjoy listening to the radio, in particular Radio 2; I think I’m old enough to be able to admit that without flinching! I enjoy the wide range of music, presenters, guests and topical debates and it takes less energy from me than reading a book can do.

Concentration can be a real difficulty for me, so I actually read less now than I did before I was ill and had a busier life! This is where word games on my phone are useful, they are mentally stimulating, but I can dip in and out of them, so no need for long stretches of concentration. It’s the same with writing this blog. I type up ideas as and when they come to mind, then add to them bit by bit when I am able. It usually takes several stints over about a week to put together each post. Maybe I need to try and make them shorter?

Wildlife is a great passion of mine, so watching and photographing birds, animals and insects in my garden helps to keep my sanity. Most weeks I also count the birds visiting my garden, as a citizen scientist for the British Trust of Ornithology.

Spending about 80% of my time at home it brings me great joy to watch the wildlife out of my window. It doesn’t completely make up for not being able to go out and lead a normal life, but it certainly helps. When life has dealt you a bad hand you have to make the best of it and find joy wherever you can.

Another thing that has helped me to keep sane is teaching myself to crochet, through books and YouTube videos. Now that I’ve mastered the basics I can make many things whilst sat in front of the TV, arms supported on a pillow and without needing too much concentration. Thankfully crochet is very forgiving, so when my concentration is severely lacking and I make mistakes it is easily undone and done again correctly. It has been wonderful to discover something productive I can do that doesn’t tire me out! I usually have several different projects on the go, with varying degrees of complexity. So I can choose to work on what my brain and hands can cope with on any given day.

I am one of the lucky ones that is able to go out and socialise, but not as often as I would like and I do have to pace myself carefully. At best I can manage two outings a week, leaving the days either side for rest. The majority of the time it is lunch out with “A” for a couple of hours, occasionally it will be to the cinema or theatre. Going anywhere new to me or somewhere very busy or needing a bit more walking than I’m used to, or stairs, takes a lot more energy out of me. These trips are planned even more carefully and necessitate more rest days before and after.

Although going out of the house takes up a lot of my energy and can take me days to recover from, I am very grateful that I am able to do it; there are many that simply cannot!

There are some days I am too ill to even watch TV, listen to the radio, read a book or do some simple crocheting. It might be because I have done too much and pushed myself too hard, it might be because my body is using what little energy I have on fighting something as simple as a cold or there might be no rhyme or reason to it at all. ME/CFS is a fluctuating condition, so symptoms can change from month to month, week to week, even hour to hour. Those days are really tough and are spent mostly in bed. Often I’ll be too tired to do anything but lie in bed with my eyes closed, although I’m unable to sleep. It can be really hard to eat well and drink sufficient fluids on those days. Once I’ve used my energy to get up to go to the toilet I’ve often only got enough energy to fall back into bed again!

Thankfully over the years I have got better at pacing myself, so I don’t have as many of these days as I used to, but it’s not always in my control. I try to have meals made and in the freezer, so that when I have these really bad days a meal can simply be defrosted and reheated in the microwave.

It’s funny that the question people ask is “What do you do all day?” but never “Do you get lonely?” The hardest thing for me being home the majority of the time is the loneliness, the lack of human contact! But I shall save discussing that for another day, as I have waffled on for far too long already.

For those of you reading this who are in a similar situation to me, I would love to hear what things you have found to help occupy your time, keep your brain working when possible and keep insanity at bay! Please do leave a comment.

It Doesn’t All Have to be Done Today!

Five months ago I was broken, completely. I had reached the point where it felt like the only way out, the only way to stop the pain was to die.

I was having a hard time dealing will my illness, how much it limited my life and how much it had taken away from me, my landlady had written to tell me that she wanted to sell up, and without any warning, my partner left me!

Every single fibre of my body had reached its limit: physically, mentally, emotionally I could take no more. It was too much. It was too overwhelming. I was drowning and with my last breaths I was shouting and screaming for someone, anyone, to help me.

Five months on I have moved house, have yet to fully come to terms with the breakup of my relationship and I still have a long way to go in dealing with my ME/CFS and how it affects every single aspect of my life. But I am very much alive!

It has been a very hard journey to get to where I am today, there were so many things going on five months ago, so many decisions to be made, so many things to face up to and deal with, all at once. But that’s the thing, we humans can’t really deal with everything all at once, not effectively anyway. The trick is to deal with things one at a time and eventually it all (hopefully) falls into place. The day I broke I was completely overwhelmed with all that I had to deal with; I had no idea where to start or whether I was even capable of making simple decisions, let alone the massive ones. I just wanted someone to scoop me up, hold me tight, tell me everything was going to be ok and fix it all for me. But life doesn’t work like that, we are the masters of our own destiny, we are the only people that can fix our problems, our lives, and our hearts. With the love and support of a few very special people, I slowly started to pick through the pieces of my life, with the motto “It doesn’t all have to be done today”.

Today is ME Awareness Day…..

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….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.