You didn’t just go there?

I often read blogs about ‘What not to say to the chronically ill.’ On the whole I do think these are helpful for people who want to remain a good friend to those of us who have been blighted with these kinds of issues. (Huge credit to you for trying!! We know we aren’t the easiest bunch to be around at times, or at least I know that.) However I do find these blogs to be a little blanketing. Not all of us are the same. For example, many advise not to tell your chronically ill friend they’re looking good, because it implies you think there’s nothing wrong with them that day etc. Well, sorry to break the mould here folks, but I couldn’t disagree more. You see, most of the time I look far, FAR from good. In fact I look positively haggard. So, if by some miracle I’m actually looking good (particularly if I’ve made a special effort to) it’s lovely if people notice! Funnily enough I don’t want to look as sick as I feel.

So, here’s my list of things guaranteed to get MY back up, and why. Feel free to add your own in the comments section.

But you’re used to it.

This is usually in reference to the pain I live in, or some other aspect of my ill health. People often say this when they are ill, because clearly having these symptoms temporarily makes them oh so much worse than living with them day in, day out, for years on end.

Can I just clarify something here. You NEVER get used to crippling illness. Resigned to it. Yes. But not used to it. Learning to live with something is very different than becoming used to it. For example, if it became law that all men were to be kicked in the balls on the hour every hour, would their lives remain the same? Would they be happy? Soon this would become the new norm. After initial fighting, and resistance, the men would be resigned to their fate. But, would that make it hurt any less? No. Would it make the daily torture ok? Hell no.

What are you using that for?!

Often accompanied by ‘It makes you look like an old lady.’ Or also ‘You didn’t need it yesterday.’ As you may have guessed, this is referring to one of my mobility aids. Whichever one I happen to be utilising at the time.

Just know that using any of my aids is a huge disappointment to me. I hate to do it. But I will. If it means I can get out on a day Id usually be stuck home, or go on a day trip with my family, I’ll use it. But I’ll also struggle as long as I can without it. There is nothing shameful about using mobility aids, but it’s a personal issue I have, one that I’m trying to get over. I don’t want to feel embarrassed to use something I need. Your ‘joking around’ doesn’t help. Please stop.

It must be nice getting to stay home all day.

I’ve even been called lucky. Lucky. (Just let that sink in.)

I did not choose this life. Staying home all day everyday is not my idea of fun. Being stuck in bed is not my idea of life. I went to university. I used to have a career. I was going to earn good money and have a nice house. I was going to travel the world. There is not a day goes by I do not wish I could be working and less of a burden on my family. Oh, and there’s the crippling pain, exhaustion and plethora of other symptoms. They’re not fun either.

I wish I could be a stay at home mum.

This fits in seamlessly with the above comment.

You know what? So do I! I wish I could be a stay at home mum. At least the mum I always wanted to be. But I’m not. I’m an ill person. I’m a woman who listens to my daughter play whilst I lay in bed. I’m a woman who lets her husband run the home, and needs him to look after her. I’m a woman who’s absolute best will never be anywhere near what she feels she should be doing. Please don’t think I’m getting to be a Betty Crocker mum. I’m not. But I am giving my kids the best of me I possibly can.

You want rubbing out and starting again!

Someone also once kindly told me I needed putting down.

I know these comments are meant in jest. But, when someone is feeling worthless, this type of thing doesn’t help. It’s just another stick for me to beat myself with.

I feel so sorry for you.

There’s many other ways of saying this. But they all boil down to the same thing. Pity.

I don’t want your pity. Sometimes I have my own little pity parties, but they have a guest list of one. My life is what I’ve been handed. I’ll live it as best I can. Knowing I have your pity is not going to help me enjoy it. I’d rather have your friendship. Thanks.

So, that’s a few of my pet peeves. I know there’s many many more. This is a post that may end up having several volumes to it!! But I’d like it to be about more than just me ranting. What is like is for people to read this and for it to make them think. Are you being insensitive without realising it? Could there be better ways of talking to your chronically ill friend? Or even to people around you in general. People all have battles, and past hurts, we aren’t aware of. If I could give one piece of advice, it’s this, if you’re not sure if you’ve caused hurt, just ask. Knowing someone cares always helps.

Let’s get a few things straight..

I’m getting really annoyed with how ‘PC’ the world is becoming, particularly in reference to disability. I am disabled, so I honestly think I’m entitled to a view here.

The way we speak of things these days has become so much about not causing offence, that terminology has just become ridiculous. For example, the other day I had to provide a ‘Fit Note’ to prove I am NOT well enough to work. Is it only me that sees how ridiculous calling it a FIT note is???

Firstly, I am far from fit. Secondly, fit note implies you are able and well enough to work. It seems that people no longer like the term ‘sick note’. Because sick is a dirty word. People shouldn’t be sick, especially not for long periods. If you are, hide it! This is where I think the problem lies. Saying you are sick, ill or disabled should not be a bad thing. It is a fact of many people’s lives. We need to use these words MORE. Not less. Rebrand them. Show that people can be sick, and worthwhile people. Accepting you’re sick and disabled isn’t accepting defeat. No, it’s accepting your life is going down a different path, and you’re ready to live if in a different way.

Here are a few other words that either make no sense, or are frowned upon for the wrong reasons.

Handycapable I cannot be the only person on the planet who thinks this just sounds ridiculous? My disabilities do not, in any way, make me more capable. Let’s call a spade a spade people. My disabilities are my handicaps. They make my life harder. Certain things I can no longer do. I am handicapped in areas of my life. Owning that does not make me weak. It means I’m a handicapped person who has enough fight and strength to rise above them. However, behaving as though my handicaps don’t exist just belittles how hard I work to live with them.

Cripple This seems to be another dirty word in today’s language. Unfortunately people have used it as a derogatory term. But it’s a fact of life. I myself am at times a cripple. I’m crippled by pain. I’m crippled by fatigue. I’m crippled by nausea. The list goes on. Luckily, I am not crippled all the time. But some people are. Let’s not sugar coat their struggle in life by being afraid of strong words. (If I catch sby of my readers using this one in a derogatory way, I will personally come call you on it.)

Finally, but possibly most importantly there is the word that everyone seems to be afraid of…

Disabled It took me a very long time to accept this label for myself. Some felt I was giving up on life when I started referring to myself as disabled. There is a lot of stigma attached to this word. Stigma which is not helped by ‘Benefits Britain’ type programmes that portray all disabled people as work shy dole bludgers. If you see a person in a wheelchair you’re probably comfortable accepting they’re disabled. But a young woman who looks fit and healthy on the outside? Surely not! Surely she must be faking! This way of thinking is so ingrained that we, as the ‘unseen disabled’ often find ourselves thinking this of our own bodies. This is one of the main reasons I struggled with the label. But, being disabled is not tantamount to failing at life. It was only once I admitted I was disabled I found I could stop fighting my body and start working with it. For me, accepting my limitations has allowed me to finally work with my body and live better.

So you see, these words are not bad unless you choose to make them that way. Actually, they can be pretty empowering.

I hate Asda.

I think my email to them illustrates why…

Hello.

I’m contacting you in regards to the very poor service I have received from Asda Direct.

I ordered a food processor on January 7th. It was to be delivered on the 28th, a disappointing 2 weeks later. I waited in all day and was called at 17:20 to say the item was no longer in stock and I would be refunded for the item. It’s unclear if I’ve received the item plus postage or just the item as I’m disabled and unable to check.

As soon as I was able I contacted your customer service team, as documented below. I was advised the item was not in stock. I should perhaps purchase a cheaper, less versatile food processor (that does not fit the needs of my family) and forwarded a voucher.

However, the item is in stock. You have just returned it to your original price.

On pointing this out I was basically told tough luck. Plus it seems the voucher is for George. So cannot even be used on electrical items.

Having consulted several large groups on Facebook, many people share my outrage. To the point that someone kindly scoured the Internet and provided me with this email, some telephone numbers, and great advice as to how to spread the word to the masses on what’s happened.

It seems very much like Asda had a quota for how many sale items to sell, when that was hit the unlucky customers, such as myself, were let down.

Let me ask you this. Why was my item not reserved as soon as I purchased? In this day of technology that’s not difficult. Amazon does this and also lets you know within 48 hours if items aren’t available. Which brings me on to my next question. Why was I not informed sooner? Thus giving me the opportunity to purchase elsewhere. Why was I told it was still out of stock when it was clearly on sale? Why was I given a (useless) voucher for George when my purchase was clearly electrical? Would I have been lucky enough to receive my item had I shelled out for express delivery? I believe I would.

I asked on the phone, originally, not to be refunded and to wait and get the item when it came back into stock. I was told this wouldn’t be happening within the foreseeable future. I had no choice. The refund had been put through.

As a company you have failed at every turn. You have broken our contract of sale and left me in a position I now cannot afford an item of the same calibre as the sales are over. I also cannot cook for my family, something I was greatly looking forward to.

I was incredibly excited to receive my purchase. As a disabled person, it is not just another gadget to me. It was my opportunity to regain some use within the home and give myself some self respect. I only purchased from yourselves, and shelled out the ridiculous postage, because I felt I could trust you more than other companies. Apparently not.

So, I am asking you. Do you think this treatment of a long valued customer is ok? Are you proud of your company? Is causing your customers disappointment and upset ‘all part of the service’?

I asked if Asda would honour the price I first purchased at, seeing as I didn’t choose to cancel the transaction, it was thrust upon me. I was told no. Not a chance. So much for ‘Asda price’.

So what am I to do? Other than spread the word on this debacle and advise everyone I possibly can how well you value your customers. (Yes, that was sarcastic).

Yours, with a complete lack of faith in you,

My name.

*The moral of the story? Small things are a big deal when your life revolves around hospitals, pain relief and bed!!

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Dark shadows.

So, I’m going through a bit of a rough patch. A culmination of events has left me drained both mentally and physically. I feel as though all of the energy has leeched out of me, leaving just an empty shell. A shadow of my former self.

Shadows seem to be a theme in my life at the moment. Maybe because I seem to have a huge one hanging over me? I’m desperate to get out of it. To take a step forward into the sunlight. But I can’t, I’m shackled here in the grim darkness.

This post is not the one I’ve been wanting to write. I have had many ideas of things I want to cover. Fun ideas. Upbeat ideas. I want to show that life with chronic illness isn’t all doom and gloom. Because it isn’t. I love my life. I love my family. I’m happy.

The problem is, at the moment I’m a happy person stuck in the darkness. A shadow has been cast over my life and my smile. I know why. I know it will pass. But for the moment it’s here and I have to live within it. Groping around in the darkness until the sun bathes my aching body again.

It’s winter here. The weather is cold. Even in bed, hiding under the duvet, I feel it nipping at my skin. Cold is pain for me. It’s a lead weight in my hands and feet and nails being driven through my joints. Cold is exhaustion. It’s every movement taking so much more effort. Cold is my body seizing up and me fighting to make it move again. In the winter I am the tin man without oil, I’m a grizzly bear who’s been forced to stay awake. The shadow cast over me is matched only by the shadows under my eyes.

I’m tired. I’m so tired that I feel like I could sleep forever and still not be rested enough. I’m so tired I’m on the verge of tears and I don’t know why. Speaking is too much effort. I trip over my words and stumble and slur. I make silly mistakes and beat myself up for them. The shadow stops me seeing and thinking clearly, so my life is just a series of consecutive actions. None of which are thought out. Many of which are clumsy or foolish.

So, life at the moment is hard. It’s hard to see how I’m going to feel better soon. It’s hard to have the energy and impetus to do anything (blog writing included). It’s hard to just make it out of bed on a morning, physically hard. But it’s ok. Because my life is hard. It’s harder than I ever dreamed it would be. And, though I push them away when I’m struggling, I have a family that loves and supports me. I have amazing children who’s laughter and imagination cannot fail to bring a smile to my face.

So yes. I’m in the shadows right now. But I’m ok. It’s ok if you too are in them. There’s nothing shameful in that. I’m in the shadows, but I’m not despairing, because I know that in order to have shadows the sun is shining somewhere. Soon enough the winter will be over, I’ll be more recovered from recent health battles, and it will be my time in the sun again. Yours too.