What Is With This Bedroom Tax?!

I don’t get it. Who decided the rules for this bedroom tax business? I mean, I am all for saving money and should we have had a “spare” room, I would be more than happy to live somewhere else, or loose the money.

What I don’t think people realise is that its not just the people with extra or spare rooms that are being affected.

We live in a three bedroomed house. So that’s myself, Hubby, Pops and Beboo. The girls have a room each, one of which is a TINY almost pointless room and me and Hubby share obviously.

We are deemed to have a spare room, because we have two girls. They can share.

Now, maybe then can, but why should they?! At some point they will need their own space.

But that is not the only reason I am mad and perplexed, no. The main reason is because this house is adapted for me.  Before we moved in in-fact. So on my worst days I can still function safely in the house, throw in the fact that due to my extreme fatigue, sometimes Hubby sleeps downstairs as I need to rest, so he is not always in our bed.

Same goes for me, when I relapse, I will stay downstairs, near the toilet as to not risk falling on the stairs.

People and their situations are not always so cut and dry,whoever it was who decided what makes a room “spare” needs to wake up and start living in the real world.

A lovely lady on twitter has been affected as she and her daughter has a two bedroomed house. Meaning they can share?!

SINCE WHEN?!

Since when the hell was this seen as okay or normal?! 

This country is getting worse not better and so far, I have only seen the poor affected.

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Living Each Day, Because That Is All We Have

I have started to turn a corner, taking each day as it comes and dealing with it the best way I can, far from perfect and a little flaky, but what choice do we have?

I find that fact that I have this disease forever, a hard one to take. I cry and shout and yes, I have doubted myself and wondered if its worth being any more. Its not a nice feeling, or one I find easy to deal with especially as I have no choice in the whole thing.

I guess as humans we do what we can to survive, because really, we are programmed that way. So when life throws you a lump of steaming shit, you grab a cloth and start cleaning.

Just so happens with MS, the steaming shit throwing is constant and relentless. So we adapt, in a sense maybe we buy one of these fancy JML cloths. Go from there and keep trying. 

I tend to be the giving up type.

However with two little buggers monsters needing you every day, you really don’t have the giving up option.

I wish other people would see how life changing and debilitating this disease is. So many people know of it, however they simply know nothing about it.

I guess ignorance is bliss?

Or simply ignorant, I can’t decide?

 

Seeking Help And Helping Yourself

Having a disease like mine teaches you alot of things and also the people around you. You learn you have no choice but to ask for help and you learn how best to help yourself.

Let me explain…

With such a vile, debilitating condition, life constantly offers you the shitty hand, yeah its grim but its true. One day you wake up and you have to rely on others for help. I never thought at 23 I would need looking after, I am meant to be the one who does that. You go from living in your own little bubble to having to say “I need help” Or “I can’t”

Its hard.

I won’t lie, its damn soul destroying.

However you become accustomed to it and you learn to accept it and start trying to live again.

You learn how to put on a smile and act like everything is ‘normal’ You say “yes I am fine” when inside you feel like kicking them in the groin and asking them how they are now. You learn not to scowl when someone says you look ‘well’ You stop saying your tired when that’s all you want to say.

You find asking for help and giving in to your limitations gives you your own life back, albeit a different kind of life to before.

You also learn how to get the things you most need and want. Suddenly you tell the Doctor what you need, after all people who have MS know alot more about it than any GP. 

You stop taking no for an answer and realise you now have to spend what little energy you have fighting and proving yourself to people who have no idea what having this disease means.

A year ago this month I was diagnosed with multiple sclerosis at the age of 22, I was petrified and was right to feel that way. Like many other people who have this condition, I spend my days agreeing, telling and proving myself to others, all the time never really accepting what is going on inside. 

A year on I still have a million and one questions and tomorrow, I start my attempt at fighting back.

My Definition?

So recently I got my disabled parking badge, it means less money spent on hospital car parks, which we all know are very HIGHLY priced.

I am so glad I was able to get one, it really has made life so much easier. It begs the question what if the definition of ‘disabled’ I know its differently abled, but who is to decide this? To look at me some days you would not notice I was disabled. I can walk, albeit slowly and mostly with my stick, bot there is not much else to give it away.

Yesterday my and my sister went to have our hair cut, as usual we used our disabled badge, on returning to the car and loading up the children a man noticeably glanced at our dash to see if we, in-face had a badge. I have to say I was reasonably offended by this, who was he to judge? What made him think we WOULD’NT have a badge? Because I am not wheelchair bound? Yet.

I felt like walking over to him and asking him if he would like to walk a day in my shoes. To see what I see and how I see it. To feel the pain in my joints when I walk, I really cannot stress how much this man pissed me off. Can you tell?

It made me think about how I view the term ‘disabled’ and who decides what a ‘disability’ is.

I now for me it is mostly my sight. I have the paperwork and a ‘To my Wife’ anniversary card for my husband (yes I could not see the words, just made out the shape of the word anniversary, ha-ha) to prove it. Also its my bodies unwillingness to do as it is told, to give up and get tired so easily.

Would you judge me if you saw me in a disabled bay? Will you think twice next time you judge?