It’s World MS Day!

But for the nearly 3 million people living with it, it’s every day.

MS has also shown me how truly strong I am.

I’ve learned that I am adaptable and resilient.

It has given me a voice to advocate for myself and others living with this terrible disease.

I’ve learned to navigate life with a severe and ever

progressing disability.

I am happy and have a life worth celebrating, but it is also very difficult, and sometimes I break down.

I long to do the things I could before MS, like driving or going

for a walk.

If, like me, you liked work, along with the focus, drive and determination to get things done, along with getting paid a good salary that reflected this, you’ll learn to take the cold reality of knowing you’re not wanted in this world anymore.

Maybe with time and a little luck, they will find a cure.

Do remember this: you - who has MS – are here because you have every right to be here.

Light and Peace

Andria

x.

THIS IS DRAMATIC!

How is it, that some people can really put you down, and make you feel like total rubbish, in just a couple of words? People with multiple sclerosis, MS, unfortunately know about this.

There's something around disability going on here, that I can't even talk about, but it IS about that and writing us off as useless, or looking at our disability and seeing us as being a bunch of moaners and parasites, instead of realising, like anyone else, we have needs that must be addressed.

I know finding somewhere to live, in the UK isn’t easy, so when we do find a dwelling that will accept us - people with a long-term health issue that’s only going to get worse - we are very grateful but please realise adjustments need to be made, regarding our disability, to make that accommodation safe for us to live in.

I can use some weights machines and do a front-crawl swim but there are days, weeks or even months when I can’t due to my fatigue and lack of ability to fight-off infections. It’s made worse by the MS, which also interferes with balance and co-ordination

People can look at me, and assume that I am just exaggerating and making it up, but I’m not.  There are other people who also have MS or other long-term health issues affecting the body/mind and know, to make an important life-style decision between heating and eating. I choose heat, as cold weather makes my body condition worse.

I don't need people putting me down and devaluing my worth but some people do. That’s why, when another person tries to be friendly, many of us get ratty, because when someone, innocently tries to be nice, we wrongly say to ourselves, ‘what are they up to?’

I am not making excuses for us, as I accept, we must realise not all people are bad. As with life, we need to realise, there are good people too.

One of the hardest lessons I’ve learnt in life is to accept I meant nothing to people who meant the world to me. But this is the case for all of us, whether you’re disabled or not.

I still say, to one and all, regardless of your health, ENJOY LIFE, IN THE HERE AND NOW!

DON'T FORGET TO  HAVE A GREAT DAY!

 

Light and Peace

 

Andria

We all have a past.

No-one is perfect and that includes people who are disabled.

Some of us are very angry that we’ve got this illness of Multiple Sclerosis (MS), even if we aren’t in a wheelchair.

I admit, if I had a choice, I wouldn’t have MS. But I’ve grown to accept my condition.

We’ve all made choices that maybe weren’t the best. I was happy to put behind me, my days of being a career woman, to doing weekend work or be a stay-at-home wife and mum.

I liked having an administrative, nine-to-five office job, so when I got this illness, it changed the direction of my life, which, at first, I found hard to accept.

None of us are completely innocent, as it’s still not known why a person gets MS. We will always have to live with physical and emotional pain that comes with this, which includes asking ourselves, "why me?".

Believe me, I’ve looked, hoping that I would find a cure. I’ve accepted I won’t find one. I still have days when I’m frustrated that I can’t get up and go for walk.

However, every day gives us a fresh chance to be a better person than yesterday.

So please get washed, change clothing, get a manicure and Carpe that Diem, regardless of the nay-sayers who’ll do what they can to steal our joy from us!

Light and Peace

Andria.

I WANT TO ENJOY LIFE!

 

I’m aware that people who read this, tend to think my life is about doom and gloom.

Please realise it’s also about enjoying life to the best too.

That’s why we need the money we get. We do need help in the form of other people washing ourselves.

Even if we don’t need that kind of help, when, like me, you’re at stage two of MS, you do still need help, regarding flooring, toilet and bathroom aids.

This ranges from getting internal and external mats, railings, special underwear (okay, adult nappy's) and special products to clean 9 intimate areas of the human body.

All of which, are pricey and have to be replaced, along with getting other medical products for internal use, I assure you, despite having to deal with these issues every day, I do still decide that I still want to enjoy life, so I’m going to say this:

I WISH ALL OF YOU MOMENMTS OF PEACE AND HAPPINESS IN YOUR DAY. YOU DESERVE WONDERFUL THINGS.

 

Light and Peace

 

Andria.

Why people with long-term health issues do need a Care Plan.

It’s easy to think that sticking us in a building is okay and that’s all we need.

Well unfortunately, fatigue, lack of balance and co-ordination, which gets worse for me during the day and our bodies turning hot for no reason, which means I’m sweating in my clothing, then go cold for no reason, says something else.

This is the case in cleaning anything, from washing a plate, to cleaning my room and the rest of my dwellings.

I pay for a housekeeper, which isn’t cheap but she is someone I can trust and does a wonderful job.

I don’t insist that she wears a housekeeping outfit. I’m just very grateful that she makes my place well-loved, cared for and hospitable.

This includes tidying up my bedroom and changing bed sheets. I’m grateful for this. Before my housekeeper, I would look at my dwelling and cried. Not just because of the mess but because of the frustration of not being able to do it myself, as I did before having Multiple Sclerosis (MS).

There’s no point in moaning to myself, ‘why is this so hard for me?’ as I’ve accepted that my cry will only be answered by getting a housekeeper that I know who’ll not steal from me.

We don’t like asking, as I, like many who have a long-term health condition, affecting the central nervous system, want to se seen as strong, independent and capable.

But our health says to us, NO, IT’S NOT GOING TO HAPPEN AND I WON’T LET YOU DO THIS!

We smile and remember to be friendly, even when we know that those same people that we are being nice to, are talking about us, in a nasty way, behind our backs or have an ulterior motive, when asking us questions in a friendly way and manner.

My condition is only going to get worse. I’m not being weak-willed. I don’t bite. I’m human and I’m stll capable of turning up for meetings. That’s got to count for something!

Light and Peace

Andria.

I LIKED WORK.

When I was told by my doctor that I have to be signed-off from work, due to me having Multiple Sclerosis (MS) it really hurt me, emotionally and psychotically.

You see, what I missed about work is creating a staggery, plans and getting the right people to do the work and delivering the right results to and for the correct people.

That also meant walking 20 minutes to the underground or overground station, the day before work, which was part of my routine. I liked getting up, washed, dressed and travelling to work.

 But now, I can’t write. I’ve learnt how to speak again, thanks to speech therapy but I do still get brain-fog and bladder issues.

When the only work I could get was voluntarily, as a receptionist at the now defunct Brent Association of Disabled People, I took it, gratefully.

I liked reading through documents to get things done. Now, even when reading for pleasure – at the moment,

I‘m reading You With The Sad Eyes, by fellow MS sufferer Christina Applegate, I do so with a magnifying glass.

I liked having the focus and drive to get things done, as well as remaining pleasant to colleagues, as I was also respectful of their needs and space.

I admit, I liked getting things done. When I was given the diagnosis of MS, I knew that my world had collapsed and for many years, I was determined to find out why I had been diagnosed with MS and find a cure.

I’ve since accepted there’s no cure and my need to be in a wheelchair. So please, be kind and nice, to people like me, as they too, had plans, hopes and dreams before getting the same diagnosis as me.

Many of us, at first, do get annoyed because we do through a phrase of saying, to ourselves and others, why me? Accepting this co9ndition isn’t easy.

We also become easy targets of people pretending to be nice but see us as easy targets to rip-off - that’s why many of us get angry.

Unfortunately for many of us, we realise this behaviour from others, is now a part of life, for us. Light and Peace Andria

I fell over – again!

This is so embarrassing and hurtful.

Embarrassing, as it reminds me that my balance and co-ordination skills have gone, which is why I avoid bending for items that have fallen out of my hands.

I also have to accept that my feet drag – my left one is the worst – MS has slowed me down, but it doesn’t have me, which is why I have paid for adjustments to be made at my dwelling.

Not all faculties we need are paid for by the local council.

Hurtful, as I now have a bump on my head, that’s painful, so now I’m having problems with my vision and I’m using an ice cube to get the swelling down.

 Along with fatigue, which is a constant condition, that’s why this entry is short – I have to concentrate on my head!

Light and Peace Andria