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.

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.

My condition is only going to get worse. I’m not being weak willed. I don’t bite. I’m human and I’m still 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

WE ARE PEOPLE WITH A LOBATOMY.

There’s nothing we can do about it. This I hope, explains why we loose skills we once had, such as walking, writing and, in my case, touch and audio typing. So when it comes to housing costs, that’s why we do need certain items, such as new wheels for our wheelchairs, Zimmer-frames and scooters. This also includes certain flooring. I assure you, there’s no fun in kissing the floor because we’ve fallen over, especially when there’s an object like a desk or chair in front of you. This usually happens because of foot dragging, which we cannot stop. To give you more detail, Multiple Sclerosis means that I’ve got holes in my brain, which is why I compare what is happenoing to me, to being lobatmised. It’s why I also cannot write or work anymore. I also buy books aimed at children who need help with speaking, as there’s only a certain number of classes I’ll get, regarding speech therapy. I appreciate that adults are concerned when they see me in the children’s section of a library, but I assure you, it’s because I want to look at the books that help with speech. It also hurts that I’ve lost my savings but I have to get things immediately to live with my condition, which is why, along with loosing other enjoyments I used to do, such as going to the theatre or opera, I have no choice but to claim Universal Credit (UC). So please don’t be rude to us, or use the disabled toilets, as we have no choice but do this. I have to wear adult nappies, when I’m outside my dwelling. To get the nice ones that look like everyday underwear, I have and do, pay privately for them, from my benefits. So please cut us some slack, life for us isn’t black and white but shades of grey, without the excitement of the 50 shades novel. Light and Peace Andria.

Do not let, what you cannot do, interfere with what you CAN do.

I’ve been reminded this, when I went to open the front door, of where I reside.

 

I had a hard time getting to the door but I made it. It was embarrassing for me, as I was in nighttime clothing, in the afternoon.

 

But now I’m glad to say, I did it. Okay I don’t look good but with fatigue being a major factor of MS for me, I’m glad I was able to do this.

 

So to all people with MS, please take pride of what we CAN do!

 

Light and Peace

 

Andria.

WE NEED COUNSELLING!

That's what I've realised over the years, in helping us to come to terms, with having Multiple Sclerosis - MS.

I never thought the day would come, where I’d lose my abilities to touch type, earn a living or walk properly but such is the case, now I have MS.

So please, don’t look on us as a bunch of scroungers but see us as we really are, as people who are dealing with the cards that life has sent us, regardless of our sex, size, race or age.

As I’ve said before, life isn’t black or white for us but shades of grey.

My positive words for today, as I do want to say something nice: forgive yourself for not knowing then, what you realise  now

Light and Peace,

Andria.

It’s time for a change.

That means that it’s time for everyone to realise that long-term disabled people, whether it’s physical or mental disabled, aren’t people who are claiming because we are pulling a fast move, we are claiming because we have no choice.

I liked having various skills, which meant I could get various jobs and I did like having challenging jobs, which was reflected in my pay.

Now I have no choice but to get other people to cook, clean and collect my mail, as I cannot do this.

The skills I once had, are long gone. My speech therapy classes are over, so I visit various sites on social media, buy certain books and practice speaking wherever I can.

This is what comes with having Multiple Sclerosis, a disability that destroys the nerve cells in the brain and the rest of the body, which is why we end up in a wheelchair.

As have been shown on certain shows, too many of us are seen as easy targets and will end up victims of theft, even in our own homes.

I assure everyone, I’m not shopping in exclusive shops or living the high-life anymore. I accept this is the way it is for me.

So please, realise these issues, explain why we make our claims to the state.

 

Light and Peace

 

Andria.