Sunday, December 22, 2013

Hmmmm empathy v's sympathy. Having been in receipt of sympathy, I can safely say it generally makes me feel worse. For example, I have been on the receiving end of these comments, and several more that fall somewhere in-between.....

'Ohh you have MS? That's awful' .....sympathetic head tilt....'I know someone who had that. They died.' 

'I know someone who had MS. They were fine. Not like you. It must be hard.'

Aaaarrrrggghhhh! Everybody dies! There's not necessarily a direct correlation between death and MS. You may have a slightly shortened life span, but as you don't know when your expiry date is anyway, there's no point stressing about that!

With over 50 symptoms of varying severity, it stands to reason that no two people with MS are the same. Hence why it has been coined the 'snowflake' disease. Each and every one of us are different.

For clarity I include dictionary definitions;

Empathy: the ability to share someone else's feelings or experiences by imagining what it would be like to be in their situation.

Sympathy: ( an expression of ) understanding and care for someone else's suffering.


Now, to me, sympathy sounds one step removed, and not truly felt, or meant. Meer lip service. And I get that in spades. Trouble is though, with sympathy, there is nothing to back it up. No action. The purpose of the sympathy seems to be that it makes the one offering it feel better. 

Empathy goes that one step further, and if you happen to be on the receiving end, you no longer feel so alone. And as such you feel you matter. And this makes your load lighter.

Let us not forget that MS cannot be fixed. And a million other situations cannot be fixed either. But they can be made more bearable, if a connection is made. It's not about fixing the unfixable, it's about connecting, and being sincerely and genuinely present. 

Can you be that person? Make the connection. Take the time. REALLY be there for someone.
Watch this. It clearly defines the difference between empathy and sympathy with humour....


For mobile viewers, click HERE

Friday, December 13, 2013

Today I saw a video that I want to share with you all because it resonates with me so very much. A different illness, but the lost feeling of being carefree is so very similar. To lose being carefree really takes it's toll. It is a feeling I have lost. I had not been able to vocalise the feeling, or give it gravitas.

I felt I had lost or misplaced a part of me, but I wasn't sure what it was. At least I now know what it is that I am missing. Or rather what it is that I'm carrying. In a sack. Like a dead weight that I have to carry everywhere. That I can never put down or forget. And sometimes, it prevents me from moving, breathing or feeling. Numb. It takes my breath away, and leaves me saddened.

This morning, I woke early. And as I lie there in the quiet, I felt good. I had not moved, so I could forget, albeit briefly, that my physical self was so very restricted. So whilst the house slowly began to stir, I allowed myself to dream about what I'd do if I was not restricted....

Well, the little man and I get dressed up against the cold, and we go to the park. We walk down to the horses at the end of the park and exchange a hello. We leave with hands smelling of horses, and with the feeling of them on our palms and fingers. A smell I love. A smell of my youthful, carefree days.

Back home, and I carry the little man up the stairs to bed for his morning nap. I gather the gifts that are piled in our bedroom, and carry them downstairs to begin a wrapping marathon. Writing tags, cutting paper and sellotape, the pile slowly shrinks. And I slowly begin to feel I'm winning.

The little man wakes, and I strap him in to the car, and go to a pub to meet friends for lunch.


...And that is how I spend my dreamtime...

I know how to dream don't I? The every day, normal things. They are sorely missed from my days. Absent. And the hole they have left, and the sack I carry is weighted with their loss. And to replace the loss of the normal, is a heavyhearted anxiousness. I want so much to put the sack down.


Be carefree. Not careless. But carefree.

For mobile viewers click HERE.

Saturday, December 7, 2013

Since my last post, I've been thinking about the facts and statistics regarding disabled people here in the UK. Here are some of my findings.....

* There are 9.4 million disabled people in England, which equates to 18% of our population.

* 45% are males. 55% are female.

census 2011

* The prevalence of disability rises with age - 1 in 20 children are disabled, compared with 1 in 5 of working age adults, and almost 1 in 2 over state pension age.

Office for Disability Issues updated Department of Work and Pensions Estimates based on Family Resources survey 2009/2010

* Only 17% of disabled people were born with disabilities. The majority acquire their disability during their working lives.

*Less than 8% of disabled people use wheelchairs. The majority of impairments are not visible.

* People are more likely to become disabled if they have a low income, are out of work or have a low educational qualification.

Papworth Trust disability facts and figures 2010.

MMMMmmmm and not for the not so factual bits.... these bits are just shyte...

* 38% of people believe disabled people are a burden on society.

* 28%of people believe there is ill feeling around the perceived extra support given to disabled people.

I would guess that the same 28% read The Daily Mail.....

For mobile/tablet readers, click HERE.



* 27% of people think disabled people are treated differently because there is a lack of knowledge around disability.

* 65% of people have admitted they avoid disabled people because they don't know how to act around them.

BT - Ready, Willing and Disabled Event 2011

* 180 disability hate crimes are committed every day in this country. EVERY DAY!!!

And that is just a taster of the facts. You can check it out in it's entirety for yourself at :

                               www.efds.co.uk/resources/facts_and_statistics

I've ran out of things to say. Kind of leaves me a bit speechless.

Friday, December 6, 2013

Because Who Is Perfect Anyway?

December 3rd is International Day of Persons with Disabilities. Did you know that? I didn't. I'd never heard of it, and that in itself was interesting. Anyhoo, investigating it, I learned a couple of facts....but before I did, I had to look through google and in doing so, I discovered other irrelevant 'facts'. It was on the first page, but 6th in line behind celebrities birthdays (Amanda Seyfried turned 28). The placing of this day, December 3rd, on google, shows me just how important it is.

*15% of the world's population live with some form of disability. This equates to one billion people. Makes you think, hey?

*Physical, social, economic and attitudinal barriers prevent disabled people participating fully, effectively and equally as members of society.

So, those barriers are preventing 15% of the population from contributing, taking part, and spending. And that makes no sense. Not for the individuals, not for the people and not for the businesses. Let alone the Countries and the World. And that makes no sense.

And what led me to this was my daughter discovering this video.....I want to live in Zurich.

For mobile/tablet viewers, click HERE to view the video.


Because who is perfect anyway?





Thursday, November 28, 2013

It has been bought to my attention (by which I mean bullishly stated/SHOUTED) that a couple of people out of the thousands of you, are not happy with me using any words derived from the word spastic. I am only ever referring to myself, and I am aware it can be used as an insult. I am not seeking to insult myself, or anyone, rather I am seeking to claim that word back, and diminish it.

So, to discuss the provenance of the word. It is a medical term, used to describe muscular weakness and spasms. Consultants have used it when describing what Multiple Sclerosis has done to me. In particular to my legs. It's VERY upsetting to hear that word used to medically describe yourself. One things for sure, I don't start SHOUTING at the doctor for being DISGUSTING for using that term to describe what's happening to me, and why. It's VERY upsetting to live with it. So I use it to refer to myself, in a bid to reduce the horror. I know it may sound clunky, rude and uncomfortable to other people. Living with it is definitely clunky and uncomfortable. And it has certainly rudely interrupted my life. If you don't like it, don't read my blog.

I will not be censored/controlled/bullied publicly, by someone who could choose to contact me privately to discuss her concerns and opinions. But no, she, for whatever reason, prefers to publicly SHOUT at me and talk AT me. Never once a discussion.  I know that the blog is global, and that I'm inviting responses just by putting my thoughts and words out there.

But not from this person, and not in this way.

This person writes about the fantasy of rape and necrophilia. When she invited me to read her blog, I chose not to, and privately told her of my decision. I would not tell her, or anyone, what to write, or what not to write, and would appreciate the same in return. If you don't like my writing, or what I write about, don't read it.


For mobile viewers click HERE. I love Adam Hills, so I recommend you watch it all, but if you can't, whizz forward to 10.50.

I am not on the outside, looking in and poking fun at something I have no experience of. I am on the inside, living and experiencing this every minute, of every day. I wish I wasn't. But I am. So if I say spaztastic, and if that makes me laugh at myself and the situation I find myself in, and what I have to deal with, so be it. 

Monday, November 25, 2013

AAaaaarrrrggghhhhhh!!! But...I smell something brewing....

This weekend was interesting. Friday night saw me at a friends having dinner and conversation. The dinner, the conversation and the company left me feeling full and satisfied. A good night.

On Sunday there was a family meet up, to celebrate a birthday. Several attempts had been made to find somewhere with suitable wheelchair access and a disabled toilet. The two prerequisites to allow me to join in and have a stress free easy time. The place that was finally settled on declared themselves accessible and with a disabled loo. Bingo! Or so I thought.......

On arrival, and whilst still in the car park, my only thought was, 'Oh fuck.'

The disabled parking spaces were at the furthest end of the car park from the 'disabled access' and the pathway was blocked by those huge industrial skip type bins. So we had to park near to the 'disabled access' in a normal space which does not allow enough space for you to open your door wide, another 'need.'

So then to the top of the slope......the so-called disabled access. I felt like an olympic ski jumper, staring down a run so steep. If you weren't disabled at the top, chances are, you would be by the time you reached the bottom, in a scabby broken heap. Feeling invincible, and with my mind screaming that I needed to talk to the manager or manageress about their access, I thought 'Fuck it.' And let go of my wheels. I know I've never moved so fast, which is not so great when your hands are your breaks. As I neared the entrance, I was greeted by another bloody obstacle.

The door.

It was big, and looked heavy, and was found to be heavy, with a handle up high, it opened outwards, so towards you, not easy when I can't just step backwards, and I had to negotiate all this on an upwards slope with a bloody door mat on. Driven by 'gggggrrrrrr' alone, I got in, and was greeted by a sales assistant asking if I was ok. 'Errrr no. Can I see the person in charge please?'

The person I saw was helpful, and was grateful for my feedback, got those massive bins moved, and offered me a wine. Sounds good, but then......

My mum had booked a table in the bar. Our table had been moved into the restaurant. Down two steps. To compensate for this, a ramp had been placed over the steps. Small compensation though, as it was another steep slope with a lip at the top and the bottom, which I couldn't negotiate independently. Being in a wheelchair is bad enough, let alone when you can't do it independently. It really ups the spaztastic feeling.

Aah but what of the disabled toilet? The toilet was fine, but getting to it was not. Up that bloody ramp, which I had to ask for help with, through the bar, negotiating tables and people, through another doorway, that took my knuckles off, with another heavy door that I needed help with. To strip it down to it's basics, I had to ask for help to go to the loo. Like a child. And incurring injuries on the way. Brilliant.

To get to the car I had to go down a different, gentler slope. But oh, it had a kerb at the end. I know I can get down a kerb, but not everyone can. And why the fuck would you design it like that anyway? And me negotiating the kerb gave rise to worried looks on the faces of the onlookers, which was kind of priceless.

So this got me thinking on the journey home. People are not aware, not truly aware if they have had no experience of disability. And I mean first hand experience. This is what is needed. In schools. In workplaces. Restaurants. Shopping centres. Everywhere that able bodied people go.

Until able bodied people experience disability for themselves, it's all supposition about what is truly needed. Until the world is equal and inclusive, there stands to be winners and losers, the included and the excluded.


I do not want to live in that world. It's no good for anyone.

Going out is a bit like this.....but without the awesome skills.



For mobile/tablet readers click HERE for the link.

Saturday, November 16, 2013

Sometimes there is a lull in my posts. Sometimes this is because I'm busy. Sometimes this is because I'm finding it difficult to hit on a topic. Sometimes it's because I feel rough. Sometimes, like now, it's because of all three.

This time, whilst feeling rough, I spent my time with my new and oh-so-beautiful acquisition, a book called Letters of Note. A truly beautiful compilation of letters that will give rise to every emotion known. I am not ashamed to admit that one letter, 'Our Frank' had me weeping. I remember Frank. And I remember the horror of the Lockerbie bombing that alerted me to his presence.

The letter describing a mastectomy performed without anaesthetic.....can you imagine? Letters of all kinds furtively reside within the hard covers, waiting to be read, waiting to be imagined, waiting to be felt.

This week was a week that introduced me to reads that made me feel, really feel. One such read was in  The New Yorker, and was a piece by Ariel Levy called Thanksgiving In Mongolia. I've put a link so you can read it for yourself.

http://www.newyorker.com/reporting/2013/11/18/131118fa_fact_levy

As long as I'm feeling empathy, and keep searching to share the experiences of others, I know I'm still alive. And for that I'm grateful.

Friday, November 1, 2013

I should be so lucky...

Last night I went to the supermarket with the good man to do the week's shopping. I usually do the shopping online, but I'd left it, and the cupboards were bare. So, to the shop we went. And all went well.....until a lady approached and told me how lucky I was. I'm in a wheelchair, do you call that lucky? Turned out she was referring to the fact that I had a husband and that he was doing the shopping, with me, a poor disabled. Inside my head I was screaming. She told me how lucky I was to have a good husband. I told her he was lucky to have me. To be honest, we were both a bit taken aback by her. Y'know, the kind of taken aback where you form the words after the event.

This incident raised several questions.....

1, Why did she approach offering opinion? For all she knew, I was in the wheelchair because my husband had caused me to be there, accidentally or violently.

2, Why did she single out my husband as good? Because he was shopping? For food that he was going to eat? For being with me even though I was in a wheelchair?

3, Why did she single me out as lucky?

4, Would she have approached us individually?

5, She approached us, so she must have felt it was ok to do so. And she must have also felt it was ok to offer her opinions, whilst not knowing anything about us, or our situation.

On reflection, this has made me laugh, but it has also made me angry. I may be wrong here, but it did feel as though she was saying that I was lucky to be with someone, despite my disability, and that my husband was good for being with me, despite my disability. 

And just like she should not offer opinion to two people she doesn't know, I cannot offer opinion on the reasons behind her behaviour or actions. But I can say how it made me feel. Quite frankly, it was her shit, and she can keep it.


Thursday, October 24, 2013

Yesterday was interesting. First of all I got to pick up my new wheelchair and it's a thing of beauty. Turns on nothing and really lightweight too......the colour is not what I expected but, hey, it matches my boots, and that I can live with.

The good man can pick it up one handed, before he wrestles it into the boot. AND importantly, it has very short handles, so people are deterred from just pushing you, where they think you want to go. It's comfy, has a holder for my crutches, and damn if it isn't just SOOOO EASY! 

Secondly, I saw Jeremy Paxman interview Russell Brand. I NEED Brand in my team, on my side, waving my banner or just twatting unhelpful, unkind people with a placard. People like him will always divide opinion....make up your own mind....you can watch it here....

For mobile readers click HERE.




Sadly I am now firmly in the underclass group he speaks of. And that I can live with. What I can't live with is being treated and seen as less, just because, through no fault of my own, I have this shitty disease. A disease that tries it's very best to strip you of independence, identity, value, and well, just you. 

Well, back off MS, you've had enough. Enough of me. Independence, identity and value is to keep, mine to keep, not yours.


Monday, October 14, 2013

Those of you that have read my blog for some time will no doubt have noticed that I swing back and forth like a pendulum, between people that amaze me, either with their kindness and generosity, or with their sheer foulness and meanness.

We|l, check this....

A couple of days ago, a friend of mine was on the bus, and the bus stopped to let two more passengers on. Fairly standard behaviour so far.......One of the passengers that the driver had stopped for was in a wheelchair. The driver allowed the walking person on, and then shut the doors, and when my friend challenged this, the driver said that the woman in the wheelchair can wait. Presumably for the next bus. In an hour. And presumably because the driver is a dick*.

The pendulum swings one way......

Then swings the other way......

A couple of days ago, my daughter was on the bus. Another person in a wheelchair was waiting at a stop. The driver got out and helped this person onto the bus. Helpful. Thoughtful.


These are the kind of behaviours you may experience when in a wheelchair, and you may encounter people, doctors, shop assistants that don't talk to you, and instead talk to who you're with. About you. About your wishes. Or you may find people carry on as normal. Treat you as normal. Perfect.

Sadly, not everyone is helpful, and not everywhere is welcoming. This has led to visiting the same few, very few places over and over, and these become my rat runs. Rat runs.....because I do feel as welcome as vermin. Generally, no one is busting a gut to make the world an inclusive one.

There are few places that are truly wheelchair friendly. I need wheelchair access and a disabled toilet. Not much to ask for is it? Well, yes it is, apparently. Those two things on my wish list knock out a lot of places. Oh and I need it to be accessible from a disabled parking space.

If, on a good day, I choose to go out with the good man for a coke, I have the choice of three pubs in a ten mile radius. These three pubs will become one, due to accessibility, and as I become more and more dependent on my wheelchair. I am like a Dalek from Dr Who, getting foiled by fucking steps.

The world has got small enough as it is, due to multiple sclerosis playing havoc with me, so when the world itself is unwelcoming, it's enough to make you scream. The world is designed to suit the majority, which at first glance seems reasonable enough. However, if the world was designed to suit the minority, the majority would not be ostracised.

For example, I am wanting to have a spa day with a friend. On phoning round the spas of the county, yes, the COUNTY, I quickly realised that my wish list.....y'know, disabled loo and accessible.....well, I can whistle. I did eventually find one place, in another county, and it can accommodate me no problem, and the staff were excellent, focussing on what I can do, rather that what I can't. I'll be visiting next year, and just to have the knowledge of that impending visit feels good.

I am looking forward to developing that rat run.

*Standard issue statement re The Last Leg channel 4.

Monday, October 7, 2013

When the ones I love are struggling, seeking to reassure and calm them, I'm likely to say, 'This won't last. This is just a moment. It will pass.'

Time and time again this advice has proved invaluable, to many people in many different situations. But I struggle to find something of equal worth to suit me, and what I'm facing.

'This won't last. This is just a moment. It will pass.'

The same can't be said of my situation because this will last. And it will get worse. And this is the knowledge that I carry around with me, like a heavy malignant shadow. Always there. On my heels. Never resting. From when I wake, until I sleep, and in my dreamtime....

Dreamtime. I dream that I can still walk. Walk whilst carrying my boy. Walk whilst holding the good man's hand. I dream I can still run.

The shadow is always there. A constant presence. Cold comfort.

It makes me cry. It makes me scream. It makes me hurt. It makes me not want another breath.

It makes me feel helpless.

What to do?

What to do? Keep on keeping on....it's the ONLY thing I can do. My only option.

Monday, September 30, 2013

Goodness me, I feel caught between two worlds, and it's making my head spin. So, first up, I had written about the charity football match, that was taking place on my behalf on Sunday. It was a beautiful sunny day and everyone attending seemed to have a good time. Perfect. I chose (actually...I was told who and why, because I'm clueless about football) and presented a trophy to man of the match. And as I was in front of all these people, I couldn't help feeling blessed. They had all given up their time and hard earned money to be there. Helping/playing/attending/paying just because they can and want to.

The celebrities playing presented me with a signed t shirt, in a hot and airless testosterone filled changing room, and as I went to bed in it that night, I couldn't help but feel a bit blessed.

This is in stark contrast to the opposing world.

Before, I had believed that if something horrific, especially if it was through no fault of your own, befell you, help would be there. Wrong. We, as a family, and me as an individual are struggling to get what we need. And I am talking about basic, human and real needs. Somewhere to sleep, and somewhere to shower. And I am actually being denied these needs. As if my days aren't hard enough.

So, in camp one, we have kindness, generosity, and happy people and the end result is me feeling this in spades. Helping, because they can. And it feels good.

In camp two, we have unkindness, meanness, and people that are just horrid. And the end result feels so bad. Too bad for words. And it makes me feel totally without worth. And as if, stupidly, it's my fault. Something I've done wrong, and this is what I deserve.


So, through a circumstance of nature's cruel creation, I am between two camps, and I know which camp I prefer and naturally gravitate towards. I get a sweet taster of what it has to offer, as I get to view it from time to time, as I feel it's warm glow like sunshine on my face. But I get to view it from behind a chain link fence, next to a sewage pipe spilling it's guts.

For the people of my hometown...THANK YOU.

For mobile users, click HERE!

Wednesday, September 25, 2013

Today was my last day of IV steroids. This was in response to the fact that I am still relapsing, and I hope beyond hope that the steroids give MS a real good hard kick in the pants.

I need my wits about me for the charity football match this Sunday, and frankly I need all the help I can get....me + football = no clue. So the plan is, be there. Stay awake. And hope not to be glowing like a beacon. Because at present, my face is rosy. And that's being polite.

So my radio interview has been aired, and so far the feedback is good. And it was ok actually. Previously I would have declined the offer to go on the radio.....too scary! But since MS has entered my life.....well, THAT'S scary and unpredictable......everything else......not so much.

AND I'm putting in the order for my wheelchair! How exciting! FREEDOM! They are a fantastic and helpful group of people.....Bromakin at Loughborough in Leicestershire...if you find yourself in need.

And I'm also looking at starting a support group for local MSer's. Because at the moment there is NOTHING!

Last Christmas I was given two tickets to go and see a comedian at The Stables in Milton Keynes this Monday. It was a fantastic venue for wheelchair users, and I can't thank them enough. Helpful, thoughtful and treated me like a 'normal' that just happened to be in a wheelchair. And a damn good laugh was just what the good man and I needed. Cos living with this shit is hard, and we need a break sometimes. Because it is my everyday, I don't get a break, the good man can and does get a break, but he always worries, so just to forget a while is just incredible. A real tonic.

No doubt my next blog will be about the football match, so until then, be well.

This one's for you Kat. Sometimes life chucks us a curve ball, and despite the people and support we may have around us, we are the ones that wake up with the crap, and go to sleep with it too. And it can make the most loved person feel alone. Know you are not alone.

Friday, September 20, 2013

Well, that was interesting. I've just been on the radio to help promote the football match that's raising money for me, to help get the adaptions I do not want, but so badly need. I tried really hard not to swear about what MS has done to me and my life, and I'm happy to report, I was successful. I shall reward myself later, probably with a hot chocolate.

Here's how you can find out more about the match.....www.footballforcharity.com

You can listen again to the radio....http://www.bbc.co.uk/radionorthampton/on-air

Just in case I've done that wrong, it's the John Griff show, from today, 20th September 2013.

I don't know what else to say really, just that I'm so happy that when people that can help, do. Because, to be honest, I could really do with a leg up here. I've been dealt a shitty hand, and I am doing everything I can. It's just so much better when you have people to keep you company and cheer you on, as you battle away.

It's never good to be solitary in your battles, or in your triumphs. The card I have been dealt is without question, shit. What makes the unbearable, bearable, are the people, and the lengths they will go to, to give you that leg up.

So, be that person. There will be people in your life that could do with a helping hand, and you will feel good if you extend a hand, or offer a leg up. 

Everyone's a winner. 


Thursday, September 19, 2013

I have been deliberating about sharing this with you all, and I have spent 24 hours considering it, and I have come to the conclusion that I have nothing to gain by not sharing, and actually, as I type, it's becoming less of a deal. It's just what is.....

Yesterday morning I had an appointment with a neurologist and he, after a lengthy and thorough examination, and history taking, diagnosed me as having secondary progressive ms. Shit. I had thought this, but still, hearing it out loud from a neurologist.......

Hhhmmmm, ok, what now? As I'm still relapsing within secondary progressive I can stay on my current medication, an infusion called tysabri. This is most definitely a win some/lose some situation. For the first time ever, I thank the fairy of spack attacks because without those relapses, I'd be left high and dry, as there are currently NO medications to alter or slow down the effects of secondary progressive ms. Like I said...shit.

However, there is a tiny pinprick of light at the end of the tunnel I find myself in. There is a trial of 3 drugs about to take place. These drugs are already in use for other conditions, so are already known to be safe, and the 3 drugs are being trialled at once, so this is time effective. And time is important here. The longer things take, the more damage is done. The quicker drugs become available, the better.


On the plus side, things are coming together with regards to the football match that's taking place on my behalf. The crappiest photo of me ever was in the local paper to promote the game, and I'm on the radio on friday morning too.

So, what can be done, is being done, and you can't ask for more than that can you?

Still feels shit though.


Monday, September 16, 2013

Today my husband had the afternoon off. I love these times, but what do you think we did? We were checking out wheelchairs. As wheelchair shops aren't on every high street, we had to travel for an hour. When we got to our destination, I was welcomed by a slight incline, and then an automatic door. Good start! Beyond the door, lay wheelchairs galore....including ones for kids, and sport wheelchairs. Have you seen wheelchair basketball? Incredible, and a bit scary.....

Anyway, I told the man what I was wanting from my chair....lightweight, folding as small as possible, but beyond that I had no clue. He produced three for me to try, and Christ on a bike! Talk about lightweight! And they turned so easily! I never would have pictured myself smiling and laughing in a wheelchair, but I can honestly say it was a joy! I finally managed to whittle it down to which one I wanted to go for, (with some considerable help and reassurance) and then I got to choose the colour. Choose the colour? I have a choice? OMFG! This was definitely an easier task, and pretty enjoyable too.

The man that helped me out was also a wheel chair user, and incredibly helpful, and told me what to consider as my needs change. All of the staff, wheelchair users or not, were friendly and helpful, but most importantly treated me like a 'normal.' We had a bit of a joke around, and conversations where we discussed the typical and usual things of life.

I hope to goodness that the wheelchair voucher that I've applied for comes through, and goes some considerable way towards it, because these chairs are not cheap. But they are worth every penny. If you are a walking person, imagine for a moment that you cannot walk, and then you find something that makes your days easier. If you are a wheelchair user, you'll know what I mean.

I have a wheelchair, but it's old, clunky and so heavy. And is limited in what it enables me to do. It has a breakdown if you whisper 'slight lip' or 'uneven path ahead' to it. You know when you're a kid, and you have stabilisers on your bike? If you hit a dodgy bit of road or path, you can be peddling like crazy, putting all the effort in, and going nowhere. That's my wheelchair. I am not looking forward to getting back in it, especially after the ones I've tried out today.

So I'm crossing my fingers, and sending up a prayer and kiss to the goddess of free movement. And a nudge towards Rio, and the Paralympic wheelchair rugby team....

Well, a girl can dream......


 If this video doesn't show up, click HERE to view it on YouTube.



Tuesday, September 10, 2013

Today's been a good day. It started with a donation from a person I don't really know. But they know of me, and my need to have my house adapted. I didn't know what to say, and it's not often I'm speechless.

The person that's organising the charity football match for me, also organised promotion through the local paper. So, joy of joys...my photo is going to be in the local paper. Not my idea of heaven, but a well promoted game with a good turnout, is. And I never thought I'd be saying this about football, but I am actually looking forward to the game.

A friend also popped round today, for a cuppa and a catch up. Tomorrow, another friend that loves cooking is coming over, and bringing lunch. And then another friend is calling in on Thursday. As I spend an awful lot of time on my own, and I'm unable to go out on my own, or even with ease with others, having people round is an absolute pleasure. And it keeps me in touch with the realities of the outside world.

Sometimes, I am happy hide away, who wants to be seen at their worst? Sadly though, I need help. And to get that help, I have to make myself visible. And so my wish for invisibility is something that I can forget. I have to display the weakest and worst parts of me. The parts I would much prefer to be hidden.

This is in stark contrast to my life 'before.' Before, I would just get on and do my thing, whatever that may be, and without thought of my visibility. Before I was the girl from the village, the girl that worked at the school, the girl from art school, the girl from the gym, or the mum of all those girls, or the girl training to be a midwife.

I am still that girl, but what people see now is very different. And all that I was, has been smothered, forgotten about, and replaced with crutches, a wheelchair, and a need for adaptions.

I will always be what I was. And that's something that cannot be eroded. Even as I feel myself becoming less.

Forget that actually. I have my voice. And I have my fight.

No one and nothing should ever make you feel less. Worth less. You are what you are. That's all that you can be. So you better make it count. And I won't count for anything if I hide.








Sunday, September 1, 2013

I am trying not to panic. But I am failing miserably. The reality of my situation is scary. And I really don't know what to do.

If I look back 5 years, I get to my diagnosis. Those 5 years have delighted me with a rapid descent. So looking forward 5 years is scary. How will I be? Already, I'm not walking independently. Or working. Or driving. Imagine the impact that has on my everyday/life/independence/choices/future.

"Deal with what is, not what ifs." This was the advice I gave to other people who were tying themselves up in knots. So reminding myself of this, I catalogue some of the what is......

1, Greatly reduced income.
2, Greatly reduced choices.....rock or hard place anyone?
3, Reduced friendships.
4, Pretty much a reduced level of independence....whoo hoo..look who got showered all by herself! Moi! This makes me so happy/sad all at the same time.

These are just some of my everyday realities.

Reading this, some of you no doubt will be thinking, 'But they help you, don't they?' Errrr, who is this mythical 'they'? Well, 'they' are hiding with all this 'help.'

Or some of you may be thinking, 'Why don't you just move?' Well, to move, I have to get a mortgage. To get a mortgage, I have to have a job. The good man has a job, but can only work part time, because of me, and the support I need.




I live in a house of steps, and that makes me recoil whenever I have to go out/come back. Like most people, I have to go upstairs to the loo, or to bed. This makes me shrink in on myself as I'm faced with the stairs. The stairs. My enemy. My workout, as pulling my inflexible corpse, heavenwards, makes my heart pulse as I tackle this obstacle.

Right now, despite the good, all the very good, I hate my life. Specifically, I hate being like this.

I hate being less.



Friday, August 30, 2013

This week has been interesting. Personally, historically, globally and nationally.

First off, personally, my boy turned 1, and this led me to indulge in some personal reflection.

Historically, it was also the 50 year anniversary of Martin Luther King's "I have a dream" speech. Reflection here was also integral to the speech. What is the point of reflection if it's not to better your understanding? What's the point if you don't act on those lessons learnt? Dr King had clear vision of where he could see us going, and it was to the benefit of a nation, and not individuals within that nation. He had a point, he made it well, and sadly, for the most part, we missed that point. And this missing the point, has impacted globally. It's simple......treat others as you expect to be treated yourself.

And nationally, there was the incident where special needs kids on a trip with a performing arts school, were forced to sit on the floor of a train by the toilets, to 'spare' the other passengers from 'seeing the likes of them.' Just writing that makes me take a deep breath. And it makes me wonder, 'Just how far have we come from that speech of '63?' I know that speech was talking of the hope, and need, for racial equality. To me it transfers to ALL equality. It really is to everyone's benefit if we live with equality.

As it stands, at the moment, a person's race, a person's financial status, a person's physical ability or disability, even looks, seems to be a notable point worth mentioning. All men are created equal, after all. Are they really? Errr, no. Initially, yes, until the point of birth. And then humans create and maintain a divide, sectioning people, and putting them in boxes.

The only thing we really need to be concerned with is our level of kindness, honesty and fairness.

Having MS, I can honestly say that fairness and kindness is missing from the disabled box I find myself shoved into. I did not willing get in that box, but I am willingly getting out. I too have a dream, and it is that all of us act with kindness, fairness and honesty. And to treat others as we wish to be treated ourselves. To be any other way is to shit on your own doorstep, and that's just stupid.


Tuesday, August 27, 2013

My beautiful boy turns 1 this week, and this in turn has caused me to look back over the past year. It's been a mixed year of extreme opposites. On the one hand I have a boy that is always happy and smiling, and this reassures me, that despite my limited capabilities, I am doing something right. My girls have developed into people that are capable of making their own decisions, as they forge their way in the world. I have met some incredible people due to having MS. Like right now, my husband is out at football practice with twenty-one other volunteers , training for the celebrity game to raise money towards the downstairs bedroom and bathroom that I need. They are giving up their time and raising money for me........THANK YOU!

On the other hand, since early pregnancy, I have gone downhill physically and I have lost so much independence it's unreal, and this impacts upon my ability to be me. The real me. The busy, gyming, swimming, working, socialising, driving, walking, me. The me that I am now is still me, but I am a shadow of who I was. 

So anyway, to celebrate the day our boy began to make his three day exit, the good man planned a picnic, and so off we went..... 



This view is my doorstep. And it makes you feel good just sitting there, enjoying the view with the ones you love, having a picnic, and feeling the sun on your face. Sitting on a blanket in the great outdoors, I felt less of a spaz, and that's always a good and welcomed feeling. Especially as I'd just got over optic neuritis. This is an inflammation of the optic nerve, and it disturbs your vision, and made me feel sick with the pain and made me want stab myself in the eye with a screwdriver. 

So it was a fantastic thing to just sit and actually see that view.

You win some, you lose some, but me, my picnic blanket, the good man, our boy, the girls and their strides towards adulthood, and my eyesight are definitely winning.



Wednesday, August 14, 2013

Check me out with my new accessory....disgusting, isn't it? Why oh why the bright red strap? Why oh why is the piece of hard plastic up the back of my calf the colour of the nearly dead.....a sort of beige grey insipid blurgh. But it makes we walk a little better. It's another you win some, you lose some situation. At the moment the weather is quite nice. The weather that calls for cut offs, dresses and skirts. This ankle orthosis calls for trousers. And rather ridiculously its called a Dynamic Ankle Orthosis. I feel anything but dynamic with it on. I feel like a proper spaz. Especially when I team it with the crutches or wheelchair.

Don't get me wrong.... despite my dislike for the Dynamic Ankle Orthosis, it's fantastic when people that can help, do. And do it whilst treating you like a real person. It does aid my walking, and for this I am grateful. My dislike is purely and wholeheartedly because I need this at all. And because it's not plain black all over.




Thursday, August 8, 2013

Yesterday was a good day, and what made it a good day were the people that filled it. It was a day of appointments and they were all with people that are helpful, that look for the possibilities rather than the problems, and they make those possibilities happen. But the gold star goes to the local fund raiser who came to see me to discuss him putting on a charity football match with TOWIE people to help raise funds for the adaptions I need. He has done this several times before for those in need of support. He was calmly discussing what we needed to do.....and meanwhile inside my head, it was going a bit crazy.....'Really? You'd really do that for me? Eeeeeeeeeeeeee!'

There was one fly in the ointment of yesterday though. My cd player died. Today I have realised in old lady stylee that this is ok, as all my music is on my laptop and phone, but yesterday it was the end of the WORLD!  Which is a bit of a daft reaction from me....I was, without doubt, the worst member on the music pub quiz team. So it's fair to say I don't live and breathe music, however, I would not want to live in a world without it. Sometimes a song really resonates and hits home, or reminds you of a time or person, or sometimes it just makes you smile LOADS and puts a little bounce in your day. Or makes you say 'Ugh....what IS this?' (Remember...I do live with teenagers....)

So I thought, from time to time, my blog would be accompanied by music....and here is my first choice......

                                

Sunday, August 4, 2013

The internet is a marvellous thing isn't? To think I can sit here and share my words and ideas internationally is just awesome. Unfortunately though, this is abused by some, that are doing the same as me. Just writing, from the safety of home, but targeting, and abusive. And cowardly.

I am openly sharing, in a bid to improve understanding. These people are anything but open, preferring to hide, believing that they are afforded some anonymity which allows them to behave in a way that they believe reaps no repercussions. Well, the masses have spoken out loud at their disgust, and changes will happen as a result.

Which is why I, and many others boycotted twitter on Sunday 4th August, in response to the abuse targeted at Mary Beard, Grace Dent, Catherine Meyer, Stella Creasy and Caroline Critado Perez. The abuse came in the form of bomb threats, murder and rape. These women were also told to develop a thicker skin when they complained. Really?

I think the people issuing these threats should be taught a thing or too about general good manners, for starters. And they could really benefit from having someone point out, that should the opportunity present itself, and you were to find yourself face to face with these women, would you really be so bold as to issue these threats? Or carry them out? Probably not.

And this is the thing with the internet. It allows you to find anything out, share your thoughts, and keep in contact. It also allows nastiness to spread, and for those spreading that nastiness to hide.

Incidentally, August 4th is Friendship Day.

My nan always said, if you haven't got anything nice to say, don't say anything. She was a smart little Welsh lady, and she would have taught these disgusting people a thing or two about manners. Hopefully they'll be caught, sentenced and the people of prison will teach them a thing or too. Be careful what you wish for, because it might just come back and bite you on the arse.

Friday, August 2, 2013

It's cooler! This brings me untold joy as ms does not like heat! Sun, yes, heat, no. A marriage made in hell. This is due to Uhthoff's syndrome, where a raise of 1/4 degree in core body temperature sees an exacerbation of your symptoms. And results in me being a limp mess. Like all my bones have dissolved. Beautiful. And I was panicking slightly that the IV steroids from last week hadn't done the job.

It wasn't always this way. Back in the day I would have been enjoying the sun, like most people do, with the odd 'oooohh it's hot init?' Icecreams, cool drinks and paddling pools, and every single towel you own in the garden, left there, grass stained and muddied, by yours and neighbouring children. Everything looks better in the sun. Even a big pile of dirty towels.

So as heat is no good for ms, is cold weather better? Errr, no. I find I have increased spasticity which sees me moving around like a peg doll. And pain steps up a gear too. Again, beautiful.

So these days where it's still sunny, but not too hot, and with a breeze that's fresh are my ideal. And so I plan to make hay while the sun tones it down a bit. I'm going out with wristband girl to get some birthday presents, whilst she gets in some driving practice. We may even take in a pub.....pop and crisps....WILD!

Which beats feeling like MS has made a goldilocks out of me...not too hot....not too cold. So I'm going to make the most of it, while it's just right.

Monday, July 29, 2013

I finished my IV steroids on Friday and I'm happy to report improvements have been noted. Today, for the first time in 11 months, I gave my boy a bath. Normally, this has fallen to the good man to do, whilst I just watch. The perennial bystander of my own life. We both got a bit soaked, which made it all the more perfect.

On Saturday I went to a shop and enjoyed getting my boy some tee shirts. This was a new experience for me, and, it's fair to say, I loved it. I was on my crutches but it was all a bit easier, and I really enjoyed looking around, and choosing. It didn't break the bank.....£11 I think, but it was actually priceless.

When I got home, the family en masse did a little weeding. I had been finding it impossible to get in to the garden, so to get out, and weed, and enjoy the sun, and the garden was fantastic. And even better, it was shared by teenage girls, small people, the dog, and the good man. We are all still basking in the glory of a good job well done, as we peep out to enjoy our work.

On Sunday, the good man, the little man and I went out for a coke. Such a normal everyday event, that most people can do without even thinking. Well, believe me, I swear my smile made a 'kerching' sound.


I still get completely battered and knocked about by MS, but I'm bouncing back quicker. I don't worry so much about going out and about. So much so, I'm out with friends tomorrow. Another coke, and a catch up.

And life, as a result, has bit more ease and joy in it.


Friday, July 26, 2013

Today was my third day and last day of having IV steroids. They are amazing! It's the little things that count.....and these little things that I have noticed changes in, are little......but to me they mean so very much....

1, I had a shower today, without assistance, and without the board that goes across the bath to sit on....that's right people! I had a shower, all by my bad self, and standing up! I cannot remember the last time I did that, and it felt so good.

2, I was sat on the bed and I lent over and plugged my hair dryer in. No biggie you say? Normally, I struggle to even do this small task.

3, Whilst standing up, I feel more solid on my feet. I am still using the lush crutches or the wheelchair for distance, but it all just feels a tad easier,  y'know?

4, For the first time ever, I picked my speedy crawling boy up from the floor, and there are NO WORDS to describe how very good that felt. It's enough to say my eyes feel a little leaky writing about that triumph!

5, My friend took me yesterday, and so to repay her, I took her for lunch. And I did it without worrying about the access, or where the bloody loos were, and we just sat, chatted and enjoyed.

6, I had more friends call round last night.

7, All of these things add up to me feeling like a real person, and that is priceless.

Some of the not so good things.....

Horrible taste in my mouth, but hey, mints to hand and I can live with it.

Track marks up arm. Oh so very attractive, but I can style it out.

Being sent home with the most annoying accessory du jour.....

 wrapped up...
 unwrapped...

You win some you lose some, and on balance, I think I'm winning.

We are also winning on the sale of the wristbands. I am so proud that my girl had the idea....and they are beautiful. They are travelling well, on my behalf, getting to places and beaches that I am not, but I feel like a bit of me is there.

Friday, July 19, 2013

I've been writing 'Balancing on the edge' for three and a half months now, and as I hit nearly 6,000 page views, I thought I should take a moment to say hello, and thank you to all you readers. Blogger logs the country of origin for the page views, and you lot span the globe. Which I find amazing!

I started this blog as a way to air my frustrations at the way disabled people are treated. And as I've spent most of my life able bodied, I feel I can, sadly, draw the comparisons. And I have to say, on balance, being a spaz is beyond shyte. So, to be clear, I feel I could live with the monster that is Multiple Sclerosis, but what I find hard to live with, are the restrictions imposed upon you by an unthinking world, that makes you fight so hard for those things you don't want but NEED. It really flicks my switch.

So, back to giving thanks.......one of my girls came up with the idea of charity wristbands, to help with fundraising towards the disabled adaptions I need.

We worked together on them and she knew what she wanted them to say.....

'The good you do today......is the good that shall return.'

I added a bird at the end of the text, and chose turquoise as the colour. We settled on the thinner width, and put our order in. When they arrived I was beyond happy! They look great, and as there is a reason behind each element we chose, they are personal too.  Can you imagine if I see someone I don't know wearing one? I think I'd be beyond happy!

So anyway, I digress....I'd like to say thank you again, to all of you who have read. Please feel free to share my words
.


Wednesday, July 17, 2013

Goodness me, this MS shizzle is really kicking my arse, and I was starting to feel like I must be making it up. 1 or 2 posts ago I wrote about the MRI I had, and I've just had the results back, and YEP...I'm relapsing. See? I told you I felt shyte! So, confirmation I'm not making it up v's Oh this is a bit scary.....it's not really supposed to happen on my drug of choice.

My old hospital kept telling me..."You're ok." I didn't believe it and I certainly didn't feel it. Hard to when you're in a wheelchair or on crutches, and you don't trust everything is being done.....  Feeling there must be more, this was one of the reasons why I changed hospitals, and that's where I had the last MRI done. The results = THEM calling ME to get me in for IV steroids. This is not a dream scenario, however, it is a dream to have actions taken on your behalf, and to believe those actions are in your best interest.

I've only had the foul tasting steroid tablets before. ( I was actually sick on top of the table......that's how lush THEY are.....BEAUTIFUL!) But this time I'm having them intravenously. So I asked my MS buddies for comparison feedback.....and the IV rates quite high!

I might be unsleeping, hyperactive, hungry, and quite chatty.....but I also may feel so much better. But hey....I'll risk it for a biscuit....probably a whole packet actually.

Saturday, July 6, 2013

Ups and downs.

A few posts ago, I wrote of the parcel I received in the post from a friend. Well, this friend has only bloody well gone and written, and published a book! Impressive! I love her muchly!

http://www.amazon.co.uk/The-Chameleon-ebook/dp/B00DBEGCWC/ref=sr_1_1?ie=UTF8&qid=1373109615&sr=8-1&keywords=the+chameleon

I don't know what is going on in the world...it all feels a bit unbalanced. On one hand, I have these stars satelliting my sofa based moon ;) as they do incredible things.....the book writing friend, the friend who's just landed a coverted job in Switzerland, the friends that are planning their world wide trip, the friend that just rode his bike for just over 100 miles, a push bike, not a motorbike!.......and do you know what? They are all lush people. Radiators.

On the other hand.....I watched a BBC programme the other day. The programme was 'Imagine' on the war photographer and photojournalist Don McCullin. He had travelled the world photographing horrific images again and again, and they displayed us at our very worst. Every day the news reports deaths and horrors. They may or may not be happening in our country, or our town, or our street, BUT they are happening in our WORLD. And it makes me very uneasy. We need to learn from lessons past, and not keep repeating these actions, that cost lives, in the hope of a different end. The world and the people in it, will get drained.

Are you a drain? Or a radiator?

I feel very vulnerable. I would be first up for the gas chamber/bullet in my disabled state. So what of the people in a similar situation as me in these places? I dread to think. You think I exaggerate? 'Imagine' revealed blind children, of various ages that had been locked in a room together. They were left in their own filth and with no comfort. The heat was overwhelming, but the warmth of kindness was sadly missing.

There is talk of consequences in this film. And that is exactly it. Think of the consequences of your actions. Not just to yourself, but to others too. Be brave, not passive.


“It's the action, not the fruit of the action, that's important. You have to do the right thing. It may not be in your power, may not be in your time, that there'll be any fruit. But that doesn't mean you stop doing the right thing. You may never know what results come from your action. But if you do nothing, there will be no result.” Mahatma Gandhi. Good bloke.



Tuesday, June 25, 2013

I started my day yesterday with an hour long MRI. I have decided there are better ways to kick off the week. I don't mind them, but plenty of other people don't like them at all. And I can see why. MRI's are a cold, noisy tiny tunnel. The noise is best explained as machine gun fire, with the occasional seize fire for daleks to have a chat and a game of the 80's electronic toy, Simple Simon. All this whilst someone pops open a jar of coffee by repeatedly bursting the paper seal with their finger.

It's not very often that I have a whole hour to myself of uninterrupted(ish) thoughts, and I couldn't help but think about the images the radiologist would be seeing. Me, in slices. The whole of my spinal column and brain, separated into sections, as they search for scarring and inflammation. These should correlate with, and answer why I have the symptoms I do. Clever init?

And a far cry from the diagnostic techniques from yesteryear. A way of diagnosing MS was to put people in a hot bath and watch as they wilt. This is due to Uhthoff's syndrome, where the slightest raise in the core body temperate can result in the temporary exacerbation of symptoms.

It's amazing how so much has developed in understanding this disease, and the development of the drugs, and the MRI, but there is still a long way to go. In the 70's it was thought there would be a cure within 10 years. 40 odd years later, and we're still waiting. Will it be in my lifetime? I don't know.......there's still a long way to go. But I'm not going anywhere. So I'll be just here, impatiently waiting.

Thursday, June 20, 2013

Time to make a change.

So then, we have all been privy to the news surrounding Nigella Lawson. Saatchi, to make his point clear, grabbed her throat. I feel this topic is too big for me to do it justice, so I'll just state some facts from women's aid and the BBC....

1, 1 in 4 women will be the victim of domestic abuse in their lifetime.

2, 1 incidence of domestic violence is reported to the police every minute.

3, On average, 2 women a week are killed by their former or current male partner.

Recently, 2 miles away from where I live, a woman was stabbed to death by her husband. She escaped out of the kitchen window, and banged on a neighbours door for help. She died from her wounds, and left 2 children of that marriage. That neighbour is a school friend of my daughter. The blood on his path and police tape remained for some time. The memory of that horror will last forever. And the children are starting a new life in a new country without either parent. Heartbreaking.

You are more likely to suffer domestic abuse if,

1, You are separated couple,

2, You are unemployed,

3, The lower your income, the higher your risk,

4, Those with a long standing illness or disability are also at greater risk.

I would recommend a book called, 'Living with the Dominator,' to all to gain an understanding of this complex, heartbreaking and poorly understood and rarely discussed 'situation'. The responsibility for making a change, lies with all of us. Starting with how we raise our children, what we expose them to, what we teach them is, and isn't acceptable, and how they treat others and how they can expect to be treated in return.

This affects us all.


Monday, June 10, 2013

I really thought I'd make my mark on the world. Not in a grand way. Just in a way that says, 'hello....I'm here.' By doing my job well, by being a good friend, by being a good mother, by being present and interested.

Unfortunately, the only mark I'm making is with my arse on the sofa.

And it really makes me feel left behind. The world really can get on just fine without me. Can you believe it? I can't.

I see other people getting on, going to work or the shops, going on holiday, going on picnics with their kids, y'know, just living, and I don't feel like I am living. I feel like I'm waiting. What for? Fuck knows. But there must be SOMETHING?

So feeling a bit grrrrr, I booked a tramper and had a ride around the countryside, in the best company, and it was lush. And I booked the good man to take me and the little man swimming....also lush. Wet poolside + crutches = interesting. And I'm due to start sailing soon. MMMmmmm kagool....not so lush. So I can get on and do, but I ALWAYS need other people. And that's restricting because other people have lives and jobs and aren't on hand 24/7, at your disposal, whim or fancy.

I miss my job SOOO badly. I miss my friends, and being a friend. I miss being the mother that isn't restricted physically. I miss independence and just being able to do things on my own.

It's hard to feel present when you feel absent. And it's hard to feel interested when you feel so far removed from interesting.

I really just don't know what to do, or how to be with this. How can I learn to be ok with being less?

Tuesday, June 4, 2013

MY CRUTCHES HAVE ARRIVED!!

And goodness me if they aren't sleek, comfortable to hold, and comfortable to walk with! And.....

PLAIN BLACK!! with a sheen! Needless to say.....I'm chuffed to bits. And I know they'll be great when I'm out and about and, importantly, they'll go with whatever I'm wearing. Clashing? Not anymore, thanks! They are the perfect spacka accessory.

Accessories when you are disabled are generally ugly. It's as though all the design effort is used up and there are only the dog ends left by the time it gets to us. And, I have been told, by a 'caring' professional 'it's not about what you want, it's about what you need.' Are they mutually exclusive when you're disabled? And I do know I NEED adaptions, but can't I have a choice and a say in what they are? Able bodied people do. Seriously, would you let anyone in to paint without even choosing the colour?

I DID NOT have a say in getting multiple sclerosis, and this makes me even more determined to have a say about what I need. I am best placed to know that need. And this takes me back to the crutches. They're crutches, and there's no changing that, but it was possible to change the design to a way that suited your personal taste. Colour or pattern - you could choose ANYTHING! Because at the end of the day, we are all individuals. And this should be welcomed, catered for and celebrated, whether you're able bodied, or less abled.

And so my crutches mean I can walk, and keep me steady, but they are also remind me that I do have a say and they remind me that I am an individual. Plain black would not be everybody's choice, but it is MY choice. And I am happy with that.


Friday, May 31, 2013

choices choices.

I remember, back in the day, agonising over the choices faced when shopping. Shoes, jeans, tops, bags. I was restricted, like most of us are, by price.

But now I find myself trawling the internet for the perfect crutches. They are elusive. Or so I thought, when I was faced with an incredible array of colours, sparkles and bloody butterflies. I mean there's no disguising them, they are never going to fade into the background, but I do not wish for mine to scream out loud either. Some people want theirs to be pretty, and there's plenty of choice out there, if this is your ideal. If, however, you want yours plain, you may run into problems. The vast array was making my eyes bleed.

There's so much to consider. Soft grip handles? Adjustable? Open cuff or closed? Diamante trim ( I'm not kidding.)

I JUST WANT BLACK! PLAIN BLACK!

After much searching......Taa Daa! I found a pair! Black! ADJUSTABLE CUFFS!......They can be closed OR open! Soft grip handles that are REMOVEABLE and WASHABLE! The height is adjustable, as is the distant between the hand and the elbow. I feel like I've died and gone to spacka heaven. They aren't cheap sadly, it's costly to be disabled, but they will make my everyday a little bit easier. No more blisters, callouses, backache, or  crutches falling to the floor.

And they match my leather jacket and satchel. Happy ish days are here again.

Monday, May 20, 2013

Yesterday I was watching the RHS Chelsea Flower Show. It's always impressive to see the passion, commitment and patience of the gardeners competing, and to see what they produce, and the thinking behind their designs.

But it was the interview with gardener Chris Beardshaw that knocked me sideways. He had been diagnosed with Arthritis as a teenager. He had designed a garden to reflect the several aspects of going through diagnosis, and how it impacts upon your life, and life choices, and I drew parallels with him as he talked.

The first garden was the Veiled Garden. And he talks of the boundaries he faced, and optimism disappearing and not being able to fully engage.

The next garden was the Lucid Garden. This was about realising you are not alone. There's light, consistency and the veil and fog lifting, and new optimism.

The last garden, The Radiant Garden is about bringing joy and a new, positive new lease of life back into the everyday.

He has gone through all those gardens on his journey with Arthritis. And there are similarities for anyone with any long term, debilitating illness to be drawn from listening to him speak. I flick back and forth between the Veiled and Lucid Gardens. But now, I have hope, that one day I may find myself in the Radiant Garden. Until then, I plan to get outside and weed and grow and enjoy. And I hope that this gets reflected in my days. I've already cleared the weeds from my life......good start! And now to nurture and enjoy, with optimism.

There's no time like the present, so I best get cracking.


Friday, May 17, 2013

False economies.

False economies. I kid you not, they aren't worth it. Bin bags, loo roll, cling film. And the list goes on. I had a hospital appointment today and got home to an overflowing bin. I go to change it, and my fingers end up in the rubbish as the bag split it's skin, unable to cope with the pressure from the unwanted, damp, greasy remains.

Cheap loo rolls......you really don't want your finger to burst through that!

Anyway back to the beginning.....

I've just changed hospital for all things MS. The last consultant I saw at my old hospital, talked to my husband, and not me, despite the fact that I was there. Right there. 'I'm your patient! You should be asking me your questions! I can answer them!' So that was what I was thinking. I was also thinking 'cheers bud, you've just made up my mind that I must move hospitals.'
My first idea to do this came as another consultant asked another patient loudly, in a room full of other patients, 'How is your urinary incontinence?' Christ on a bike mate......did you miss the common sense and sensitivity module? I could happily get paid a lot of money to be an insensitive twat.

So the new hospital....is light and bright, as were all the people I saw. Straight forward common sense in shed loads too. They could see I needed help, and they offered it. Explanations and decisions were plentiful. And they were made quickly too. And this resulted in me feeling like I was in partnership. And WE were going to do the best we can.

It's a false economy to spend your time on people who are not going to help you be the best you can be. Doctors, partners, friends, and we are full circle back to the drains or radiators again.

I'm back with the radiators, and I can't tell you how good that feels.

Thursday, May 9, 2013

Yesterday I was in a bit of a fix. I was getting wound up at the way things are, and the way I'm doing what I can, and how it seems to no avail. I'm not getting anywhere. Helpless? Absolutely. We all know I have ms, and this brings it's own problems. And it is more than crap. What is really crap though, is that some of the problems I have, have been magnified by other people behaving so badly, and it's beyond comprehension.  However, what I must not do is get stressed about it all. MS and stress are not happy bedfellows, so it's best to keep them separated.

So realising I was a bit knarked to say the least, I rang a friend. Lucky lady. This friend tells you how it is. And packs a punch with the softest delivery. The most effective way to serve up the truth. Acknowledging that these things are unforgivable and tough to live with is enough. And move on. And that is what I'm trying to do. Big shits cast a long shadow. But you can't get shadows without the sun. And thankfully, I have that in spades too.

I plan to use those spades to shovel the shit away.

Friday, May 3, 2013

Birds.

Right, so confession time, just in case you missed the painfully obvious. I'm up and down. I'm angry at the loss that this monster has caused. I am grateful for the gifts
it has given me. I hate what it has done to me, but I love the lessons that I have learned. Crazy roller coaster and I want to get off. NO! WAIT! I want to go higher! I want to go faster! Ugh! I hate this. Can we just sit a while and enjoy the peace?

So, today I am giving thanks. I started the day with a phone call from a solicitor, offering help. THANK YOU! Two weeks until another fund raising event. That someone else has organised. Just because they can, and sadly because they understand. THANK YOU!

And then the post lady came. And she waited patiently for me, as she always does, to get to the front door. THANK YOU! A parcel containing prom shoes for my daughter, to go with the dress she has made, and it's beautiful. Clever girl. Bills. Flyers. A parcel for me.

I open my parcel to find a book called 'The tent, the bucket, and me.' by Emma Kennedy. I read the first page, and laugh out loud. Twice. The parcel also contains a home made cd. Complete with a home made book. This book contained the hand written lyrics of the songs, all of which had a bird theme. Birds, and what they symbolise, have a place in my heart that cannot be rivalled. This handmade book also contained bird facts, for example,

'When birds sing, their brains develop new neurones. Researchers hope that by learning how this happens, it can be applied to the human brain and used to treat degenerative brain diseases.'

I am typing as I listen to the cd. And it's perfect. And you, dear Dawny, struggle to be practical. And you are not perfect. But you are practically perfect and I would not change you. You are kind and thoughtful, even when life hasn't been kind or thoughtful to you. Don't ever change.

This post is dedicated to you in rock star stylee.


My bird tattoo, when it was first done, for my girls and me, back when that's all that was.

Sunday, April 28, 2013

50 shades of shyte. 

It would seem that there is too much rubble and crap for me to clear at present, so the gift is staying buried. 

I live in a house that does not work for me, which means that sometimes I can't get downstairs, let alone out into the world, amongst the living. 

It does not need to be this way, but the powers that be have decided they can't/won't help me. So this way it is. And I find myself in a world that is horrible. Horrible, stunted, restricted and so very limited, all because of this monster, that has taken up residence in my brain and spinal column. And very happy it seems to be, although I wish it would stop roaming at random, creating havoc. But still, at least one of us appears to be happy in our home. My home is like a prison. 

Please would someone help me clear the crap and rubble? 

Saturday, April 27, 2013

I have lost many things because of MS, but I have also gained.

I gained the courage, eventually, to quietly say to myself, 'No more.'

Because of MS, I met my husband.

Because of MS, I have time. And I get to spend it with the people that count. I'm getting better at telling who those people are. Drains or radiators. Remember?

Because of MS, I'm learning to say no. Not always easy, but easier.

Because of MS, I had the freedom to choose to have a baby. And because of the time I can give him, he's happy, interested and sociable. A bonus to complete our family, who's happily playing with a mini bread board next to me right now.

Because of MS I appreciate the little things.
Me, "Thank you so much for cleaning the bathroom/bringing the bins in/hanging the washing out/sorting out the bio hazard that is your room/etc"
Teenager, "S'alright. God, don't cry about it!"
Although that said, this is still a work in process...
The Good Man, 'Did you just walk down the stairs, navigating the bin at the top? Bring it down with you next time please, instead of stepping over it/round it, and empty it.'
Teenager, 'Ugh. I didn't see it.'

So anyway, let us not forget, MS is an unreasonable, life stealing arsehole, that is hard to live with. I have to get on and live, despite it. BUT you've got to look for the gift amongst all that, despite how buried that gift may be. It will be there. Clear the rubble and crap from your life, and there it will be. Seek, and you will find.
And I guess this is a trick we'd all best learn. Sometimes in life, MS or not, things go wrong, and sometimes in a spectacular stylee. But I think it mostly works out ok. If you just let it.

And that's something I have to remind myself of.

Tuesday, April 23, 2013

Disappointed. I feel disappointed. And cheated.

My life was not meant to be like this.

Generally, we have a vision of how we'd like things to go, and what we have to do to make these plans and dreams happen. We learn quite early on, that nothing is set in stone, and that changes may happen.

I hoped I would be a midwife.

I hoped I would have the strength to leave The Bad Man.

But I never thought to hope for the everlasting ability to walk independently.

Check, check, FAIL.

And this is what pains me. I can cope with the wide range of delights that MS delivers. Pain. Fatigue. Numbness. Intermittent losing of fine motor skills..........A challenge for you dear reader, so you get what I mean........try doing up you bra/top/jeans/laces or writing whilst wearing oven gloves.
I can cope with all that. There are ways, and adjustments I can make to make these things do-able.

But not walking independently? THAT I can't handle.

Last time I talked about what I miss. Well here's another.

I miss walking with The Good Man whilst holding his hand.

Thursday, April 18, 2013

Today I was sat on my sofa, right where the sun was streaming in through the window. Beautiful. But sadness came in the form of unhelpful thoughts. I want to take my son out and walk around the village, or even round to my friends houses. I have four that live within a 5 minute stroll. The village shop, also 5 minutes away, is opening again. How lush to go and get an ice cream and sit on the village green, with a tell tale chocolate smile. Or even just to go in to our garden. Christ! I know how to live don't I?

Yes, actually, I believe I do. Living life is best done by appreciating the simple things. Aware of it or not, most of us have a mantra. Mine is 'Take care of the everyday glue.' By this I mean, it's the little things that count, and they soon add up to a big hill of beans. And I could live on those beans. Fortifying, full of goodness and filling, aren't they?

So now I find myself really missing those little things. I want for those little things to be in my everyday. I want to walk around the house holding my boy, and go up and down the stairs with him. I want to share the wonders of where we live with him. And I realise, painfully, what I took for granted before MS. The girls wanting to go to the village shop with 10p after school AGAIN. The youngest being chased by a chicken across the village green, after another 10p shopping spree, and me, laughing too hard to be a helpful rescuer.

So I try not to waste my time, craving what I can't have. I'm lucky, and I know it, but the human condition encourages us to always want more. So here is my battle.
Don't crave what is out of reach versus craving what is out of reach. How do I live with that? How do I live with MS? How do I live with the gaping holes, caused by MS stealing from me?

The everyday glue has a tough job. It's holding me together, even when I feel I'm falling apart. I notice what is missing and I am very much aware of the simple things to be enjoyed. The simple things are what I took for granted. The simple things are what I crave. It's a never ending battle.
And one I can't lose.

Friday, April 12, 2013

Recently I was asked why my blog was called 'Balancing on the edge.' I explained why, and how it covers a multitude of sins and desires. And so I thought I'd best share it here too.
Since becoming an adult I have balanced motherhood, working, learning, friendships, relationships....you know the usual stuff of life.

Well, since MS rudely entered the equation, I feel I've been on the edge of all that. My grip on it all feels decidedly loose.

The usual stuff of life I learned to balance, sometimes more successfully than others. But always feeling like I could learn and develop as I bumbled along. But now, no matter what I do, MS pops up to remind me who is really in charge now. And it's not me. And the irony that my balance is now non existent, is not lost on me either.

I have changed my diet, done exercise like you wouldn't believe, taken supplements, regular yoga and relaxation. And I have still played host to the most unreasonable, destructive, disrespectful house guest EVER.....aka, MS. Now I am on very strong form of medication for MS. And I hope beyond hope that it kicks some manners into the little shyte.

This is where the edge comes in. I can't work, and feel my friendships have suffered. As for motherhood....it's a double edged sword. I don't get bothered by the stuff that I now recognise as inconsequential. And as a result, I have a boy who smiles A LOT! But I don't feel able to be a proper, helpful, joining in, hands on mother. And that makes me very sad. At times, I have felt on the edge of my own life. And society. And sometimes I just want to jump off the edge. I am seen as different now, and that results in me being pushed to the edge of involvement with the everyday. The world is not an inclusive one.

So my world has shrunk, and this makes me protective of how I spend my time, and who I spend it with. Time is precious. A friend cleverly described people as 'drains or radiators.' If you drain me.....adios........if you radiate.......I'll love you forever. And a keeper you will be.

Without MS though, I doubt I would have met my husband, and had the ever smiling boy as a result. I would not have learnt how to say no, despite the lessons the universe sent me, and that I refused to learn. I have a greater appreciation of the little things and time and radiator people. And I feel more patient. Something that I'm sure my family would disagree with.

Well, you can't win them all....






Wednesday, April 10, 2013

People surprise me. In ways that are both bad, more about that later, and good.

By good, I mean out of this world.......listen to this. In the last few weeks, fund raising has been the name of the game. My girls have led the way on this. And people have been making themselves known. And this is because they recognise the situation we find ourselves in, because they have been in similar, and understanding how hard it is, they wish to help. Or just because they can help, in ways practical, and this is sometimes in ways we can't help ourselves. Offers of help have been coming out of the woodwork, and sometimes from people I don't even know, and I can't thank them enough. Really. I really can't thank them enough. And hopefully, because of their generosity and kindness, I may get a bit of my life back. I am very much aware that I'm on my own with MS, and what it's doing to me, but I no longer feel alone.

And that is priceless.