It's Been One Of Those Days... *

Nuff Said.

(* = My nephew Jacob)

Wow.

Mytalented sister is at it again.

Her friend (Jay Norton) has produced one of her songs and given it an electro/dance feel, and it's so good, I honestly would buy it. It sounds incredible, I'm trying to encourage her to send it to Radio 1.

Anyway, before I brag anymore about my sister, here's the link:

Ruth's Player

The song is called How Long, though she has other songs of hers on there.

How Long just blows me away, it's so professional!

Go Ruth!!!!!!

:p

Sense & Sensibility...

So, I haven't really had a good week, and I find myself getting ready for work not having had a good weekend either.

One of the wierdest symptoms of M.S, I've found, is one that starts when you've overdone things. Your body kind of rebels against you, and the only way I can try to describe it, is that your whole body feels "on edge".

Everything you touch literally gets on your nerves, and you long for the numbness to come back. Seriously, it's like your sense of touch goes nuts, and everything you accidentally brush up against, or knock into (your balance is usually off as well so this happens alot) sends your senses reeling.

You find that you have a background sense of irritability as your nervous system goes into overdrive, and everything upsets you, to the point where you want to shut yourself away from the world and go lie down in a darkened room alot, or go be a couch potato and let "Doctor TV" try his mind-numbing therapy on you.

I've hardly done a thing this weekend, mainly because my body had had enough. There was one point last week, where I was so stressed in work, that I started getting dizzy out of the blue and had to stop for 5 minutes to go and have a cup of (decaffeinated) tea.

The hardest thing I find about all this, is sharing it with others. I should have talked to Meg about it, but when I'm really tired and fatigued, I find it hard to find the words and express myself. It's like my brain is emmersed in thick pea soup and there's a constant fog and mental block to battle against.

I'm hoping today will be different.

Frustration Part Deux

*sigh*

My computer (desktop) is very ill. It's only about three years old, but it seems the usb ports are failing on it. (apparently I've overloaded them and caused a permanent conflict in the main usb circuit board)

I've sent it away to see if it can be fixed, and meanwhile I'm using my Dad's laptop during the evenings, but I'm not holding out much hope, because hard wired usb's are notoriously hard to fix apparently, and just putting in a temporary one doesn'y work for my Voip Phone, it has to be hard wired...

On the health front, I've been having very painful itchy swellings on the soles of my feet and also near my arch and on my wrists stretching down towards my little finger. They almost look like an injection site reaction, being very red and angry and swollen, and then after a few days they die down and then reappear again somewhere else!

I've had this problem for more than a week now, and it's very uncomfortable to walk on at times. The desire to scratch the affected area is almost more than I can bear, and so far my local G.P. has no idea what it is, and the M.S. Specialist Nurses say it's nothing to do with M.S. (and I quote) "because M.S. is an invisible disease, it doesn't have physical symptoms"...

Right.

Tell that to my muscles in my legs when they twitch and spasm. Tell that to my waterworks that aren't working properly at the moment for which I will (in a couple of weeks as I'm waiting for them) be self-catheterising myself on a weekly perhaps daily basis.

In fact, tell that to my back that often has severe lower pain, and also to my whole body when I've occasionally run out of spares, and am down to my last teaspoon!

I just don't know what it is, it happens in work and at home, sometimes it looks like an insect bite but I've compared the cleaning chemical stuff at work and at home and they're completely different. I'm very good with personal hygiene, it's not mites or anything, if it was my shoes that I wear, why would it have started randomly this last week?! Besides, my doc examined my feet and said that my arches were fine, no collapsing, etc. You don't have lymph nodes in your hands and feet, so thankfully it can't be any nasty white blood cell stuff...

The only thing my poor G.P. made a guess at (and he admitted it was a guess!) was that it was possibly arthritic, as the swellings had happenned near joints. Why would I suddenly have developed arthritis though?! I don't have a physical job, and yes I walk a lot cos I don't drive, but not any amount that is excessive?

I really have no clue and I wish I did, it's extremely annoying to have no answers to this particular malady.

Any suggestions I can look into, apart from me developing a resistance to Copaxone? (I'd thought of that, but my Consultant thinks that Highly unlikely, I'd be the first person literally to do so, and besides, I've only been injecting it for maybe three years)

*sigh*

Any suggestions of areas to look into anyone?!

Frustration.

Summed up by one word when you are enduring a 4,000 mile separation from your wife-to-be...

COMPUTERS!!!!!!!!!!!!!!

Nuff said.

Hmmmmm...

It's 7:30, I'm up and about to pour (decaffeinated) coffee into my tired body, and prepare to go to work.

I'm normally more of a morning person, but this week it's been an effort. Thankfully today I feel a little better, though I have a very busy day ahead of me. I've got a rep first thing, and then I have to chase up two Bookstalls for two Events, get on top of all the shop accounts invoices and paperwork (I did the majority of it yesterday thankfully!) and then stop for some lunch.

Then, I have another rep in the afternoon, Timesheets for all my Part Time staff to do so they get paid at the end of this month, arrange a Leaving Interview for one of my staff who is retiring next week, prepare all the paperwork and training documents for her replacement; then I have a brief interview at our local BBC Radio Station to talk about the Promotion we're running as a chain at the moment "Bibles For India".

The basic idea is that we're encouraging people to give us all their spare/old Bibles so that we can parcel them up and send them to our brothers and sisters in India, many of whom don't have their own copy of the Bible.

Hopefully we'll get a good response after the interview starts airing from Sunday onwards!!

I hope I don't start to fall asleep by that stage in the afternoon!!

Down To Basics...

Ok, I should have done this a loooooooong time ago, but for those of my few readers who enjoy healthy lives, and want to understand an analogy of what having Multiple Sclerosis is really like, whether a mild form or not, please click on this link.

It's a very well-known analogy in many circles, but particularly for M.S.

It'll maybe give you an insight into how it feels at times.

Right, talking of spoons, I'm off to bed because I should have been there 30 mins ago...

Compassionate "Mercy-Eating"...

Lonely?

Lost in the bottom of the barrel, wondering when that special someone will come to find you?

You're aware that you're different from everybody else, people are harsh and judge by appearance and you get left behind all the time...

Forsaken and lonely, you meek out you're existence while your world crumbles around you as you see your colleages chosen over you every time...

Well don't worry, little lonely broken Custard Cream, I will choose you!!

:p

Out With The Old, In With The New?!

It's a common theme for me these days.

Whether it be with work, my spiritual journey, or my relationships with the people I love, at the moment I'm being constantly called to renew things.

Whether it's a new renewal of my commitment after being away for two weeks to make my shop as successful in spiritual things as I can; or a committment to make my relationship and forthcoming marriage to Megan as strong as it can be; or a commitment to knuckle down and find out what God really wants for my life and be the disciple He wants me to be; frequently at the moment I feel a desire to set out on roads I've not gone down before, and it's scary and exciting all at the same time.

I've been in my new role at work for a little over three months now, and I feel like I'm only just scratching the surface in terms of the changes I want to make and the impact I want the shop to have in local ministries and in being a resource centre for the Church as a whole.

I've got plans, but plans, as we kinow, take time to develop and build, and I'm finding that frustrating, because I'm such an impatient person. My dad always tells me about when he goes as Pastor to a new church, he waits a few months to see how it operates, and only when he sees how things tick after a while, does he make suggestions of change. It's very wise advice, though not entirely the same situation, since the shop isn't new to me, and therin lies my frustration. I need to see it with fresh eyes, to have a vision for what it could be and not just what it is now.

I guess I could say the same in my relationship too. There's alot of frustration there too. Not with Meg, but rather with being separated from her by such a vast distance of ocean. With being so near on the end of a phone every night, but yet so very far away. With all the stuff we still have to do connected with the visa for her, and there's only four and a half months left!!

I'm living with frustration in where I am on my journey with God. I feel like there's so much more I need to learn and grow in, and so much more I could be doing at the moment, but so little time I have to do it in. I just don't want to be one of those people who look back in twenty or thirty years time and say "if only" over and over again. I want to see God do amazing things NOW.

That's my problem.

Impatience.

I guess we all live with it to some degree, but I'm reaching my threshold at the moment, and I think God is purposefully allowing me to live at this level of impatience so I'll learn to trust in His Sovereignty more, and stop trying to make a go of things and solve things myself.

So, welcome to the place I live, it's called Limbo! The space between faith and fear, between hope and despair, between courage and cowardice. I feel the challenge constantly at the moment, do you?

The Dangers Of Being Tired...

I've had a long week, and it's only Wednesday, so I knew I was in for trouble even before I received the following email this morning:



Subject: You won the sum of £485,000.00 GBP from Yahoo! Msn Awards

Date: Wed, 2 Apr 2008 00:00:10 -0400

From: yahlt11@aol.com

To:


You won the sum of £485,000.00 GBP from Yahoo! Msn Awards, you are hereby advice to get back to us by contacting with your Clearance Officer REV FATHER JOHNSON for your Claim.Agent Name: REV FATHER JOHNSONE-Mail: rev_fatherjohnson2006@hotmail.com Tel: +447031848598



As soon as our agent hears from you, he shall commence the process that will facilitate the release of your fund to you. You are therefore advice to furnish your claims agent with the below informations



FULL NAME:......................................................

COUNTRY:........................................................

HOME ADDRESS:................................................

MOBILE NUMBER:...............................................

HOME NUMBER:.................................................

AGE:................................................................

SEX:................................................................

MARITAL STATUS:............................................

OCCUPATION:..................................................



Yours faithfully,



Mrs. Carol Jones

On line co-ordinator for

YAHOO AWARDS & WINDOWS LIVE PROGRAMME,

Sweepstakes International program.



I was very tired this morning, and my mischievous side was raging as I'm fed up of getting these types of scam, so I decided to reply:

Dear Rev Father Johnson,

Thank you for your kind offer, I must say I was very surprised to hear from you as we haven't spoken in years!! How is your wife doing?

Is her leg still bad with the varicose veins, and does she still have trenchfoot? I hope her leprous acne is not giving her too much trouble? I do hope she is well, as these things can be very nasty at times, and I was only saying to my mother the other day how dreadful it must be for her.

I didn't realise you and your wife had gone into International money awards, it's a step up from a carboard box in Chippenham High Street isn't it!! Well done you!

As I know we're life-long friends, could I ask a small question? If I were to provide you with my details as you requested, could you first send me your copy of your data protection certificate number, so I know they will be kept safe?

Also, if you could let me know how exactly you want your agents to be furnished? Would you like velvet or perhaps kashmere would be a nicer touch as it is smooth to the skin and very lightweight. If you are employing people in the Secret Services, then perhaps they should be taught what is appropriate to wear when they are killing, chasing and tracking people? Only my opinion of course, I haven't reached the enormous echelons of business and power that you have!

Please pass on my regards to your wife and 50 children, I look forward to hearing from you my friend;

Yours Affectionately;

Englebert Ramsbottom.

We shall see if I get a reply...!!

Carnival of MS Bloggers

The latest contributions are out, you can find them here.

Please go read!

It's Us!! Have Our Autograph!!

To Pee Or Not To Pee...

Well, it's reached that stage.

The stage where I have to stop pretending I don't have M.S. and face the facts.

It's funny, when you have a relatively mild form of MS like I do, with only occasional muscle spasms, a lot of tiredness (as opposed to fatigue which I KNOW is different, because I've experienced it!) and occasional annoying things like facial ticks, it's easy to just lie to yourself that nothing really is wrong with you, that injecting yourself everyday with copaxone is a normal occurence, but then something happens.

I've had problems for the last year or so with my waterworks and bowel movements, (gee don't I sound like a 180 years old or something!) and even now just typing this out makes me writhe with awkwardness inside, but it's a problem I tried to ignore and just get on with, that has got increasingly more frustrating and embarassing. For the past six months I've been seeing MS nurses and Continence nurses, learning neutral terms like "leakage" to discuss issues and situations I've found myself in occasionally that are not horrific, but certainly embarrassing.

The problem is, they've become a bit more frequent than just occasionally, and after months and months of me putting it off I've got an appointment next week at the Continence Clinic to teach myself ISC. This means Intermittent Self-Catheterisation, maybe two or three times a week, and in layman's terms for those of you out there not familiar, involves sticking a tube up areas that have never seen the light of the sun.

As a male, apparently it's alot easier process to go through, but takes a lot longer tubing for obvious reasons. (why can I not hide a male ego based grin when I type that? - I wish! heh! ) I've watched the video, with reactions between mild horror and faint amusement at my Dad's reaction when he merely looked at the diagrams, (I saw him physically recoil and say in a loud voice "oh son, no! no!") and I'm now mentally ready to start learning the process.

Comments made in an understanding way like, "it might hurt the first time, and when you get to the Sphincter muscle before the bladder, pushing it through that might hurt alot and you might pass out" didn't exactly help my enthusiasm for this treatment, but needs must.

I've decided to approach this in a scientific, cold, emotionless manner, much like a boy looking at a small bug under a microscope would. (please don't draw any conclusions from the microscope comment - Ed) Whether this approach will be successful, or whether I will run screaming like a 12 year old girl from the room, remains to be seen.

I guess most guys wouldn't have a problem flopping out their member in front of a female nurse, but I'm a little different that way, it will be a highly embarassing situation and thoughts of a sexual nature will be the last thing on my mind when I attempt to stick a tube up.... actually never mind the description, I feel nauseous just thinking about it!

Needless to say, I'm not looking forward to it, but I know it will be better for me in the long run, and hopefully be a relief in more ways than one. When I first started injecting copaxone, more than two years ago now, it felt very strange and alien, I guess this is just the same. All part of the "fun" and crazy journey of MS.

Well, those of you who do, please say a prayer for me on Wed 26th at approx 9:10 am GMT, I'd appreciate it...

An Extremely Nervous Guy.

Longeth Time No Speakee...

Yes, yes I know.

One thing you should know about me is that Procrastination & Laziness are two of my greatest Gifts, however they are not being used much at the moment!

I'm so blummin' busy!!!

Anna, my new Senior sales has started, and I'm in the midst of training her at the moment, which is interesting, as if you've been at any workplace a long amount of time, you tend to just do things on autopilot until you have to explain them to someone! :p

The last two weeks were fantastic, I spent them with the love of my life, and we got quite alot of wedding stuff organised for August. (the big day approaches...)

Anyway, I have to be off now as end of lunchtime approaches and I have lot's of... well... Manager-ish type stuff to do...

Bye!!