Tuesday, April 29, 2008

Exciting Possibilities!! :D

Well it's been all-go here at the Cullen parental Household.

After a few weeks of flat-hunting, and trans-atlantic messaging and phonecalls and texts and image-sending, I've found one that Meg and I are happy with. I signed the rental application today, and I have to wait 48 hours for my details to be checked out and for it to go through.

So, very soon I could be in Meg's and my new flat!!

:D

It's very exciting, we're really pleased with it, and because it's two bedroom, we could have guests stay eventually as well!

If there's any hitches (which there might because I've been low-income for a long time until I got the Manager's job - now I'm up to just below average - Christian Retail for you!) then my Dad has agreed he can step in as Guarantor for us.

Here's hoping the next 48 hours will hold some good news for us!

:-)

Sunday, April 27, 2008

Wednesday, April 23, 2008

Isolation?!

It's just occured to me that I might seem a bit of a strange one if people really got to know me in the ms blogosphere, since I don't belong to any local chapters, or groups, whatever you'd call them, and I only know one other person with MS in the "real world".

It might look like I'm living in denial, I'm not I can assure you, but I don't tend to think about it alot, because I figure it's just better to get on with things, as there are a lot more people worse off medically speaking than me.

I'm not that bad, sure I feel tired alot, I get spasms and my legs feel like lead alot of the time, but apart from wierd sensory symptoms I'm not actually that bad and have a lot to be thankful for. When I was first diagnosed, just over five years ago, I went into a panic, and looked at groups locally, but (and correct me if I'm wrong people please!) my local MS group seemed to be very poorly organised, and full of older people who had had the condition for years and years, and were quite disabled. I felt kind of out of place, but was confused as when I attended a newly diagnosed session organised by my local MS nurses, there were loads of people around my age there. (I was 29 at the time)

I went to look at the website of my local group last week just out of curiosity, and the website is exactly the same, and the same dates on it even! It just looks old and dated and out of touch to me, and frankly puts me off. I do feel a bit isolated at times though...

Would anyone know of a group that meets in Liverpool UK, young adults, twenty or thirtysomethings? I've not found anything, though I guess I could ask my nurses at my next appointment.

One of my biggest fears was realised the first phone call I had with one of the main organisers of the group, who I'm sure was in his sixties (no offense meant, I just mean in comparison to me) and was very very negative. I guess once the MS really kicks in, and you have to endure increasing levels of disability, it must be very difficult to remain positive and to lighten up, but as I've not experienced that yet, it's hard for me to understand. Not that I'm saying that we shouldn't share our hurts and struggles, just not all the time constantly!

I was put off my local group, because when I spoke to the gentleman, he obviously asked me when I was diagnosed, and what symptoms had brought about the diagnosis. As soon as I had told him, he basically replied with "well it'll get much worse than that don't you worry", and also "you work full time? Well you'll have to give that up eventually... I did, you know" which I realise is true, but wasn't exactly the best thing to tell someone when they're newly diagnosed!

Maybe it's that experience that put me off, maybe it's just because I can be quite introspective at times. *sigh* I don't know.

I've been thinking lately that I want to meet with people with a similar experience of life, but I don't want to meet just to moan about my symptoms, or discuss ailments or treatments. Heck, I can do that when I'm older with practically anybody, and probably will!!

Are there any positive, fun groups out there with normal people in them?!

(gee, I know this post sounds harsh, I was just being honest!)

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

Nuff Said.




(* = My nephew Jacob)

Monday, April 21, 2008

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.

Saturday, April 12, 2008

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?!

Friday, April 11, 2008

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!!

Thursday, April 10, 2008

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

Sunday, April 06, 2008

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?

Wednesday, April 02, 2008

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...!!