BIG apologies!

Ok, I know it’s really myself I ought to apologize too for not having blogged in a long while, but… I guess I’ve forgotten that blogging isn’t about the big things in life, that blogging is all about the day-to-day… So, I am renewing my commitment and I will try harder – you can hold me to that!

Testing, testing…

Ok… This is a test of Windows Live Writer and also also Simplaris Blogcaster… Hopefully, writing this in Windows, it will not only appear in my blog – http://lpscott-ms.blogspot.com/ – but also then also Blogcast will publish in Facebook for me… I really must blog more, so hopefully these tools will help :)

Yes! It works too! App –> Blog –> Facebook all in one now :)

Wow, it's growing fast!

LifeChurch.tv is growing really fast... Check the link above for details of when YOU cn join one of the Experiences!

MS Week UK

It's MS Week in the UK. Read more at http://www.msweek.org.uk - click the caption above to view the MS Soicety's website.
Please post in YOUR blog to raise awareness.

Outreach... Reached out!

Another good day so far!?!

Just had my first appointment with my Headway Devon Outreach Worker and met his manager too to introduce us. Think Tom & I are going to get on really well. Looking forwards to getting out & about with his assistance to regain my confidence, etc. Tom's assistance will help me get my confidence back and hopefully stretch my desire to get out & about too. My mobility seems fairly good, so... It will be interesting to see how things progress!

Looking forwards to when I eventually get some proper furniture here in the lounge (been waiting on Argos' suppliers for months!) so then my sun chairs can become patio furniture on the little patio outside my french doors rather than my lounge chairs as they are at the moment!

I'm so lucky with the location of this council flat - more an apartment really! - looking out on a large green area, river (down a bank) the other side of it. Hustle and bustle of traffic off in the distance but... I think I've found my haven!

Putting the Pieces Together

27 April - 3 May sees the MS Society here in the UK celebrating MS Week.

"MS Week is a chance for the MS Society to get loud about multiple sclerosis (MS), raising awareness of it by reaching out to people who don't know much about it."

Please take the time to have a look at the MS Society's website - click the title above to go straight to the MS Week feature on the MS Society's website."

Just been to a LifeChurch.tv experience and preparations are well under way for One Prayer 2009...

This June, take part in an extraordinary worldwide experience: One Prayer 2009. Unite with churches around the globe to share, serve, and give: http://www.oneprayer.com/

One Prayer 2009
Sharing. Serving. Giving.
One Prayer
The Church stands together.

Blog 'diversification'

I know when I first started blogging I set out that this was going to be specifically an MS-related journal.

However, I've realised - as time goes by - that whilst MS is always going to have quite an influence in my life, it doesn't define my life... My friends, my family, my faith, my day-to-day are all part of me - they're what truely define me...

So, I'm going to try to continue to blog more regularly but... I can't promise it'll always about MS cos... That's not what I'm all about!

For anyone reading this as specifically an MS record, I apologize but... Hope you'll stay with me and... Hope you'll let me know you're out there too!

Ok, so I... got distracted...!?!

Ok, yesterday I said "first of all", but nothing followed...

Well, life's going pretty well atmo - some aches but no real pains, thankfully! Inffections / cellulitis etc seem to be well under control as well as any associated swelling / fluid retention etc.

I actually feel pretty much 'normal' now... In fact, I do feel better than 'normal' cos I know what's behind aches, etc... I'm loving my new home - Exeter City Council (under the stewardship of my Social Worker, Juliette Hill) have done me proud finding me this spacious, ground floor flat with wonderful views all round (I'm right by the river!)

On that note, I'm still waiting on follow-up from my visit by Headway but, yeah... Now that I'm settled here & this place really 'feels' like home, now that my confidence is - slowly - returning and I'm getting 'used' to the rollator (see earlier post), now that I'm growing to - still v gratefully - accept the assistance of my carer(s) as being 'normal' and now that I'm growing to accept that... "Life goes on..."? ...I guess that's why I've been letting my blog slip...

I know... Poor excuses, but...

Have You Ever Considered the Internet a "Mission Field"?

Have You Ever Considered the Internet a “Mission” Field?

Posted using ShareThis

First of all...

First of all... Time for me to to say "sowwee"!

Not just apologizing to you, my readers, but also... Hmmm, apologizing to myself seems kind o' weird, huh?

I guess I'm acknowledging the loss of discipline I had hoped to build up. I'd lost the sense of acknoledgding and expressing how I'm feeling but... I'm hoping - no, I will - get back into the habit, I promise!

Signs of madness...

They say it's a sign of madness to talk to yourself. That's exactly what it feels like I'm doing here... I know I've said before it helps to sort thoughts out, etc, but.... Oh heck, I don't know!

As for today...

Thursday... Nothing major to report, really... Didn't spend quite so much time at the PC, which felt good, but...

Progress!

No, yesterday I didn't actually get outdoors, but...

A really great lady - Penny Bloomfield - visited me from Headway Devon (http://www.headwaydevon.org.uk/information-c-3.htm) to introduce me to the organisation and evaluate what services they could offer me. (I should have blogged this sooner really but, anyway, here I am, so...)

After my appraisal and the bit I'd read on the web, etc too, my opinion of the work thaty Headway do has really change and I'm looking forward to receiving their support. The main purpose for my referal from Social Services was to increase my confidence moving around, including getting out doors, etc.... My confidence hasn't been great for a long while, but since my (non-MS related) fall over Christmas (Okay, I was pig-headed when offered help picking something up and overbalanced! [Yep, I'm big!]) my confidence - and sense of balance - has vanished. I think my diagnosis back in November certainly did explain my on-going problems in this regard though.

Anyway, Headway are willing to work with me - I'm waiting to be assigned an Outreach Worker - to look at helping me increase my confidence but also to address other issues I have with iother aspects of my mental wellbeing.

I look forwards to meeting the person who'll be working with me and moving forwards, into a brighter, fresher future...

Enough to say...?

To tweet or to blog - that is the question....! Well, I think I have enough to say to "justify" a blog entry.... If it's not then... Tough - this is my blog, I decide! :P As you'll have noticed though, I've now add a Twitter gadget above so, when I do tweet, you can catch that here too :) Anyway... Here goes...

Same old...

I guess that - given this is an MS blog - the fact that I have nothing to report is, in fact, a good - a great! - thing? I'm even pleased to report that - with the good weather ion the last few days - I've even found myself wishing I had the confidence to get out in it! I haven't yet chased up what's happening with the befriending services I've been offered by Social Services, but it does feel good to be moving on...

Mobility is... Doing pretty good! I'm pretty much back to normal, other than the fact I'm still using my rollator rather than a stick At the same time, though, the incresed confidence it's giving me means I'm moving faster than I probably was before, so... Well, time will tell, I guess!

New layout!

Yep, I've spent time today redesigning the layout of my blog, so please do click follow if you'd like to keep up-to-date with my entrie... Hope you like the new design - hopefully things are a little more accessible and easy on the eye! I'd really appreciate knowing whose reading me and any comments you may have!

"Almost" normal!?!

Ok, today is another good day. As the title suggests, today I do feel "almost" normal - as normal as I can get, that is! :P

I got up just after 9 after a reasonably early night. I was stiff - but only cos I ended up sleeping on my back half the night! I was up shortly after 9, took some paracetamol and came & just chilled in front of the tv. The pain soon lifted and I relaxed til 11ish, then I relaxed online for half and hour or so 'til Adrian, my carer, arrived.

Once Adrian had been, I even felt good - and inspired - enough to properly review my finances, taking print-outs etc too. I was consdidering writing to my bank manager to look at consolidating some debts then remembered I have a sofa on order (since late Jan!) which will be on 6 months interest free credit so... Need to keep some funds available for that! Definitely want to consolidate though but that's on the back burner for the moment...

Anyway... Back to how I'm feeling, etc... Then felt good enough that... I made myself my own very nice, very tasty 'proper' lunch... Peppered beef salad rolls - tipped salad bags (al fresco and sweet & crunchy salads) into a mixing bowl, tossed them to mix well, bagged some up in a special bag (supposedly I can shake the rest dry to help it keep? I've had them for months so good to finally be putting them to use!) then proceed to fill 6 soft rolls - 3 kept for tomorrow - with peppered beef, salad and slices of beefsteak tomato. Added some (squeezy) mayo to todays 3 and... Mmmmm, they were good! Followed those with a fresh cream choux bun and some strawberries & cream... Yep, I'm packed!

Weather's good enough that I've had my french doors open on the security chain most of the afternoon! I guess the weather's helping too but... I actually feel like I'm moving around pretty well, feeling more motivated & generally reasonably in control of my life!

Thank you for reading, thank you for being interested - I look forwards to maybe even hearing from you!

Mmmmm...

Ok, this is not strictly an MS-related post, but...

While my carer was here today, he put a lasasgne & garlic bread in the oven - he reminded me I'd chosen to leave them out when putting my monthly shop away yesterday. Mmmmm.... Oven-baked lasagne (not microwaved) :) with garlic breads & special mixed vegetables followed by fresh cream slices...

I guess the relevance of this is actually on 'bad' days, I ought to learn to swallow my pride and ask Adrian (my main carer) for extra help... Today, actually,though is a good day - I got an earlyish night, I slept well & was actually up early enough that Anita queried why!?! I got Adrian to cook up the food for me purely so I remembered to use it - it came out of the freezer yesterday (to make space fo this month's shopping)... But, yes - I can't deny it was really good to sit down & have a nice meal put in front of me!

Wow- 3 whole days?!?

Apologies, folks, that it's been 3 days since my last post. Apologies to myself more importantly too, I guess cos this is becoming cathartic...

Anyway... Just a quiet, non-eventful day on Friday - nice though! Did actually get some sleep Friday night - chose to turn up to the party at Club XFE in Second Life (http://slurl.com/secondlife/Phasma/66/182/138) fashionably late so could get some sleep first. Nice party then went on a treasure hunt with Anita which we've been doing weekend before too... - again in Second Life. It was great to spend time with her, as ever - who knows where it will lead in the end, but... I carried on with it into the evening too once I'd finished my grocery shop (oops, another long day on PC?!? It is so good to be able to socialise, to relax in good company and meet up with good friends and to do the "real life" stuff conviently from home too!). I watched some programmes on the net and spent some more treasure hunting and... Before I knew it was 3:30am...

"Why am I recording all this in an MS blog?", you may well ask...! Faecal incontinence then decided to kick in :( I almost made it to the toilet but... Managed to decorate part of the bathroom floor - sorry for the details, folks, but... - and some of the toilet bowl... Think I finally made it to bed about 5;20am once I settled down...

Thankfully then a much calmer Sunday followed! I slept in pretty much til my carer arrived and he helped me clear up then went back to bed 'til midafternoon... I had a really good night's sleep Sunday night having enjoyed a brand new series at church (http://internet.lifechurch.tv/ - Church online? Seriously.) Other than that I was glad to have a quietish day!

Bladder incontinence has... Pretty much been under conrol recently... I'm still glad to be using pads cos of "leaks", etc, but... Other symptomsa are pretty good too atmo, not even needing paracetamol really - though a single dose does seem to help... Thank goodness I don't need anything stronger atmo...?

Oh, only other "news" was my monthly shop (you guessed it - online!) arrived today and it does actually feel good to have lots of fresh fruit & veg in the house, etc... Now just to have the discipline to cook, etc! My carer looked after some nice streak burgers and fresh baguettes while I showered this morning (once he'd unpacked all my shop with me (well, ok - under my "supervision"!) and... I think fruit will do for rest of evening! (oh, ok... And maybe some doughnuts/fresh cream cakes too - hey! I only shop once a month! :P Choux bun or cream slice? I decide!)

Good day again!

Woke up feeling a lot fresher this morning :) Woohoo! It makes the whole day go so much more smoothly... Ok, only did odd little jobs again but... Yep, I did "something"!

Dunno why it took me so long to get into this but... Feels good to be blogging too!

Mid-afternoon, got a call from my uncle. He was up atg headquarters of the company he works for - up in Hertfordshire, apparently so I assumed it was just part of his drive home. He has called me before when on the road or whatever, so thought nothing more of it... 6:15pm comes around and... Uncle Geoff calls again to say... He's at the end of my road! Turns out he was actually in Southampton and was checking I was home for the evening then drove all that way to come visit for a few hours, see my new home, how I was getting on, etc! What a lovely few hours! Hope he's getting on ok now with his drive back to Essex.

Twists and turns...

Ok... This morning, having slept well, I'm stiff (even after taking my usual paracetamol), I'm fatigued and yawning at 10:30am... Grrr...

A positive today!

My original caption was I achieved more today, but... Nah, other people helped me achieve more... Still...

I'm feeling better - for the moment - for being up & about earlier, for not spending half the night here on the PC & for breaking away rom the computer too... I feel better for being more ctive, for walking better. I feel better cos Social Services are arrranging a befriender to assist me in gaining my confidence out & about. I feel beter cos I updated my To Do list yesteday and I have actually done the majority of it over the 6 wereks since I drew it up. My carer seemed to have more time this morning, seemed to achieve more. Working with my cleaner, I got two cupboards pulled out, shelves re-arranged, stuff put back in in an orderly fashion... Ok, I supervised, but... Yeah. Maybe there is something in this PMA stuff, just maybe.

Eat well & prosper

As I mentioned previously, I did have brekky today and am trying to think more about getting back on track with "structured eating" - proper meals, meal times, etc...

Though this *munch, munch* chewing gum keeps my mouth busy, I'm sure OD'ing on it doesn't do me much good & I know my system needs all sorts of nutrients too... (Talking of which, must get into habit of taking my vitamins too! Ooh, it's Monday - good day to start!)

On a plus point, I AM taking my meds regularly so... All good, I guess!

It's not difficult, really!

Just reminding myself I really ought to blog more often - sorry for the gap folks!

Who's that in the shadows?!?

I know I've got one follower - *waves* Hi Ali! - but I hope maybe I've got more readears too s& perhaps some people joining frtom ther MS Help & Support Group in Second Life too? Don't be shy, come forward & I'd love to hear from you!

Today is a good day...

Today I woke up refreshed, got up and did stuff around the kitchen, sorted my own breakfast, juice, etc and was wide awake & sparky once my carer arrived. :) Must get back on track with regular eating cos I ate very little over the weekend.

Spasticity today is... A bit stiff but totally manageable. Bladder control is all good at present - though my carer alerted me I'm running very low on pads - oops! Spoke to the Incontinence Care Team & seems were delivered to old address back at start of January! Ug! The clerical guy I spoke to is flagging it to the nurses & will see what can be arranged - eg emergency delivery.

Spatisticity

Hmm... A bit stiff this morning... Slept really well but am feeling rather stiff... Question is... MS or computeritis?!?

A quiet weekend,,,

Nothing major to report folks, really - another quiet weekend!

As far as the stiffness, as Christopher11 put in in response to me raising the issue on an MS Society forum (same post as below), "We have ms every day". It's easy to forget that, though my type of MS remits between relapses, it doesn't go away. I've got to learn to live with the 'bad' days, try not to let them get me down too much and remember that low days are "ok".

Stiffness

Ok, yesterday was a really stiff day... Used to just write them off as 'me', but now.... Am I just writing too much off to MS, or... Do other people get days where just moving around is hard work....? Thankfully better today after a good night's sleep...

Feeling goooood ;-)

My home's coming together - carer and cleaner now fully on board and working well. My new vertical blinds arrive tomorrow AND my girlfriend wasn't too mad at me about the bouquet I arranged to surprise her at work (she was away for Valentine's Day itself)...

My new vertical blinds have just been installed this afternoon - I think I should perhaps have gone for a colour but otherwise they're aboslutely fab!

On an MS note, sone stiffness but otherweise absolutely fine today, thank goodness! My mood's pretty good - I think other things going well definitely helped! A good day. :-)

Non-MS, but...

Hey, I know this is supposed to be my MS blog, but...

I just wanted to use this opportunity to tell everyone a little about the wonderful young lady I'm so lucky to share some of my life with... Anita (pictured above) & I met through the virtual 3D world of Second Life (http://www.secondlife.com/) and quickly became friends in "real life" too. I've been lucky enough to meet her back in August and we had a wonderful week together and quickly grew close - the bad weather really didn't seem to matter...! I'm so lucky to have met such a gorgeous, charming, beautful young lady who takes me for who I am and accepts me with all my faults!

Things in life have been getting her down, getting on top of her - as she says herself, her plate's not just full but overflowing! It has taken me a few months to learn to back off - I'm sorry for that & thank her for her patience - and I'm so glad that we've now reached an understanding that my love truely is unconditional and that we're friends forever, that we see what the future holds... I still do find it hard sometimes to keep my feelings under control but... I'm trying (very trying, I know!) and we've agreed a code that, when things get too much, she can throw a (virtual) book at me... It feels so good for "us" to be back to how we were now I'm learning to keep a lid on things!

However, it's almost Valentine's day so this has got to be said...

I love you, Anita... Truely, deeply, always & forever and totally unconditionally... *senses the incoming volley of books!*

Not posted...

Not posted for a few of days, I know... Not really got much to say, I guess...? Still getting into the habit too...

Symptoms wise, some stiffness atmo but othwerwise, thankfully, all pretty good. My carer & cleaner both commewnt my movement's getting better so, hopefully, things are on the up!

In saying that, mobility is gradually getting better and bladder control seems to be returning, thank goodness.

I'm graduaslly learning to 'trust' my new rollator - had it a week now - although, with a tiled floor, mainly still keep the brakes on (rear wheel braking)! That way it doesn't "run away with me"!

Still undecided about taking paracetamol on a regular basis (my carer voiced concerns re liver damage. etc) but, hey, my MS nurse knows I'm taking it (it is prescribed) and I'm not needing anything stronger yet, I take soluble type (which presumably is more easily digested?) and I very rarely take the maximum daily dose, so...

Anyone got any experience/knowledge on this? Either way, if you are reading this, I really would love to hear some quick hellos, etc just to know I'm not just typing to myself, as cathartic as that is!

I WILL keep this up-to-date...

I will, I will!

A better day today!

I woke up today about 9ish having had a good nighth's sleep, laundry all collected by my local launderette (free collection & delivery on service washes) despite the snow on the ground and then went back to bed, dozed with my usual BBC Radio 5 Live on then was up & about getting fresh clothes sorted myself instead of relying on my carer to get me just basic t-shirts & undies out (all I wanted).

Once Adian (my carer) came - an earlier visit today - I had a good shower and got the decent clothes on, feeling reasonably steady on my feet. Confidence is still... Lacking, but getting better :) I'm sure the frame will help too... :D

I'm starting to get to grips with settging up my budget now I'm in my new home. I feel really fortunate that my Social Worker got me this lovely, spacious, really accessible flat right on the quayside. Still not getting out & about but... That'll come! Anyway... Who wants to get out and about in this cold, snowy weather?!?

Still, nice to look out on the snowy green behind my place though!

Monday's update - only a day late!

Ok, so I didn't succeed in my first day's blogging! Anyway, here I am, so... Let's begin!?! Starting with Monday's update in this post...

Sunday night was actually a reasonably decent time getting to bed, slept well anfd woke up refreshed but... Then the fatigue kicked in once up & about... Even dozed on the loo 'til my carer arrived :( Thankfully got better as the day went on...

Still using a chair back to aid my stability/ confidence getting around in my flat. Just a stick doesn't saeem to be quite enough. Saw physio last week and she's arranging a "walking aid" - guess that's frame? :S Still, be good to use something proper I guess... Hopefully will help address my posture etc too so I get my confidence back to ditch it asap!

Emotionally... Hmmm, had a low patch during thew fatigue spell, but... Generally an ok day...

Really glad to have got things sorted with my 'girlfriend'... Used the quotes cos, well, we're great friends and... Who knows what the future may hold! I love you so very much though, Anita!

Updates start Monday!

Ok, I'm giung to get a real habit going of updating my blog regularly so... I think my bloggingh proper starts on Monday! Wish me luck!

Last November...

Last November I was diagnosed as having multiple sclerosis (MS). I intend to use this blog as a place to recored my symptoms, my feelings, my emotions and hope you'll join me along the way!

Regards,
Laurence