About Last Night…

Last night there was a pub quiz. It started at 2000hrs, so we left at 1920hrs to shout up to a friends window & bully him into coming along and we got to the pub at about 1930hrs.

I ordered my favourite drink – well, my favourite from the selections available – Thatchers Heritage cider. (I’d rather have Thatchers Gold, but my local doesn’t sell that at the moment).
Anyhoo, I sat outside in the waning temperature (it had been 30+°C, so it was still very warm) with a pint of cider and we waited for our friends and teammates to turn up.

I had only drunk half that pint as we went indoors. It was early in the evening and I was anticipating being there till closing time at 2300hrs and possibly beyond. So I wanted to take it easy. If you actually know me in real life, you’ll know that drinking is one of my skills. I have trained and practiced since I was a child and am very good at it, now. :lol:

Thatchers Somerset cider

The quiz begins and we start to do abysmally. Which makes a change as we tend to win. A round or three in and the headache I had been nursing for a couple of days started getting worse. Aided by my sinuses playing up, making me want to pull all my teeth out.

One of my friends nips out to their car to fetch me some antihistamines, hoping that they might help the sinus issue, as we’re all blaming the hot weather and associated humidity.

Whilst he’s out getting the tabs (all of about 45 seconds) I began to feel worse and worse. I had, by this time, finished that first pint and had had a couple of slugs out the second one that was now in front of me .

My husband was still stood at the bar, getting the rest of the round in and when he came back I told him that I needed to go home.

I was very very sweaty – clothes wet sweaty – yet vacillating between very hot and quite cold and clammy. I felt nauseous and my chest was beginning to hurt.

Puky

I recognised the start of an MS “hug”. We left the pub (before closing time – unheard of!) – and I proceeded to walk home with the help of my walking frame. I thought I would be ok, but as I took those first few steps, I realised that the walking frame alone was not enough help to get me home.

My ever patient husband comes with me. My internal temperature felt like molten lava and my head was pounding. The back of my skull, towards my neck. Throbbing. My legs got like jelly and I felt I could go no further than the 10 steps or so we had already taken.

I sat down on the seat of my walker and hubby pushed me home. Half way there I couldn’t hold in the nausea any longer and we had to stop so I could throw up in a hedge. Unfortunately, I could hear people on the other side of the hedge. They’re in their garden and I felt that I just couldn’t puke in their hedge while I might be heard and/or seen doing so. However, it was going to happen and I threw a couple of gobfulls in their vague direction.

We are now about 20 yards from the church gates (if not closer) and the front door is totally “nearly there yet”. I get out of the walking frame and push it myself, obviously walking in order to do so. The church yard being cobbles then grass… I figured I should think of my man and not make him try to push me any further. I really struggled to put one foot in front of the other but thankfully the door was, by then, just a hop, skip and a jump away. Still, some ten minutes later, we got to the door and I am helped straight to bed.

I peeled off my summer dress and collapsed onto the bed. My head was still pounding, in fact, it was getting worse. The pain in the back of my skull was spreading down my neck, as if there was a specific vein to just carry pain. It was beginning to make my left arm feel a bit weird. Very heavy and sluggish and not particularly happy to do what my brain is asking it to.

Arm

It felt like it was withered and was half the size of my right arm.

The pain in my chest had now reached all around my rib cage and this confirmed to me that it was an MS hug as I had suspected. This one was the worst one I had ever had though. My back, my sides and my chest – somewhere under my tits – were all doing their best to hurt enough to make me cry and scare my husband silly.

Once we had gleaned that I was not having a heart attack (chest pain, weird left arm) because I was not having any trouble breathing or speaking, we tried to decide what to do. I basically had no idea as I really couldn’t think straight. The spouse was saying to call 999 but I really didn’t want to, as our nearest emergency department is about an hour away from home. If I were to call 999 I would have to report my symptoms and they would have sent an ambulance and had me in for days no doubt.

I am the driver in this house. Hubby hasn’t passed his test. If he were to come along in an ambulance, he would not be able to get home again, nor come and get me when I was let home.

And I have a festival to go to on Saturday. I bought the tickets in February so there is no way I am missing out on it. Again, I am the driver and I have also bought tickets for my daughter and her boyfriend (who live an hour away in the opposite direction of the emergency department).  Today I have to drive and get them from the nearest bus station and then drive all four of us, tomorrow, to the festival and home again at about 0130hrs on Sunday morning.

So, last night I was far from keen to go to hospital. I knew that there would be no neurologist available that night, in fact, it would probably be a couple of three days before I would see anyone from neurology, if not longer. I was adamant that I was not going to hozzy just to lie in a bed for days, only to be told there is nothing they can do. I know this. All MSers know this.

Also, I don’t want to take up a precious NHS bed for something that cannot be resolved. There are other people that need the care more than I. Other people that can be fixed.

From my bed, crying and hurting, I sent my poor husband back to the pub, to finish the quiz. I had a joint rolled and waiting for me, as I tend to do before going out on the lash. I could not even get it together enough to smoke that. Even though I knew that it would ease the cramping of my intercostal muscles in the magical way that only a blast of cannabis can.

Brain fug (Yes, Fug)

I lay there and tried to switch myself off, so I might maybe get some sleep. If I could sleep, maybe I could cease to feel the pain and nausea. I did manage a few bursts of shut-eye, which was nice, but was either woken by the pain or went straight back to feeling it every time I woke.

The “hug” was becoming long standing and possibly worse with every minute. That’s how it felt at the time any way. When hubs gets home (early, God love him) I sit up on the bed, with him and try again to smoke that spliff. Truth be told, I wasn’t happy to smoke on my own in the house, what with the way I was feeling. It didn’t seem safe, or the most sensible thing to do.

The minute he got into bed, he fell asleep and commenced snoring. Usually, in these circumstances, I go out and sleep on the sofa. Or work from the sofa, more accurately. But having woken up at 0300hrs that morning and had no kip at all, I was determined that it not be me that had to move.

With a shove from me, he went out to the sofa and left me to try and sleep in the bed. He has told me this morning that he did not get any sleep but instead did what I tend to do and did some work. I get him to return to the actual bed at about 0600hrs and I got up and went out to the other room to put the coffee on and whatnot.

That takes me to now. My “hug” has gone but my head still hurts and my left arm is still peculiarly fucked up.

I still am unsure of what to do, so I’ll probably do nothing. If I call my MS nurse, she may advise me to go to hospital. And as I have said… I have a festival to go to!

Generic concert photo

Priorities, people!!

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Hello darkness, my old friend.

It is, once more, 0400hrs. Well, precisely, this very minute is 0407hrs, but you get my drift.

Drifting is not my old friend. If s/he were then maybe I could hitch a ride into sleep. I have had a couple of good night’s kip, mind. But alcohol, much alcohol, has been involved. I am told that doesn’t count.

Drinkies

Spring has allegedly sprung and although the sun keeps making promising appearances, the temperature is still struggling to reach double figures. The magnolia starting to bloom is a good sign.

I am struggling to reach normality. I am pushing on through. Not for a minute am I going to admit defeat. Not in public, anyhoo. Well, not face to face, at least. :lol:

You see, I am so very, very tired. Not just sleepy tired, get to bed then tired, or have a rest tired.
It’s exhaustion.

It is pure and it is mine. It is a constant companion. It is an old friend.

Of course, it’s to be expected after I have actually done something, like grocery shopping, or having a shower. Everyday things that seriously dip into my spoon drawer. But I know and expect that. The choices I make have a direct impact. This bedding could go another week, the kitchen floor isn’t actually dangerous (as long as you don’t eat owt that may fall upon it, no matter how few seconds it was there).

Changing the duvet cover

No. Sometimes it just sabotages me. Not like a friendly “creeps up on” type assault, but a violent attack. With weapons, possibly. Definitely with sheep.

I guess this is from all the muscle spasms, all the time. Mostly so minute to be invisible, but they are ongoing, persistent and very tiring. My calves/fingers/eyelids/toes/arms/thighs/whatever will begin a ticking twitch in one little place. It can stay put or expand to fill the whole limb/body part. Sometimes (mostly) it comes with a cramp. That hurts. All the time.

No, really. All. The. Time.

Right now, I have cramp from just below my right buttock down to my ankle. Meh, at least it’s just one leg, tonight. :lol:

I really want, and need, to get back to the gym. I’m sure stretching my legs will help. It did before. And my belly has reappeared, too. Not that I have put on weight again, but the flabbiness of it all! The horror!

Flabby belly - not mine.  Mine is worse.

However, I am so goddamn tired. All the time. I know it’s not a waste of time going to the gym (and it is a waste of money having this underused membership) but I have to prioritise my available energy. To be honest, the gym isn’t even in the top half of that list.

Now, I know that my friend who works at the gym would say that if I went back it would also help me sleep at night. That would be nice, but what happens is the second I get in the door after a session at the gym, I am asleep for hours. In the day. Which means that night I’ll be awake. Again. Exhausted and awake.

What the fuck is all that about?

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Well, That’s A Bit Rash!

April is upon us and, if you read my previous blog entry, you will know I started Lamotrigine a couple of months ago.

Starting on 25mg a day, increasing slowly to 400mg a day.  I am up to 250mg a day.

Each time I up my dose (every week, on a Tuesday) it knocks me sideways for a few days.  Let’s say to Saturday or so.  Then I have to up my dose the following Tuesday and start all over again.

I appear to be very itchy (like I get on Tramadol, but I haven’t had any of that in a week or more) on this med.  Maybe it’s something else, but I can’t think of owt.

I should read up on the side effects again.  I kind of stopped reading them, before, when I came to the symptom of one side effect being a fatal rash.  Yup, I didn’t ever connect the words fatal and rash together, either!

Example of Lamotrigine Rash

So, I’m inspecting any itchy parts, or the faintest of spots on my torso and the like on a daily basis.  More than once a day, sometimes.  Not that I’m paranoid or owt.  :lol:

Oh, yeah, the Tramadol.  Remember I said I did not know if it was the Tramadol or the pain (enough to warrant taking Tramadol on top of all my other meds) that is stopping me from sleeping?

Well, I have gone a week or so, as I have said, without taking any Tramadol.  Guess what?  It’s 0411hrs and I have not slept at all.  Went to bed at the usual 0200hrs, watched a movie, listened to the radio, listened to the snoring… got up again.

Neither the snoring nor the cat’s purring (as previously referred to) are to blame for my insomnia.  Although I would happily kill either of the culprits, at times.  Those times mainly being if I am struggling to sleep and some people/cats are positively showing off their slumber skills.

Deciding that it’s far too risky to try and do any w*rk, you know, any proper writing, I really try to keep away from such things when I am having a night like this.  A very sleepy night.  A very smoky night.

All in all, best not do anything that commands brain power.  To be fair, I am struggling motor-skills wise as well, tonight.  For every ten characters I type, I have to go back and edit five.

This is supposed to represent my current typing issues.  Didn't work, really, did it?  But loook!  Keyboard cat!!

Not that I don’t care about this blog, I do.  But it’s not vital.  It neither tries nor succeeds to make money.  I mean, it is connected to my VixPix – Tits out for MS pages, and MS-UK would always be happy of a donation or three, but I have other things that I do in order to make money.  This blog is about trying to keep afloat in the cerebral fluid, for me.  It stops me from whinging on*, on Facebook or Twitter.

*No it doesn’t.

Anyhoo, I am here, awake, itching.  I am, as usual, going to stick through the side effects as much as I can.  I do not give up on any of my meds without medical instruction.  I am willing to give them all a good go.

And as I am smoking more, due to not taking Tramadol, I am suffering from a severe attack of the munchies which is not good for my waistline.

Talking of which, I reset that Target weight that I hit.  I was struggling to keep it that high! :-o  So I changed it to ½ a stone (7lbs) lighter.  I got there within a couple of weeks and am now 9st.  I’d be happy with gaining 3lbs or so, on and off, but I’d rather not drop 3lbs below that.  You try to stay within 3lbs either side of your Target, with Slimming World.  I think I can do that, now.  I am choosing better food for munchie attacks, for starters.  That’s an important one, for me!

*     *     *     *     *

We’re in the middle of two weeks of it just being my husband and I at home.  The eldest having moved out and the youngest away for the college Easter holidays.  But this Friday there’s a house party.
The following morning (yes – actual morning) I’m off on a hen-do.  I’ll be gone till Sunday.

Hen-Night-in-progress

I am slightly worried about my spoon levels over the weekend.  I know I’ll be up most of the night, on Friday, as a houseful of party-goers is never that conducive to sleep, and I don’t need an excuse to be kept awake at the moment!

Thankfully, I have a minibus ride on Saturday morning to maybe fall asleep on.  I know that won’t happen though. (I get too excited about being let out of my cage.)  And we’d best not go into the details of the last hen-do I went to: my drunken wandering off in a city I didn’t know all on my own, away from the party of women, with my walking frame (thankfully); getting totally lost; getting a taxi driver to… oh, I’m not going into that, am I?  :lol:

Looking forward to both events, though… I do like a bit of a do.

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New Year, New Drug, New Resource, New Body.

It’s just gone 0900hrs and I have been awake all night.  Again.

Proper awake, too.  We went to bed just before 0200hrs (which is fairly normal for us) and I sat up, in bed, using my laptop, whilst my husband saw to a couple of emails.  He came to bed about a half hour later.  I wasn’t that sleepy, so I continued mithering Facebook and Twitter for a wee while.

He soon fell asleep and Peter (the cat) settled down to pummel at my legs and purr, loudly.     Well, you know, husband and cat seem to set each other off.  I don’t know if human snoring sounds like parental cat purring, but it makes Pete purr all the louder.  What I don’t understand, though, is when the purring appears to set off the snoring.

That’s just weird.  And annoying.

insomniaSo, I return to the living room sofa and consider my options.

For starters, I’ll take another couple of Tramadol.  That’s a strong pain killer that has the reported side effect of drowsiness (amongst others).  Drowsiness would be good right now.

However – and there’s always a however, right? – I have found quite the opposite happens to me when I take Tramadol.  Now, whether it’s the pain keeping me awake, because I only take this medicine when I have exhausted all my other means of pain relief, or the pills themselves.  I am thinking it’s the latter, as the drug is very effective pain relief, for me.  But I have to report that every time I hit up the Trams, I suffer with insomnia.

The next step in my quest for sleep is to self medicate, again.  I have already had three glasses of wine and one spliff, earlier in the evening.  I don’t want another drink, as I have already had too many Syns* but another smoke might ease me into a snooze.  It often does.  After my usual twice daily rounds of prescription medicine, my drug of choice is cannabis.  It eases my pain and muscle spasms and thus aides sleep.

It is often accompanied by alcohol, which has been my staple recreational drug since I can ever remember.  In fact, I cannot recall a time in my life when alcohol was not present.  This is not unusual for working class people, in the UK.  It’s ingrained in our collective British psyche.  We are a nation of piss-heads.

Yet still, tonight, I do not sleep.  I am very, very tired.

Insomniac

Four o’clock and five roll on by and I hear the milkman rattle his bottles and ply his trade.  It’s February and the sun will not be rising for another few hours.  The birds have not yet woken and it’s blissfully silent (bar the snoring I can still hear, Pete having pushed the door between the bedroom and the living room open again).

I feel nauseous.  This could be sheer exhaustion or it could be the new medicine I have finally been prescribed.  If you recall, at my last neurologist appointment, I was advised to wean myself off of one of my drugs with the aim of regaining my orgasm.  Then I was to be given an alternative to try (alternative drug, not orgasm, natch.  But that is an interesting concept, isn’t it?  What could ones options be?  If only there were a menu one could successfully choose from!)

I have been prescribed Lamotrigine.  Like many other drugs I have tried, it is mainly prescribed for epilepsy.  This one is also used for bi-polar disorders and the like, as well as for neuropathic pain.  I am starting on 25mg once a day, for the first week, then, for the next week, twice a day, then up to a total of 75mg a day for a week, and so on – slowly increasing to 400mg a day.

I have to, as usual, weigh up the pros and cons.  If this one reduces my pain but does so without removing all my muscle spasms then I’ll be a happy bunny.  I’ll also be highly surprised, mind.  We’re back to “reduced pain or satisfying sex-life” again, if not.

Thankfully, I have a great support network.  Not only is there the long suffering, ever patient, total hero of mine that is Pete’s purring buddy, but I have a whole swathe of Twitter buddies (hello, fellow Spoonies) and Facebook friends and, of course, there’s the charity that I have been fund-raising for, via VixPix.org for the best part of a decade.  That’s the Multiple Sclerosis Resource Centre (MSRC).

MS-UK

The MSRC have, very recently, rebranded themselves as the far more approachable sounding MS-UK.
MS-UK are simply the dogs’, (that’s a good thing, by the way :lol:).  They helped me through those fractious months after diagnosis and have been there for me ever since.
With a very comprehensive website that contains everything you might need to know about this sucky disease including a forum that provides support as well as an off topic community, and a chat-room for those instant fix moments we can all need from time to time.
They provide telephone support and advice and the whole team always appear helpful and cheerful and knowledgeable.

If you have MS, or know someone that does, or if you’re just looking to find out more about this unpredictable, incurable disease, then you really should take a look.  Pass on the url, too, if you can.  “Sharing” this blog would be an easy way to spread the word about MS-UK and I am sure they would really appreciate it, almost as much as I appreciate their very existence.

http://www.ms-uk.org/

✿    ✿    ✿    ✿    ✿    ✿

*Syns : One of the terms used by Slimming World, the diet club I have been using to lose weight.  I am happy to report that I achieved my target weight of 9½ stone (133lbs or 60kg) in October and by continuing to go to group meetings, I am managing to stay there!
I have become quite the Slimming World bore, I am sure, but it has been do-able and, if you’ve ever been on a diet before, you’ll know that that is a major plus.  That and not being hungry.  In fact, feeling full.  Proper full-up-full.  Yummy, family friendly, satisfying eating and lose weight?  Hell yeah!!

And like with the MS, the support is all important and it’s there when you need it: at meetings; on social networks; on the phone; whatever you need.  I have met a great bunch of people, too.  People I now consider friends, not just acquaintances.   I wish there were a graph to show that, but instead, here’s a graph of my weight loss.  Yeah, I’m showing off.  Bite me.

Vix' Slimming World Weight Loss Graph

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Not now, MS, not now!

It’s nearly 1400hrs and I am still in bed.

I had a bad sleep night (up and about, reading, working, etc) Got back in bed at 0500hrs.  Last time I looked it was 0520hrs.

Still, slept till about 1300hrs, today, so that’s quite a good stretch.  Hopefully that’ll see me through choir practice tonight.  However, I should make some dinner, ready for when I’m done, at 2000hrs, as I won’t be wanting to cook, then.

Curry I expect.

However, that needs me to be in the kitchen, not in the bed, right?  *sigh*

Cooking in Bed!

I’ll get around to getting out of bed as soon as I feel I can trust my legs.  (We’ll be eating when hell freezes over, then.)  :lol:

I am kinda glad this is happening now, as I will be mightily pissed off if the party season gets fcuked over by it.

This is the first time in years I am not feeling intimidated by the prospect of everyone taking photos*!  I’ll have to try to break the habit of trying to hide behind a crowd – not being overweight any longer.  Hopefully for good, this time.

Anyhoo… I have had a bad sleep week, truth be told.

Last time I went to the neurologist, we discussed, as we always do, my anorgasmia issues.  He suggested I change one of my meds and I duly agreed.  He reminds me to take my time coming off he one he wants me to come off, before starting the new one.

He has to write to my GP and advise him, and the GP can then prescribe the new pills.  It all takes an inordinate amount of time, but it’s the NHS and I understand how it works and without it half of us would not be here, right?

So, a week or so after the neurologist appointment, I begin to lessen the amount of the “old” medicine, taking two weeks to totally come off it.

I am into my second week of being without it and my orgasm is beginning to slowly and sporadically twitch back to life, like Frankenstein’s Monster after it’s first exposure to electricity.  It’ll never be the creature it once was, but at least it has some semblance of life.

It's Alive!

However (and there had to be a however, right?) that particular muscle spasm is not alone.  The others (that have never really left me) are back with a vengeance and my pain has increased (I think this is what is keeping me from sleeping) along with accompanying spasticity, instability and now with added falling!

WooHoo!!

Needless to say, I have not heard from my GP about the replacement medicine, at all.  If I just book to see a doc (as I’ll not get to see my guy without a couple of months notice) there’ll be no record of my even seeing a neurologist.  If I manage to contact my guy, I’ll get a telephone consultation (and that’s fine) but he’ll not have seen any such letter from my neuro, if the neuro has even written one, yet.

I know from experience that I just have to wait until the cogs latch into place and the machine starts working for me.  What I appear to have forgotten was quite how long this can take, and I perhaps should not have weaned myself off the old med so soon.  I guess I figured a month would be time enough.

Silly cow.

All this, of course, may not be the result of coming off those particular pills, but may just be an MS thing.  In which case, well, I don’t rightly know.  :D

Silly Cow.

*I appreciate that my saying I am intimidated by people taking snaps may sound a bit silly, but there’s a difference between staged glamour photographs and social snaps.  I have control over the former and none over the latter.

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Making The Change

This year, my life has changed. Or, I suppose I should say, I have changed my life.

For starters, back in May, I found myself unable to look at the reflection of my naked body. Not through any lack of reflective apparatus, or loss of vision or owt, just I had managed to eat so much as to make myself seriously overweight and visibly abhorrent to me.

I am 5’2″ tall. I weighed 11st 4.5lbs (158.5 lbs). My BMI was at 29.2. That’s not good. To be honest, it wasn’t just the mirror I couldn’t look at. I wasn’t too keen on looking down at my body and you just can’t help that, sometimes, can you?

I also was fully aware that I was just not moving enough. I sit at my computer, on my Bambach saddle seat and don’t have to move at all. Look, here’s a video I did, to show someone just how cosy I have things, as my daily set-up.

There’s my computer and my coffee machine, all within arms reach, then I can swivel round to the cooker and the sink… boom. It’s all there. I just have to move if I want to get to the fridge. And, even if I got up off my wheelie seat, the fridge is less than ten steps away.

So, what to do about this? Diet and exercise, obvs. *sigh*

I have done Weight Watchers a few times over the last decade. It works for me, in that I do lose weight, when I do it. I have always done Weight Watchers Online, though. I never wanted to go to a Fat Fighters meeting. Screw that.

Then again, I supposed to myself, it also doesn’t work for me because I have had to do it several times. My weight yo-yos and my Weight Watchers graph looks like a mountain range or a saw blade, stretched over time. Of course, the downs take longer than the ups. It seems to take a month to lose a couple if pounds but I can put so much more weight on in a fraction of that time.

I should try something else. (I did do The Atkins Diet, a couple of years ago. I missed my carbs and I felt like I smelled of meat. That was after one week). So… what to try?

I noticed quite a few of my on-line friends used Slimming World. I looked into it, as best you can without joining up, and bit the bullet and phoned the local representative.

My main worry was having to go to the meetings. I vocalised my worries about Fat Fighters. She assured me that it was not like Fat Fighters at all. But then, she would, wouldn’t she?

Aah, just do it, I thought. But then, I didn’t go. I spoke to a friend, at the pub, about this. To my surprise, she said that she wouldn’t mind going along as she was also unhappy with her weight. And an agreement was made and we duly took ourselves to the Glastonbury social club that hosts the Slimming World group.

You get an introductory instructional talk and get weighed. No one bar you and the person weighing you gets to know your weight. The following hour or so is the meeting, or Group as they call it. The Leader will talk through everyone’s gains (boo) or losses (yay). Then there is discussion about what you did that could have caused that change. There’s much moral support and things like stickers and certificates for reaching certain milestones, like every half stone (7lbs) lost or when you have lost 10% of your starting weight.

I sniggered at the thought of these childish “awards”. Like that would be of any interest to me. *tsk* As if.

Anyhoo, my friend and I decided we’d sign up and we came away with a folder with some books inside. And we went back. We weighed and left, the following week. We decided the Fat Fighters group meeting was not for us. But we’ve both stuck to the (very easy) plan and we’re both losing weight.  I have managed to recruit another friend too. I got a free week, for that. Excellent.

What is the diet? Well, it’s not far off how I was cooking before. The main difference being to just cut out the fats. I used so much olive oil that I am no longer using. You use a light oil spray instead. You can have as much pasta or potatoes or lean meat as you like. You restrict the amount of cheese and milk you use, if you want to drop the lbs. I mean, I know this makes sense, right? It’s pretty straightforward.

And you know what, when I’d lost my first 7lbs, after 5 weeks, I WANTED MY DAMN STICKER!!!

My Fat Fighters Stickers, so far.

And now, 18 weeks down the line I’m a couple of pounds off of getting my third one of those. I am ever so proud of myself and my body, at the moment. It’s a good feeling. (I am, at last weigh-in, 9st 13lbs or 139lbs)

Then there’s my activity levels. Or more, my lack of activity. I tried doing a daily walk, with my walking frame, sound the village. Not as easy as it sounds, when you live in farming country. The village does not have much in the way of pavements and the roads are littered with leaves, straw, hay, animal shit… usual country stuff. Not very disabled friendly. Especially if you have walking issues on clean, dry, even surfaces.

I’ll join a gym. There’s a thing your GP can do called something like a Prescription for Exercise or similar. It get’s you a 25% discount off your local council gym. You get an interview with someone at the gym and they develop an exercise plan with you, that suits your needs and takes any illness or disability into account.

You have to sign in and out to prove to the Government body responsible for the scheme that you have used their 25% of the membership as they’d prefer (I have no idea why you have to log in and out, but it’s a separate book, just for GP referral cases, like me).

But it is a full membership and I could, if I wanted, use the pool, or join the Zumba class, or the yoga, or whatever else they have on.

So, I have been going and doing the programme that the woman and I planned.   I have been very good and I go at least every other day.

A Gym.

I do get very exhausted, though.  Fatigued, I suppose, because it’s not just being out of puff from exercising, I have to sleep.  Recharge.  Kind of like when you have eaten your Christmas dinner and have a carb overload and need to take time out for your body to deal with it.

It’s so bad that I cannot make it to choir practise, if I go to the gym on the same day as choir (Thursdays).

Oh, yeah, I have joined the church choir!  Suddenly, half the village that were only aware of me for one thing (OK, maybe a pair of things) now know of my existence as a whole, fully functioning human, not just that woman that gets her tits out.

I was asked (and accepted the offer) to help out at our village show.  I had been trying to get into helping out on that for the best part of the decade that we have lived here.  I always came up against brick walls, before though.   They’d say “Oh, yes, that’d be nice” but then I’d hear no more.

I took a session on the cakes and teas stall in the village hall, during this year’s show.  I loved it!

All those people that had been so sniffy with me before, that had refused to even make eye contact with me were suddenly aware of me as someone that could join and give back to the village I love and think of as my home.

It’s all so nice.  So different.  And I am looking good.  Even if I don’t often feel good.

Me, singing at church choir.

I wrote something on FaceBook, today.  As soon as I had posted it, I thought that maybe it should have gone on here, instead, as it might be a bit random for FaceBook.

Today I feel extra weird. Kinda like I am “off phase”. Hmm. Sort of drunk, vertigo-y feeling. Electrical. Buzzy, but not in a good way.

I know it’s just MS bull$hit, but I never know what to blame this feeling on.

Everything happens a tiny fraction of a second before (or is it after?) it actually happens.

See? Off phase. Like my own dimension is breaking through, but I’m not quite in it.

OK, y’all have glazed over already, haven’t you? But some of you surely will know what I mean?

Won’t you? Don’t you?

I’d hit up the Tramadol (or something) but I have driving to do tonight.

Perhaps I should go have a nap.

I’ve had a couple of comments, a couple of people saying that it sounds like how they feel before a seizure.  Yeah, I understand that.  It’s all neurological mis-wiring and mis-firing, isn’t it.

I suppose I should go and have that lie down.  I’ll take this machine and add the video I spoke of and some other pictures, whilst I am there.  I may fall asleep while I am doing it, though.

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Summer 2012

It’s August.  It’s “summer” so we’re told.  It’s been an on and off one, weather wise, but, to be fair, this is England and that’s normal.

Last year I reported on my eldest child leaving home to go to Scotland, and now I have to report that he is no longer there, but living with his father, a couple of hours away from here.

My youngest is still living here, but, like me at her age, spends a lot of her time at the home of her boyfriend or stopping at mates houses, that kind of thing.  She is currently in Bristol for a week with her chap, as his parents are away.

You may be aware of her, she has recently put up some lovely pictures on this very site.  Bless her.  I am so proud of her for doing this.  Having done (and occasionally still doing) similar work, I know it’s pitfalls and what-have-you, so I am there for her should the going get tough.  Some people have very strange ideas when it comes to displaying your flesh and what that might say about you.

Photo of Sarah Louise from VixPix.org

Just let them dare say anything nasty about my daughter.  They wouldn’t like me when I’m angry.

:lol:

So, where am I at the moment?  Health wise, that is.  I mean, I’m sat on the sofa, natch.  Once I get my seat free, that is.

Mobility is a bit restricted, at the moment.  I have been on and off, like the weather, for a few months now.  My legs are tired.  So very tired.  Walking is a bind.  I am doing it but I  am suffering.  I do my best not to show it, obvs, because that is boring.  I am really trying not to let it be a public battle.  I have that sneaking feeling that I am failing at that, and it might be a losing battle, quite soon, anyways.

I know I have felt like this before, like I am at the brink of a physical collapse.  Like this time tomorrow the legs just plain won’t work, and I have been wrong.  So let’s cross everything that I am wrong again.

But, you know what, I have had a couple of times, of late, where I am already there.  I have been blaming various things for my legs not doing as they are told:  They’ve gone to sleep as I am sat for too long; the cat is sat on the bottom of my flared jeans or my dress; I have smoked too much dope… all those kind of things.

Legs asleep?

Truth be told, each of those (and similar) times, I have gone to get up and my legs have just not moved.  I can get there… you have to concentrate really hard and take your time, but you get there in the end.  Now, these instances seem like they take an age for me, where as they actually, probably, only take a minute or so.

Of course, the concentration on making ones legs move is interrupted by the concentration on trying not to blub like a gurl at the same time.  Also, often, to think of something witty and erudite to say, to divert from the situation.  One has to try, at the very least.

There have been so many times, this year, when I wanted to just get home and get on my computer and report something.  But I have had too much work to do, to allow me the time to be so selfish.

Now, I like to have work to do.  I had been so very, very bored.  Then my husband got a contract to do some serious work and this made it so as he did not have time to write the filth we produce, to pay our bills.  I took on that role and I am enjoying it, but it has made it so as I do not really have time to write here.  I bet you are all quite glad of that, really.  :lol:

Well, tough!  Trying to recall, now, the things I wanted so very desperately to come on here and whinge about, I am having trouble remembering.  Go figure.  But I’ll do my best.

A month or so ago, we went to see The Wurzels.  It was a sunny day and the gig was in the afternoon and there were a coupe of hundred people, maybe.  I parked myself (and my rollator) right up front and settled in with a pint of cider and a ciggy.

The Wurzels

There were people dancing to the music playing before the band came on.  They were intoxicated in some form or another and really enjoying themselves.  One chap, about my age, possibly older, was doing his drunken best to get other people up to dance.

He came over to me, took the brakes off my rollator and just wheeled me away and around the floor.  It was innocent and friendly and he meant, and I took, no offence.  However…

How very dare he!!  Really – that is not acceptable, people!  It’s not a wheelchair, but he thought it was.  I imagine he thought he was giving me the dance I cannot have.  Then he wheeled me back and left me alone.  I knew the problem would come when I had the need to get up and dance all by myself.  Other people would then see me as a fraud.  They would wonder why I was sat in what is seen by most as a wheelchair when I can obviously get up and walk, let alone dance!

Oh, I’m sorry, we have been here before.  It is such a worry, though.

What else?  Oh, I have a brain fug at the moment.  You ever feel like you have pins and needles inside your head?  It sort of feels like it’s around my brain.  Kind of under my scalp and skull.  Just on the left, though.  It’s weird.

I spoke to my GP, t’other day.  I asked him what I should report, symptom wise.  I used MS Hug as an example.  he said “MS Hug? <laughs> That’s a new one on me!”

He told me not to bother reporting anything that is obviously MS related (as there is nothing that can be done), but if I get unexplained chest pain, I should do what everyone should do and go to A&E.

*Sigh*  I should have used a different example, it’s just I was struggling with a hug at the time, so it was to the front of my fuggy mind.

A&E

Nothing, yet everything, is “obvoiusly MS related”.  This is the reason I never take out insurance on financial products.  They would always manage to make it fall back to my MS, an existing condition, so therefore nulling any claim (I know this, I worked in fnance most of my adult life).

You got run over in the street?  Well, you were not moving quickly enough, because you have MS.  An existing condition.

Maybe I am being a little harsh there, *about the insurance industry.

*I am not.

So… I am thinking that I might should go to a gym.  Yeah, stop laughing.  I mean it.  I need to increase my upper body strength.  If I am going to have to rely on my arms to move myself around, I need to tough-up.

I have never had much upper body strength.  Remember the monkey bars when you were a kid?  Yeah well, I could just hang there.  There was never going to be any movement along the stupid horizontal ladder.  I mean… why?  WHY?

Having lost a little of what strength I did have (I think) I am now thinking that I should maybe prepare myself for wheelchair use.  Oh, I know I use one very occasionally, now, but I detest being pushed, in the same way as I detest having Silver Service at a restaurant.  I don’t take well to having servants.  Having said that, I am pretty much unable to wheel myself unless I am on a nice, flat, low-friction surface.  So, get fit or get pushed.

I guess I could walk on my hands?Where do I go, gym wise, though?  I mean, I am not standard, am I?  They’re gonna see a middle aged woman coming in the door and think “bums and tums”.  But I need something else and I need someone/somewhere that understands MS fatigue, for example.

My MS physio is in a hospital that is an hour away and I do not have a problem, as such, so I doubt I could get to see him, even if I were prepared to make that trip at least once a week.

There is no MS Therapy Centre near me.  I am looking at over an hour to access anything like that.  I would need some time to recover after the journey.  I would need many spoons!!

I am fast running out of energy, right now, as it goes.

I am sure this is a relief to all reading!!  Also, my various electronic devices are bleeping at me that I have work to do… emails coming in, reminders of things I should have done already.

And there’s dinner to be made.  We’re having sausages.

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A Time To Dance

I have spoken before about the fears I have, as a disabled person, claiming benefits and then having the audacity to enjoy myself, or, heaven forbid, actually dance but that is not what I am going to be talking about today.

 There are many excellent blogs commenting on this government’s hideous line of action when it comes to benefits and welfare and I feel somewhat humbled, reading them.  I know I am political and I know I can write but you can do far better than reading my thoughts on the hideous, almost eugenic, work that the current UK political regime is implementing.  You could start by reading Where’s the Benefit and Diary of a Benefit Scrounger.  Both excellent blogs that are far more worthy of your attention than this shite I write.  :lol:

So, that’s what I’m not talking about.  What I am talking about is something far more frivolous:  Singing and dancing.

I have always been one of those people that has to sing along to the radio.  Or the band.  Or the CD, or whatever.  I like a sing, me.

I used to sing at my (Catholic) junior & infant school.  In the school and church choirs.  Then, a little older, in the church with my best friend, as we led the music with our guitars and voices, until the nuns told me my dress sense was not appreciated and I should wear something more appropriate than Black Sabbath tee-shirts.

I tried to argue that if God wanted me to be at church, surely He would want me there as “me” and not someone pretending to be something I was not.  They not only had obviously never heard any Black Sabbath music (which is quite pro-Christian, as it goes) but they failed to hear any of my arguments.

I left the church.

I sometimes think I miss the church, but when I think a little more, I realise I do not miss the church.  I do not miss the judgemental, guilt laden, narrow-minded people that associate themselves with organised religion.  I miss the singing.

So, I have joined my village’s church choir.  It is not a Catholic church.  It is Anglican.  I do not know that many of their hymns.  Sometimes I know the words but the tune is all wrong.  Sometimes it is the other way around.  Thankfully, I can read music and cobble my way along with my now diminished soprano warble.  They don’t seem to mind that I am there.  Mind you, I no longer even own a Black Sabbath tee-shirt.

They possibly do not know that I am no longer a Christian and seem to have not noticed that I will not say the prayers (I think it would be disrespectful and downright lies, if I did).

But here I am, thinking about getting shit-faced tonight, instead of on Saturday night (as I had planned) when we have a party to go to.  Why not both nights?  Because I have to get up on Sunday morning and go to church at 0915hrs, to get kitted out in a robe, ready to sing in choir.

Thank fuck I live in the church-yard.

My Church.  My house is the building to the left, in this picture.

So, this party on Saturday night.  The landlord and landlady of our local have been at the pub for 25 years, and that is the reason for the celebration.  There is to be food and a band and all the usual stuff for that sort of thing.

Pretty much like the party I went to, last weekend, really.  It was a friend of mine’s 70th birthday.  There was food and a band and all the usual stuff.

I sat and watched while the very young children skidded about on the dance-floor before the band started, but there were records playing and lights flashing and it was just like all the community centre parties you have ever been to.

The band begin – a covers band, of course, playing music from 30, 40, 50 years ago.  The women begin to dance.  Before them, a solitary girl, about ten years old, maybe younger, is just having to move.  She is doing her own thing and trying to avoid the skidding boys and the babies.  She just has to dance.

My eyes start to sting.  Bollocks, you can’t even blame the smoke for that, since all us smokers are now exiled to hang out the door on such a rainy night.

I was that child, you see.  I had to dance.  the minute the music started, I would be there.  Unashamed and unabashed and uncaring as I flailed myself around a dance floor, all on my own.  In a world of my own, letting the music, any music, take me where it seemed to need to do so.

I remember being in what seemed like a very grand property, with my family, when I was about 5 or 6.  We were in a hall.  There was music playing.  It was a waltz.  I remember the music, because one of my elders came up to me, on the dance floor and took hold of me and said “this is how you are supposed to dance to this music” and whirled me around for a few bars, then let go and went to sit down.

Again, all alone on the floor, I realised I could not do that stupid, so-called dancing that I had just been instructed in, on my own.  Silly person.  Who cares what you think I am supposed to do, I am doing what the music is telling me to do.

I am sure I looked quite ridiculous.  But I remember it so vividly.  I did not care.  I was free.

Child Dancing

It all came flooding back, as I watched the small girl discovering that if she twitled around at just the right speed, the hem of her skirt began to rise and she looked, in her mind I am sure, like a floating faerie.  I remember that.   Before I knew about physics and cause and effect… I remember like it was yesterday.

And I remember being a shockingly fit and good looking young woman going to nightclubs on my own (yes, with the intention of pulling – or just plain to get laid) and going to dance.  Going to dance before anyone else was on the dance floor.  On my own.

Still unashamed and unabashed, letting the music take me.  Feeling the bass in my solar plexus and feeling it pull me around like a puppet.  I had no choice.  I was it’s slave.  There was nothing I could do about it.

So, last Saturday night, as I sat and watched my former self, in varying states of age, moving on the floor, letting the music take them and being free, I knew I would have to dance.

Here’s the rub:  These days, I get one dance.  Sometimes, not even a full song’s worth.  But I can do one,  Then my legs tell me to fuck off and remember who I am now.

I explain to my (poor, long suffering) husband about what is going on in my head, at that time.  I am allowed one dance, if I am lucky.  I want it to be a good one.  I want it to be to a track that I know very well and that I can sing along to as well as let the beat and the tune take me where it will.

This is a good song, but there may be a better one in a minute.  If I don’t dance to this one, maybe there will not be a better one coming along.  Oh, the trials!!

I have been using my walking stick throughout the evening and I know that a lot of the people at this party will have no idea who I am, let alone know why I have a walking stick.  It’s a good job I didn’t take my walking-frame, like I do to my local, as then they’d think I was a complete fraud.

I get up and “dance” to a Bob Marley song, being covered quite well by the band.  I can move to this.  These days there is not quite the freedom that there used to be.  I know that if I let the puppet strings take me where they want to, someone will come along and cut those strings.  Savagely.  Without notice.

Fallen on the dancefloor

After my dance, I have to go and sit.  I have to go and sit NOW.  That’s fine, on this particular night, as no-one is sat with us and we have a table for four all to ourselves, right up by the stage.  This suits me fine, for when I have to collapse.  It suits me fine for watching the other people grooving and shaking and busting some moves.

It makes me very upset.

Music still has hold of me.  Generally speaking, I do not have music playing, these days.  I do BBC Radio 4.  Speech based radio.   Of late, I have tried again with music radio, tuning in to my local community radio station, Glastonbury FM (who are always glad of financial support, by the way).  I am doing my best to listen again to music.

I sing along all the time, of course.  Sometimes, the music takes me.  Sometimes the puppet strings are pulled tight and I move in my kitchen until I have to stop.  Sometimes I cannot.

But you know, when I can, I will.

When you see me in the pub, this weekend, and I have walked there with the aid of my rollator and then someone has given up their seat at the bar for me, and then I wobble over to where the band is playing and dance, please don’t think I am a fraudster.  I am mistily seeing my life being dragged away from me.  I am taking the opportunity to be free.

Maybe for the last time.

Play this.

Title is from here

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Spoon Theory

Recently, on Twitter, you may have seen many people describing themselves as Spoonies, or referring to Spoon Theory.  I believe that there may be many that are not familiar with Spoon Theory, and this needs to be rectified.
This was a term coined by Christine Miserandino who has Lupus.  But it could equally apply to those with MS, Fibromyalgia, ME, or any number of other disabilities and ailments.
It’s a long read, but it is worth it, to help you understand what it can be like for afflicted people to just manage how they live their lives.  If you are afflicted in some way, you may like to share this to help your friends and family understand what is going on, in your life.

The Spoon Theory

written by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

Cartoon image of Christine Miserandino holding a spoon

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

Cartoon image of Christine Miserandino holding a spoon

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

Cartoon image of Christine Miserandino holding a spoon

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

Cartoon image of Christine Miserandino holding a spoon

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

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Confessions Of A Thick Blonde

Today, I want to share with you something I wrote to go onto one of my businesses blogs, that my husband writes.  The blog in question in MyBoobSite and is generally concerned with, well, titty models.

I felt the need to write something after some of the readers were being rather nasty towards one of the models that they believed my husband was featuring too much, because, in their opinions, this woman just was not nice enough.  Not pretty enough.  Too fat… all sorts of negative crap.

I got a bit annoyed and felt the need to pen the following.  Now, I have not changed anything.  Not even any of the pictures or links, so exercise caution if pictures of boobs offend you.

At the end of this entry, I’ll add a link to the comments I received on this post, when I put it on MyBoobSite.  If you feel the need to say anything about what I’ve said, maybe you could reply on here, though.

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Hey there, guys. This is Vix. Reese’s wife. You may remember me from such pictures as these:

Vix with her tits out in the sun

Vix with her tits out in the sun

Or you may not because it has been a while since we did any photographs. Why is that? Well, there are many reasons, a lot of which have come up, in recent days, via the comments left by readers of this very site.

Would you indulge me by allowing me to express a female point of view on things? Well, I am going to, so if you don’t want to know, fine, just wait a wee while and Reese will be right here with some more boobie booty.

I was an unfortunate child: Stick thin, specs, asthma, the works. I studied physics and computer science. I was into heavy metal & prog. rock. I read horror & sci-fi. I was plain looking and had no breasts. Funny, articulate, intelligent, verbally astute to the point of precociousness – all these things too, but none of those were making me popular with anyone. Those things do not count when it comes to making friends and being “in” when you’re a girl at school.

You know what? They don’t do much for you when you’re a grown woman, either.

You learn at a fairly young age that what counts is how you look. Yes, still in this day and age, that is how it is.

You learn, as a girl, from about age twelve, that you’re not up to scratch, looks wise. Your peers will soon let you know that your hair is in need of a good seeing to and your face belongs behind a mask. Your family will humiliate you further by holding up your new bra, freshly measured for and bought, when you get home and the shopping is unpacked, by exclaiming, with more than a bucketful of sarcasm “And here’s Victoria’s massive support!” Cue the family falling about laughing, compounding the “walking ironing board” comments you get at school.

Your facial features are fair game for all to comment on. You take off your specs and get told you have piggy little eyes. You break the habit of a lifetime and smile a big, cheesy, genuinely happy grin and get told your chin looks like a cross between that of Bruce Forsyth and Kirk Douglas.

Bruce Forsyth Kirk Douglas

So, what do you do about this? Well, you can retreat into your shell and become one of those women that no-one ever notices or you can try to salvage what you can.

I learned to be attractive. I could paint and draw so I drew something pretty on the front of my head and stood tall (as tall as you can, when you’re 5’2″) and just exuded all the sexiness I could. Absurdly, my confidence was high and I balled it all up and walked, crotch first, through every door I came across.

The tits? They came much later. When I had my children, I breast fed them both until they were each a year old and my meagre 34B bra size increased to something I didn’t even know existed: an E cup.

The attention I was getting with my new boobs was amazing and I lapped it up. I was, however, quite devastated when I stopped lactating and my breasts fell, drained and tired, down my torso. Like two paper bags, empty all bar a plumb at the bottom. Sad, drooping and redundant. Of course, you probably know, that this is why I had an augmentation, to fill up the empty sacks that my breasts had now become. Why? Because I learned that when I had tits, I was noticed. People paid attention like had never happened before. And I liked it.

For the first time in my life, I got chance to share myself. To be listened to. To utilise the mental dexterity that had gone unnoticed throughout my years on the planet.

Because I had tits.

Bullshit, isn’t it?

But it’s for reasons like these that you do not get to see women that are not attractive, or God forbid, actually “ugly” on sites like this. These women have been conditioned, pretty much from birth, to think that they are not to be paid attention to. Not to be listened to. Not to be seen.

These women do not become singers, however brilliantly they may warble. The do not become actors, regardless of their prowess. They do not take their clothes off for magazines or websites.

Of course, there are exceptions. Susan Boyle, Kathy Bates, Lexxi Luxe. Yes, I said it… Lexxi Luxe.

Susan Boyle Voice of an angel, face of the DevilKathy Bates A rare commodity - a plain female actorLexxi Luxe pic from XX-Cel. A big, brave woman.

All brave women. All of them women who have bitten the bullet and decided “To hell with you all, I am going to do this because I am good at it and you will notice what I do and show me some respect as a viable human being!”

It’s hard to overcome all the feelings that got implanted in your head as a child because you had no boobs and therefore were not a real woman, or had big tits and were therefore a slut (Oh, we all knew one of those at school, right? What did she do to deserve that, except be masturbatory fantasy fodder for the boys and an object of jealousy for the girls?)

It’s hard to overcome the fact that they made you sing behind the curtain in school plays, while someone prettier and more socially acceptable looking, but who couldn’t sing for toffee, mimed along to your voice.

It’s hard to overcome your fears of going up for a job that you are born to do and have all the needed experience and qualifications, just to see someone thinner/more attractive/younger get the role.

We can’t all look like Sarah Nicola Randall. (She is so my cup of tea, btw)

Topless photo of Sarah Nicola Randall from PinupFiles.com

And that is kind of why I have not done any photographs, of late. I read what y’all say about models and I cringe. How can I ever think I deserve to do that job? My boobs are too small (36F), I am too plain, I am too old (I turn 42 on Sunday :) ), I am too disabled, I am only on MyBoobSite because I am Reese’s wife (here’s news for you, without me there would be no HardPourCorn at all!)

And I’m thick.

Now, to me, until quite recently, that word is an insult. It means stupid. It means unintelligent. Combine it with “blonde” and you get “bimbo”.

But, being on Twitter has taught me that it also means “not fat, not thin, but flesh where it should be” which kinda describes me, I suppose. Well it does more than BBW and I am obviously no skinny minnie.

I am not phishing here, I am in no way after any sympathy or ego-boosting. What I am trying to say is that these women, these people, that some of you are berating for having the gall to try and make a living by spreading a little sexy fun, deserve a bit more respect. They might not be your cup of tea, and to be honest, there are times when I see someone on Reese’s screen, when he is writing a BBW blog, that I have commented “Jeez, if I had a penis, it has just shrunk so far into my body that I have an innie!”, but, you know what – I know that I don’t like that stuff, so I don’t look at it.

Kali Kala Lina photo from PlumperPass - Just NOT my bag, baby.

Go look at BigBoobsOnCam, which I have been posting on for a while now and you will see that I try to pick different body types to share with you, but you will mainly see slim & stacked women. Because that is my preference. It is very hard to chose to share with others that which you do not feel passionately about yourself.

LuciousAss from IMLive - this is more like it, for me!

I guess I am trying to say that we are all different. Not only in what we look like ourselves but in what we like to look at. What floats our boat. What we need to see in order to cum. After all, that is why we’re all here, isn’t it? It’s not to achieve world peace or to cure HIV/AIDS. We’re here for personal gratification. That is all.

Reese and I do our best to help you achieve this and have a selection of different sites that cater to different preferences. The models that work in this business are hard working men, women and trans- people. PEOPLE. I think some of you forget that sometimes.

Ok, I’m done, but please remember that this is Vix writing and not Reese. These are my views and opinions and not his. Like I said at the top, he’ll be along with the big boobiness any minute. (And give him a break – he has to put up with me and my views all the time, which can’t be easy. :lol: )

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As promised, here’s the link to the comments made by MyBoobSite readers.

>>CLICK ME<<

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