Vix Pix Blog

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.

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.

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?

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.

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.

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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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:

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.

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.

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)

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.

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.

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. )

* * * * *

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

>>CLICK ME<<

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Just a quickie, really, as I would like to get comments on Duloxetine and it’s side effects.

I have only just started taking it but am feeling sick as a dog and have lost my appetite totally.  This is not like me.  I can usually eat for England, as evidenced by my girth.

Does this side effect wear off?  I kinda hope not, tbh. 

I have to up my dose in a couple of days, so am guessing that if it does wear off, it’ll come back on the increase.

I am hoping that the drug will help decrease the burning pains I get in my feet and hands.  This is, as you’ll know if you’re a regular reader, the latest in a long line of med changes I have done of recent times.

As yet, this has not occurred.  So I’m all up for the increase in dose.  I know that this is, essentially, an antidepressant medication and is akin to a non-tricyclic Amitriptyline.

There are, as usual, many side effects listed in the leaflet in the box.  And, as usual, most of them are things that I am suffering with and am taking the drug to remove.  But then, that’s what you get with all meds, right?

Of course, sexual disfunction is one of the listed side effects.  As is nausea and loss of appetite.

So… who has something, anything, to say about duloxetine?

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Good Times, Bad Times is now playing in my head.

I took my time and it turned out that I took too long, last month, after my appointment at the Pain Clinic, to report back what happened.

I took my time because I was absurdly upset and, just for a change, stupidly angry.  I think I took too long because I lost all that anger, and maybe I should have shared it on here, straight away.

The upshot of my appointment was that I was signed off from the Pain Clinic, as the doctor and I decided that it was as much use to me as a chocolate condom:  It seemed like a good idea, but did not meet any of my needs, in the end.  We discussed what I should do next and the conclusion the doctor came to was that I just had to weigh up the pro’s and con’s of using medication.

Did I want to no longer be in pain or did I want a satisfying sex life?

Yup.  Them’s the options.

I can’t begin to tell you how angry this made me.  I hope you can understand.

The pain medication I am allowed will cause sexual disfunction.  If I do not want sexual disfunction, I must suffer the pain.  No matter how I word this, it does not get any better.  My sex life is immaterial to the medical professionals and I am a fool for allowing it to be of any concern to me.

Here’s the rub… it is of concern to me.  It is a major part of my life.

Sex is of supreme importance to me.  I believe that, like all other organisms on the planet, we are here with simply one function to fulfil.  We must reproduce.  Now, thankfully, we have contraception so we can follow out animalistic needs without spawning new human beings, should we so wish.

Everything we do is with the hope of getting laid.  We might pretend it is not, but we are unable to deny it.  We want to get a job, so we can earn money, so we can get stuff to make ourselves more attractive to prospective sexual partners.

We buy clothes and choose how to dress so we can make ourselves more attractive to potential sexual partners.  Oh, you may say “I am wearing this because I like it and no other reason” but you are fibbing to yourself… it’s so you look good.  You want to look good so as to be more attractive to potential sexual partners.

Everything you do is ultimately to that goal.  Yes it is.  The car you buy, the sport you play or support, the cooking you do, the way you brush your hair… everything.

So, with this in mind, I find it vital to get laid at every given opportunity.    These days, every given opportunity is few and far between.

You kinda have to feel good in order to get down and dirty, don’t you?  It really helps if you’re not screaming with pain the minute you move your legs, for example.

So, you take pain killers to make the pain less.  To make it tolerable.  The joke is that the pain killers stop your sex-bits doing what they should.  There are other medications you could take to counteract the side effects of the pain meds, but you’re not allowed these.  This is because you do not have a penis, but I have rattled on enough about that, before.  My anger was directed at the fact that I had the “choice” spelled out to me:

Did I want to no longer be in pain or did I want a satisfying sex life?

This is an unanswerable question for me.  They might as well ask me if I want food or oxygen.

* * *

This month we are treated to a news story about a woman who was claiming Disabled Living Allowance whilst openly enjoying herself.  She has been sent to prison.  She said she could not walk without the help of crutches and yet she has been seen, on holiday, using a water-slide.  The audacity!!  How very dare she sit on her arse and fall down a slope when she is disabled?!?

She was also seen walking on uneven surfaces and strolling along a beach.  Whilst claiming benefits.  The bitch!!

On holiday, where you are relaxed and the temperatures are different and you do not have your usual cares and worries, you feel good, right?  We all feel good on holiday.  Yes, even me (unless we go to Florida in August, then I feel like shit because it’s so bloody hot and I really can’t take the heat).

I leave the house a couple of times a week.  I go and do my grocery shopping on a Monday and on a Friday night I go to the pub.  I drive to go shopping, I walk to the pub.  The pub is about 100 yards away.

Sometimes, I have to use my walking stick to do that walk.  Sometimes I have to use my walking frame to get there.  And sometimes, I can walk there unaided.

Sometimes, I am feeling good and I have been known to dance.  Sometimes, I have been feeling lucky and I have managed to coerce some poor stranger to come home, where I chuck him on his back and fuck his brains out.

The thing is, people only see me when I am feeling ok or good, or lucky.

If I am feeling not so good, nobody sees me.  I stay at home.  I am in pain, or asleep, or both.  My point being that people only see me out.  As far as any casual spectator can see, I am a normal, healthy, if somewhat tired, woman.

And I am claiming Disabled Living Allowance.

This is because I am disabled.  I cannot always be spontaneously dancing/pulling randoms/walking about.  But they only see me when I am.

They don’t see me when I am in my kitchen, doing all the things I have to do like washing dishes, ironing and cooking, all with the aid of a saddle seat on wheels, because I cannot stand long enough to iron so much as one garment.  The saddle seat cost me £400.  DLA enabled me to get it.  I have had it a year.  I cannot imagine life without it.

My nearest Tesco supermarket is eleven miles away.  I drive there in my Motability car.  Motability is a charity which enables disabled people to lease a car.  You can get it if you are on the higher level DLA for mobility reasons.  Motability get your benefit money, you get a car.  Without DLA I would not be able to have a car.  There is next to no public transport where I live.  Without my car I would be cut off from the world.

I truly fear, right now, of leaving the house.  If I’m feeling good, I really do not want to use walking aids.  If I can do without, I will.  This does not mean that tomorrow will be the same.

I fear that some busy body will think they are doing the right thing by reporting me as being able bodied, when I am claiming disabled benefit.

Am I to stay in my house and never venture out?  Am I to never go on holiday for fear of Facebook pictures of me, enjoying myself, being used as evidence that I am a benefit cheat?

Should I never take the chance to dance, ever again?

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I have just read something on FaceBook that has made me really angry.  And it compels me to rant a bit, on here.

I asked the person that posted it to tell me where he got it from.  He said it was in an email and could give me no further information.

Here is the whole thing:

When girls don’t put out!!
This was written by a guy…it’s pretty damn smart.

Girls — Please have a sense of humour!

I never quite figured out why the sexual urge of men and women differ so much. And I never have figured out the whole Venus and Mars thing. I have never figured out why men think with their head and women with their heart.

FOR EXAMPLE:

One evening last week, my girlfriend and I were getting into bed. Well, the passion starts to heat up, and she eventually says, ‘I don’t feel like it, I just want you to hold me.’

I said, ‘WHAT??!! What was that?!’

So she says the words that every boyfriend on the planet dreads to hear…

‘You’re just not in touch with my emotional needs as a woman enough for me to satisfy your physical needs as a man.’

She responded to my puzzled look by saying, ‘Can’t you just love me for who I am and not what I do for you in the bedroom?’

Realizing that nothing was going to happen that night, I went to sleep.

The very next day I opted to take the day off of work to spend time with her. We went out to a nice lunch and then went shopping at a big, big unnamed department store. I walked around with her while she tried on several different very expensive outfit s. She couldn’t decide which one to take, so I told her we’d just buy them all. She wanted new shoes to compliment her new clothes, so I said, ‘Lets get a pair for each outfit.’

We went on to the jewellery department where she picked out a pair of diamond earrings. Let me tell you… she was so excited. She must have thought I was one wave short of a shipwreck. I started to think she was testing me because she asked for a tennis bracelet when she doesn’t even know how to play tennis

I think I threw her for a loop when I said, ‘That’s fine, honey.’ She was almost nearing sexual satisfaction from all of the excitement. Smiling with excited anticipation, she finally said, ‘I think this is all
dear, let’s go to the cashier.’

I could hardly contain myself when I blurted out, ‘No honey, I don’t feel like it.’

Her face just went completely blank as her jaw dropped with a baffled, ‘WHAT?’

I then said, ‘Honey! I just want you to HOLD this stuff for a while. You’re just not in touch with my financial needs as a man enough for me to satisfy your shopping needs as a woman.’

And just when she had this look like she was going to kill me, I added, ‘Why can’t you just love me for who I am and not for the things I buy you?’

Apparently I’m not having sex tonight either….but at least that bitch knows I’m smarter than her.

Why has this made me so angry?  Do you really need to ask?

This takes sexism up a notch.  It stereotypes both women and men.

As a woman – no, as a person, I have to say I do not like to cuddle.  I could blame it on my MS and say I do not like to cuddle because I get so very hot and sweaty and my muscles are not under my control, so I tend to twitch and kick but, to be honest, I have never liked to cuddle.

I am not good with physical contact, unless it is leading to sex.  I like sex.  I particularly like coitus – I like fucking.  I’d take fucking over oral sex, for example, every time.  My body and brain can’t seem to understand why I am being caressed, if it does not lead to sex.  Stop pawing at me, unless you’re going to come up with the goods.  Or unless, as the anonymous author of the above “article” says, you’re going to put out.

There are, however, people on this planet that do want to cuddle.  That do want to snuggle up with someone, just to be close.  They’d be more than happy to fall asleep and wake up again, limbs entwined with someone else.  For these people, there is no overwhelming need to have sex any time they brush skin with their partner.

Here’s the thing – some of these people are men.

As for, in the article, the man’s “revenge”… guess what?  I am female, yet I do not like shopping.

I have no overwhelming need (in fact, I have no need at all) to wander around town, look at, try on and purchase clothes and shoes.  I buy clothes when the need arises.  The need very seldom arises.  I bought a dress, this month, because I have to go somewhere for Christmas dinner and I have a wedding to attend, next year.  I am planning on wearing the dress on both occasions.

I detest the whole process of shopping and clothes shopping is the type of shopping I loathe the most.  I want to do all my shopping on-line.  If I cannot do that, I want to walk into a shop, pick up the item I need, pay for it and leave.  I do not see this as a leisure pursuit.

Likewise, I see no need to have more than one handbag, as I only ever use one if I am not in my jeans and am wearing something that does not have pockets.  I certainly see no need to pay more than £10 for a bit of small luggage.

Shoes – I wear the same pair of sandals, day in, day out.  I have a pair of CAT boots that I put on if I’m going to be outside in the snow or mud.  They’re the boots I used to wear when I was on my motorcycle.  Of course, I own other footwear – I have things to wear on my feet if I’m in a dress and I own a pair or New Rocks that are so heavy I find it hard to walk in them, these days, and my daughter gets more use out of them than I do, but I have no overwhelming need to own many different pairs of shoes.

The person I know (knew, actually: sadly no longer with us) that owns the most pairs of footwear, you know the sort… buys the shoes, keeps them all pristine, probably still in their boxes… is male.

I wear the same jewellery all the time.  I do not change it.  Occasionally, I will buy something new to put through my nipple, but that will be cheap or it will not get bought.  I wear very nice jewellery that my husband has bought for me.  Once, in my life, I asked him to buy me some earrings.  I did not use sex as a bargaining tool for this.  I do not use sex as a bargaining tool for anything.  Ever.

On the other hand (shopping wise, not sex wise) my husband likes to shop.  He likes to look in every shop, wandering around, looking at every item, and then going back into each shop, sometimes a couple of times, until he eventually goes back to the first shop he went into to make a purchase.  If he’s buying clothes, he has to try things on.  Something I avoid at all costs.

Generally speaking, if he needs to go shopping, I drive him where he wants to go, then I go to the pub and wait for him to be done.

Again, I could blame this on my illness, saying that I can’t walk around that easily and certainly can’t be stood up for that long, but, truth be told, I just hate that experience.  Faffing and um-ing and ah-ing and stopping for an overpriced coffee and back to the faffing.  Sheer hell.

But you know what – he loves it.  And he’s a man.

He’d probably like to come home exhausted from a shopping trip and have a snuggle.

You see, we’re all different.  I am female.  This does not automatically mean I like shopping and cuddling that does not lead to sex.  My husband, obviously, is male.  He would dearly love to snuggle with no motive other than to be close to someone.  Possibly after a day out, shopping.

Now, this post on FaceBook starts with the words “Girls — Please have a sense of humour!”.  I guess this means that I do not have a sense of humour.  Mind you, I am not a “girl”.  As this whole post is about some dick-wad not getting laid, I would like to think he actually meant to say “women”, as opposed to “girls”, but that’s a whole different kettle of misogyny, isn’t it.

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It’s over now, I am reliably informed.  It’s autumn and there’s nowt we can do about it.

Well, good.  I dislike the summer.  I dislike the heat and the sunlight and all that it brings with it.  Its sunburn, hayfever and being bitten by bugs and its tourists and festival-goers and overheated cars and daylight for twenty hours out of twenty-four.

For me, the worst of these is the heat.  Now, here in the UK we don’t get that much in the way of a summer, as a rule.  Of recent years, we get a blinding couple of weeks in late April and another couple of weeks at the end of July or the beginning of August and maybe, like this year, a stupid week or so in late September and the beginning of October.

This week, records were broken.  It got to about 30 degrees (C) and there has not been a cloud in the sky.

“Isn’t it a lovely day!” people exclaim as they pass me in the street.  Well, I have learned that replying “NO!” is unacceptable.  Saying that you do not like hot and sunny weather is like saying you do not like Christmas (don’t even get me started on that – I’ll save that for December), or like saying you like to kick puppies and kittens.  It’s best to just nod and smile and get yourself back inside and out of this hell-on-earth as soon as your legs will let you.

For many people, like me, any raise in the temperature is a bad thing.  I am, at the best of times, slow and sluggish.  Turn up the heat and I come to a grinding halt.  It’s akin to being hungover without all the fun of getting shit-faced the night before.

Hot, sweaty, head-achy, lethargic and with painful joints and muscles.  Yay, summer!

Still, as I say, it’s over now and I can get back to moving with geriatric speed instead of with zero momentum.

Movement has been made easier, for me, over the past month or so, by another dramatic change in my medication.

After thinking that I was going through another relapse, I contacted my MS nurse and subsequently got to see my neurologist, my GP and the Pain Clinic.

The Pain Clinic is fairly useless, to me.  They are there to tell you how to manage your pain.  Suck it up, and deal with it.  They gave me a booklet which is focussed on having chronic back pain and the things you can do to get you back to work, with a bad back.

I do not have a bad back and I am self-employed.

The booklet has a whole section about dealing with your negative thoughts and how you can, when you’re thinking straight, see that these are not correct and that you are being stupid, when you have them.

Well, I do not think I have negative thoughts and if I do, I do not think these are unrealistic.

The example given is as follows:

What was the situation/event?  A friend I normally chat to just said hello and then rushed off.

What thoughts did you have?  She’s fed up of listening to my problems.

How did you react?  Upset, cross, embarrassed.

Your alternative thought:  They may have been rushing for an appointment.

Your new feelings/emotions:  That’s fine, I’ll see them another day.

Well, I think the person concerned, in this example, needs to get a grip, stop whinging and realise the world does not revolve around them.  But that probably won’t be the right thing to say at my next appointment at Pain Clinic.  I should fill in this form and play their game.  I shall try to be honest and truthful with them and with myself.  Let’s see…

Event/Situation:  My neurologist tells me that I cannot have Sativex as he has no-one on it and doesn’t know enough about it and, subsequently, the Health Authority will not pay for it.

Your thoughts:  That’s unfair as I have used this medicine, for more than a year, and I know it works for me.  I also know that there is clinical evidence that it works for others.  NICE even agree and have allowed it to be prescribed to people with MS.

Your feelings:  Upset, angry, worthless.

Your alternative thought:  People like me are not worth the money of a comparatively cheap, harmless drug and the system would rather have me on morphine so at least I shut the fuck up.

Your new feelings/thoughts:  Frustration, anger, incandescent rage.  I’ll make sure everyone knows about this travesty.  I shall take it further.  I shall shout about it from the rooftops if needs be.

Hmm.  OK, maybe that was a bad example.  Let’s try another.

Event/situation:  I pissed myself.

Your thoughts:  My disease is progressing and there is nothing that can be done.

Your feelings:  Upset, embarrassment, helplessness.

Your alternative thought:  At least I didn’t shit myself.  This is probably to come in the future.

Your new feelings:  Upset, embarrassment, helplessness, suicidal feelings.

Right.  that helped.  Let’s see…

Event/situation:  For the fourth time in a row, I did not achieve orgasm.

Your thoughts:  My disease is progressing and there is nothing that can be done.

Your feelings:  Upset, embarrassment, frustration.

Your alternative thought:  I should think about doing other things than achieving sexual gratification.  It’s just sex, it doesn’t matter.  I should ask, again. for the same medication that a man would get offered.   My disease is progressing and there is nothing that can be done.

Your new feelings:  Frustration, utter pointlessness, anger, rage, upset.

You know, I am not doing too well, here.  I have not put these things into my Pain Management booklet, yet.  I don’t know what help it would be.  Maybe it would help them to know, but it’s not helping me.  In fact, it’s making me upset, frustrated, angry and occasionally suicidal.

Can I put a “lol” in here?   Is that ok?

Other than this nice wee booklet, I have also had my medication changed.  It was not a relapse at all, but was just the side effects of the Carbamazapine/Tegretol.  I am off this drug now and on a whole bunch of others.

I am moving very well, at the moment, and my pain is reduced but far from gone.  For this, I am now on Tramadol, having refused morphine.  As I said to my doctor “I have an interesting relationship with alcohol”.  I really do not need something else to smile it’s addictive smile at me.

You can’t have clean, non-addictive, pharmaceutical cannabis but you can have clean, highly addictive pharmaceutical opiates.  As much as you like.  Knock yerself out.

Let’s change the subject, eh?  What else has happened over this last few months?  Family stuff.

Well, my eldest child left home.  Despite everyone telling me that this is an upsetting thing, I feel it to be a good thing.  He is moving on and living a life and, surely, this is what one’s job as a parent is all about.  I feel proud and pleased that he has turned into a strong, independent, adult human being.  The six-hundred miles or so between us was a bit of a shock as was being informed of the move via Facebook, but this is the twenty-first century, after all.  Good luck to him, I say.

My youngest child and I secured a victory over her school, where she is in her final year.  The school reports to be an arts school and is situated in one of the most liberal, freethinking towns in the UK.  The school has had a change of head teacher and the new one is trying to crack her draconian whip.  Hairstyles and colours, styles of clothing, jewellery and any semblance of individuality that did fall within uniform stipulations are now a matter of severe chastisement.

I was called in to school to discuss my daughters appearance (because teaching young girls that appearance is such an important thing is really clever, right?) and we ended up getting an apology from them.   Boof-ting, as my daughter might say.  Although I am not 100% certain of what this means.

Another triumph on my part was being asked to contribute to a fantastic publication that goes by the name of Mookychick.

Mookychick is a weekly online magazine for alternative women. We regularly feature alternative style, beauty, health, relationship and careers advice, music and general alternative culture. If you look closely, you’ll see we’re into social activism and come up with how-to guides on everything from casting a spell that actually works to making a fruit bowl out of a record. These are life skills we’re talking about!

So I wrote about things to do when you’re proper poorly.  And I got the article approved and published on this wonderful, geeky, sassy, clever site.  I am planning to annoy them with further submissions.  Like when you accidentally speak to that annoying bloke, at the pub, who then won’t leave you alone?  That’s me that is.  They’ve shown me a molecule of interest and I have taken that as a offer to be a fully fledged Mookychick.

Bwahahahahaha.

‘Moff now, to read.  eReaders.  I can read again.  Isn’t technology fantastic?

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Asking for help. I’m not good at that. Sometimes, though, I guess it has to be done.

Since I changed my meds, about four months ago, I have had nowt but trouble.  Trouble staying awake, trouble with pain, trouble with walking, trouble with… ah, you get my point.  Trouble.

My problem has been knowing who to ask for help.  My GP, God love him, is not always available and even if I do get to see him and not another GP from the surgery, then he doesn’t particularly know about MS.  None of them do.

My neurologist, he is busy and appointments are hard to get and when you do get to see him… well, this one just doesn’t have the inclination to talk to me.  I can understand that.  I am a cantankerous cow at the best of times and he only gets to see me at the worst of times.  He has better things to do than talk to some bloody woman who cannot be helped.

There’s the MS Nurse.  Now, I like my MS Nurse.  But I really don’t like to bother her.  They (MS Nurses) bridge that gap that so many of us (MS sufferers) can very often fall down.  That’s the gap between no fucker knowing what you’re on about and those that do, not having the time or inclination to do anything about what you’re on about.  Fuckers.

So, I appreciate she’s busy and she’s probably busy with far more deserving cases than I.  I mean those people who are unable to feed themselves or walk at all.  The former of which I can do all too well and the latter I do all too infrequently.  As evidenced by my girth. 

Truth be told, I might be telling the tale a little erroneously, there.

Fatigue is a symptom of MS.  It is debilitating and bloody annoying.  Please read THIS to understand more.  Since taking the Tegretol, I am unable to keep awake.  I sleep in the day.  I sleep in the early evening.  I fall asleep when I’m watching a TV programme I’ve really been looking forward to.  I fall asleep the minute I get into my bed.  I feel like I’m walking through treacle (but I’ll get onto that later).  It’s affecting my sex life.

I said IT’S AFFECTING MY SEX LIFE, God-damn it!

Giving someone, that suffers from fatigue, a drug (Tegretol) that makes them drowsy (to say the least) seems a bit odd.  I expect I was prescribed this drug because I said that I find the sedative effect of cannabis very useful, after I was refused Sativex.  “This’ll make you sleep, biatch!”  OK, no-one actually said that to me, but I bet the neuro was thinking it when he prescribed it for me.

I have been taking it since March.  It’s July.  I slowly increased the dose, as prescribed, but thought that, by now, my system would have acclimatised to it and this damn side effect would have subsided.  But no.  Maybe it’s not a side effect.  Maybe it’s an MS thing.  Meh.

My left eye has become quite useless.  I don’t know how much of that is to do with the fatigue, I understand why it might be, but you’d think that it would be both my eyes, if that were the case.  I have previously suffered from optic neuritis (which scared the shit out of me).  This was many years ago and I have never quite recovered my eyesight, but it has deffo become bad again of recent weeks.

Again, this could be because of the fatigue, which could be because of the Tegretol, or it could be an MS thing.

I have become quite (read “more”) clumsy, over the past few weeks, too.  I have dropped and broken enough glassware to warrant getting some more.  Like I can afford that, right now.  Thankfully both Tesco & Morrisson have cheap “first home” glassware at the moment.  £1.00 for a set of four glasses.  They’re not pretty, but they do the job and don’t break when you drop them in the sink.  I have tested this.  Not intentionally, you understand, but tested it none the less.

My thinking behind this particular bit of annoyance is a bit of a numbing of my right hand and arm.  Actually, it’s more of the right side of my body than just my arm, but I’ll get on to that, later.  But my hand and arm… when I first had MS symptoms, I was numb and tingly in both arms and legs.  Left and right.  It’s like that, a bit.  But just the right.  I also wouldn’t say it was tingly, like before.  That was a bit “pins & needles”-y.  It’s not like that.

It is, however, causing me to constantly mistype – mainly missing out characters, with my right hand, and that’s quite annoying.  I am very glad of spell-checkers and the like, for pointing out some of these errors, but sometimes the resultant word I have typed is actually a valid word, so they don’t always show up.  More often than not, thereisnospace when there should be a space.   Annoying.  Especially when you spend as much time typing as I do.

Grrr.  Now I’m just listing what’s wrong with me, at the moment, and that’s annoying.  But, seeing as that is what I appear to have started to do, I might as well carry on.

I said, earlier, that it feels like I’m walking through treacle.  Well, I doubt that that many, if any, of you have walked through treacle.  Nor have I, for that matter.  So… think of when you’ve been in a swimming pool for some amount of time and then go to hoik yourself out of it and take a step.

You know how you feel heavy and cumbersome where, just a second ago, you had felt almost weightless and speedy?  That.

Ok, not that, as I can honestly say I have never felt weightless and/or speedy, but you get my point.  I hope.

I am really having to think about walking.  Taking steps like you might notice an older person, with a false leg, doing.  If I don’t really concentrate on what I’m doing, then my feet just drag and fold beneath my legs.  Not good.  My right foot and leg are, you guessed it, a bit numb.  And I feel like I’ve lost a lot of strength.  I didn’t have that much to start with.  Again, a fatigue thing, or a side effects thing?  I just don’t know.  I was at a loss as to which side I use my walking stick.  I really didn’t want to use two as I knew I’d just get tangled in a knot, trying to do that.

After much deliberation, I bought a walking frame.  Not a Zimmer Frame, but a “rollator” which is kind of the same thing, but with wheels.  Classy, huh?  Well, after a while of letting it sit behind the door, I brushed off the vanity and actually used it.  I am trying to remember to do so if I know I am going to be walking for quite a while.

You know, I quite like it.  It stabilises my gait and I can actually go faster with it than I can without.  It has a wee basket on the front and, mega bonus, it doubles as a chair!  I can see I’m going to have to find a picture.

This is getting boring, isn’t it?  If certainly is for me.  Well, I have lost sensation in other parts of my body, too.  Just read back to my initial diagnosis story to know for sure what I’m talking about.

Above all else, my pain has increased.  I’m back to where I was many years ago, pain wise.  My hands and calves especially.  My calves have become so riddled with cramp (even though I know it’s not really cramp) that any chance of doing my 30 minutes of step exercise, on the Wii, every day have long gone.  The last time I complained of that particular pain, to a non-MS related medic, I ended up getting tested for deep vein thrombosis, so I tend to keep quiet about that, if I can.

So, I’ll cut to the chase, as it were.  What have I done about all this bullshit?  I have asked for help.  I have phoned my MS Nurse and am now awaiting a call back, which, I know, will probably not be today.

What am I looking for in the way of help?  I really do not know.  If this is a side effect thing, then they’ll possibly want to change my meds, again, and that is a real ball-ache.  However, if it reduces my pain and side effects, then it’s worth it.

If it’s a relapse, then I suppose I get shot up with steroids for a few days.  It means a stay in hospital (which could be problematic as I am the only driver in this house) but generally means a vast reduction in my symptoms.  Not removing them completely, but near as damn-it.

We’ll just have to wait and see, I suppose.

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When I die, whenever that may be, however it may happen (unless I am somehow fed into a giant grinder, like the school kids from The Wall by Pink Floyd, which could happen, I suppose), there will be some *ehem* substantial amounts of meat and giblets to be done away with.

I’m not talking about whether I get burned or planted, as I believe both of those options to be wasteful and pointless, but what use my body can be, after I’m done with it.

Of course, I am on the Organ Donors Register (as I hope you are), however I am not allowed to give blood, due to having MS.  Now, I know that they tend to just use your organs regardless of illness (bar HIV & CJD) or lifestyle, which obviously they do not do with blood, which I find quite odd, as blood can be cleaned (of most things), yet organs cannot be cleaned of, say, cancer.  And it has been known for someone to receive a proper poorly organ, before.  Is it OK to say that cancer is “proper poorly”?  Meh,  just did.

So, despite Multiple Sclerosis not being in any way blood borne, I am still disallowed from being a blood donor because of my illness.  Even the operatives in the blood donation unit said that it made no sense but them’s the rules.  We all know that blood donation is full of absurd and discriminatory rules (like the ban on homosexual men donating, yet heterosexual woman can donate – didn’t really think that one through, did they?  I know far more straight women that are very lackadaisical over safe sex than gay men that have the same attitude) but anyhoo, that’s another topic for another day, and there are people more informed than I to talk about that.

I am on the Organ Donors list and it’s on my I.C.E. information, on my phone.  Oh, right… In Case of Emergency.  We are asked, by the emergency services, these days, to all have at least one contact in our phone named “ICE” and then the details of who the paramedics should call, should something really nasty happen to you, and you’re on your own, and you’re incapable of letting them know this information.  In short, if you’re really fucked up.

So, ICE-John-Husband would be the contact name, if your husband was called John and you wanted him called, in case of an emergency.  Of course, you could have ICE-Jane-Mother instead (if your mum is called Jane) or you could have both of those ICE contacts, in case the one or the other is unavailable or, even, with you and similarly in need of the emergency services.

But, as most of us have smart phones of one sort or another, these days, and if you Google “ICE apps” you’ll get this page, with a list of many, usually free, applications that will suit your phone.

I use ICE 123 for my phone which holds three contacts details for you and has (limited) space to put in your medical information.  The first words on mine are “ORGAN DONOR”.  I think it’s important.  It has a bright red logo which I keep on the dock bit of my iPhone screen.  You know, the four apps that are always at the bottom of the screen, no matter what page your on.  Not that I’m planning to have a horrific accident or anything, but well… you know.

OMG, just look at that image.  It couldn’t be more different from mine!  It says “My health is fine”. 

Organ donation seems like such a no-brainer, to me.  I’m dead.  Have it.  If it can be used by someone else, then just do it.

Right, so we have ascertained that if they want any of my organs, they can have them.  But then, I have heard that medical students are in dire need of cadavers.  It appears not enough people are leaving their bodies to medical science, these days.

Sometimes, this can mean that the first time a surgeon cuts into actual human flesh could be when he’s actually operating on a living person.  Like you.

So, I’m thinking I should also sign up for this.  I mean, the NHS have been mightily helpful to me, over the years, and there has been invasive surgery – from a tonsillectomy, through a lumbar puncture, to a caesarian section and plenty of other, more minor stuff along the way – and each of those surgeons and their teams have had many years of intensive training, in which they will have needed a cadaver or two to learn on.

I have always agreed to allow junior doctors, or anyone training, to be present, whenever I have been asked, and have, over the years: been a case study for junior obstetricians in their exam whilst I was pregnant; had a bunch of medical students looking at my snatch after I had just given birth; had the same tests done by five different junior doctors (each one trotting off to get another to “just have a look at this!”) pre MS diagnosis; trainee neurologists or neurology nurses sitting in on the most personal of discussions with my various neurologists; oh, you know, I’m gonna stop with that list… take it from me, there’s lots.

It therefore seems to me that the natural conclusion to my life would be to let a medical school have my body, after I’m done with it, so that I can be of some use to the very type of people that have ensured it was of as much use as possible, to me, whilst I was using it.

But then I got to thinking about whether they’d want it, after I had had all my organs harvested, via the organ donation thing.  I’d be covered in scars and, well, basically empty.  Imagine being told to cut into an abdomen to locate and remove a kidney that someone had already had away.  This is a problem.

So I looked into what you have to do to donate your body to medical science.  That was one of the weirdest things I have ever Googled, that’s for sure.

I found the following information on IfIShouldDie.co.uk

How to Donate Your Body

- Fill out a consent form which can be obtained from your local medical school.  Your signature should be witnessed and the document kept with your will and a copy lodged with the medical school.

- Two donation options are available – ‘non-retention’ and ‘retention’.  Non-retention means that the medical school cannot keep any of your body parts and after three years, the body is cremated or returned to the family for burial.  Retention means that the medical school can retain parts of your body for future use.

- You can donate your body at any age over 17. It makes no difference what age you are, although they are normally refused if there has been a post-mortem examination or any major organs (other than the cornea) have been removed.

So, there we have it.  You can’t do both.

But then there’s a third thing I had thought about doing, after I die.  That’s donating my brain & spinal cord to an MS tissue bank.

Apparently, they want this.  I remember reading something in New Pathways, the Multiple Sclerosis Resource Centre‘s (most excellent) magazine.

Well, they can have it.  As I say, I’ll not be using it.

HERE is a very comprehensive page from the UK Multiple Sclerosis Tissue Bank.  It tells you everything they do to whip out whet they want and send the rest of you home to your nearest and dearest.  What it doesn’t tell me, however, is if the remaining organs in my body can also be harvested by the people that might want them.

I phoned their helpline.  I got an answerphone.  As I want that information NOW, I did not leave a message.  There is an email address, so I may email them my question and let you know, as and when I get an answer.

As I am writing this, I am getting more of an idea about who should get my body.  If it is possible, I think I would like my brain and spinal cord to go to the MS Tissue Bank and my other organs to be donated to help someone else live, after my death.

If that is not possible, then I am still in a bit of a quandry.

Update – 20 June 2011

Just received a reply to my email about this, from the MS Tissue Bank:

Hi Vic

You do not need to choose, there is no conflict between organ donation and brain donation.  Organ donation takes priority in a theatre and then the brain and spinal cord are retrieved once the body is transferred to the mortuary.

If you would like an information pack, please let me have your postal address and I will send one out to you.

Kind regards

Brill!  I have, of course, sent them my address!

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So, Denmark has banned Marmite {Update – Or has it!?!} and the Twitterverse is mightily upset.

Ok, I know that some of you don’t do either Twitter or Marmite.  I call you people mistaken.

Here is the BBC’s news story on this travesty but if you can’t be bothered to click that and read an unbiased take on things, here is mine instead.

The foolhardy Danes do not allow added vitamins and minerals in their foodstuffs.  Therefore you can no longer have the delectable wonder that is Marmite, if you live in Denmark.

I think this is a travesty.  I do not live, nor have I ever visited, Denmark.  And you know what?  It’s never going to happen, now.

Is one allowed to take Marmite with you, if one were to go and stay there (like I do when I go and visit my in-laws, in the US)?

I’m not prepared to take the risk.

Anyhoo… my main reason for writing, today, is another travesty.  A slightly similar travesty, but a travesty, none the less.

It has been brought to my attention by @NorksAndBacon (on Twitter, natch) that there is a distinct lack of pictures of norks and Marmite on t’interweb.

Of course, I offered to rectify this.  Brazen, attention-seeking, Marmite lover that I am.

However, I don’t know as they’re really the kind of thing to add to the photo gallery on the VixPix site.  Meh, I’m gonna do it anyway.

It has crossed my mind that the previously mentioned Mr AndBacon may be wrong and there may, indeed, be pictures of Marmite on boobs.  You know what… I haven’t looked.

Having told the hubby about this, I’m sure he’ll go check for me.  All in the name of research, of course.

So, whether they’re already out there or not, here’s a few pictures of just that.  Marmite on boobs (or norks, if you will).

So, click HERE if you want to see a very silly, Marmitey, booby photoshoot.

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Helps the medicine go down, right?

Well, I’m not a fan of sugar, for starters.  In fact, the only sugar we have in the house is a bag of Demerara (for the occasional use in cooking) and a box of white sugar-cubes (for use in preparing Absinthe).

We do, however, have lots of medicine.  Well, I do.

I never thought I’d be under the pill popping regime that I am currently following.  Right now it’s very complicated because I am in a transitional period between two drugs.  The result of my neurologist saying he had “other options” for me to try, because I can’t have Sativex.

Here’s what I was taking, up until a month or so ago.

In the mornings, I take 100mg of Celebrex (Celecoxib) an anti inflammatory pain reliever, 15mg of Lansoprazole (to counter the ulcer inducing effects of the Celebrex) and 300mg of Gabapentin, a pain reliever for peripheral neuropathic pain (which is also used to treat epilepsy).

In the evenings, I take the Celebrex and the Gabapentin and 15mg of Mirtazapine, an anti-depressant.

I was supposed to take another 300mg of Gabapentin half way through my day, but I refused to do so, due to the side effects.

You see, until I saw the Neurologist, in December, I was taking 100mg of Gabapentin in the morning and another 100 in the evening.  The Neuro told me that he wanted to up this to 900mg over the course of the day.

Now, I slowly increased it to the 600mg and found that although it was stopping some of my twitching, it did not stop, or even reduce, any of my pain.  And to make things worse, it appeared to be halting my ability to orgasm.

Of course, it could be co-incidental that this happened at the same time as I changed my drug regime, but I seriously doubted it.

Losing your ability to orgasm is a serious issue.  As I said to the Neurologist, if I had been a man, he would not even be questioning me about the importance of this side effect.

He said that there was nothing listed with regard to female orgasm, on the list of side effects.  (Go figure).  But, impotence in men was listed.  Well, thanks for that… I guess I am alone in reporting this issue.  Well, I am not surprised, because we (women) are never asked about sex.  Never.  I may have mentioned this before. 

Anyhoo, this is part of the reason I refused to up my frequency of taking the drug… that and I was feeling more stiff in my legs.

Oh, and on three days a week I still shoot myself up with Rebif (Beta Interferon) – the Disease Modifying Drug (DMD).  I reported, some while ago, that I was injecting into my belly.  I have stopped using my belly as I was getting really bad marks there, from the jabs.  Like big red bruises that didn’t shift.  I now inject my thighs, which hurts more, but the red welts vanish after a couple of days.  (This shit is important when you get your kit off for a living!)

So, I tell the Neuro, when I go to see him in January, that I am not getting along with the increase in Gabapentin and he suggests I try another drug.  I will have to transition between the two very slowly.  He will write to my GP and get him to prescribe it.

The new drug is Tegretol (Carbamazepine).  This drug is used for epilepsy, trigemal neuralgia (a painful condition of the face) and serious mood disorders.  There is no mention of neuropathic pain.

I started on 100mg a night, cutting out the Gabapentin that I did take then.  Then I had to do another 100mg in the morning, but still take the Gabapentin.   Then I had to add another 100mg in the middle of my day.

This is where I am now.  I left two weeks between each change.  Next week, I shall drop the Gabapentin all together and up the evening dose of Tegretol to 200mg.  Two weeks after that, I will up the lunchtime dose to 200mg and then do the same to my morning dose, two weeks after that.

You still with me?

Side effects wise, I am finding that I am in a lot of pain and increased spasticity, for a few days, after I add/change a dose of Tegretol.  It is also making me sleep.  A lot.  I am falling asleep on the sofa, in the evening, for a few hours (like three or four) and I mean properly asleep… not dozing.  You’d think that this would cause me to not be able to sleep when I transfer to my bed, but no… I’m out like a light.

The increased pain and spasticity usually subsides within three or four days but comes back on the next change.

Orgasm wise… things seem back to normal, which, for me, is the ability to cum as and when I please.  (Don’t look at me like that!)

I’m leaving the last dose increase to be the morning one, as I have to drive, in the mornings.  This is a “do not drive or operate machinery” drug.  But, like most people, I have to.

I was confused with the instructions my GP gave me, about changing from Gabapentin to Tegretol, so I asked him to write it all down.  I forgot about “doctor writing”.

So, it appears, having had a translation from someone that reads “doctor” that I have done it all wrong, but there ya go.  I am slowly transitioning from one med to the other, so I guess the end result is the same.

In another week, I shall start to up the amount of my evening dose, which will give me another few days of increased spasticity and pain, which will go, until I increase the next time.

As yet, I am not feeling any decrease in my “normal” amount of pain.  This is why we are changing meds, after all.  This is the whole point.

I will do as instructed and give the drug a good go, though.

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