Understand me..

Depression. Just that alone is enough for one person to deal with and live with. I know how the mind plays tricks. I know when the voices start, that it's time I visited my Psych Team. The mere thought of that fills me with dread. I envisage, packets of Anti Psych Drugs. I cannot abide those types of drugs in fact I've argued and pleaded my case many times to my Psych Team to be able to prove that I fair better without Anti Psych Drugs. I've used my creativity to 'medicate' my madness. I managed almost five years without a full blown episode. Well, now the depressive episode now has me in its grips. Raging black moods, irrational thoughts and feelings. Outspoken words whilst in the grips of hell, which some I'm not aware, or I've even said. I don't suppose you can expect those that don't live it to fully understand. However, there is always compassion. Something devoid in the maternal part of my estranged family. Yet I'm ridiculed by those less fortunate, with the thinking capacity of an amoeba. Laughed at by those who want to see me hurt and pay. Poked fun at by those who are a little unstable themselves. Oh how the high and mighty will fall.

Over the last few weeks I've struggled and battled with the ideation of suicide. That would make it all better wouldn't it? No? oh yes that's right, my suicide would leave my children without their mother. My husband without his wife. Would the torment end? Or would it continue? I don't know.

I feel that exquisite moment approaching. That point of no return. Even the thoughts are frightening. It will be end all the pain and suffering that you THINK I deserve. You think I blame every aspect of my life on illnesses. I'd expect that from someone who's insensitive, lacking in any real true emotion other than anger and rage.

It's like being in a dark hole wondering how the hell you got there. It's sticky in there with all your raw emotions for company. Flicking through happy times overpowered by memories of arguments and cruel words. It's a heavy numbness, with the false nothingness within the mind. It is that precise moment when you make your descision to end it all or even try. There is a calm fear that buzzes through your body as your blood pumps around your vital organs. Then you wait for the blanket of darkness to snuggle you into comfort.

It says something that the final moments that you feel at ease with a blanket of darkness while the movie plays through your mind of happy times and sad times. The tears sting your cheeks and they roll and collect momentum. Soon, you're swimming in a sea of salty tears and yet you still wait for peace to come. It never does come, because you are dead and you cannot feel peace. You feel nothing. The only ones feeling are the ones left behind to pick up the pieces. Death is very final, in the search for peace and quiet it is final. Is that what you really want? No? you want me to live and suffer. Here's the thing, everyday I suffer. I've been diagnosed with the following.

Bipolar Dx2003
http://en.wikipedia.org/wiki/Bipolar_disorder
Schizophrenia Dx2003
http://en.wikipedia.org/wiki/Schizophrenia
DID Dissociative Identity Disorder Dx2007
http://en.wikipedia.org/wiki/Dissociative_identity_disorder
Borderline Personality Disorder Dx1997
http://en.wikipedia.org/wiki/Borderline_personality_disorder

Fibromyalgia Syndrome Dx2004
http://en.wikipedia.org/wiki/Fibromyalgia

As this is a syndrome, also includes the following
Allodynia
http://en.wikipedia.org/wiki/Allodynia
IBS
http://en.wikipedia.org/wiki/Irritable_bowel_syndrome
Bladder Problems
http://en.wikipedia.org/wiki/Interstitial_cystitis
Muscle Spasms
Muscle Weakness
Muscle Pain
Nerve Pain
Temporomandibular Joint Disorder
http://en.wikipedia.org/wiki/Temporomandibular_joint_disorder
Bruxism
http://en.wikipedia.org/wiki/Bruxism
Trigeminal Neuralgia
http://en.wikipedia.org/wiki/Trigeminal_neuralgia
Myoclonus twitches
http://en.wikipedia.org/wiki/Myoclonus
Paresthesia
http://en.wikipedia.org/wiki/Paresthesia
Hypoglycemia
Borderline Diabetic
Cognitive Memory Impairment
Prolapsed Disc Dx2009

Yes, my children will miss me. My husband will miss me. My Mum and Dad will miss me. My MIL and FIL will miss me. My friends will miss me.

Stigmatic Opprobrium

Evil, Vile, Obnoxious, Toxic, Nasty, Vicious, Dishonour, Slur, Scandalous, Contempt, Aggression, Disapprove, Scum, Shameful, Vulgar, Hateful, Disrepute, Tarnish, Blemish, Aspersions, Demonic, Belittle, Slander, Abuse, Poison, Abasement, Ostracise, Scornful, Ignominy, Malignant, Reproof, Smear, Repugnant, Maladjusted, Loathsome, Object, Blame, Fail, Vilification, Carping, Insignificance....I'm all those things aren't I?

Shannon, you're right. So very right. x

It's a little bit funny this feeling inside..

Life has taken a big dive. I'm in the depressive side of my Bipolar. It's been a long time since I've had a full blown episode. I'm unable to work like I was. I spent most of my days in a dark room and this feels safe to me. I don't want to go out anywhere unless I can help it. I don't want to talk to people except my husband, my best friend and the one person I can wholeheartedly trust.

Everything that has happened over the past three years has hit me like a ten ton truck. I lost my Mum and my Sister. They think I'm a monster I'm sure. I am sorry things have turned out the way they have. My sister thinks she is right. I know she isn't. She doesn't know, nor will she ever know how Dad feels. That is your loss. My mother is probably being manipulated into what she thinks is what she thinks. Weak, yet no one truly understands how it feels to be abused as a child as like another Survivor.

There are three innocent children here who have lost a Grandmother, Auntie, Cousins. There is a big void in my life where they lived.

I've come to the conclusion now that people do come and go throughout your life and there is a reason they are there and it's to teach you what is acceptable and what isn't. Some stay and some go. Some go with blessings and some go under a cloud.

Recently I fell out with someone, who I though I could trust and rely on. Mostly it was a good friendship. She used to let me down and usually at the last minute. I let it go a few times but I never forgot it. This happened more often towards the end of the friendship. I just got to the stage where I thought you know what my time is precious and I will not spend it chasing after flaky mates. This friend once told me that she hadn't had a proper diagnosis for her illness. She said that the consultant said it maybe *not certain* a particular illness. Now, why would someone say that? You either get a diagnosis or you dont? You know who you are. You let me down many times, for me to continue to be friends with you. The argument we had was unnescessary really and I am sorry for that. I will never forgive you for dishing out my private and mobile telephone numbers to your father who threatened me. What are you? Five? Your antics online made me question who you truly was as a person. You know what I'm talking about. Messing with someone's husband is not on! I didn't know what to believe. I mean was it really true??

I am a good person. I know I tried my best and do try my best with everything that I do. My life is difficult enough without all that playground stuff to deal with.

I have a handful of good friends in my life. I know this because when I speak to them it's like we carry on as we left off and visa versa. True Friends dont drop you like a hot potato because a better offer comes along. I cannot stand behaviour like that.

I've been on Venlafaxine for just over a month now, it's making me feel so sick. It was really bad in the beginning. Now it's calming down a bit. My moods are still all over the shop. I'm not sure if I'll stay on this drug for long. We will see. I don't tend to get along with sorts of drugs as they can trigger Mania. This has happened before with drugs like Prozac and Seroxat. I'm not so keen on the Brain Shocks either.

So, I shall keep plodding on...

The Spoon Theory written by Christine Miserandino

I am a Spoonie! This is the perfect way to explain Chronic Illness. I find it offensive when people laugh and joke and say " Is there anything else that is wrong with you? " Oh HAHAHA! sure because I wake up every single day thinking what can I discover today that doesn't work with my body. Forget about the level of pain I'm in. I did not ask or deserve this condition so please don't patronise me with your ignorant comments. I had a car accident in 1997 and had severe whiplash injury as a result of being shunt by a 4X4 into oncoming traffic by some bint on her mobile phone and on Daddy's insurance. There is a significant link with Whiplash injury and Fibromyalgia. Lots of articles on the web available to read. My Rheumatologist said there is a genetic link also. My Cousins suffers with Fibromyalgia and another Cousin has the symptoms from both sides of the Family. So excuse me for having many symptoms, severe pain, allergies, IBS etc...how about a little compassion..

The Spoon Theory written by Christine Miserandino

The Spoon Theory


by Christine Miserandino www.butyoudontlooksick.com

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".

© 2003 by Christine Miserandino Butyoudontlooksick.com

Rocky Horror Party

We only do this sort of thing on a weekend lol..only joking I wish! After receiving our invite to a Rocky Horror Show Party, great I thought then eek! What am I to wear? Doing a Kaye as per usual leaving things to the very last minute shopped in lots of Lingerie shops yesterday in the hope of finding a suitable outfit for the Party. Finally after two trips into town 'we' (husband and I) found our wears, wigs etc. While I adore the Rocky Horror Show, I'm self conscious of my voluptuous shape, so I found the whole shopping experience such a giggle.

Here is my husband and I, or should I say Magenta and Frank-n-Furter

We walked through the village, while drivers rubbernecked as they pasted haha! We made many folk smile on the way to the shindig! Thank you C & J for a fabulous evening. Perhaps next time it should be Super Hero's

Copper Cored Pandora Beads.

Ahh it's that time again, lots of craft fairs and local sales coming up..I've worn myself again working like a machine. I've been coring Pandora or Big Hole Beads in Copper. I think they look fantastic. The copper doesn't touch the skin but will eventually oxidise into a warm coppery hue. I love the contrast against the Sterling silver.

Persian Jewels Pandora Beads - available in my Folksy Store from £6

I've been trying out fabulous new glass. Canyon De Chelly is difficult but once you get the hang of it and how to handle the glass it's super cool!

Canyon de chelly cored in Copper.

Pretty Copper Green Glass and Red Copper Green

Copper Green Glass, Moss Agate, Canyon De Chelly and Red Copper Green

I'm still learning with the double helix so here is some purples with some Psyche DH

I have hundreds more photos so if you'd like to see more join me at https://www.facebook.com/pages/TripleMoonStar-Jewellery/90817749656?ref=ts

Laters - Kaye
x

The Winner is?! ....

Winner is Janis Smith. Well done please let me know if you wish to recieve the earrings or the beads. x