Friday, July 29, 2005

There's no love here!

Sometimes even when you know that someone is wrong for you chose to ignore the signs just for that short lived feel good factor. I guess that’s how I got into this mess. Well February is that time of year when love permeates the air and you feel particularly alone because you have no one to share stuff with and the atmosphere around you makes it blatantly clear that you are on your own. Now don’t get me wrong I like my own company I think I am terrific (well most of the time) but sometimes there is such a thing as too much of a good thing. Sometimes you just want to feel the warmth and contact of another person.

There I was sitting there minding my own business. The house was quiet and still. No TV or music (I know this is unusual) just the rhythm of my thoughts to keep me company. The silence was deafening and begged for some relief. So when it appeared I jumped at the opportunity. Only thing is that opportunity showed up in the guise of mr lupus well what’s a girl to do when a man pays them some intention. You know the time when a man you don’t particularly like pays you attention just at a time when you are vulnerable and your defences are low they say a kind word, give you a smile or simply show up and there you are weak and defenceless and susceptible to his wicked and mischievous charms. Well this was no exception. mr lupus came to me and although I knew better, my inner spirit and my senses told me no, I succumbed to his charm and charisma and although I am ashamed to admit it I let him seduce me. There I have said it. I was seduced and although I knew it was wrong I couldn’t help myself (but I'm sure you have been there too!)

Well mr lupus is obviously quite adept at situations like this. I know that this is not the first time he has behaved like this and I have this awful feeling that this is not going to be the last. Well in ordinary situations this would probably have been quite a cool seduction let me tell you how it went. Are you sitting comfortably you are going to like this one. Well he started by whispering soft and gently in to my ears first in the right ear and then in the left. He ran his fingers softly and gently down the side of my neck. His touch sent a warm tingling sensation down the whole of my body. He then worked his way slowly down every inch of my body gently massaging my thighs working his way down my legs before lingering over the soles of my feet and sucking my toes one by one.

Just the tenderness of his touch made me feel special, loved and warm I didn't want him to stop I guess that’s how I would have liked it to have been. But that was just part of my colourful imagination. In reality mr lupus was far from gentle he ravished my body without a second thought simply for his own selfish satisfaction leaving me to pick up the pieces and deal with the scars of his presence.

But I guess it gives a whole new meaning to looking for love in all the wrong places.

Thought for the day
Don’t be afraid to ask for help when you need it

Thursday, July 21, 2005

A Recipe for Well being!

I can officially report that Chemotherapy is not a pick me up, but whilst it took up most of my day yesterday (or was that the day before) and has left me with a lot I would like to share with you; I’m going to save that for another day. Today I want to talk about something completely different.

I want to talk about prescriptions which according to the dictionary are medicine or treatment, it’s also an instruction, recommendation or direction.

I feel eminently qualified to talk about prescriptions as I seem to have collected enough of them in recent months to fill a small wall but all of those prescriptions seem to be for one drug after another, a drug to help the problem and another drug to help the problem that the other drug has caused and then yet another drug to counteract the combination problem that the previous drugs have created and so the list goes on… but surely if doctors were really serious about your health and well being they would issue prescriptions for other things. How about a prescription for tender loving care or one for a series of spa sessions or for a daily full body massage?

I would happily fill prescriptions like these but that’s not what the medical profession is all about so it stands to reason that we have to take responsibility and take matters into our own hands, so I’d like to suggest that if we have to fill doctor led prescriptions that we also create some of our own after all we are part of or should be part of our own expert medical team.

I was given a prescription recently, I must admit it was an under the counter prescription but I was eager to try it out as it had nothing to do with swallowing little red or white pills and it was far more potent and more appealing, just reading it brought a smile to my face.

On reflection however, I think it was probably more like a recipe for well being, so maybe that’s what we need to call it. I’ll share mine with you and then your task will be to create a recipe for your own well being.

A cupful of Laughter
An ample helping of Fun
Unconditional Love and Support
A healthy serving of good Food
A sprinkling of good music
Good company

I was given a location and all I needed to do was to turn up and I didn’t even need to bring anything except myself.

This is how my recipe for well being turned out. It was a fine summer afternoon and the day before Chemo; my mind was a bit apprehensive but I was open to possibilities. Having negotiated my wardrobe I was dressed in light and comfortable clothing and open for what was on offer.

I arrived at my destination to find three other people two male and one female busying themselves. The two men were preparing an elaborate feast of different foods, different textures, delicate flavours and different colours all set to not only tantalize the taste buds but also to stimulate and support the mind.

Myself and my female companion who is now my lupus and chemo buddy (she is dealing with both cancer and lupus) got together for a bonding session and gave the men space to finish their work (the only thing that was missing was for them to have appeared in white aprons with bulging biceps oops that’s another fantasy)

We chatted easily until we were called to dine. And what a dining experience it was. We were served a delightful array of food and spent the next 7 hours, laughing, crying, chatting and generally feeling supported, pampered and loved.

At the end of the day when both my feet and my female companion’s feet began to swell we were treated to a welcomed foot massage. Now I’d say that this was far better than anything any doctor could have prescribed wouldn’t you.

So what would your recipe for well being look like?

I learned some valuable lessons that day:
It is possible to find an oasis in the midst of my health challenges
You don’t have to be alone in times of trouble
Sharing doesn’t just have to be about good things

Create your own recipe for well being, it can be anything you like but do it now as you owe it to yourself.

Thought for the day
Find yourself a supportive group of friends. It doesn’t have to be a large group just people you can connect with and who will support you through what you are experiencing.

Wednesday, July 20, 2005

Chemotherapy is not a pick me up!

This is left over from my summer chemo but I thought I'd share it anyway.

Four and a half hours had gone passed before I finally left the hospital I even had fish and chips for lunch. I am still wondering how hospital kitchens still manage to mess up simple chips (answers on a postcard please) I mean it looked like potato and smelt like potato but something was distinctly lacking from the taste and I know it wasn’t about my taste buds. And the thing that makes me laugh is the line at the bottom of the menu that says I hope you feel better soon clearly this is not going to be with any help from them what so ever so Jaime Oliver we are waiting for you.

Leaving the hospital I was given a warm hug from the sun and I really felt full of the joys of summer in fact I felt the best that I had done in a long time and a lot more like my old familiar self. Whoopee that must mean that things are back on an even keel, I just don’t understand why I ever thought that Chemo would be bad thing. Full of energy I couldn’t decide what to do with myself. I needed to take advantage of this new found energy and drive I treated myself to an ice cream after all this was a celebration and with everyone else beavering away hard at work this was a party I would have to host on my own.

Upon arriving home I decided to sit out in the garden and read a book and get my stuff together for the afternoon cook up. One of the good things that has come out of this is that I am fast becoming a culinary delight in the kitchen Jamie, Nigella, etc would be oh so proud of me.

I made some calls, chatted happily, enjoying my culinary fare and watched television before retiring to the warmth and comfort of my bed.

After a relaxing sleep I awoke the following morning still energized and full of the joys of just being alive. The past few weeks seemed like a dull and distant memory. I was ready to meet the world again on my own terms. I rang up about helping out at an exhibition for the day I could do it I could stand on my feet for 5 hours and exchange friendly banter with stand visitors so why wouldn’t the organizer let me. Something to do with me needing to rest and it being a long day I was convinced she didn’t understand I was feeling and looking like a million dollars (okay maybe I should say more like half a million dollars but anyway pretty good)

After trying unsuccessfully to persuade her that I was right I put the phone down and pondered on how to energetically fill my day. And that was when it happened that spectacular feeling of being hit by a truck and run over by a steam roller yes that euphoric high was obviously a left over from something else probably the Prednisolone kick. Chemo hit me with all guns blazing; I even had to go back to hospital to check out whether that feeling was normal, apparently this is all perfectly normal which challenges my whole definition of what normal really is. But an upside is that I did learn a valuable lesson that day. The Tortoise in its’ race with the hare had the right idea, everything in moderation, pace yourself and you will always be a winner.

Thought for the day
Learn to pace yourself make sure brain and body are engaged before taking action. Sometimes your body doesn’t hold up its end of the bargain

Monday, July 18, 2005

Desperately seeking sizzle!

I’ve lost it. I woke up this morning to find that it had gone. I have looked for it everywhere but I just can’t seem to find it. It’s as if mr lupus came in the night and stole it. he has been quite crafty, keeping me busy else where so that he could sneak in and do his dirty work. I spent so much time over the last few days fumbling around in the darkness that I forgot to keep my eye on one of my most valuable assets – my sizzle.

I have always relied on the natural spark from my sizzle to get me through. That spark is responsible for igniting the flame that burns deep within me spurring and cheering me on through good times and bad, with the energy and excitement of a young child. It wasn’t something that I needed to work at, it just showed up when I needed it, but the combination of Prednisolone and Chemotherapy over the last few months seems to have taken their toll and today the intensity of that spark has diminished and my sizzle is no longer alive and well.

Externally all seems to be as it always was, in some ways even better. I am convinced that mr lupus has a particular penchant for hanging out with people who look extremely well. I am amazed at just how many people still comment on how well I look, (I’ll appreciate the value of this when the sizzle returns) but that’s just on the outside, internally the spark that lights my inner flame is almost out.

I know my sizzle has left the building.

Is this it, will I no longer be filled with the joys of spring even when it’s cold and miserable outside?

With the advent of Chemotherapy on Tuesday and all the stuff it brings with it, the prospect doesn’t feel too good (but I know that’s just the sizzle-less-ness talking)

I’m unable to get my head around any of this at the moment so as I search for a new focus I am reminded of something a friend said to me recently “..things like lupus and cancer are just words and not a sentence. It is my choice if it is becomes a sentence...”

That’s it I’ve decided, in the embers of my sizzle I am going to hold on to her sentiment. lupus is just a word and not a sentence. This is a process that I’m going through and I just need to acknowledge it as such and treat mr lupus with the contempt in which he deserves.

Tonight I’m gonna get some rest to give my body a chance to recharge and gather the energy needed to make a counter attack. mr lupus may have won the battle today but the war is far from over. In the immortal words of Scarlett (Gone With The Wind.) .”..tomorrow is another day!”

And just in case you were wondering, I will get my sizzle back!

Thought for the day

Remember choice is the most powerful weapon you possess

Sunday, July 17, 2005

No it's not helpful!

Haven’t you put on weight!
Why is it that people feel they have some God given right to share this startling revelation with you? It’s as though if they don’t tell you at that precise instant something dreadful will happen either to you or to them (and I suspect it is purely personal)

At a moment when you least suspect it and employing all the style and finesse of an exploding bomb they simply blurt it out. They don’t even wait for an appropriate moment (if there is such a thing) and without any real assessment of the situation or condition they simply drop that one liner and then they feel relieved. It’s now all over, well at least for them it is!

But they have offered no relief to your pain, no offer of comfort or support or even a solution they simply presented an observation from a seat on their vantage point and all without knowing the real truth. They don’t see your restless nights, your battles with medication, a wardrobe of clothes that deny you access, those unfulfilling shopping trips or the pain and the heartache, no all they see is the image in front of them that doesn’t quite fit or meet with their approval.

They leave satisfied, as though they have righted some wrong, but in truth they have left you to pick up the pieces. When you stepped out of your house and put on the clothes that best fit you were feeling okay, in fact as you glanced at your image in the mirror as you left the house you were beginning to feel quite attractive and the extra pounds didn’t feel quite so heavy but that was this morning.

Now those heavy feelings are weighing you down and you could kick yourself for not having a witty or curt reply to stop those well wishers in their tracks; nothing to make them stop and think about that statement; nothing to make them understand just how destructive their words have been.

Yes you guessed it, I had a bit of a challenge with my weight today, actually it wasn’t so much with my weight, because I have been carrying that around for a while now courtesy of Prednisolone, but more with the people who felt they needed to remind me of it.

People can be so insensitive at times and I still don’t know how they can possibly think that they are helping. Do they think that some how I don’t know?

Seeing as I can’t do something immediately about this one I’m gonna go and drown my sorrows in a bowl of ice cream (I can’t allow a little weight thing to stop me from having a bit of fun) with homemade strawberry glaze (all natural of course) I’ll tackle this stuff tomorrow after all looking on the bright side it’s easier choosing what to wear now. It just has to be something that fits comfortably.

Thought for the day
Don’t judge a book by its cover sometimes the cover has nothing to do with the content

Next time you see someone who is ‘bigger’ than when you last saw them don’t shout it out. Chances are they already know.

Saturday, July 16, 2005

Who turned out the lights?

If you missed me yesterday that’s because I got lost in the darkness. Someone turned out the lights and I couldn’t find my way to put fingers to the key board but I’m here now.

It’s still dark in here, which is strange really because only a day or so ago my world was illuminated and full of bright colours. I loved the feeling it engendered, a warm and tingling sensation that radiated through my body, I was excited and everything really did seem possible (I even went on date, but that’s another story).That feels like such a long time ago, now it’s so completely different. I can feel an icy chill down my spine and everything has been painted black (no don’t get me wrong I like black, it just becomes a problem when that’s all you can see) the world just seems dark, dank and unfriendly.

I know that there is a light switch around here some where but I don’t seem to be able to find it and to be perfectly honest with you I’m not sure I even have the energy right now to look for it. And who turned out the lights? I know I am not alone; I can feel the presence of someone breathing down my neck. I can’t see him (I know he’s male) but I can feel his presence. I know that he’s there I know that it’s mr lupus and that he’s there wielding one of the many weapons in that arsenal of his.

Sometimes I think all he lives for is to reach into his bag of tricks and take out the first thing that comes to hand to damage, distort or maim. I wonder if this is how those wife swap parties work, (Why is it never husband swop?) I mean do you put your keys into a hat and then you take one out which indicates who you are going home with? (Does this really happen or is this me and my imagination or have I just been watching too much television again? Answers on a postcard please)

Darkness is an interesting tool which has been relegated to the basement of our lives. Good is always depicted as bright and cheerful whilst bad or evil is always dark and cheerless. This got me thinking. What is the purpose of darkness? (I believe that everything is here for purpose even if just to teach us something) and more importantly how can it work for me instead of against me as I move along this road to wellness (and I am moving)

I started thinking, is it possible that darkness is not really my enemy? Is there any way darkness could actually become my friend? (I really need it to be friendly to me right now)

Maybe darkness is as bad as we have made it out to be. Okay that’s not exactly how I am feeling at the moment but I’m a believer so work with me on this one. I believe that there is something more to darkness than we have acknowledged and maybe something that we can work with after all think about this:

• It is always darkest before the dawn
• A diamond is encased in darkness before it is revered by the world
• Light would not exist without darkness
• God created the world out of darkness. (Even if you believe that the bible is just a story that is how the author chose to tell it.)
• Darkness cannot exist without light. Without the light how would you know it was dark?

All of this suggests that darkness exists so that something more powerful can come out of it. By this definition darkness acts as a form of incubator, harboring and nurturing the goodness that is waiting to come forth. I think I can get through this darkness as I know the lights will soon be switched on.

Thought for the day
Sometimes what/who you thought was your enemy is often a friend in disguise.

Thursday, July 14, 2005

Just wanted to share!

It was a bit of a strange day for me yesterday. In one sense I felt full of the joys of summer and that was great because the sun was actually shining but I was still aware that things weren't quite as good as I would have liked them to be and that mr lupus was looking over my shoulder. I guess it was a bit like being in the twilight zone (did you ever watch that on TV) here but really some where else. Do you ever get that feeling? Please tell me yes or I'm going to begin to believe that I am alone on this one.

On a brighter note, one of the things that is happening to me on this journey is that I am connecting with people I probably would never have met but more importantly I am connecting with them on a deeper level. Superficiality seems to have left the building and the only thing left is to be real about feelings, thoughts and emotions (I never thought I would hear myself say that) but it is somehow liberating and soul searching all at th same time. Don't get me wrong, I still have fears and obstacles to overcome but I guess I'm not so hung up about them any more and I am just taking them all in my stride and I'd like to encourage you to do the same. Tomorrow really isn't promised so this is all you got make the most of it. I know I'm trying my best to maximise the moment, so please join me.

Thought for the day
If your nose is blocked, you get a tissue and you clear it this should be the same with your thoughts and emotions if something is in there you need to let it out. (why not start your own blog) A friend sent me these few lines and I thought it particularly poignant to share with you

guided by unbelievable beliefs
faced with a surreal reality
I reposition my position
with irregular regularity

Wishing you a blessed one.

Wednesday, July 13, 2005

I got the power!

The question that has been burning in my mind over the last couple of days is How come none of the things from the original Star Trek have come true yet? (It’s amazing what you think about when you have time on your hands) I’m not a Treky or anything like that (I did however have a friend who used to go to conventions dressed up in the crew uniform. I think that she was lieutenant Uhuru, yes I wondered about her too) but with all of the advances of technology you would have thought we would be able to teletransport ourselves from one place to another by now not being troubled by the cancellation of trains, the congestion charge in London or the daily traffic jams.

But more importantly to me and my battle with mr lupus is the fact that we still can’t tell a person’s condition simply by running a scanner over the body or infected area. I mean I still can’t quite understand why they still need to pierce the skin and my skin in particular to take blood.

I really do dread those piercing moments particularly as I now have to have blood taken every two weeks I know that diabetics and patients with other conditions are plagued with this on a more regular basis and I should give thanks but that doesn’t help me right now cos in my hole (and it is a hole), it is deep and so dark that sometimes that I can’t even get a mobile phone signal so once a fortnight really is a big deal for me.

I don’t like needles and it doesn’t matter how often I get it done it still hurts and takes a long time (well it seems like a long time) I’ve just recalculated and it’s more than every fortnight; there’s pre chemo blood; post chemo blood and regular rheumatology blood tests which means that I actually only get one week off in three and some weeks I have to have it done twice not at all my idea of fun.

It means that my social calendar is full, full of different types of hospital appointments I probably wouldn’t see my boyfriend that much (but then I don’t have one of those but that’s another story) interestingly the team of rheumatologists at the hospital know my name and my case history. How about that for making friends in high places. I guess they even they must be talking about mr lupus in the canteen.

One thing I have found to be helpful with the whole blood taking thing is not to look at it as it is leaving my body, to visualize being some place else doing something completely different and also to take deep breaths.

I think the Bible is a great illustration of the power of breath. Even if you think that the Bible is nothing more than a series of elaborate stories think about this. In Genesis the first chapter of the Bible, God created heaven and earth by simply saying let there be but when it came to man he used breath to bring him into existence. “And the LORD God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living soul.”

Seeing as man was created to rule (work with me here) and have dominion it stands to reason that breath must be a really powerful source, so wouldn’t it be good if we could use it effectively. Breathing is probably one of the most powerful weapons we have against a whole range of things and at a time when we are programmed to consume isn’t it refreshing to know that there is something at your disposal that is free. I don’t know about you but I’m always up for a bit of freeness particularly if it is going to do me good.

So many of us take breathing for granted, after all we do it as a matter of course everyday without thinking about it but are we using it to our best advantage? Strange question after all how many ways can there be to do it? The answer is, there are a number of ways but perhaps one of the most beneficial is deep breathing.

Deep breathing is one of the most overlooked and under-used techniques, yet it is one of the oldest methods of reducing stress and its side effects: headaches, tense muscles, rapid pulse, elevated heart rate, knots in the stomach, colds, outbursts of anger etc. The list is endless.

Deep breathing can and will restore balance to the physical and emotional body. It brings much needed oxygen to the blood and, in turn, to the brain which then sends a message to the body of "all is well." (And that is the message we all want to hear) The body automatically relaxes as well as the emotions that went along with the stressful event.
Deep breathing is a tool you carry with you. The next time someone cuts you off in traffic, take a long, deep breath and watch your body return to a normal, healthy state. Learning how to deep breathe takes practice just like the development of any other skill. The practice periods, however, are very short try 6-10 minutes a day.

Tips to using breath as your personal weapon

Find a quiet space; sit with up right with your feet firmly placed on the floor. Close your eyes and take a deep breath feel the oxygen as it fills your lungs. Hold it for 10 seconds. Do this exercise for 6 to 10 minutes each day or anytime you fill anxious

Join a yoga class. In Yoga there is a saying when you can control your breath, you can control everything.

Thought for the day
You have all the tools you need to live a productive life

Tuesday, July 12, 2005

How important are you?

mr lupus has a lot to answer for, there has been so much stuff happening in my life. My life as I know it has changed and is still changing. Each day brings a new challenge to overcome and the need to find a new coping mechanism but in spite of it all the ups and downs I have gained a new insight, a new clarity I guess it’s a bit like a detox or how I expect the colonic irrigation thing would work where that green gunk is removed from your system and you have to deal with the awful results before you see a new and improved you. It’s been painful and smelly, who am I kidding, it’s still painful and smelly.

But I can say that I now know what emotions are all about (well almost). I’ve been crying from a different part of my being, probably more of a spiritual catharsis, giving a new kind of clarity where everything really is simple and we are the ones that make it complicated. I think it’s when we add too much choice into things that it all gets complicated. Limit the choice and it’s all simple.

I’ve also discovered the meaning of revelation. It is not a bolt out of the blue as I thought it’s a slow process, it’s exposure, a new discovery and I don’t think you ever get fully revealed to you’re just open to another discovery another revelation, it’s often hard to explain, like that light bulb or ah ha moment, but somehow it is surprisingly simple, healing, and healthy.

Have you ever stopped to ask yourself "how important am I really in the scheme of things?"

I’ve going to let you into a secret the answer is ‘not very I’m afraid’ sorry. I think even I got caught up in my own self importance but I had a very abrupt awaking recently, well it was a bit like being slapped in the face with a wet smelly fish not that I have ever been slapped by a smelly fish but I think that would be an extremely unpleasant experience.

During one of mr lupus’ particularly testing times, I stayed a few days in hospital and whilst I was there one of the patients died. She had cancer and her relatives were expecting her to die but somehow expecting it doesn’t ever really prepare you for it or for what is going to come afterwards. The relatives kept vigil day and night to ensure that their loved one was not alone as she passed from this world to the next and then it happened, she died. It still hit them for six and they were uncontrollable with grief. The relatives filed through the ward saying goodbye to patients thanking doctors and closed the door on another chapter in their lives. I went to the toilet and looked across at the drawn curtains with a sadness in my heart how come we were at an advanced age and we still had no power to change this outcome? Guess we’re not supposed to!

I went to bed that night thinking about the revolving door of life and giving thanks for another day and vowing to make the most of the next. (funny how we always make promises at times like this) When I woke up the next morning the ward was the same, I sauntered down to the toilet with sleep still in my eyes and looked at the across at the bed only to find that there was already someone occupying the space, someone oblivious to the previous day’s activities.

Life really does just go rolling on, don’t get me wrong that really is a good thing, but don’t you wish just once that it would stop and make a courtesy call to say hi to you and acknowledge the way you feel, or maybe that’s just me, although I don’t really think that I am alone on this one.

Thought for today
Life is a journey not a destination. Make your journey count.

Monday, July 11, 2005

I'm just visiting!

It’s a Sunday afternoon in July, the sun is blazing outside and here I am laying on a gurney in casualty, not really my idea of fun and definitely no way to top up my tan. I woke up this morning to find mr lupus towering over me. The pains in my right leg from yesterday haven’t subsided, in fact my left leg has now joined in. (Giving a whole new meaning to joined up working), so the only thing I could do was to go and talk to someone that would understand. The trouble is the understanding folks are situated within the confines of a medical institution and these days visiting usually means taking my toothbrush.

I’ve watched a range of different hospital programmes and there is always some handsome doctor or male nurse who makes the experience or at least the scenery more interesting and bearable but if you shared that belief with me I am sorry to be the bearer of bad news, I have to tell you that this theory is simply not true. No handsome doctor has come to take my heart beat, although I did see a not too bad looking phlebotomist.

They’ve got me in one of those hospital gowns, you know the one with an open back exposing your bits, not at all a fashion statement although it does co-ordinate with my choice of underwear.

But on the plus side it’s a great time to catch up on my reading. ‘Living your best life’ (isn’t this what we should all be doing) is a book that I have been trying to read for the longest time as I am supposed to write a book review for a course I’ve been taking. And now that I am lying here with the uninspiring blue walls and drab curtain drawn around me, it has my undivided attention.

I came across an interesting statement ‘never stop moving forward’ which made me think about my situation and then about life in general. Sounds like an obvious statement doesn’t it; in life is there really any other way to move? Of course not, so why is it then that many of us are still trying our hardest to move backwards? Think about it, how much of your past is inhabiting your present and therefore setting down roots for your future?

We all do it think about the mistakes, bad relationships etc. that are still haunting you. It’s not them but you that is holding you back. Let go of the heartache and the pain and think of your life as an album of memories. When you create a photo album you only put in it pictures of things you want to remember, happy memories so only take from your past the lessons you have learnt that will help to move you forward.

And the great news about me is that after 7 hours of blood tests, blood pressure readings, scans, x-rays and terrible hospital food they have allowed me to go home as long as I promise to take more drugs and to come back to see them. I realize that when you’re eager to go home you will quite literally promise anything.

Am I living my best life? Not yet but I am on my way.

Thought for the day

You are not a product of your past and are therefore not destined to relive it. You have the power to create a new future.

Sunday, July 10, 2005

I've made up my mind that's what I want!

Another day managing life with mr lupus. I must say there are times when he really gets on my nerves (well that’s most of the time) and today he is up to his tricks again. As we speak he is caressing my leg and thigh muscles, not the tender touch of someone who cares, on the contrary he is simply taking advantage of my current vulnerabilities (I’m tired, it’s been a long day) but that’s okay I am going to put paid to his antics. I am beginning to get the hang of the sleep thing so I am simply going to go to sleep.

But before I go….

The drugs I’m taking (in fact drugs in general) bring with it a long list of side effects, add to that the effect of mr Lupus and you have a whole list of unpleasantries. In fact my doctor tells me not to read the drug information leaflets, I think she believes that if I read them fully I wouldn’t take the drugs. I can’t imagine why she would think that!

Sometimes though you have to ask yourself which is more preferable the side effects or the condition. I’m still not sure which side of the fence I am on with this one.

In the meantime I’ve decided which one I want, I mean if I am going to have the side effects it would be so much better to have ones that I actually like and ones which would be useful in the wider scheme of things. That’s why I have opted for weight loss. Well according to experts there is the possibility of unexplained weight loss with mr lupus and chemo seems to be a bit of an appetite suppressant so I should be well on the road.

I can visualize it now. The sun is shining gently massaging my skin, as the wind blows softly through my hair. My ears and nose tingle to the smells and sounds of my natural surroundings. All of this set against the backdrop of a bright and colourful sky. I am sitting confidently on the edge of the jetty elegantly clothed in three quarter length white linen pants and short strappy summer top, dangling my well manicured feet into the cool water below, as I look out to sea I hold up a long glass of a thirst quenching tropical cocktail (non alcoholic of course) in hand and give thanks.

So having made up my mind there should be no problem with the loss side of things right? Wrong, I am currently overweight and 8lbs larger than I was two weeks ago? What’s wrong with my theory? Okay I probably need to rethink the equation I obviously didn’t factor in the Prednisolone (which incidentally I have to keep on taking. But that’s okay I’m a fighter so I’ll just have to take matters into my own hands and exercise. Now that’s a whole new ball game and another story but we I’ll save that for another time. In the meantime I’ll just settle for the concept as I have a vision of sun, sea and relaxation to preserve.

Thought for the day

Create a vision of yourself beyond where you are now and use that as your chosen destination. It is always easier to plan a journey when you can see where you are going

Saturday, July 09, 2005

I'm still waiting!

If you stopped by yesterday, I'm sorry to have missed you. I had one of those strange days and I couldn't seem to get it together. It felt like being a dark place without a light in sight and what was worst I couldn't get a signal on the mobile. But that was yesterday......

Just when I thought that mr lupus had taken a sabbatical, my visit to the hospital changed all of that. What is it with hospitals and doctors aren’t you supposed to feel better after you’ve visited them. Well I definitely didn’t today. Just when I thought I could say goodbye to Prednisolone the dosage is up again and guess what they now want to introduce another drug to regulate my blood pressure. I’ve always wonderered about that one, if you take tablets to regulate your blood pressure how do you ever know if your pressure is normal on its own? Anyway the upshot of it all is that mr lupus has definitely not left the building.

Well that’s my rant over.

The question I really want to ask is about waiting rooms. Why do people in waiting rooms go to painful lengths to ignore each other? Have you noticed that when you sit in a waiting room whether it is the hospital, train station, bus stop etc. everyone tries to pretend that they haven’t seen each other. There is very little eye contact and few people engage in smiles or friendly chatter, strange really because at that particular moment in time we have more in common and are more connected than most. One common purpose and goal, wouldn’t you like to have that in your current relationships?

I go to the same clinic once a month as so do a lot of the people warming the chairs around me but do we strike up conversation no we simply sit around for what is sometimes hours trying to pretend that we are the only one there. Or we busy ourselves reading out of date, no interest magazines. Why am I turning the pages of Motor Cycle Monthly? It’s obvious so that I can avoid striking up a conversation with the person next to me. How bizarre is that.

Do we somehow think that whatever that person has could be transmitted through a smile or an exchange of pleasantries? Is there some unwritten waiting room code that says thou shalt not talk to or smile with anyone least you catch something? Or maybe it’s the fault of the hospital they don’t create an environment conducive enough to striking up new friendships!

Yes that has to be it. We can’t possibly be at fault!

But imagine this. You arrive at your chosen waiting area (hospital, doctors, train station, bus stop) and are greeted by someone who seems genuinely pleased to see you. The air is permeated with a sweet relaxing fragrance and soft mood enhancing music is playing softly in the back ground caressing your earlobes. You are shown to your seat and introduced the people around you. You are offered light refreshments and an array of up-to-date magazines/newspapers and as you wait for your train, bus, doctor or specialist you blissfully engage in meaningful conversation with your new found friends.

Okay a girl can dream. Maybe the next time I am in the hospital or my doctor’s waiting room (and we know that is very soon) I will turn it into an warm place to be by sharing a smile with someone and by striking up a conversation with the person next to me.

Thought for the day
Don’t leave it to other people to create the world you want to live in. Change your world one day at a time

Thursday, July 07, 2005

Desperately seeking hugs!

Apologies for the delay in today’s post. The activity of yesterday simply caught up with me and I couldn’t keep my eyes open (great sleep is seeking me out)

I slept for a short time yesterday or perhaps it is better described as a nap but whatever it was the significant thing is that this time it was on a couch other than my own. Yes I managed to extricate (I like the way that word sounds) myself away from the comfort of the living room and daytime TV (I do however confess to watching Diagnosis Murder but that was when I came back in so maybe that doesn’t count) and leave the house.

This power nap took place on the couch of my therapist. That sounds so American where everybody who’s anybody from 0 to 90 has one. No I am not having my head examined although I can see the merit of that. I did have an MRI scan of my head and brain recently and they didn’t find anything. I’m still not sure if that diagnosis is a cause for concern  my therapist is a Reiki practitioner amongst other things.
Just in case your knowledge of Reiki is as deep as mine was before I had my first session here is a short explanation. Reiki practitioners channel energy in a particular pattern to heal and harmonize. Unlike other healing therapies based on the premise of a human energy field, Reiki seeks to restore order to the body whose vital energy has become unbalanced. The healer places the hands above the recipient and it is the recipient that draws the energy as needed. Reiki energy has several basic effects: it brings about deep relaxation, destroys energy blockages, detoxifies the system, provides new vitality in the form of healing universal life energy, and increases the vibrational frequency of the body.

This was only my second session but it really relaxed me and if putting my charkas (the body’s energy centers) in alignment can do that then I just need to do this aligning thing more often. My session took about three hours in total (I’m not sure that it is supposed to take that long) but then I’ve got a lot to say and talking is always part of my treatment.

My therapist is a very warm and generous person and she always gives me a hug when we meet and when we say goodbye. Not one of the cold unfriendly kinds, a warm and generous bear hug. I love hugs; there is something about them that leave me with a sense of being loved, feeling connected and a general air of happiness. Now you’d think if something is this good that they would have found a way to bottle it by now. After all a hug (if administered sincerely) is free from additives, it’s organic, it can be obtained from anywhere, it creates and supports relationships, it creates a win-win situation, it has no negative side effects, it does not discriminate, no one has died from it and it’s free. I guess that’s why they haven’t there’s no money in it.

So that got me thinking. In a society plagued by ills and disease, why don’t we as individuals take advantage of this free panacea? I’m not sure about the answer to that one, maybe it’s we are just too busy pursuing individual lives to stop for hugs. Make my day and give me a hug

give Carole more *HUGS*

I did some research into the benefits of hugging. According to Paddy Kutz, US Mental Health Association “hugging is a miracle "medicine" that can relieve many physical and emotional problems. Researchers suggest that hugging should be a part of treatment for pain. They have also discovered that hugging can help you live longer, protect you against illness, ease the symptoms of depression and stress, strengthen family relationships and even help you sleep better.”

And all of this for free.

I can picture it now every time I get a hug it’s a slap in the face for mr lupus, and a hug before bedtime…the possibilities are endless, how can I possibly resist that?

So I’ve decided I need hugging on a regular basis and I don’t care who knows it. In fact the more people who know it, the more hugs I’m likely to get. When last were you properly hugged? If you have to think about it then it was too long, so I’m writing you a prescription for one good hug a day. This can be taken at anytime of day, with or without food, but must be taken regularly. If you miss a dose, it’s okay to take a double dose the next time.

Suggestions to get you on the road to hugging.

Ask for a hug. You will know who to ask by your interaction with them. Listen to that inner voice

Treat a hug as just that it does not have to lead to anything else

Same sex hugging is okay

Learn to hug yourself for those times when you are on your own and a hug is all you need

Start a hugging chain with your family and friends. If it makes you feel good then chances are it will make them feel good too

If you don’t like physical contact ask yourself why and either introduce hugging slowly with a supportive friend or find your own version of hugging. Whatever way you chose remember the benefits out way any negatives.

Thought for the day
Four hugs a day will keep the doctor at bay

Wednesday, July 06, 2005

Bitter isn't always bad for you!

Another day of relative freedom from mr lupus, although I did succumb a little to his advances in the afternoon when my body decided that all that high energy stuff was a bit much and it really needed to get some more rest. But that’s okay I found the best solution, an afternoon spent in the comfort of my ‘office’, yes I took up my position in (or rather on) my favourite place, the couch in the front of the TV (just in case you didn’t know).

I think I’m beginning to give a whole new meaning to the term ‘couch’ potato’. But I mustn’t forget that I did have two consecutive days of energy so I can’t really complain and before I get too overwhelmed by it all I’ll just go back to living in the moment and in this moment I just need a top up of energy. That’s simple and uncomplicated, in fact life is probably just as simple but it’s us who make it complicated.

Could it be that life really is black and white with the grey bit in the middle being stuff that we create or that has been created for us? I mean when I wake up in the morning I only really have two choices, I either get up or I don’t, black and white simple. But then if I add thinking to the equation, what am I going to do when I get up, how am I feeling, what is the day going to be like etc… then the whole process takes a lot longer and that’s when it all starts to get complicated. Does this apply to you in anyway? Like for instance when someone asks you a question is that nice? And instead of saying yes or no you go into the history of how and why it got here. Isn’t that just complicating things and taking up time? Say yes or no and then move on. Think about how much more you could accomplish each day if you only cut out the fluff.

Well here I am moving along this road to wellness just itching to ditch all of that complicated stuff (and mr lupus of course)….

I guess it’s a bit like the annual spring clean or that all important detox where you purge and cleanse (isn’t that the same thing?) to refresh and make room for something new. That reminds me of when I was a child during school holidays it was always time for a ‘washout’ mum would boil stuff that smelt foul and had the same taste to compliment it. Dad’s favorite (I’m still wondering about him) was roast orange and cod liver oil (yes it tastes just like it sounds) I hated this ritual and couldn’t for the life of me understand how digesting that liquid and spending days on the toilet could ever do me good. It just shows you how much we know. We should really pay more attention to what our parents say as that kind of remedy has simply been repackaged (the wonders of marketing) and is now costing us a small fortune. I’m sure if I’d kept up the practice it would have done me the world of good, but they always say that hindsight is a luxury don’t they?

Here’s a question for you who exactly is they? We use that term often but is there really a discernable they?

I must say I like the idea of purging and cleansing because after I have kicked mr lupus to the curve I want to be standing in the renewed and recharged me (which is at least two stone lighter) without any of that old stuff messing things up.

Thought for the day
Just because it leaves a bitter taste in your mouth does not mean that it’s not good for you.

Tuesday, July 05, 2005

Can you dance?

I did it I went another 24hrs without watching TV and I’ve only broken out in cold sweats once today :-)

Today was a good day, particularly since mr lupus left me completely alone to my own devices. It was just a shame that the sun didn’t stay around long enough to help me celebrate. A whole day with no fatigue, no pain, no feeling of unwellness and no lethargy now I could get used to that even though I did keep looking over my shoulder half expecting mr lupus to show up and shout ‘surprise’

I am, however, learning more and more each day how to live in the moment, taking each moment as it comes and worrying less about the previous moment or the one that lies ahead of me. That really is an art form (they should teach classes on it) that will probably always be a work in progress as we seem to have been trained to worry (I know that’s not just me). We worry about what happened, what didn’t happen and what could happen, which begs the question when do we really have the time to live in the present.

Have you ever asked yourself the question what is a worry? After all you can’t see it or touch it but you always feel the impact of its presence, a bit like God but different. The dictionary suggests lots of meanings but I like this one to pull or tear at something with or as if with the teeth, I have no idea what that means but it’s quite dramatic.

Worry, who lives comfortably on Fear Street, is an uneasy feeling or concern about something and let’s face it with a chronic condition that is active there are a lot of fears in operation. Have you stopped to think about yours?

To help put you at ease I’m gonna share with you my fears (well perhaps not all of them. I’ll just focus on the ones that are manifesting themselves as a result of mr lupus). Oh but before I do that let’s get clear on what fear means. Fear = False Expectations Appearing Real. Think about it we are living life based on what could happen and not what is actually happening. In fact we are more interested in the meaning, label and interpretation of what happened rather than getting the most out of what we are currently experiencing.

Now you’re probably thinking that I have totally lost the plot which you could be right about as my mind is not currently what it used to be (which could be a good or a bad thing) but even if this is what you are thinking stay with me on this one because truly living in the moment depends on it.

If worry keeps us troubled and chained to things we cannot control and Fear keeps us moving along a road where our worst nightmares are coming true no wonder we are feeling challenged. There has to be a way to break free from these shackles and that has to be about living in the here and now. That reminds me of a song by Mary Mary called surprisingly enough ‘Shackles’ and the line that immediately springs to mind is Take the shackles off my feet so I can dance…
Maybe that’s it. We are all supposed to dance our way through life and that could be anything from ballet to the waltz and everything in between. So maybe that’s what living in the moment is all about being FREE to dance, to dance with gay abandon, without a care in the world and totally oblivious to what other people are doing or thinking. And maybe just maybe that freedom has nothing to do with mr lupus and so much more to do with choosing to live in the moment.

Oh yea my worries, I’ve forgotten what they are because for me, right now in my moment I am enjoying my life.

Thought for the day
Live the moment and dance like no ones watching

Monday, July 04, 2005

I'm not addicted!

I have been almost 24hrs without TV, I’d break out the champagne but I don’t know how that would interact with my drug regime so I’ll settle for a glass of icy, but not too cold water instead. (I really know how to celebrate these days) Just in case you were wondering my break from TV really had nothing to do with the fact that I couldn’t get a Sky signal (okay may be a little but I was looking for a break away and this is not an addiction!

I tried my friend’s sister’s advice about the sleep thing last night/this morning but I don’t think it worked but then again….

I’ve sussed out what this sleep problem is all about Prednisolne is giving me a high, Chemo is making me tired and mr lupus is adding fatigue to the melting pot of confusion no wonder I can’t sleep I’m wired all wrong. I even tried sleeping tablets, well it was a very small tablet, once, but that was enough. It worked, I fell asleep comfortably which was great only a slight problem. The following day I was awoken by the postman only to find that although my eyes were awake, I was still asleep, so much so that I was unable to do anything for more than 30 minutes at a time for the next two and a half days. Needless to say I have not done that again and have no plans for a repeat performance anytime soon.

I’m holding on to that small glimmer, albeit a pin prick, of light that when the steroids are over I won’t have this problem. I’m pleased to announce that I am taking the Prednisolne now in ever decreasing circles so I should be off them soon well what’s the point of going through the whole chemo thing if I still have to take high dosages of steroids. In fact I’m still trying to work out the first part what’s the point?

I realised today that we are totally ignorant patients (I know I can’t be the only one) I know a lot of information as it pertains to mr lupus, the symptoms, diagnosis, treatment etc. but I know very little about mr lupus and me. I have spent so much time focussing on what the advances of mr lupus that I have lost sight of me in the process. What do I mean well when I was lying in a hospital bed and they told me they were going to administer chemo that afternoon it came as a total bolt out of the blue I’d always associated chemo with cancer and the fact that my mother died from breast cancer really didn’t help matters but I had an hour (which translated into about 30 minutes) to digest what they were telling me and then make a decision. When I was younger I had a key ring that read 'I used to be undecided but now I am not so sure', so you can imagine my decision making process with this one.

On a sunny Tuesday afternoon, I was simply told the choice is lupus or chemo which one do you want. What a choice to make particularly given that mr lupus was successfully attacking the nerves in my legs which if not treated could result in permanent loss of movement in my legs. So I agreed to a course of action that has much wider ramifications without any real consultation, support or advice and I’ve realised that a lot of our medical decisions are made in this way. So again I have a choice and you do too. I have decided that I need to be an expert patient, asking the questions and getting answers as to how all of this relates to me both in terms of where I am right now and where I want to be. I’ve got a hospital appointment this week so that’s where I am going to start.

Thought for the day
Understand the power of choice in your life and learn how to exercise those choices effectively.

Sunday, July 03, 2005

The Power of Inter-dependence

All that activity of yesterday caught up with me today and I actually got some deep sleep, well a range of short naps but it felt good and recharged me enough to do things in-between. And this time I did move from the comfort of my settee.

I got some advice from my friend’s sister over the whole sleeping thing. She assures me that this works for her. Close eyes, say you want to go to sleep and then don’t open eyes until you do. I’m not convinced but maybe I’ll give it try.

TV, apparently aware of my current disgust with them, treated me to a marathon session (12hrs) of my favourite programme, Diagnosis Murder (DM) starting at 6am (guess what I was awake) If you are unfamiliar with Diagnosis Murder, here is a brief synopsis. It is a kind of detective/medical drama where Dick Van Dyke and his son (whose name I can’t remember) play a doctor/detective and…okay you probably don’t really care and I’m not sure my description would do it any justice anyway so perhaps we’ll skip the synopsis. Needless to say I’ve watched a lot of it.

Don’t look at me like that, it’s not that I am addicted to it, it’s just that for those two hours a day Monday to Friday and then this marathon session I am simply continuing my research (but then you knew that already)

I did manage to break the day up though, I also watched the Wimbledon final, Charmed, Will and Grace and aspects of Live8, well I wasn’t going to move too far from the settee was I?

I think mr lupus went out for a bit today and left me to my own devices because after each sleep, I felt a bit better. I know he’s coming back though because he left his torture equipment. But I didn’t focus on that; I used my time apart from him wisely. I even got a visit from hunky Will Smith, of Men in Black fame, (okay he came to me via satellite from Philadelphia courtesy of Live8 but he was still talking to me and he was in my living room.)

I can testify that he really does get better with age; he really has grown into all man! (Oops sorry I’m getting carried away, where was I, oh yea our conversation). He said a range of things but what struck me most about our conversation (yea I was talking to him too, what of it?) was the reference he made to the fact that America is celebrating Independence Day this weekend. He suggested at this time instead of focusing on independence it was time for us to be inter-dependent. With an African child dying every three seconds it is our responsibility because we are all in this together.

Wow that was deep, but doesn’t make you think about your life and where you are at? I know for me I am battling with the whole asking for help and support thing. I used to believe that strength lay in being able to do it for yourself but I have discovered that a stronger person is someone who can admit they cannot do it all themselves and happily asks for help when they need it. My superwoman days are over, I have burned the outfits and recognise that the only thing we really have in common is gender (it’s still a work in progress.

Thought for the day
Ditch what ever independent front you are operating behind and recognise that we are all an important link in the cosmic chain of life and only together can we really make a difference. What's more the power lies in the connection between the links in the chain

Saturday, July 02, 2005

At the Club

Yesterday was spent at Club Duvet. (It’s an exclusive club so, if you ever need to get on the guest list let me know and I’ll put in a good word for you as I’m a regular there).

Don’t think that I have been idly spending my time lying around on the settee all day; on the contrary, I’ve been working diligently. I am gainfully employed as a communication strategist (I’m sure that there is money in that) now qualified to provide expert comment on the quality of soap scripts, the length and type of adverts between programmes and the general quality of daytime TV. In fact I have firmly set up office in the living room with a big beige leather settee as my desk (does anyone know how to get ink stains out of leather). All in all not a bad set up.

My current project is in answer to the following research question ‘just how much daytime TV can a person watch in any one day without going mad’. I’ll keep you posted on the answer to that one. Well that sounds a whole lot better than telling you I have been just lying around watching TV and who knows I may actually write a research paper.

But it wasn’t all work today; I did manage to entertain a lunchtime guest, well entertain is probably not quite the word as they came with lunch and I kept them company trying not to doze off, that seems to be the level of my entertaining these days, so if you are looking for something more than that then maybe now is not quite the right time to stop by.

My thoughts today flitted from one thing to another but mostly centered on searching for an answer to the meaning of life well not the whole universe thing but my life. In particular what is it all about? But perhaps more importantly what do I want it to be about? Deep I know, but I guess that’s what you get from lying around all day.

It’s the weekend which in someone else’s world probably means something special. To me it’s just another two days, so I think I am going to get out and about and try to enjoy them after all a bit of fresh air is bound to be good for me.

Thought for the day
Tomorrow never comes, yesterday died last night so today is a gift and that’s why they call it the present. Live in the moment you have earned the right.

Friday, July 01, 2005

Not quite the all night party!

Here’s a question for you, what do you do when you are wide awake and the rest of the world is sound asleep?

Although I’ve had lots of practice with this one, I still don’t really have a clue but I have tried all kinds of options, from clearing the clutter and trying on clothes in my wardrobe I can't believe I bought that dress) to exploring the treasures of cyber space (it’s amazing how much you can buy on ebay, even though I’m not sure what I’ll be using that gadget for)and running up the phone bill calling overseas.

I’m running a bit late today but that’s not really surprising as I’ve been up for nearly 24hrs now. Most of which I’ve been trying to ward off mr lupus who is again trying to get my sole attention, which becomes particularly easy in the wee hours of the morning when my defenses are down. I'm exhausted but I've still got my fighting spirit so the battle is not over yet!

Funny at times like this it becomes blatantly clear just how bad TV really is. With a world of channels at my disposal, I still can’t find anything entertaining to watch at 3am. (Educational or informational would really be too much at this time of the day)

Maybe I’ll go in for some kind of record, which would be great if this was an all night party or rave (I can’t remember when last I did that one but who knows) but it’s not it’s just another stop on my road to wellness, but I mustn’t complain. This probably isn’t such a bad thing as another stop on the road has to mean that I am definitely moving.

Hooray, the intrepid explorer is on the move.

I’ve realized that as long as you keep moving you start to gather momentum which will be able to carry you through when you don’t have the energy (well that’s the theory anyway)

Thought for the day
I don’t really have one or maybe I have several I’m not really sure but that’s okay I have an excuse more thoughts tomorrow.