Tuesday, November 17, 2009

Let's get technical.

I have to admit the terrain over the last 12 months have been challenging to say the least but I have come to a decision. It has been a long and painful one where plenty of blood and tears have been shed on the battle field but I am happy with my decision. If mr lupus is going to continue to be such a 'humongous' part of my life it was time he went to work. So I have decided that instead of allowing mr lupus to control my life I am going to use him to improve my life and the life of others.

I'm not sure exactly what that means yet but I do know that just the thought of it has made the days seem brighter. To this end we have a new look www.laughingwithmrlupus.com and if you are a follower, subscriber or just an interested party I urge you to go over and check it out and make sure you subscribe or resubscribe as the old links will no longer work.

I look forward to engaging with you and with you accompanying me on my journey.

Here's to a relatively pain free experience.

Sunday, May 10, 2009

mr lupus as a new home!

Laughing with mr lupus has moved to a new home. Check out the new look website www.laughingwithmrlupus.com.

I look forward to continuing to share with you.


World lupus day!

Today the whole world are joining together so we can make a ripple across the globe. It feels as though we should be observing a 1-minute silence or something like that in anticipation of his death (I’m referring to mr lupus of course). Yes that’s exactly what I want to do, so let’s do it!

Lupus pause

For the next minute or so, I want you to stop what you are doing and dream of a time when lupus will be a thing of the past, a time when men and women, young and old, black and white will not be subjected to the antics of mr lupus. A time when people like you and me, our families and friends, will feel free again to be and do all the things they want to whenever they want to. (This reminds me of Martin Luther King and the I have a Dream speech. Watch this space I may just write my own)

Okay, I realise that this may take a little longer than 1 minute so take whatever time you need and then get a glass of whatever your favourite tipple is (mine is sparkling mineral water with a slice of lemon) and join me in raising your glass in honour of the death of mr lupus.
For more information about ‘World lupus Day’ visit http://www.worldlupusday.org/

Monday, April 06, 2009

Another mr lupus production!

I’m sure this whole lymph node thing is a mr lupus production.

But sitting around waiting for something to happen or not is no fun at all and is almost worst than the pain itself but if it was anything serious they would have seen it by now wouldn’t they?
I am convinced that mr lupus clearly knows that there is nothing seriously wrong so to keep me occupied I now have another lump in the very area of the biopsy which we are not yet able to identify.

mr lupus really seems to be on a crusade this year. I have decided that it is a bit like being on a detox where all of the crap needs to come out before you can look and feel healthier.

So there you have it I am on a ‘lupus detox’, which means that when I come out of the other side I will be free from mr lupus and his antics.

Well that’s my theory and I am sticking to it

Saturday, April 04, 2009

And no George Clooney in sight!

How is it that after watching so many hospital dramas I have not been able to find one good looking, to die for (pardon my pun) doctor on all my trips and stays in hospital? (Answers on a postcard please)

The operating theatre was smaller than I had imagined, stark and white with a accent of silver. I imagined the operating table to be wider and the feel of the place to be less clinical.

The nurse was friendly and had warned me about the bright lights and all of the people who would be there. It seemed like the staff waiting room when there was nothing else going on they could come and hang out and watch. Definitely not for the feint hearted.

I couldn’t believe that I had actually consented. I knew that I had because they had twice checked my signature on the consent form but I was clearly under the influence why else would I have willingly done that. I had consented for them to cut my throat (okay my neck) whilst I was awake. That had to be utter madness, after all why would anybody in their right mind do that (which probably answers some of those other questions)

At least I wasn’t living in the days when there was sawdust of the floor and patients being instructed to bite down, but seriously cutting my neck whilst I’m awake. I don’t even like having blood taken and we know how often I have to do that. I was good, you would have been proud of me, although when the 10 minutes turned into 30 I was getting just a little agitated and any novel factor that existed had almost certainly worn off and I could swear that mr lupus was in the room laughing at my expense.

I had two surgeons, which they assured me it was because I was special (okay it might have been me who suggested that) and between the two of them they eventually managed to prise my lymph node from its depths.

This is where it all went pear shaped and I discovered just how insensitive doctors can be. I had focused so much on the operation that there had been little space in my mind for ‘the results’ and then one doctor casually said to another “it looks like *****” I didn’t hear the “*****” because I got stuck at the “it looks like...” and tears started to roll down my cheek. (Tears are amazing how do they know when to show up?)

I didn’t ask because I didn’t want to know but now as I wait for the results I’m not sure that was one of my better ideas.

Because of its size I was told I could give it a name, so Joey was introduced to me and the outside world before being sent off to explain himself to the experts.

Am I worried about the results, a little but then worry never got you anywhere did it?!

Thursday, April 02, 2009

Have you lost weight recently?

I was really excited the night I went to sleep and woke up a size thinner okay maybe it wasn’t quite an overnight thing but it sure felt that way. One day the clothes I was wearing as a result of the steroids clung snugly to my hips the next day they didn’t and I found I could step in and out of jeans without having to unzip them. How cool is that!!

Although there were still some ‘tummy’ issues I was excited as I could actually parade around, hold my stomach in and pretend I had a six pack and it became believable and people started to comment on my new look. I was even able to take things out of the jumble bag because they now fit me and then all of that turned sour by the uttering of one simple question:

“Have you lost weight recently?”

Now don’t get me wrong there is nothing wrong with the question, in fact I would happily answer “yes” to anyone who asked. The problem here was the source of the question; the way in which the question was uttered; the fact that it had been asked several times and always in response to pain and swollen lymph nodes which incidentally were not responding to the cocktail of drugs being administered and lastly the fact that as soon as I proudly said “yes” the questioner immediately bowed their head and started writing.

How could the joy of dropping a dress size suddenly become a sinister occurrence?

I had had an uneventful lupus few days was this one of his tricks to lull me into a false sense of security and then pounce or was it something more sinister and he had teamed up with one of his friends to whack me from behind and trip me up all designed to keep me under his thumb?

It definitely threw a spanner in the works but on Friday 13th (it’s okay I’m not superstitious) all would be revealed they were going to operate!

Monday, March 30, 2009

A stay in hospital has its good points!

As a single woman living alone, there are very few browny points when mr lupus comes to call so much so that I have to admit that my recent stay in hospital highlighted just what I have been missing (sad but true). Sitting alone on the settee, comforted by 24hr TV I realised that being in hospital, although it meant you were sick and liberty impaired also brought some perks:

  • Three meals a day. Okay there was no cordon bleur chef but it was hot and hand delivered
  • Fresh linen every morning
  • Drugs. You have 24hr access. Not that I'm a drug adddict (although mr lupus is working hard to make me that way) but it could be a perk
  • Clean clothes everyday. Okay the hospital fashion label may not be the best for your street cred but you're not going anywhere.
  • Transport to and from appointments. A very nice man wheeled me to my lung scan and inspite of looking a little the worst for wear he found me attractive.
  • A choice of being with people or being on your own in your own private space. Well curtains drawn around the bed is private isn't it)
  • Room service. At the touch of a button you have access to a team of people who are there to serve you.
When put like that maybe being in hospital is not that bad!

Okay I'm not advocating more stays in hospital just highlighting some of the benefits just in case you or I find ourselves there.

Here's to a pain free and hospital restricted 2009.

Tuesday, March 24, 2009

Surely I must be up or some kind of award!

Before the end of February I had been to casualty three times, visited my GP twice, met up with my rheumatologist and spent six days in hospital. I don’t know about you but if I had to schedule those times in my diary I wouldn’t have been able to do it. Not that I am in a competition with you or anything like that but I challenge you to beat that.

I wonder if there is a Guiness Book of Records opportunity here. Now don't get me wrong it's not that I am excited about this 'achievement' it's just that I believe that we need to make use of what we have in our hands. There has to be some benefits in it :-)

Apparently (just in case you didn't know) mr lupus is active and he seems to have plans!

I am grateful, however, that this month has so far been a quiet one apart from the bald patches and the biopsy (but that’s another story)

I think that I am still recovering from the lupus noise of previous months. But the great thing is the sun is shinning and it’s a wonderful day particularly as I have prised myself free from the settee and inspite of mr lupus chatter I’ve made it out of the house and into the real world where there are people around and he has to keep himself in check.

mr lupus eat your heart out because today I win!

Monday, March 16, 2009

I understand the power of a shower!

The white of the sides were dazzling and the water that moved between them was at first warm and soothing but then before she knew it, it was cold and uninviting and just as she thought it could not get worst she found herself in an awkward and uncomfortable situation and the stark reality hit her, she was alone and she couldn’t get out….

If this was the opening paragraph to a best selling thriller novel it would have you gripped and ready to read whatever came next. Unfortunately this is not the case it is the story of the day I decided to take a long soak in the bath and found that the combination of inflammation and reduced power meant that try as I might, I couldn’t get out. mr lupus had me in his grip and there was nothing I could do about it.

Armed only with a telephone, an iPod and my sense of humour, I realised that I would simply have to wait it out. mr lupus would have to let go of his grip eventually wouldn’t he?
Of course he would!

After what seemed like forever and several phone calls later I was finally able to wrestle myself out of his grip okay perhaps not wrestle exactly just get onto my knees and push myself to my feet and get myself out of the bath vowing to never return. Know I really understand the power of a shower!

I did however learn some lessons along the way:
  • Let the water out first, an empty bath is so much easier to manoeuvre in.

  • When mr lupus is on the attack and you are home alone having a bath is not the best decision to make.

  • Humour is a powerful weapon. My friend laughed all the way through my desperate phone call to her but fortunately for her I was laughing too.

  • Faith and hope are great friends to have along the way. I believed that I was going to get out…eventually.
mr lupus is really upping his game so I simply need to up my because I cannot let him win.

Tuesday, March 10, 2009

I've got lupus!

Okay that may not be a startling revelation as I have now been diagnosed with lupus since 2001 but today, in this place, right now I know that I have lupus and no amount of reframing and thinking positively is going to change this moment right now (the next moment will of course be different) and I have to admit that this is really difficult to get my head around.

As the harsh reality that 'de nile' is a river in Egypt (that joke is so much better when you say it) hits me it feels like being stuck in quick sand (not that I have ever been in quick sand, but I have seen the movies) where the more you wriggle the deeper you sink. I am sure that those are words from a song, hold on for a moment I'll check (Don't you just love the power of the internet). I was right, the words are from UB40 and Guilty. I bet you are happier now that you know that)

Where was I, oh yes, 'de nile' There is something so different from having mr lupus display random acts of 'kindness' to knowing that you are tied to him 24 hours a day 7 days a week. It'a bit like having a partner and you suddenly get to see his true colours and realise that you really don't like them.

lupus like any other label, not just illness, has a way of defining you (if you let it of course) and becomes the lens through which you see the world. I don't mind sharing with you how I have been feeling and a lesson that I learnt recently.

My fertile imagination had created a whole new world in my head, a world where mr lupus was king and living a rich and opulent lifestyle and I was his reluctant servant.

I could only see the things I couldn't do. I couldn't run, concentrate for long periods of time, walk long distances, sweep down the stairs, run the marathon etc. The last one jolted me into reality I had never wanted to run the marathon so the fact that I currently could not (and believe me I couldn't) really shouldn't have been a problem but there I was caught up in the web of his deceit and lies.

he was working overtime to plant serious doubts and exploit weaknesses in my mind and believe me he is good, he could win awards for his efforts.

I found that my value was linked to his antics and the harder he worked to challenge me the lower the price of shares in me became with no obvious way out of the slump.

And that is when it happened (well you know I couldn't stay there for too long). Like a bolt of lightening (well I needed something to rise out of the slump) out of the blue I had a brain wave (great to know that that part of me was unaffected by mr lupus' antics) all this focusing on the stuff that I couldn't do really was getting me nowhere and quickly.

I needed to find a lifeline and at that moment, I knew exactly what I needed to do. I simply needed to focus on all the things I could do. (Interesting how lying on the settee and flicking the channels suddenly becomes a skill.) and ask for help with the things I couldn’t. Well that last part is still a work in progress but at least I am on the road and what a great opportunity to learn a new skill.

Monday, March 09, 2009

The power of The Pred!

I'm sorry but I need to start this conversation by singing the praises of prednisolone. Yes you heard me right, I actually have some good things to say about steroids.

I know that Prednisolone has a bad rep and I, for one, have been waving that flag after all it gave me the familiar 'Moon Face', an excess of bodily flesh, euphoric highs and almighty lows but following 'Swollen Fingers; it also gave me a life line.

The very moment prednisolone entered my blood stream, my whole body seemed to jump for joy and get excited. In fact I could almost hear the third finger on my left hand squeal with delight as it recognised the familiar sensation trickle through my veins.

prednisolone actually helped me to feel better and to quite literally regain my grip on things and I have to admit I started to get cocky and I really believed that I had found the weapon I needed to fight mr lupus head to head.

Well I now know that at the first sign of prednisolone, all mr lupus did was withdraw for a little while to regroup and then come back with a vengence.

So there I was left hot (should have been cold but inflammation is a heat thing) and alone having to fend for myself against the evil of mr lupus.

Prednisolone is still on the menu but I will never trust it again because it chose to betray me and didn't live up to its promise!

I guess you could say I don't forgive easily, well I think I've got justification don't you? I've issued myself a challenge and I am going to work hard to achieve it. I will not get moon face and having lost weight I refuse to take it back so whilst it may be knocking vehemently at my door, I'm choosing not to open it!

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Swollen Fingers!

No, that is not the name of a new rock band, (wasn't there a band called Stiff Little Fingers or something similar) although I am sure it would go down a treat. I can see it now, a music venue full of screaming fans all ready for the band to perform their latest offering. 'No Grip' oops, there I go getting away where was I oh yes mr lupus.

So what exactly is Swollen Fingers?
It is in fact the new game mr lupus is playing with me and although it now seems to be a daily routine, I have no idea what the rules are or how exactly I am supposed to play it.

I tried to be really cool and sophisticated about it all allowing mr lupus to play his little game afterall I'm a big girl and I'm not phased by that kind of thing.

I've noticed one of the things about mr lupus is that when he is ready he becomes 'he who would not be ignored' and he continued to play his game until I had no choice but to take notice of him. It was then that I began to fully appreciate the role the third finger on my right hand played in my life. When last have you stopped to give it any kind of consideration?

Until that point, I never realised that finger was actually a star player, quietly bringing up the rear without conversation or complaint doind and supporting.

I am not ashamed to say I have found a new love and appreciation for my fingers and whilst there is no significant other in my life they are the current object for my affection.

So you see mr lupus I can still see the benefits in the challenges you throw my way.

Wednesday, January 21, 2009

My least favourite place in the world!

I just wanted to tell you about a recent visit to my least favourite place in the world. The reason I am sharing it with you is not because I want to promote it but because whilst it is my least favourite it can sometimes be useful and this is one occasion when this was definitely the case.

I would have let you know earlier but mr lupus was playing with my hands and the experience was such an amazing one that I couldn't really focus on anything else. It was something that I had never felt before (and to be perfectly honest will be quite happy if I never feel it again).

I was also disappointed that I managed to fall at the first hurdle with one of my major 'resolutions' for 2009. Having discovered that the power of asking for what you want is more likely to help you get it (providing you are not being selfish of course) I promised myself that I was going to exercise my right to 'ASK' in 2009 on the belief that the universe and everyone in it is willing to help and answer my call!

And then it happened.
I woke up and realised that things were not quite as they should be. My hands refused to comply, my balance was a bit off and the dreaded pains in my legs were my morning companion. I am not sure whether it was at this point that I thought I should visit 'that place' or whether the effort to squeeze toothpaste or turn on the tap alerted me to the fact that my body was not quite operating as it should.

Now you'd think that all of this would be pretty straight forward, I'm not doing too good, I need some help and I know where to go and get it but due to the 'hand' challenges driving was out of the question, (although it did cross my mind) but still I didn't ask.

I cancelled a workshop that I was doing that day for obvious reasons, made a call to a friend on the same road but on no answer I left a rather jovial message on the machine and carried on with my morning (albeit slowly) as though there was nothing wrong. I got a call back from my friend who had also been called by the person I called to cancel the workshop to check that I had ‘asked’ My friend was appalled that I hadn't 'asked' her to take me to the hospital and quite frankly so was I.

Having gotten over that, I arrived at my least favourite place in style and spent the time entertaining the medical team, well they have a challenging enough days without me adding to it.

I lay around for hours half naked on a gurney and then on the assessment ward, which might have been quite exciting if it wasn’t a public place, I wasn’t in pain and I wasn’t alone (well my friend was with me for most of the time) but I did manage to connect with a patient who softly enquired ‘Did I hear that you had lupus? My sister has lupus can I ask you a few questions?

I put my pain and situation to one side and did my usual encouraging thing, pointers to look out for and ways in which she can help oh and for good measure I gave her my number should she or her sisters ever wish to call. Not bad for an afternoon’s work.

And then they did it!
The Rheumatologist looked at my notes, did her observations, asked me some questions and left me with a handful of white things that she assured me would help. I willingly took them. At this point I probably would have taken anything and in that moment, in that place she was write and I started to feel better.

I learnt the things I cannot do when my hands don’t work and realised that I am not bothered by all of them.
  • Turn on the tap
  • Wipe my bum
  • Squeeze the toothpaste tube
  • Put on my underwear
  • Put my hair in one
  • Open the front door
  • Eat
  • Connect with people online
But more importantly I learnt the importance of 'asking' and I now know that it works, so the next time you need help, support, love, prayer etc. remember that a small word can make a huge difference in your world.

Friday, January 16, 2009

“Hold a true friend with both hands”

That is a wonderful African proverb and although I am not his friend, I'm convinced it is one that mr lupus is taking very seriously.

His latest antics are interesting to say the least. I wake up in the morning and he appears to have been holding my hands between his for the whole night.

I like the idea of a man holding my hands all night, well not just any man, a tall dark handsome, breath taking reflection of God's heart for me kind of man, what a romantic vision! I could dine off that one for a while but alas mr lupus does not fit the bill in anyway shape or form, so let's get back to talking about my hands.

My fingers are swollen and my rings are developing a relationship without me, but I'm still full of hope, keeping driving to a minimum for obvious reasons, but still believing that, whilst it may not be today, it could be tomorrow that my hands resume some kind of normality.

I will otherwise have to resort to some form of defensive action which includes bending, stretching and probably a lot more pain. I'm hoping I won't have to resort to that one.

Saturday, January 10, 2009

There are always consequences!

Today I spent most of the time in my usual horizontal position cuddled by my the settee and comfortably located behind the curtains and away from the outside world. Do you know that after three years of watching Diagnosis Murder I actually found one I hadn't seen before. Amazing I didn't think that was possible, but it just goes to show you that the world really is full of possibilities. You know that this means I will have to continue to watch Diagnosis Murder just in case there are some others I have missed. This gives me a valid reason to keep watching mindless TV (for research purposes of course).

After my day on the settee I thought I would do something different in the evening and ended up walking around the Tate Gallery. Yes you heard me right I was walking around the Tate Gallery and all without any crutch support. I have to say I am impressed and not just because I didn't use crutches, art really is interesting.

But as the night closes in and the day comes to an end I realise that the no crutch thing really was me being ambitious and as I take up my regular spot on the settee I know that am currently paying the price for an evening of fun.

Was it worth it? You bet it was.

And tomorrow is always another day.

Tuesday, January 06, 2009

Okay who turned the freezer on?

I've discovered something new about mr lupus (is there no end to this man?) he loves the cold.

How do I know that?
Well as I sit here writing this my hands are swollen (but I am a writer so the words must go on) and my feet feel like blocks of ice so I am convinced that he and his mates are taking advantage of the change in weather and are currently skating over the ice that now seems to have formed in the nerves in my legs and my hands and are having themselves a whale of a time. I on the other hand am not faring quite so well but I have never (well almost never) let pain and discomfort stop me from fulfilling my mission.

I am now totally convinced, even though the medical practitioners may state otherwise, that I am a child of the sun and only regular doses of sunshine can save me. I wonder if I can get that on prescription? Now there's a thought and definitely something I will take up with my Rhematologist when next I see here.

But for today, I am just going to wrap up warm and wait for my legs to thaw so that I can use them again.

Nothing like the simple pleasures in life!

Friday, January 02, 2009

It's a new day!

I have successfully navigated my way through three or maybe four weeks of hell living with mr lupus, three doctors visits and mountain of pills and pain killers to be able to say Happy New Year and now that normal positive thinking has been removed. Now the half full glass is back in its rightful place I am led to believe that the iron grip of mr lupus in the last few weeks of 2009 was actually him doing me a favour. Yes he was working for me this time (I know that maybe hard to believe but..) and having his wicked was with me in 2008 to make room for a more positive 2009.

Well in order to make room for something new you need to get rid of something old first. (I must try that with my wardrobe :-)) So here is the new me (almost) pain free but definitely up from the settee, no longer watching 24 hour tv and drawing my curtains. If nothing else happens that's okay because that alone says mr lupus I'll take it from here.

What do you need to get rid of to make space for 'healing' and fun in 2009? Maybe now would be a good time to make a change and do something different. Sit up instead of lying down, turn off the TV and turn on the radio, write down how you are feeling, anything that means this is not a prolonged 2008 and infact a new year, a new dawn and a new beginning.

I'm actually looking forward to the powerful possibilities for 2009 so I wish you a pain free, fun filled 2009!

Watch this space because whilst I have the energy I am going to use it!!

Sunday, December 28, 2008

I made it through!

YONGIN-SI, SOUTH KOREA - NOVEMBER 26:  South K...Image by Getty Images via DaylifeWell there we have it another Christmas over. Was it as painful for you as it was for me? I realised that the Christmas spirit was lacking when the best Christmas present I received was to not spend it in a bed in Lewisham hospital.

I am, however, feeling very proud of myself particularly as it really was touch and go but I have decided to have a constructive approach to the hospital thing and not let mr lupus force my hand.

The lastest round of mr lupus and his friends antics has left me itching my arms, legs and back and my tummy has just joined in and just in case that wasn't exciting enough I have started to develop red rashes in the places where I have been scratching that are not going away. It's just as well that Red is my favourite colour :-)

I realise that even in my abnormal world this is not normal and that there just might be something going on that I should be aware of. I've been to my GP twice in 10 days and have successfully managed to add a couple of new pills to my medicine cabinet, but now realise that I need the help of my Rheumatologist (I never thought I would willingly say that) so I am making it a point of popping along for a chat tomorrow.

The last few weeks have been an almighty roller coaster ride with most of it that belly turning, head blasting feeling and I am praying for some steady, solid ground.

In my usual upbeat, positive style I can usually find something affirming in all of this, something to hold on to but I think 'positive thinking' has been suspended for the holidays.

I look forward to normal service being resumed soon!

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Friday, December 19, 2008

I'm afraid!

Diagnosis MurderImage via WikipediaAfter another long day of lying on the settee watching reruns of reruns of my old favourite Diagnosis Murder I thought about it and realised that the most distinguished emotion in recent times have been that of fear.

In fact, I am scared of quite a few things. Things which under normal (although I'm no longer sure what is normal) circumstances would be perfectly easy to deal with today somehow seem really enormous and hard to cope with. At first I couldn't understand where this was all coming from and then I realised that it's another mr lupus tactic. he has been whispering 'lovingly' in my ears embellishing things and making them seem real.

he really has developed a knack of making things that aren't seem as though they are and because he's been so good at it I've really started to believe that what he is saying is true.

I am afraid that:
  • I will have to spend Christmas in hospital
  • I am really sick
  • This is it and life will never get any better
  • If I have to depend on me to get through this I will fail
  • No one understands
  • No one cares
  • I am not good enough
In the absence of more positive rhetoric all of this becomes plausible and true. But now that I have written it down and shared my thoughts with you I am beginning to see the holes in these statements. And as they start to fall apart I realise that mr lupus is not a man of substance and the same energy I am using in 'fear' I could redirect to faith afterall both are about believing in something you cannot see.

I now choose to believe:
  • I will have a healthy Christmas
  • I am well
  • Today is a new beginning leading to brighter and healthier tomorrows
  • I am strong enough to make it through
  • My friends and family care and understand me
  • I am good enough for whatever I need
Bring it on mr lupus, I know your game.
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Tuesday, December 16, 2008

Stop the world I want to get off!

No seriously, stop the world I want to get off!

I feel as though no one is listening to me. Why does the world keep moving? Okay maybe that's just a gentle reminder that horizontal is so much better than vertical.

I know that it's the Christmas season but does mr lupus really have to invite his friends over for a party and do they have to make so much noise. There has to be something terribly wrong with that. I'm currently battling 'a virus' (isn't that a catch all for not sure what's wrong but take these tablets), have some serious mobility issues and my whole body hurts and that doesn't take into consideration high blood pressure, and blood clotting issues.

As you can imagine I am a little the worst for wear, with my body only answering to small very easy to do commands.

I'm back on the settee and back infront of the TV not my favourite place but definitely a familiar one, only problem is TV really is BAD. Isn't there a law against continually repeating programmes? There should be. Maybe I could use my time wisely and start a petition or create a lobby group. Okay enough of that, just the thought of it all makes me feel 'tired' who I am kidding I don't have enough energy to get up and get to the kitchen let alone anything else so strenuous :-)

But the great news is I've lost weight and am hoping that soon I will be able to celebrate that fact.
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Monday, December 01, 2008

mr lupus goes travelling

mr lupus is truly international. It actually dosen't matter where in the worl you are I mean I got on a plan and travelled thousands of miles to get away from him only to find that as I got up to get off the plane there he was. he now has almost as many stamps in his passport as I do and you'd think seeing as I didn't object to him travelling with me he could at least spend his time enjoying the sites and leave me well alone. No of course not he just sees it as another opportunity to smother me with his love and for me just another opportunity to 'fake it' after all I'm on holiday so of course I am well!

I have learnt that whilst on holiday there are things I am willing to do, and boundaries I am willing to push which if I was at home would have left me laid up in bed with my feet in the air wondering why did I think I could do that. Thank God for holiday air - this has to be what they meant when they invented vacation time - it gives you more feistyness.

As I dodge the rays of sunshine, I am sure that I read somewhere the only place to get vitamin D is from the sun, I can't help but wonder about the consequences of my actions. What price will I have to pay for this gay abandon of all that is medically sensible. When the shore changes to concrete, the sun changes to icy winds and the wolf whistles change to icy stares what will be demanded of me?

Well as that is not today, I'm just gonna push those boundaries a little further and challenge mr lupus to tackle me as I relax away from the sun of course on the fine sandy beach, ipod in my ear and a fruit cocktail at hand.

Wednesday, July 09, 2008

There is no help in the kitchen?

Well I did get up and I did go to the kitchen and did it help? Of course not one of my challenges is about food so why I thought the kitchen would be a good place to find light in my present darkness I will never know. I wonder if this was one of the things that mr lupus was whispering in my ears?

So what actually happened?
I got up, went into the kitchen, opened the fridge and found some things begging to be rescued so of course I did the dutiful thing and put them out of their misery. Having a momentous task under my belt I then I thought about food as I opened the cupboards I realised that food shopping was not one of my favourite past times so there was none. So I did what any self-respecting woman living with mr lupus would do I went back to bed and stayed there for the next 36 hours.

Did this help?
I’m not sure, but it definitely prevented me from having to worry about what to do next. I was going to stay there today but having realised (a midnight revelation I think) that it’s my mind that is in trouble so that is what I have chosen to work on today. I think I am in need of a mind detox but obviously I can’t take it out and give it a good wash so I am just going to have to find another way.

What does that mean?
Well I am going to start with the conversations I have with myself and living on my own I have a lot of those intimate moments which up until now I thought were great but now I am beginning to wonder. Anyway rather than psychoanalyze the moment I have decided to write myself some positive affirmations to remind me just how great I am just the way I am on the road to where I want to get to.

Try it yourself.
What things are you saying to yourself? What could you be saying instead?

Monday, July 07, 2008

Talking with the enemy!

I know that I don’t usually use the word suffering so please excuse me, as that seems to be the only word that almost conveys how I am feeling.

Today is one of those dark grey days – Miserable Monday- situated somewhere between Solemn Sunday and Fabulous Friday (well I have to hold on to some kind of hope) and it really doesn’t help to look out of the window onto a dull uninspiring summer day in July. Okay I live in London so I should be used to it, Well today I am finding it hard to feel any joy in being alive, my house is a mess, I’m still in my PJs and it’s almost three o’clock and I haven’t had anything to eat. So I guess it would be okay to say I am not feeling too great today.

Today is one of those days when I would be quite happy to be here on my lonesome, but no mr lupus won’t take a hint and leave me alone, he has to stay real close just to make sure I won’t forget him. How on earth am I going to do that, it’s not like he is forgettable. He obviously hasn’t read the rules of relationship? A girl needs to have her space!

About space, I’d love to just check myself into a place where he couldn’t find me. Somewhere that I don’t have to think about things; where all my needs are taken care of and I don’t have a care in the world. That would be heavenly. My only problem is that now as I think about it instead of basking in visions of 5 star luxury all I can see is a white room padded in style with a locked door and someone else holding the key.

Oops, I think this grey Monday has turned into black Monday! I’m clearly moving in the wrong direction but I’m still moving so that’s okay right?

I think I know what the root cause is although I have been going through the motions of normality I’ve been living a lie and this is the time and the space to let it out into the open.
Lately I’ve had little sleep and little nourishment (I understand the importance of food and water but not quite worked out how to use it to my benefit) and still ‘had’ to maintain a brave face on it all. I think I have become delusional I have started to see mr lupus as a friend, madness I know but he is always there with a listening ear, a helping hand and a shoulder to cry on, he understands my pain, my anguish and my frustration in a way no one else can (well he either causes or triggers it)

But clearly hanging out with the wrong company does nothing to help lift the spirits. Talking of spirits I’m glad I don’t drink because this really would be a great time to drown my sorrows in a bottle. I think intervention from another Spirit would be a better answer.

So what’s a girl to do? (That always sounds better than what’s a woman to do!) Well I’ve decided on a couple of things (two is all I can confidently manage right now) one is I am going to get up and go downstairs and the next one is I am going to go into the kitchen. What will happen next is anyone’s guess and we’ll just have to wait to find out.

Monday, June 16, 2008

A lighter life!

I just came across a magazine in my pile of things to read when I am able to focus long enough for it to make any sense called ‘Lighter Life’. The magazine relates to a diet where you are quite literally starved for months on end to enable you to loose stones in a short space of time. Okay that’s not the publicity information, they actually have a more attractive way of explaining it all and provide supplements and nutrients to keep you going and I know people who have been on it and it has worked wonders for them.

I have to be honest I have considered it myself and as I don’t really eat very much at present (work in progress) I wouldn’t really miss the food side of things but the weekly price is a bit hefty on my meagre salary (oops I forgot I don’t actually have a salary) but the title of the magazine resonated deeply with me and I realised that that’s what I want for Christmas, no not a diet, a lighter life!

A lighter life!
Life seems to get heavier on a daily basis and I don’t know whether mr lupus has been putting on weight which would explain my back pain and why it feels as though I am carrying such a heavy load or whether it is my perspective on things which is causing things to feel or appear heavy. I mean when I have happy thoughts (few and far between) are they happy because something exciting is happening in my life or am I choosing to be happy? I am a firm believer that what we perceive we manifest into our lives but what if you add mr lupus to the equation does the same apply? I don’t know, but I also think that this is a distraction tactic by mr lupus as the more I ponder on the solution to this problem the heavier life becomes and the further I move from my true mission and purpose in life.

My decision
I’ve made a decision I am going to worry less about the why and the how and dedicate myself to the what and the when so I ask you to join me.

What have I learnt?
You cannot always understand why things are happening nor have enough clarity to know how you can make it different but you can always make a decision about taking action and decide on when you are going to take that action. So for me I have things I want to do I am going to break them down into baby steps and decide on what needs to be done and then decide on when I am going to do it and not put pressure on myself believing that there will be a day when the why and how will make more sense.

Monday, June 02, 2008

Sleeping with a friend!

It was 6am and as the sunlight streamed through the window it created a silver reflection on his coat and as I turned to face him a smile came across my face. It wasn’t planned, we didn’t set out to sleep together but Mac had become such an integral part of my life that this was probably the next logical step and the great thing was that the morning after I was still glowing and happy to have woken up with him beside me...

Is this another instalment from my steamy debut novel? Maybe it is, but for now it’s simply the fact that I went to sleep with Mr Mac, my new macbook pro laptop, sad I know, but it just happened honest!

It got me thinking, that when sleep (at night) is a challenge, which it has been for me for a long time, we should be able to call in the sleep patrol and get someone to come and lie down with us until we fall asleep. I am aware that this may sound bizarre to you but some of the best ideas and inventions seemed wacky to start with.

It works
I have first hand experience of how this could work because I had a friend, whose name I can’t remember, but he was obviously a good friend because when my mother died and I couldn’t sleep he would come over and lie on top of the bed until I fell asleep and then he would let himself out and he would do that two or three times a week. I’ve just realised just how nice that was for someone to do that for me. There is probably someone who is willing to do the same for you. So if you have a problem with sleep and have a good friend, partner, husband, wife etc. that can help you out give it a go and let me know how it turned out.

If you are the guy who helped me out 12 years ago, you know him or would like to offer your services please get in touch I need you!!

Tuesday, May 27, 2008

I hope you can dance!

I was sorting through my computer trying to make sense of all of the stuff I have on it and I cam across the following quote and poem and just wanted to share it. It all seemed apt in relation to me, my life, mr lupus and the path I am desperately trying to carve out for myself. It is also exactly what I wish for you on your journey.

Remember your challenge with mr lupus et al. does not define who you are, it simply provides you with a kick up the backside to be more of who you are. We have all heard stories of people who have had to face enormous obstacles and challenges but somehow still manage to rise up, make a difference and enjoy the life they have. What makes them different, is it some supernatural gift, it might be but it is also the fact that they chose to be themselves warts and all. They chose to live in the moment and make the most of the cards they have been dealt.

You can do it too!

"I do not allow myself to be overcome by hopelessness, no matter how tough the situation. I believe that if you just do your little bit without thinking of the bigness of what you stand against, if you turn to the enlargement of your own capacities, just that in itself creates new potential." Vandana Shiva, Activist and Author.

I hope you can dance!

I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty-handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you’ll give faith a fighting chance
And when you get the choice to sit it out or dance
I hope you dance…I hope you dance
I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Livin’ might mean takin’ chances but they’re worth takin’
Loving’ might be a mistake but it’s worth makin’
Don’t let some *-bent heart leave you bitter
When you come close to sellin’ out reconsider
Give the heavens above more than just a passing glance
And when you get the choice to sit it out or dance
I hope you dance…I hope you dance

So the question is shall we dance?

Yesterday was a great day!

Yes you heard me right I said great and all the while with mr lupus biting at my heels. I know the weather was lousy but I set myself one task (just the one) and I managed to achieve it and more, so I am taking time out to celebrate which sounds so much better than saying I’m exhausted and need to lie down.

For all of us who have the long to do list I am in favour of scrapping it and setting one major daily task (if you are feeling adventurous try two) and then diligently going about achieving that task and when you’ve done it, you have the choice of either standing back and admiring the achievement or starting another task. I’m all for admiring a job well done myself and think having only one main thing to do each day is the productive way to go.

So you are probably wondering what was that one thing that has got Carole so excited and left her wanting to shout it loudly from the rafters.

Well this is it.
I had a candlelit, sweet smelling, bubble bath with soft music, piped into the bathroom through my Ipod. This may sound like a very simple task but let me tell you it wasn’t. I had to:

  • Navigate my way through the bathroom (It resembled a scene from Hansel and Gretel with items like the bread crumbs left lying around so that they could find their way home)
  • Create an environment that was conducive to my pampering session (do you know how long it takes to get tiles shining again?)
  • Get into the bath to luxuriate (I like that word) in the sweet smelling bubbles as they lovingly caressed my body basking in the ambience created by the candles.

And then came the task I hadn’t bargained for.
Whilst lounging in the bath I thought about Cleopatra bathing in asses’ milk and could picture myself being pampered on a daily basis. I felt like royalty and for a while I had forgotten all about mr lupus. That was until it was time to get out of the bath.

How could I have forgotten (that memory thing again) the challenges of getting out of the bath, that’s what the bath aids are for. As I tried time and time again to get out of the bath, praying for strength in my arms and legs I couldn’t help but laugh so what if it was a challenge I had achieved my task for the day.

I am pleased to tell you I am not writing this from the bath!!

Challenge yourself
Set yourself one thing to do today and take action to achieve it.

Yes you can!

Wednesday, May 21, 2008

I need your help!

I hover in front of my living room curtains, but my brain refuses to give the order to my arms to open the curtains and let the light in. mr lupus has tricked it into believing that staying in the dark is the safest place to be, but as the sunshine knocks lovingly at my curtains I instinctively know that this is not true but the chains that bind me, although invisible to the naked eye, hold me tightly bound and I am unable to translate my positive thoughts into any meaningful action, so I am enlisting your support to help release me from these chain. Don't worry I am not asking you to be my Indiana Jones just to encourage me to keep moving forward. Just knowing that you are listening to me already seems to have loosened the chains and provided me with a little more clarity of thought.  Thank you I know what I need to do.
  • Want to open the curtains - okay this is a tough one after all what difference does it make and couldn't that energy be better spent else where? I've thought about it opening the curtains will let the light in and sitting in the darkness only the act of letting light in (however little) will make the difference. Okay I really want to open the curtains.
  • Know why I want to open the curtains - Well this one is already taken care of.
  • Have the ability to open the curtains - I know I can do it. I have both the ability and the evidence to back it up.
  • Get support so that I know I am not alone - I have reached out to you and I already feel the warmth of your support.
  • Take a deep breath - Breathing is one of the most powerful weapons at our disposal and one we do not use effectively or often enough. I know breathing comes naturally that's not what I am referring to I am talking about those deep breathes that help to centre us and get us focused/refocused.  
  • Take Action - Now this is the big one. Hold on a moment I am going to take action whilst you are still here. I've done it! and the room is so much brighter, a much nicer place to be and further more I am free from the chains.
How could I have forgotten this feeling so easily? I realise when I do not have a vision or image of what I want or how I want things to be any sign of challenge (and we know about mr lupus and his challenges) I'm stuck and the lights automatically go out but I have discovered that I do have access to the light switch I just need to trust, believe and ask for help and then take the necessary action to let the light back into my life.

Thank you for your support.

Now whilst the steps outlined are about me and my curtains, they can equally be applied to anyone and any situation so if you have a specific (mr lupus has a lot of non specific challenges) challenge identify the steps you can take to make the difference in your life and live a more freer life.

Remember it is you who makes the difference in your life!

Monday, May 19, 2008

The power of a detox!

I can now officially add radio to my long list of media appearances, talking about the subject near and dear to both our hearts 'mr lupus' (okay maybe long is not quite the right term but I have now appeared on both TV and radio)

I'm back home from sharing the air waves with the esteemed Eddie Nestor (2007 speech broadcaster of the year) Well my mother always said if I was going to do something I should aim for the top. I just never realised the journey to the top was going to be such an uphill ride.

I fancy myself as a bit of a radio personality, after all I do have the gift of words and I am convinced I was born to talk for a living so watch this space. Anyway back to my moments of fame. We (Already I am taking this broadcaster thing seriously) were joined by Angie Davidson from St. Thomas' Lupus Trust and talked openly about mr lupus, his antics and the affect his presence has on us.

Eddie asked me a poignant question how does (mr) lupus affect me on a daily basis, a question I thought I knew the answer to but on reflection I'm not sure I have ever articulated it honestly before. In fact just thinking about it makes me feel a little uneasy as I realise just how much in denial I have been about so many lupus things in my life. I didn’t want people to see me differently, but the truth is I am different and difference does not have to mean negative. I think I have mistaken the 'glass is always half full' thinking with if you ignore it somehow it will all magically go away.

I am tired and disappointed or more appropriately 'pissed' off at the way things are and the way they have turned out but until I face mr lupus head on I am going to continue moving in ineffective circles.

So today I am going to come clean by writing down exactly how all of this is affecting me. I know this may well change tomorrow but my concern is less about tomorrow and more about right here and right now. My feelings are quite strong and I am not yet ready to share them with you so please bear with me as I go through my lupus detox

Thank you Eddie and Angie for pushing me to face my demons.

Please join me!
Now is also the time for you to come clean. Get your pen and paper out and write down exactly how you are feeling, what/who annoys you, makes you feel angry and how this is all affecting you. Don’t be afraid, let it all out. Allow your words to be the healing balm reaching the parts that steroids never could.

Don’t let mr lupus off the hook. When you are satisfied with your outpouring read it over in the knowing that by releasing it all you have taken another major step on the road to wellness (the other step was reading this blog) and then burn it

Before mr lupus gets too complacent with all of the attention write him a ‘Dear John’ letter telling him how you feel and what his presence does to you and why you will put up with it all anymore.

Remember a detox always gets ugly as it clears away the debris and the crap before giving way to a cleaner, decluttered and you.

Sunday, May 18, 2008

A booty call!

I know it's unusual for me to post twice in one day but I just had to share this with you I am meeting up with a man later this evening. Yes you heard it a man! In fact he is sending a car to pick me up at 11pm (GMT) for us to link up around midnight. I'm really quite excited, I haven't seen him in a while and it will be great to be in his company again. I think I actually have an extra pep in my step which has to be good.

I haven't decided on what I am going to where yet but I know it will have to be something that makes a statement (and fits so that narrows it down a bit). I wonder if I have time to buy something new? Isn't that what people do when they have a date? My friend has even referred to it as my booty call.

Sounds good to me!

I have to come clean
Although I would love to say that this is a clandestine meet up with a new beau but it's not true. I am being picked up to appear on a radio show, yes I am going to represent and let my star shine I promise to do you proud. I am talking about our not so favourite subject mr lupus so if you are awake you can tune in please do so. If you are in the UK it is BBC London 94.9fm or you can listen online www.bbc.co.uk/london