Monday, 8 December 2008

Lupus Through the Looking Glass

Getting to grips with the peculiar relationship between lupus and personal appearance

I’d been through the mire. I’d undergone a whole host of hellish treatments. I’d been through the (thus far) lowest, sickest and most desperate time in my otherwise very fortunate life. It was with a dubious sense of somehow being ‘cheated’, and even with a feeling of mild irritation that I received the comment from kind friends and loved-ones trying to offer well-meant consolation, “the funny thing is, you look so well”. After all, weren’t they right? Couldn’t this be a small silver lining?

Another scenario: trying to convince various doctors in the absence of having anything actually physical to show them that I felt bad; that things were definitely ‘not quite right’. I felt I needed something to prove things weren’t in order. This was not helped by the fact that all the tests they were doing confirmed what my appearance suggested: I was right as rain.

As you may well have experienced yourself, with lupus, looks can deceive. The level of ‘butterfly rash’ I get is relatively mild. It has often actually appeared as a rather flattering splatter of ‘rosy blush’ on my cheeks and there is also nothing like a bit of a fever to give me a ‘healthy glow’.

And yet on the other hand, I am as vain as the next man (or woman!) and on the occasions where there is distinct visible evidence of what is happening within, either as a direct result of the lupus or a side-effect of the drugs, I’m mortified!

I can’t help but feel a bit guilty worrying about my appearance in the face of a serious illness, but I was reassured to find I am not alone in this when we did our research. The important interrelationship between mind and body is something I have learnt cannot be overstated and is absolutely vital to Living Well with Lupus. I guess in this context it is important to respect these fears and concerns however trivial they may appear in the wider scheme of things. It is undeniable that things such as losing hair or having a rash on your face can have a huge impact on anyone’s sense of wellbeing and identity.

A funny example of my arguably ridiculous vanity is when I was fresh out of Intensive Care. I had just been moved to another ward and my first request was that Tony should bring in a razor to add to my wash kit. When he did, I got him to  push me in my wheelchair along with the intravenous drug wheelie contraption that was attached to my arm, to the shower cubicle so I could shave my armpits that had had significant opportunity for growth when I’d been ‘out of it’ on life support in Intensive Care. It was an archaic NHS building (since then rebuilt thank heavens!) and unfortunately the faulty shower caused the ward to flood, but at least my armpits were as smooth as a baby’s bum!

The personal appearance miseries that have been inflicted on me by lupus so far include moonface, acne, glowing death-white fingers (and toes), swollen knuckles, a crimson red moustache rash (that I thought would never go), burst veins from too many needles that made me look like a junkie – oh, and some ‘unwanted’ hair growth from those damn steroids - nice! Weight gain (due to Prednisolone) and hair loss are other horrid physical manifestations that all too frequently distress ‘loopies’.

In a similar way that the “but you look so well” comment grates when there are no physical symptoms, there is something slightly irritating when again well-meaning others pretend that they can’t see anything when the visible evidence is right in front of them! Denying it (even if it may seem like a fuss about nothing to them) makes you feel dismissed and unwarranted in your natural worries. On the other hand, making a joke about it is the reserved privilege of my younger brother, who is the only one who can get away with tugging on my ‘moon’ cheeks saying “but it makes you look so cute!

For anyone out there now wondering how the hell they are supposed to respond in a minefield of such sensitivity, I find the approach that both Tony and my good friend Kirsty take is the best. They simply agree that “Yes, that is a nasty rash / moonface (or whatever), I can see why it is making you miserable” but then go on to say something reassuring along the lines of “at least it won’t last forever and it probably appears far worse to you than it does to everyone else”.

So what to do about all this?

As ever, I have found the way forward is acceptance, e.g. ‘OK, I now seem to have a red moustache’ (or whatever it might be) followed by a plan e.g. ‘what am I going to do about it?’ Kicking, screaming and lamenting are all futile (although possibly therapeutic if used in measure and kept brief!) but accepting and tackling the situation is constructive.  Tackling it can often be twofold: emotional as well as practical. Changing your mindset by being realistic, kind to yourself and consciously putting it in perspective is very helpful. As the late Richard Carson put it, try turning your ‘melodrama’ into a ‘mellow-drama’!

Beyond this, practical measures are called for. I plan to write in more detail about particular individual beauty issues at a later point (my personal beauty tips mainly revolve around dealing with Raynauld’s Condition , moonface, avoiding steroid weight gain and acne). I also always seek suggestions from you.

In the meantime, here are some general beauty things I’ve learnt that help me:

  1. Discuss whatever it is it with an appropriate professional (albeit a hairdresser, beautician, dietician) to find out what advice they  have and what can reasonably and safely be done – don’t forget to ask your doctor too

  2. For disfiguring skin blemishes Red Cross do regular camouflage clinics – I attended one at The Louise Coote Lupus Unit and the lady was very understanding, kind and helpful and prescribed concealer and powder as well as showing me how best to apply it

  3. Treat yourself to nice products and pamper yourself to make you feel good about yourself and make the best of your physical assets, to help draw attention away from less satisfactory things. I was bought some gorgeous bath and shower oil called ‘Relax’ by Aromatherapy Associates that never fails to make me feel at least a little better

  4. Smell good. Oddly, a little splash of my favourite perfume always makes me feel I somehow look better!

  5. Wherever possible, smile. It works inside and out.

Thursday, 4 December 2008

Accepting a changing story

I have moved from getting by and surviving with lupus, to getting on and thriving - looking back I find out why ...

You may have noticed that so far I have not written much on this blog about my own particular lupus ‘story’.  The reason I raise it is because I have been asked by others who are helping me with Living Well with Lupus, why this is. They reckon that it would be a good idea to include my story because it would firmly show Living Well with Lupus is rooted in personal and real human life, which is very much the intention. Having thought about it, I agree and I do intend to post something at the beginning of next year with the aim of launching a ‘Loopy Stories’ section on this blog where different ‘loopies’ will share their stories, thoughts and tips but this got me thinking, ‘why  hadn’t I done it spontaneously?’ and the answer was illuminating ...

The first and most obvious reason is that I am really conscious that I would never want the whole Living Well with Lupus thing to be about me as a kind of Daisy Seale-Barnes, ‘me-me-me’ ego showcase’. I want it to be for and about all ‘loopies’, their supporters and most especially for the ‘loopies’ who directly helped us with our research, who also inadvertently helped me personally by being so inspiring at a time I felt I was living on a petrifying lupus rollercoaster. They showed me I was not the only one to be going through this and I was not the only one looking for answers.

The next reason is a little more complicated to explain, but when I thought about it I realised how important it was because in this explanation I was able to identify the key to what turned the situation around for me and made me able to cope much better and live more happily with lupus than I had ever been able to before.

The fact is I already wrote my ‘story’ in February 2007 for St Thomas’ Lupus Trust website (you can find it at and for some reason I kind of felt ‘bound’ to it which made me reluctant. This was because whilst the events of the story remain fact (although they have developed somewhat since then) I no longer feel comfortable with the underlying attitude that comes through. I didn’t want to use that version of ‘Daisy’s Story’, because I no longer see it as an accurate reflection of how I feel today.  The ‘me’ that wrote that story then, is not  the ‘me’ of now and the attitude of the old ‘younger me’ doesn’t reflect the message I want Living Well with Lupus to promote and I suppose my new more enlightened self feels a mixture of embarrassment and pity for the me of that time. I was in a far worse place than I realised.

In fact having just read it again, I realise that there is just one sentence that particularly jars. It is when I say that “I will keep fighting back, brushing [lupus] aside whenever possible” but I also shy away from some of the other ‘defiant’ language of battle I used, such as when I talk about “winning” as if there were some kind of ‘competition’ between me and lupus.

I must confess in the early days after my diagnosis, before my symptoms became so grave and long before I wrote ‘Daisy’s Story’ in February 2007, I was under the impression that my strong will and stubborn nature would mean lupus would never become a major problem for me. Although I made a few token life ‘tweaks’ to address it, I resolved to carry on as per normal, but I firmly held on to what I now realise was a slightly arrogant and very naive mindset. If I am honest, I thought lupus only ‘got to’ those with a weak will and was relished by ‘moaners’ as it gave them fodder and focus for their negativity. Thankfully by the time I wrote my story I had been humbled from this conceited attitude and had moved on a long way, but I still had a way to go.

With the passage of time and events that have occurred since then I have learnt much more and am now living a lot easier as a result. What has changed is that I finally learnt that it is futile to try and ‘beat’ lupus by denying, rejecting and battling with it because, like it or not, it is in my life.  I  learned the hard way. After every flare-up I'd try  to carry on as if nothing had happened, as if lupus  didn’t exist until eventually I realised that this approach only ‘enrages’ the lupus until eventually it flares-up in anger - sometimes sooner, sometimes later.Since this finally sunk in things have been much better.

In my favourite little book Don’t Sweat the Small Stuff, Richard Carson suggests that we open ourselves to “’what is’ instead of insisting that life be a certain way”, and that by “surrendering to the truth” we gain a deeper perspective and enjoy greater peace of mind. I think it was in this vein, that by accepting that ‘it is the way it is’ when it comes to my lupus, that these days I get on far better.

Nowadays I adopt a softer more malleable attitude and live around it.  The way I see it: rigid things break and smash into lots of pieces, soft things mould and stay in one piece. With lupus it is necessary to be flexible and to develop patience in abundance!

It is very important to say that this does not mean I allow it to stop me doing what I want to do, or make  a bigger deal of it than it needs to be; quite the contrary. Funnily enough Tony and I were talking about this the other night, how after the events of the last few years in many ways we are now living life in a far more desirable and enjoyable way than we did before! Because we have to give so much more thought to what is important to us individually and as a couple, we have really established priorities. Once priorities have been identified  it is possible to move forward. In our research we described the steps as »Stop »Think »Plan. Admittedly, certain trade-offs and compromises have to be made, but the truth is  I now do more of the things I want to do, spend more time with people I want to spend time with, eat the way I want to eat, work in a way I like to work than I ever did before, and I am much better at saying ‘no’, because I am clear about my boundaries.

It seems we have developed a new appreciation of life and have become acutely aware of how valuable every healthy moment is. Obviously priorities change and plans shift accordingly. When  lupus does decide to make an appearance, we accept it and deal with it in a calm and pragmatic way. Perhaps unsurprisingly the lupus seems to have mellowed too. By recent standards, my health has been much better.

All in all, I am looking forward to retelling my story in January, because now that I have accepted that lupus is one aspect of my life it has become a happier and more fulfilling story to tell.


On my Soapbox

Hospital parking charges are adding insult to injury

Since the beginning of last week I have had to be in and out of my local hospital more frequently than usual due to a dramatic drop in my neutrophils and white blood count, which are now at an unsafe level. It is perhaps because I am now essentially in ‘quarantine’ and feel a bit like a caged animal that I have had time to brood on the issue of hospital parking fees.

Before every hospital visit, I have to scramble around to make sure I have enough change in my purse or go to the cash point and get a note to turn into change for the machine: hassle, time, stress.

As I am never entirely sure how long I am going to be, I always end up paying more parking fees rather than less to cover my back. The fine for not paying or underpaying is big and clamping is in operation. The machine gobbles the coins greedily. It is difficult to know how much money to put in because it is hard to guess how long the visit will take, sometimes there are delays, sometimes I am sent for tests, or to the hospital pharmacy all of which take extra time, but sometimes I am ‘in and out’ like a shot. I never know.

It seems that the system is designed to get as much money from you as it can. It costs £2 an hour. The other day to be on the safe side I estimated I would be an hour and half, so I put in £2.50. The ticket the machine produced, showed just one hour! Apparently, you have to pay £4.00 for one to two hours and there is nothing in between!

This cost and stress is nothing compared to what my family have had to go through during times I have been an in-patient, when they have spent hours and days at my bedside. Anguish and anxiety don’t exempt you from parking fines. There was an emergency situation when there were no parking spaces so we abandoned the car in a residential spot with a note explaining the predicament. I ended up falling unconscious in A&E and my poor mum who was with me in great distress, later discovered she had given a parking ticket to add to her woes. My husband also got a parking fine because he was late back to top-up his fees after another traumatic night with me in a desperate state. He got small satisfaction by calmly telling the warden who was issuing the ticket about the state he had left me in and inviting him to seriously consider what he had just done and how he would feel if it was his partner, then went on to wish him a good night’s sleep. OK, it is probably a case of ‘shooting the messenger’ but I think it made Tony feel a bit better at the time and hopefully encouraged the warden to think about compassion.

I use my experiences to illustrate the point, all the time knowing that this affects everyone. Most ‘loopies’ and their families are likely to have had similar problems and spent a small fortune on hospital parking – in fact anyone with any kind of chronic illness or ongoing health problem is in the same boat. All in all, it costs a fortune not to mention extra stress and hassle at a time people need it least!

Thankfully both Wales and Scotland have made the decision to scrap hospital parking charges, so it seems that this madness is now confined to England (and potentially Northern Ireland who I think are still in the process of reviewing it). And I thought we were supposed to be a ‘United Kingdom’?!

Anyway, in the spirit of the ‘proactivity’ and ‘assertiveness’ of a ‘loopy’ choosing the Living Well with Lupus path (and because I am climbing the walls stuck at home in isolation!), I Googled ‘hospital parking charges petition’ and found the following, and I for one am going to add my name:

Thursday, 27 November 2008

Managing Medicine Muddle

As I discovered the practical reality of having to take so many medicines each day can be a real pain and can eat up far too much precious time and energy. Here is how I got to grips with my medicine muddle ...

Most ‘loopies’ have to take some sort of medication daily. It is not unusual to walk away from the pharmacist with a shopping bag brimming full of what looks like a wonderful sweet shop of pills of different colours, shapes and sizes to take each day. However, clearly unlike the sweet shop an ad hoc ‘pick and mix’ approach is not a great idea when it comes to taking your medicines!

As I discovered for myself, managing medications on a daily basis can be very confusing and it is easy to get in a muddle, especially when you are either really ill, or busy. It can also be easy to forget to take it all, or to remember whether it was today or yesterday you downed that handful of tablets?! I found that getting through the obstacles of obtaining the medicines from the GP and pharmacist in the first place, then working out how much of each drug to take, and checking you take the right number of the right tablets at the right time all added to the confusion and the whole thing was a real hassle.

I know things got worse each time new pills were added to my repertoire and to make matters worse, additional medications usually corresponded with my lupus being worse and my energy and patience being lower. I used to riffle through a variety of packets and boxes every morning, assembling a little pile of pills next to me on the breakfast table, that I would often joke could be added to a bowl of milk and called my ‘second breakfast cereal’. Each time I just had to hope that I had done it right and hadn’t missed anything or accidently taken some sort of fatal overdose. Daytime and evening pills were more prone to being forgotten entirely in spite of my best intentions. It was all ‘a bit hit and miss’.

However, after this rather haphazardous approach and thanks to the ‘subtle hint’ gift of a pink pill dispenser from my ever-concerned Mum, I eventually managed to streamline the process and become far more adept at taking my pills as prescribed.

Here are some of my top tips to help make it easier:

  • Prepare a personal medical routine preferably on your computer and update it each time there are any changes. This acts as a quick reference and helps you to be clear about what to take and helps you avoid making mistakes. Include drug name, dose, how many pills, what it is for and when to take it and make a note if any should be taken before or with food and when/if to alter the dose. It is also handy to take with you when you visit the doctor / pharmacist

  • Use a weekly pill dispenser to allocate medicines at the beginning of the week. OK, it takes a little while to do, but if you set half an hour aside each week and use a print-off of your daily medical routine to help you (as described above) it pays off. For the rest of the week you no longer have to waste time fishing around, looking for and opening different packs and the chances of making a mistake are significantly reduced. Importantly, if you are a bit forgetful like me, it is a way of checking whether or not you have taken your pills that day. I bought mine from  and it has the advantage that each day’s pills are in separate containers labelled with the relevant day of the week (if you are away from home you just take those you need) and each of these is divided into ‘time of day’ compartments so you can divide medicines into the times of day they need to be take. All handy stuff!

  • Keep a dose of crucial medicines in your bag so you have them at all times, so if you forget to take them in the morning and remember later you are able to take them immediately. It also gives you the freedom to make spontaneous decisions to stay away overnight without messing up your medicine routine ... after all, you never know!

  • Sign up with a pharmacy that has a repeat prescription Delivery  & Collection Service. It is easy to realise when it’s too late that you have run out of an important medication and it is frustrating when you are spending far too much precious time to-ing and fro-ing between the GP surgery and pharmacy. Since I joined up my local pharmacy’s repeat prescription Collection and Delivery Service these problems have become a thing of the past. It goes like this: I send an email to my GP surgery requesting the medicines I need, two days later I get a phone call from my local pharmacy to say my medicines are ready. All I have to do is to pick them up from the pharmacy and on one occasion when I was very poorly, they even delivered them to my door! It’s as simple as that. I use ABC Pharmacy but there are others who offer the same service.

  • Consider buying a Prepayment Prescription Certificate if you don’t qualify for free prescriptions. When I came out of hospital with a new ‘shopping list’ of medication and found out how much it was going to cost me in prescription charges, I nearly fell over backwards! Thankfully, someone told me about the Prepayment Prescription Certificate and it has saved me a lot of money. If you pay for more than 3 prescriptions a month it is worth considering buying one. I pay £102.50 a year (and you can pay in instalments)




Getting your head around lupus

Living Well with Lupus is all about doctoring the way you think ... 

This analogy, to which you may relate, is one that I devised in the middle of the night when I was suffering from steroid-induced insomnia at a time when my lupus was very bad and had started to take its toll on my naturally positive and cheerful disposition:

‘Imagine that your body is your ‘house’ and ‘home’. ‘You’ (your soul and being) live in your house. Lupus visits your house. Sometimes he is a slightly irksome visitor that doesn’t stay long although it is a big relief when he has gone, other times he is a psychotic and vicious squatter who has gate-crashed and refuses leave. Either way, he always has a key. The damage he does to your ‘home’ can range from minor misdemeanours to reeking devastating havoc. As an occupant of the same house, the more damage he does the more it starts to affect you. It wears you down. Your personal living space is violated. At a certain point the damage can go beyond the ‘bricks and mortar’ of your house (your body) to the occupant within (to ‘you’, your ‘core being’). This is when it starts to get personal. Whilst the builders, decorators and cleaners (medical professionals) can deal with the physical repairs ... but it’s up to you to fix the emotional damage for yourself’

In the introduction to his fabulous book ‘Don’t Sweat the Small Stuff’ (a personal favourite of mine so sorry if I end up harping on about it!) Richard Carlson quotes William James:

The greatest discovery of my generation is that a human being can alter his life by his attitude

This insight is critical when working out how to get by as best you can with lupus because, let’s be honest: quite frankly having lupus is rubbish and something no one in their right mind would choose. In fact, because the word ‘lupus’ is the Latin word for ‘wolf’ it has often occurred to me in my darker moments that it bears a striking similarity to the duplicitous wolf in the fairytale ‘Little Red Riding Hood’. Lupus is the kind of evil character that would eat your Granny, disguise itself and then try to eat you too! After all, it is widely known as ‘The Master of Disguise’ and the ‘Disease with 1000 faces’.

But really this leaves two choices for someone with lupus: allow it to ‘eat you up’ and essentially dominate your life, or adopt a positive attitude and learn to manage and live life well in spite of it.

Living Well with Lupus is for anyone interested in option 2.

The whole Living Well with Lupus project is dedicated to exploring the emotional and practical problems ‘loopies’ encounter and how to develop the best attitude and behaviour to overcome them, so we hope you will find (and contribute) lots of ideas and details as it goes on. In the meantime, here are ten key overarching mindset ‘gems’ for ‘getting your head around lupus’ (many of which came from the lovely ‘loopies’ in our research) that offer a great starting point for ‘loopies’ far and wide:


  • Whilst always being mindful of lupus, live around it; not by or through it
  • Focus on making the most of what you can do, not what you can’t
  • View yourself as a person with a chronic illness rather than a chronically ill person
  • When it’s bad remember that "It's just a moment. This time will pass"
  • Use creative ways to work around the obstacles the lupus presents and be open and flexible to making changes
  • Find your ‘inner-hippy’; being chilled is one of the best things a ‘loopie’ can do to help themselves
  • Be kind to yourself. You are only human. You can only do so much and remember no one is perfect (and anyone who was, would be decidedly dull anyway ... which arguably makes them also less than perfect like the rest of us!)
  • Learn to be a ‘tough cookie’ by talking yourself ‘up’ when you start feeling you are being defeated
  • Energy is limited and a precious commodity for a ‘loopie’. Use it wisely.
  • ‘It’s good to talk’; find someone who will listen to you when you need to offload