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

Introducing Living With Lupus

This blog is about how to get by living with lupus in the real world: that is when you step outside the consultant or doctor’s room and actually have to get on with the rest of your life.

It is intended to discuss the kind of information I would have like to have been handed alongside the medical literature I was given on that bemusing day I was first diagnosed with having a disease that I had never even heard of and couldn’t even say. Systemic Lupus Erythematosus’ hardly trips off the tongue, and it certainly doesn’t sound very friendly! On that day, little did I realise how big an impact on my life as a whole it would have.

Whilst healthcare professionals usually provide medical and some superficial practical lifestyle information, the patient is often not prepared for the wider psychological, emotional, lifestyle and practical implications of ‘sharing their lives’ with lupus, which they are necessarily bound to do, like it or not. ‘Lupus Now’, the magazine produced by Lupus Foundation of America can be very helpful but much literature often only scratches the surface of ‘lupus lifestyle’ without really getting into the real ‘nitty-gritty’ or helping with specifics. There is also a lack of information, help or suggestions on how to mentally and emotionally tackle lupus, something that can be challenging. For me, the richest source of help on this front comes from other patients but even this can often be buried beneath layers of negativity or scary stories that can be off-putting. There is clearly still space for a positive source to pool suggestions for this kind of thing based on real life experience.

I am approaching this subject from a number of perspectives.

Firstly, as a lupus patient: I was formally diagnosed in 2002, but as is often the case with those diagnosed with lupus, realised with hindsight that I had lived with the condition for much longer than that. The impact lupus has had on me has varied over the years. I have had some years of ‘niggley’ lupus where symptoms are irritating but by no means unmanageable, to ‘devastating’ lupus that has been life-threatening resulting in Intensive Care and heavy-duty treatment. So the fact is it has become a significant albeit decidedly unwelcome, part of my life which I have had to try to get some kind of handle on.

Secondly, I approach this as a ‘modern’ woman: I consider myself fairly regular girl from London, living my life with all the concerns, interests, pressures and preoccupations typical of women today. Unlike some of the information prepared by doctors and organisations, I address the subject of ‘living with lupus’ from a perspective personal to the lives and concerns of real women.

Thirdly, as a qualitative researcher: because this is what I do for a living (when I am well enough).  When I started the process of writing this I found it nigh-on impossible to remove my researcher ‘hat’, so decided to embrace it. Since leaving university (10 years ago now – yikes!) my career as a market and social researcher has revolved around me ‘prying into the lives of others’, mainly by listening intently to people but also using other techniques. It is also convenient that my specialism has been health related and personal subjects. Over the years, I have researched topics as diverse as living with obesity, sexual health, personal hygiene and vaginal thrush – oh, the glamour! Still, this has provided me with a solid foundation (and a rich bank of other highly qualified research professionals) for exploring with other women how they manage life with lupus and to help illicit from them strategies and tips that could benefit others. Who is better to help and advise on the subject than someone who has been living it and doing it themselves?

The research project I undertook with my respected colleague and treasured friend Elena in 2007/8 gave us more than we were bargaining for. Not only did we unveil some really poignant insights, we made a connection with some very inspiring individuals who are now supporting us on our mission to help people with lupus find the most positive way to approach their lives and to help us raise awareness; which is something in itself that would significantly improve the lives of those with lupus.

It is vital to make clear that all this does not pretend to suggest that a single straightforward ‘solution’ to how to live your life, with (or without) lupus! Of course, everyone is different and entirely individual with different perspectives, lifestyles and backgrounds. Lupus is equally individual and has symptoms that are so bafflingly diverse that two patients rarely experience exactly the same thing. In light of all this individuality, everyone’s approach to living with it will be individual. What works for one, will not necessarily work for another. There is currently no cure to lupus or one medical ‘fix’, and similarly there is no one approach to managing life with it. Sadly, I am afraid there is no ‘solution’ as such. However, just as the medical professionals must endeavour to tailor the optimum concoction of drugs to help best treat each patient, it is for each individual with the disease to find for themselves how best to live with it. My research has shown me just how amazing and inspiring patients can be at doing this. Also, anyone who lives with lupus knows that it is not always easy and in some instances it is painfully difficult and far from straight-forward. To say otherwise and pretend that there is always an easy, simple way to get through it, would be to trivialise something that is truly challenging.

Instead, the aim of this blog is to try and explore ways to help ‘smooth the way’. By sharing my own experiences and the lessons I have learnt, as well as those we have learnt from our research with other lupus sufferers, I hope to help identify options and possibilities that can be tailored to fit your own lupus and your own life. They say ‘a problem shared, is a problem halved’. I am hoping that at least for certain things this might work in reverse, and that ‘a solution shared’ could be ‘a problem halved’.

Each monthly entry posted will be designed to explore a particular issue or topic or offer some tips and advice but there is bound to be far more that could be said and we hope you will add comments, advice and help wherever you can.

Our first topic will be ‘Getting your head around lupus’ ... seems an appropriate place to start!