‘Hats Off’ to the Dr Hajela’s of this World!

Finding a doctor ‘packed’ with the right qualities makes a world of difference to Living Well with Lupus ...

Last week I went for my routine appointment with Dr Hajela, the Rheumatology Consultant whose care I have been under for some years now. At the end of a positive consultation which confirmed the continuation of the recent improvement in my health lupus-wise, Dr Hajela informed me that he and his family are moving away from London so he will no longer be working at Lewisham Hospital. In other words: he will no longer be my consultant.

When I heard this news, whilst I was very pleased for him and his family, from a personal perspective, I was very sad and to be honest, somewhat unnerved. The reason is that I can honestly say that Dr Hajela has played a vital role in enabling me to obtain a good quality of life and to achieve a degree of stability that once seemed may never be possible; not to mention that we (me, my husband and my family) are acutely aware that it was his brave professional decisions at critical times that saved my life (in the most literal sense) on more than one occasion.

Talking to other ‘loopies’ reveals that the period before lupus is formally diagnosed is very often one of the hardest because an array of seemingly unrelated symptoms plague you on and off, some of which you dismiss yourself or put down to other things and within the medical profession, you are passed from ‘pillar to post’ often feeling disbelieved or as if you are ‘making a fuss’ or that you are being dismissed as a ‘hypochondriac’. With a condition that is as complex and difficult to diagnose as lupus, it is often not until you are lucky enough to come across a highly competent doctor who takes you seriously that you can get a handle on what is happening and do something about it. For me, Dr Hajela was the man who did this. By simply believing me and working continuously to help throughout the ups and downs, he has been a rock for me during the most difficult times of my life.

Ultimately it is excellent doctors like this that play a huge part in enabling people with lupus to ‘live well’, so I thought it might be helpful to try and identify the qualities that make the difference. I found that for a doctor that is going to move you forward, what you are looking for is one like Dr Hajela that combines the whole ‘PACK’ of skills. These are:

Professional
Accessible
Caring and Compassionate
Knowledgeable

Although having read this list you may think it sounds a bit simple or even excruciatingly obvious, in reality finding doctors that actually embody all these qualities can be difficult. They can sometimes seem like a rare breed but Dr Hajela taught me that they do exist and over the years, where necessary, he has also referred me to other specialists who I find similarly equipped with the same particular ‘PACK’ of skills. Such doctors are a credit to their profession.

As sad as it is to be losing Dr Hajela when we concluded our final consultation last week, we both agreed that in many ways it couldn’t be a better time for a ‘farewell’. He leaves knowing that for this patient at least in many ways his work is done. I am no longer ignorant about having lupus and have been taught to watch out and respond to the signs myself so it never need escalate out of control as it once did. He has identified the best set of medications to control my symptoms and I am now able to lead a life that is not completely dominated by lupus and I am at the end of the final trimester of what has amazingly been described as an ‘unremarkable pregnancy' (!) so in a few weeks, all being well, we will be embarking on a new family life. Without Dr Hajela’s help and support it is highly probable that Tony and I would never have had the chance to fulfil this dream.

Many thanks and good luck Dr Hajela!

Little things, big difference

Looking back, working out how to ‘live well with lupus’ has taken yonks, and really it’s an ongoing process: I’m always looking for ways to make life with lupus work better.

Still, without a shadow of doubt, over recent years I have become much better at it and lupus features far less centrally and aggressively in my life than it was before. Thinking about how this has come to be; whilst there have been the ‘big milestones’ of change such as getting proper diagnosis and developing a more accepting and realistic attitude; there have also a few little, often seemingly trivial things that have really helped improve things significantly.

Here I list 10 of the ‘little’ things that have made big differences in making my life with lupus much easier :

1. DVD box sets
Ideal minimal effort distraction anytime, but especially when lupus forces any social life out the window and perfect for getting 'lost' in another world when you are fed up with your own! We’ve happily lost ourselves in Lost, 24, Six Feet Under and even The Barchester Chronicles! At the moment it’s The Wire ...

2. Help with cleaning
I was always embarrassed about getting help with cleaning (especially as, thanks to my Granny’s genes, I’m a bit of a cleaning-obsessive) and I felt it was something I should be able to do myself. Nonetheless, once the realisation dawned on me that in a situation where energy is such a precious commodity and that it’s a tragedy if every bit of it is used up on household chores and contributes to a worstening health situation; I felt a whole lot better about getting some help. Having someone to helps give ‘peace of mind’ at times when it starts to feel impossible to keep up with the pace of life. If money is an issue and regular domestic help is out the question, it's worth just getting someone in on an ad hoc occasional basis when you are really struggling, or seeing if a friend or family member minds giving you a hand around the house next time they ask if there is anything they could can do to help. It removes a pressure you could really do without.

3. Dispensing medicines for the fortnight ahead
When I started to put an hour aside at the beginning of the week, once every two weeks, to dispense my daily medicines for the fortnight ahead, it really allowed me not to have to spend so much time each day thinking about lupus whilst riffling with different drug boxes. Now I barely think about it at all as my medicines are ready to take each day, I just swill them down with my tea at breakfast and it’s as routine as brushing my teeth.

4. Getting email addresses for doctors
This was a revelation I stumbled across accidentally but once I did, I discovered that making contact with consultants and GP’s needn’t be a painful experience. If you can get hold of an email direct to your doctor it is great. You know your message will be read by the right person and you don’t have to waste hours having unsatisfactory conversations with moody medical secretaries, wondering if your message was ever passed on. Now I get satisfactory answers to my questions sent directly to my inbox without any hassle.

5. Disposable hand & foot warmers
If you have Reynaud’s: get some. Quite simply they are the best answer. They keep you warm, save you embarrassment and, all-in-all, in winter I never leave home without them.

6. Finding an excellent hairdresser
When you feel rotten, the last thing you need is to look rotten. Someone who can make you feel better about how you look, and who can help even when the situation is dire such as when your hair is dropping out, is worth their weight in gold. In terms of improving my wellbeing my hairdresser Kate is arguably ‘up there’ with my best consultant! It is also for this reason I am a huge supporter of Trevor Sorbie’s new charity ‘My New Hair’:

http://www.mynewhair.org/

7. Prescription prepayment card
If you live in the UK and have lupus – get one. I discovered it saves a fortune.

8. Doing something nice for someone else
Since lupus started putting obstacles in my way I’ve had to rely on the patience, kindness and generosity other people far more than I did before and far more than I feel comfortable with - after all, I always prided myself on being an independent kind of girl and someone who likes to help other people. I’m sure many a ‘loopy’ can relate to this. I now find that by consciously doing simple acts of kindness, however big or small, even when I'm low, helps ease this sense of imbalance in relationships a bit. I find that even something as small as smiling at someone warmly or looking people in the eye and thanking them properly, sending a card to a friend out the blue or listening to someone who needs to talk, makes me and them feel at least a small notch sprightlier, and such things are easily possible even when you are at a low ebb.

9. Yoga ‘Circle of Joy’ sequence
As you know, I believe yoga is highly beneficial for lupus and this easy little sequence of yoga postures combined with proper breathing can be done seated or standing and helps with all sorts of things that often affect ‘loopies’. It is calming and stabilising (try it next time you are feeling worried or panicky), and it reduces tension, loosens the shoulders as well as providing relief from headaches.

The only demo I can find is posted on You Tube by an Ozzy yoga school called Ten Toes, but remember it can also be done sitting on a chair or standing (and you are not obliged to have to have ethnic music and statues in the background!) :

http://www.youtube.com/watch?v=UzQ_qWAEQbo

You can also find it clearly explained in a book by Peter Van Houten MD & Rich McCord PhD called Healing Therapies for Headache Relief

10. Family Secret Santa
The festive season is approaching and whilst I abhor ‘bar-humbug-Christmas cynicism’ I must admit I do find it challenging from a lupus perspective. It gets so busy - dauntingly so; and comes with a high degree of pressure to fulfil lots of expectations; and, it’s all at a time when winter bugs are rife.

A couple of years ago my family started a ‘Secret Santa’ system, which in spite of my initial scepticism, has worked brilliantly. We each buy one significant present for another member of the family, either a surprise or a specific request, rotating each year. The result is, as well as reducing the stress of Christmas shopping for loads of presents, we now each get something we really want, as opposed to lots of what often ultimately becomes 'charity shop clutter', because your buyer’s entire Christmas budget is spent exclusively on you! I’ve got my sights on a rather stylish handbag this year ...

So, they are just some of the ways I've discovered how little life ‘tweaks’ can make big differences ... how about you?

Cautious Optimism

Perhaps one of my first pieces of advice to anyone newly diagnosed with lupus is to be highly wary of anything you read on the internet, especially regarding ‘miracle cures’. It is a simple fact that, as yet, a cure does not exist (if there was I’d be straight onto it – wouldn’t you?!) and there is no one natural, chemical or dietary ‘answer’ to SLE, whatever bold claims are irresponsibly made in cyberspace. The sad truth is such claims are usually made to get some money out of you – you have to buy a book or some pills or something - and I think they are designed, intentionally or not, to exploit people when they are feeling vulnerable.

It is with this in mind then that I am always very cautious about trusting new medications that are as yet unproven, but there are two developments on the pharmaceutical front that have been drawn to my attention that I feel may warrant at least keeping a cautious but hopeful eye over. This is because both drugs (‘Lupuzor™ and ‘Benlysta™’) have been developed and tested by what are I believe are well known and reputable pharmaceutical companies and both seem to be reporting very positive results in clinical trials

Check out:

http://www.londonstockexchange.com/exchange/prices-and-news/news/market-news/market-news-detail.html?announcementId=10279990

http://www.lupusresearch.org/about/press-room/press-releases/new-study-findings-represent.html

So, whilst there is still a long way to go and it is worth remembering drugs often fall down at the last hurdle revealing fundamental flaws, I think it is reasonable to keep our eyes open to the progress of both these trials. Anyway, at least let's keep our fingers crossed because it is always nice to feel there is a glimmer of hope, especially on those more challenging days. After all, as my personal favourite ‘dude of the moment’, Thich Nhat Hanh the Vietnamese Buddhist and activist, says:

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”

Beating the Bugs

More hints and tips for avoiding Swine Flu and other ‘nasties’

I wrote about my attempts to avoid infection back in January (‘Getting Bugged by Bugs’) but the issue is very much back on my agenda again for three main reasons:

1. I have just taken six weeks to get over a very minor cold. Although I thankfully managed to stem off any serious lupus symptoms with changes to my medication the cold definitely caused my immune system to spark, and therefore my lupus to stir. This is obviously a reminder of the potential that a more serious infection could have on a loopy’s wellbeing.

2. I’m pregnant

3. Next week I am off on a much anticipated girly trip to Ireland for a few days to visit a close friend who has just had her first baby, but I am rather nervous about the potential to catch something on the plane.

Maybe all this Swine flu fever is making me paranoid but not without reason. When I’ve been out and seen the number of people carelessly sneezing, coughing and ‘spraying’ without even attempting to keep their germs to themselves, instead of feeling compassion for their poor health as really I should, I feel like socking them one! The grossest thing happened yesterday when I was in the hospital getting my blood tests done. I saw a lady leave a toilet cubicle without washing her hands! It nearly caused me to wretch. I don’t care what she was doing in there: she needed to wash her hands! I am definitely behind the NHS’s ‘Catch it, Kill it, Bin it’ campaign:

http://www.direct.gov.uk/en/Swineflu/News/DG_177936

There are the obvious things and some other helpful hints I’ve been given on good authority:

Hand hygiene
Obviously – obsessively – I say no more.

Swine flu vaccination
The (reliable) word of authority is that loopies who are immune-suppressed should get the Swine Flu vaccination. The benefits outweigh the risks.For full details see:

http://www.lupus.org.uk/news/news_swineflu.htm

And it’s not just for you. If you are immune-suppressed your ‘household contacts’ are also eligible to be vaccinated as a priority in Category 3 of the NHS Swine Flu Vaccination programme. Needless to say, as soon as it arrives in the forthcoming weeks Tony’s straight down there!

For UK loopies, full details of the NHS Swine Flu Vaccination Program and the Risk Categories identified for priority are clearly outlined here:

http://nds.coi.gov.uk/content/detail.aspx?ReleaseID=407719&NewsAreaID=2&HUserID=893,776,884,851,780,684,710,705,765,674,677,767,684,762,718,674,708,683,706,718,674&ClientID=-1

Being immune-suppressed and pregnant I fall into more than one category.

Avoid touching your face
The flu virus has to get into the body somehow to grow and the most effective way is through the nose or mouth. Any infection carried on your hands is automatically transported to your eyes, nose or mouth every time you touch your face.

After having been given this advice a couple of days ago I've discovered that that this one is much easier said than done. Try it for yourself. I’m hoping it's a case of 'practice makes perfect'.

Vicks First Defence Nasal Spray
I advocated this (albeit with a degree of scepticism at the time) in my last post on beating infections and I do again with a bit more confidence as I’ve been told that it is far more effective than face masks, which can in fact make matters worse. (Yes, I'd got to the point where I was seriously considering wearing a face mask on the plane - I'm sure my travel companion Lorna will be relieved to hear I'm opting for First Defence instead!). The blurb says it works by "trapping the cold germs, making them harmless and helping your body to get rid of them naturally". Apparently the key is to use it properly. The way to do it is to be like Bill Clinton - don’t inhale! Allow it to trickle either down the back of the throat or back out your nose (lovely!) rather than inhaling it into the lungs where it has no affect. The key is it should coat your nasal passage.

http://www.vicks.co.uk/first-defence/nasal-spray/

It’s at least worth a try, especially on my plane journey.

Hot drinks
Drinking six to eight cups of fluids a day flushes mucus down into your stomach, where digestive juices destroy the toxins. Keeping the bodily fluids moving quickly out of the body gives a virus less chance to find a cosy place to grow and spread. Acidic drinks, like citrus juices and tea with lemon, also help to keep viruses at bay.

Another very good reason for putting the kettle on right now!

Stuck Insomnia

Since I last reported in I am still a touch under the weather. It is because the ‘not-too-awful-in –itself’ cold is still lurking and so causing a few lupus flare ‘warning sign’ symptoms, but my medication has been adjusted and thankfully seems to be containing things on the whole. However, an old bugaboo has reappeared: insomnia. In the past I have suffered badly with insomnia and really struggled to get on top of it. Thankfully this time it just seems to be the odd night here and there, but its reappearance is an unwelcome reminder of past experience.

Insomnia comes in different shapes and forms from periodic wakefulness, difficulty falling asleep or waking too early. For me it is a case of waking up at a very particular unearthly hour (currently 3.00am) almost as if I had a built-in alarm clock and being unable to sleep for the rest of the night until it is just about time for the real alarm clock to go off again – grrrr. When ‘Tyler Durden’, the unhinged antagonist of the film Fight Club, says “when you have insomnia, you’re never really asleep and you are never really awake” I believe he hits the nail right on the head!

Insomnia can be attributed to a number of individual things or a combination of them. To start with it is arguably a symptom of lupus itself. So yes, the inability to get nourishing sleep in a disease where one of the key features is lethargy, exhaustion and fatigue is yet another of its cruel paradoxes! Insomnia can also be a side-effect of medications taken to control the disease, Prednisolone in particular. It is probably no coincidence that my recent disturbed nights coincided with an increase in my steroid dose. I often find that this happens when my dose is increased, but that I gradually adjust to it and my sleeping pattern begins to settle again. Other possible causes of insomnia are anxiety, stress and depression which are not uncommon amongst loopies, as again they can be either symptoms of the disease itself or natural psychological responses to it. Whatever is at the root of it, it is something that seems to give grief to a lot of loopies.

I have thoroughly explored the whole gambit of practical and behavioral solutions all of which play an important part in helping ease the problem all of which help to some extent or another.

At the top of my list is (you won’t be surprised to hear!) is yoga. Because it is a holistic discipline it works on balancing all the bodies systems, so whether the insomnia has physical, mental or emotional origins it can effectively be used to prepare the body and mind for healthy sleep. To achieve this there are a number of yogic ‘tools’ that can help. These include physical postures (known as ‘asana’), breathing exercises (‘pranayama’) and meditation. I promise I will write in greater detail on ‘Yoga and Lupus’ soon, but in the meantime all I can say is find yourself a good yoga teacher now, and you will discover the benefits for yourself which will become apparent almost immediately …

Beyond this there are some other well documented ‘tried and tested’ things to do and others to avoid that I find help including: using warming aromatherapy baths / lighting aromatherapy burners / candles (my immeasurably kind Mum recently bought me Molton Brown’s ‘Cedrus Temple Soother’ and ‘Cedrus Room Aroma Rocks’ both part of their new ‘Sleep Body Therapies’ range which I have found good: http://www.moltonbrown.co.uk), comfy bedding and a slightly open window as I find fresh air helps enormously so long as I’m not cold, avoiding overdoing it with alcohol and caffeine (doable so long as I’m allowed my morning cuppa!) and doing something to clear and relax my mind just before I put my head down, for example relaxing breathing exercises, reading a chapter of a good book or flicking through a magazine (but avoiding anything that might be disturbing or challenging as these can awake the mind which is a bad idea before bed). And, as sad as it might sound in a ‘New Agey’ kind of way, I have also got a Sea CD (ie a CD recording of sea waves that the manufacturer describes as “timeless, rhythmical and ultimately soothing”: http://www.global-journey.com/nature.html) that at times has been effective in helping lull me off to sleep by kidding me I’m lying on a beach somewhere very nice and far, far away!

However, ultimately the thing I possibly find most useful is the thing that seems to be key to most aspects of Living Well with Lupus – that is ‘wrapping your head around it’ which is to modify the thoughts and perceptions I have about it.

I once had a session with a Cognitive Behavioral Therapist from which the most useful thing to emerge was learning how to challenge and actively modify some of my thoughts and concerns about insomnia. It was pointed out that the significance of worrying about sleep (or lack of!) is part of the problem and makes the whole thing a damn sight worse.

For example, when I explained “I’ve always needed a lot of sleep. If I don’t get at least 8 hours, I just don’t function” I was invited to question this belief. I had to confess it was possible that the amount of sleep we need might vary from time to time, and that there have been lots of days when I’ve surprised myself and managed to get by successfully in spite of a bad night’s sleep. Acceptance is also key (and very yogic!). I learned not to allow myself to spiral into negativity on those occasions I can’t sleep, instead I think “OK, I’m not sleeping right now so I’ll get up and make myself a chamomile tea and enjoy some time for myself. Maybe I’ll do some yoga relaxation”. Another helpful thought I now have is “as I’m a restless tonight that usually means I’ll get an extra good night tomorrow night- excellent”.

I also used to avoid daytime napping in the false belief that by not sleeping in the day I’d sleep better that night. I have now learnt it doesn’t work that way. Sleep is like money in the bank: you should add credit whenever possible so there are extra supplies for ‘rainy days’. So now if the opportunity for an afternoon nap arises I try and take it without guilt or concern.

After all, as the comedian Carrie Snow pointed out “No day is so bad it can't be fixed with a nap!”

Wishing you all a 'bon nuit' x

The boy that cried wolf

Having recovered from a cold I picked up, the lupus has done its usual and put in a bit of an appearance: a new rash on my back, ‘hurty’ patches on my feet and the base of my neck, some stiffness and aches in my hands, as well as the revival of the usual mouth ulcers and fatigue and perhaps most worryingly for me, the odd headache. I have also developed a kind of burning stomach sensation that I suspect is just a pregnancy-heartburn-reflux-thing but I am concerned to confirm this as my steroid dose has increased and this has caused problems with stomach ulcers in the past.

I have taken sensible lifestyle precautions such as cancelling appointments and getting plenty of rest but symptoms weren’t showing signs of improvement so last night Tony (my hubby) and I were debating what course of action I should take: should I contact the lupus consultant?, the specialist obstetrician?, the midwife team? or, (my suggestion) “leave it a bit longer and see how it goes until next Monday when I have a my next fixed appointment - after all, things might 'just get better'?”

The last suggestion didn’t go down well with Tony, who pointed out that "the ‘leaving it to see if it sort itself out strategy’ has often proved disastrous for us in the past where, far from getting better, symptoms have spiraled out of control and required dramatic treatment that might never have been necessary if we’d just ‘nipped it in the bud’ in the first place!"

In my defense I reverted to the words have popped out all too often in recent years “I just don’t want to bother them unnecessarily … I just don’t want to be like the ‘boy who cried wolf’”

Even just after I said it I knew it was very un-Living Well with Lupus

Drawing on the lupus / wolf connection Tony retaliated “But you are not making it up! It’s not like you are a bored shepherd boy with nothing better to do (!), ‘the wolf’ actually has confronted you (and does so a lot of the time) so you are justified in asking for help whenever it appears”. And of course, he was absolutely right.

At the end of the 'Boy that Cries Wolf' fable Aesop spells out the moral. I guess the moral of this story is that lupus is a REAL wolf and there is absolutely no shame in asking for help ... in fact it is the wisest thing to do.

Right. I'm just off to make that phone call now and if needs be, I urge you to too.

Avoiding appointment disappointment

I feel like dancing on the rooftop and shrieking with joy because something so strange and marvellous has happened. I have noticed that recently I have consistently started leaving medical appointments with a feeling of satisfaction

Yes, these days when I leave the consultation room after appointments with either my consultants or my GP I feel I have been heard, believed and given the best professional help available. Now, whilst I understand that your average person may not feel this is worthy of such a reaction of delight, because one might reasonably assume that this would not be too much to expect from a medical appointment, for many a ‘loopy’ this is often not the case.

Thinking back I literally get a shiver down my spine when I remember certain medical consultations. Other memories simply enrage me. There were numerous problems: feeling rushed, feeling that the doctor was distracted (one GP even took a personal call on her mobile in the middle of my consultation, so I sat there trying to come to terms with my new chemotherapy drug regime I was on, while she merrily planned her social arrangements for that evening with a friend!) or otherwise feeling the medical professional I was consulting was clueless about my condition. Feelings of intense frustration were also commonplace, especially when I was for a time undiagnosed after being diagnosed, only to be finally and satisfactorily diagnosed once again. But the worst thing of all I felt during these inadequate consultations was disbelieved.

When have enormous respect for someone because of their professional capacity, if they appear to doubt you, it is easy to doubt yourself. There were times when I started to believe that maybe I was just a hypochondriac as the attitude of certain doctors seemed to imply; maybe I was just imagining the headache and making a fuss about the other symptoms. It is odd to feel grateful for a seizure or for finding oneself unconscious in Intensive Care, but in some ways it did me a favour – it vindicated me, it got doctors to take me seriously and it confirmed once and for all I was no joker.

Having given the matter much thought, I have realised that there are a number of barriers which give rise to unsuccessful medical consultations and that blame lays at both the doctor and the patients’ door. I believe there are very few doctors who are truly ‘bad apples’, but there are a some whose bedside manner leaves much to be desired and rather more than there should be whose knowledge of lupus if very limited. This doesn’t have to be a problem unless they are one of a significant number that is dangerously constrained by professional ego. An otherwise decent doctor who is not fully au fait with the condition but who is open to learning is one thing, but one who is ignorant and arrogant is quite another; they can be very patronising and even dangerous. I have come across them all over the years.

Still, I recognise that patients can also make matters worse for themselves. Unless we allow ourselves to accept in our hearts that lupus is unpredictable, difficult to read and currently incurable we can go into our appointments expecting our doctors to be magicians who ‘wave their magic wands’ and instantly prescribe us the answer to all our problems. Sadly, the truth of the matter is there is no ‘one size fits all’ when it comes to treating lupus and doctors have to be given a bit of leeway. When I found a consultant that I felt respected me and was constantly endeavouring to try and help me find a way forward, I accepted a lot of what we had to do together medicine-wise was trial and error. Nothing he could do or prescribe was going to be perfect and provide a complete cure without side-effects, but with much ‘tweaking’ here and there, we were going to find the best possible solution.

This requires good communication which is another thing vital to getting a positive outcome from meetings with your doc. There have been times when I have had so much invested in a particular medical appointment, been so emotional and felt so much of my life rested on it that I have gone in and (quite uncharacteristically) found myself nervous, freezing up, forgetting to mention some of my key symptoms and to ask all my questions. I essentially turned into a passive, simpering ‘yes’ puppet! Realistically, when I was like this, how could any doctor be expected to deliver what I wanted and needed?

So what can we do to avoid these hellish experiences and start getting the best from our contact with the medical professionals? I have turned some of the things that I feel have helped me into the following list of tips

• Have all the relevant information about YOUR medical history to hand to help enlighten doctors you are meeting for the first time and to validate what you are telling them (recently, in an appointment of mine, a copy of recent blood tests, an old MRI scan and a letter from another consultant proved very handy)
  


• If you are going to a medical professional whose specialism is not necessarily lupus (e.g. A&E department, a GP) it can be handy to have some general information on the condition
  
• However infuriated you feel ... never get angry. This is guaranteed to piss-off the doctor, who will instantly write you off as ‘neurotic’!
  


• Be persistent
  

• If it’s not working, CHANGE doctor or ask to see someone else. A lot of people don’t seem to think this is an option, but it is and you can. It may mean a bit of compromise like travelling a bit further, but believe me it’s worth it. After suffering a GP-practice-from-hell I switched to a GP-practice-from-heaven and haven’t looked back. Why I didn’t do it sooner amazes me ...
  


• If you find a consultant / GP you like and feel you can trust, stick to them like glue – they are worth their weight in gold
  
  
• When you are too ill or emotional to fend for yourself or just not up to explaining, take someone with you as your ‘spokesperson’. In some of my darkest hours the formidable combined force of my Mum and Tony was enough for any doctor to reckon with ... but they got the results
  


• Show you are prepared to be reasonable and build a good rapport
  

Let’s not pretend that all this is easy. It has taken me many years and much work and support from my husband and family to get to a point that I’m happy with my medical care, but it is worth it. After all, getting the best from your doctors and consultants is vital to living well with lupus.

Taking the ‘ow!’ out of mouth ulcers

Mouth ulcers are a common symptom of lupus and one that for something so small can cause a great deal of misery

The mouth ulcers I get range from painful white spots on my inner lips and gums to large white patches covering the palate of my mouth (as in the picture) or inner cheeks of my mouth. I have tried various products on the market as well as some prescribed, so here are my top tips:

1. I find gel products slide around and don’t stick to the ulcer so opt for liquids, sprays and pellets that stay in place

2. Products I find helpful are:

Ambesol Liquid is an old favourite of mine as it numbs the pain entirely and allows you to eat and talk without pain. The drawback is that it really stings when you apply it, so prepare yourself!

I find Corsodyl Mint Mouthwash helps when it is impossible to brush my teeth properly as it maintains oral hygiene and prevents infection and gum disease, as well as easing some of the soreness. I have also just discovered Corsodyl Spray which is great for zapping ulcers that are lurking in hard to reach corners of the mouth

3. Certain foods should be avoided as the pain is eye-watering – lemons and tomatoes spring mind

4. Although they are a pain to use, when things have been really bad prescribed topical steroids have worked for me

5. Desperate times call for desperate measures: sometimes drinking through a straw, lukewarm soup, ice-cream, yogurt and jelly and avoiding hot drinks can be your only option

If anyone else has any good ideas, I am always on the lookout so let me know.

The Cool Way to Staying Hot

In the heat it can be hard being a loopy. This year I found a better way of being...

As I said before, my efforts in the past to protect myself from the sun have been somewhat half-hearted. I realise this was probably due to a vain desire to turn from a ‘pasty Londoner’ into a lovely ‘honey-brown babe’ (well you can but dream!) and a misguided belief that the sun didn’t affect my lupus much.

I guess some things you have to learn for yourself - the hard way. Looking back, the reality of too much sun exposure for me has not only been a complete disaster in terms of my vanity (!), but also detrimental to my health. A deep crimson ‘moustache’ rash (visible in one of my pictures) that lasted in excess of six months after the holiday in question (that only disappeared when I was given very serious treatment in hospital when my general condition had become dangerous – potentially all caused by the same holiday), a long lasting brown blotch on my forehead that looked like an expansive country sprawling across a globe, itchy rashes on my body and a gelatinous lump on my eyeball – enough to make you squirm - are all some of the delightfully visible physical signs I have had when I’ve had to too much sun. Not exactly the ‘beach babe’ look then! Other non-visible symptoms include headaches and lupus fatigue.

The entertaining picture at the top is an example of just how unglamorous my attempts to catch a few rays ultimately became. On a holiday in Sardina a few years ago, after too much sun, no hat and no sun umbrella, on a beach with no shade and with a terrible headache Tony ended up lending me his t-shirt, wrapping me in a sarong and using an umbrella to shade my head. As you will, see I ended up more like a beach tramp than a beach babe!

I was therefore rather pleased with the more effective way I managed the sun this year. Firstly, we consciously decided to book our summer holiday (to Umbria in Italy) in late spring to avoid the truly scorching weather – although I have to say it was still hotter than we were expecting. Like most women I still hoped to look nice while I was there and even better when I got back. To address this I did a few things that worked very well.

1. As I often feel a bit ridiculous and decidedly un-‘continental’ under functional oversized hats and sunglasses, this year I put a bit of effort into developing a more stylish hat / sunglasses combo– so while I was protected from the sun I also felt stylish (or at least not like a complete idiot!)

2. AND most importantly I developed a routine that meant I still managed to return from holiday with a nice sun-kissed look! I achieved this by following every morning application of high-factor sun cream with a layer of fake tan. Just as a natural tan does, the fake tan seemed to build up over the time we were away. Although I admit it did require a fair bit of effort, it didn’t seem to matter because we were on holiday and so I had more time and inclination. It meant I returned with a holiday glow that looked as if I’d done hours of dedicated sunbathing without having to go to all the effort (and if the truth be known I’d far rather be snoozing in the shade or reading a good novel or magazine anyway – after all, the sun is so uncomfortable)

3. Another useful thing I did was to take siestas during the day at the same time as the locals to avoid the hottest part of the day and I found beautiful trees to sit under, so I could still enjoy being in the sun without the problems.

I’ve come to rely on a few reliable products that I’ll recommend in case you want to give them a go:
1. Clinique Super City Sunblock SPF 40 – a permanent fixture in my handbag
2. Soltan Mini Spray SPF 50 – I find this great because it’s small enough to carry around and because it’s a spray you can put it on ‘hard-to-reach’ places for yourself (from Boots)
3. A lip balm with sun block – I admit I forgot my lips this year and burnt them (I learnt not to forget eyelids last year, behind the ears the year before!), so have started using Elizabeth Arden’s Eight Hour Cream Lip Protectant Stick SPF 15 that my Mum bought for me which seems pretty good
4. Sunglasses with UK protection (to protect your eyes and avoid the ‘gelatinous’ eye thing)
5. Hats, hats and hats and caps – to go with any outfit – ‘Accessorizes’ has a good selection

Please let me know if there is anything else I should be onto or doing...

(By the way, if your lupus is flaring I’d recommend staying out of the sun entirely if at all possible and keeping yourself as cool as you can. From my experience, even just the heat makes you feel more unwell than ever and I know other loopies have said the same)

The four 'P' approach

I have been having a bit of an 'amber' time recently and am trying to work my way through some more health difficulties and medical conundrums associated with the old lupus. This is not helped by the fact things are busy right now, not least because we are planning a surprise party for my Granny's 90th birthday which is great fun, but involves a fair bit of work.

I was therefore really pleased to hit upon a very insightful tip when I was resting yesterday, given in Lupus Now by another 'loopie' in America, called Ann Utterback. It struck me as a very succinct way of expressing the key to Living Well with Lupus. It gave me the focus I needed to get back on track mentally during a moment when I was feeling rather despondent so here it is in case it is also of help to anyone reading this:

Practice the four P's:

1. Plan

2. Prioritise

3. Pace yourself

4. have Patience

I think this is excellent advice because it is simple and clear yet it captures everything that is key to working around the lupus.

Incidentally, I recommend Lupus Now in general. It is the magazine produced for loopies and their families by the Lupus Foundation of America. It was recommended to me by one of the loopies that took part in our research (thanks Dierdre!) and I now subscribe, although you can now access it online too: http://www.lupusnow.org/ I find the articles are relevant and offer lots of useful information and advice.

Anyway, I am off now to dot a few 'Four P' post-it notes around the house to remind me to plan, prioritise, pace myself and be patient, so I won't go wrong.

Getting ‘over the moon’ and weight gain factor

I’ve always had a healthy appetite but when my steroid doses increase I turn into nothing less than a mean eating machine. I am only 5 foot 2 and I often feel I could eat my husband under the table (not literally!): he is over 6 foot and a big lad. Personally, I find it is not exactly hunger though; oddly it’s just more a constant urge to eat. Weight gain is common amongst those taking Prednisone (especially with doses over 10mg) and as I’ve highlighted this includes a fair few ‘loopies’. The reason for the weight gain is that Prednisone causes the body to retain sodium and lose potassium. This combination can result in fluid retention, weight gain, and bloating. Furthermore, an increased appetite is another significant side effect for many.

And, as if ‘unfair’ weight gain (as I see it in these circumstances!) isn’t bad enough in itself, Prednisolone often causes the redistribution of fat, which makes any amount weight gain even less tolerable. The weight gain from Prednisolone tends to be located in the face (‘moonface’), back of the neck (‘buffalo hump’), and the abdomen (‘truncal obesity’). Aren’t these very words alone enough to make you cry!? To give an idea I have showed a ‘before’ (left) and ‘after’ shot (right) to demonstrate a bit of my moonface, but to be honest, I was reluctant to have too many photos taken when things were at their worst!

I continue to struggle, but have so far been relatively successful at keeping my weight down, although there are times when things have been worse than others in this department. Still, here follows the best advice I can give that has so far helped me.

• Firstly, Coldplay have it right when they croon “♪♪ nobody said that it was easy ♪”. It’s not. I guess this applies to many things in life, but certainly when it comes to trying to keep a waistline when you’re on steroids. So really that is the first lesson. If you want to keep your weight down, it is something that you have to permanently be aware of and act accordingly to avoid it.


• Then there is the obvious stuff: exercise and healthy diet. Obviously don’t go on a diet. They never work, at least not long term. Just make your personal diet a healthy diet. I don’t really need to spell it out as you’ll have heard it a hundred times before, but just in case I’m talking about basing it on, fruit, veg, beans, fish, rice, noodles, pasta, lean meat, tofu and lots of wholemeal stuff. Of course the odd blow-out and occasional treat here and there is a definite must, but rarity only heightens the enjoyment.


• And then there is my mantra: breakfast, breakfast, breakfast and especially anything with oats. I’ve said it before; I’ve just said it again. I won’t bore you any more with this
  
• No one wants a boring diet and I reckon the key to eating healthily but exceedingly tastily is to ‘chop till you drop’. Odd as it first sounds, if you learn to enjoy chopping it helps enormously, because once it is done you can make delicious food that is not only tasty, but not too bad for the waistline. Then if you find you need to eat a mountain, it doesn’t have quite such visible consequences. The chopping bit used to be what put me off cooking proper food and turn to quicker less healthy options. Weirdly enough, I’ve crossed the pain barrier and now I actually find it relaxing. If I sit and chop herbs, peel and slice veggies and fruit, grate lemon zest, ginger and nutmeg, mix bowls of homemade treats to the doldrums of my favourite music or radio shows I find a kind of inner ‘chi’ (one of the first pieces of key advice at the beginning of this whole Living Well with Lupus thing that you need to find your inner-hippy!)


• Someone in our research told us that if you have problems with arthritic hands (something I am grateful to have recovered from now but I had it for a while) there are implements to help with cooking and chopping that are worth investing in. For example, I like the look of this stylish ‘easy grip’ utensils set:

• http://www.allegromedical.com/daily-living-aids-c519/easi-grip-magnetic-rack-p500930.html
  
  My food processer also has attachments that are for slicing and grating.

• I find if you a chop and peel a lot of the things you often use in one sitting and put them in the fridge or freezer, it means is easier to make something tasty and healthy on ‘amber’ days, likewise with meals that you make too much of. If you make a whopping fruit salad with only your favourite fruits (illuminate the boring stuff) and leave it in the fridge it is great to have to dip into throughout the week.
  
• Try to keep only healthy snacks in your cupboard and on your person so when hunger strikes you can only but satisfy it wisely
  
• And here is my personal secret tip: when you get steroid munchies and you can’t help but eat in between meals, eat anything (healthy) that crunches: carrots, apples, celery, popcorn, rice cakes, radishes, sugar snaps, whatever - so long as it’s crunchy. This is just a personal discovery and I cannot claim it is backed by any scientific evidence but it certainly worked well for me in that I didn’t pile on too much extra weight. I reckon it might be because crunchy foods take more effort to chew, so whilst they satiate the compulsion to eat, a certain degree of energy is expended in the process itself simultaneously burning calories and giving the facial muscles a good workout – great for the old ‘moon-face’.

Anyone tries the crunching method I’d be really interested to know how it works for you. Also, any more ‘hints and tips’ you can post would be most welcome by me and others I am sure.

Prednisolone the friend and foe

Many a ‘loopie’ has to take Prednisolone at least at some point and often long-term, to control their symptoms - me included. If you don't take it now there is a strong likelihood it may be necessary at some point.

But Prenisolone introduces yet another lupus paradox: the very drug that saves your life (and let’s face it, regardless of what you feel about it, it does seem to help keep things in check) simultaneously messes you up in one way or another. The only way to describe my own feeling towards it is most definitely as a ‘love / hate relationship’ and I have found this is true for others too.

The alarming potential long term side-effects such as osteoporosis, diabetes or stomach ulcers are one thing, but the future is unknown and we can but hope for the best. Nonetheless, we are still able to take the best measures we can to help avoid such outcomes, such as taking calcium supplements, eating a healthy diet and taking medication to protect the stomach lining.

But it seems the more immediate and pesky symptoms that plague us in our daily lives are the ones that really bother us and give us a sense of righteous indignation. I’m talking insomnia, acne and weight gain for example, not to mention other common nasties like depression and / or ‘mania’. I can’t help but feel any of these is like adding insult to injury!

Still like it and/or loath it, until our dream ‘wonder cure’ is invented (and I am optimistic that one day it will) many of us have not much choice but to live with our ‘friend and foe’ Prednisolone if we want to keep the lupus symptoms under control. All we can do is approach it in a pragmatic way.

I suppose it goes without saying, first and foremost any side-effects should be discussed with your doctor, then take on board their advice. Beyond this, in order to reap the benefits of prednisolone, you have to seek out ways to cope with the side-effects and manage them as best as possible. My success in achieving this has varied depending on the particular side-effect in question. For example, each time I think I’ve cracked insomnia (the kind where after going into a deep sleep you wake up at an unearthly hour say 4.00am, as if you have an inner alarm clock programmed, only to finally drop off again 5 minutes before the real alarm goes off) for it to come back and start plaguing me all over again, so I am still working on that one. With others I’ve had more success. So it is my intention to do a post looking at each side-effect individually and considering how best to tackle it. I am going to kick-off with avoiding weight gain as this is the one that seems to affect most people to some extent and certainly gives rise to the greatest upset. Watch this space.

Stop to Go

I need to get this down in black and white (or more accurately green and white in this instance), so it’s ‘out there’ for everyone to see and to ignore it would be entirely hypocritical on my part. To 'practice what you preach' is after all, only right.

The funny thing is that in my heart of hearts I know that this lesson, if learnt properly, is one of the most fundamental ways to ensure you can optimise life and get on in spite of lupus. I’ve been told it by others: doctors and loopies alike, and even learnt it the seriously hard way for myself and I think I may have already written abou it on this blog before, but I just seem to lose sight of it every so often and bugger it up (last Friday for instance). I wonder, does anyone else have this problem?

Anyway, I include it now as a permanent ongoing reminder to myself. As with so many things appertaining to lupus, there is a definite element of paradox at its heart but remember this, and you will thrive much better:

When lupus hints that it is about to put in an appearance, the best thing to do is nothing. In other words the best action is non-action. That is stop and rest; physically, mentally and emotionally. Cancel what you had planned. You’ll be surprised (as I invariably am) that in spite of what you might believe, in reality there is actually very little that really just cannot wait. If on the other hand, you choose to ignore it, it will just get worse and suddenly everything has to wait, like it or not. This can be much more long term. Listen to your body and never try to push on regardless. Ironically, the less you do now, the more you will be doing in due course.

Some highly important little sub-points to be remembered:

• Although it might not be planned or especially convenient, relaxation is always a wonderful thing so be flexible, and remind yourself to just enjoy it and then you are still living well
  
• Good old Richard Carson reminds us we should “let go of the idea that gentle, relaxed people can’t be super achievers” - oh yes we can!
  
• Gently does it. Once the rest has done the trick and you have restored some of your ‘va-va-voom’, resist the temptation to go crazy otherwise you’ll find yourself trapped in a vicious circle

What wise words. Now all I have to do is just make sure I take heed ...

Shabba Remedy

If I’m honest, I found the idea of ‘pet therapy’ rather creepy because for some inexplicable reason it made me think of the well meaning, but slightly malodorous and decidedly odd ‘cat ladies’ who used to live up my street when I was a kid, who shared their home with upward of 10 local stray cats. I say no more!

So it was with pleasant surprise that pets (dogs in particular) were mentioned in our research by more than one very normal and lovely seeming ‘loopy’, as being hugely helpful in making things better for them. Whilst I acknowledged this anecdotally and it was highlighted in our report, I have to confess it was not something that I gave any serious consideration to in relation to myself.

Whilst I love dogs and grew up with them as a permanent and much loved part of my childhood, Tony and I decided that we wouldn’t want one of our own before we had children. This is because we both see a dog as an integral part of childhood, so in our minds, dogs and kids kind of come together. Like children, pets come with their ‘drawbacks’; not least mess, fur, expense and responsibility. And let’s be honest, they impede on the much valued freedom of a pre-kids couple. So we have always had the attitude, let’s wait for kids to be on the agenda before we get a pet: a kind of ‘in for a penny, in for a pound’ mentality.

It was therefore mainly out of love for my parents that I agreed to house and care for Shabba, my mum’s precious Labrador, while she and Dad were away on holiday. Now, don’t get me wrong, I love Shabba but he has always been a dog with significant ‘issues’ and not a pet for the faint hearted! If you have read Marley and Me by John Grogan you will get the idea (if you haven’t, you should!), although thankfully he has chilled-out somewhat in his old age. So, whilst I was more than happy to help, I thought it was going to be a bit of a hassle.

The funny thing is Shabba has now been with us here for a week, and not only am I really enjoying having him to stay, I have to confess I have really noticed the benefits of his presence on my health and mood.

Over the last couple of weeks I have been having a bit of an ‘amber’ patch (hence I haven’t blogged recently) – I’m not completely ill (red), but not exactly well either – I guess many of you ‘loopies’ will know what I mean - but Shabba’s constant cheerfulness and general agreeableness has really helped lift me! Obviously gentle exercise is also something proven to improve lupus symptoms, so having Shabba to stay has also meant I have been getting out in the fresh air and getting some exercise, at a time when I would have been inclined to ‘hole up’ and stay in. Dare I say it, all this sounds like therapy ... pet therapy at that!?

In search of explanation I found this which seems to make a lot of sense:

http://stress.about.com/od/lowstresslifestyle/a/petsandstress.htm

It seems even the established medical profession see something in it. If I manage to persuade my husband to let me get a dog of my own (unlikely: he is as stubborn as me) maybe I’ll see if I can have it added to my prescription!

See:

http://www.guardian.co.uk/society/2005/aug/08/health.uknews1

I am also glad to say that if I was ‘prescribed’ a dog, a good friend of mine has promised to let me know if I show signs of turning into a weird, eccentric, ‘pet lady' whose dog is patently a child substitute (signs of this include cooking meals for pets or dressing them in any kind of clothing – and bows in their hair are definitely out, even jewelled collars are borderline in my book!) to ‘nip it in the bud’ ...

Anyway, on a more serious note, all this just goes to show that it is worth considering everything, and that anything is worth a try - even if it is not something that you would naturally think is for you. You never know, it could work out better than you think.

Solving Energy Crises

As the environment is such a topical contemporary issue at the forefront of social thinking today, it permeates the media and politics everywhere. Now, I’d never describe myself as an environmentalist and I am certainly no ‘eco warrior’ (although all due respect to those who are!) but it would be impossible to be oblivious to the fact that the world is facing an energy crisis and that finding ways of saving energy and finding new ‘alternative’ energy sources is a necessary modern preoccupation.

This got me thinking. On a personal level, energy (or lack of) is something that I have always been preoccupied with too. I think it’d be fair to say that most ‘loopies’ have issues with low energy as it is one of the more universal symptoms of lupus that can even be problematic when all other symptoms are under control. Doctors find it difficult to treat and ‘loopies’ find it hard to live with. I find it hard to explain to others because when you say you feel ‘tired’ it just doesn’t cut it and sounds a bit lame. In reality, the word ‘tired’ just isn’t right and that’s not only because it’s a gross understatement, but because it doesn’t accurately depict the unhealthy feeling I am trying to convey. I don’t think there is a word for it or if there is I don’t know it, but I guess if I was being more accurate, I’d describe it more like heavy waves of feeling inexplicably ‘drained’ or as being peculiarly ‘bled dry’, ‘dissipated’, ‘consumed’, ‘siphoned’, ‘sucked’, ‘spent’ or ‘depleted’, or all of the above! Perhaps ‘loopies’ could say it’s like suddenly ‘all their get up and go, has got up and gone’. But all this would be a bit too much to go into.

But I diverge. The point is: managing this personal ‘energy crisis’ is important to living well with lupus, as doing so effectively enables us to get on with life more as we would wish, and I have found that it has been helpful to use the two approaches being applied to the global crisis – energy saving and finding alternative energy sources – to think about ways to approach my own.

On these lines, here are a few examples and tips that I’ve discovered help me manage my energy, but there are many more:

Energy Saving

As energy is limited, spend it wisely …

• View energy like money in a bank – you only have so much so decide carefully how you are going to spend it
  
• Rest is like credit so remember to use it to ‘pay back’ what you take out – a big overdraft leads to trouble


• If you think it is worth it, a strategic ‘blow out’ is OK every so often – it’s good for the soul!

Other helpful energy savers I use include:

• Shopping and banking online
  
• Getting domestic help when necessary (sometimes paid and sometimes from kind family and friends)
  
• Learning to say ‘no’ when things are getting too much (in the nicest possible way!)
  
• Resting well – find the right place and designate the time, and make sure others respect it. The quality of rest counts.
  

Alternative Energy Sources

• Yoga

• Original Source Mint Shower Gel: http://www.originalsource.co.uk/


• Neal’s Yard Remedy to Roll For Energy:
  http://shop.nealsyardremedies.com/product/1689/Organic_Remedies_To_Roll_For_Energy
  
• OK, caffeine in moderation, but they said in the war ‘tea revives you’ and I am a great believer! I live by ‘a nice cup of tea’.
  
• If I am feeling whacked and have to suddenly pull myself together, I find brushing my teeth is a good instant ‘quick fix’ boost
  
• Eating breakfast. It is not called the most important meal of the day for nothing! No excuses: make time! If you do it every day you will wake up hungry looking forward to it. Makes a real difference to energy levels throughout day. Anything with oats is especially good. Using the environmental analogy this can be seen as a highly sustainable energy source

And finally, remember that as well as saving and boosting physical energy, boosting emotional energy helps you get by. For me, this could be nattering to a friend on the phone or making something nice for a loved one (yogurt cake and flapjacks are my specialities). Equally, avoiding people who drain you emotionally is a good idea – energy is too precious to waste on negative people.

I’m never sure if anyone reads any of this (!), but if you are I'd really appreciate any more ideas for ‘energy savers’ or ‘alternative energy sources’ so please feel free to leave any in comments!

Getting bugged by bugs

I have been desperately trying to avoid getting an infection this winter but at this time of year when bugs are rife, simply leaving the front door feels like a health hazard.

Obviously, everyone is keen to avoid sickness bugs, coughs, ‘flus and colds, but for your average ‘loopy’ this time of year is a nightmare. Not only are we more prone to catching things anyway due to the abnormalities in our immune systems, the drugs many of us take open us up even further to infection (recently my drugs went into overdrive and virtually cancelled out my white blood cells entirely). And, if and when we do catch something nasty, it can lead to a lupus flare. All in all, it’s not great!

After bad experiences in the past and a better spell of health recently, I have been really determined to try and avoid catching anything, but this is easier said than done.

I tried putting myself in a kind of ‘quarantine’ by staying at home but could only keep this up so long: there were things to be done, places to be and people to be seen. Even when I did manage to ‘hide’ at home problems arose. My husband came home from work reporting stories of a whole host of unpleasant bugs flying around his office. One ‘loopy’ friend, who took part in the research, told me she was having a similar problem. In fact when her husband developed a cold she took to wearing a mask (usually used by decorators to avoid toxic fumes) to protect herself, and last I heard she was contemplating goggles too- she wasn’t sure what the postman thought when she forgot and answered the door in her protective wear!

When I did leave the house it was virtually impossible to find anyone who didn’t think they were infectious in some way and public transport felt like a death trap.

So far I haven’t got off scot free, but lighter than usual, but who’s to say for the rest of the winter. Fingers crossed. The only advice I can offer is obvious: where possible try to avoid infectious people and densely crowded places and be scrupulous about hygiene. Make sure friends and family know of your vulnerability to infection so they make sure not to come near when they have anything catching. Sleep separately from your partner when they have the ‘lurgy’. I have been using Cuticura Antibacterial Hand Hygiene Wipes to wipe anything and everything I suspect may be of potential danger including my hands, toilet seats, phones in the work place, hand rails in buses / trains (I have tried to be subtle so as not to offend others!), I have used anti-bac soaps and hand gels and also been giving Vicks ‘First Defence’ a go, in spite of my cynicism. So far, so good!

Apparently in Japan it is the norm to be highly conscientious about personal hygiene and you will often see people wearing face masks when they have a cold to prevent the spread of germs. Still, I can’t help but feel like I’m a bit of a prissy wimp. To get over this, perhaps we could try and start a fashion trend for the surgical mask like those worn in Hong Kong during the SARS epidemic as in the picture above ... mine’s the flowery one!

Easing an amber day

I am having an ‘amber’ day today.

You may be wondering what the hell it is I am talking about. Let me explain: it comes from the ‘code’ I use as a way of expressing quickly and simply to others (my friends and family mainly) ‘where I am at’ on that particular day, because as many ‘loopies’ know, how you feel can very hugely day-by-day. This means it is not possible to know how well I might be from one day to the next. (I admit that if it wasn’t something I had experienced, I would probably be very sceptical. I’d probably think it was an excuse for someone to be lazy or to avoid things when they fancied it – so I fully forgive any ‘doubting Thomas’s’ out there, but I assure you it’s true and it’s a real pain!)

A ‘green day’ is a good day where I have a fair level of oomph and feel well in myself. A ‘red day’ is when the lupus has flared and I am unwell with symptoms. An ‘amber day’, like today, is when I just feel inexplicably ‘low’. There may be some obvious symptoms, but really it’s just an incredible lack of energy, like the bones in my limbs are made of lead and any ‘get-up-and-go’ has been suctioned out of me.

It struck me today how much better I deal with ‘amber days’ these days. I used to ignore what my body was saying and used shear inner stubbornness to force myself through whatever it was I had planned for that day, however manic, stressful or energetic. I now refer to this as ‘overriding’. It is my will versus lupus. This was OK in the short term, but eventually it caught up with me and lupus won. All in all, I learnt the hard way - it’s a bad idea!

Today is a good example of the new ‘reformed’ me, which seems to mean I am able to live much better with lupus.

My ‘to do’ list for today was quite extensive, but when I found this morning I was on a lower ebb than I would have liked, I looked at the list and realised that there were only certain things that I had to do today (some work emails and go to the hospital for my blood tests), so I prioritised these. Everything else has been ‘bumped’ to tomorrow’s list (I’ll review it and potentially re-juggle again depending how I feel – work for next week and housework can wait a while).

Tonight’s dinner is going to be something simpler than I had planned – but still tasty and healthy. Tasty is important to keep the spirits up, but I also feel healthy and nutritious is important so I know I am giving my body the best chance to restore itself. For any ‘amber day’ I recommend this Nigella Lawson Recipe (that she aptly calls ‘Noodle Soup for Needy People’) for tastiness, nutrition and general ‘feel good’ factor – although if I don’t have the ingredients I just vary it a bit to fit whatever ingredients I have in my fridge:

http://www.bbc.co.uk/food/recipes/database/noodlesoupforneedype_87338.shtml

On an ‘amber day’ I now make a point of doing some ‘restorative’ yoga, which involves using yoga poses that have a particular ability to leave you feeling nourished and well rested. If you are sceptical about yoga (as many often are at first), you could think of it as ‘active relaxation’. It certainly uplifts me a bit – it helped a lot today. I will write more about the many ways in which I find yoga helps improve life, and how I find it is especially helpful for dealing with lupus, in the future but for a bit of general info now see:

http://www.wikihealth.com/Restorative_yoga_poses#Benefits_of_Restorative_Yoga

For me drinking Jasmine Green Tea and a telephone chat with a friend are also great ‘amber day’ props. I also find if I can, pottering about doing easy and gentle tasks helpful because it means I feel like the day has been constructive (today I re-potted a plant that had needed doing for ages which required minimal effort, but getting it done still gave me a sense of accomplishment and satisfaction). I’m just wondering if it would perhaps be worth ‘storing up’ these sort of easy, more ‘pleasurable’ tasks especially for ‘amber days’?

Today I also took a short walk (and coincidently bumped into a friend with her baby, which was a nice surprise) as I knew from past experience that cabin fever makes ‘amber days’ worse. One ‘loopy’ in our research gave an excellent tip: unless it really isn’t possible, always get showered and dressed at the beginning of the day, even if you are not going anywhere. It makes you feel far better than lolling in your PJ’s.

All in all, today hasn’t been so bad. In fact, I’d go as far as to say that going along with the whole ‘amber’ thing, rather than resisting it has turned a day that would have been a real struggle into a relatively good day.

And, I am hoping that on top of all this, an early night tonight will be enough to make tomorrow ‘green’.