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?

Yoga and Lupus: An introduction

Why 'loopies' should be prescribed yoga

Anyone reading this blog may well have picked up on my enthusiasm for yoga, so I thought it was about time I put something into words to explain why I ‘harp on’ about it so much in this blog.

My Mum practiced yoga when I was a little girl so I grew up with it, although in truth I didn’t start practicing regularly myself until my late 20’s, but my awareness and appreciation of it certainly far predates my knowledge and experience of lupus. As I’ve never been an especially sporty type what originally attracted me to yoga is that it is so inclusive: it’s is not the exclusive domain of the fit and gorgeous! What is wonderful is that it’s for anyone and everyone, and can be practiced anywhere and at anytime (or all the time when you really get the hang of it!). I’ve always liked the fact that it doesn’t matter how young or old you are, neither does it matter what your background or personal beliefs are; nor (as I was to discover to my relief) does it matter how ‘healthy’ or ‘unhealthy’ you are. Yoga recognises that everyone is unique and different and can be tailored to the individual whatever their situation. And thankfully, unlike many regular exercise classes, I’ve always appreciated that yoga doesn’t embrace a ‘no pain, no gain’ philosophy. In fact it’s quite the reverse: it is about listening to the body and working with it.

From the start the general health benefits of yoga were also attractive. On a physical level, amongst other things yoga has the ability to help create a more toned, flexible, and strong body, to improve respiration, energy, and vitality, to help maintain a balanced metabolism, promote cardio and circulatory health and relieve pain. And, with practice, yoga is proven to have a hugely positive effect on emotional and mental health. Regular yoga practice often helps the student start to find an improved ability to relax and handle stressful situations, to focus their energy and attention more effectively, to think more positively, as well as developing greater self awareness and of the world around them. Who could knock all that?

But when lupus made its unwelcome entry into my life, yoga took on a whole new meaning. I eventually learnt that practicing yoga was quite frankly invaluable to the point that now, if I had my way, I would insist that yoga was formally prescribed by doctors along with the necessary medicines to everyone with lupus. This is because in my view there are certain core issues to living with lupus that the fundamental practices and philosophies at the very heart of yoga address. For example:

Individuality: As we know lupus is a very individual disease which is partly what makes it so complex: although the root of the problem may be the same for everyone, the symptoms rarely are and even for the individual the symptoms change and vary greatly day-to-day and over time. This is where the flexibility of yoga comes into its own for us ‘loopies’. As I explained earlier, yoga is flexible so it can be adapted to meet the needs of anyone with lupus regardless of how it is affecting them (or not) at any given time, so they can continue to practice and address the issues affecting them as and when they occur. Throughout my problems with lupus including during some of my more poorly moments, I learnt I could use yoga in some form or another to my benefit.

Energy: Lack of energy is the blight of many a ‘loopy's’ life and is one of the more persistent problems. Working on creating, distributing and maintaining a healthy balance of energy and vitality (or ‘prana’ as it is known in yoga terms) is core to yoga practice and philosophy.

Flexibility and mobility: Arthritic aches and pains and flexibility are another more common lupus symptom. The gentle physical postures of yoga are proven to ease the aches and pains and improve flexibility. In spite of the impression you may have of yoga based on the misleading pictures of contortionist bodies twisted in fancy positions that are bandied around, yoga is not just for acrobats. I am certainly never going to be a bendy type of person, but thanks to yoga at least I have now restored a comfortable and respectable range of movement, my overall flexibility has certainly improved and the joint aches and pains are no longer a permanent feature of my life.

Relaxation: Stress is known to be one of the main triggers of lupus and stress and depression can also be consequences of the disease. Yoga helps us manage these things and when practiced often can help prevent them before they occur. Certainly for me I’ve discovered the equation is simple: less stress = less lupus. ‘Yoga nidra’, is a technique of yogic or 'psychic sleep' which induces deep relaxation and has the potential to help ‘loopies’ chill and manage stress. I recommend the following CD that you can try it at home as a good place to start:

http://www.yogamatters.com/product/659/cdpragynid1/deep-relaxation--yoga-nidra--vol-1.html

Pain management: Physical pain in various different shapes and forms is a common feature of having lupus and yoga teaches us techniques to manage it. A particular example in my own life that springs to mind is that I find that yoga breathing and relaxation techniques help me cope better with nasty procedures such as lumbar punctures and blood tests there are also a number of yoga postures I use to help relieve particular symptoms such as headaches.

Psychology: Much of Living Well with Lupus is about how we learn to adapt our minds to cope with the complexities of lupus. I, for one, was taken aback by the psychological impact the disease had on me when it got really out of control. Now, whilst yoga is often thought of as a mode of exercise popularised by particular celebrities, it is in fact far more. Yoga is a healing system of theory and practice: not just a set of exercises but an entire philosophy of being with the goal of achieving peace of mind and of body. I understand it as an approach to life that seeks to help the individual find a way to focus on being at one with themselves and the world around them; in lupus terms yoga can help provide a kind of constant impenetrable internal health that exists regardless of the unpredictable antics of the lupus.

Perhaps the best and most succinct explanation of how yoga can help us live a better life with lupus (or indeed without it) comes from B.K.S. Iyengar, one of the world's greatist living yoga masters explains:

“Yoga teaches us to cure what need not be endured and endure what cannot be cured”

So, I’d strongly advise anyone with lupus to give it a go. What have you got to lose? If you do decide to give it a go, it is worth noting that there are lots of different styles of yoga and classes vary greatly (I’ve been to some that are a bit too ‘out there’ for me to take seriously) but as with everything, tastes vary! So if you don’t like the first class you go to, it is definitely worth trying another. I’d personally recommend looking for either a ‘hatha’ or ‘Iyengar’ class although I reckon that ultimately a lot of it comes down to your opinion of the teacher.

NB The picture at top is me enjoying a spot of yoga practice at the top of a hill in the Peak District this summer!

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

Troubled Waters

Well it was bound to happen, it is sod’s law. After all this talk of keeping on top of things and having had a very good run, the lupus has paid another notable visit. Mouth ulcers, a rash on my hands and a patchy crimson upper-lip rash (ironically rather like the one I mentioned in my previous entry!), are all some of the visible manifestations of this flare, some of which can be seen in the accompanying picture.

But, like usual, it’s the things that can’t be seen that are really bothering me. Symptom-wise it’s the fuzzy head, aches and pains and the sense of being distant from the real world, and an insatiable fatigue that any amount of sleep or rest can’t touch.

But even worse than these are the emotions and worries that accompany this kind of flare, the kind that mainly gnaw away in the depths of the night: all the ‘what if’s’ and the ‘flashback’ memories of scary lupus scenes gone by, and the disturbing imagined forthcoming outcome scenarios and the feelings of ‘not again’ and ‘why now?’. And then there is the lupus loneliness; the loneliness of not wanting to bother or worry your loved ones again, and knowing that it is impossible for most of those around you to fully ‘get’ how it feels. There is also the feeling that without ever questioning the steadfastness and depth of his absolute love, my husband in spite of himself, likes me less when I’m in the depths of a flare and I don’t blame him, it’s no wonder, because I like me less. When I’m like this I am a nightmare to live with. I am low, snappy and sad and totally preoccupied with being ill – not exactly a bundle of laughs.

Don’t get me wrong. I have sufficiently good self esteem to recognise that all the inner negativity described above is just ‘flare talk’. A deeper and far wiser part of me knows that that this depressive (and probably not entirely accurate) outlook is a symptom of the illness. Moments of weakness and fear are what make us human. Nonetheless, I believe is important to acknowledge and accept such thoughts and feelings ... and then just let them go. This is core to yoga philosophy, something that studying has helped me enormously. Now morning has arrived, the darkness has passed, although the physical symptoms remain, my attitude has changed and inevitably a clearer, more realistic perspective has come. Phew!

So what can we learn from this? The key to being the master of lupus is to be the master of your mind.

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’.