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?

No more tears

Don’t you find that it’s often the little things in life that make the biggest difference? A couple of weeks ago I visited the optician for my routine eye appointment only to discover that the lupus (or rather the ‘Sjögren's syndrome’: the condition that often accompanies lupus, that attacks the glands that lubricate the eyes) has recently been affecting me to the point that he felt it may be too damaging for my eyes to continue wearing my contact lenses any longer. Now although this may seem like a very small sacrifice compared to some of the others that us loopies have to make to manage the lupus, I was especially downhearted by this one. I felt like ‘crying my last tears’ – literally!

I don’t wear my contacts everyday but like to have them for certain physical activities such as yoga classes and walking where glasses steam up and get in the way: but who am I kidding? In honesty I most appreciate them for purposes of vanity. Whilst I have a reasonably nice pair of specs which I am perfectly happy to sport during general day-to-day life, when I am getting dressed up to go on a date, meet up with friends or to go somewhere special, I can’t help but feel my glasses put a dampener on things. I find that occasionally feeling you can look your best, if only once in a while, helps lift the spirits no end.

So it was with great relief that on my return appointment this week after giving the contact lenses a rest for a of couple weeks and regular use of artificial tears prescribed by my GP (Carbomer Gel 0.2%), the optician has given me the go-ahead to wear my lenses, so long as it’s restricted to ‘high days and holidays’. I am happy with that.

And for those times in between, I intend to get straight onto the new ‘geek chic’ trend that’s going on right now, for which a pair of nerdy glasses are a definite must!

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)

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.

Lupus Through the Looking Glass

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

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

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

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

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

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

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

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

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

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

So what to do about all this?

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

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

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

1. Discuss whatever it is it with an appropriate professional (albeit a hairdresser, beautician, dietician) to find out what advice they  have and what can reasonably and safely be done – don’t forget to ask your doctor too
   
   
   
2. For disfiguring skin blemishes Red Cross do regular camouflage clinics – I attended one at The Louise Coote Lupus Unit and the lady was very understanding, kind and helpful and prescribed concealer and powder as well as showing me how best to apply it
   
   
   
   http://www.redcross.org.uk/standard.asp?id=49354
   
   
3. Treat yourself to nice products and pamper yourself to make you feel good about yourself and make the best of your physical assets, to help draw attention away from less satisfactory things. I was bought some gorgeous bath and shower oil called ‘Relax’ by Aromatherapy Associates that never fails to make me feel at least a little better
   
   
   
   www.aromatheropyassociates.com
   
   
   
4. Smell good. Oddly, a little splash of my favourite perfume always makes me feel I somehow look better!
   
   
   
5. Wherever possible, smile. It works inside and out.