Butterfly Walk

The 10th May is World Lupus Day when organisations from across the world unite to try and increase public awareness.

The truth is, if other people - from employers and politicians to friends, colleagues, and acquaintances, people on the bus, doctors and nurses and let's not forget 'Bob your Uncle' and 'Fanny your Aunt' - had even just a tiny bit more of a clue what lupus is and how it can affect people, things would be so much easier for 'loopies' far and wide. It may also be diagnosed more effectively. So all in all, it is my belief that promoting awareness can only be a great thing.

Sadly, World Lupus Day is not top of every one's priorities, and unfortunately this it year coincides with an important date on my Yoga Foundation Course, so I am unable to attend.

So, this is a little plea calling on anyone reading this to help the St Thomas' Lupus Trust by joining them for the 5k walk (or run if you are so inclined). For details:

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

The best bit is that you get to dress as a butterfly! This would be the highlight for me because I reckon the 'butterfly look' has a LOT of potential ... the picture at the top illustrates the sassy butterfly look I would most definitely be sporting if I were there ... who could argue with those metallic leggings!?

Thanks to anyone who does this.

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!

What's Your Weather Vane?

Why it could be worthwhile identifying your 'weather vane' symptoms

It has occurred to me that one of the key ways I have started to manage life with lupus far better than I did in the past is because I am far more conscious of it than I used to be and therefore tend to ‘nip’ any nasty lupus action ‘in the bud’ before it gets too hardcore.

The key is spotting the signs and dealing with it before things spiral out of control.

Take this week for example. My husband has had a nasty on-going cold which I had miraculously seemed to avoid (see previous post!) but last week the inevitable happened and I got a mild version too. This weekend the roof of my mouth turned into one giant ulcer and each side of my mouth ulcerated too.

Now, this is something I have become quite used to, as in recent years it has been a clear indicator that the lupus has been ‘sparked’. In the past I might have tried dealing with it by ignoring it and hoping it’d just go away or if it got unbearable by putting something on it that I bought from the chemist: after all, why make a fuss over something so minor? So things were left to take their own course. Unfortunately it was more often a case of ‘one thing leading to another’.

These days I am more aware. I now recognise that obviously having a cold has ‘pissed off’ the lupus. I now recognise that although admittedly painful, for me mouth ulcers are no bad thing. This is because they act as a kind of ‘weather vane’ to tell me which way the ‘wind is blowing’ with my lupus and so, in consultation with my doctor, the situation has been address and my meds altered accordingly and hopefully and major flare has been averted. Fingers crossed anyway!

Over the years the symptoms that act as my ‘weather vanes’ have changed but I reckon if you are aware of yourself, you soon get to learn what to look for as your ‘tell tale’ signs at that time. I find if you make sure you look after yourself and get help at the point your ‘weather vane’ changes, the situation often stays more manageable.

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’.

Happy New Year

This is just a quick note to apologise for not having posted anything for so long after having got off to such a flurrying start. First I caught a sickness bug that I picked up in the hospital when I went for my weekly blood tests which put me out for a while. This had a knock-on effect on other things: I had to catch up with work and Christmas preparation – (you know how busy it gets!?), and then came the holiday season. Anyway, enough excuses! I just wanted to say ‘happy new year’ to anyone reading this and thank you so much for taking the time to do so.

Be assured I am now on the case of writing some more bits and pieces that will follow over the next few weeks, and I hope they will be of some interest to you. My aim is to share, discuss and get advice from other ‘loopies’ about getting the most out of life despite lupus. Ideas for themes that might be relevant and useful come from our research as well as my own experience (hence the next feature being about trying to avoid infection – or not, as the case may be!) and I will also share my story so you know why and how this whole Living Well with Lupus business came about. Other issues I am considering discussing this year are relationships, mouth ulcers, Reynauld's, hair loss and yoga.

Aside from wanting better emotional and practical support for people with lupus, my other major preoccupation is raising general public awareness and understanding of the condition. For a disease that affects so many people, lupus has a low profile, especially here in the UK. The good news is that I had an idea when I was in the shower this morning that may help with this (don't worry, I am not planning a 'Fathers for Justice' type stunt or anything like that!) but before I get too excited I need to find out if it could be a goer and if it is, you'll be the first to know.

All in all, I hope you'll find it is worth watching this space in 2009 and keep in touch ...