Friday, 23 October 2009

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:

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

Hand hygiene
bviously – 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:

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:,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.

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!

Tuesday, 20 October 2009

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!

Friday, 16 October 2009

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’sCedrus Temple Soother’ and ‘Cedrus Room Aroma Rocks’ both part of their new ‘Sleep Body Therapies’ range which I have found good:, 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”: 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

Monday, 5 October 2009

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.