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!

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!

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.

Is it lupus who is the master of disguise, or is it me?

On recent occasions I have met up with friends I haven’t seen in a while and certain questions and remarks they made showed that they clearly don’t have a clue about how much lupus plays a part in our lives these days and the impact it has had on us. For example, it was flippantly implied that my having largely given up most my paid work for the time being was some kind of indulgence (something I’d like to go into in more detail in a later post). Although I was momentarily irritated as they’d hit a very raw nerve, I quickly realized that any insensitivity was entirely unintentional and most importantly, that I was at least in part to blame for their misunderstanding.

When I thought about it I realised that although friends and family have been told of bouts of illness, periods of hospitalization and we’ve been open and honest about the complications all this has brought to our lives, it really just amounts to ‘hearsay’ as only very few have witnessed evidence of it for themselves. In fact on the whole most of them have only seen me looking and acting well. When I meet face-to-face with others I find myself always doing my best to present myself as positively as possible both in temperament and appearance. Even when the lupus is trying to deny me and energy is running low I often find I just ‘dig deep’ and carry on regardless. So it’s really no wonder people have the wrong impression.

This led me to question whether it is just a façade and to ask, am I somehow being dishonest and just putting on a show for the outside world? Could it be that I have been using a ‘disguise’ of wellness and positivity to fool others and hide from the reality, in a similar way to which the lupus itself disguises itself as other illnesses to conceal its’ real identity?

After much thought I am glad to say I don’t think this is the case. I realised that it’s not that I’m being false or deceitful, quite the reverse: it is just part of me to be sociable and friendly. As those the closest to me would vouch, by nature I am generally a relatively cheery person who, within the boundaries of realism and honesty adopts a positive outlook. It is the way I find my way through life. Tony my husband is very much the same. So during times that I am ‘out and about’ talking to others and being part of the world what they see is not the lupus but just me being me and being so is interpreted as ‘healthy’ by others. Equally, perfectly healthy people who are negative and unengaged can seem unhealthy. So I suppose it is unsurprising that others can easily fail to appreciate some of the ongoing challenges and wretchedness that the lupus bring to life when it so chooses (and on a more frequent basis than many imagine) as these things are not visible.

As being the way I am requires a good level of energy, I have often surprised myself how I have managed to carry on ‘being me’ without it being obvious to others. Even when I am in hospital I manage to chat and befriend the nurses and cleaners I meet and I am sure they wonder what on earth I am doing there. I have even driven myself through high profile presentations for work which I’ve done successfully without anyone suspecting anything untoward only to find myself shortly after.

It is only in the very worst times that this ability to ‘shine on’ regardless has been affected. For me those rare occasions where I felt lupus had robed me of my personality were the most desperate and frightening. Only my very nearest and dearest have witnessed this as I retreat from the world.

So on reflection in some ways I am glad that others don’t get it. I want to be me and I am glad that I still can, even with the omnipresence of the lupus and all its many faces.

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.

What's been going on?!!

After a long, unexplained absence I am back. Let me explain the reasons for my online disappearance...

Firstly, the mundane and practical reason I have not been able to visit my blog is that I have been without a computer for six weeks. A long story I won't bore you, which involved the breakdown of our laptop and investigations that revealed that it would be more expensive to repair than to replace blah, blah, blah. The long-and-the-short of it is that we finally have a new laptop up and running, although none of the data from our old one (we are working on this). It has been a nightmare as I've only been able to pick up emails sporadically and not able to visit livingwellwithlupus.org at all. Strangely, it felt like I'd lost one of my senses. Now I've finally had the chance to get back online, I have discovered a number of new messages and introductions from some fellow loopies out there who have stumbled across the site. Thank you so much. I often feel I am writing into the abyss so it is really motivating to have your support and to find that what I am writing means something to someone; to be reminded that I am not the only one trying to navigate the unpredictable minefield that is lupus. Now I am happily installed back in my little office which has stood empty for so long, I will be responding to each and every message so I hope you haven't given up and will be back to see.

Meanwhile life during this period has been far from uneventful. I discovered, mainly unexpectedly that I am pregnant - now 16 weeks (I told you the holiday in Italy was good) !!!!!!??????????!!!!!!!

Tony and I had planned to start a family after we got married in 2006, but thanks to lupus it was not to be. My doctors knew this was our wish, but until recently the medications controlling my symptoms meant that it was out of the question. Over the last six months they helped me juggle my medicines to find a way to make the prospect feasible (mainly by switching from MMF to Azathioprine and getting the steroids down as low as possible) which wasn't without its problems, but eventually worked. We'd all but convinced ourselves that after everything we'd been through over the last four years in particular, conception probably wasn't going to be straight forward but nature took its course far quicker and more easily than we'd expected, so we both went into shocked disbelief when the pregnancy test indicated positive. After four tests and confirmation from the GP we started to believe it may be true, but were scared of running away with the sheer wonderfulness of the possibility, because we knew matters relating to my health are rarely straight-forward. Sure enough week six into pregnancy the lupus decided to flare. Apparently this happens to approximately 30% of SLE patients, although I understand for many pregnancy also temporarily ‘cures’ symptoms. Things have been controlled and settled to some extent by an increase in steroids and generally I have been doing well. Fortunately, I do not suffer with certain key things that are known to complicate lupus pregnancies, such as sticky blood and so far I’ve been fortunate enough not to have had any kidney involvement. Anyway, regardless of how I am when we got to see the baby at the 12 week scan it certainly looked full of beans!

Managing pregnancy let alone new born babies when you have lupus is a whole new territory for me and is not something that our research explored (let’s be honest the fact that no respondents who were pregnant or with young babies volunteered to take part probably speaks volumes in itself!) so I guess learnings on this topic will be working progress. I have now stopped working entirely for the time being so have more time to dedicate to livingwellwithlups.org and plan more regular postings. So for now it’s a case of ‘so far, so good’, and we are touching an awful lot of wood and keeping fingers and toes crossed at all times.