Wednesday, 25 March 2009

The four 'P' approach

I have been having a bit of an 'amber' time recently and am trying to work my way through some more health difficulties and medical conundrums associated with the old lupus. This is not helped by the fact things are busy right now, not least because we are planning a surprise party for my Granny's 90th birthday which is great fun, but involves a fair bit of work.

I was therefore really pleased to hit upon a very insightful tip when I was resting yesterday, given in Lupus Now by another 'loopie' in America, called Ann Utterback. It struck me as a very succinct way of expressing the key to Living Well with Lupus. It gave me the focus I needed to get back on track mentally during a moment when I was feeling rather despondent so here it is in case it is also of help to anyone reading this:

Practice the four P's:

1. Plan

2. Prioritise

3. Pace yourself

4. have Patience

I think this is excellent advice because it is simple and clear yet it captures everything that is key to working around the lupus.

Incidentally, I recommend Lupus Now in general. It is the magazine produced for loopies and their families by the Lupus Foundation of America. It was recommended to me by one of the loopies that took part in our research (thanks Dierdre!) and I now subscribe, although you can now access it online too: I find the articles are relevant and offer lots of useful information and advice.

Anyway, I am off now to dot a few 'Four P' post-it notes around the house to remind me to plan, prioritise, pace myself and be patient, so I won't go wrong.

Sunday, 22 March 2009

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:
  • 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.

Friday, 20 March 2009

Prednisolone the friend and foe

Many a ‘loopie’ has to take Prednisolone at least at some point and often long-term, to control their symptoms - me included. If you don't take it now there is a strong likelihood it may be necessary at some point.

But Prenisolone introduces yet another lupus paradox: the very drug that saves your life (and let’s face it, regardless of what you feel about it, it does seem to help keep things in check) simultaneously messes you up in one way or another. The only way to describe my own feeling towards it is most definitely as a ‘love / hate relationship’ and I have found this is true for others too.

The alarming potential long term side-effects such as osteoporosis, diabetes or stomach ulcers are one thing, but the future is unknown and we can but hope for the best. Nonetheless, we are still able to take the best measures we can to help avoid such outcomes, such as taking calcium supplements, eating a healthy diet and taking medication to protect the stomach lining.

But it seems the more immediate and pesky symptoms that plague us in our daily lives are the ones that really bother us and give us a sense of righteous indignation. I’m talking insomnia, acne and weight gain for example, not to mention other common nasties like depression and / or ‘mania’. I can’t help but feel any of these is like adding insult to injury!

Still like it and/or loath it, until our dream ‘wonder cure’ is invented (and I am optimistic that one day it will) many of us have not much choice but to live with our ‘friend and foe’ Prednisolone if we want to keep the lupus symptoms under control. All we can do is approach it in a pragmatic way.

I suppose it goes without saying, first and foremost any side-effects should be discussed with your doctor, then take on board their advice. Beyond this, in order to reap the benefits of prednisolone, you have to seek out ways to cope with the side-effects and manage them as best as possible. My success in achieving this has varied depending on the particular side-effect in question. For example, each time I think I’ve cracked insomnia (the kind where after going into a deep sleep you wake up at an unearthly hour say 4.00am, as if you have an inner alarm clock programmed, only to finally drop off again 5 minutes before the real alarm goes off) for it to come back and start plaguing me all over again, so I am still working on that one. With others I’ve had more success. So it is my intention to do a post looking at each side-effect individually and considering how best to tackle it. I am going to kick-off with avoiding weight gain as this is the one that seems to affect most people to some extent and certainly gives rise to the greatest upset. Watch this space.

Monday, 2 March 2009

Stop to Go

I need to get this down in black and white (or more accurately green and white in this instance), so it’s ‘out there’ for everyone to see and to ignore it would be entirely hypocritical on my part. To 'practice what you preach' is after all, only right.

The funny thing is that in my heart of hearts I know that this lesson, if learnt properly, is one of the most fundamental ways to ensure you can optimise life and get on in spite of lupus. I’ve been told it by others: doctors and loopies alike, and even learnt it the seriously hard way for myself and I think I may have already written abou it on this blog before, but I just seem to lose sight of it every so often and bugger it up (last Friday for instance). I wonder, does anyone else have this problem?

Anyway, I include it now as a permanent ongoing reminder to myself. As with so many things appertaining to lupus, there is a definite element of paradox at its heart but remember this, and you will thrive much better:

When lupus hints that it is about to put in an appearance, the best thing to do is nothing. In other words the best action is non-action. That is stop and rest; physically, mentally and emotionally. Cancel what you had planned. You’ll be surprised (as I invariably am) that in spite of what you might believe, in reality there is actually very little that really just cannot wait. If on the other hand, you choose to ignore it, it will just get worse and suddenly everything has to wait, like it or not. This can be much more long term. Listen to your body and never try to push on regardless. Ironically, the less you do now, the more you will be doing in due course.

Some highly important little sub-points to be remembered:

  • Although it might not be planned or especially convenient, relaxation is always a wonderful thing so be flexible, and remind yourself to just enjoy it and then you are still living well
  • Good old Richard Carson reminds us we should “let go of the idea that gentle, relaxed people can’t be super achievers” - oh yes we can!
  • Gently does it. Once the rest has done the trick and you have restored some of your ‘va-va-voom’, resist the temptation to go crazy otherwise you’ll find yourself trapped in a vicious circle

What wise words. Now all I have to do is just make sure I take heed ...