Thursday, 26 November 2009

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’:

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!) :

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?


Gilly said...

Hi Daisy
It's been some time since I posted so first of all many congratulations to you and your husband.

I regularly read your pieces and find them really helpful. Some time ago you wrote about probs. with consultants and doctors - I could really relate to that and it helps tremendously to know others go through the same, often humiliating,

Your tips for 'Living Well...' hit the spot too, especially the Trevor Sorbie web site - thanks. I'm just about to embark on the adventure of my first wig and I need all the help and encouragement I can get. It took me some years getting used to being bald and my scalp was too sore and scarred to be able to wear a wig, but now, I'm told the problem is in remission and a wig is possible. However, seeing myself with hair and facing my family and friends is a bit daunting. If nothing else I've developed a good sense of humour.

Thanks again, keep writing and keep well.

Daisy Seale-Barnes said...

Hi Gilly

I am so pleased to hear from you again and glad that you are still reading. Thanks so much. It's sometimes hard to know if what I'm rabbiting on about is of any relavance to others, so I'm truly grateful for the reassurance!

I am delighted to hear that your scalp is finally recovering and best of luck with the wig adventure! Although terribly nerve-wracking, I reckon if you use all your courage and hang onto your good sense of humour (a critical tool to keeping on top of lupus, I belive!)I think it could be a lot of fun. Another website that I read about, and liked because of its positive approach, that might be worth checking out whilst embarking upon your 'new hair' quest is:

Keep in touch and let me know how you get on.

Daisy x

Leslie said...

I love this post, Daisy! I have been reading and reading all I can about Lupus and autoimmune deficiencies, but this is some good practical LIFE suggestions. I esp. like the hair dresser tip because I drove two hours to see the lady who did my hair in college once my hair started thinning really bad! #3 was good too... just out of curiosity (coming from a "newbie"), on average, how much medication are you on? I know that you are pregnant, do you have to take more than the normal pre-natal vitamins and such because of the lupus?

Thanks again for your postings! Hope all is well with you and your bun in the oven!

Poodle Soup said...

Hi Daisy,
Just popping in to wish you and your family a very Merry Christmas.
Thank you for your always insightful and inspiring posts. I wish you a wonderful 2010!!
Big hugs

Anonymous said...


Daisy Seale-Barnes said...

Hi Leslie

Happy new year. Sorry it's taken me so long to respond (not even sure if you'll see this it's so long coming!) but I've not been able to get online much of late.

In answer to your question, I am still on various meds including steroids, immuno suppressants and Plaquenil but accoding to my doctors they are all considered generally ok for pregnancy at the level I am taking them. As I understand it, it is fine to be a pregnant 'loopy' so long as your lupus isn't active and (most importantly) you talk to your docs beforehand so they can give you advice and adjust your meds to suit you and your situation.

Hope you are doing well and keep in touch.

Daisy x

Daisy Seale-Barnes said...

Hi V

Thanks for the Christmas message and happy new year to you too. The whole festive season seems so long ago now doesn't it?! Apologise again for taking so long to get back to you. Lupus-wise I hope you this year is better for you. Hopefully now you know a bit more about what is going on it should be easier to manage.

Hope to hear from you soon.

Daisy x

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Jeri Burtchell (TickledPink) said...

Hi Daisy! I came across this post while searching for patient perspectives on managing stress with a chronic condition. I am the Director of Patient Initiatives at HealthiVibe, LLC and part of my job is to find people to guest blog for us. I think your post is full of great information about how to deal with stress and this would be helpful for anyone living with a chronic condition. I was hoping you'd let us repost this blog post with links back to your blog or other social media. You can find our blog at www (dot) healthivibe (dot) com/blog. I look forward to hearing from you.

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