Planning to stay in control

As Benjamin Franklin once said, there are only 2 certainties in life; death, and the taxman, (!) and you don’t need to have a life-limiting condition to make plans about what you want to happen in various circumstances that could, possibly, end life. But how many of us have?

At the MS Therapy Centre in Bedford, we sadly lost a member recently;  who’d been getting along, managing with lots of disability, but had a very mellow outlook, a sunny smile, and life was still sweet. However, a sudden infection in this sort of case, can prove fatal, and this time, sadly did. Losing her company  coincided with me visiting Leeds for an excellent study day run by the MS Trust, about end of life issues.

MS end of life study day Mirandasmsblog.com

Hello Leeds! & Thankyou, MS Trust

Well, I can tell you that  as a nurse, I’m perhaps more aware of the ‘circle of life’, and my husband is under strict instruction that should anything ever happen to me, he must ensure that my legs are shaved and my makeup is on at all times – and apart from that, I’m not bothered!

dear hubby, - don't let this happen!

dear hubby, – don’t let this happen!

lipstick

But what other options are there, and how can you ensure that what you want to happen, will happen?

What I learned yesterday, is that although there are various forms you can fill out, it is just as valid to put your wishes in a letter, to be shared with  the GP and close family/friends, kept with your notes with any health or care providers, and on the fridge at home if you have been going in and out of hospital recently.

Planning for future care doesn’t mean that you can’t change your mind later, and restate your intentions, but sometimes, if you do become very unwell or disabled, it can be hard to make your wishes clearly known. Putting your wishes down on paper can give you more control, and give yourself and family members of carers peace of mind, that in the heat of the moment, what happens is what you want to happen.

In law, we don’t have the right to demand certain medical treatments, and the default position of our health service is to always treat what can be treated. We do have the right to refuse various types of treatment however. So  things to think about are:

  • If you were taken ill with an infection, would you want to be taken to hospital, or treated at home?
  •  If you weren’t able to take antibiotics as tablets, would you want them intravenously? This can also be organised at home in most areas.
  • If you were extremely poorly, would you want to be put on a ventilator?
  • If your heart stopped, would you want to be resuscitated?
  • If the answers to these questions depend on different circumstances, what would those circumstances be?
  • In the event of becoming very ill or unable to communicate, what is important to you?

See me to discuss these issues further, or help to draft up a letter.

On a lighter note (SUUUUUUCH a bad pun!) Last year, one of our members emailed me to let me know how much better he was feeling after just a short time using a lightbox. Here’s what he said then:

Hello Miranda,
Further to our chat in the car park at the MS Therapy Centre on Thursday, here is the link to the light box I was talking about:
http://www.amazon.co.uk/SAD-Light-Box-Medically-Certified/dp/B00A6SHSHY

I found it on Amazon for £44, plus about £5 p+p, which gives a total cost of about £50.
There are others which cost in excess of £100 but, having read the reviews and specifications, they all seem to do the same job.

In my totally unscientific testing, I’ve found that I feel better and have fewer symptoms if I have the light on when daylight levels are low.
So I use it when it is raining, fully cloudy, or just more cloud than sunshine and mainly first thing in the morning and towards the evening.
I have it sitting about 3 to 4 feet away, at head height and just over my right shoulder when I’m working at my desk on my computer.
I wouldn’t recommend having it pointing at one’s face as it is very bright and would likely lead to eye strain.

I have only had it about a month, but have noticed a difference on days with heavy clouds when I haven’t used and when I have.
I’m looking forward to seeing what difference it will make this coming winter.
If you’re interested, I’ll let you know in the Spring whether it worked or not.’

Well, in the interests of science, journalism and health, I thought I’d follow that up after 1 year, in these gloomy days of February! And the answer is, Yes! He still finds this very helpful, reporting that the warmth and brightness give a definite sense of wellbeing, it appears that urinary urgency is reduced, and he has a marked decrease in fatigue/improvement in energy levels, and is able to work until about 5.30, instead of about 3.30pm each day. Very Interesting. Thankyou, mystery tester.

lightboxRemember that lightboxes don’t get you  making vitamin D, which is important especially at this time of year; a sunbed will, as long as it includes UVB rays. As long as you’re responsible about your skin ( not using sunbeds to get a tan, but a quick dose to just before you start to change colour) there’s no harm in using both… but roll on summer!

 

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