Lupus Awareness Month: Days 22, 23 & 24

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 T, U & V

TOP TIPS to USE that I find VERY helpful!

(You might too)


If you have your meds sorted out and your bloods are stable you think you should be feeling okay but you are NOT! That’s lupus for you. So this is where the self help has to kick in- ‘coping strategies’ is another way of looking at it. For me I meet lupus head on and this post is very much about what I do to help myself.

The picture shows some of what I am talking about. When I go out I have to have a little ‘kit’ with me to cover all eventualities.

Moisturiser with SPF- this is part of my daily routine. Getting up and getting ready for the day involves applying a good moisturiser with built in Sun protection. Here in the UK I have found two. The first is by Neutogena with SPF 25 for UVA & UVB. Fragrance free and very light to wear. But becoming increasingly difficult to source other than online. I have recently discovered a replacement product by Simple which is SPF 30, also UVA & UVB and fragrance free Just as lovely to wear and a new product (I  understand) so when I found it on opening offer at 2 for 1 I stocked up!

Sun Cream- At least SPF 50 to be carried at all times regardless of the season. Sun sensitivity is not confined to the summer months or indeed to natural sunlight. Many Lupies have a problem with the light from computer screens and certain types of light bulb. We are able to get suncream on prescription but I have not made use of this as yet as I have preference for certain products! Call me fussy. I talked about the problem with light sensitivity in a previous post with links to a UK site that tells you all you might need to know-

Sunglasses and sun hat- for the same reasons as above. Also I often carry a scarf of an appropriate weight for the season since a particularly sensitive area is above the breast bone and can easily blister in the wink of an eye.

Sterilising hand gel- not because I am OCD but due to the fact that immuno supressant drugs make one more susceptible to pick up germs. The gel is a small step to take to guard against this.

Remedies- I carry paracetamol as a general additional pain killer. Tiger balm for headaches, ranitidine to settle the stomach (all those drugs play havoc with the digestion- as well as as the lupus- another catch 22) and my favourite Bach’s Rescue Remedy- some people are sceptical about such things but I find it reassuring in times of stress and anxiety .

 Steroid Treatment Card-  Here in the UK one is required to carry the blue card when on steroid treatment (hurrah for me I am NOT currently for the 1st time in three years) which states dose. This is extremely important since steroids must be reduced very very gradually.

The following taken from-

Why is it necessary to reduce the dose gradually before stopping oral steroids?

Your body normally makes steroid chemicals by itself which are necessary to be healthy. When you take oral steroids for a few weeks or more, your body may reduce or stop making its own steroid chemicals. If you then stop taking oral steroids suddenly, your body does not have any steroids. This can cause various withdrawal symptoms until your body resumes making natural steroids over a few weeks. The withdrawal symptoms can be serious, even life-threatening and include: weakness, tiredness, feeling sick, vomiting, diarrhoea, abdominal pain, low blood sugar, and low blood pressure which can cause dizziness, fainting or collapse.

If the dose is reduced gradually, the body gradually resumes its natural production of steroids and the withdrawal symptoms do not occur.


This explains it in medical terms-

Prednisone is used to treat certain rheumatic diseases and several other serious health conditions. It is a synthetic (artificial) version ofcortisol, a steroid hormone naturally present in the body. Cortisol is an essential hormone that plays a number of vital roles. It helps maintain blood pressure and regulate the metabolism. It helps the body adapt to stress. And it helps moderate the inflammatory response the immune system uses to fight infection and injury when that response is no longer needed. Cortisol is produced by the adrenal glands in tightly controlled amounts. Another gland, the hypothalamus, senses the level of cortisol in the blood and, depending on the level, signals the adrenal glands to increase or decrease cortisol production.

Therefore the body needs to gradually take back over from the artificial steroid. Click on the text to take you to the source of the information.


Exercise- my favourites are swimming, cycling, pilates and my rowing machine. The trick is doing it when you can but NOT going all out just because you are having a good day. MODERATION is the key.

Relaxation-  do what makes you feel good! Apart from specific techniques such as guided meditation-

I talked about ‘mindfulness’ and the lovely ‘Honest Guys’ you tube channel that I personally find very effective.

If I can’t get to sleep or am wakeful then relaxing music on headphones in bed is better than lying there fretting. And my final bit of advice is to find something that occupies your mind away from the lupus- for me my crafts have been super brilliant for this and undoubtably my best THERAPY.



If I continue to do ‘3 in 1’ posts for the rest of LUPUS AWARENESS MONTH there are only two posts left…



Author: onoodlesstitchcraft

An erstwhile teacher who has taken a new path due to illness and returned to an earlier existence exploring her artistic and creative skills of stitchcraft. My oldest son laughs and says I am as mad as a spoon, qualifying the comment that I am not like other middle aged mothers... well hurrah for that! So what do I do? I love to cook, I am never without a craft project or a few on the go, I love my garden, walking, nature and the environment. I am a magpie for vintage patterns and love colour. I get pleasure from creating and giving to friends. I have a rabbit! I ride a bike and recycle... Drink too much tea and like nothing better than to lunch with friends. Snuggling up on cold winter nights is essential. I like the theatre; musicals and dance in particular. Amongst my favourite films are Seven Brides for Seven Brothers, Singing in the Rain and Fried Green Tomatoes. I love to read anything from Crime thrillers to classics (love Wuthering Heights) or biographies about inspirational people. I hate sexism or racism and disingenuous people. I value friendship and above all else my family.

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