Lupus - how can I help myself?

[KTC67]

Hello I’m new to this and am only just accepting my lupus after 2 years diagnosis! Can anyone recommend any great self help guides/books please. My lupus is awful atm and I need to try anything? Thank you

[WinterSwimmer]

Sorry you are feeling rough. Can you contact your rheumatologist?

There are books in the Lupus UK shop that will help you find out more about how to manage lupus, though I must say, if you are getting to acceptance after only two years you're doing OK. It took me 5 and kidney failure to believe in it - even though I felt pretty ill a lot of the time. It's just so hard to accept the idea that you have an incurable illness.

[KTC67 in reply to WinterSwimmer]

Thank you for your reply

[svfarmer]

Hi and welcome 🙏 to the group - it’s good that you’ve got to the stage of accepting your lupus, it took me quite a while too, I was a very fit and active person before I had lupus and it comes as a great shock that you have to slow down and rest - that’s the advice I can give to you - at first I didn’t give in to my fatigue and would not slow down but I had to accept it in the end as I become very ill with lupus so what I’m trying to say is if your tired you must rest - best wishes x

[KTC67 in reply to svfarmer]

Yes I too am very fit and so lots of exercise. I ran the London marathon ten years ago and have always exercised so it’s come as a huge shock. Thank you for your message as it really struck a cord with me. I think it will still take me some time as I’m a busy bee at heart! I need to learn how to slow down. Do you take any extra vitamins? Vit D?

[svfarmer in reply to KTC67]

Yes I take vitamin D and I have bone broth too which has helped me - it’s good for gut health x

[KTC67 in reply to svfarmer]

Oh thank you so much I will look into that. any other self help tips?

[KTC67 in reply to svfarmer]

Do you make it yourself or take it in tablet or powdered form please?

[svfarmer in reply to KTC67]

The bone broth you can buy on Amazon or eBay - it comes in a really thick paste in a container that you keep in the fridge - I have a teaspoon mixed with hot water and I also put quarter of cube of bovril so it tastes really nice - you can make it yourself by boiling up organic bones but for convenience I find the already made stuff better - the one I get is called best of the bone broth xx

[KTC67 in reply to svfarmer]

Thank you so much this is such excellent advice I’m going to order today. Anything we can do to help ourselves is so important. Stay safe Katie

[svfarmer in reply to KTC67]

Your very welcome- have a good day xx

[BeeManShrop]

Hi KTC I found the best book on the lupus shop was The Lupus Encyclopaedia -it is very comprehensive and written in language for the layperson, but it is American but the logic is fine for the UK. There is another book Lupus Diagnosis and Treatment which does hold some good info but it is written by medics for medics -- I needed a dictionary close at hand.If you have fatigue then the best advice I had when I was having chemo some years ago was when it happens or sweeps over you, then do not resist it and do not try to sit it out in a chair, you must accept it and go straight to bed and lye down properly. My wife who now has Lupus is following that advice, (after firstly trying the settee option) and she now would recommend it too.

Hope this helps.

[KTC67 in reply to BeeManShrop]

Hello BeeMan thank you so much for your reply and advice. I will certainly keep this in mind thank you

[Krazykat26]

Hi KT 🤗I would recommend How To Stay Sane In Pain by Karen Drennan-McKewan.⭐

Its written by a lady with lupus herself n it's my go to handbook!! Lots of information n advice written in plain understandable way!!

I've read that you're a complimentary therapist too n Karen has lots of tips with regard alternative therapies.

Welcome to the group 🤗🌈😽😽xx

[KTC67 in reply to Krazykat26]

Thank you so much I will certainly have a look xx