Hello my fellow Lupies, I hope this finds you well, though the weather is a bit dreary!
I for one have had enough of this silly Lupus thing! I have made a decision that I will no longer let it rule my life. The pain, the headaches, the swelling of joints, the sleepless nights, I know it is terrible to live with but you know what I have realised, your environment can make things worse.
STRESS. You have to eliviate the stress from your life, stay calm and positive as much as you can. I find just sitting alone for 15 minutes, close my eyes and breathe deeply I feel calm and the pain eases.
DIET I have found controlling what I eat has helped my mood greatly too.
EXERCISE I exercise every day, when the pain is too bad I will try light exercise, trust me it lifts the mood and combats the horrid feeling of the weight gain that is caused by the steroids.
If there is a problem in your life sort it, if something is upsetting you change it, we have to look after ourselves and through that we will be able to live a more normal life with our loved ones.
Be strong in mind and the rest will follow. I have suffered and still am like the rest of you but I have had enough of LUPUS controlling me. We have to fight it and this site also helps me, whatever is on your mind unburden yourself, we all understand here and we are in the same boat.
If there is anything that you can suggest that may help others please do. Lets not suffer alone, we don't have to!
Stay strong, big hugs
Pammy xx
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Pammy76
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i also believe positive thinking helps us such alot too!!I think trying the best we can to include some of your tips her into our daily routines really does help.
If we can feel better in mind with Lupus the body will do it's best to follow !
I eat more fish now than before, Cod, tuna, salmon, mackeral, I eat more whole wheat products instead of white, bread, pasta, even flour for chapattis is brown, eat morw greens, spinach etc, I drink milk every day, semi skimmed, I cut down on fatty foods, eat a handful of nuts a day, mainly almonds. Just trying to eat healthy and most important drinking more water! I feel better and have lost weight in conjunction with regular exercise.
The steroids made me gain over a stone in weight and I had to act fast so I did. I hope this helps.
Great post, thank you. As a registered nutritionist (with a MSc in Nutritional Medicine) I really believe that diet/nutrition can impact lupus and have put information on my website here: nurturewithlove.com/lupus/
For me being positive and keeping a daily gratitude list really helps. I want to live my best life - not comparing it to others, but best for me and what I can do on a daily basis.
I have also written an e-book about self-care/self-love as many people (with and without lupus) don't take time to care about themselves and spend so much time pleasing others which can be exhausing. You can read about the e-book here:nurturewithlove.com/e-books/
For me, if I feel really down, or in pain I find the best thing to do is to acknowledge how I feel first (so as not to push it down into the sub-conscious) and then follow on with a positive comment or affirmation. If we concentrate on the negative all the time this creates stress in the body and this has a massive impact on lupus.
Thanks for your information on diet and lifestyle, I have read it and it's going to be useful
I haven't eaten wheat for years, I limit dairy intake (it makes me snotty!), I eat oily fish and avoid red meat most of the time and saturated fats. But I am still unwell most of the time and I'm looking for ways to eat to beat this lupus! I take Tumeric every day and this seems to have lifted my mood.
I use mindfulness meditation to help me deal with lupus and the stresses of it all and it's really helpful. Having an attitude of appreciation really shifts my mood, as so often when you are dealing with pain it can make you grumpy, I practice shifting my thoughts to the good things/and people that are in my life and this helps me feel alive and present -it puts 'space' around the discomfort.
I've also found that gentle exercise helps and I try to walk a bit everyday, I do a bit of tai chi, chi gong and yoga here and there, and I swim when I can. Getting outside where possible and listening to the birds makes me feel happy
Thanks for thw words of encouragement, I have only been diagnosed since last June, but I admit have been fighting it all the way, but just got to the point of total exhaustion a hard lesson learned ! I am 3 weeks in to having been signed off for 4 weeks. I will maybe not fight it as much but will listen to my body more,
I will try not to let the wolves rule my life, and learn to ask for help or just stop rather than keep pushing myself, Definatly a learning curve, and since joining this site I am leaning to understand Lupus that little bit more, and that we are not alone, which I hope will make dealing / coping that much easier,
Hi Pammy. So glad to hear your wise words. Been having a tough time recently and need to be reminded to keep thinking positively. Have spent too much time wishing others, especially family would understand.
Hi Pammy im new to the site . I have had lupus for four years . I thought your blog was great . I agree with what you said .It is hard at times but i find the excercise realy helps mind and body and i no it sounds mad but even the pain if you can get through the first fifteen mins.Thanks to all this site has realy helped keep well REBOK XX
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