I have a few medical Heroes whom I aspire to live and even die like. Micheal j Fox, Christopher Reeves, and an aunt who faced her stage four cancer with out so much as a single minute of public complaint or lack of hope for tomorrow until the day she died. I am trying to learn resilience, acceptance and gratitude now for these traits have not come naturally for me but there is some belief that they can be learned. I think I am getting closer but still have a way to go.
I am looking for some suggestions that have helped you through your journeys remain positive and hopeful. I am using some therapist assisted skills that work but would love some fresh ideas. I often love summer activities and they improve my gratitude and allow my to enjoy the moment but when the weather changes I am less able to focus on minute to minute joys. What are some simple things you do to bring momentary joy and peace to your day? Have you been able to be chronically happy through your chronic illness. I am hopeful it is possible but to be honest it is much easier when things are going well for me. And I really want to be more than my disease.
Thanks in advance.
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Roarah
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I tried taking photos. I go for a walk and everytime I stop and rest I take a picture, no thinking about it just a random picture. then I get home and put them on my laptop. some have been pretty good.
do I use my phone? I am a technical numpty so I use this old fashioned thing called a camera. My landline doesn't take pictures plus the cable isn't long enough.
Fellow Luddite here and my phone camera, over ten years old, is terrible in the sun so I too will most likely use my camera. I still primarily use a land line too. Cell is only if my youngster is away from me and I leave the house. Sometimes I use it for the gps while driving though if I get really lost. Xo
oh very pretty. I wonder if being technologically challenged has something to do with lupus and whether I can get treatment [ here I would insert a cheesy grin emoji]
I hope my reply to you're other post didn't worsen you're misery.
Thinking of all the potential ways things can go wrong is not good. It's something to be left to the Doctors really. It's not you're responsibility to figure out what you're symptoms are - even though there may be times in you're life when you have to do a google to 'help' a Doctor with a diagnosis.
I'm from Australia - and photo sensitive..... had the illness for 41 years.
Please don't let a bit of sun make you think you'll flare - and please don't let yourself be trapped indoors. While the sun's not helpful to us - I've never had any posdible way of avoiding it......and for me at least - I dont think its hurt me too much.
When I wax 15 and having a life threatening flare my idiot parents took me to the beach everyday for a month - with no sunscreen or protection of any kind - I managed to survive, and while I wasn't terrifically thrilled that they didn't listen to Doctor advice - the swimming cheered me up and made me forget about what was happening. It's entirely possible that I'm actually too blase' about the sun, but taking the right medications and good medical care was what stopped the flare back then.
Sunsmart umbrella and clothing - and high sunblock sunscreen. It's what were meant to do - but I just do the clothes and hat.
I'm still here ?
A lot of coping with this illness is purposely putting bad potential possibilities in the back of you're mind - while remaining sensible about things.
I know it's a hard to get the mental balance right. But It's so important to concentrate on living every day to it's fullest potential - without the uncertainty of the illness getting in the way of this - even when you're in limbo with symptoms and unwell.
Always plan your life for maximum joy - and let you're Doctors do the worrying.
Thankyou. I am still playing in the sun I am worried that when the summer ends I will have a happiness void. I do not ski, and now am not allowed to due to plavix and warfarin and I am hoping to find cold weather month hobbies to help spark some joy when my sailing, swimming and gardening hobbies end. I am thinking of joining an indoor tennis club but winters for me are long and hard. xo
Sounds like you're on the right track to make yourself a good life. Always appreciate what you have - my philosophy is forget about what healthy people can do - ( even though they keep telling you) and appreciate what I can build myself. When you have a chronic illness - over time you come to appreciate smaller joys - with perhaps a greater and more vivid happiness than before because you have better insight as to how valuable every moment of life is.
The fact that you're so acutely concentrating on figuring out the best way to be happy is a sign of this. So many people just drift through life in a haze because they never learn how precious it is until it's too late.
I really don’t like to preach or off load my jargon as some may see it, but I started CBT therapy 3 weeks ago. Honestly the change in me is so bright others are noticing.
I was taught to not live day by day as that way it’s too easy to wake up and label the day as bad! Make plans and stick to them which I’ve bern doing.
Also just 2 things each day no matter how small, one that makes you feel happy and one that gives you a sense of achievement. It really is working. I took my children swimming at the weekend, I wake up go to the park or take a gentle walk. No marathons yet, but I’m doing small steps and feel like I’m smiling within xxx
I am so happy it is having a great impact on you too!
I know at least one member is very upset about my raving about CBT on many posts so I too am trying to be sensitive to the fact it is vilianized by many around the world but I feel of all my doctors, of which I have way too many, my psychiatrist is the one who has saved my life after my stroke. I should also mention the neuro who suggest I see a behavioral health specialist! I account my lowering antibodies and symptom relief to my psychological improvements. I feel my body is so much calmer when my mind is calm. After six months i am a convert and will continue therapy for the rest of my life at least monthly. Right now I go every week.
I have been enjoying some summer activities as of late and I feel this is helping too and sailing and playing in a shaded pool is so much less work than my meditation work and I am hoping to find a winter hobby too. I think I might look into photography now, thanks Susannah!
I like your mention of achievement. I work for a school system and have the summer off and it has been an eye opener how much going to work every day was helping me. It had not occurred to me it is the accomplishment goal that I might be lacking. I am going to set a goal daily. Thank you! Xo
Maybe a simple exercise routine for the winter where you can start small then build as you go. Im doing that now too! Im hoping to be well balanced and in my best physical shape when im sixty... still some years off.🤯🤷♀️
I think finding a sense of meaning for you're life is almost the most important thing.
ps. Here were having a royal commision into problems with the mental health system. An early finding is that theres a gaping great difference between a good psychologist etc. and a bad one - and how much - luck of the draw is involved with a good or devastating outcomes. When I was first presented with CBT - my luck was not at all good on that occasion. But later on - when presented with better depth of personal context I could see it's value.
Is your CBT with someone who specialises in long term conditions or a general group? I’ve done the general group one locally but it really didn’t give me anything new and was very focused on depression but I’ve been so fortunate not to have been affected by depression and the group leaders couldn’t adapt their thinking to a long term condition. They asked for me to be referred to the lady who specialises but they’re not making it easy for me to access it - they’re suggesting CBT isn’t for me as I ‘don’t have a low mood.’ I want to learn strategies to help with managing the pain, prioritise, pace etc.
I’d be really interested to hear about your group.
Pip, I am in the states where I get to choose a provider. I was diagnosed with PTSD which is very commonly seen in patients of chronic illness. The trauma of my stroke set my condition off. CBT/ mindfulness is one form of treatment that works well for milder PTSD and anxiety, I do not suffer from depression. There are also other treatments and conditions. I took a long assessment with a neuropsychologist prior to my diagnosis and before what treatment model was chosen.
For pain management, I can not take NSAIDs,ACT treatment works well for me it is acceptance and commitment therapy and that combined with some hypnotic mindful videos now relieve my headaches and joint stiffness really well too.
I am not sure if you could ask for a mental health assessment prior to treatment where you are but it is an important aspect in treatment for not all treatments or meds are appropriate for all conditions.
Thank you for your reply. I’m just returning to work after 8 months off and I now seem to be responding to the hydroxychloriquine. I wanted to try and use a variety of strategies that I can draw on to help me live my life to the full despite the limitations we face on a day to day basis. I do think that the CBT will help, along with mindfulness - which I also do but the sessions i attended really weren’t helpful and actually taught things I’m already doing. Maybe my expectations were too high!
How is the HCQ. My rheumie wants to put me on it but since my inflammation markers are moderate, not high I am allowed to decide. It would be for lowing my clotting antibodies so not for symptom relief and I already take more drugs than I like too so I am hesitant about it. But my doctor says side effects are rare and the eyes being monitored keep patients from serious damage.
I have been on it since September when I was diagnosed with suspected lupus. It’s taken until now for me to have noticed how much better I am - or just how poorly I was! My joints feel so much better, I’ve got more energy and just feel more me. I realised last week that I can’t remember when I took more than the odd paracetamol - at Easter I was taking 8 a day (they’re the only pain killers I can take). I really feel diet, exercise, mindfulness, routine and being quite strict on myself has really helped as well but the tablets really have made a huge difference. With regards to side effects I’ve had some stomach pains and have felt nauseous at times but the side effects are minimal considering the benefits. I had to take a break from the tablets in March (miscommunication between the consultant and registrar) and after two weeks I was desperate to get back on them. I hope that helps.
Thank you that is great to hear. I have minimal joint pain but on blood thinners so no NSAIDs and even Tylenol is limited. Luckily I think my pain is more wear and tear than RA. I think I will give it a try though preventive medicine is usually the best medicine.
I was recently forced to do gentle excercises in a gym for autonomic problems........eventually......it became a great quick fix for feeling a bit miserable or anxious. It actually makes me feel physically strong - which for me after so many years of illness is a brand new feeling for me......some control over my body. It's made me a bit mentally stronger too. I'm actually not well at the moment - but having a fitter body makes it just a little easier.
Hate 😫 exercising - but I but nearly always feel better afterwards.
Hi, I don’t know how old are you but don’t let the condition run your life , I did and now 20 years later I’m full of regrets , I was convinced I was going to die and I let opportunities goes , I denied my son of a sibling , work changes , ending bad relationship only bc I thought with lupus I was nothing, thinking back I needed emotional help, I never heard of SLE THEN , my gp never met anyone with the condition so I relied on old medical books ( the internet wasn’t widely available then ) looking back I could’ve lived a normal life but I let the condition old me down .
I hope you are letting go of your regrets and living happily now. I too only have one child possibly due to APS miscarriage also could have been my age, my miscarriages were at 39 and 40. I just turned fifty and was first diagnosed at 23 but really only had a kidney issue that resolved for years but last October I had a massive stroke followed by another massive stroke while still in the hospital due to possibly having a heart defect ( that has been repaired now) but also I have positive beta 2 glycoprotein antibodies.
It is the stroke damage that sent me into a state of despair and I noticed every odd sensation tenfold for months. This state only started to improve with therapy. Now I am walking and talking almost at 90 percent but I find if I do not work hard at living I start to fall down the " am I having another stroke" panic and this panic halts my life. Distraction with activity keeps my mind from noticing what is not the same and has helped me but I find winter so hard to keep active with fun activities, I crave joy now and the fear of winter being joyless is driving me to hope to find a new hobby I can do in inclement weather. Xo
Dear Roarah, I trained as a psychotherapist and had been working with severely disabled young people when I was hit by a massive lupus flare in 2012 which left me 6 stone, in a wheelchair and too weak to lift a kettle. I then spent the next 6 years in constant pain. I used some of my psychotherapeutic training to help me recover emotionally and regain my resilience and joy in life, despite horrendous lupus symptoms. I had also spent time training in meditation and positive visualisation in London and I used this too. I now specialise in telephone counselling for people in chronic pain or experiencing chronic illness. Based on my own experience, CBT, Mindfullness - particular acceptance and commitment therapy, positive visualisations and breathwork prove particularly helpful. Personally, I could not be without my guided meditation practice, positive mantras and breathwork and suggest Davidji.com as a first port of call on meditation and my profile for further detail on the latter two. I am so impressed with your 'can do attitude' and resilience, with my very best regards Lily
I am so impressed that inspite of your horrible illness you were able to take your expertise and channeled it by redirecting your career to accomadate not only your disabilities but by so doing offering hope and improvement to others with chronic illness. Kudos for your resilience and turning a horrible disease into an opportunity to help others!
I am receiving ACT to help alleviate pain for with plavix and warfarin I am unable to use most safe pain medicine. It really works for me. I use a hypno mindfulness video to relief my frequent post stroke headache and it too has allowed me to fall asleep even during my worse headaches. I am going to check out your recomended website now. Thank you!
Dear Roarah, so cool to read that you are using hypno mindfulness videos to help you with pain. Davidji will help you with achieving calm and a sense of safe haven but if you are into this then I suggest that you look at learningstrategies.com, specifically at their paraliminals downloads. These are at the leading edge globally of neurolinguistic programming and left and right brain technology - you get two voices in each ear! They will try and sell you the whole library but if you drill through you will see that you can buy individual ones. Digital downloads will give you your own library and then you just need earphones. The two that I like best for lupus are Deep Relaxation and Happy for No Reason. I have had excellent feedback on previous recommendations so see how you go! With my very best regards, Lily
Thanks again lily! I just took a look at learning strategies and love what I see. I am hopeful it might help my cognitive changes post stroke as well. I do practice kk meditation in hopes of thickening my grey matter while shrinking my amygdala. I love neuro plasticity science! Xo
Gratitude is the key. Be grateful for what you have not mournful for what you don’t. I approach every morning with a cup of tea and gratitude. I know my limitations that mornings are best for activities so that’s when I plan things. Afternoons are for rest then occasionally I can have an evening out. Being positive and happy is a choice. We are put on this earth to help and serve others and when I concentrate on that it’s more difficult to feel sorry for myself. Not to say I don’t have difficult days, I do. But even then I’m grateful for the rest that I need. Some days I mourn for the life that I thought I would have, but I don’t stay there long. I wish you the best XO, Nan
I love this! I do thorns, roses and buds with my family at dinner I am thinking of getting rid of the thorn part and trying for all of us to just do roses and buds. Xo
I know what you mean, Nan. Some days I remember the young me who was always one of the strongest in class and loved getting tan. That was long ago by now. I guess we grieve the loss but are allowed to feel it and then move forward, right?
In the beginning I thought I was going to die. As a matter of fact I did for a very brief moment when my heart decided it was just going to stop beating and start up on its own again. This gave me a whole new outlook on life.
I’ve realized that everyone is given some major flaw that they have to face in life. My goal is to live the best life possible with what I have. I think many people don’t realize living your best life is not just focusing on what you do have but also what you don’t. To know yourself and to be most honest with yourself and your boundaries will help you build habits for your own peace and not based on what others think. I think a lot of what gets us is how others perceive us. We become hyper aware. It’s not healthy. You must live your best life according to you. I am tired 24/7 but I just push through. I find exercising does help. It’s a complete mental game some days.
A book I found most helpful was Sick and Tired of being Sick and Tired. It delves into the psychology behind chronic illnesses and how it affects our everyday lives.
I find poetry and music help me escape briefly but it’s only a bandaid on a humbling lupus life.
And lastly, most things on this road are temporary! That always keeps my hopes up.
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plus the cable isn't long enough.
Predisolone help please
Lupus is so underestimated by so many people.
Pip update......
Merry Christmas/ happy New Year and an update 
