With having Lupus and a few other conditions, being on steroids and suffering from anxiety and depression, not having a job or voluntary job, I find that I just can’t stop feelings of disappointment from arising when ‘things go wrong’. People cancelling meet ups, people cancelling coming to your birthday, me getting ill and having to cancel a flight and trip, these types of disappointments take me from a high point of excitement to a real low. And then I resent the person a little after or am very down on myself for failing to get well enough to travel or go to the party I said I’d go to. Real highs and lows, even when the rest of the time might be much more stable. Does anyone have any tips on dealing with disappointment? I know I’m not the centre of the universe and everyone has their own priorities and when I get ill it’s not my fault, but I really want to be more resilient when it comes to these type situations.
Thanks x
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LilyMistri2
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I’m so sorry to hear of the hard time you’ve been having, everything you describe is so very real with lupus, it’s the vicious cycle we have to deal with and even more difficult that it’s out of our control, I’m sending you lots of virtual hugs and love.
When I’m in this space as I’ve been many many times, I lean into my faith and self compassion, I remind myself that what I’m dealing with is very very hard and it’s a blessing that I’m here to fight another day. Everyone that deals with a chronic disease is a warrior, we are stronger than we give ourselves credit for and courageous to face each day.
You are far more resilient than you think, that you so eloquently share what you’re going through in itself is bold and resilient.
Please spend these days deep in your self care, even little steps can be impactful, I take simple steps like walking bare feet on grass and tell myself that each sensation reminds me of the privilege to feel.
You’re in my thoughts and I hope this cycle passes by quickly 💜💜💜
Thank you so much for your reply! I felt your words deeply and they gave me companionship. I was comforted to read that you, and others as you reminded me, do go through this because of all the things we already go through. Your list of self compassion things reminded me that there are things that could make me feel better and if not, at least i would be looking after myself and treating myself to some self attention. Although I read your message first thing the morning, I had to run out to the hairdresser and after, in the spirit of your suggestion, I went shopping alone for a present for someone and I had an ice cream and tried to stay in the present. Although my mood didn’t lift, I’m too far gone currently for my mood to lift quickly, I prided myself that I’d gone out and done things to keep things moving. The current thing I’m upset about still needs some days to sort out, but support on here is reminding me that I must put myself and my health first when tackling this situation. Thank you soo much for your reply. Xxxx
Hi there. I really empathise with you and feel and indeed suffer from everything you describe so profoundly. Unfortunately I have no real answers. I do know the probable cause of mine which is childhood trauma and have had it present itself over the last 54 years. Since I have been taken off the medication for this, my feelings have become all of your above plus a massive dose of anger which I deal with as shame because my sort of day job is, believe it or not, a yoga teacher. My only suggestion and it really is only a suggestion that helped me initially was to try the NHS Mental Health Team. Of course there are massive waiting lists, but I was given the telephone counselling at first which really helped because I couldn't see the person so I could really let myself go. This was 12 years ago when they first prescribed the anti depressants (are they called that anymore?). They really worked for me and helped/gave me time to process my feelings at the time they were happening. Now I am no longer taking them, I have become very over reactive again. However, this reply is an attempt to let you know that you are not by yourself; your feelings and behaviour are valid in my opinion as are mine on a good day. I'm sure there are others on here who may have other suggestions. My rheumatologist did say that Lupus can stimulate mental health issues. Not sure that helps though. 🙏 I sincerely hope that I have not made things worse for you. That is not my intention 🙏 My finger has hovered over the "reply" button for ages xx
Thank you so much for your reply. I really appreciate that you chose to reach out to me in my hour of need. I got very busy doing things to distract myself, hence no immediate reply from me. I read your message the next morning and it comforted me and gave me ideas on why this can be happening to me. One, as you say the lupus, 2, the drugs over adrenalising when we don’t need it, 3. trauma, I’m going to look into this one now, as I haven’t explored the relationship between trauma and disappointment before in any of my therapy and lastly your message got me thinking about conscious living and how I haven’t really made proper in roads there, except the time that I did yoga, which I must take up again. Thank you again for your support. Xx
My lovely person, I am so glad I may have just given you some places to go to try and find a safe and happier place. I had not given trauma a thought until I was 52, 12 years ago and so desperate that I self referred myself to the phone consultations. This was the place that I was told that why wouldn't I have trauma after my complicated childhood and knew nothing else as I thought everyone's childhood was like mine. I always thought it was me. Please do ask for help with trauma if you need to though as it can be complicated and tiring. Yoga has literally been my salvation both for my physical health (spinal surgery 8 years ago and my mental health. I'm also learning to work with distraction (a new learning for me). Most of all, please never worry about having to reply to me particularly, but huge thanks for doing so, I know how difficult it can be when you're in the grips of whatever it is and means to you. Namaste 🙏 xx
Hi LilyMistri, I can so relate to your feelings of depression and disappointment. For me, I feel each letdown more acutely because I have lost so much already, therefore each extra loss hurts so much more. Sometimes it feels like we have very little joy left in life, so we cling extra hard to those holidays and meetups and trips away. It’s hard to cut ourselves—and other people—some slack when this happens, so all I can suggest is extra self-care for those extra disappointing times. Cake, movies, music, cuddles with the cat, snuggling under a blanket, tea, candles—every little bit helps. Hope you feel a little better soon x
Thank you so much for your message. On reading it, I engaged in self-care immediately that day and went shopping without anyone else and I bought an expensive ice cream in pistachio flavour, which I savoured and enjoyed very much. And because your message was fresh in my mind, I said the words ‘self care’ out loud every time I felt myself sliding downwards. Your list of things to do was very helpful too and it was nice to imagine the cat, which I don’t have, but which I can see why a person might have. I will make a list of self care ideas. Thank you so much for your support. Xxx
It thrills me so much to hear of your self-care indulgences: the pistachio ice cream, the solo shopping, the ‘self-care’ mantra, and the list…how wonderful that you have so many options! I hope you continue to relish them. Every little bit counts!
Its all part of Lupus sadly, having Lupus for over 31 years now, I really resent not having my former, sporty, walking life, but thats the way it is, I dont go anywhere these days x
Thank you for sharing with me. It reminded me of how we constantly have to reinvent ourselves, to find new things to do and new ways to be to replace those that we have lost. I find my imagination is slow in this department. I think I’ll keep reaching out for ideas. Thank you for your support. Xxx
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