So, we are all fully aware that stress can be a major trigger for Lupus. However, I was wondering if anyone who has a naturally permanent stressful life has had any success in managing their symptoms at all?
My life is majorly stressful due to being the main care giver for multiple family members. I can't remember a time when I wasn't stressed, or a time when my lupus wasn't flaring.
Just as some more details in the stress involved, I have had to get my dad sectioned 3 times just in the past 2 years, and my brother once in that time. My autistic teen sister has a newborn baby, and she relies on me for all life admin type tasks, lots of form filling, advocating etc. My mum is also mentally ill. Even without the sectioning and my legal responsibility there, the level of emotional and intellectual care day to day that 3 severely mentally ill people need is excessive. I essentially have to do all of the advocating, emotional labour, life admin, therapy, and day to day tasks of reminding to take meds, encouraging to eat etc. On top of this, my other two siblings, (plus both my parents) are in financial hardship so I am also working 32 hours a week to keep us all a float. Obviously something has to give.
I am barely managing mentally, let alone the impact on my physical health. My Rheumatology team are incredible patient and understanding and have had me on high dose steroids for months each time, with barely weeks between of being on a low dose before having to go back on to a high dose due to a huge flare. I've even switched from Methotrexate to Mycophenolate in this time, and now am up to 3grams myco a day from 2grams.
However, they have reiterated that all the medicine in the world will not make the same difference that reducing my stress levels would. However, it's just not plausible, given the nature of the circumstances I am in.
In general I am a very "zen" person, and situations that would otherwise be stressful do not bother me. However the sheer number of things on my plate leaves it impossible to not feel the impact of losing a lot of my time and energy (both physical and emotional) to other people's needs.
Any advice or wisdom would be greatly appreciated.
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eescvc
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Oh yes, my stress is constant and overwhelming. Although, my consultants bar one, have not been compassionate. No fault of their own but probably due to a lack of life experience.
I now have massages once per week (on a student day, reduced prices) and I utilise the services of the Samaritans when things are really, really bad and they have been amazing. Although, after recently being referred to Cardiology, I realise now that I can't eradicate the stressors and I have zero immediate support but I'm trying to incorporate balance where I can and not to beat myself up when I am overwhelmed and the stress has obviously triggered my lupus.
Unfortunately, due to the majority of the consultants not understanding, it has made things rather difficult managing my symptoms. So, I rely on the ones that do genuinely care, and we try and think of pathways within the NHS that might be able to help instead.
It's a tricky one but to answer your question, I havent got a solid solution but just going to have a (very light) massage for one hour - even during a painful flare - is my reset button and my saviour.
Thank you so much for your thoughtful response. I'm sorry to hear you've had bad experiences with your consultants.
Weirdly, I just signed up to be part of a local carers group and they actually offer massages for free as part of their range of respite activities. So this is very plausible for me.
I hope things manage to get steadier for us both! Thanks again
Goodness me what a lot you have on your plate!! I’m so sorry to read what you have to deal with on a weekly basis, it sounds like you manage remarkably well and so your best for your family and I wonder if, with their struggles, they can’t always show their appreciation but they are lucky to have you. It sounds like you don’t have time to fall apart and just have to be strong because there’s no other choice and I’m not surprised you have a high stress tolerance! I do find a mindfulness approach helps with stress - where you focus on the here and now rather than changing the past or worrying about the future - there are a lot of groups/ structured 8 week programmes to teach mindfulness skills if you can fit one in! I also love massages to help me relax. Are you able to take care of yourself physically by eating well, getting fresh air, some light exercise? This should help. Also having some down time from family difficulties - can you ask for help? It sounds as though the carers group and rest bite is a good idea. You need time to fully switch off from the responsibilities of caring for others or you’ll be in a constant state of fight or flight / ready to jump into action. But I know that must be very difficult to switch off your phone even for half an hour of peace? Do you have anyone to talk to and offload your worries about your family etc as that may be one way to disperse some stress elsewhere. Wishing you lots of peace and calm x
Oh my goodness eescvc you certainly have a lot on your plate and so feel for you - you are an incredibly strong special person to deal with all your family issues- wish I could come and give you a massive hug.
I find when I’m stressed is to meet a friend for coffee to talk over my stresses and really does help me - have you got a friend you can talk too ?
I’m sure your family all love you and are very appreciative for all you do for them, but you do need time out for yourself .
eescvc you are amazing to have coped with all your family's difficulties. So impressive to have held the family together like this, but what a cost to your own life and health.
Echoing suggestions of carving out time for a coffee with a friend to offload some stress, also regular "me" activities such as a massage. Worth spending time analysing what you want time for, for yourself; a hobby, a group activity away from home/family/work? Or a daily walk/protected hour? Then brainstorm (with your friend/confident) how you can achieve that protected time.
I had to "re-educate" my mother as to when, or even if, I would see her every day, and what I would do for her or with her. It made a huge difference to my stress levels and she's become more independent, learning she can get out by herself and make small efforts to meet people (My dad died during the pandemic). It's been nothing like the situation you're in but I've found tiny incremental changes, and coffee with a friend to offload, have added up slowly to being in a better place, with protected time for me, my interests, and self care.
Hope you can find support and get time back for yourself. Xx
I have read your post and feel overwhelming concern for you. Do you get any support/ respite? Even a very healthy person would buckle under such stress. Your local Adult Social Services can conduct a carers assessment for you. They can then offer a package of support for you which can include services for your family to ease the immense stress you are under. Getting a carer to allow you to rest, day care or activities for your family, support for caring for the baby, each area will have different types of service. Also Mind have advocates and can provide much needed support for your family which would ease some of your responsibilities. It is hard to ask for help but you need to for your health and sanity. I asked for help for my husband who was struggling in a very stressful job whilst trying to care for me. I have a carer nine hours a week which helps us both. I sincerely hope that you can get the help and support you need xx
I am currently trying to increase resilience to stress after having a horrible flare after a stressful car accident. I used to think I can't do much since life is stressful no matter what, but i realized there is a way to become more resiliant to stress. Things that help the most are medication, that you can try with psyciatrist help, then regular CBT sessions, and most recently I found breath exercises most helpful. Stress response is managed by autonomous nervous system so you can't consciously influence it much, but breathing is managed by both autonomous and voluntary nervous system. By practicing breathing exercises you can influence the autonomous stress response to calm it down and help yourself have less flares. So you want to practice and while doing stressful stuff pay attention to calm breathing i stead of shallow breathing. Hope you find some of this helpful.
I am so sad that you are going though this in your life, at the same time I am very angry at the social service, mental health resources in your county/state. I do not know what country you live in but all that you are doing for your family should be done by a community mental health clinic and social services. I hope you do not live in England where I heard taxes are so high--where does all that money go.
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