I recently signed onto the Visible app and wearable, which allows you to track your heart rate, HRV, log symptom severity and get signposts as to when you are overdoing it. Even after having seven years of lupus (and I now have long Covid), I completely didn't get that a crash could come 2-3 days after overdoing it, and I can now see when I'm overdoing it because my heart rate shoots up even doing the slightest thing, which indicates when my body is under stress.
Unfortunately, since using it for a few weeks I've noticed that my symptoms worsen when I am in proximity to my partner. It's quite easy to track because he's away for three days a week. My heart rate goes up (and not in a good way) and over time I spiral downwards. By day three of his absence, the indices start to normalise and I start to feel better.
Does anyone else notice this, and what did you do about it? He's not a bad person and does loads around the house, but is quite anxious and stressy and I think this puts me on edge. I've sort of known this but I now have direct evidence.
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Treetop33
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Bear in mind too that it is a big change when you have become used to being alone and the only person you have to take into consideration and then suddenly "your" space is "invaded" and your whole lifestyle is affected. Alone at home I am never listening for what is going on, when I have visitors I hear every sound at night - partly because I was like that during my husband's final illness and knowing there is someone in the house takes me back.
Does anything else change when he is there? What you eat and drink, times you do things, how well or otherwise you sleep? Has the heart rate increase been looked at by a professional? When I have episodes of arrythmia, I feel exhausted for longer than you'd expect after it normalises.
Thanks for replying. Yes everything does become more hectic on one level (he crashes around doing the dishes or something whereas I tend to leave them until I feel rested enough). And the weekends involve more cooking and food prep, because there's another mouth to feed (during the three days it's just me and my daughter). But he is also quite stressy and negative, and definitely not one of those 'you feel good around them' people.
Mind you, it took me a long time to realise how my affect, affects others. I don't think he gets it really.
I'm going to have a CT scan on my heart. Though the docs think I'm probably alright, they are not taking chances as I have LC and APS.
Hmmm - do see where you are coming from. It is everything isn't it? I am very aware of how relaxed I make life on my own - no-one to object to the toaster sitting on the worksurface as I am intending to use it again later, Or looking in the fridge to see what is there and having a less planned plateful for dinner. I don't quite clean for the cleaner - she only does vacuuming plus one main task like bed linen or washing the floor or a proper kitchen block clean (I have a tiny kitchen block in a large living room) - but I don't put things away when I'm on my own! I need visitors to spur me to tidey up more than that.
Yes I know what you mean. Perhaps it's a life after menopause thing, where one's priorities change? My ideal circs would be to have a tiny house with no stairs (grr) on a plot of land and live by myself, with a veg garden (as I also can't stand being indoors).
It isn't just being around other people either. I'm fine with my daughter - it's all quite harmonious.
But I don't think she would appreciate me taking her off without her dad in tow, just because of the stress. Too tricky! x
When I moved here to Italy, we sold our big house plus garden, not big but more than a pocket-handkerchief, to a couple just like you except no children. They had met because they lived next door to each other in small terraced houses, he was away off-shore for 6 weeks at a time and back for 6 weeks. I couldn't understand why they wanted to change the option to retreat to your own space and lock the door!!! They wanted a garden. Absolutely the hardest thing about getting married for me was the loss of "my" space. And thinking about it, "my" time. Husbands and children take you over don't they? Later, living in Germany, I had had my own office that doubled as a spare room, he had his office in the room next door. We came back to the UK - and suddenly I had to share an office/study in the evenings and weekends as my freelance work was 24/7 on-call and he lived in front of his computer when not at the hospital. It drove me absolutely nuts ...
And he didn't get it either. I will never forget me sitting at the computer bashing out a translation for a short deadline, had been there all day. and he walked in at 6pm and asked "What are you making for tea?" I replied "What are YOU making?" He thought I was joking. No takeaways in rural Scotland 30 years ago ...
Ha yes I recognise that one. Having your own space is soooo important, even if it is just your own office. Maybe I need a shed in the garden to sit in while I'm plotting a future escape?
Yes I have found that once the hormones subside, men just seem like hard work. Sometimes I meet an attractive man, and then I just imagine picking up his socks or having to do all the emotional support work or being talked down to and I think, ugh, no thanks.
I would treat it all as a bit of a joke, except that I think it might kill me.
"once the hormones subside, men just seem like hard work"
You can say that again!!! Wasn't helped in our case by himself developing a nasty cancer in his early 40s. He survived and to all intents and purposes made a miraculous recovery - just deaf from the chemo and only one lung after major surgery - but they didn't go much on the pastoral care for patient or family back then: you survived? Get on with life then. My marriage was one of two distinct halves, with a very different person for the second half. We were together for over 50 years but I missed my golden wedding by 2 years. That was a very strange day - absolutely nothing instead of cards and cake and party. But hard work I don't think I want to repeat.
I am sorry, that sounds so hard. We don't think about what we're signing up for, so we? I'm glad you have a life you enjoy now, or at least is on your own terms (autoimmunity aside!).
I know for a fact my partner didn't appreciate me getting an autoimmune diagnosis and having to do much more of the heavy lifting. I definitely feel the pressure of resentment, though I understand it. He says of himself that if he got a serious disease he'd just let himself die, and I can't help thinking that's what he thinks I should do too, even though he denies it (I disagree - I have rather a passion for life).
Delightful! I think mine had less to do for me than I did for him in the end, Don;t get me wrong, don't think I would have changed it. Just wouldn't risk a repeat!! Now I am at the "can't live here alone forever" stage - not fair on the kids. But the weather in the UK compared with here - oh dear!!!
Yep so true. Perhaps they can come and live near you, which would be very Italian? I am certainly considering my location depending on who wins the next election. I don't think I can survive a repeat of the last 10 years, literally. I'd love to take my parents with me x
They work in the NHS - they are needed! And here they need to speak both German (which they do) and Italian (which they don't) as well as having far more responsible roles in the NHS than they could expect here - they do things only doctors do here. Having not lived through the last 10 years in the UK, I think I can manage a few years there - cushioned by having a granny flat in one daughter's house to reduce the finacial load and she is a nurse - has its uses. I shall build myself an executive shed (what a friend used to call a conservatory) with a view and not watch TV ...
Won't be just yet - still trying to get my head round it. Almost the entire family has worked in the NHS at some time - both daughters (nurse and paramedic/ED practitioner) and their (ex)partners (ambo service), one grandson is a nurse, another is studying pharmacy and the grandaughter has worked as a carer and now in a school with disabled kids. I worked in the labs/research and my husband was a medical scientist.
I get this happening too after various social interactions - Meetings in groups, social gatherings, often when they go on too long.
Afterwards , if I don't come away 'a shaky mess', then maybe the day I'm flaring.
The response for me can be quite immediate. Affecting my nervous system or my gut.
It parallels what used to happen if I went out in the sun unprotected before I knew anything about connective tissue disease.
Conclusions
I feel I'm healthier if I stay in my own space. Caring for my elderly mum across town, I learnt strategies and new ways of interacting. It has taken a fews years for things to improve and find others to help.
I recently came across this clip that I found useful. It has info on pacing and explaining our situation to others.
I thought family and friends would understand straight away. It has taken two or three years.
Sometimes adjustments then happened, and other times friendships changed immediately.
It is a 'weird science' and I think there could be more research on all of this.
Thanks for posting on such an important and interesting subject.
Thank you for this. I sometimes wonder if our illness (and now my new LC illness) 'unburies' our reactions when interacting with others. I grew up in a family where you had to be social and I learned how to do it after much teasing and humiliation. Perhaps I'm just uncomfortable with it.
On the other hand, not everyone has this impact. Some people are just chill or kind and therefore easy to be around.
I had covid in March 2020. Everything then changed for me when my covid became long covid, and then the joint symptoms I had in 2019 extended to full blown systemic flares.
Previously I threw myself into everything. It has been a big change. It is sad losing the social side, and concentrating on things that don't cause flares. We are all discovering new ways.
Yes Covid can definitely set of flares of lupus (I've started getting butterfly rashes). And it definitely does something to our nervous systems. And it's hard to disentangle that panicky feeling (which is definitely physical, but...) from our obvious isolation as susceptible people who still have to be careful. Covid ain't over for us.
"Which of my long COVID symptoms may be related to autoimmunity?
While many symptoms are associated with long COVID, some of these symptoms may be more suggestive of an emerging autoimmune disorder. Individuals who experience new onset and persistent positional dizziness, heart palpitations, sweat dysregulation, gastrointestinal symptoms, neuropathic pain, unusual rashes, new one-sided weakness or numbness, should seek an evaluation for an autoimmune etiology of their symptoms.
What treatment options are available for long COVID autoimmunity?
Depending on the long COVID symptoms experienced by the patient, treatment modalities may include changes to daily routines, slowly increasing physical activities, improving diet, optimizing sleep, and considering symptomatic or disease modifying therapies that are targeted to the organ systems affected in the individual patient. For patients with emerging or worsening autoimmune disorders, immunomodulatory treatments are being evaluated.
What research is being done to understand long COVID autoimmunity?
While different causes have been proposed to explain long COVID, emergence of autoimmunity is thought to be an important driving factor of long COVID. Research studies on long COVID autoimmunity are focusing on understanding:
What the different autoantibodies that can contribute to long COVID are and whether these autoantibodies may be transient or persistent over time
How types of different immune cells, such as T and B cells, neutrophils, and monocytes change in response to SARS-CoV-2 infection
Whether there is re-activation of chronic viruses post -SARS-CoV-2 infection, such as Epstein Bar Virus (EBV), the virus that causes mononucleosis
How the balance between our gut microbiome species changes in response to SARS-CoV-2 infection and how these gut microbiome constituents influence the rest of the body"
****************
UT Health Austin video
'Understanding Long COVID: What Every Patient Needs to Know'
covers neurological and inflammatory responses.
7 minutes 20 seconds in discusses Connective Tissue Order, even if not really developed symptoms fully yet, predisposing people to Long Covid
10 minutes 20 seconds discusses inflammation of the brain in some and also of peripheral nerves in other patients.
Unfortunately I can't copy over a YouTube link that works for this but can find through Google
Thank you, that's really interesting. My dsdna antibodies doubled after recent Covid, but all the rheumatologist said was do you want to try upping your pred or hydroxy dose. Other than that, they referred me back to the GP, who is of course overwhelmed and lacking in specific expertise. So weirdly, I'm left by myself to try and work it out.
There is a really great podcast by two LC women, and they interview medical researchers and doctors on LC. Really worth a listen. It's TLC Sessions - Living with LC.
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Anyone had these treatments for heart inflammation and fluid on heart? 
Awful palpitations! Does anyone else suffer from this? 
Steroids and Increased Heart Rate
failed dla appeal :(
