Illness, malaise, and trying not to disappoint others

[tmas]

Long story short, I got long covid after my second bout 5 full moths ago. The experience of being sick was itself terrifying, I had a few days of being unable to move my limbs, sciatic pain, and for a day or two couldn't even speak and struggled to breathe. I felt like I was wading through sand, and wasn't physically able to ask for help when I needed it. I just looked like I was sleeping it off from the outer. I honestly think I had some sort of post traumatic response to this, I'm still trying to move through it and it hasn't been a good last week or two.

I'm over the worst of the debilitating fatigue, but I still have a host of weird bodily pains and symptoms that interfere with my daily life. My partner, who nursed me through the illness and is generally just the most beautiful person, had a lot of trouble understanding what fatigue is as he's never seen it before and didn't realise the extent of my illness because I'd hidden it.

My problem is that when I feel malaise, I try to hide it to not be a burden. I've made progress unlearning this since moving in with my partner but it's hard wired. I start to observe him interacting with my behaviour, and the dissociated feeling eats at me. I feel like a disappointment. I try to push through and act fine, but he can obviously see through it and before we discussed this openly he interpreted the detachment as disinterest or withdrawal from him on my part. 

I have OCD, in my teens it was severe enough for several hospitalisations, something else that has followed me. I had health obsessions, complicated by the fact I have an autoimmune disease. I started having panic attacks again in the last few months, I was brushing off the "minor" ones but I had a full blown hyperventilating one a week ago after I got in my head about something and it terrified me. 

I have body pains that are pretty constant, but sometimes quite acute. Today my neck went into spasm so I couldn't join in with family - he was very worried obviously so I downplayed it, and then I could tell he was disappointed. He suggested just resting at their house, but I know my pain would have gotten worse if I tried to go. I don't know how to handle this feeling that I'm failing those I love when I'm so overwhelmed by the discomfort I constantly have moving through my body.

Just looking for some wise words. 

[mmMekitty]

Hi tmas

I'm sorry to read you have been dealing with long COVID & other problems do do with anxiety. You mention ODD & Health Anxiety, as well as concerns about how your partner percieves you & feeling like you would be a burden if he needs to support you, to care for you, to support you through these difficult months, as you continue to have symptoms relating to Long COVID. It seems to me you ramp up your own levels of stress trying to hide what you are experiencing, trying to be 'normal' for him, while his levels of stress are increasing as he can see through your mask, & so feeling you are not letting him in. It seems to me, he wants to help, he wants to be someone you can rely on.

I'm sure it's not been easy for him to look on & see your struggle, to see how debilitated you are, but not yet know the full extent of what you are experiencing. Do you suppose he's asking, "how can I help my tmas? Same as if it was him who is experiencing what you are, how would you feel? Painful as it might be, wouldn't you rather the two of you being able to talk about what's going on & work on whatever the problems are, together?

From his perspective, I imagine, not talking to him might be saying to him that you don't trust him to care, or you fear him not being able to cope, or you fear he won't stay, or... I don't know really, but many thoughts could be there, while you are hiding what's going on for you.

As for those ongoing symptoms related to Long COVID, all I can suggest is to keep in touch with your GP, & be open with them, too. Remember, since Long COVID is new, it could be difficult for our health workers to deal with as well.

I wish you all the best,

Hugzies

mmMekitty

[tmas]

I've had these conversations with him and I'm working on being honest, I'm doing a good job of being open I think? I can tell it gets him down to know I'm unwell though.

I think I've always hidden when I'm struggling, no-one tended to believe me when I was young and then I was blamed for being dishonest when it all came to a head. my child solution was to hide even better, and unlearning this is the kind of thing that feel world ending on some primal level, even though I know it's absurd to feel that. 

I also have this weird thing where talking about it makes it feel more real. Though the symptoms are pretty bad at the moment, and constantly uncomfortable. It's hard when my mind feels an improvement but my body yanks me back into this feeling of distrust. I want to talk to my GP but maybe I'm avoiding it? I'm justifying it by avoiding the costs but my partner's really pushing for my to get the attention I need. It's going a little rough at the moment.

[mmMekitty]

Hi tmas

I apologise, for this response being so late.

It takes time trust & a very special  person or two, to allow us to see that they are trustworthy in order for us to begin to open up. Trust involves risk & being vulnerable, which implies allowing for a feeling of danger & possible injury, emotional or even physical. We don'twant to be hurt again. That's understandable. 

So, we need to rebuild our own sense of self-worth, some healthier defences resilience, which is what keeps us from feeling totally devastated when someone disappoints us when we  trusted them.

I think a therapist you have built up a good relationship with would be the best place to start. A GP you have been seeing a while, too, one who seems willing to listen & hear what you ask, even about the ordinary of things, would also be good. These people are different from friends, in that you don't have an emotional tie between you. If they are able to maintain a professional manner & do their jobs, then the risk of your concerns not being taken seriously or dismissed, or that they will not be able to cope with what you need to talk about is less likely. You are not responsible for how they feel about it.

I learned from my PDr. I'm not responsible for his emotions & he will care for his own emotions, which allows for me to be more open about how I'm feeling & thinking about anything.

Even during Jan 2023 I wasn't thinking about this in this way. Now, I am thinking, one thing I would want to do is to reassure any friends of mine, who I confide in, are aware that although I want someone to hear what I'm going through, I don't expect them to take over responsibility & try to fix it. My problems are mine to try to solve. Although I like to hear any ideas they might offer, because they may have a different perspective, & see something I didn't. 

I have been thinking of you & hope you've been feeling better & stronger since I last posted.

Hugzies

mmMekitty

[tmas]

Hey, I'm replying late too!

I did end up going to the GP AND restarting therapy. The GP did a bunch of tests, she was worried that I had lost heaps of weight for no reason +digestive issues + oligomenorrhea + malaise/ anxiety, but she also sent me a link for a really odd CBT website (even though I told her I dislike CBT for personal reasons) which I tried and found super patronising, and then she went on maternity leave without telling me before I got my results back from the tests.

I ended up calling reception after no results for 2 months and reception told me she was on leave 😕 tests showed that something weird was happening though it wasn't major, and it seems was related to EBV (glandular fever), some kind of reactivation that messed up my liver and caused fatigue, and the health issues were triggering my anxiety big time. There's no real resolution on that front, I'm just kind of trying to help myself in small ways.

Therapy has been good, every time I restart therapy it's like a whole different experience, even though it's with the same therapist as last time. I'm glad to report that I am doing better though, I'm doing the May50K double up, I'm eating as much as I can (not always as fun as it sounds haha), and doing therapy to try to understand and comfort myself. Socialising has helped too, it's always a comfort to remember you're part of a collective.

[Eagle Ray]

Dear tmas,

I relate to your comments about CBT because I too really haven't liked it nor found it helpful. I don't know if this is how you experience it, but I find it is all about cognitive restructuring while not understanding the whole body and nervous system. It's a top-down approach, and I have found I have to work somatically from the bottom up, if that makes sense. So with my psychologist I do somatic-based work and it has been far more successful for me. There's a number of somatic therapies out there - sensorimotor psychotherapy, Hakomi and somatic experiencing, among others. I've also found help through physical therapies such as Bowen therapy which can help to readjust the autonomic nervous system. (Having said that some people do like and respond to CBT).

EBV is known to be a precursor for many conditions, such as fibromyalgia and chronic fatigue syndrome among others. I was thought to possibly have it when I was 13 though it was never conclusive, but I developed fibromyalgia then which I have had since. I've read a lot about it and apparently EBV is an epigenetic modulator which means it can actually change gene expression (not the genes themselves). The good news is epigenetic change appears to be reversible and this is what I'm working on with my own health.

I'm glad therapy has been good and you are being helped by socialising as well. I have found that having contact with others can really make a difference. From what I've learned it actually changes the nervous system through co-regulation which we (and other mammals) need for health and well-being - that the process of positive social interaction literally changes us physiologically. It's so important to remember we are always part of a collective (which I sometimes forget myself).

I hide my struggles too so I very much relate to that, including worrying that I am letting others down in some way if I indicate I'm struggling. I hope you can increasingly feel safe to open up more. I'm slowly learning to do it for myself. Take care and wishing you improved health and healing.