Things we let go of
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This is a tough one for me this week. Not sure why but the whole process of letting go is creating a real struggle for me at the moment ... and the funny thing is before full time caring I was a yoga & meditation teacher for over 10 years greatly dedicated to the practice of letting go LOL .... now not even the catch phrases that were solid supports for my students or myself are working.
Why the resistance at the moment? The truth is ... there is so much emotion and hurt around how much MECFS demands on people and their loved ones ... how much it demands of letting go. My partner, bless him, has become the master of redefining himself. It seems of late that every couple of months he lets go of something that he loves due to declining functioning then replaces it with something else in an attempt to keep him inspired. Know that this is extremely hard for him so need to manage my emotions around this so they don't layer more hurt and frustration upon him. We are open and we share what we are going through but am noticing the need to find other avenues to really address the emotions associated with this continual process of letting go.
There was a tipping point the last week. We finally agreed to sleeping in separate rooms. Something we both have resisted for so long as we love cuddling as we drift off to sleep and as we wake in the morning. But due to the dreadful sleep disturbances of MECFS and how this cascades down onto the other symptoms of this disability, we finally agreed to let this also go and set up a very healing sleep space for Damien ... one without me in it.
It is funnny , as know it is perfect timing. Was craving more time in the meditation room, my heart was yearning to start and finish every day in this space ... and now since my bed is in this room this is actually happening .... a comforting confirmation from the universe. Also wasn't really aware of how much my sleep, hence my energy levels, were being impacted .... after all I am a great sleeper so didn't think the constant red light or having someone awake in pain next too me every night was actually disturbing my sleep. Am starting to slowly feel more energised. And as Damien said "There is no point both of us being impacted by bad sleep."
So have been accepting this new situation, have been acknowledging that there is a sense of grief around this and have validated that this new situation is right for us but I don't need to pretend that I like it . Was managing this okay but then found out some sad news ... which impacted me much more then it really needed too.
Our favourite band is OKA, a queensland sunshine coast speciality. Their music has been pivitol over the 16 years of this little family. My son first tranced danced to this band when he could only just walk. We use to love going to their camp out music events and seeing them at festivals, back when Damien's MECFS was mild. However over the last few years have put off going and seeing OKA. Damien had no capacity to see them so reasoned to myself that I can't go and see OKA without Damien, it just wouldn't be the same.
Then on Monday found out that Stu - the main man and the real spirit behind OKA - had died due to COVID. Know this sound silly but really feel like a part of me has been forever lost. That freedom that came from barefeet drumming on the earth whilst the vibration of Stu's dig cleansed every cell of my being was so healing and divine.
This was the tipping point for me .... am not ready to let go even more of the things that nourish me and bring in joy. Wihile really sitting with why this has upset me so much came the realisation .... so much as been lost in our life. From this a real question arose - how much as a partner, as a best friend, as a lover and as a carer do I need to let go ... letting go of things that I can exactly still do but can't and not just because of being a carer but because my heart hurts too much to do them alone, where is the balance to this?
Really have no idea. MECFS is so isolating and it is so easy to ride this wave. MECFS is demanding and it is so easy to hear and act on these demands over everything else. But do know one thing from this long journey of standing by my partner's side. It is my light that fills his days. It is my joy that brings him inspiration. It is my laughter that soothes his pain. And it is my gentleness that brings him respite. For these things to happen I need to keep connected to things that fill me full, to find the balance of letting go and holding dear whilst accepting that how these things look are different too how they use too.
Thank you so much for bearing the long read ...... there is a sense of lightness from sharing this. Would be a blessing to hear your inputs, views and journey around letting go as a carer.
Once again thanks
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@vicki-murtagh I am sorry to hear about all of the things you’ve had to let go. Can relate to the loss of a person and memories that sustained you ie. in your case, the band member. Sorry for your losses
I’m low on cognitive capacity atm but have been reflecting on your post & want to say something I think you may have already expressed. That it’s important to maintain your sense of self, prioritise nurturing yourself as you do, your partner. The oxygen mask analogy comes to mind.
I’ve been a carer for myself and a dependent family member who lives with me. For many years we soldiered on, with me working and caring, with very little external support. Eventually, unfortunately, I was unable to work any longer.
When I look back over those years, the support that consistently helped me maintain my sense of self, and helped me cope with loss, was via a mental health care plan that supported my access to a somatic psychotherapist.
I’m not suggesting that you have a mental disorder, just emphasising that mental health care plans are for all sorts of reasons, including how to cope with grief & loss.
This is the way I coped, knowing there was time set aside and support available just for me, during these appointments.
Wish you & your partner all the best 🥰
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When I read your story @Vicki-Murtagh I thought “oh this is for the Carers” but then I realised, like @Andie I am also a Carer for myself and my husband. We both have disabilities which in some ways is good as I haven’t stopped his life goals, and visa versa. We manage to cope and get through each day but that’s about it. We used to enjoy short road trips but the most we do now is half an hour up the road for appointments.
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@vicki-murtagh Hi Vicky, this is beautifully written. I read it a couple of days ago and I have been thinking about it so much because a serious chronic illness causes so many life changes and they are so hard.
It is easy to think of 'letting go' like opening your hand to let a balloon float away, or a bird to fly free. But isn't it so often a messy, ugly crying, snotty, angry, screaming thing.
It isn't just feeling of loss, it is so easy to feel rejected.
And often it isn't just the thing that is in the world, but it is all about how that thing is integrated into our feelings of worth, or safety, or comfort, or our sense of who we are.
Even seemingly small changes can set off long, protracted waves of grief that hit us again and again.Plus it is so often more hurt and loss, coming on top of the ones we are still coming to terms with.
Re your question, it seems to me that you must do the things that nourish yourself. There must be a boundary between who you are and who your husband is, so that you can make good decisions for yourself. Just as he needed to make the decision to sleep alone, you need to make the decision to go and dance.
I know it isn't that simple, and it is SO hard balancing conflicting needs, but you are important, and your wellbeing is important. Also, you will be a healthier, happier carer when you are meeting more of your needs.
I hope you can find a way to drum your feet to live music, and love it, even if your dear partner can't come and do it too.
Best wishes and all good things
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@Dot thank you so much for your words of wisdom. Love your description of letting go ... completely agree. It is more like snotty ugliness then the liberation of releasing a bird to be free. The grief you spoke about is so true. So many layers. It isn't like you are able to process, release and integrate one thing before another arises ... but suppose life isn't that neat and tidy in most situations. Can really feel what you are saying about self worth and the rejection. It is so real for warriors living with MECFS. Damien made a comment a few months ago. He was talking about how he had redefinied himself once again but he wasn't ven sure if he likes or enjoys the new hobbies or interests he had taken up ... he had just chosen them based on his level of ability. He really felt like he has lost all sense of his Self. Thank you for confirming the need to fill myself up. Damien also supports this 100%. As a carer there is still so much blockages around this, which at least gives me a focus for my next layer of self-growth work. Thank you so much for being such a solid foundation within this forum and for taking the time and energy to respond. Know what that means for you so my heart is deeply touched. Stay wonderful
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@Andie Thank you so much for your openness. Also thanks for explaining your low cognitve functioning at the moment. Your message read beautifully with very helpful wisdom in it. Completely agree about the mental health care plan. Have been on one for about two years now and the sessions with our psychologist are so valuable. He actually sees the whole three of us in the family which in our situation helps so much as it supports open communication channels between us all. On top of this also do carers coaching, carers peer support and have carer's counselling available when needed. Truthfully had to make an emergence counselling call a couple of Mondays ago as the pressure of parenting tipped me over. Mental health is so important to support when things are so intense. Balanced my own mental health for years with my yoga and mindfulness practicies but realised that in my situation having professionals there to support, guide and help me with accountability is so vital. Also really appreciate what you shared about how you just soldiered on for so long until life made you stop doing that due to situations worsening. That is exactly the same as us here and wonder how often this reflects the story of people managing MECFS and the people who help care for them. We are in the process of pyshco-education around MECFS for our little family as well as our extended family. To rewiring the thinking that just soldier on through it all... it is such a damaging mindset to have. Once again Andie thank you so much. Stay beautiful
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@Glimmer thank you for your response. You have just reminded me to look at the small achievements of each day with a sense of gratitude and even pride. As you said the main focus is often just getting through the day and that does need to be acknowledged. Getting through the day takes so much energy and persistance. So much more then people realise. So in this there needs to be an acceptance of the achievement of this. So thank you for that. Also as a carer when I take time to nourish myself that also needs to be acknowledged with gratitude. The fact that I made space on Sunday to made a short video of the flooding at the local dam (I live in Brisbane) is actually something to feel good about. It may not be a big thing in the scheme of things but when your days are focused on the necessity of daily living it is a big thing. Understand about the road trips now only being short appointments as well. As @Dot said, the art of letting go isn't as surreal and euphoric as yoga and meditation teachers make you LOL. Thanks Glimmer.
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@Vicki-Murtagh Hey Vicky, you've really nailed what its like. I particularly empathize with the constant letting go. I think we would deal with CFS so much better if it just stayed at one level that we could adjust our lives to and move on. It is a cruel torture in some ways. I didn't have much to add or say other than thanks for sharing your story.
