Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 2, 2017.
[This is a sympathetic article. It is just three pages long. Unfortunately it is not open access]
Despite quite a lot of the abstract talking about gender, it is not discussed that much in the full text.
Unfortunately, if social workers have been "infected" by CBT/GET ME/CFS model, they likely would not be that open to some of the suggestions.
It's certainly a stark contrast to the behaviour of the social worker involved in the Sophia Mizra case.
I would like to hope that things have moved on since then but I wouldn't bet on it.
I try to do everything possible for my daughter to make her life easier. I never thought that might make things harder for her.
Full access here:
Edit: I very much doubt that you are. Asking yourself that question is a pretty good indicator that you're doing so so many of the right things. But if you do want suggestions, these were my thoughts from my own experience.
Is it possible to help her do something for you? I know that making other people happy helps me.
Doesn't have to be big. Anything she can do to make you smile would be favourite.
[My husband helps me make his favourite dinner. Or sits me near the kitchen and gets me to read the instructions for his favourite cookies that he puts together. ... or keeps my tiny spade sharp, collects me gravel, and lets me dig a useful path, one square at a time over months.
(Edit: my elderly father moved in with us so I could look after him. Ironic now. But I still bake him his daily bread in stages over 48hrs and tend to cuts and bruises, which helps him and makes me feel useful. He used to see something I had stopped doing and finish it but, if I were just doing it in stages, that made me feel, just a bit, useless. Or he'd help out in the garden and make different choices from my plan. Too much brain fog to tell him that too. Now he asks if I'd like him to light the fire now or if he can carry the buckets of mulch along the path so I can finish putting it where I want it etc, and he waits a day before finishing off the laundry or the dishes so, if I'm doing it to feel useful, I can finish it in my own time - I usually do.)
It all depends on what's doable. Stroking your forehead at the end of a long day?]
Being able to do the tiniest thing to help is good. Its one of the reasons I advocate.
However the very severe end of the spectrum cannot engage like this. They need even more support from those around them, but in a very subtle way as they cannot handle too much stimulus. Its very hard to do I imagine.
Thanks for the link, @CFS_for_19_years
Its a very compassionate and thoughtful piece. These were interesting observations:
As often, I'm uncomfortable with the way these sorts of pieces focus so heavily on avoiding the disaster that is suicide, when really, the bigger problem is that life for many severely ill people is hard to endure.
The bits of the paper you quote is about the social worker educating the family. In my experience its the family who need to educate social workers who have very little understanding of what it means to live with chronic illness.
I don't know how old you daughter is but I'm sure your love & support are much appreciated.
It's been a long time since I was a kid but I imagine that the feeling of being a burden & all that entails might be stronger as one reaches adulthood. A younger child or teen might experience resentment at a loss of independence & needing help more & this might at times be experienced or expressed as a resentment against the carer.
The only way to know for sure is to talk to your daughter & allow her to discuss how she feels about being ill (I daresay you do that anyway).
Maybe, in return, you could let her know a little of how you feel - being very careful. Just so she can ask you & discuss it with you. Then rather than thinking the worst she can talk to you.
Of course all this depends on how severely she's affected.
Well or ill, I'm sure she knows you love her very much & would move mountains for her. That's the most important thing of all.
To put it another way, it is the difference between living and merely existing (as in just hanging on at the margin).
That is not a sustainable state, even for the most resilient.
Thank you @Woolie, @Invisible Woman, @alex3619 and @Sean. That's much more what I wish to say.
@Sad Dad i jumped in with whatever I could think of because I didn't want to leave you alone with that thought. You are very evidently doing so much to help her, you are here. I wish that is what I said.
One thing you are also doing for her, which is essential, is recognising what she is going through, that it is a real condition, that she is doing the best she can, that everything about this thing is hard. And you are there for her. So many don't. Don't worry about making it worse, she needs that rest. the fact that you read this article and asked yourself that question, assures me you're doing a great job.
Thanks for the link, @@CFS_for_19_years. It reminded me that CFS sufferers experience a wide variety of interpersonal and professional relationships, and it's impossible to make predictions about where they will get the most support.
I hope everyone has been able to find someone they can candidly talk with about what they are going through, and everyone should at least try to have those conversations with the people they are close to.
For what it's worth, I assure you that the people who love you feel your pain. I know from experience what it's like to wake up in the morning wondering if last night was her last night.
Sad Dad is an ambiguous moniker. I'm really just sad for my daughter and what she's going through and that I can't do more for her. That being said, I appreciate everyone's support.
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