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Desperate to Help But Cannot

Messages
22
Ive been on here before about my daughter, I have to type this for my daughter, She has had chronic fatigue syndrome for 10 years now, the last three bedbound.

Things have deteriorated a lot,

Just the last year she has become light sensitive and noise sensitive and sits with dark glasses on all day and headphones,

She no longer listens to podcasts or music, cant watch tv, cant bear sound of washing machine or hoover, We have to stay very quiet,

Her legs and arms have now packed in, she cant stand more than a few seconds, Cant dress herself or feed herself, Has to lie down, cant sit in a wheelchair as bending knees hurts,

She lost her voice eight months ago and is permanently sore all over,

We are now looking at how on earth to feed her, as she cant hold a lightweight cup or tumbler and cant even suck from a straw,

Doctors, health professionals, psychiatrist think its all in her mind and we arent getting any help.

She is on loads of medications but nothing seems to help

Regular meltdowns, usually self harming in front of us and begging us to kill her,
She sees her body as an alien thing that she wants to destroy.

She says the real her is long gone, dead, and she hates this body.

It is very ,very upsetting, Myself and my husband arent coping too well , She needs round the clock care, We are both not that well ourselves and our mental health is starting to suffer with the strain
 

Jyoti

Senior Member
Messages
3,365
Oh @helenrowena, I am so so sorry to hear this. You and your husband must be both heartbroken and at the very end of your tethers. I can only imagine what you are going through. And the strength to keep on has to be coming from somewhere beyond will and your human selves.

I am sure there are some other parents/caregivers here who have experienced what you are now and have been for a decade; I hope you can connect with them and at least feel a little less isolated.

And no matter what and how much and how urgently your daughter needs, you and your husband also need to take care of yourselves and each other as best you can. Otherwise, there will be no one left to do what is needed. It is the ultimate in dilemmas--whose needs first?-- when all are profound.

I am thinking of you all and sending my very best wishes, hopes for your enduring love and strength.
 
Messages
22
Thank you , she keeps changing her mind, one minute she is asking us to help her hang her and the next day thats all forgotten .

Today now she is asking about getting a private doctor since our GPs dont have any knowledge.

She points to an alphabet chart to communicate, Its very very sad, . I sometimes wonder if this stems from her unhappy childhood, she was an intensive care baby with heart issues, then throughout school and college found it hard to make friends, boyfriends have let her down too, She is now 31 and wants to just end it all, but if we could find a doctor who could offer some hope , its worth a try,
 
Messages
89
@helenrowena I’m so, so sorry to hear what your family has been going through. I’m not a parent so I can’t begin to understand what it’s like watching your child suffer and not be able to help. But I can imagine it must be soul destroying.

The fact that you have been looking after your daughter for so long, and coming here to look for help, shows me that you are amazing parents and your daughter is very much loved and cared for. So please just take a moment to know how much respect and compassion everyone here has for you.

If there is any way in which I can help, please let me know, even if it’s just someone to talk to on the phone who is going through the same thing (from the patient point of view). I genuinely mean that, sometimes just having someone to talk to and swap ideas with can really help! Please just send me a private message on here if you’d like someone to talk to xx

I’ve had a few breakthroughs with my health in the last year after experimenting/trying some new things, so happy to share, but know that every case is unique and so not everything will work for everyone.

Ive battled depression anxiety my whole life, so know that beast well too and may be able to offer some help xxx

I’m going to send some info over to you just in case any of it helps/you want to look into any area further xx
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Are you in the UK @helenrowena ?
The ME Association have some helpful pages on their website. They also have a Helpline, but I am unsure of the type of help offered by their volunteers. However, you are bound to talk to someone who understands. A number of the volunteers have ME/CFS themselves. It may be rather like a "Samaritans" type of call, or they may be able to suggest helpful resources. I don't know, as I have not personally interacted with them.

My heart goes out to you all. I hope you can find some help. I send you my kindest thoughts and wishes. A virtual gentle "hug" for your daughter.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
The 25% ME web site is for people with severe ME and their carers. They have a resource page for carers, fact sheets, and other resources.

This overview document (PDF) is intended to help a carer or other people around the patient to understand many of the physical and cognitive difficulties faced by a person with ME/CFS, along with some of the causes of those problems.

Regular meltdowns, usually self harming in front of us and begging us to kill her,
she keeps changing her mind, one minute she is asking us to help her hang her and the next day thats all forgotten .

Some of that behavior might be influenced by low blood sugar and/or nutrient deficiencies. Both can change a person's behavior dramatically.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Some of that behavior might be influenced by low blood sugar and/or nutrient deficiencies. Both can change a person's behavior dramatically.
That is so true. Even simple low blood sugar can have some dramatic effects both physically and mentally. I once thought for sure I was definitely dying when I had severely low blood glucose levels.

Serotonin and dopamine levels being out of balance can also cause quite awful emotional states, as well as many physical effects.
 

xebex

Senior Member
Messages
840
Even if it was "all in her head", it doesn't mean the doctors should allow her to starve to death because she can't (or in their minds refuses to) eat. If she is asking for a feeding tube for instance how is that refusal to eat? Is it possible to kind of play into their rhetoric a bit? You don't need to admit something that isn't true but you can just say, well if you believe it's all in her head you still have a duty to stop her starving to death, even if it was all in her head its not going to fix itself over night and she still needs help.

I hate the UK health system.

If you can't get a feeding tube is it possible to research into and buy smoothie like pre-made pouches that she can drink from a bit like the baby food pouches?

As for the suicidal ideation I am moderately ill and i get suicidal when in a crash, then two days later i am mentally fine again. I do believe my neurotransmitters take a dive and cause massive change in mood. Something to look into for this could be the supplements theanine and possibly NAC. Theanine helps ease anxiety and could help with those feelings, it doesn't mean its all in her head what it means is that her entire system is out of whack and that messes with how the brain processes things. NAC for me has been very helpful in reducing the toxic feeling i get which contributes to my rage and irritability. Sorry I can't be of more help.
 

Jyoti

Senior Member
Messages
3,365
I have no idea if there is a practical way of contacting this doctor, getting her support, etc. for finding a way to feed your daughter. It may be a red herring, and sometimes when we ask for help we get a lot that doesn't really..... I don't mean to add to a pile of suggestions with something unhelpful, so please, @helenrowena , just move on if this doesn't sound worth the trouble.

However, reading @xebex post above made me remember Laura Pace's presentation at the recent Dysautonomia International conference. She is a gastroenterologist and a PASSIONATE advocate for her patients, most of whom are women and many of whom have been summarily dismissed by their previous GI specialists.

She told a story of a young woman whose family contacted her because their daughter had lost vast amounts of weight. The gastroenterologist she saw did a gastric emptying study that found her transit was normal to fast. With a few other minor tests which were normal, they decided that she was anorexic, refusing to eat, and needed a psych hospitalization and a feeding tube.

The parents believed their daughter had a physical problem, so contacted Dr. Pace. She agreed it was likely there was something else going on and did more extensive testing and found that her transit time from eating food to eliminating waste was in the realm of a week, if I remember correctly. She was able to identify profound intestinal failure, which was responsible for this young woman's inability to eat, and she was then removed from the psych hospital and got the medical care she needed.

Laura Pace was furious that this had happened to this patient and blamed her fellow MDs for not attending to women in general particularly with GI complaints, not believing them and thus not really helping or healing them. Again--it might be a bridge too far, but if you want to find her, here is what I know:
Laura Pace, MD, PhD
Neurogastroenterologist & Genetics Fellow
University of Utah
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
I'm so sorry to hear about your incredibly difficult situation @helenrowena .

You must feel overwhelmed right now, but remember that you have to take care of yourself first. You're no help to anyone if you end up incapable of being supportive.

At the risk of overwhelming you, I'll share some websites in case you want to read more:
https://25megroup.org/me/living-with-severe-me
https://25megroup.org/download/1848/?v=1849
http://me-foreningen.dk/wp-content/...urst-Severely-affected-i-Nursing-Standard.pdf

I sometimes wonder if this stems from her unhappy childhood, she was an intensive care baby with heart issues, then throughout school and college found it hard to make friends, boyfriends have let her down too,

I don't think childhood experiences would have anything to do with it. When doctors don't have a clue, they sometimes try to blame it on psychiatric problems and then try to link it to childhood issues. But I've never heard of any strong relationship between severe ME and any childhood experiences.
 
Messages
22
Hope y’all are a bit better today. I’m having grouble with my folks, and i know we can be difficult and we appreciate you.
I recently read about another girl called Merryn Crofts. I googled her and her story is just like my daughter's. Sadly Merryn died . The story haunts me as I feel that we are on the same path
 

splusholia

Senior Member
Messages
239
I was like this. It was terrifying, and I’m not surprised she wants to die. All I can say is what helped me: liquid nutrients (thiamine, b12, folate... all b vitamins really important). Liquid trace minerals and vitamin d. Omega 3 liquid. Bimuno prebiotic in a drink. Is she on anything that reduces choline? My muscle strength increased a bit with choline. Antidepressants can reduce it. Medications to help mood to make it bearable.
 

bensmith

Senior Member
Messages
1,547
I am very sorry to hear that, its not easy for either party i know. I have read her story, and am fearful of that myself.

i wish i could thank you in person for helping her. It really is a blessing that youaccept her condition and try and help ber, im sorry its so hard and that we dont have better answers. For you, and for your daughter.

i also want to say my mom feels the same way to me. She is very frustrated.
 
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