Trying Again. What First? D-Ribose? BCAA's?

[Squeezy]

@Trish and @Invisible Woman

I'm totally gone, but had to say YES! To what you both wrote.

 

[Squeezy]

A huge part, the BIGGEST part of my problem with coping with ME is that I simply cannot pace.

Even though my children are now 19 and 15, so the physical demands of childcare have disappeared, and the elder one is living in another country, they need enormous amounts of emotional support and practical advice.

So much talking and listening! I know I am blessed to have children, even more so, children who talk to me and seek my opinion... But dear lord, its exhausting. One in person, with rock music, attitude, GCSE's to be herded through, while making unrealistic demands of me daily.

The other with tearful phone calls and masive guilt trips - last night I was on the phone for an hour calming her down from a panic attack. This is a frequent occurence.

I WISH I had a healthy, competent spouse who could attend to our beloved children while I REST and PACE - but how do I pace when my children's emotional needs far outstrip my energy limit?

Both have therapists. But they only have 1 emotionally stable parent.

Oh, I'm supporting the emotionally unstable parent too. And keeping watch over our finances, bills, etc

PACING? Even as I lie here in bed, physically exhausted, I can't take my mental finger off the pluse, because I have 3 people leaning hard on me.

So YES! I'm looking for things that might help me function. Unless I'm utterly crippled with migraine pain, I can't fail them when they need me.

I'm very happy for those of you that CAN rest and PACE without your family and home disintegrating. I can't.

I'd like MY THREAD to PLEASE go back to discussing what people might have possibly, anecdotally, found useful.

 

[Squeezy]

Thank you @Invisible Woman for making me aware that NAC is counter-indicated for low thyroid That's one off the list, one less to research.

And thank you for all your thoughtful comments and questions. I'll PM you when I gather my wayward brain cells

 

[Trish]

I'd like MY THREAD to PLEASE go back to discussing what people might have possibly, anecdotally, found useful.

I hear your frustration and distress, @Squeezy, but people are free to post on threads anything within the rules that is related, however tangentially, to the subject of the thread. It's fine to remind readers of the thread subject as you've done in your post.

I'm so sorry you are finding pacing impossible because of all the emotional demands on you. I have some fellow feeling here, having been a single parent with ME through my children's adolescence.

I think it is often not well enough recognised that any activity, whether it is physical things like walking, social things like conversation, or dealing with difficult emotional situations, all drains our energy and depletes us in a way that is nothing like what healthy people experience. All those things can set off PEM and if we are stuck in a situation where we cannot escape family responsibilities it is impossible to pace.

I don't have a solution. Just wanted to sympathise.

Whether there are any nutritional, herbal or medicinal treatments that will help in this situation, I have no idea. I never found any. And our individual particular diet, physiology etc mean that what may be helpful for one person may be no help to another. Perhaps the best starting point is something you have yourself found helpful in the past.

Finding ways to relax and have times to myself helped a bit, and making sure what I did in those times was as physically and mentally relaxing and undemanding as possible helped too. For me it was often reading light escapist fiction, but each of us finds our own escapes. Trying get enough sleep is of course another important one - that I've never cracked, though I found letting go and stopping worrying that my sleep was erratic helped.

And reminding myself that things like GCSE's don't go on for ever. My son needed quite a lot of 'homework supervision' in his GCSE year. That improved greatly once he moved on to A levels, partly because I decided it was time for him to learn to sink or swim for himself, and partly because he was doing subjects he liked.

 

[Invisible Woman]

So YES! I'm looking for things that might help me function. Unless I'm utterly crippled with migraine pain, I can't fail them when they need me.

I don't know the details of your migraines @Squeezy. In my own case, even after the migraine is over the effects still linger for a day or so. I will feel drained, washed out. That was true even before ME struck. According to the neurologist I saw, that was fairly typical.

Basically, whatever else is going on, don't stop doing whatever it is you do to minimize migraines.

No idea how to assist with the offspring. Sorry.

I find there is a catch 22 in these situations. Do you try something that might help, but also risks making life even more difficult if it makes you worse? Or do you wait 'till you're in a better place to try something new, but you don't want to risk ruining a good patch?

Just remember nothing is curative.

 

[Squeezy]

I think it is often not well enough recognised that any activity, whether it is physical things like walking, social things like conversation, or dealing with difficult emotional situations, all drains our energy and depletes us in a way that is nothing like what healthy people experience. All those things can set off PEM and if we are stuck in a situation where we cannot escape family responsibilities it is impossible to pace.

I don't have a solution. Just wanted to sympathise.

Thank you so much for your empathy, Trish. It means so much. I've just had to promise my daughter that I'll fly out to go with her to a psychiatrist appointment. I just don't know where I'll get the energy. Surely an adrenalin rush! Lets pray for one! I'm usually blessed with one, when it's critical... I WILL go.

I've not found anything useful in the past, except adrenalin! And sugar And a nice cuppa tea. Honestly, that's the most comforting, emotionally restorative thing, ever!

So British!

Oh the homework! Mine is dyslexic, and has ADHD too, so that makes it even more fun He's agreed about prioritising Maths and English, and he seems to like his other subjects, which is half the battle. The other half is sitting down!

Getting out, on my best weeks, with the dog, is terrific. He knows all my secrets. Best listener. 10 minutes of peace. But trapped in the house, with Depressed, Anxious husband, 24/7 is horrendous. Hopefully recent interviews will turn up a job soon.

I just don't get time alone! I kicked him out to walk the dog - no, nicely! - and this 10 minutes so far is such a huge relief.

Probably, him working, instead of moping around me, will be more useful to my rest and recovery from PEM than anything else. Even if I do have to make my own cups of tea.

 

[Squeezy]

Oh yes, @Invisible Woman the Migraine Hangover Horrible. A day or two of feeling green, exhausted, delicate stomach, a pale shadow. It's a thing.

I'm definitely doing my migraine avoidance stuff. Daily prevention pills, 500g magnesium etc. I feel they're as under control as they can be. Given they're triggered by over-stimulation, ie anything but sleep!

I find there is a catch 22 in these situations. Do you try something that might help, but also risks making life even more difficult if it makes you worse? Or do you wait 'till you're in a better place to try something new, but you don't want to risk ruining a good patch?

Ah yes. I'd try something with possible side effects when feeling a bit rotten. Like now. I'd definitely notice an improvement! And I'm willing to take a risk. Nothing ventured... But if I was good-for-me, no way! If I can get out with the dog for 10 minutes, I'm not risking it! That's happiness, and not to be messed with

Yes, nothing is a cure, but shortening time spent in bed in a dark room, in addition to migraine time, would be terrific.

 

[Daisybell]

Fingers crossed for your husband’s possible job opportunities. I’m sure that will help you.
You’ve all had major change, so perhaps it just need more time for the dust to settle? Here’s hoping...