Deterioration? Scared

[Emmarose47]

Hi all feeling some fear right now my condition has deteriorated further.
I've had a pattern for long time where I flare and then takes about 6 /7wks to reach stability. This time I moved end Jan had usual flare pattern then went out on mobility scooter 1dt time in long time and flared.. 4 wks later felt good and forgot about the 7 wk thing and as I'm in a smaller living environment thought I was OK and did short walk, stretching, chat with neighbours and workman came to measure up. That was 2 mths ago. I've been pacing well (I think) not socialisng (a trigger for me). I've also realised I'm mentally doing too much and am looking at what to scale down. I'm not in full flare but I sort of on off type thing. Last wk I had a day of feeling worst I've felt in so v long then next day pretty good. Is there hope for me to get to that stable place again? What are your experiences? Anyone had it where they declined out of usual pattern but then over time resumed?
I'm scared..

 

[elliem]

I’m so sorry you’re going through this. It’s so scary, not knowing whether you will stabilise or improve, not knowing how low you can go.

I’ve been sick 20 years and had lots of different baselines. I’ve had crashes for a few months and managed to recover to my long term functionality. I’ve had a very bad year and lost a lot of functionality, markers of my life, and my independence, but I might improve again. I tell myself that things can change. But my goodness the uncertainty is scary.

Sending you a hug.

 

[Emmarose47]

Hi @elliem thanks for your reply..
Yep it's scarey. Today I'm entertaining the idea of getting more home help with food prep that will help.
It's good to read your thinking on things can improve..

 

[Wishful]

My ME has ups and downs. Scary new symptoms pop up suddenly, maybe last for a few months or years, then disappear. I developed an intolerance of dietary fibre metabolites this year, which is very annoying, but I'm not freaking out about it because I expect it will go away eventually.

Since you are in a new environment, there may be new factors you are exposed to. Maybe there's an airborne chemical, or a noise in the night that disrupts your sleep.

 

[Emmarose47]

Thanks wishful good to hear your experiences.. yep there certainly is something in the environment it's called 'a highly toxic full time alcoholic who makes so much noise all day sometimes she disturbs the whole community.

But aside I socialised too much when moved here.. Maybe my body just needs time...

I've made changes and making some more what more can we do..

Appreciate peoe to keep sharing because it helps me feel not so alone

 

[Blue Jay]

It's the uncertainty all the time isn't it @Emmarose47? We all have it and you're right, it does help to share.

If you've got a noisy neighbour that definitely won't help. My son was living in a very nice flat but some of the neighbours were difficult to be around for various reasons.

He has moved back with me where the neighbours are all really nice people and it's very quiet. We have had our problems (my husband died less than a year ago) but my son is now able to get a decent night's sleep which helps a great deal. We both have ME, by the way.

Do give yourself time, rest more and let your body adjust.

Sending you a gentle hug and wishing you well.

 

[hapl808]

Yeah, sadly I can't socialize at all. It took me a long time to fully realize that, as the crash usually starts two full days afterward. Worse, even mental exertion does it. So if I try to edit a video, the next day is fine, then I'll often have maybe 2-10 days crash. But it's not predictable, and depends heavily on how hard I concentrated, whether the socializing was 'fun' like someone visiting for 30 mins, versus less 'fun' like low energy chatting on the phone.

To me, that's the worst thing about all this. Basically the more enjoyable anything is in my life, the more horrific the crash.

As for permanent declines, I have so many at this point. The only thing that often seems to tie them together is trying to push through crashes over and over. I think when I was able to stop and actually rest, I would recover to my (not so great) baseline. When I couldn't rest and tried to push on through (because of circumstances, partners, or just stubbornness), that often led to permanent loss of function for me.

 

[Apollonia]

Hi all feeling some fear right now my condition has deteriorated further.
I've had a pattern for long time where I flare and then takes about 6 /7wks to reach stability. This time I moved end Jan had usual flare pattern then went out on mobility scooter 1dt time in long time and flared.. 4 wks later felt good and forgot about the 7 wk thing and as I'm in a smaller living environment thought I was OK and did short walk, stretching, chat with neighbours and workman came to measure up. That was 2 mths ago. I've been pacing well (I think) not socialisng (a trigger for me). I've also realised I'm mentally doing too much and am looking at what to scale down. I'm not in full flare but I sort of on off type thing. Last wk I had a day of feeling worst I've felt in so v long then next day pretty good. Is there hope for me to get to that stable place again? What are your experiences? Anyone had it where they declined out of usual pattern but then over time resumed?
I'm scared..

I am so sorry to hear this. I've had ME since 1989 and I have been up and down more often than a... oops, scrub that, if I put in the comparison I was thinking of I'd get censored... I've been bedbound and working full-time and everything in between. Only you can find your just-right point, but one thing I would say: it's so easy to blame yourself for forgetting your pacing (i.e. living like a normal human being for once) and this can only make things worse. It's also easy to forget the times when you did find a balance—your successful times. Both of these—blaming yourself and seeing only the bad times—are sources of stress that you don't need right now. It's easy to say, I know, but you can help yourself more by focussing on finding whatever will calm your mind, as that will aid improvement of your physical health too. Very best of luck and we will all be thinking of you.

 

[Emmarose47]

@Blue Jay thank u for your kindness and understanding..
Yes the uncertainty..
I'm sad to hear of your loss 🙏

 

[Slushiefan]

Here here - I am truly and totally exhausted of the ups and downs of this condition.

That said, do keep your hopes up. There are breakthroughs all over the last few months regarding many systemic illnesses and their root causes including ALS, Multiple Sclerosis, and Long Covid. The research and activity in systemic diseases has never previously been successful at finding ANY root causes until now, and now there is more than enough data (and even some successful resolutions under lab conditions in mouse models) to clearly indicate that each of these do have determinable and treatable causes.

I don't have exact solutions to improve things for your particular situation, but I recently added Methylene Blue to my treatment, with good results taking me back a few years in my progression. It's another band-aid. Carry enough band-aids forward and maybe, together, we can hold out until a real treatment is found.

Please hang in there, for all of us!

Praying for you.

-Ken

 

[Rufous McKinney]

I've also realised I'm mentally doing too much and am looking at what to scale down. I'm not in full flare but I sort of on off type thing. Last wk I had a day of feeling worst I've felt in so v long then next day pretty good.

I've been in a very similar state.

Today my daughter announces well, since I managed to actually nap yesterday. lets go OUT.

oh, man. No, its I need many many more DAYS of absolute nothing to pull out of this ditch.

 

[Rufous McKinney]

Is there hope for me to get to that stable place again? What are your experiences?

I had to seriously chat with my GUT.

I experience some fear, also. It's hard to explain to anyone, how AWFUL we can feel, and I find varies tremendously

from one moment to the next. It's a E-ticket ride on the roller coaster. I"d prefer a little calm canoe ride instead.

Collapsing on the bed, I'm writhing around and then I can just taste this place where PEACE resides. I managed to get there for about twenty minutes yesterday.

Gotta hang in there. Gotta just keep at this RESTING up. somehow.

 

[elliem]

Yep it's scarey. Today I'm entertaining the idea of getting more home help with food prep that will help.

I think that’s a really good idea. A small step that’s actionable - getting someone to help with food prep. It’s hard when you have an intractable problem like your difficult neighbour that makes your illness so much worse. We spend lots of time trying to fix or find workarounds for that big problem. But we can get stuck when we can’t find any solutions to it. Sometimes the first best solution is to deal with a smaller problem that you can control, like the food prep. Your big problem is still there, but you’ve made something else a bit easier.

Thank you to everyone who has shared in this thread. I know your messages were for Emmarose, but I just want to say that they have helped me too and for that I am grateful.

 

[Emmarose47]

@Slushiefan thank you for your reply and knowledge base I have heard of some developments but with some of the conditions you mentioned although I don't know what has been found..

Good to hear you have found something that is giving u a bit more..

Yep I think of all of us most days all over the world sooo many of us and we do another day together

 

[Emmarose47]

Someone (restorative doctor) taught me muscle testing yesturday I'd call it intuitive truth..
So I stood up and she prompted me to put one hand on my crown chakra and ask 'is my name Emma' then to wait for the bodily response swaying forward or backward, I went backward.
She asked who is your favorite actor and I said. She asked is your name Robin Williams I swayed forward. She did a couple of other ones to determine which was was my yes and which my no
Then I held a piece of fruit and asked 'is eating this for my highest good' I got a yes..
Another one 'has my health permanently deteriorated' I got no. Also she asked something around another issue.

So basically I figure it's the bodies intelligence giving us guidance.
She said if I couldnt stand there are other ways to do it and I could you tube search.

I tested it out on some other things later...

Wacky or not today

So today I feel more hopeful..

Thanks everyone so far for. Replying I feel and appreciate u all

 

[Mary]

@Emmarose47 - glad to hear you're feeling more hopeful today! Also glad to hear about the muscle testing - I first had it done almost 30 years ago, and now would feel lost without it. I strongly urge anyone who's going to try it to first have it done by a competent experienced practitioner instead of just watching a youtube video. The. testing can be affected by one's state of mind and other things - e.g., it's important to keep a neutral frame of mind while doing it. Anyways, there are some subtleties involved which can affect the results.

Also, some persons who are trained in this can find out a lot more than what you can get from the swaying procedure. Anyways, I strongly believe I would be in rather worse shape if I'd never had access to MT. e.g., I used to detox a LOT, at least every week I was reacting to something (e.g., apple cider vinegar, cayenne, anything with "cleansing" properties) and thanks to muscle testing I was able to sort this out in an unexpected way. That's just one thing it's helped me with.

 

[Rufous McKinney]

getting someone to help with food prep

Much of my energy utilization is food prep related. Mental energy goes into How will I obtain edible food?

Physical energy is consumed digesting the food and I'm literally exhausted in the morning.

When I"m run down or in PEM, insulin resistance worsens for me. And if I sleep less and I am awake more, I consume more energy being awake, and I feel like I am starving.

sort of an odd vicious cycle, it seems.

 

[Rufous McKinney]

Both of these—blaming yourself and seeing only the bad times—are sources of stress that you don't need right now. It's easy to say, I know, but you can help yourself more by focussing on finding whatever will calm your mind, as that will aid improvement of your physical health too.

the "beating ourselves up part"...totally does not help.

I don't feel like Queen for the Day, instead its I am the great disappointment.

I feel like a lousy wife, and lousy Gramma, and plus I feel totally lousy (ok thats sort of a triple home run)

Yesterday, I predicted improvement for today.

But I feel more run down, and decided I need to ground myself today.

 

[hapl808]

I don't feel like Queen for the Day, instead its I am the great disappointment.

I feel like a lousy wife, and lousy Gramma, and plus I feel totally lousy (ok thats sort of a triple home run)

Yep. I tried one last time with a partner where I thought I might be able to start a family as she seemed okay with my various health problems. She became more and more frustrated and actually created more problems for me that caused my permanent decline. In retrospect, I realize I mistook her tolerance as support; I mistook her disbelief of my health problems as acceptance. A huge mistake, but one I doubt I will be able to remedy in this lifetime.

 

[Rufous McKinney]

I realize I mistook her tolerance as support; I mistook her disbelief of my health problems as acceptance.

I'm sorry, thats so hard.

I spend considerable amounts of time alone. I have very little desire to be around anybody else.

This must be a temporary state, not a permanent deterioration. Yes, thats it. it's ALL temporary. That's guaranteed.