Trying to cope with Chronic Fatigue and DID together

I am trying to work out how to reduce the extreme fatigue the body seems to experience which every so often leads to a complete crash.

I'm trying to prevent that next crash as the last time it seemed to result in a stroke and given the current state of affairs with our countries medical system..it wouldn't be a good outcome! ..(and we don't have the finances to 'go private').

So we're kind of stuck in our situation but trying to make the best of things.

The things really holding us back are

* others fronting who are 'stuck in the past'
* a select few constantly wanting 'time out' to do what they want and leaving the body so exhausted that I can't fulfil my duty as host.

It's not my place to say they can't come out ..although our Gatekeeper has put a temporary stop on it to give the body some recovery time so we don't get so sick that we require emergency treatment this winter which we may not be able to get 'in time' (7-12 hour wait on average for an ambulance to even get to your door in our local area when I last checked..then god only knows how many more hours/days in the back of an ambulance or hospital corridor! ) I think we were told we needed to get to the hospital and started clot dissolving treatment WITHIN THE HOUR for it to work and prevent a major stroke the last time.

so it is quite an urgent and essential thing that the body is not once again pushed to that point through sheer exhaustion.

I can't find much on DID and Chronic Fatigue/ME together.....google tends to bring up either stuff specifically on just DID or ME/CFS depending on how I word the question.

So I thought I'd ask on here ....how can we manage the system more energy-efficiently so we can regain enough strength and energy to actually have a life? ..My hope would be to get it to go 'into remission' by spring..summer at the latest..so we can at least have 'a good summer' with trips out for all of us to look forwards to!


Jay

Our CF is due to our brain constantly compensating our ADHD + our hypersensitivity to sound + a burn-out three years ago.

One thing that worked for us was to make everyone aware of signs of exhaustion, and to stop trying to live our life like we were younger. Working onto lowering the dissociative barriers helped a lot too. The more co-con we are, the less the other alters feel left out and/or feel the need to have time for themselves to come out.

After the burn-out, CF became way worse, and we will probably never be able to function like we were before. For us, the raw truth is : we don't have enough energy to let everyone do things they want. We only have one body, one amount of energy, it's not what is used to be, we have to be cautious and prioritize. It's sad and frustrating, but we had to accept it, grieve our old way to function, and find new ones.

We had time when I had to say "I'm sorry but no, you can't come out and do this now, the body can't handle it. I will do my best to try and find you some time later, but right now, it's not possible. We need to go to bed, and try to get some sleep."

It's hard, it means breaking a lot of promises, but the rest of the system have to understand you can't always predict accurately what will exhaust your body. You can only do your best ; and the body's health and safety comes before everything else.

I totally get it's not simple at all... Even without dissociation, it is a frustrating thing. Just because I worked this weekend, I slept almost all day yesterday, had a +13h night last night, wake up at 11am with a headache, and will probably crash around 3pm to sleep until 7-8pm, then go back to bed at 9pm. I don't even know if I will be able to go to the sculpture class tomorrow.
CF is hell. You have all my support through that!

Thankyou @Dwelt.

Currently all our energy goes on our dog first as he is another living soul completely dependant on us. We get his walk done first then at the very least he's had an hours walk and run about on the fields and put his food down sometimes we manage breakfast for us too other times we have to go straight to lie down.

We try and be up again by lunch time for another 2-3 hours to play with him let him out for a wee, quick game of ball in the garden, train or if we have something like laundry to do we try and break it down by sorting what needs to go in the night before, putting machine on before we head out and its finished by the time his walk is over.

We rarely get enough extra energy to clean and sort so the house is a tip. By 3pm we need to go lie down again for a hour or so and try and get up by 6pm to give him some more games/activity before he goes to bed. ... we keep this up about 4 days then by Friday the others are wanting to have the weekend for gaming and stuff or any really bad stormy days where dog walk won't be possible cos it gives them all available energy for a day for gaming..even when there' other stuff that needs sorting!

We try not to be strict and when there has been enough energy to go around they sort it out amongst themselves whose coming out to watch what or play whatever and what time etc.. the rule is the dogs needs comes first (we don't have kids or partner so don't have to worry about too thankfully) ..so as long as he's had his exercise, food and is happy to go lie down again (he's over 10 now) they can do what they want with the rest of the time.

We often don't bother getting showered/dressed properly just keep a fleece and jog pants by bed to throw on over PJ's then have boots left on (mobility) scooter footplate to just stick our feet in (+ whatever coat etc is needed)..just so we can just come back in, strip off and go back to bed for a bit if needed. His food is prepared the night before where possible so just needs putting down...sometimes we only eat once a day in middle of day and try and shower and wash hair at least twice a week.

it's just about manageable but only because its winter and gets dark earlier and we have no social demands because of covid situation and our dog is classed as elderly now himself (in dog years) and also gets a bit of arthritis is the damp cold weather. ..we'd never manage his needs if he was still young with him being what most people would consider 'a large active (working) breed' (we didn't have ME when we got him or for most of his life).

I'm aware some of the brain fog/fatigue issues could be coming from menopause but we can't go on HRT (for medical reasons) so there's some hope some of it may eventually ease off as we get further through that process but for we seem to be spreading ourselves rather thin and need a way to get through this difficult bit .

it seems to be considered 'bad' of an host to NOT let other alters come out when they want and for as long as they want from what we've read. I'm really trying not be a 'bad host' but can't find any information on systems who also have stuff like ME, strokes and stuff to deal with on top of the DID and how they manage things like daily energy levels?

Would 'voluntary dormancy' be considered 'bad' if we asked them to choose who maybe willing to go 'temporarily dormant' for a short time so all available energy goes to the physical processes of the body in the hope we can achieve a longer remission for at least spring/summer? ..then we have like 6 months of better weather for everyone to enjoy and longer daylight hours may also help with energy levels?


Jay

We have a lot of CF here too. Right now it's worse because we're hitting a huge amount of adjusting to the current reality and having a large amount of depression. Dealing with the trauma probably doesn't help.

Sometimes just switching seems to drain energy and make it hard to function.

I hadn't really thought about it in terms of the autism, but that would actually make sense. Learning positive stims has helped that a little.

I don't have anything to add other than just to be supportive and share.

Vi

ViTheta wrote:We have a lot of CF here too. Right now it's worse because we're hitting a huge amount of adjusting to the current reality and having a large amount of depression. Dealing with the trauma probably doesn't help.

Sometimes just switching seems to drain energy and make it hard to function.

I hadn't really thought about it in terms of the autism, but that would actually make sense. Learning positive stims has helped that a little.

I don't have anything to add other than just to be supportive and share.

Vi

Thanks Vi (@ViTheta) we appreciate the support! ..We seem to have been doing fine before Peri then a stroke hit. Wondering if we actually had covid last Jan when we thought we just had a cold/flu and ear infection as both the Tinnitus and Fatigue levels seem to increase after and stay at quite high levels since. ..I guess dealing with everything from the perspective of being autistic would have also made things feel even more overwhelming/exhausting.

I know Kit has been out front a lot over the last year trying to work on physio so we're not left dependant on carers forever for which we're extremely grateful, especially given the current state of social care! ..we can at least get ourselves to the bathroom when needed and get our dog out (even if its in our PJ's under a jogsuit! ) and feed ourselves!..so we don't qualify for free community care help due to this anyway.

Jay

COVID is definitely a possibility too. We are still struggling with the after effects of it and we had it in September.

Vi

TheTriForce wrote:it seems to be considered 'bad' of an host to NOT let other alters come out when they want and for as long as they want from what we've read. I'm really trying not be a 'bad host' but can't find any information on systems who also have stuff like ME, strokes and stuff to deal with on top of the DID and how they manage things like daily energy levels?

It is bad when the host says "no" just for their convenience, because they want to be in control all the time, they don't want to share, they are uncomfortable with their system, because they want to do their own stuff only, etc.

This is not the case here : you say "no" to protect the body. You can reassure the rest of your system you aren't saying "no" to be mean or selfish, but to make sure the body has enough rest. It's like taking care of your dog : if everyone in the system insist on playing with the dog without letting him rest first, that's not good at all for his health.

Letting the others come out shouldn't be detrimental to your body's and life's needs. For example, some people with DID have to say "no" to Littles being out around bedtime or meals, to be sure the medication are taken properly. Some have to say "no" to certain alters when around their (outisde) children or at work, to make sure everything is done correctly. Note that the "no" isn't forever : they can gradually say "yes" when the others make progress and are more able to manage the body and life's needs.

Each system will have their own rules about that, but a system needs to negotiate a structure around being out. Letting everyone comes out as they please might sound great, but it's a temporary solution. At some point, if there is no structure and compromise, it will mess with your body and your ability to function.

TheTriForce wrote:Would 'voluntary dormancy' be considered 'bad' if we asked them to choose who maybe willing to go 'temporarily dormant' for a short time so all available energy goes to the physical processes of the body in the hope we can achieve a longer remission for at least spring/summer? ..then we have like 6 months of better weather for everyone to enjoy and longer daylight hours may also help with energy levels?

Jay

If you think it might work, and if it is done 100% voluntarily, then why not? But be sure to explain to the ones who volunteer that it may not work totally as expected or wished. Some might have high expectations about the energy level you will gain.

Dwelt wrote:One thing that worked for us was to make everyone aware of signs of exhaustion, and to stop trying to live our life like we were younger.

Yeah maybe we should type out a list of signs they are pushing the body too far when out. We are all much younger than the body, even the older ones are still a good 20 or more years younger than the bodies age. Some of us do age slide to closer match the bodies age especially where 'outside people' are present but some are stuck at a specific age for emotional reasons.

Dwelt wrote: Working onto lowering the dissociative barriers helped a lot too. The more co-con we are, the less the other alters feel left out and/or feel the need to have time for themselves to come out.

Can you give an example of what you mean by 'lowering the dissociative barriers'?

Some of us work well blended or co-con, but some won't voluntarily stay in that mode other than for a short specific task or medical emergency.

Dwelt wrote: Be sure to explain to the ones who volunteer that it may not work totally as expected or wished. Some might have high expectations about the energy level you will gain.

Thank you for your suggestions, we will have to discuss this with everyone and see how they feel. Obviously we wouldn't expect the 'littles' to stay dormant, though they may have stay inside with their caretakers and maybe not come to the front as often to play (certainly not as often as they have been doing), or maybe not allow full switches for a while, but stay in background quietly and we'll watch their favourite show or something when resting.

Jay

UPDATE

All the other human hosts have agreed to go into stasis and not attempt to switch out with me. SG is acting as gatekeeper to make sure they don't. Juno is blended with me up front to help as she carries a lot of experience and her own source of energy (as a 'walk-in spirit') so her and SG (who hosts her so she is effectively sharing her energy to 'power SG' too) are not taking any energy from the physical body.

so I have not been quite so exhausted these last few days and had a nice relaxing weekend and also got to see sibling for a while. I'm not going to follow Kit's more intensive exercise regime so I can see how much extra energy that leaves me with and just focus on trying to get little jobs around the house done.

I do think some of the issue is that some alters are trying to function like the body was still in its 20's or get it back to that level of fitness - at least pre-Maddie's (early 30's) initial neurological issues.
Unfortunately the reality is that the body is in it 50's and has quite a few physical issues that mean that's just not going to be possible!

Last night we watched a TV Program about 'How to live to 100' - not that we're particularly aiming for that age! ... but thought it might show what kind/level of exercise they were managing. Apart from a few exceptionally fit 80-90 yrs old in the US Blue Zones doing impressive weight lifting (where they had daily access to gym's specifically for them)...most were doing what would be considered 'more sedentary' - just walking or gentle stretching but the point was they kept moving, stayed mentally active and did everything themselves most were vegetarian or vegan (some had fish once or twice a week) but no or very little processed foods and had 'simple lives'. There's a part 2 next week so we'll watch that too.

Anyway we'll try this more 'gentle approach' for a couple of weeks and see if it gives us more available energy overall.

Jay

Good luck with that!

Going at it gently is a smart way to do it IMO. Never cross the limit of your abilities but just gently approach them without crossing, until they slowly start to move and be wider.

A bit like when you go for complex trauma therapy: you go at it gently and slowly to avoid going past the breaking point.