Navigating CFS/ME when you have Dissocative Identity Disorder

[cfs-me-with-did]

This is a side blog for us to talk about managing life with ME/CFS while also having Dissociative Identity Disorder.

Our main blog is @thehyperspacesystem which tends to focus more on life with DID and coping with trauma symptoms.

Twilight (🌃) is the main poster on this blog. Occasionally other alters will write here.

We were diagnosed with ME/CFS at the age of 19 and are now 41, so we have had it a long time

We are a cane user and an ambulatory wheelchair user, depending on ability levels in a given situation on a given day.

We have recently gotten covid for a 3rd time, which has made us much more severely disabled

Our ME/CFS is on the more severe end and apart from meal prep, eating, toilet, getting water, making coffee and doctor's appointments, we are in bed. We use a PC that is mounted so that we can use it lying flat on our back. We now have some ability to be up and about for a short peroid of time before needing to rest again.

We have difficulties with vision and use tools such as screen magnification software and screen readers sometimes and we will also talk about that here.

We are interested in alternative input devices, as we often cannot use a keyboard or mouse and cannot use touch screens for more than a few minutes. Our primary interface to control the computer is a wireless trackball. We have recovered the ability to type with a normal keyboard with the pain meds we are on now, but still need to use a trackball instead of a mouse.

This blog uses the queue, we post into the queue and one post per day is put up from the queue Twilight does not actually write enough posts for the queue to actually be useful.

[cfs-me-with-did]

🍌here. I decided to wanted to change my clothes because I smelled terrible. I gave myself a sponge bath and then struggled to dress myself. I am just too physically weak to do things like put bras on and I was getting increasingly angry and frustrated.

The bras I wear zip up at the front, but I have insufficient hand strength to do up the zip while it's on me. I eventually figured out that I could zip it up before putting it on and akwardly hold the top so the zip didn't come undone.

I then had to change my shirt to a different one because the one I had chosen the first time gave me pretty extreme gender dysphoria. It used to be that getting dressed was like playing dress up on a doll. But this time it felt like me.

by the time I got myself sorted out I was ready to collapse from physical exhaustion.

[cfs-me-with-did]

i have gotten awful shoulder and back pain from manual wheelchair use. I also frequently find that my arms suddenly lose strength and i can't push myself so i have to text my parent/carer to push me back to my bed.

there are a few holdout alters that continue trying to walk with a cane and hurting us. As far as i can access they are slowly learning in a primative "it hurts if i do x" way not to try to do things we can't physically do any more.

we need to work harder at avoiding trauma triggers because the emotions of flashbacks are exertion that we can't afford. After flashbacks or intrusive memories or anything like that we generally sleep 16 - 18 hours.

There are things i could do to help rein in the chaos of DID making our crashes worse, but i don't have the energy to do them.

[cfs-me-with-did]

I (🍌) have had to resort to this as it has come to my attention that some alters are trying to walk with a cane and causing major crashes.

DID amnesia, source attachment and diffcuilties with communication don't go away just because the body is disabled.

I have also observed that each alter has to accept the body's disability individually. We are a polyfragmented system, there is a very large number of alters and the system is not fully known to me.

This makes dealing with a physical disability especially challenging.

[cfs-me-with-did]

I tried this smartphone while lying on your side that everyone raves about, but for this body it is not comfortable. If i lie on my side, the arm on the side facing up hurts.

the most comfortable way for me to use modern devices is to rest the bottom edge of a tablet on my stomach lying on my back so i don't have to support it's weight and tap with two thumbs.

[cfs-me-with-did]

I ended up crashing from moving the computer. It did wayyy too much. I've been asleep nearly all day.

[cfs-me-with-did]

I am now using a tablet as my primary device on an over bed table.

It's on a stand and I have a keyboard and trackball connected via bluetooth.

This is much better for using in bed as I can easily pack things away and push the over bed table aside when I need to go to sleep, rather than having a hulking desktop computer on it making it too heavy to easily move.

The PC is now running as a Virtual Machine server. I have a windows VM with the GPU passed through and I connect to that using parsec, so i can play games and have them streamed to the tablet using parsec. You can pair a controller with bluetooth and it will be picked up by the game.

I also have a Linux VM for doing programming stuff when I have the energy for that.

Hopefully this set up works out, as while having the computer right there was keeping me sane for a while, it's started to negatively affect my sleep.

[cfs-me-with-did]

So the other alters kind of suck at pacing, but someone at least had a nap. It almost makes up for the standing up for too long this morning which has caused pain all day.

I'm midly excited about the power chair that meets our needs better so it will be less nessecary to force body to stand even though she can't really do that. We are also getting a new fridge that is narrower, so it won't block access to the kitchen... meaning once I get the power chair, I will be able to access the bathroom and the kitchen and my bed all without standing up. the power chair will also give me access to things like the local library and make trips to the medical center a lot easier.

[cfs-me-with-did]

Due to circumstances I don't want to discuss publically, I may be able to get a power wheelchair.

The ability to stand and walk is better than it was, but it is still limited to several minutes at best. I certainly couldn't go anywhere out of the house without a wheelchair. I am currently using a cheap manual wheelchair that doesn't meet my needs. I researched my options and the Pride Mobility Carbon Fibre Power Wheelchair seems like my best option. It is available in new zealand and can be put into a car or taxi without the use of a specalized lift, which is a requirement for me as there are no transport services with specalized lifts out here (I live in a remote area). It can also support my weight, as I am on the heavier side and some power chairs have a maximum user weight that is too low to support me.

[cfs-me-with-did]

We have a new bed computer setup, my parent/carrer assembled a new, larger over bed table for me and I now have my computer set up on that. As we are well enough now to engage in a larger selection of hobbies, I set up my midi controller so that I can practise playing and perhaps compose some music.

I tried to attach another picture of what it looks like from in bed, but tumblr keeps saying "oops it looks like there was an error trying to upload that image", I tried twice. I don't think it is actually an upload failure, it likely tripped their automated filters for some reason - I wish tubmlr would just straight up admit it when they are engaging in censorship instead of pretending it's a technical failure.

[cfs-me-with-did]

Multiple alters have noted in the bullet journal that there is now ability to stand up and walk for a useful amount of time. I have tried it and found that i can now navigate my room without the wheelchair and move short distances. We will gradually try walking a little bit more to test it, we might be recovering a little bit! I suppose the sensible thing to do would be to try it a little bit and then wait 2-3 days to see if it makes us crash.

[cfs-me-with-did]

We did too much and now we have PEM and can't walk. I was having a really good time being able to be up and about, but I should have only done a little bit.

[cfs-me-with-did]

Multiple alters have noted in the bullet journal that there is now ability to stand up and walk for a useful amount of time. I have tried it and found that i can now navigate my room without the wheelchair and move short distances. We will gradually try walking a little bit more to test it, we might be recovering a little bit! I suppose the sensible thing to do would be to try it a little bit and then wait 2-3 days to see if it makes us crash.

[cfs-me-with-did]

People that use eyemasks to rest, do you ever see things with the eyemask on? The pacing app i have on my watch said "1 - Caution" so i put my eye mask and noise cancelling headphones on and laid down to try and rest to prevent further crashes. I saw like forest that morphed and shifted it was ok at first, but then it morphed to an underground scene and then morphed again to some kind of torture chamber / hellscape which would make a really fucking cool video game level, but was horribly distrubing trying to get to sleep or rest. I had no control over the images, trying to imagine a pleasant scene had no effect.

I have experienced this before when i've been really really tired and needed sleep, but the eye mask and noise cancelling headphones made it a LOT worse, it seemed like i was actually *in* that terrible place. I have had to sit up in bed with the lights on to calm myself after what I saw. I'll make myself a nice cup of tea to drink. I probably just really need sleep, but ironically this makes it much harder to sleep.

[fibro-memes]

[cfs-me-with-did]

My doctor prescribes helpful prescription medications and allows me to access disability benefits. That's it. Everything else is down to me and the other alters. We need to manage our illnesses with fairly high amnesia. There is an extensive system of notes: medications taken are written in a bullet journal as are symptoms. We are considering whether to get one of our alters who knows programming to build a database system to record medications taken, symptoms, activity information for pacing, etc for chronic illness management, but this would cost a LOT of spoons to build.

We occasionally have issues where alters do not take needed medications because they don't remember that it hasn't already been taken or something like that and then end up in severe pain.

Some alters also don't recognize symptoms that show we need to rest due to body dissoication, making crashes worse - although with our improving internal communication it is often possible to yell at them from the background.

[cfs-me-with-did]

I am suffering the expected crash. My arms and hands hurt. I can't really propel my wheelchair, so i am stuck in bed. It hurts to type. One of our linux-knowledgeable alters set up an onscreen keyboard so i can type with the trackball.

My parent/carer who also has ME is not doing much better as she accompanied me to the doctor.

I am hoping that my pain medication works soon.

[cfs-me-with-did]

I have returned from my expedition to the medical center. I did better on my 2nd outing in a wheelchair on account of it not being raining. If it is raining, your wheels will spin and you will need someone to help you. Yes I know there are special tires and other things you can get to help in wet weather, but who can afford that?    I managed to get up the ramp at the medical center by myself and I felt like I had climbed a mountain – in that triumph kind of way, although I was somewhat fatigued by the time I reached the top.    The doctor completed my forms for disability benefits and wrote my prescriptions without any difficulty. Everything seemed to go quite well.    I will have to mostly sleep for a couple of days to recover from the exertion though.  It’s now waiting game to see if the disability benefits people accept my medical.

[cfs-me-with-did]

I hope I am not breaking any boundaries by posting on another alters' blog, but shower chairs are the most wonderful invention ever! I worked out a method by which I can shower that works well and I have documented it for the other parts of me to use.