Category: M.E.

Danni

10 Years…

Danni, M.E., Physical Disability, Real Life

Since the last time I stood and walked (3 steps). Still no idea why on the 18th May 2014 I had no POTS symptoms, but I’m very grateful for the memory. I’ve been unable to do either since then.

Danni, a tall white person with light brown hair and glasses, standing with a zimmer frame in front of a bed. They are wearing a purple nightdress, purple pyjama bottoms and green heeled boots.
10 years ago, standing in my room. Please ignore the mess – we weren’t expecting to take photos that day!

Most of the time I don’t mind not being able to walk. I always found it painful, even from childhood, with low stamina. I was constantly rolling my ankles and once POTS started kicking in age 12 it became very much not fun, though I wouldn’t know that’s why it made me so dizzy and ill until late 2014. Being able to walk again would be useful and if I got the chance again I’d grab it (like I did 10 years ago) but it’s less important to me than mobility in general.

I do miss being able to sit upright though, or stand. Sitting would mean more time in my wheelchair, and being able to go out and do things. Sitting upright would mean I could fit in more places and potentially use a smaller, more portable wheelchair. Standing would make transfers much easier and mean I could reach stuff Izzy can’t (I’m quite a bit taller than her).

I got to the point of being able to sit up for a few minutes in 2022, but then I caught Covid and since then I’ve not managed more than a slight head raise without severe symptoms and payback. I’m working on it but it’s very slow progress. ME really sucks in that the more you push the worse you get. I’m hopeful that I’ll get there eventually 🙂

I am happy I’m able to get on my computer again, and blogging is helping reduce the number of nightmares I’m getting so that is positive. And things could be so much worse. I’m very lucky.

Danni

Not ME Awareness Day

Autism, Danni, Gaming, Goals, Important Stuff, M.E., Mental Health, Physical Disability, Real Life

I was planning to blog on Sunday, which was ME Awareness Day, but instead because I have ME I slept through it instead. To be honest I’m not entirely sure I would have said anyway – I’ve already said what it’s like to live with Severe ME, and that we need more physiological research. The recent NICE guidelines are a massive improvement over the old ones, but now we need doctors and hospitals to actually listen to them.

I guess I might as well do my update post instead 🙂

First thing: the charity which provides my adaptive controllers, SpecialEffect, was given a BAFTA Special Award. They thoroughly deserve it, having helped so many physically disabled people be able to access games, amongst other things. BAFTA asked the games journalist Laura Kate Dale to write an article about SpecialEffect and what they do, and alongside some amazingly awesome people I was quoted in it. Still can’t quite believe that happened 🙂

Below is mostly a rant, so feel free to skip it if you like. It’s mostly for my future reference. The Too Long; Didn’t Read version is that respite didn’t go well, lots of things happened, and though I’m struggling, I’m making progress on some of my goals.

Last post I mentioned I was going into respite, but didn’t know where. Eventually Izzy contacted Social Services and they found somewhere that would take me. The downside was it was 10 miles away. Izzy booked stretcher patient transport there, which apparently we could always do since I needed it? No-one told us that before. It meant I got there though, and it meant I wasn’t as ill as I could have been on arrival.

The stay in the care home did not go well, though there were a few good days when the right staff were on. The morning Izzy flew to America (I’m now allowed to say she went to the Game Developers’ Conference in San Francisco) she had to phone them at 5am to get them to help me, as I’d not seen anyone for 7 hours. They agreed to hourly checks, and even without them everyone on that floor is meant to be checked on at least every 2 hours, which didn’t happen many nights and some days. Multiple unnecessary bedding changes were needed during the stay, because I didn’t get pad changes when I needed them. And to top it off, I ended up with my first bed sore in nearly a decade, due to having a heavy plate on me I couldn’t move for several hours multiple times, and no alternating air mattress. And not giving me my prescribed painkillers when needed. I was running on adrenaline the entire time, and am still having nightmares about it.

The one big positive of the stay was it was near where Sammie lives, so I got to see her twice (would have been more if she’d not had a cold at the beginning and I was doing better). Those visits helped so much. Izzy also came between the two trips, both to try and improve my care (didn’t work) and to just spend time with me. I’ve got a photo of all three of us together which makes me happy every time I see it 🙂 I also heard the owls at night, which was pretty cool.

Coming home was interesting. Izzy forgot to book the stretcher transport until a few days before I was meant to go home (while she was still in Belgium), and by that point they couldn’t do it. Then she couldn’t get a wheelchair accessible taxi booked either. This meant the only option was public transport. The first 20 minutes or so in my wheelchair I was mostly fighting to remain conscious, but eventually adrenaline kicked in enough I was aware of things and made a request: to go on a train (Metro). This technically added 6 minutes to the journey and an extra change, but reduced how far Izzy had to push me (especially uphill) and meant I got to be on a train going over a bridge, and was able to look at other bridges! That part was worth it, even if I’ve still not recovered completely.

Since getting home it’s been mixed. I crashed, as expected. The home care agency put me on a doubles round without letting us know, and having two extra people in the flat was just too much for me. We also weren’t told who was coming, and they were arriving outside the times agreed with the agency (11am-12pm in the morning, 6pm-7pm in the evening – technically my calls are at half past but with 30 minutes leeway either side). It got to the point I was panicking just thinking about it, so Izzy agreed to cancel them for a week, and also told them when they came back to only have one care worker come in.

Then I had my B12 injection, and there were two nurses for that. And because Izzy was working I had to answer all their questions by myself. Necessary (it’s started to kick in now and I can actually be awake for a few hours a day, like now) but not great in a crash. I was due to get it while in the care home, and they said they’d sort it out, but obviously they didn’t.

Then the nurses insisted I needed my mattress replacing, which was true as a pipe was broken (though the foam below is also pressure relieving, so it wasn’t an emergency). They wanted to do it the same or next day as my injection, but since there was no way I was going to be well enough we managed to postpone it until the next week, which I’m very grateful for. It meant a night in the living room and being in there with Izzy while she worked for a day. Was lovely to spend time with her, but one of her work machines is way too loud for me to be in there while it’s on. I’m glad I have a working mattress again, but I wish there was a medium pressure setting as high is a bit too high, but low is a bit too low. It’s better than none though, and it does mean I’m sleeping a bit better.

Since then I’ve been mostly trying to recover from everything, and get used to the new care workers. Having only one in definitely helps, though I don’t trust them yet. I’ve been feeling really guilty because I know how lucky I am to be getting care at all, and I feel I should be coping better. Izzy tells me I’m a silly sausage. Most of the time I like being autistic, but I do wish I were more able to cope with change and anxiety. It’s exhausting.

Izzy’s trips both went well. She really enjoyed the work event, though failed to get me any peppermint Lifesavers (not helped by having a headache the one day she had free to explore). I helped by tracking her planes and telling her where she needed to go at each airport, especially for the really tight connections. Her cruise was apparently fantastic, and she met friends and went to the zoo and saw penguins, amongst other things. I unfortunately was too ill for a video call while she was at the zoo, but the photos and videos were great. She did a bit better on presents, getting me a soft toy penguin and stroopwaffels.

A gentoo penguin. It is in the water, with the top of its head visible above the waterline, and most of its body and wings below. It is looking directly at the camera. It has a black head with a white band around its eyes, and a beak that is mostly yellow with a black line on top. The body and upper wings are black, and the belly and under wings are white.
Gentoo Penguin in Rotterdam Zoo. Taken by Izzy Brennand

Apart from the first couple of weeks where I mostly slept, I’ve been well enough for some entertainment. I’m slowly getting back into watching my favourite Twitch streams, when the games are ones that I can deal with. I’m now up to 10 books read, so I should probably think about upping my goal there. I’ve completed three video games so far (A Little To The Left, Frog Detective: The Entire Mystery and Unpacking) so I’m really happy with that. I watched Mary Poppins Returns and Miss Peregrine’s Home for Peculiar Children while in the care home, so I’m doing well on that front too. I’ve also watched the first two episodes of Good Omens, though for some reason TV shows are still really difficult to follow. I’ll figure that out at some point, when my brain is doing better. I’m really happy I’ve been able to do as much as I have, especially since I’m still not able to move as much as I’d like.

I know I will get there eventually. I’m hoping my home care situation will improve (I’ve been offered the chance to move companies, which I’m unsure about right now but if things don’t improve with this one soon will take up). Being at home is much better than not. Izzy’s being incredibly supportive and understanding, and helping me when I’ve had nightmares, anxiety and panic attacks. I’m still able to do things and I’m even on my computer to write this, which is so much easier than on my tablet. It’ll be okay 🙂

Danni

Dysautonomia Sucks

Autism, Danni, M.E., Mental Health, Penguins!, Physical Disability, Rant, Real Life

A rant, then an update.

It’s becoming more obvious to me that dysautonomia (dysfunction of the autonomic nervous system) is causing the worst of my symptoms right now. Which is a problem, as that’s things like heart rate, blood pressure, breathing, digestion, urinating, and everything else the body does without thinking about them. POTS (postural orthostatic tachycardia syndrome) is one form of dysautonomia, but ME can cause others.

The main ones causing me bother are heart rate and blood pressure (making me super dizzy and unable to sit up, amongst other things) and digestion. The first I’m used to, as it’s one of the reasons I’ve been bedbound so long. The second one has recently got worse, and I’m not happy about it. I’m also having issues with breathlessness and bladder stuff, but they’re manageable.

So digestion. About a month ago my body decided that solid food was just gonna hang out in my stomach for more than a day. Which I know because sometimes it comes up and reminds me it’s not moved on to my intestines yet. I’ve had reflux and regurgitation issues as long as I can remember (one of my earliest memories is bringing up milk and apple while in nursery, so I was 3 or 4), so I’m used to it. I’m not used to bringing up identifiable bits of chicken 37 hours after eating it, or rice 26 hours after doing so. 10-12 hours is my normal since getting ME.

I’ve had it before, and previously I’d give my stomach a bit of a break by swapping to liquid foods for a few days, and that would be enough to sort it. It’s also previously only happened when my ME has been really bad, so I’d normally be struggling to chew as well so liquids helped there too. I figured I just didn’t have the energy to digest properly, and once I came out of that bad period it resolved itself.

This time, my ME isn’t actually that bad. Chewing isn’t difficult. I’m able to do basic self care tasks like wipe my face and help with things like changing my top. I can even use cutlery every few days. I have enough energy to watch films and read books. In those ways, I’m doing pretty good for me. But I can’t digest solid food properly.

I swapped to liquid and dissolvable foods, following what my dietician told me years ago when chewing was impossible, and it did help. I was only bringing them up for 12-14 hours after eating, which isn’t amazing but I’ll take it. I’ve also discovered the combination of soup and milkshake is not one I like, especially mixed with stomach acid, so I really need to leave at least 14 hours between them. Rusks go with both, and have the advantage of being solid enough to feel like I’ve eaten something, but pretty much liquid by the time I’m swallowing it. I’ve eaten a lot of rusks.

Every few days, I’d try a bit of rice or banana to see if it was getting better. And until last week, it wasn’t, so I went back to the liquid foods. Then I again tried rice, and I stopped bringing it up after about 12 hours. Since then I’ve had a few days where I’ve been okay with what I’ve eaten, and others where I’ve needed my antiemetic to keep it down and it’s still coming up the next day. I think it’s getting better but slower than I’d like, and I’m mostly only having one meal a day with snacks which isn’t ideal but better than nothing.

As for what’s wrong, we suspect I might have something like gastroparesis (partial paralysis of the stomach), which is not uncommon among those with my combination of stuff (especially hypermobility and dysautonomia). I’m too ill to get tested though, and it’s not yet serious enough to make us worried, as I am still able to eat, even if it’s not necessarily what I want. I’m sure it’ll resolve itself like it has done previously. My IBS continues to be a pain, but it’s my normal so that’s also reassuring.

I do want to know why I still get hungry while my stomach is full though. That one I can’t figure out. Good for making sure I still eat, bad for my nausea and reflux.

</end of rant>

Other than that, I’m mostly doing okay. I’ve already read 7 books, so I suspect I’ll be upping that goal soon. I’ve watched a couple of films, and have started raising the back of the bed in the hopes of getting back to sitting up, though I overdid it one day and got payback. I’ve also been doing some planning.

Izzy’s leaving the country this month. Twice. A few months ago she booked a cruise to northern Europe with some friends for her annual holiday/break from looking after me. That starts on the 30th March, so I was already updating my care home instruction book and sorting things out for that. Then last month she got asked to go to the USA for a work trip. This is a massive opportunity for her, so we said yes. This event starts on the 19th March.

We get 4 weeks of respite a year, though it turns out it’s not January to January like Izzy thought, but July to July, which meant we only had 15 days left. Social services have been very good and given us the extra we need as a one off, which we’re very grateful for. It’ll be the only time I go this year, so that’s fine.

Izzy will be home the week between the two trips, but I’m not going to be well enough to travel twice in such a short space of time so I’ll just stay at the care home until she’s home from the cruise. Which one? We don’t know yet.

All the ones with nursing care I’ve previously stayed in near here, and the others within easy travel distance, can’t take me. Mostly because they have no room or aren’t doing respite right now, one because they think they can’t meet my needs which is better to know beforehand but frustrating. Izzy’s now trying ones that are further away and we’re accepting I’m going to be more ill. I’m meant to be going in on Friday so there’s really not much time (Izzy has been trying to sort this out for the last couple of weeks, so it’s not her fault).

Am I well enough to travel? Nope. We know ways to mitigate the worst symptoms, and luckily unlike when I go to hospital I don’t need to be able to communicate clearly at the other end (we do warn them) so I can mostly shut off and just try and recover. Going into respite last year it took about 3 months to recover once I got home, but hopefully because my ME symptoms aren’t quite as bad (even if my dysautonomia is worse) it won’t take that long this time. Care homes are not a good place for me but Izzy being unable to continue looking after me would be worse. The extra week and a bit for the work trip won’t make that much of a difference.

Izzy has requested I don’t say exactly what her work trip is, but there’s no way we’d have been able to afford it. Luckily we’re not paying 😛 To help, her boss has agreed that as me going into respite is essential for Izzy to go, the day I go in counts as a work day. If she’d not been going on the work trip, I’d have gone in on a day she’s already requested off as holiday before her cruise, so this is cool and fair. Hopefully she gets a lot out of the work trip, and that more people will know about Arcade Paradise VR (the reason she’s going). I’ve demanded she brings home some peppermint Lifesavers, since I remember really liking them as a kid but they’re too expensive to buy here. I also want pictures of San Francisco and planes.

The cruise is going to be fun. Same friends and cruise ship as she went on last year, but another friend in the same group has been convinced to go. Last time it was to the Norwegian Fjords, this time is northern Europe (Germany, the Netherlands, Belgium). I’ve been involved in the planning, have been promised lots of photos, and a trip to the zoo to see penguins (and meet another online friend who lives nearby) has been organised. I’m mostly hoping I’m well enough to video call while they’re at the zoo so I can see the penguins, but if not Izzy is going to film them for me. I’ve also told her to try a fresh stroopwaffel.

To add to my anxiety over not knowing what care home I’m going to stay in, my home care is all messed up right now. Previously I had a stable team of 3 amazing care workers, but two of them have left in the last month, and the third only does Tuesdays (and has taken this week off). I have been asking who is meant to be doing my calls, but it’s been changing on the day and we’re not getting told this. They’ve also been changing the times of the calls without letting us know, so I keep panicking. I’m hoping it’ll be more stable when I come home again, but we’ll see.

The combination of everything means I’ve been struggling to sleep until I basically crash. I’m also both drinking and weeing more (caused by adrenaline), meaning Izzy’s being woken up more often to deal with that. Once I know what’s going on it’ll be fine, I just need to get through this period. Being Autistic is mostly great when things are going well, but I really struggle with uncertainty and change, which is what’s currently happening.

It has been fun planning for Izzy’s trips though. When I couldn’t sleep one night she gave me the job of finding her a new suitcase as she gets one checked bag for the work trip and her current one is noisy and awkward to pull. I gave her multiple options and she decided to go for the biggest that met the size requirements, not realising it’s huge. It’s purple and lightweight though, so will be good. Just need to figure out where we’ll be storing it when she gets home again. We also found out American Airlines and Alaska Airlines allow huge cubes that would be easy to transport a human in, if it weren’t for the 27 kg weight limit.

What I do in the care home depends on how well I am. I’m hoping I have decent enough wifi or 4G so I can watch stuff, and I’m taking my Steam Deck and adapted controllers so I can play games if I’m up to it. Over the next couple of days I’m choosing clothes and downloading games and stuff to watch in case the connection isn’t great. I’ve already updated my care plan/instruction book (there’s only one extra section to clarify something). If there’s a TV I’ll take my Chromecast, if there isn’t I might take one depending on how difficult it is. There’s also F1 to watch if I get a good enough signal to stream it.

If I’m not well enough for any of that, Reddit exists for when I’m conscious, and adrenaline has a massive effect. I’ll also take my galaxy projector to watch if I can’t brain at all. Worst case scenario is I sleep and rest a lot, and I can do that in any bed if I’m in a room by myself, which I will be. I doubt I’ll be well enough for visitors but I’ll let local people know if I happen to be.

How much I’ll be able to talk to Izzy (probably via WhatsApp) we’re unsure about right now. Definitely not while flying, maybe not while working or partying (apparently that’s also work?) in the US, but probably at the airports, in the hotel, and when just being a tourist. When she’s in the UK it’ll be similar to our normal when I can’t speak, and when she’s on the cruise we can talk when she’s in port, but only on sea days if she buys WiFi which we’ll try to avoid (she caved last time).

It is very weird to not talk to her at all for a day. Since we got married that’s happened twice – once when she was in hospital without her phone, and the first sea day on her cruise last year. If my sleep is all over the place it might be asynchronous, but that’s one of the benefits of using a messaging app.

Penguins are still good though. Floof (the baby little blue fairy penguin I saw hatch on a New Zealand webcam stream) grew up and left the nest, so I’m now watching another young penguin go through a molt in the same colony. I’ve also been watching the burrow cam of some Australian fairy penguins, where there’s two chicks going through their first molt. I love that I can watch them from bed on the other side of the world.

If I’m awake this (Tuesday) evening I’m planning to watch the Barbie film with Izzy. Hopefully I’ll also have more of a clue with what’s going on by then too. Until then I’ll keep distracting myself with penguins and looking up all the things Izzy will be too busy to do in San Francisco next week.

Danni

Happy New Year!

Danni, M.E., Physical Disability, Real Life

It’s 2024. My new penguin calendar says so. My tablet says so. Izzy says so. It does not feel like 2024, but the evidence shows that it is the case. I hope you all have a wonderful year, in whatever form that takes.

I had a good Christmas overall. I was well enough for Christmas dinner, including my birthday roast potatoes (I asked for them as a birthday present and was willing to wait 6 months for them). They are the best roast potatoes in the world. The lamb was good too 😛

I was also thoroughly spoilt with cards and presents. A huge Piplup (penguin Pokémon) Squishmallow, penguin chocolates, penguin Lego, a hat, Icecue (another penguin Pokémon) pin badge, magic snake puzzle/stim toys, the penguin calendar, and I’m sure I’m missing some. The messages in the cards made me feel so loved and connected. I am a very lucky penguin.

I saw Sammie just before Christmas, to give her both her Christmas and birthday presents. Somehow she’s now 20?! And studying for a degree?! She eventually wants to become a video game developer like Izzy. She’s at the point where when she’s asking for academic help I can’t give her it, but luckily Izzy can. I’m really proud of the woman she’s become. Seeing her was well worth the payback.

Also just before Christmas we got a video doorbell, as the doorbell we had for our back door had died and that’s the side most deliveries and people go to. I was concerned about it as it’s a small block of flats, but Izzy told me one of the other flats has one and I discovered we could turn the motion detection off, which both makes the battery last longer and means I’m not accidentally spying on the others in the block. I can watch it live though, which is great for feeling less confined. It also means if I hear the doorbell going, I can easily check whether it’s a hallucination or not without disturbing Izzy.

Otherwise it’s been quiet. Still not well enough to watch much, though I popped into a couple of Twitch streams over the holidays. The last couple of days have been a bit better for that, so I’m watching a little blue fairy penguin nest live stream on YouTube. Yesterday I got to see a chick hatch from its egg! There’s a sibling that’s still yet to hatch which should happen in the next day or two. The chick is still in its scrunkly stage, where it looks more like an alien than a bird. It’s adorable.

I’m due a B12 injection (turns out I’m deficient and it might be partially responsible for some of the neurological issues I’ve got going on, and some of the fatigue) and I’m hoping that once it kicks in I’ll be able to do more. I don’t like them (needle phobia), they hurt, and they make my mouth taste weird, but they do help me be less foggy and make it easier to stay awake. I also don’t want to make any neurological damage worse, which is what would happen if I didn’t get it. At some point I need to talk to my GP about a few other niggly things, but it’s not urgent.

I have some goals for the year, but I’m going to put them in a separate post so they’re easier to find when it comes to reviewing them. I’d also forgotten how much I’d missed blogging. Writing that last post helped way more than I expected, and I discovered people still read these. Thank you so much 💜

Danni

I’m Still Alive!

Danni, M.E., Mental Health, Physical Disability, Rant, Real Life

Warning: Grumpiness Ahead

Long time no blog. Short version is I got Covid June 2022, and though the vaccines kept me out of hospital (just – breathing with O2 levels of 88% was not fun) it caused a relapse I’m still going through. I have a draft of a proper update blog post as lots of things have happened, but brain fog is preventing me from completing it.

I’ve gone from mostly bedbound to completely so. Since getting Covid I’ve gone out for hospital appointments and to go into respite, but that’s it. I miss being outside, even just to go on the ramp. Being too ill for visitors sucks. I make an exception for Sammie because the payback is worth it, but it’s months between her visits.

I was mostly coping okay with this, then at the beginning of November this year having a wash then my flu and Covid vaccines too close together has brought more deterioration. I feel guilty for struggling to deal with it. I’ve been much worse than this before, which isn’t helping the guilt as I feel I should be able to manage better.

I think it’s partially that once I’d recovered from the actual Covid infection, I still had things I could do that I now can’t, as the long term effects from that were more POTS and movement based rather than sensory. So I could watch YouTube, TV shows and Twitch streams. I could play video games using an adapted controller. I could manage going on my computer for a few hours a month. I even became a moderator for a couple of Twitch/Discord communities that have helped keep me going during the pandemic, which meant I felt like I was able to give back to them. Now I’m nearly always too ill, and it hurts.

I think Twitter imploding also hasn’t helped. When it shut down API access to third party apps, it stopped being the easiest place for me to keep up with people. Then lots of my friends left (for good reason), and they’re all spread out over different platforms. I do have a Mastodon and Bluesky account, but I’m struggling to use them even though I want to. Facebook is also overwhelming. Discord isn’t quite the same, being closer to chat rooms than a place to find friends updates and stuff, and there’s so many servers it’s impossible to keep up. I mostly stick to the two I moderate, with a couple more slow paced ones I look at when I’m able to.

I feel guilty because I know how lucky I am. Izzy is amazing, and I’m so lucky to have her. She still works full time from home, and yet tells me it’s okay to wake her up at night when I need things. Her job means our income is stable, and though we’re still on a low enough income to qualify for Universal Credit, it’s enough that we don’t need to worry too much about things despite the increased cost of living.

My main three care workers from the new agency I started with last year are excellent, and due to their stubbornness around wanting to keep to the same clients, most of the time I only have those three each week at set times, and it’s the same one for both daily calls. It makes a massive change from around 10-15 with the previous agency, and has reduced how ill receiving care makes me. I don’t even need a weekly rota (though I do have it in the calendar because keeping track of days is hard, and it’s a fortnightly rotation).

So many people with Severe ME are doing so much worse than me. Even I’m not even close to where I was at my worst. Most of the time I can speak, eat solid food with my fingers, roll over, and cope with a certain amount of light and noise. I have people who love me and believe in me. I feel guilty I can’t communicate with most of them.

To make it clear, I don’t think I’m depressed. I had depression for 12 years, so I know what that’s like. I don’t feel emotionless or very down. I’m mostly frustrated.

Before getting Covid I’d been improving, to the point where I could sit up for 2 minutes without vomiting or fainting for the first time in years. I had been planning to attempt a non-hoisted transfer on my 36th birthday. I can’t remember most of June or July of 2022, and based on what I can remember I’m glad of it.

Even after that, I adapted to my new normal. I figured out what I could and couldn’t do. I felt lucky that I’d stayed out of hospital, and that I could still do the things I enjoyed that helped me cope.

I think that now I can’t do those things (at least not without really bad payback) it’s why I’m struggling. Izzy’s doing her best to help but I can only tolerate her in my room for short periods and she has other things she needs to do. I think it being such small things that have made it this way hasn’t helped. Losing abilities because of something big (like Covid) is easier to deal with.

There’s one Twitch stream a week that really helps my mental health, so I’m prioritising that right now. There’s a segment called Little Victories, where everyone who wants to can share something they’re happy about from the previous week, no matter how small. Even before this relapse being there helped, but now it’s the main thing I’m looking forward to, and it’s worth the payback.

I’m also praying. Not always in words. I’m hoping with time I’ll get better, even if only a little bit. I know I’ll be okay, but also that it’s okay to be frustrated and upset right now. Not sure how to deal with the guilt, but I can work on that when I’m able. I’ve gotten through a lot worse.

I’m not expecting anyone to have read this, but if you have, I hope you’re doing as well as possible. There’s a lot of good in the world, and I hope one day I’ll be part of that.