OfToday's appointment with neurophysio ending up being two for the price of one. Had both a neurophysio and a occupational therapist come to see me. I was anxious before and a bit during but it went well.
Was mostly an assessment session, so lots of questions which really tired me out.
Didn't get any treatment for muscle spasms /stiffness yet but neurophysio is going to come back on their own sometime in next few weeks and they had a few potential ideas (have to wait for office to ring with appointment joy...)
Got a few small goals to work on routine wise to start with.
Overall it's positive but was very exhausting and a little slower than part of me hoped. Still slow is more sustainable I suppose.
That does sound overwhelming, but sending all the good vibes that it will be helpful for you. Assessments are a lot, especially with being multiple humans. Do you know when they will be following up to schedule?
How have you been doing since? Did you get some time to rest and decompress?
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
No idea when I will be contacted about scheduling. Which does not help with anxiety. I wish I had asked in appointment about putting something in the diary there and then, physio wasn't really clear on time frame for appointment either just that she would see me on her own next time.
Wednesday night after appointment was a bad pain night despite napping post appointment and trying to rest. And I had a seizure in early hours of yesterday morning. But most of yesterday was ok, had a slow day on the sofa, but was good and did some meditation and that helped. Slowly decompressing. Off to go for a drive to the seaside now, partner is driving me so I can have a change of scenery (we live about half an hour from the coast)
Tried starting to wake up earlier at a consistent time, so far have consistently tried to wake up for alarm at 10:30am and not managed to wake until 12/12:30pm. But that's better than 2pm or 40m where it sometimes ends up after a bad night.
EDIT: Sorry the below was possible more appropriate in an RV thread than here. It is also potentially triggering to anyone with medical phobia or bad memories associated with medical stuff. I have left post but put in a trigger box just in case.
Constructively I probably wanted some help with grounding from bad memories and with how to cope with anniversaries of traumatic experiences. So if anyone had any advice on that subject it would be much appreciated
Doing better today managed to get calm last night partly by watching some camping /survival videos plus cuddling my cuddly animals and holding my partner's hand.
The following content has been hidden - Reason : possible trigger hospital memories
Today is 2 years since I was admitted to hospital with my asthma during lockdown 3 and developed FND while inpatient. I wasn't really thinking about it but today I was out at seaside and I think I saw the female GP who sent me to be admitted who left the practice before I saw her again. (didn't say hello wasn't sure what the etiquette was.and what if I was wrong and she left because she was ill so might not want to be reminded of that time either).
It brought intrusive memories of that day, and struggling to breathe and being scared about Covid and a few days later my first dissociative seizure (not that anyone new that's what it was at first) and all the tests the CT scans and MRIs.
That first seizure felt like I was trapped and they were trying to get me to srespond and I could hear them, feel them but I couldn't do anything. It was so scary and felt chaotic (pretty sure it was organised chaos) they were running around, stabbing me with IVs, rubbing my sternum to try and get a pain response, and even put defibrillator pads on my chest at one point. I was screaming inside saying I can hear you I can feel that please stop but I was powerless. And I don't blame them when and asthmatic goes unresponsive for an unknown reason there has to be the organised chaos of trying to help them.
But I am there in the panic and fear and absolutely helplessness and right now I can't seem to leave. It's not a full on flashback because I can see the outside world. But I can feel that time and I am struggling with it
Last edited by long road : 04-02-2023 at 08:59 PM.
Reason: Hiding potentially triggering post from me in bad place
Wanted to share a more positive update: I am doing well with my new routine so far. 3 for 3 the last three days on waking up before 11 am and getting outside before noon and the two days previous I was awake by noon. Which I am feeling quite proud of myself as this is a lot better than I did at maintaining a routine before. Think I have a bit more capacity to try this time though.
At same time trying to remember that if I do have a bad day where I don't hit my goals that it's ok, and that it doesn't detract from my progress / performance so far. Need to remind myself now as I have a tendency to be very hard on myself and I want to keep making progress where I can and I am aware with chronic illness progress isn't always linear there are good days and bad days but even with bad days there can still be an underlying trend of improvement.
Want to try to avoid getting trapped in all or nothing thinking when the inevitable bad day does occur. As often one bad day leaves me feeling like good days are impossible. I am keeping a diary of wake times and when I go outside, so I have evidence I can fight the negative thoughts with. And writing about it here to try and remind me as I come here when I struggle.
Anyone got any advice on balancing being proud / positive with realism so you don't crash if things don't keep going well? But at the same time still enjoying the positives. Everything in my life feels like a delicat balancing act these days.
Well done re the routine! This is all stuff we struggle with a lot too and with being able to do routines and things consistently. What we try to remember is that doing things when you are able to DOES add up and will start to feel easier over time. It's not about creating huge streaks, but about building larger patterns and routines in on the days and times you are able.
Our coach human also has us write things out and track things. So we can remember that we DID do things and then also track what gets in the way. So when we don't do things we can start to notice patterns. We've gotten a lot better about going, oh we didn't do the routine on these days but that's because we had xyz thing occur yea that makes sense, those are hard days. We try to go with some days will just be bad days and it is what it is, but sometimes there are patterns that pop up that we CAN actually work on dealing with too.
It's really hard to let go of perfectionism in stuff like this. We read something a while ago that talked about consistency over streaks. So for example 25 out of 30 days of doing something is actually fantastic! But if you look at it as well I got 13 days in and then missed a day it's all gone now then you'd never have gotten to the 25 days total. (These are example numbers but if I need to delete or reword please tell me)
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
The tracking what gets in the way to help oneself be compassionate when things go wrong sounds a good idea. I have been tracking when I have dissociative seizures as well and they are something that could get in the way. Will try and keep record of other symptoms.
I definitely have a tendency towards perfectionism and criticism if I am not perfect. Thanks for the insight Camden.
Today I still managed to get outside but a bit later as I had to shower and I threw my routine off a bit. Need to work out how to fit showers into routine as I don't have them every day.
Had some bad memories pop into my head, while I was sitting outside so I came in and am now snuggling my cuddly animals on the sofa under a blanket trying to help ground myself and feel safe.
Routines have been a big thing we work on with our coach human.
We do not remember the word for it, but do you have other things you do on the days you shower? One idea is to tack the additional thing you need to do onto routines that you already do to help it become more of a habit. So for example if every day when you wake up and have a cup of tea, maybe while your water heats up or while your tea is steeping, you take your shower. Or if once you sit down you get distracted for multiple hours and it feels too late to shower, put your towel or something else down on your chair to remind yourself to shower first. Just some examples we thought of, obviously those specific one may not work for you but hopefully it explains the concept. Basically working out what is getting in the way of you doing the thing and trying to figure out ways around that or ways to make it easier.
Also if you pair it with something else timed that also can help you know how long it takes. That's the other big thing our coach has had us work on is timing how long tasks we hate take. So now for example we know that even though we hate putting new sheets on our bed, it only takes seven minutes. So that helps us try to rationalise getting them done because we know how long things take. We also like to do things we hate while our tea steeps since otherwise we get distracted and then forget it lol.
Just some thoughts, obviously do not feel like you must use any of them and ignore if needed.
Hope you are doing as okay as possible.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
I think part of it is just not having time for all the morning things on a shower day, something has to give. And I really prefer to shower in the mornings.
New daily routine means I need to get outside by noon to get some natural light to regulate my body clock. And while I am working on getting up earlier, currently focus is on consistency with an alarm time of 10:30am (before this I would wake anywhere from 9:30am to 4pm). So there isnt much time between waking and needing to be outside. Once I have been consistently waking at or before my alarm time of 10:30 for two weeks I am going to move my alarm time back 15 minutes. Currently it been 9 days of waking by 10:30 althought 2 days I snoozed the alarm until 11 and stayed in bed.
Plus showering takes quite of bit of energy so generally I have to rest afterwards meaning it takes even longer. Will be easier if I can get earlier wake up times. The simple solution would be evening showers but I don't really like evening showers unless I have exercised or something like that during the day.
Timing might help working out how long I need to fit tasks in.
I am mostly ok, had a few emotional moments but coped ok with them. Had a good day yesterday though
Struggling a bit more mentally the last couple of evenings. Which has correlated with more physical symptoms.But I don't know if physical stuff has been caused because I am not expressing emotions I am not aware of or if physically struggling has been making me down or if physical struggling due to fatigue means I have less mental capacity and so mind let's old mental issues in of an evening. Bad pain last night definitely triggered sh thoughts.
I wish everything wasn't such a delicate balance of mental health, pain, fatigue tremors etc.
Mentalness has been in form of depression, occassional self destructive thoughts / desperation to escape and had the shouting intrusive thought /pseudo psychosis whatever it is nonsense.
I have physio booked in again for next Tuesday afternoon (21st). Got the call from unknown number randomly at 3pm today. I really wish they could organise it less organically / give me next appointment at previous appointment.
I am still failing to book appointment with the totally reasonable new GP about pain management due to fears generate by the old unreasonable/dismissive GP and the whole opioid crisis making painkiller use more taboo thing.
Last edited by long road : 15-02-2023 at 11:28 PM.
I actually made a GP appointment! I suddenly remembered this afternoon that I needed to make an appointment and rather than letting the anxiety build up I phoned pretty much as soon as I thought of it. It's in a month's time so bit of a wait bit I would have been waiting longer if I hadn't got bravery to make appointment.
Feeling low today. Not 100% why. Bit of fatigue and pain as well. Just feel there is a weight on me dragging me down and tears at the corner of my eyes.
proud of you for making the appointment we know that was hard. sending some good vibes for you that the lowness, fatigue, and pain will pass quickly and not get too intense.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
Finding things quite hard right now. Mood is all over the place. Coming in and out of mysel. I guess dissociating although it feels kind of different. I am probably physically safe as my partner is here checking on me. And if I do anything it will probably be because I dissociate just enough to lose impulse control but not shut down. Which is uncommon. And partner would probably notice before I got far or did too much. Only possible tools are in the room he is in not room I am in.
But I don't feel safe.
I don't like my mind right now.
Last edited by long road : 18-02-2023 at 09:43 PM.
The old unsafe and hard feelings have past. I am not sure what caused them but I was sort of spiraling
Pretty sure getting back on routine and letting out some tears is one of reasons the bad stuff passed and had a few good days Sunday through Tuesday. On Monday which was my birthday I was able to enjoy lunch out with my partner and watch wonder woman 1984 in my living room
Been a bit more wobbly physically and mentally last couple of days. Routine has suffered but got part of it back on track by going outside today and I have managed 2 days of adding in new physio exercises. Part of doing worse physically is doing more. Both on my birthday and on Tuesday during my neurophysio appointment. Plus adding in exercises. Still trying to balance it out And physically doing wors effects me mentally it's a delicate balance.
Other part iof mental stuff s some complicated stuff involving realising how controlling a situation I left in 2019 really was. Can't be any more detailed than that but it's been playing on my mind
Last edited by long road : 23-02-2023 at 10:24 PM.
Bit unsure what to say but have read. Can you talk to your partner about it or plan something comforting and easy for the evening? Hope you are able to make it through the night safely and get some rest.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
I am circling around inside my head. I want to say something to my partner but I don't feel able. And if I can't talk to partner I can't ring a helpline because they would hear me on the phone and come check in. And I can't go outside to make a call because it's freezing and the cold air would trigger my asthma. And anyway I never go out alone since FND so partner would hear door and come investigate and then they know.
I know other things I could try but don’t care enough to try anything. Like distractions and meditations and grounding techniques. But I don't want to.
But I don't want to hurt myself. And I probably won't hurt myself or run or any of the things. I haven't self harmed seriously before only superficial. And I haven't attempted suicide in years, not since I lived with my partner full time.
I am probably safe I have survived this before but I wish I could just give in. And it doesn't stop all of this being exhausting and distressing. The keeping myself alive despite suicidal thoughts and the constantly redirecting my mind surfing the self harm urges
Glad the intensity is going down. We hear you. It IS exhausting and distressing to deal with the things you do. We hope you are able to get some rest tonight.
In the future, is there a code word or like a card or similar alert means you could use with your partner to let them know things are bad? We used to do that with roommates so they would know we needed some extra support. It helped us because it meant we did not have to try to talk about things but still got us extra support.
Please do not give me virtual hugs unless you are only using the hug function on threads. Thanks.
You can't always keep it separate.
This is happening, this is part of you.
