How is your physical body doing? How are your pain levels? Sometimes for us when things go wrong physically our brain can get confused and it makes things bad in our brain instead. Just one other thought we had.
We forgot about the holiday messing things up with GPs :(
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.
Pain levels are pretty low grade. Last night was in pain but the weird grippiness did numb itt up. Today can feel the pain is probably at a 2 or 3 /10. Very tired and my sleeping pattern is messed up. Did not sleep until 4am the night before last due to seizures (Wednesday into Thursday) and then slept until 1pm and fell back asleep 4pm - 9pm and didn't sleep until after 6am last night (Thursday into Friday) mostly because of the weird and woke up at 1pm again.
Will keep an eye on weird and hope it stabilises. It does feel a bit more conventional dissociation now though. But intermittent manic like bits. Whispering is quiet for now
Last edited by long road : 07-04-2023 at 10:26 PM.
Sad and trying to let the emotion out but it feels too much.
I don't really know how to help myself today. Because resting like I have to do because I feel physically rubbish is making me mentally feel trapped. Can't even make it to the sofa today and seeing these same 4 walls is a lot.
Wish the pain could stop or that I only had physical or only mental stuff to deal with both is too much. But it doesn't work like that so I wish there was an easier way to check out of life. And wish I didn't know that me doing that would hurt people.
But that's not how it works. I want some support but I don't know what would help and I feel bad just babling like this.
I'm sorry but I have no words right now. Just wanted to say I'm sorry things feel so bleak right now. I hope you can work through this safely. I hope someone else has some advice for you.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
Do you think you need the stronger pain meds if you did not already take them? We are so sorry things feel so intense now and we hope they ease as soon 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.
Pain is still there but has calmed down a bit from the intensity of earlier, yesterday and Friday. So not taken strong ones yet today. I am probably over cautious with when I take them but I do take them more readily now I have access to lower dose which has less side effects. Might get my TENS machine out.
I am still sad but Microsoft locked me out of my email which made me angry enough that I rage got up and went to my computer to fix it as I couldn't fix on my phone. Very tired now and back in bed but at least the rage got me out of the bedroom.
I am still don't want really to continue living in the life I have but also still have little intent to take action to stop my life existing.
After many hours of trying not to take strong painkillers I ended up taking them anyway at midnight. Today still been feeling rough physically and since I fell asleep at 3am only been awake about 3 and a half hours total.
Now I have been awake about 2 and 1/2 hours and had dinner I feel a little better physically but very down mentally still. Also my house is a mess and neurophysio is coming round at 1:15pm tomorrow and I wish it was tidier but have no energy.
Wish I could act on thoughts but deep down know that's a bad idea
Last edited by long road : 10-04-2023 at 07:59 PM.
Reason: Added last bit
no good words at the moment but we read and we believe you and can relate to wanting things to not be how they are but not being able to take any actions. we hope things went as okay as possible with the nuerophysio human and they were kind. we hope you are able to get some rest and take care of yourself as best you can.
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.
Neurophysio human was very kind on Tuesday. And actually asked more questions about weird mental bit that caused some symptoms than I would have expected mind you she does work in a multi disciplinary team with psychologist so *shrugs*
I was having a vulnerable day and ended up getting leg spasms and twitches and dystonia while she was there. Which was kind of good because it meant she could give me an idea of how to try treating them but Its never nice to exerience and it meant I spent the rest of the day in bed. I also lost my social capacity towards end of appointment and ended up going to lie down before she left. My brain was completely fried.
Seeing her again next week. She sent an email checking into see if I was ok after appointment as she could see my system has been very sensitive.
Last couple of days have been good. Have got back into my routine and been able to do stuff and pain levels have been low. But I keep waiting for the bottom to drop out. Things have been weird enough lately I am suspicious of a good period...
Last edited by long road : 13-04-2023 at 09:13 PM.
Reason: Autocorrect appointment to approval
I'm glad it went well with neurophysio and that she was kind and saw some of the things you struggle with. Although it's not good that you ended up in bed for the rest of the day. That was nice of her to check up on you via email, I hope she continues to be a positive person for you.
I understand the feelings that can come with having some good days. I hope you can try to just enjoy them and the things they allow you to do while they are around.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
Thanks for the reply OSC. I am having a not so great day physically but just about managing not to let the bad mental stuff fully join the party. Just being worn down. Pain and my mental health really don't get on.
Stretches I was taught do help unfortunately the help only seems to be a temporary relief. Shall have to talk to physio about how to deal with rebound muscle tension.
I hope things are better for you today. You are such a fighter with everything you put up with and try to manage. I hope your physio has some helpful advice.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
Had physio again today and have some new exercises to try and a bouncy exercise ball to try them with. Then had a late lunch and a nap because I was exhausted and I've not been awake long. In a bit of pain.
I am not sure I would call myself a fighter, but I appreciate it was meant as a compliment. I keep going but I am not really sure how or why a lot of the time. I wish suicide felt like an option but I know it would hurt my partner and family and my few friends. And I don't want to hurt anyone else and share the pain of my mental health journey over the last 13 years of involvement with professionals. I can't hurt anyone else, the idea of hurting me seems ok, but the idea of hurting other people especially ones I care about, but even strangers like people who would have to deal with my body, is just complete anathema to me. Maybe it would be accurate to say that love and not living alone are some of the biggest things that keep me safe and keep me going. Sometimes though I wish I could either go all in on suicidal or self harm thoughts and stop caring about others feeling and just get to end my suffering.
Not feeling particularly positive this evening.and this may have turned into a bit of a rant. Maybe I am being too harsh on mysef, I do have some influence on my action or inaction and I have got better at asking for help. And better at managing FND and my mental health in general. It's just it doesnt always feel better enough and the continued struggle drags me down.
I don't quite know why but despite being in pain and fatigued and that I am not doing anything about it. Like choosing not to do anything about it. I wonder if it's a sort of self harm.
I made myself hang up washing cos it needed doing sooner rather than later and my partner is having a nap so couldn't ask him to do it. Got it in my head that.it would be a disaster if it wasn't hung up today and had to be rewashed. Which isn't rational, and even though I did it I don't feel better, my brain is onto the next task that needs doing and saying if I don't do then that's a disaster.
But knowing it's not rational and not believing it are different things.
I am confused and in pain and a bit unstable to be honest. And because my partner's is asleep I can't let myself tell him / ask him for help.
I can relate to not doing anything about pain and using it as a sort of passive self harm. I hope you can rest and have pain relief though, you don't deserve to have to go through this. Use your choices properly.
I can also relate to the feeling of having to get things done or things will be a disaster and knowing it's not rational but feeling it anyway and sticking to it as much as I can. It sounds like you're struggling with lots of things right now. Please remind yourself that things will be worse if you don't have enough rest and adequate pain relief. It's ok to leave some tasks to another day even if you don't feel like it is.
Have you managed to talk to your partner? I assume he's awake now? You can always post here if you need to. You can do something about your pain, do you want to talk about the feelings of confusion and instability?
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
He was awake by around 6:30/7pm, he knows things aren't right. But I haven't explained much other than physically and mentally being eurgh. And shouting at him when he tried to suggest I try meditating or grounding. Because I knew there were potentially helpful things I could do / maybe should do but I couldnt do them just couldn't get in the headspace.to help myself.
He can see I am tired, he doesn't know I am in pain because if he did he would try and persuade me to take painkillers. And pain is enough to bother me but also kind of grounding. It's not screaming agony unbearable.pain so it's fine right?
Only just had dinner cos it took him a while to wake up and I wanted to cook before or order takeaway but sleepy him didn't want takeaway and wanted to cook but it took ages for cooking to happen. And I am not mad at him about that, but I did get hangry which didn't help. We have agreed if a similar scenario happens again I should order dinner as half asleep partner doesn't make decisions well either. Hopefully now I have eaten I will feel a little less physically wobbly.
I didn't do any more chores. I still feel bad having not done chores but partner persuaded me not to push myself further.
I am.kond if zoning out, may even be dissociating a bit from pain. Which I think is what is.leaving me confused. Just hard to hang onto things and like know need to try.and not zone but I also don't care. Like if I did self care.it would be because that is what you are meant to do not because I wanted to.
Got up late (1pm) but I didn't sleep until 3an so trying to let my body off on that one. Although I did wake first at 9:30 but went back to sleep after breakfast as I wasn't fit to function
In general has been a bit of a better day the 5 hours I have been awake. Had a shower, ate lunch outside in my garden in the sunshine, and hung out with partner for a bit.
My partner has done some chores while I was asleep which stopped my brain saying I had to do them as they were already done. Plus partners parents kindly came and mowed and tidied our front garden. Which is another thing off the list.
About to rest now as fatigue and a bit of fuzzyness has hit but feel a bit more able to try things to help myself today.
I'm glad you are listening to what your body needs and not getting on to yourself for getting up at 1pm. It's good that you're giving your body some understanding. Sounds like you've done some positive things today and other people have helped you out too. I'm glad you have people who can do those things. I'm also pleased that you feel more able to try things to help yourself today, I hope it continues. I hope the rest helps with your fatigue and fuzziness. You deserve to feel better even if you might think you don't.
I put it down on paper and then the ghost does not ache so much.
Don't try to calm the storm, calm yourself, the storm will pass.
It's tricky, I don't know how to reach myself when I am in a place like yesterday where I have enough awareness to know something is wrong but not the motivation or care/self compassion to do something about it. It's not even not knowing twhat he options are. Like I could think of a load of options to try: grounding exercise, visualisation, meditation, listening to music, napping, painkillers, heat packs. Or even a distraction like word puzzles. But I would dismiss everything out of hand as too much / not going to work.
Like how do I get through and let myself help myself when my head is in that space?
Rest sort of happened, but pain stoped me settling so did some physio and got up and took some painkillers. Think pain is getting to me as my ability to focus is going out the window somewhat.
