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Physical health is continuing to get worse and my mental health is really bad (TW- medical, suicide)
Former Member
Posts: 68 Boards Initiate
hi,
Things are getting really quite bad at the moment.
With my physical health- I have neurology appt towards the end of April which was quicker than expected. A number of my medical professionals are also having an MDT. I'm waiting for a number of referrals but the GP is chasing and is following up with us in a few weeks.
I saw the dietian who said I was doing everything right and didn't understand why I was still losing weight, she was going to talk to the consultants. the GP was also concerned that I was still losing weight because I am eating more than enough. I have to come of a medication that is helping me eat more at the end of the week and I'm really scared because I can't afford to lose more weight because that will mean I lose more muscle tone. My bowls are continuing to get worse and slow down, I am on the max dose for so many things now to try and keep it moving because I don't want to get impacted again (although I might well be already). Like I desperately need to see gastro but they are taking forever. Because I had a reaction to one of the gastro meds it means there are less options and I'm already taking 3 meds all at the max dose, plus a couple of cups of prune juice a day to try and help my gut but its continuing to get worse. I'm not sure what the next options will be if it gets bad before gastro can see me. I'm currently waiting for a gynae follow up because aggoning. Just waiting for so many things and they don't know what to do with me. I know they have referred me to a nation center but got no more information yet on that.
I'm also due another meeting as well as a follow up mid April.
I am currently in the process of transitioning from children's to adults services and dealing with an unpleasant psychologist who I have discovered has been lying about me and transferring her own feelings about me onto me (as if they are my own oppoins). She also didn't listen to me for years when I said things but suddenly when my mum put it in an email she is interested. I am so mad about all that. I can trust her and no longer respect her.
my dissociation and suicidal ideation is worse than ever. I'm at the point where I no longer have the choice to just wait it out I need to act, and do so pretty fast.
There is a local one point of contact for primary mental health services which I have an assessment in the second week of May but that seems like ages away like I have got to survive until then. I am speaking to my social worker next week about some of this stuff.
I'm suicidal and I don't know why. Like its getting really bad and I have told my mum, social worker and behavior specialist. I'm trying to help myself and prevent anything serious form happening but it feels like people are trying but not understanding the seriousness of the situation (my mum definitely does but mental health services I don' think do).
We are also in the process of adapting a bungalow to meet my physical and sensory needs.
so yeah .
Ge
Things are getting really quite bad at the moment.
With my physical health- I have neurology appt towards the end of April which was quicker than expected. A number of my medical professionals are also having an MDT. I'm waiting for a number of referrals but the GP is chasing and is following up with us in a few weeks.
I saw the dietian who said I was doing everything right and didn't understand why I was still losing weight, she was going to talk to the consultants. the GP was also concerned that I was still losing weight because I am eating more than enough. I have to come of a medication that is helping me eat more at the end of the week and I'm really scared because I can't afford to lose more weight because that will mean I lose more muscle tone. My bowls are continuing to get worse and slow down, I am on the max dose for so many things now to try and keep it moving because I don't want to get impacted again (although I might well be already). Like I desperately need to see gastro but they are taking forever. Because I had a reaction to one of the gastro meds it means there are less options and I'm already taking 3 meds all at the max dose, plus a couple of cups of prune juice a day to try and help my gut but its continuing to get worse. I'm not sure what the next options will be if it gets bad before gastro can see me. I'm currently waiting for a gynae follow up because aggoning. Just waiting for so many things and they don't know what to do with me. I know they have referred me to a nation center but got no more information yet on that.
I'm also due another meeting as well as a follow up mid April.
I am currently in the process of transitioning from children's to adults services and dealing with an unpleasant psychologist who I have discovered has been lying about me and transferring her own feelings about me onto me (as if they are my own oppoins). She also didn't listen to me for years when I said things but suddenly when my mum put it in an email she is interested. I am so mad about all that. I can trust her and no longer respect her.
my dissociation and suicidal ideation is worse than ever. I'm at the point where I no longer have the choice to just wait it out I need to act, and do so pretty fast.
There is a local one point of contact for primary mental health services which I have an assessment in the second week of May but that seems like ages away like I have got to survive until then. I am speaking to my social worker next week about some of this stuff.
I'm suicidal and I don't know why. Like its getting really bad and I have told my mum, social worker and behavior specialist. I'm trying to help myself and prevent anything serious form happening but it feels like people are trying but not understanding the seriousness of the situation (my mum definitely does but mental health services I don' think do).
We are also in the process of adapting a bungalow to meet my physical and sensory needs.
so yeah .
Ge
Post edited by Former Member on
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Comments
I totally hear what you're saying. It's a pretty awful feeling when you're left waiting for diagnoses and a better understanding of your health. Feeling uncertain about what's going on for your body and your mind is certainly not nice, especially when you know that diagnoses won't change much about your symptoms.
And yeah it is so understandable that you're feeling angry about being betrayed in that way by your psychologist. They should obviously be there to support and validate. You deserve to be heard and supported as you need
I'm glad to hear that your mum at least takes you seriously, but of course you deserve this from all the professionals around you too!
Big hugs from me and I'm here if you'd like to talk some more
p.s. I'd love to hear more about your bungalow!
We have talked about postponing meetings but then it will just move it to another difficult time (the next three weeks are pretty full on). I guess although its not surprising that my mental health has been struggling there aren't any answer that I can give people that I know will help or any real reason I can pin down in terms of suicidal ideation. I don't know if that makes any sense?
I am extremely lucky in how quickly stuff has come through but still waiting for some stuff which is becoming more urgent but if it could wait a few weeks and then happen that would be great! I guess I know how close I am to setting a date for an attempt and am trying to get help from every possible place before I do so. For me diagnosis are important because it gives a way of verbalizing and explain what is going on for me. It also important so that I can learn about what I need to help myself.
I now have a meeting in a week (which I only found out about today which is bad tbh) to hopefully finish my 117 review. In which I think my mum might be explaining with force. I then have the rest of my CETR follow up in the last couple of weeks of April.
I am 18 in a few weeks which is weird.
Currently the MH assessment seems likes ages away but once it gets more real I am sure it will freak me out.
So we in the process of adapting a bungalow the whole house is wheelchair accessible and all except the bathroom and hall have dimmable lights, switches and plugs all at the right height, widened doors, the right handles, the color scheme is teal and monochrome with some cobalt blue (because medical equipment) the only room that is different is the bathroom which is dolphin themed with some lighter blues- so in my room (which is a big room) it has a rise and fall bed and my sensory swing frame (which is huge), hopeful I will also be able to fit in my medical chair and dog bed for when I get service dog. It will have lots of storage for all my sensory stuff and of course boring things like clothes. the kitchen has a rise and fall unit for the sink and the cook top and a special oven. the bathroom is a wetroom designed for what I need. We did all of this with the help of an OT and surveyor. I am asking to a mosaic Turkish light for my birthday (blue and teal of course). the flooring is nice too because it has grip but you can roll over it and it isn't cold either. I will be able to access the garden as well. Like we are just trying to make sure that it works for me in the long term as the plan is that it will be my long term home (so me and my parents will move in together, I will gradually become more independent and have the right support put in place, then they will leave me and I will get a house mate that I get on with). we were just going over the kitchen spec today (I have a teal backsplash). Its very small once you try and fit wheelchair turning space and all the sensory stuff I need in but it should work and will be a lot better than where we are now (as it is a house and If I cannot walk or crawl I am stuffed). I hope it will give me more independence and save spoons.
Ge
no worries I haven't moved in yet, their is currently no doors, windows or floors! got at least 8 weeks before it will be finished.
I get what you mean about diagnosis, like being able to understand in 'medical' terms what is going on in your body is more than reasonable! (kind of like putting a name to a face)
In terms of the changes being made to your bungalow - a lot of that sounds pretty cool, like the Turkish mosaic light and dolphin theme I bet it'll look beautiful. Although, I know big changes can still feel tough even when they're nice/to make your day-to-day easier, and that's okay too.
I get the impression that you like blue and teal as colours - me too btw! they give off such a warm and relaxing feeling I reckon
Fingers crossed that you can move in soon
Yeah I get that however the suicidal ideation does not go away even when things are going really well and things are pretty well managed.
yeah exactly it also will let me know if I can do or not do anything else to help myself.
Teal is my favorite color as it is calming with a warm aspect to it.
Ge
1000% knowing if you can do anything else always feels like such an important step - having the knowledge alone is sooo necessary.
Totally agree!!! I love colours like that - they're easy on the eyes. My bedroom is the exact opposite - bright white which is not ideal ha. It sounds like feeling calm is really significant to you and I am glad colours can bring that feeling to you
no worries, like having everything happening does make the suicidal ideation harder to deal with.
yeah and its the not knowing that get really frustrating. tbh i am really fed up of my body. I hate it. I am so done with it all. I'm just so overwhelmed with it all.
yeah trying to regulate and get into the green zone are very challenge but very important to me.
thanks
Ge
I'm wondering what your support network is like for you atm? Has anything changed in recent weeks?
Yeah defo! about the green zone - knowing what matters to you is amazing and it's really insightful that you can recognise the challenge of it, but also how important it is
yeah I hate uncertainty and being autistic uncertainty is really tricky. like i am just really fed up of my body and the things it puts me though.
I have an extensive support net work but no one knows what to do if that makes sense. like I currently am under 5 consultants and waiting for a load more, also have the GP who I am currently seeing every week to try and get though all my physical issues. I have a social worker, behavior support, sensory OT, and then my education people (3 of them), I have a person assistant who look after me when my parents are at work, I have my parents and then there are also like the local commissioner (who I soon wont have) and a few others that are more behind the scenes. I would normally do actives like wheelchair basketball, youth theater and horse riding. I am part of my local and a national youth participation groups for SEND. and then I have my friends and extended family. I have a lot of contacts so yeah I am pulling all of them that I can think of.
the only thing that has changed is that I had my first neurology appointment last week, and am now waiting for (if the managers approve) an assessment by secondary adult mental health services.
I'm just really struggling to cope, Like I emailed all the different helplines parapus just frustrated me tbh Smartian are okay but limited like everyone else. I just feel like I am beyond help because like no one knows what to do with me.
so yeah
Ge
It sounds like you've got a lot of people around you who care about you! It's brilliant that you've been able to reach out to them. I know you you've said they're helping you as much as they can, but that there's only so much they can do.
Is there anything you would like people to do that they aren't currently? If there was something perhaps you could ask them to do it in the future, I'm sure they'd be willing to do it!
It's a huge step to reach out, and you've done it so well! I know it may all seem like it's not worth it at the moment but I hope it will be in the future. You're so strong so remember that!
And yes totally, it's great you have so many people (both professional and personal) who work with you and support you, but as you say when no one knows exactly what's going on the support can't be as amazing as if we had a greater understanding
The youth theatre sounds proper cool - I'd love to hear more about that if you want because I think theatre is one of the most beautiful forms of expression !!
In terms of your neurology appointment (1) well done for going, I know they can be scary sometimes (2) have you heard back from anyone about it yet? x
Given how much physical and mental pain you are in, I'm just wondering when you find yourself at your happiest? (feel free to ignore this one if you'd like tho
its really frustrating because I just want to be able to help myself but I don't know what to do.
I haven't been able to go youth theater for ages because of COVID should be back after half term unless we go into another lockdown. I am doing a separate theatre things over the next 3, weeks doing a play.
I have had a MRI following the neurology appt, but not heard anything since from them.
so yeah