It's been a long time but things are getting bad

[one_step_closer]

Are you going to have your partner with you? Make sure you do get to talk about everything. Maybe if you have it on paper you could tick off what you've said so you know what you still need to say if they ask if there's anything else.

Are you getting help with filling in your PIP form?

[long road]

Probably will do most if assessment alone but might ask about bringing him in at the end of the assessment. I think I should be ok to cover it all.

Just me and my partner working on PIP review form.

Can't sleep because of my asthma. Finding that it playing up is making me scared

[long road]

Breathing is a bit better today but mentally I am not okay

And The don't know what to do about being not okay. Or what it means like I am having thoughts but I don't think I 'll act on them but I am a ball of distress and it seems so hard just to keep existing today

[one_step_closer]

What's the distress like? How have you been managing?

[long road]

Called somewhere earlier but had a seizure while on the call so ended it early (more detail o in my RV). After seizure I rested a bit and was still very fragile emotionally, spent a little time sitting with my partner which sort of helped but still unstable. Got him to leave m alone now, hate to admit it but partly that was because I am tempted to harm and couldn't get away with it with him here. But part of me also wants proper vacy to maybe try and call first response back like last said I could.

[one_step_closer]

Would you not feel guilty if you sent him away only to harm yourself? Having privacy to make a call sounds like a more productive thing if you can manage.

[long road]

I called and didn't harm in the end. And then had a nap.

I might feel guilty but the need to harm at the time outweighed anything else.

[one_step_closer]

I understand that. Self harm urges can be so overpowering. I'm glad you managed to phone someone instead. Please keep trying to make that the first option.

[long road]

Had a bad day. Spent my day in bed and a lot of it asleep. Had bad dreams last night and when I woke up was very wobbly and had a load of seizures when I tried to get up.

Mentally not ok either. Had the screaming inside my head. Phoned somewhere and it helped a little bit. Went to sleep listening to music to escape the screaming for a bit. Getting self harm urges but haven't acted on them. Just feel like everything is a lot and too much.

Assessment is at 12:30pm tomorrow online. I am nervous but at same time glad to be getting it done and knowing what the plan should be.

Was meant to work on my PIP review form today but haven't been well enough.

[long road]

Well that went ok I think.

She is going to discuss my assessment at MDT meeting on Tuesday next week and then send out assessment letter confirming what the plan is.

She asked what I wanted help with and I said my points emphasising the primary ones being stopping self harm and dealing with trauma. Her rough plan was self harm coping skills with a recovery person from mental health alliance and then EMDR somewhere. But realised she didn't mention getting a CPN or anything and was talking about EMDR from other services so may be I get help without being under CMHT??? I did mention that IAPT wouldn't take me on while actively self harming and she was like well they want three months clean I think so maybe that something you could work towards? Thing is trauma triggers self harm so not entirely sure what will work. Also forgot to mention that neuropsychogist thought I was too comex for IAPT/ recommend amended any therapy should be with a psychologist.

Mentioned therapy I had done before but forgot to mention I had done CBT before but didn't find it helpful. So hope recovery worker thing wouldn't be CBT.

If needs be with EMDR thing I can ask Neuropsychogist to help explain my needs / give his professional opinion

Maybe I should have mention need someone checking in with me / support I guess recovery worker might be that but again am I too complex for that will it help. Will reserve judgement until I get plan in letter, it might not be under CMHT but at least it doesn't sound like no support at all.

[one_step_closer]

I'm glad you feel like it went ok. It sounds like there are still things that are unclear though. I hope they can sort out some support that suits you and they don't take too long getting back to you with the plan. Do you feel like you can relax a bit now?

[long road]

Didn't end up getting partner this come in got a bit overwhelmed and forgot to ask about itm Also she is going to send me some PTSD coping technique things.

Ninja Lindsay.

I should gett letter with the exact plan sometime next week or so after she has discussed my assessment at team meeting. Sound alike I should get something but not sure if it will be the right something.

Not super relaxed. Don't think I will relax until have the plan.

[one_step_closer]

Having some things to try yourself while you're waiting for support sounds positive. I hope you can use the coping techniques and they are helpful.

Do you think you would be able to say if the plan doesn't suit you? Maybe they would be open to trying something else if it's not what you need but then again it could be worth trying what they suggest even if you're not sure if it's the right thing.

[long road]

I will say if I they suggest EMDR with IAPT that I am not sure that is appropriate and that neuropsychogist thought that wasn't appropriate. But with other stuff I will try it first and see if it works or not. I will try anything really. Plus sometimes you have to play the game, and show you have tried the thing and it did or did not help.

She asked if I had a suicide plan and I said I didn't because I don't have an active one right now but should maybe have explained that I still think about November plan just don't have date anymore..

[long road]

Been working on PIP review form today. Got the section 2 which is all the factual bits like clinicians that treat you, what conditions you have, what medication you take, what treatment/therapy you have and how many hospital admissions you have had drafted.

Going to rest now and then get to start the more triggering bit of the form where I have to explain my care needs and difficulties with tasks and have to word it in the right way. I currently get enhanced mobility but don't get he care component at all. It felt really devaluing last time that they didn't think I qualified for certain points on the care parts despite how much my partner has to help me and the risks related to my seizures that mean I don't do certain things like cook most days as it doesn't feel safe. With variable conditions I think the rule of thumb is if it is true over 50% of the time then you qualify for the descriptor so going to bear that in mind and make sure if it isn't a constant thing I mention the frequency it occurs so that they can't say I am being dishonest.

Am stressed even thinking about filling it in.

[one_step_closer]

Well done with what you've managed so far. It sounds strange that you didn't get the care component. Is there someone you can contact who knows exactly what the DWP look for? I always get help from a place called Money Matters.

[long road]

I am looking specifically at the descriptors this time and trying to target my answers to them. Don't really have time to consult with anyone else as form has to be with them by 12th January so want to post it by Wednesday 10th January on next day delivery so I get a receipt of
when I sent it. I already got an extension because of a previous head injury and I am behind in filling it out because of my asthma being so bad in December.

I also have a copy of their decision letter from last time that contradicts itself so will make sure to emphasise the true bits in my answer and refute the untrue assumptions they made that they used to justify not awarding points.

Oh and going to attach all relevant hospital discharge letters and care plans.

Nothing has really changed mobility wise other than getting out less/ walking less far because of asthma/ shortness of breath. So just drafted my answers to planning a journey and moving around questions using my answers from last time with some added detail about asthma.

Still got to draft answers to questions 1 -10. But think I will aim for question 1 and 2 and then stop for the day.

[one_step_closer]

It's so much to do. I hope you get it sent on time without too much trouble and they don't mess around.

[long road]

It is a lot to do.But making good progress. Didn't end up doing question 1 and 2 in the end instead reviewed which of my medical letters I wanted to send as evidence and printed out copies. Going to try and reference them in my answers. Basically trying my hardest to have it be an accurate picture and be totally honest but not give them opportunities to discount the difficulties I have like they did last time by backing stuff up with evidence.

Reckon I can get the rest of it drafted tomorrow and then written up on Tuesday. It will be a bit of a push but not too bad. I have always been a bit deadline driven! It's so stressful doing it so its almost easier to do intensively.

The daily living questions are going to be the hardest mentally and those are what I have left to draft. Feeling very agitated now even though I have stopped working on it for the day.

[long road]

At some point today (it may already have happened) the person I saw on Friday was discussing my assessment at the multi disciplinary team meeting. It can be hard when you know people are having a meeting about you but you aren't there. And it's made me anxious. Because that meeting could influence what support I am offered and I won't find out how until I get the letter summarising my assessment and letting me know the treatment plan, some point in next week or two.

Nothing I can do about the meeting but need to find a way to cope with the anxiety. Ironically I forgot to mention how anxious I get about stuff during my assessment...