re-enablement bad visit - advice

Jenwren

Hi

I wonder if anyone can give me advice, I'm on my third week of re-enablement after requesting a care needs assesment due to various disabilities and health issues including but not limited to CFS and ADHD. The re-enablement is one visit per day geared around food/meal prep at around 5.30pm.

Prior to this I didn't have any aids, equipement etc so I had an OT and the equipment including a perching stool arrived a yesterday. Up till now re-enablement has been preparing my food due to my extreme fatigue and pain, but today I had a new carer and I don't know whether it was because the equipment was now here and this is how my sessions are going to be now, or whether it's just her as a person, she was really pushing me to use the perching stool despite me saying I was in pain (I was on the sofa with my legs supported underneath, and she basically said now the equipment is here I need to use it (or words to that effect) despite me explaining numerous times that even with equipment if I'm say bed bound that day or in too much pain, it doesn't matter if I have a perching stool if I'm too tired/in pain to get to the kitchen to use it.

I ended up very slowing going into the kitchen with my walking stick, and microwaving some rice, having to sit on the perching stool during, then she made a drink and carried that and the rice into the lounge for me to eat and we talked for quite a while, but I felt awful physically and mentally. She was also I think a fairly negative person and weirdly has fibromyalgia herself so I thought she'd understand not being able to do things.

I've got her tomorrow (and may have her three more days) - I've got to find a way to tell her tomorrow I cannot use the perching stool and stay sitting on the sofa but I'm terrible at standing up for myself, I live by myself so I don't have anyone to support me. OT has said she and my social worker believe I'll have on going needs but they need to see how the equipment works for at least a week so I could potentially end re-enablement early but I doubt it.

Has anyone been through re-enablement and they felt pushed/forced into using equipment when they didn't feel well enough - I'm going to be a genuine wreak tomorrow and I'd love to cancel my re-enablement but I already cancelled my Monday session as I was feeling bad. Any advice - please? I know I need to stand up for myself, but I'm terrified. I just want to hide - but as my brother said unless I stand up for myself they'll just insist on me using the perching stool to 'prove' I don't have care needs - for re-enablement their mission statement is to get people indepedent so they don't need care/support. I'm really scared about tomorrow despite being a grown woman. What if I say I can't get to the perching stool and she keeps insisting?

I know it's stupid but I'm really scared.

JessieJ

Don't be scared, just fully explain why you find it difficult & painful & that you can't get on with it.

I was assessed, given a perching stool & a step for the bath, I already knew they would be no good, as I bought myself a stool years ago. The step I just knew I'd be too high to then get down to the bath seat & then too low to get up. It was no problem & I was told to keep them anyway, as they were mine. The one thing that was brilliant, a trolley to take my meals, odds & sods to & fro. That was/is perfect & I use it multiple times a day, so maybe ask for one of them, something that could be useful & helpful to you.

Jenwren

Thank you for the advice, I'm still nervous. I find it difficult to be assertive over my care needs.

If you don't mind me asking how did to 'prove' to re-enablement that the equipment wasn't helpful - or did they just listen when you said you couldn't?

The lady yesterday basically told me because I've got the equipment I've now got to use it - I felt she was saying 'no matter how bad you feel - I need to see you use it'.

I've ended up with a bad CFS flair and can't face getting dressed or going downstairs (which ob I need to to get to kitchen/perching stool), I'm going to ring the helpline to ask what I'm supposed to do during a re-enablement visit that's for food when I can't get downstairs (but in a very polite way)

I've got the same carer at least today so I'm dreading that but I'm hoping me being in bed in my PJ and struggling to get up will prove I can't push myself when I'm in pain. I've been feeling like I'm heading for a CFS crash anyway and I desperately want to avoid one.

Thanks for your comment

Mary_Scope

Hi @Jenwren

I'm sorry to hear about your experiences with re-enablement. they sound like they have been really stressful for you. How are you feeling today?

It might really help to have a little “script” ready in case she asks you to use the perching stool again. Knowing what you want to say ahead of time may make you feel more prepared and calm during the session.

Personally, when I know what I’m going to say in situations that make me nervous or in situations I’m worried will make pain worse, I find it helps reduce my anxiety and makes me feel more in control! Saying it out loud a few times before she comes can make it a lot easier to speak up when you need to and its okay to say no.

Maybe something like…today’s a bad day for me physically and I need to stay on the sofa. I know I have the perching stool and I’m willing to try it when I feel better but today I’m too fatigued and in too much pain.”

I hope the session this afternoon goes better and you feel more comfortable 😊

Jenwren

Thanks for your comment, I apprecaite it, I've rang re-enablement (I had a script - I always have to have them as I get really nervous) and said I was bedbound today and I'm not sure if I'll be better tomorrow, so the carer knows in advance and they said she'll just let herself in and bring me some food. How it'll go and how she'll be, I'm not sure - I just hope she doesn't push me or be difficult.

I'm greatful for the re-enablement but it's very tricky when you've got multiple fluctuating long-term conditions and really re-enablement isn't geared to that as it's about getting people independent (which is awesome) unfortuntey my health has just been going downhill the last few years and you can't 'push through' with CFS.

Thanks for your support and encouragement, I'm hoping the visit goes OK, but I have no clue if I'll have her the next two days as well (they do four days on for days off) and I do get anxious not knowing who's coming and what they'll be like, but hopefully I can get some on-going support through this

thanks again

JessieJ

Hi @Jenwren, I hope you were heard today & you felt better because it wasn't so difficult as you'd forewarned how you were. Sometimes it is difficult to be assertive, quite often it's because we don't feel heard or understood, or, we don't explain enough as that is a downer.

It seems I was lucky with my Independence person. She came out to talk & see what she could come up with. I did mention the perching stool then & that I thought the step wouldn't help. She said she'd order them anyway & see how we got on. I was also offered a few other things but I knew they wouldn't work for me. She came back with the stool, step & trolley. She saw then that the first two weren't going to work & that the trolley was perfect. She did add that the step might be handy in the kitchen & must admit, I have used it a few times, it's a big square thing so takes my feet & crutches! 😆

So, if you can think of things that would be helpful to you, do ask. Maybe look through a site that sells these aids to give you some idea of what is available first off. Also, think of what will help on your 'good' days so you suffer less after.