Monday 21 October 2019

NICPM Update: Tuesday 22nd October

My first full week at NICPM was pretty full on to say it was a settling in week. There was lots differs people to see from nurses and health care support workers (HCA/NA), my physio, Occupational Therapy Team, various doctors including Dr Trigwell the lead consultant (as he was so senior I wasn't t expecting to met him let alone every week), dieticians, house keepers etc. Plus a whole bunch of assessments, physical assessments and observation, questionnaires and lots of other bits of paperwork.

There were also groups which are all optional. It took me a while to be well enough to go to these and at first I was anxious of gong to these as I struggle socially but the other patients I have met are all lovely. I went o the chair based yoga and relaxation group and the sensory group. I didn't go to the pamper group in person as I was having a bad day but the student nurse taking the group came to my room and did the activity with me (homemade face masks).

We don't discuss personal details in groups but in the sensory group we did a colour visualisation exercise and when we got the the colour green myself and another group member we both visualised ourselves out in a meadow and in the reflexion we both said it was nice to see ourselves outside as we we both housebound.

The other patients I met so far are all lovely and we'll say hello in the corridor. One patient came and plaited my hair for me on Sunday. Another patient at the weekend sent everyone a card saying she was going out shopping and asked if there was anything anyone needed and I'd left my face wash at home so she picked some up for me which was so kind of her.

It's been great to have the support of staff, not just practically but emotionally too when I'm feeling a bit wobbly or I'm worrying about something they're there to sit and happy to have a chat, even if it's during the night.

Over the weekend one of my key workers put a sleep care plan in place with me.

Each shift: Morning, Afternoon and Night you get allocated a key worker and you get 1:1 time with them if needed say to have a wash, do paperwork, have a chat, paint nails etc if you wish, but all the staff are free to support you too at any point day or night.

I've gotten used to not feeling a bother pressing the call bell now.

Yesterday (Monday) I've felt a bit off kilter. With my key worker we identified that it was because last week was so busy an exhausting and I was anxious about having another exhausting week, so we decided to keep today low key I have no idea about tomorrow. I'm trying to utilise the support of the staff and make the most of my time here and talk to the staff when I'm struggling. I also feel there's a pressure to cram in as much work and make the most of my time here which feels like trying to achieve the impossible.

Last week I got referred to podiatry as my toe had been sore (Dad told me it was nothing but it turned out to be an ingrowing toe nail). So podiatry came today and she said because I'm mostly in bed I needed a better mattress so they ordered for me an air mattress which came pretty quickly so I'm on that now and hopefully it will take the pressure off my joints too. I had a short session with the OT today so today was fairly low-key.

Staff have been listening to what helps me with my autism such as my communication cards. Another thing I find helpful is the staff using the wipe board to put notes and information on like when my next physio and OT sessions are, who my key workers are for the day, and reminder such as to brush my teeth, the plan of the day ect. I have a range of coloured wipe board pens and staff are getting more and more creative with using different colours and drawing pictures.

Yesterday I just hit rock bottom physically but more emotionally but I had a chat with the staff. I think what's not helping is the fact I've not been sleeping well waking up in the early hours.

Today (Tuesday) I thankfully have nothing on. Not OT or physio etc and groups are optional so I'm just going t have a recharge day. My key worker this morning asked me if there was anything I wanted to do so I opted for a hair wash. I'm trying to break challenging tasks like washing down so today will be a hair wash, then on another day I can just focus my energy on washing my face or body. My OT is going to help me work out which my baseline is to prevent the 'Boom and Bust' cycle (he called it something else but that's what I've known it to be called. He's also going tot help me with activity management and eventually putting together a daily time table.

I've had some post recently. My pen pals have been sending letters here. Yesterday my Moomintroll light arrived and when I woke up in the night it was nice to put that on as I'm still spending most of the time with my room in very low lighting. Then today my © Stickman Communications order came. i got a couple of positivity posters and some more pacing post-it notes as well as a couple of cards, one for when I'm struggling with my speech and the other is a bather nom break so if I'm in a group for example I don't need to announce that I need a bathroom break.

Also this morning one of the other OT's came to give me a leaflet as on the unit there's going to be an 8 week printmaking workshop which is really exciting as I love printmaking and surface design. Plus it will be  positive challenge to be ready for the session at 11am. (I'm not a morning person at all) so that's all exciting and it's nice that I'll be here for that.

I'm getting used to my air mattress though the pump for this one is a bit noisy, but my headphones help and I'm sure I'll get used to it *hopefully*. M.E and noise are an unhelpful mix.