Sunday, 3 November 2019

NICPM // Update // 3rd November 2019

The start to my second week here (last week) was a bit off kilter. I was feeling anxious and overwhelmed at having such a busy week the week before and the thought of having busier and busier weeks ahead of me and the pressure to make progress felt all too much and emotionally I hit rock bottom.

I've not been sleeping and I'm still not. I keep waking up in the night last night (today is the 31st) I was awake 4-7am is in really bad pain and today has been a bad pain day.

I'm making to most of having the support of staff and communicating when I'm struggling whether it be physically, emotionally or socially.

Frustratingly at the moment the dietician is on leave so getting my nutritional shakes prescribed is on hold so meal can be torturous at times for my gastro problems and being told by the drs to 'just try with eating' doesn't help.

What I've done is really scale back on activities, so for example I'd spend all day just writing one letter and pace the activity out. Or if I go t a group I'd just go for 10 minutes or stay in my room to rest. I think on reflection during my first week I tried too hard as in my head I was hear to get better (well as much as possible; I know being here isn't a miracle cure) and I just totally over did it leading to my meltdown the following week.

The ward has been given funding for an artist to come in to do and 8 week printmaking workshop which is exciting. We did the first session last Friday and yesterday as oe of the weekly activities we painted some backgrounds.

Tomorrow one of the staff is bringing in her dog who is a PAT (Pets as Therapy) dog and I'm really looking forward to that.

At the moment I am spending a lot of time in/on my bed so as a result I'm having to have daily anticoagulant injections. There's a nice student nurse on the ward at the moment and she's done today's injecting - it was her first time on a patient but she did really well.

Friday was okay. We had the printmaking workshop again. I was getting tired but I wanted to finish what I was doing especially as I'd made up the specific colours I was using. I overstepped my limit again and ended up having an series of seizures.

Saturday my priority was getting a shower as Id been prioritising my energy elsewhere.

The payback from that has been extremely difficult. My immune system has flared up and I have a horrendous migraine.

I didn't sleep well at all. I woke up just after 4am; around 5am I was still awake and still in pain so I asked for some pain relief. I couldn't get ff at all so I just lay listening to audiobooks and I was felt freezing cold.

Today is Sunday (3rd November).

One of the things that's been getting to me which I was going to bring up at the forum but I mentioned to staff this moning is bank staff coming into my room and putting on the florescent lights without asking me first. Last night the bank staff cam in andmy room was dimmed for  a room for a reason but when he came in as soon as he reached for the I sat 'No!' but he still put the florescent light on (which is the worst thing ever for me) and I when the light am on I immendiadly wet 'Argh' to which he released he'd done the rong things, but what was worse was later in the evening/night he came in again and again he immediately put the lights on, again! You would have thought he's have picked up not to put the lights on the first time. It's to the first time with bank staff either. Sure they can't take in everything and they don't understand like hypersensitivity to light because of conditions like M.E. or Autism but it dons't take much to ask first and surly if the patient has a dimmed room it's dimmed for a reason. So staff today (Today is Sunday (3rd November).ave put a sign over the florescent light switches which say 'do nt use', so hopefully that all get the message across that one the dimmable light is to be used.

I didn't sleep well at all. I woke up just after 4am; around 5am I was still awake and still in pain so I asked for some pain relief. I couldn't get ff at all so I just lay listening to audiobooks and I was felt freezing cold.

When my alarm went off I still had the awful migraine and feeing flu-like. On top of that the bank staff didn't check the allergies board in the kitchen and put cows milk on my cereal, thankfully I soon realised but I had the symptoms of that to deal with also. Because of my migraine they had to get the cn-call dr to prescribe me a second dose of Sumatriptan as here I'm only allowed to have 2 in 24hrs as opposed the the three I can have at home. I would also love a Lemsip right now but they/re not prescribed

I've spent most of today in the dark listening to podcasts. I did change out of my pj's to go to the creative writing group which was good and a nice distraction but it's massively flared up my stymies.

When I'm like thins I get frustrated with my health. I want to be able to enjoy a short group and not payback delay with feeling so ill and glued to my bed because being able to lay down ives me some relief. 

I'm trying not to think too far ahead and just focus on each day one at a time. But I hope once I can cope a bit better I can sit in the lounge /conservatory for a short while or enjoy getting out my bed.

Even though I've st goals with my OT it's nice that here's no pressure to meet the target/expectation buy the end of the week and that my care plans are fluid. Like sometimes when I shower I can do more but if I've neglected my washing and it comes to the point where I have to push myself to shower and I need more support then that's okay.

What I like about the philosophy here is that we're not pigeon holed by with illnesses we have. Everyone's care is unique to then and I'm seen as 'The is Naomi; these are her symptoms, this is was concerns her the most; these are her needs and these are her goals' etc. I'm seen more as a person who is struggling with her health biophycosocialily (bio = the physical aspects of my health e.g. symptoms, psychologically = how being chronically ill/disabled affects me and how stress for example affects to bio and socially = how my disability affects me socially, such as joining in groups or feeling isolated) and they all interconnect. For example migraine = bio, migraine pain gets me upset = psychological and socially = being isolated in my room in a low sensory environment.

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