I woke up last Friday morning feeling very weak . My head was all over the place and I was struggling to decide what to eat for breakfast. I was actually overtired, agitated and it had been an up-and-down week. I was due to see the district nurse to redress my diabetes foot ulcer and a small wound on my toe, my GP was coming a bit later with the palliative care consultant to put together a care plan and later in the afternoon I had a research trial management group phone meeting which I was really looking forward to.
The district nurse came but she was on her own v new and I normally get 2 nurses and one helps the other or a healthcare assistant helps . However this particular nurse wasn’t confident on a previous visit and made mistakes so I had to ask her to leave because I wasn’t able to look at what she was doing and teach her what to do at the same time I was very agitated as she walked through my door.
I went to have a rest and whilst waiting for my GP and consultant my head is flying all over the place . Ironically a week before seeing the bariatric medicine consultant and the lovely dietician that the transport issue at UCLH is too much for me they sent the wrong crew all the wrong vehicle and then I’ll wait three hours to get home stuck in my wheelchair and it takes me a week to recover.
Completely with pain exhaustion overwhelming me and I was trying to get the energy of this important lunchtime appointment. The fact that I skipped an important dressing change and a high risk was too much to even think about.
I got up to go to the toilet are use a bariatric walking frame and I have a jack and Jill style bathroom so I can go straight in from the bedroom to the toilet. I sit down and my legs feel so weak. On my right foot I have the toe amputation on my left foot and A Long-term ulcer I’ve had for seven years. The blue line bandage can slip .
The doorbell went. I got up from the toilet I left foot slipped gave way and I went flying into the shower landed on the floor. My GP rang 999 we decided not to tell them I have oxygen to try and speed up how long will they take to come. Meanwhile the consultant got my duvet and pillows and got me comfortable and I had to have some glucose as I pre bolussed for lunch but had no lunch.
I haven’t had a fall for about six months and definitely not concrete for a long time.
So Dr X sat on my loo and said ‘ it’s been a while since I saw you . I think your battery is running on empty .’ She agrees when I say how I meet certain EOLC criteria and I have sarcopenia however this isn’t discussed in those patients who are under 65 ….. I tell her I read all Geri soc tweets and slides thinking….
I cried . She told me how the hospice team can support me , counselling , physio & OT assessment to check out my needs ……. my clinical issues discussed . If I get pneumonia I have said I don’t want hospital in any circumstances or picc lines . I want home treatment. I said it’s winter I’m aware my high risk time. She told me she agreed Hospital is not the place . No bariatric set up , no special diet I’m on , poor pain management ( neuropathy etc) as they don’t know me ( it’s not just about prescribing it’s furniture and support ) . Plus I’m more likely to die in hospital because of my own clinical situation . No she had no idea how long ……. I said I can’t do this …… so her response is very positive. She said that’s ok you’re feeling these things it’s normal in your situation. It could be a year it could be …… However let’s get you support to make the journey more comfortable. We have a whole team and we are here for you . Befrienders can come and sit with you and yes once you more confident on power chair let’s get you to our day centre with dial a ride .
She leaves with a joint plan . She’s honest too.
The paramedics come , 90 mins later just one crew not two they don’t have another crew to help ……get me up . I’m sore very sore . I refuse a/e as nothing broken . It’s again no bariatric set up and my local a/e is windowless and where I went with septic shock and lost my toe I’m too exhausted and in such pain to explain. I have a preferred a/e with good care plan fast tracking at the Whittington I feel safe there but I really have no need to go .
I refuse ECG they didn’t like that but there was absolutely no point I didn’t have chest pain tachycardia and it may have come out abnormal anyway because of my type to respiratory Failure . I just said no ……
They asked for a list of all the medication and I questioned the process when I’m not going to the hospital but they insist and take my bag I meant to write it all down all I want is my space back I want to cry under the duvet. They bothering me by doing their job. Just go just go …….. I’m exhausted my left leg that I used to get me up over the blow up thing they …. is agony as I have meniscus tear . I need a drink but then quickly realise I’ll need the toilet and too sore to get back ……. I skip the drink take extra pain relief and rest my head remembering the TMG in an hour ……
I needed normality ….. meanwhile the Ocado shop from earlier which hasn’t been out away in my kitchen two carers from here came but didn’t know me and couldn’t understand what I was asking whilst I was lying on the floor about frozen food going in the freezer and fresh food going in the fridge. I needed some drinks for the bedroom eventually a really good carer came later.
My breathing is still very heavy from the shock , my saturation levels are absolutely fine. I need to eat but I physically can’t eat so I shoving in a couple of glucose tabs have a banana and make the conference call. On mute out and listen and join in occasionally and I feel relieved and I’m thanked by the chief investigator for helping with a few things.
These are all part of my day stop however every single day there is something that raises my stress level to an exceptional level. I’m finding the phone calls I have to make about hospital transport, get anxious that the transport won’t mess up I have an important appointment this Wednesday to see a bariatric medicine consultant about supporting me , genetic testing and continuing work with the bariatric dietician. Juggling insulin & Victoza is hard really hard . I struggle to complete my food diary there’s too much going on but now the hospice will support me maybe my head will settle a little bit so I can focus on this important very important treatment. It’s really helping the Type II diabetes my blood glucose levels are better overall and I’m thankful I can use the libre sensor. I have an amazing dietician Adrian Brown his time is not commissioned so it’s good will through the R&D budget and I’m grateful to Prof Batterham for allowing this .
It’s a long day but finally I can eat and rest ……. the support from:Twitter was amazing and amazing mate Beth Kelly a DSN ( not mine) ￼checked I was ok whilst on the floor and all over the weekend.
So changes ahead a new positive helpful team. No bariatric stigma . No battles . More ‘let’s see what we can do to help ‘
This is how all teams could work with palliative care patients, break down the attitude and work far more compassionately . That district nursing even without DN qualifications is of high calibre and compassionate. Nurses in these community wound care jobs being educated about diabetes neuropathy awareness of numbness and soreness . However coming into a palliative care patients home with confidence not fumbling over which dressing goes where and the patient has to repeatedly teach the nurse or the HCA teaches the RN! It’s a serious issue and it’s not being precious about one area it’s national in all areas of nursing due to cuts in service investment & training . I’m here right now needing good wound care nurses ……. a QN ? I’ll continue to wish that we had one……..
Meanwhile I discover on Saturday morning my shopping was defrosted and ruined it hadn’t been put away .
New week ……
I’ve got ideas we really need to talk about this – a fabulous bariatric physician to run a conference on palliative care and clinical needs. He says yes good idea ……The respiratory professor and consultant respiratory nurse have said yes we need to find sponsors and funders….
Just saw Partha’s tweet that UK T2DM HbA1c audit average is 7.5% . One thing I’ve got that’s hopeful – that was my last result.
My new go fund me page …… thank you very much if you can help …….xx