Welcome to any new followers and readers.

I want to welcome all the new likers to our Blog.

We are slightly dysfunctional but i think that works for us. 

my long suffering husband J and i have been together for 17 years so far.

we have three children, J, O and F. They are currently 15, 12 and 6. I am am also a part time specialist nurse for people that are tube fed. .

All this is in addition to all the nursing experience that i get at home while juggling the children. all three children have additional needs that require specialist care and are the reason that i eventually took the brave step into nursing. 

It was while changing a feeding tube on the floor in a restaurant after it has been pulled out that i realised that i wasn't all that squeamish actually.

We spend a lot of home time doing medical care, visiting hospitals and trying to stay out of them.

We have a family condition called Ehlers Danlos syndrome type 3 that affects us all in our joints.This is myself as well as the children. This ranges from joint pain to full on joint dislocations, dysphagia, gut problems etc.

 All three children have needed fundoplication surgery for severe gastroesophageal reflux. All three have been tube fed for significant amounts of time. J has his feeding tube for 13 years and it was just removed a couple of months ago O was fed for 10 years and her tube was removed 2 years ago now. J also has ADHD and Anxiety, O has a habit of fainting and has nose bleed but its F that brought us here. 

F is our little mystery. He has a lot of different issues but no over all name for his problems. He has a cyst that has moved his entire left temporal lobe in his brain, he has hypotonia, he has hyper mobility, he has severe reflux that hasn't been resolved by the fundoplication surgery as his has herniated back into his oesophagus, he has gut dysmotility problems, he is jejunostomy fed, he has a mild global development delay, He has some kind of MAST cell activation disorder, He just has allergic reactions to anything. He has a deletion on chromosome 14q21.2, he has small intestinal bacterial overgrowth and other little quirks.

we or especially i am also a huge Geek. A title worn with much pride. I love doctor who, Harry potter, elementary, red dwarf and also Sherlock. 

I try very hard to pass this onto my children much to their embarrassment sometimes. 

Although F is proving to be a Harry Potter buff even at the age of 6. It's makes me so proud when he jumps about shouting spells. He is becoming more and more obsessed, plays it at school with his friends. loves to dress up and wants to go to the harry potter studios for every birthday. 

The best thing is that so far he only thinks there are two books and films even though he has been to the studios, his delay means he hasn't spoiler-ed himself. it means that as he grows up he will be able to discover more and more too just like i did. 

i hope that i will post regularly on here for you all to read but feel free to join in, comment and let us know where you are from, ask questioned. Share you favorite Geeky quotes, pictures stories. 

thank you reading x

Are you tired?

are you tired?

So so tired.

If the powers to be let us sleep tonight I will never complain about being tired again when I'm not really.

Dog tired, shattered, knackered, which ever term you use.

We all use the term, all the time and I'm sure we think we are tired but actually you can still function, everything still gets done. You can manage to go out, socialise, hold a conversation.

You could carry on like normal but with the odd yawn or achy feet.

Now if you have have ever had a sick child then you will have at some point been really truly tired. The days after you have been kept up all night or seen every hour even if you have slept are so hard to get through. If you have to give regularly timed medications that can't be missed not even that 4 am one that no one else is awake for.

The worry that you will go to sleep and something bad will happen, not a paranoid panic but a reality for many parents meaning that any sleep that they do get is poor and very disturbed.

Then you will have been tired, so tired that you forget what day it is, can't hold a conversation because it takes too much effort.

Go out in odd shoes because you are working on an autopilot that's colour blind or just doesn't care any more.

You have your t-shirt on inside out but don't care or you feel sick because you are so tired.

It does strange things to you. Makes you cry at anything or shout when you wouldn't normally.

Makes you eat all the celebrations, even the bounty's when you aren't even keen. You still eat them.

Sometimes it's your only meal as your body starts rejecting food as it all makes you feel sick.

Or your child can't eat but wants to do you can't eat in front of them but you can't leave them either so you go without until they are asleep.

I've seen many a parent passing out in the hospital because of this. Your body isn't designed to starve but you do it because you have to.

We know we are failing, we know that we need to make phone calls, need to fill forms in, need to cook, clean, buy things etc we just can't do anything about it in the moment and when this is pointed out we will get very defensive and upset...(sorry mum)

You feel like you are going mad because you can't remember anything or you sit down and lose 15 minutes staring into space.

It makes me forgetful, I have a degree and a post graduate in nursing and I forget the day, struggle to remember names or what I did the day before. It's an awful feeling.

i cry at the drop of a hat. i cried because cars moved out of the way for an ambulance. i cried even more when one didn't. i cried because my husband asked me if id sterilized the syringes (i hadn't ).

The bigger kids have been shouted at a little for not doing things asked or for being too loud and it isn't fair.

i find i go into my own little shell, i cant hold a conversation properly so tend to avoid the phone, luckily i have a couple of great friends that don't mind me talking crap or falling asleep while on the phone. they have been there and know what it is like.

it is hard and we need a little slack sometimes. partners don't say things like oh yes i was awake too. i mean you can if you were awake but if you woke up grunted and went back to sleep that doesn't really count and will just make me want to shout.

don't point out all the things i should have done and didn't do, i'm likely to cry, swear or put the phone down. a nice thank you for managing what i did do would be great.

i have had a little more sleep the last couple of nights and the sicky feeling had gone and i could finally sit down and write this because i tried the other day and didn't save it and it deleted and i cried.

The decline of District Nursing,

Well..... sorry it has been a while.. A long long while.

I have no real excuse aside from busy life, although work has been hectic.

As some know i am a community nurse part time around my children's medical care. A job i have always loved, it was my goal all through my training to get out into community and make a difference, for 3 glorious years until....

To start district nursing is changing, we are getting patients discharged who until recently would have stayed in hospital, the skills that are needed are increasing as we do more and more to keep patients at home to avoid admissions. Chest drains, chemotherapy, flushing picc lines and negative pressure dressings are a few of our latest skills

Currently community nursing in my area is undergoing a lot of changes. These are not always for the better. They have changed from locality based to GP aligned. This means we have to drive further which takes longer, great when they have just cut the mileage money that we would get for using our own cars. They have changed all of the shift patterns and now no one knows what anyone else is doing. We now have long days and short days, early shift and then shifts all the way up to 10pm. Gone are the days when district nursing was the better job to fit around your family. Some nurses have been working 3 weekends a month for months on end. The then decided to move half the nurses to a different base and move a whole host of new nurses in, then changed all the little teams about so we all feel like we have been on the Smiler at Alton towers.

Then when we weren't confused enough they gave everyone a laptop and decided that every patient on the case load needed reassessment, this takes 2 hours minimum and we have nearly 2000 patients.

It has been leaving us nurses on the ground demoralized, unappreciated, ignored, over worked, underpaid and sometimes with no lunch/breaks because you know that if you don't go to the extra visits then those patients wont get seen that day. My conscience will not let me enjoy lunch knowing that people who are sick wont get their visit so i choose the work.

i wouldn't mind but its not even been good for my diet because i end up stress eating chocolate and whatever i can find in the car. even those out of date voice tablets got eaten!!

Then the whole paper light/paper free thing comes in. This should be labelled

Won't have time to do the paperwork on the computer so will have to do it at home.

I am getting home from a long shift and then having to do 2 hours of UNPAID work on the laptop catching up with outcomes and assessments that cant wait.  All to protect my PIN and to stop the niggling messages from management to ensure my outcomes are up to date.

Work suddenly became a chore when it hadn't before, morale was so low, we were and still are losing good experienced nurses in droves, 8 will be leaving in the next month, 8 good hardworking nurses who have had enough, some are going back to hospitals because it is now the easier option for families.
In a meeting when they knew 6 were leaving, we had raised concerns about being short staffed and were told that they would only be replacing 1 nurse but don't worry they have a new manager.

I hope that she comes with a band 5 uniform and she can go out on visits.

We have lots of management, at the moment they don't seem to be managing anyone, there is no support, all concerns are answered with " i can see the concern but" they are just patching the leaks and sorting out the complaints from irate patients and family members about how their dear old gran didn't get a visit today or this week. Then we fall into the cycle of seeing the complainers to stop the complaints coming in and the lovely sweet quiet patients who need visits but wont complain miss out.
Can you feel my frustration yet, i hide in my car so that i avoid swearing at any manager who asks me if i am ok.

We are having to cancel anything none essential and then still people aren't getting the visits that are needed.

 so for the sake of my sanity i had to look else where.  

This isn't an easy decision, i love my job, Well i love 90% of it.
sure there are things i really wont miss, like seeing 17 patients a day and feeling like i haven't given everyone of them the time they deserve or getting abuse from patients or relatives for things i have no control over.
To be honest ill be very happy not to have to put female catheters in anymore. I am far too polite to go rummaging around lady bits. that goes for pessary rings too and probably bowel care. If you don't know what that is don't google. just have a think and that's probably correct.

However There is a lot that i will miss.

Some of the patients  are amazing, they are tough and brave. They are so grateful for the care that they get. i feel humble being able to help them on a daily basis. Seeing them recover is a treat.

Being involved with palliative care has always been an honor. Knowing that someone has been able to die where they want to and peaceful is a great feeling of achievement.

Knowing that i have helped a family to grieve for their loved one and being able to support them through this journey. Helping them remember the happy memories that they have rather that just remembering the end.  This is a large part of my job. something that i feel i do well and get positive feedback about and yet i have to go and its heartbreaking that all the skills that i have learnt over the years will no longer be going towards our NHS.

What i will miss the most is my little team, from the top to the bottom these nurses have been amazing, each one having there own strengths and willing to teach and nurture others, our immediate boss, who herself was under supported has been great in trying to motivate the team. Sadly she is also leaving. These ladies and one man will be always remembered with fond memories and lots of laughter, from their often wicked or rude sense of humor.

I don't like change at the best of times so it is a big deal that in a months time i wil no longer be a community staff nurse, i am moving to a Global Enteral feeding company to join their team as a specialist enteral feeding nurse. This job is my dream job, its the one i wanted to do even before i thought of doing my nurse training.It is still in the community and i will still have lots of patient contact.

I also think that i have a unique background that will help me in this role. I have been on the other side, I have been the parent whose child has just been given a feeding tube and I've needed support and training from the very same specialist nurses who i will be working with. I have needed them to go into school to to train F's teachers. i understand the feeling of shock and fear that you get when this huge responsibility is thrust upon you.

All in all a positive move but there will always be that part of me that is sad that my district nursing days are going to be behind me. I have definitely grown as a nurse here and i am leaving a better person for it. Its just feels like it will only get worse and i worry for what the future of district is going to be.

Research seems to be agreeing, pressure-on-district-nursing-services-is-leaving-staff-broken