I strive for a ‘normal’ life, which means sometimes I hide away when at my worst. But is that a true reflection of life impacted by my disability?
Many of you will know I have help, a team of amazing carers that facilitate my parenting, goals and dream. They are there to protect me, my son, my health and our welfare, they do a bloody good job to.
I can’t count the amount of times my home care team have saved my life; the stress they are under sometimes and the literal crap they deal with. My support workers/home care team have seen me at my best, my worst and everything in between. I’m sometimes asked, well what do they do? Why are they there? People sometimes question ‘but you manage fine?’ Sometimes I even ask that question myself.
The last 10 days have been evidence to needing my team. Managing ‘fine’ for a few weeks I question what my life would be like without the intrusion of being with another adult 24/7.
Because it is intrusive, every dump you take, every move you make, someone is watching you.
Under our 8 camera CCTV system or in the same room, someone is always there watching, noting and judging my every move.
Of course that has its lows, and I mean severe depression lows. When I first had a ‘package of care’ placed a few years ago (well before H was born) I would purposely hide and cancel calls to be on my own. Needing help to shower has got to be one of the hardest things I’ve ever dealt with mentally and emotionally. But it also has its Highs, i’m never without someone to chat to, bake with, parent with and joke with. Accepting, like fully accepting, another adult into your family, marriage and home for large amounts of time isn’t something that’s taken on lightly, but when it comes to the question of risking my and my sons life without, the answer is definitely not. All it takes is a week like this last one to remind me
that, I need them in my life if I want to survive. Sometimes, I don’t even know I need them, until a few days later, or until I wake up on the floor or in resus.
10 days ago I was in absolute agony with my teeth, I hadn’t slept for more than 1 hour for about 3 days. I felt rotten, couldn’t get out of bed, feeling hot and cold, nausea, headache, the lot. It was a weekend, so limited on what help was available.
I attended an out of area emergency dentist on the Sunday after ringing 111. They told me I had to wait for my hospital referral to take all my teeth out, and there was nothing else they could do. Devastated we returned home, and me to bed, when we returned home that evening after the all day trip.
I tossed and turned in bed that night, crying while awake and whimpering in my sleep.
I was confused, asking the same questions on repeat and struggled to open my eyes.
My husband woke me up just after midnight saying he had had enough. He was taking me to A&E because they HAD to do something with the amount of pain I was in. ‘Its not right’ he fumed.
I questioned why, confused, laying their in a puddle of sweat, eyes half closed, ice pack over head.
‘I know they won’t do anything, and I’m too sick to go’ I begged in my confused state.
Arriving at A&E my husband (also power of attorney) checked me in. I couldn’t relay my details or speak in any form of sentence. The texts my loved ones received from me were incoherent babbles at best. After checking me in, my husband was made to leave due to covid guidelines. So he returned home with our sleeping boy.
I don’t remember anything of the trip and as he wasn’t there; my husband is unable to fill me in on this part. To construct this post i’m relying on documented information available, and what other people have told me in the last couple of days.
I definitely didn’t have bloods taken, and there’s no way I would have been able to produce a sample of urine independently.
The next thing, my husband received a telephone call from Cleveland Fire Brigade.
‘Hello, is that John? Yes... We have found your wife! But my wife is in hospital? No, she’s at Coulby Newham Fire Station. Shit, Right, I’m on my way, thank you!
So John turned up, and sure enough there I was, surrounded by fire fighters and covered in foil sat in my wheelchair. 4 miles from where he had dropped me off approximately 6 hours ago at A&E James Cook.
She seems confused John, someone said, she’s not the only one! Replied John.
The ambulance arrived to check me over and John explains I had been to a&e. Someone then tells him that I was discharged and told to see a dentist.
And this is the crazy thing, there I was, 4 miles away from where I had been left, but only 2 minute walk from my dentist.
We’ve all taken the opinion that, I was doing as I was told, and went to see my dentist.
My husband managed to get me an appointment that lunch time at my dentist. But on the way home, they rang and we went straight in. My dental referral for Newcastle had bounced back, again. On seeing my state he apologised and said that he would have to start extracting my teeth himself. 7 in total over 2 sessions, on Monday and Wednesday. After each session, as it was the only time I was relativity in control of my pain I embarked on clothes, activities for H and food shopping.
I bought H an IPad, Tupperware, clothing for me in 2 sizes too big, a whole display box of nuts and various other random items.
Again - I remember non of this - the ipad was planned for Christmas.
Apparently I seemed dazed, confused, talked very fast and didn’t make much sense a lot of the time to those that know me.
I would say that I ate a full fry up for breakfast - which sounds normal right? Not to someone in gastro failure who is tube fed... so my carers knew something was wrong.
But when the local anaesthetic wore off, I lay in bed, Ice pack to face, dripping wet, shaking, eyes rolling, peg feed on and medication every 4 hours religiously.
Wow I was ill, looking at the texts I sent, listening to what people observed and reviewing CCTV Footage I now question how close I was to sepsis.
Someone made a connection - INFECTION!
Checked my PEG, a lump under the skin.
Bowels - loose, confusion, the sting urinating, the dripping wet.
A phone call with a GP and I began a course of antibiotics via tube.
It took 3-4 days before I became lucid. Before I could write my own texts and social media posts. Before I could retain information.
I listened in horror to what had happened in the last week or two, i had even visited family, bought H an iPad, bought myself a wardrobe full of clothes the wrong size, hired a new member of staff, taken a 4 mile roll in my electric wheelchair in the smallest hours. Not again - why do infections do this to me I question with my head in my hands.
I’m piecing together the information like I’m being fed individual jigsaw pieces, slowly learning about what happened over the 2 weeks that I was ‘missing’
I literally could of died.
I could have been run over, advanced to sepsis or anything.
Thanks to the hard work of my support workers I live to see another day.
And hopefully, many many more!
(The 2 safeguarding queries were investigated, the doctor and nurse apparently didn’t see a problem with releasing me at 5-6am in the morning alone; in my wheelchair because I apparently had seemed to have capacity.)