Hospital bed

When I first came out of hospital, I first went into a hospital bed which was downstairs, it was downstairs from when I came out of hospital December 14th 2012, until at least a year.
There was no way of me getting up the stairs not until my stair lift, which took along time.
When eventually I could get upstairs, I stayed in my hospital bed, as my own bed at the time was to flat and gave me such a back ache, I was waking Scott all the time to be moved, as the hospital bed had a control to either lift feet lift back and feet and can go up and down.
After about 8 months, the physio Louise said that maybe I can try a bed lift, which would go on my own bed, but would not interfere with Scott, I would be able to go up and down without Scott, which I agreed to and it was great, so I went into my own bed, at first it was strange and I had to have pad things under my heels, as they got sore and pillows under my knees.
I eventually got use to it and had nothing extra, it was great, I was next to my husband again.
I have had 3 bed lifts now, the first one stopped working, the second one got a whole and did not let me have any control, it went up and down on its own, I not had any problems getting them, I just text Louise and she passes on to my OT Katie an a few days later it arrives.
Since I been in my own bed, I use to have my hospital bed weekends, but I now I stay in my own bed.

2 weeks after accident.

After I had my accident, which left my face a mess, two weeks later my face looked like my old self, here is a photo to show you how quick you can heal.

I look so much better, did have a few stitches on my lip, but now the stitches are out they came on the Monday after my accident 7 days.
The stitches in my mouth are dissolvable , its nice now because I can brush my teeth now, I did do my mouth with warm salted water and mouth wash, I did this after a few days, my mouth was very painful, it took about a week and a half to actually brush my teeth.
I look  totally different now.

No contol

I think my mouth has nerve damage, as I cant cough and my mouth is always on the go, I don't seem to have any control of what my mouth does, like coughing getting rid of any flem.
My tongue feels different, its mostly stiff, even when in my mouth, it sometimes wont relax at all.
I find when I have been crying, it gets all gluppy and I cant get rid of if, my mouth fills up and I cant spit, just have to try with my tissue.
How to explain my mouth, is it feels like I been sucking a sweet for ages.
It has got a lot better though, my mouth can blow out now and suck a straw and I can puff my cheeks out now, say my S's.
All this is new, they are things I could not do and since I have had my carer, I have been able to put on my own lipstick, I have no control over my emotions though, I might laugh for no reason and cry for no reason, it just happens I cant help it, I have no control at all it just happens.

Speeh/Mouth picec

At first when I had my stroke, a few months after, I had speech therapy, and they use to come round to my home, to check my speech and my swallow, at the beginning  I could not eat or drink and when I did eat my diet had be a soft diet and I found I could not eat much, like a few teaspoons of yogurt, that would be enough, but gradually got more and more.
I had to do a lot of speech exercises, which they would leave for me to do to improve my speech.
When it came to the time when I could almost eat anything, I had to have my food cut up unless it small enough and soft, it was nice as I could eat and drink anything, although my drinks needed 2 thickener, it took a long time for  me to have normal drinks, which I now do.
It took me a long time to get a lot of my sounds, even now I have problems, sometimes you can understand me sometimes its very hard, you need to be a good lip reader and get use to me.
As time went on my speech therapist said that she thought a Pallet lift would help, but unfortunately it had to be made privately, so we went ahead and got in touch with Mulbury practise for Dental 
Health and they agreed to make it, I had to go there for a fitting, at the time it felt ok, but I went to use it, it made me gag and I did not like it, what a waste of £500, it did work for opening my air ways
, but it not good for me.

Carers

When I had my stroke at beginning, everyone kept on saying about having carers come in, but both my husband and I thought better of it, we would be restricted to time and I did not want just anyone looking after me, I was a carer and I know how hard that is for the family.
So my husband with help from the girls, decided to do it them selves, which was hard but that's another story.
One day about 6 and without warning, there was a carer at the door, after I had all my needs for the day, asking if she could come in and see me, well my husband said "she has had everything done" also I had not even had a care plan done by any company, which we found quite strange, this woman had not known anything about me or what my needs were, so scott sent her away.
The next day I had a manager and the woman knock on the door for an easement, so my husband let them in, what a mistake, from the manager I got spoken to like I was stupid, I was in my wheelchair and he bent down to talk to me, it was as if he was talking to a baby, my husband was disgusted and asked them to leave, that certainly made our minds at this point.
I asked my friend Carol to help, so she does 16 hours a week and we get on well and its someone I now and everyone else knows.
Having Scott and Carol has worked out well, she takes me on a Wednesday to either to see my mum or we go shopping, as she has a 5 hour slot.

Invisabe

I do sometimes feel like I am not here, as I do get people talking to my husband and ignoring me, a good way to explain this is, my husband has to always remind my son to say hello or goodbye and I have had a manager of Asda walk straight past me and talk to my husband," HELLO" I  am here, that's what I feel like saying, most family and friends are good, but it does so annoy me, I'm far from deaf and have got my own mind, I know its hard for me to communicate, but if people could just take the time, they would understand me.
If we have any sort of meeting, my husband normally says "don't forget Debi is here" and they do listen, it just worries me that if my husband did not say I would be ignored.
 I do feel very lonely if this happens, because I'm so here, but its as if  I am invisible, non existent, vanished.
Please take that extra time to either listen or to at least acknowledge me, I need just a bit longer. 

More about what I went through

I did not only have a stroke 3 years ago, in 2007 I lost my dad to cancer and 6 weeks later to the day I lost my brother, his organs all failed he was a drinker and after my dad passed he unfortunately drunk to much.
When it came to 2009 I had been playing on the Wii boxing and when I went to bed that night I had a muscle pain under my arm, so with my left hand I felt my right breast and under my arm and there it was a lump in my right breast, it would  really did not seem much so I did not bother scott till the next day when I told him that I had a lump and thought it was nothing, but he said make an appointment with doctor and see what he says.
So I made that appointment, I really thought it was nothing, it was so small and I was not sure if it was even there, I felt a  bit of a nuisance really.
I went to the doctor, he
 was not sure, so he sent me to the hospital at Epping to be tested, well I was examined had a Mammogram and
a scan an biopsy, unfortunately I did have breast cancer in my right breast, but having chemo would hopefully shrink it, not once did anyone mention I could loose my breast.
I wish they did have there consultations in a different place to where you see the cancer nurse, crying I and my partner came of the doctors office, not only to face the waiting area, we had to walk all the way to the end of the corridor to see the cancer nurse, it was awful.
We both felt so awful and scared about the whole situation.
I started chemo, I use to have to go every 3rd week and had a lot of problems with them be able to find a vein, so they put me down to have a line, which was done quickly from my neck area, with a long tube so they could attach the chemo drip, if n ever hurt a bit or the chemo.
I saw a doctor, which was a oncologist regularly or if I had any problems. This went on for a year, but I did have to go radio therapy as well when chemo was finished, I had to go all the way to near Enfield for that each week and to see my proper doctor, he was very nice, before I could have radio therapy, I had to have dot tattoos put on my chest for measurement, I had my friend Libby with me, we did laugh. After everything, I had to have another drug, which was given to breast cancer patients, cant remember name. When I first had it was fine, but the second time was awful, I was freezing and had flu like symptoms, so they put in before hand a antihistamine, which made all the difference.
All while this was happening I was married on the 12 June 09, it was the best day of my life, and the weather was so nice.
It was like a void in my life when every was finished, I had to have breast cancer drug for 18 weeks every 3 weeks,  did not know what to do, so to keep me busy I got a few private jobs while waiting for my mastectomy, which was a huge shock to me, as I had an appointment at Epping hospital to see the consultant, and it was a routine appointment, well that's what I thought, so I went alone, to be told I would loose my right breast, I was in a terrible state and on my own, it was awful, having no one with me made it 100 times worse, I was in shock, as before there was no mention of me loosing my breast. All my friends and family was so supportive I did tell everyone that I wanted to be treated as normal and not wrapped up in cotton wool and decided to have all my hair shaved off, in stead of it coming out bit by bit I thought  that would make me look very ill and I did not want that.
I chose to leave my head bald, no wig or scarf, as I wanted to be me and if I did wear something it would not be me, all my friends and family agreed with me and said my bald head was nice and suited me.

My accident

Monday 26th October, as I have many times before, because the weather was fine I drove myself to my computer club at Bush Fair, which is not far from where I live, after club I did some shopping on my own and experienced my first problem, a car was parked across the disabled slop, so a nice woman who I know from Martins the sweet shop helped me, she kindly asked the woman in the car to move to make way for me.
When I was nearly home, I dropped my tissue, went to pick it up, so took my feet off the foot plate and as I always do forgot to turn my wheelchair off, on the way up my forearm hit my control turned the wheelchair turned, my right foot got caught under the foot plate and twisted and then I got thrown into the road hitting the curb on the way down, a nice lady came out of her house opposite, as she saw me fall out of my wheelchair, then there as a lot of people, I got one of them to give me my phone so they could ring scott my husband, an ambulance had been rang, but they took about 40 minutes to come, meanwhile I was still laying on the road, what I did not like an was getting me confused, was everyone was talking to me at the same time, it was not till scott came an told them that I have problems with communication because 3 years ago I had a pons stroke and that I had Locked in syndrome, so they all shut up, it was not till the ambulance came did they say just concentrate on our words no one else, my face was all smashed up needed stitches I had a broken right foot knee problems, I was very lucky I never broke no teeth, which I was very surprised about, when the ambulance got me to the hospital, Princess Alexander, it was very busy an I had to wait ages, the ambulance driver took all my details from scott when he got there, I was in a lot of pain and terrified, I got to hospital about 2 30, had ECG xray and face stitched, when they tied getting me up, at first I could not manage it, my knee an foot was so painful, then I had to try an get in the car, even with scott and my daughter helping it was a nightmare.
When I got home it was a bit easier, as scott went in and got my rotary stand, which made it a lot easier to get out the car into manual wheelchair into my chair in the house, to help scott out, my daughter Page stayed the night.

phsiotherpy

When I was in hospital it took a long time for me even be able to even move my hands, if I did move a finger it was like a break through moment.
I did phsio every day, they even strapped me to a board, so I could stand, as I could not weight bare sit up alone turn on my own,  I was hoisted out of bed had a support wheelchair at first, but then they gave me a normal one as could hold my core.
When I came home although I wa,s still using a hoist, I was getting much better.
It was not till about March, I began to have phsio at home twice a week, by the end of it which was about 10 months, I was lifting arms and legs and able to put my own glasses on, it may not seem much, but it meant a lot to me and my family considering I only had eye movement.
Then I went to Latton Bush twice a week and they had me doing a lot, stretching balancing, as they got me up on my feet with a rotary stand, which was very weird a strange feeling, they would use that for transferring, at first I went from wheelchair to board then bed.
Because I was doing so well, one day when I got there Louise said lets try doing some walking in the bars, no one thought I could go very far, but I walked all the way up the bars and back, which was about 20ft each way.
Louise made me walk with walker every time I went and then she got me walking up and down the stairs, which was a block of 4, she was always very pleased with me, I did push myself though.
Then it came to a time where I could do more practical things at home, although it was a few years, so we just keep in touch by text to see how things are going.

Thoughts

I have so many thoughts, as I don't talk I have a lot of thoughts and most of them bad.
I always think something bad going to happen and when I do talk what I'm thinking it wrong and it causes problems, maybe I should shut up and say nothing, my husband says I'm not rash, but I'm. only saying my thoughts as I have always done.
At least I don't experience bad dreams anymore, just have trouble sleeping, my head is full of stuff, but by now   I should not feel this way.
I do think a lot my speaking voice not good and I cant get things out quick enough, so I'm left alone with my thoughts.

Lonelyness

I know I should not feel like this, but at times I do feel lonely.
When I do things I don't like to be watched because of my uncontrollable laughing, but when it comes to knowing my husband is in the house, whether it be him playing football computer poker or him laying down upstairs, I do feel lonely, I know I shouldn't but I do, It makes me feel as if he don't want to be with me, I sort of get a butterfly feeling, I cant help it, I know he does a lot but I suppose that's the way it got to be, I sometimes want to go to bed later, but it makes me feel guilty, I even sometimes go to bed earlier because of this, Before I had stroke I was always up late, I don't change in that way, although when I go to bed because of my medication I do sleep, I just think it would be nice to stay up and watch a film or something on TV.

Mobility

In August I got my Mobility car, a Ford cmax, yes we did loose 250 a week which is my Highest rate Mobility, but all we have to o is put fuel in, everything else is taken care of, we even got breakdown cover, although loosing 250 has been very hard. At least now I can go out an about, we use my manual wheelchair, my electric one to heavy and don't fold down, at least I have not got to stay cooped up in the house. We first went to Citron, but they was no help, just left us on a number of occasions left us to get on with it, although we did not have a clue, we had never got a Mobility car before and I could not get in any of them, when we to Ford it was so different, we had a specialised Motability salesman and he was so helpful I so recommend them, it made it like a breeze. 

feeings.

I use to be so socialised, but now I hate parties I think is because I cant dance interact with people quickly and cant just walk about, It upsets me to see people enjoying themselves, which I know is wrong, but I refuse to say I am disabled, I have not yet excepted it, I still think I can just get up, walk talk and run around, I use to love getting in my car and visiting my friends. At the moment I feel like its ground hog day, I know I should do more, but I just don't feel like it, I sometimes feel like my life is on hold, everyone including my husband tries and ask me all the time if I want to do things, but I just say no all the time, everything seems so much effort these days, although I was a good cook, but when I think about it because its such a effort, that one thing I don't do it no more, which is silly because I use to love and experiment with food, add this add that I was not afraid of food, which is a shame because I liked so much, horses singing going out, anything really. Things are not even the same with my Grand children any more, although I love them very much, I cant do the things I use to. I really miss playing with them and baby sitting them, we do have them, but only for a short while, its not the same and I have a Grand daughter now nearly a year, its not the same with my Grandsons either, although I did go with Scott to see our Grandson Bobby play football, his a goalie, hi very good his 9 and plays for Harlow, he does training night on a Tuesday.

My friend Carol.

Carol has made such a difference in my life, that's my PA carer, she comes 16 hours a week which consists of Monday morning 2 hours Monday eve 1 hour Tuesday 1 hour morning and evening, Wednesday 5 hours, we either visit my mum or go up the town, Thursday 1 hour morning and evening and Friday 2 morning 1 in the evening, we get on really well and she encourages me.

A single person.

If only when you come out of hospital, there was one person to explain everything, considering how much trouble we had, It would be so much easier instead of tooing and throwing and having to explain to everyone.

The things I dont like about stroke

The things I don't like is not being able to a proper mum and wife, the girls don't tell me much anymore and I use to be so close to my son Tyla, but not now, cant hold him I he got problems, I really don't feel good about not being intimate with my husband, even giving him a proper cuddle, it would be nice to just be able to just hold hands get up and walk out, its even hard not being able to walk the dog, I think the worst thing is not being able to talk, I think I could cope with everything else.

No hunger or thirst pains.

I don't get hungry or thirsty, I just know I have to and I have to be reminded at all times, I am not like other people I don't get hunger pains, I do hope that changes.

Progress.

My progress has been very good, although it has significantly slowed down, the first few years were so quick, but now nothing seems to have change, they all say that though, I just hope that after 10 years things are much better.

Memeriors.

It very strange, although I have all my memories, I do forget that I may have watched things on TV, my husband is always saying, oh no we seen this, but I don't remember, he says my brain injury makes me different, I know one thing I have no control of my emotions, I cry and laugh which I have no control over, I tend to laugh if I do something new.

How lucky I am.

When I first had my stroke I only had eye movement, although I was in hospital for 10 weeks, I have since found out how lucky I am. A lady on my stroke survivors, which I found on facebook, was in hospital for 6 years, I am so lucky with the determination sweat and hard work with physiotherapist and help from my speech therapist I can talk more walk with the help of my frame shower myself an use the toilet as have bowl sensation now, just waiting to have bladder sensation now, it is frustrating though when you know whats in your head what you want to say, but it wont come out properly, things must be so hard for that lady.

Not good care.

Let me tell you about the places I stayed, one was Admial Nelson house, it was awful, the buzzer system well it was non excitant,  they had one person that had a alarm so if they was busy you could wait ages, not everyone closed your curtains when changing, if you at night if you did not fit into their routine, then you would wait, they never had a proper coordinator, so you would find yourself doing nothing and when they did do something you would not know as on the notice board, they had the activities up to high, I did not enjoy my time there. And the second place I went to Jubilee Lodge was as bad, you could wait up to an hour before someone came, when you get there they should do your trips, I have missed a lot of trips because by the time they come round they might be full up and again only some shut the curtains when being changed, I never felt safe, was left alone a lot with walker and one day my bathroom floor was soaking and I needed the toilet, when the carer came which was along time, it did not seem to bother her, but it was wet under my feet and walker. 

Resbite.

When I got a new social worker, she told me and my husband we could be in control of my own restbite, which we did not know, they would award me the money and send it to Essex pass, so I took control of my restbite, the first place I went was Jubilee Lodge Chigwell, which is like a holiday home for disabled, but I found them to have a lot of problems, so next time I will go on a family holiday.

Coming out of Hospital.

Forgot to say, we had so much trouble with pads, to the point that my husband had to go to Latton Bush to get pads himself, as one day I had a bad stomach and used 80 odd pads, how can they justify that, they don't know how bad someone is going to be and they only allow 4, ridicules, things only got better, one when Carol started and when I got a new social worker. 

My first Social worker.

My social worker even tried to sort out my PA carer and did that all wrong, he was meant to sort it out with Essex pass but a form went missing, he even rang my husband saying has Carol started now, but we new nothing about it, Essex pass or social services had told us, anyway when Carol did start it was great we have a good bond as she was a school friend to and only lives down the bottom of my road.

Lost in the system.

• That's when it all started, first we were lost in social services,they had no recollection of us we lost in their system, and finally got a social worker he was useless, each time he was asked a question he would say he would find out but never did, the only time we would speak to him it would just be going over the same thing. Well one time he booked me in for restbite, told us on the Friday and we were due to go on the Monday, so had no chance to check the place out, we did have something going on with the council, which could not be changed, so had to go. the bus turned up, no proper belts for me and to go all the way to Chelmsford with the wrong straps and we got there I was put in a place full of old dementure patients, not that they bother me i use to be a carer so was use to that, the point was i was given the wrong restbite, not suitable for me, but no choice had to stay for two weeks, they was good at care but nothing else, they had their routine, sod everyone else, waited 45 minutes one night, just for a drink.

Coming home.

sorry I changed my font that's better.Iwas in hospital for 10 weeks an hated every minute of it, I did not things could be worse until I got home. when I came home the first thing was the ambulance men themselves, I use to have to be hoisted, so when I came on a bed that would not fit through my front door, they proceeded to bring me in carrying me on a sheet an just leave me sat on a chair, an when my husband tried to put me to bed the sling which is used for the hoist, was to small, we did our best but was not good, when my husband rang the place about it they did not know what we were talking about but said we would have to wait for one to be delivered so I spent along time in my hospital bed which at the time down stairs.

Wrongly accused.

At first I had a tube up my nose into my stomach and I pulled it out once, but I was accused of pulling it out twice, but a nurse when changing my wet nightie, had pulled it out but I was being blamed, my family went made as I had a sheet with letters on for communication an typed it out, none of the staff ever ask me to use it, they would have known what I wanted if they did, the only ones that did was the ones who did it for me which were the physiotherapists it was left on my table where I could not reach.

Peg tube and Hallucinations.

I had a peg tube as I could not eat and drink and medication was done by peg tube to, I was meant to have water before and after tablets but not everyone kept to that. I really did have some really bad dreams in there but not at home, I used to see people I new to, I thought that my daughter sian was visiting a neighbour that was in there, I saw my friend carl and my brother and he died 2007, it was very strange, I thought I was in a different building and the staff I new some of them to.

More about Hospital.

when  I eventfully got to the stroke ward they were using my right arm for bloods and blood pressure when on more than one occasion my family had told them I was not allowed anything on my right arm as I had had breast cancer an lost right breast and was not have treatment on that side but they still did, you have got remember this is what I was told I was completely out of it. 

Not knowing.

first of all I went to harlow hospital, in which at first they did not know what was wrong with me, when they finally found out I had locked in syndrome they left me  17 hours before giving me pain relief and even then it as left off the drip, only when my husband came back to the hospital he raised the alarm that my pain killer was not on, I did have many seizures and my family were told I as going to die.  

hi my name is debi an I had a really bad stroke 3 years ago, 22 October 2012, an I had a really bad experience let me tell you.