Thursday, April 28

Wired up

Just back from the hospital being wired up.. im not sure how im gonna hide it up tonight but im going to salsa regardless.. I will just have to wear something baggy.
Its chinese for tea as my fellas bringing it home from work so today im getting the packing done and may take myself off out somewhere. I'm really looking forward to another long weekend.

I've been looking at places to go camping and have found the place i'd love to go first.. its so pretty, surrounded by woodland and a lake..
My mum keeps telling me to book up one of the salsa weekends now.. We havent been able to go before because of the kids but shes happy to move in here with them, so im thinking of booking the castle one i keep looking at longingly and surprising my fella nearer the time.. Its has a 4 poster and jacuzzis in each of the suites which i know he would enjoy... They all bring rum and carry on partying in the rooms, so its on that list of to do things and may come sooner than i expected.
The drs said this morning i can go to salsa as long as i dont overdue things tonight.. im so pleased this monitor is on, at least i can do some normalish stuff now.. if its gonna happen then its being recorded.. that in itself brings some comfort. Ive got the best specialist up there, the nurse confirmed this morning and she is confident she will sort out whatevers causing these.. Its not gonna be easy to to sleep tonight as i have wires hanging out everywhere...

Wednesday, April 27

Keep Pumping

My Dr just phoned to put my fella out of his misery, he went on and on about me speaking to the Dr about my next period, hes obviously worried so i did phone him. They are saying as hes read all my hospital records this morning that it is my heart stopping and not just down to blood pressure, that could trigger it but they think it could be the wiring to the heart as the records put it.. I can feel it missing beats and then going like the clappers,so im behaving myself til i get that monitor on tomorrow...
My diet seems to be helping as i haven't had any more seizures now for 9 days which is brilliant.. trouble is they need to sort out whatever's doing this, im helping myself with downsizing all the work i usually do and eating and drinking healthy.. I feel like my stomachs the turbulent sea most days as im having to drink so much water, they said it will pass and that once my body knows im going to keep drinking, it wont hold onto it so much, so i wont feel so full all the time like i do at the moment...Its hard to want to eat after you have drunk gallons of the stuff..Im not hungry at all
Today i am going to do my hair! I wanted to yesterday but if im honest i didnt feel too sharp and as im on my own here all day i have to be careful, so i sat down and didnt do it.. Ive had a few seizures where ive gone down really hard and cracked my head and body.. its taken 2 weeks for the bruises to start disappearing...I cant do photos looking like i did...
Im itching to get back riding and to salsa. I went on Thursday to see the guys and it was hard not being able to get up there and enjoy myself..I did have one dance with gerry and one with steve but wouldnt push my luck. Sharon and Steve agreed that i could go in with the beginners class as sharon's a nurse and can take care of me if i do hit the deck.. so it was a very easy layed back class.. I really enjoyed it.
Ive made Steve promise that no matter what happens if i go down again he will get my heart working, it does seem to restart itself at the moment which is great, but just in case the worst happens, i need to know he will do whats needed and not panic. Ryan said he just sat there holding me, crying shouting for an ambulance.. that's not whats needed, you have to think calm and if needed break a few ribs to get it going again, they taught me that when Brandon used to have apnea's, pain is the easiest way to get a response, short of having a defibrillator on hand... Dr bennett was lovely this morning and has told me if i get any problems today to ring the surgery straight away, he will come, as my fella has to catch a bus home.. They are saying to let this period come as normal, the monitor will tape whats happening and although it will lower the blood pressure again it should also make my heart pump faster.. they dont seem to be sure yet, whats happening just that the heart is slowing down and sometimes stopping.. Gives new meaning to being unpredictable.. Noone seems to know..
I prefer to think its blood pressure.. I can help that myself.. I dont want to go back into hospital so need to feel i can help myself here..Im doing something right as im feeling much better than i was.
Ive managed to gain 3 pounds in weight which my fellas pleased about, its probably all the lemon water im holding butI wont tell him that.. I got so sick of drs telling me im underweight as they couldnt get canula's in my arms,.. am i fuck! ive always been this way, its just everyone in those places are usually obese who have dodgy hearts.. Knowing my luck they will ask me to start smoking soon as its good for me...
Call me superstitous, but ive been carrying the little heart everywhere with me that Fay gave me just before she died.. Did she know?
She gave me a purse as she said it would help me financially, and inside was a hand carved pink crystal polished heart about the size of a 50p peice.. I keep looking at it wondering why she choose to give me that.....
Funny olde world isn't it............

Tuesday, April 26

Hot week

Its been a good couple of days, the weathers amazing so we have been entertaining in the garden and doing BBQs.. It was well needed.
Ive been taking it easy and day by day gaining some strength, im not nowhere near back yet to where i want to be, so am doing as im told for a change. My fellas panicking as im due on this week, hes not happy as he thinks it could pull me back down again, so wants me to go see a dr to get it stopped with some pills, im having the heart monitor fitted on Thursday for 5 days so if i end up in a heap again they will see whats happening, i think its a good time to come on as i know it will interfere with my blood pressure, so they need to see my bodies reaction to this..
You can't keep putting things off in life, if its gonna happen then it will..
Davids been such a gem from next door, hes been taking the boys with him all over the place which they have loved.. My fellas on a mission to burn down my house at the moment so i think secretly Davids keeping an eye out..lol We had him round for a BBQ and Firepit on Friday and my fella set fire to that, then last night when emptying the firepit he must have put hot ash in a box as lauren came through screaming fire... my god it was a bloody fire as well, the front drive was up in about 8 feet of flames, along with half of Davids shed! it was a biggy! he was hosing from his end, we were all like gnomes passing water from ours.. hes got gas canisters in there! after me last week and that last night my fellas getting pretty fast with his moving now..hehe
Im gonna have to paint the shed and the fence black now!
Its nice to have some kind of normality back here, the kids have gone back to school and my fellas at work, so ive been sitting here listening to music this morning pottering about, its lovely and quiet so im pretty peaceful. Ive got orders to get done today but then thats it.. housework is banned this week.. its my first week of being left alone so everyones a little apprehensive and helped to get the place sorted out..
I want to try and sort my hair out this morning, up til now i havent been able to, so its a long bath while i do it and the radio for the next hour for company..
Then I'll get the packing done.....
My fella took me to nanny and grandads new place on saturday, its right near anglia square but hidden.. all those years i lived on angel road i didnt know about this place. Its so beautiful, like a little communion set in an oasis. i fell in love with the place, it may be expensive but they have saved all their lives for this.. its well worth the money.
I told grandad to stop worrying about money, he should spend the lot now while they are alive and happy and he seemed to have listened! as soon as im well enough im doing photos there, its perfect for that, and the old dears are all looking forward to watching a photo shoot apparently....lol
I can get changed in nannies and enjoy the garden as i work.. Grandads developed a new lease of life up there, theres only 3 men and 40 women! he hes the hottie according to nanny.. they have a special key that takes them through an alley way straight into anglia square so when i go down now ill park there and use that.. Theres something really enchanting about secret passageways..lol

Thursday, April 21

Bright

Im feeling so much better this morning, my hands are warm, i actually feel like my energy's coming back! There's gotta be something in these raw vegetable drinks..Im drinking so much water at the moment and really starting to feel benefits i haven't felt before, I never did drink water, just bloody tea.Even that's changed now I do still drink some but its green tea with honey now, it costs me at least a tenner a week now in honey, even the kids are pinching the stuff...
Im growing so much stuff to eat here, its all still tiny but its coming on well, looking out there this morning i cannot help but smile, im really feeling glad to be alive today.
My fella has been totally brilliant with me, i made the mistake last night of staying up later than anyone here as i was talking to my mum online, i went through to get more water and must have shut the fridge hard as the next thing i knew was steve flying down the stairs looking totally panicked.. he said he heard a thump and thought id hit the deck again..... God if i make that sort of noise when i go down i must have been in trouble..lol
he has now from yesterday gone back to work to try and put back some kind of normality in our life.. he has been making me litres of lemon water to drink in the mornings before he goes to work bless, its like the roles reversed....... He came home last night and took me to wroxham for some chips! The drs are saying to put salt on my food at the moment and up my intake so i enjoyed eating them beside the river.. it was such a beautiful night..
Im aiming NOT to hit the deck anymore and am doing what i should have done 'a long time ago'.. it took something like last week to knock some sense into my head!
looking after that 'Ferrari'(lol..) and giving it the right fuel for a change... vitamins and iron that it doesn't seem to be able make by itself from my food... my coeliac stops me getting any nutrients from food but i can get them from fluids, so its vegetable smoothies and strange drinks in between meals.... Leading up to these attacks i was sick every day for over a month and they couldnt find out why, so that leading up with mums shocking news did tip everyone over the edge.. My heart is not damaged thankfully the hospital results are back in for that so its a big relief, its blood pressure that stopped it not a broken heart.....
Today my daughter has promised to help me with the cleaning (yet to believe it though) as i havent tackled this place in 10 days so im hoping to get 'some' done today and make some bread this afternoon.. im turning quite strange, like hugh from river cottage im wanting to make everything from scratch now and loving the results of growing my own and a simpler lifestyle... Id bloody love to be his next door neighbour... Now thats one place i would move to tomorrow....
Right time to crack on in 1st gear of course.. im not aiming for 5th just yet, just taking this at a slow pace now and seeing what the day unfolds......Id love to go to salsa tonight.. perhaps ill go and watch just to say hi to everyone...

Wednesday, April 20

Calmness

I managed to get through ok til my fella got home last night.. Im gaining confidence now.. Its 3 clear days this morning so im really pleased..
My fella has gone to work, Ryan has gone to college, lauren is at jades and callum and Brandon are going with david at 1.. so its a stay calm day and don't overdue it Jo... Its so beautiful out there so this afternoon im gonna aim for the garden and enjoy some sunshine..
Ive got packing to do this morning which if im honest is worrying me, im not allowed to drive until the monitor is on me and theres no way i can make the post office.. so im going to take one of the boys in the shed to watch me pack and ask david to drop it off for me. The girls at the post office know whats happened so will help if they can bless...
Ive had a cheese roll, porriage, glass of beetroot juice, a vegetable smoothie and 4 pints of lemoned water which is a bloody weird breakfast but i do feel like ive got a little bit more blood in me today, my veins arent up so much on my arms either!
its just that weird constant yawning every time i get up and cold dead arms that reminds me ive got no energy to spare yet..
I want to do this today so im not scared of being left alone here..

Tuesday, April 19

Scared

The last week has certainly brought shocks.. None of them very nice but that's life's way of smacking you across the head and letting you know nothing is ever certain..
lem went down diving with his diving buddy for lobsters, after my mum had told him not to go, and sadly now looks like he met his end to the sea.. They don't think he resurfaced, he went down along with this other chap, the boat carried on following the buoy as they usually do thinking Lem was attached to find it had been severed.. the tide was taking the boat away from where he was of course and they didn't know.
This morning at 1am 5 days after going missing his diving buoy, air jacket and anchor came to surface along with empty air tanks but still no signs of any bodies.. Its a small comfort to my mum to think that he died quickly by drowning, rather than imagining him treading water miles out to sea for days on end until he no longer had any fight left.. I really feel for her out there and hope my big sister can help her get through such a difficult time in her life.I wish i was there with her..
We may not ever know what happened to him on that dive, but inside i think that a strong current either wedged them somewhere under water so he couldn't get out, he wouldn't have ditched his chest gear otherwise especially not his life jacket un-inflated..It makes sense that he was stuck and when left with no air just went for it and ditched everything for a last minute attempt in getting up to the surface..
My mum told me when she went to live there that if she lived another 6 years with Lem out in Tobago she would die happy, they were married for 12 but shes heartbroken as they had only just got themselves sorted out with building their house and getting the boat up and operational.. she expected that she would die first because of her age.. fate has a cruel way sometimes. Lem was only 39 years old.....
Things from my end havent helped mum much either. A couple of months ago i had a day where i kept experiencing chest pain, everyone said i was overdoing it so told me to slow down,I did in some ways, but this house doesn't allow it for long, things have to carry on and bills have to be paid. I didn't get any more after that day so presumed i was just tired or coming down for something, I was worrying about my gran-parents who were then moving into sheltered housing and upset with some things that had happened.
I have always had low blood pressure so does my mum, so just put it down to that..

last Wednesday after talking to mum on the phone about lems dissapearance i experienced what i can only explain as severe burning, tight pain in my chest, i couldn't breath and had this horrible sick feeling of a burning doom rising from my chest up my neck, I was so sweaty and ill i honestly thought i was on my way out, i cannot remember anymore after that, I woke up being held by my neighbour David with him stroking my face and telling me to breath, surrounded by ambulance men it wasnt really clear what had happened to me.. Id apparently stopped breathing for more than 2 Min's.. Sometimes its worse for those who witness, I was lucky David was there, my fella was at work. david had come to collect me for work, i was supposed to be working at his sisters house that morning! Hes always so calm which was bloody good luck he was at the door when i went down and saw me hit the deck..
I was taken into A&E under blue light which to be honest i don't remember much about, all i can remember was a feeling of feeling so horribly sick. I only had that one attack that day so after 24 hours they allowed me home saying they thought it was Addison's decease.. they took bloods to test for it and said they would consult my Dr as soon as the results were back and that i could go home if i took things easy for a few days..
They didn't think it was my heart then.. but weren't sure what happened as sometimes these things happen with no reason or cure and just sort themselves out...
Within 6 hours of being home the same thing happened again, this time with my fella totally panicking as he thought i was dead in his arms..I had no heartbeat again and no breathing for about 2 Min's...... poor bugger was scared shirtless, hes never been good if i get ill as he will usually ignore me and hope it goes away quickly, but he said he had never been so scared in his life, it really shook him up having to deal with it..
I went back under blue light but within an hour of being in there i had another seizure, my fella had gone to get me some water as i hadn't been given a drink in hospital the day before.. I was so thirsty but they kept saying perhaps later, when he did get them to agree to let me drink, he came back to find me having another seizure.. it really wasn't good.
I have never been that scared in my life.. I wasn't scared of dying, the feeling and pain you get is indescribable, you feel like its the end theres nothing you can do about it, I was just scared of dying alone..
I called and called for help, holding my chest on that bed, 3 or 4 nurses looked at me but NO ONE came.. i cannot remember anymore than
They didn't help, i sat there sobbing pleading for help. One dr looked me right in the eye to then turn his back on me and sit at his work station ignoring what he had seen.... when im feeling better im purposely going up A&E to smack him one.
My fella apparently walked in as it was all happening so could see exactly that no one was there from across the ward.. The nurses only came over when he screamed at her to 'fucking do something' by that time i was fitting on the floor as id fell off the hospital bed.
I can appreciate they get drunks, drug addicts and all sorts of not nice people in there for treatment, but the way i was treated was appalling..It was one fuck up after another for 4 days solid..
I was transferred onto the heart ward for 24 hour monitoring only to find that out of the two monitors they had one was broken, the nurse said she would sort it out in the morning and that i should try and get some sleep.. my fella hit the roof and lodged a complaint saying he was taking me home if they werent capable of looking after me properly. One lady with a clipboard came down from my previous ward panicking saying how sorry she was that this had happened to me again (2nd time in 24 hours) and assured him i would be put straight on the monitor within 5 mins... it was a joke..
I don't complain, i never have done, I will walk away when needed to not cause trouble and try and sort it myself, but when its your life on the line its not funny.. I was so glad he was there to stick up for me..
I did get a monitor after about 4 hours, they just kept unplugging me every 2 hours so they could use the machine to take the rest of wards blood pressures.. and this was a heart ward!
I had 4 more seizures on friday, 2 more Saturday morning while i was unplugged and they were borrowing the machine..
I just wanted to go home......I didnt feel safe in there..
The trouble is there were 7 levels of management up there with no communication at all between each level, my notes were lost, left on a wrong ward and i wasnt given any water, the first thing that comes up with dangeriously low blood pressure is dyhydration.. its happened to me and is happening to other people too! The lady next to my bed was holding my hand along with a cleaner on my last seizure as my nurse was on her T break and the one who was covering was with another patient! that one nurse does the job on her own now that 4 nurses were filling last year.. It says it all really.......
The heart specialist was there at one milder seizure and said my blood pressure was dropping so low it was causing the heart to spasm, seize and stop which was then shutting down my brain as it was being starved of oxygen.. so at least i know what im dealing with here and will try and help myself as best i can.. its not very nice though having to sit there experiencing that pain with the dr chatting away to his understudies watching.. not one of my best armchair moments thats for sure.
I need to get through until the 28th April, so the machine i need is available for me, to tape my heart and record whats happening... The monitors at the hospital dont record, so unless the drs there watching it happen it doesnt help them enough..
I know whats happening as i can feel it, so ive turned to the Internet to help myself..
The internet holds so much valuable information that can really help you feel better...
My dr came to see me this afternoon and says whatever im doing seems to be helping, I havent had a seizure now since Sunday morning so its a really positive move for me .. I'm trying to do a little, then sit down, til i feel well enough to do a little bit more, its slow but its working.. it is my balance and the only way i can seem to hold these off. Unfortunately work doesnt stop for illness, I still had orders to pack as well as a family to look after here.. I came out of hospital to have to pack a weeks orders, if it wasnt the truth it would actually be funny...........
I honestly wondered if stopping smoking wass what had kicked this off.. my Dr said smoking raises blood pressure, which for most people isn't good news, but when you have really low blood pressure it can help and possibly raised mine enough to take me out of the danger bracket..Then again this could have all been brought on by stress, I honestly dont know....
The ironic part is i dont want to smoke, i saw people in hospital who did and who now couldnt breath.......like fay..
Ive had 3 days of drinking neat beetroot juice, raw vegetable smoothies, and drinking 6 litres of fresh lemon water, between meals per day.. and do feel better than i did when i came out of that place... Although I'm still nowhere near where i need to be yet....Id rather be here on my own than that place full of filth and understaffed wards..Im sure you would get sicker just by being there..
Tonight is the first time Ive been left here without my fella so I'm a little apprehensive.. I decided id write in here so i don't carry the worry as the boys are already arguing with each other and stressing me out so i thought this may help me ignore them, it used to help me offload many of my feelings before so hopefully tonight it will grant me the same thing and let tonight go by without ending up back in that place..
Steve has to work, hes had a week off already and missed so many important meetings.. life cannot stop because of this, the kids need feeding and life has to carry on..
I do have Ryan upstairs to help if i call, so i am gonna try and stay calm in myself so i can let him get some kind of normality back.. This place falls to bits when im not here, there's washing all down the stairs and the place looks like a bombs hit it...
The kids Mum here needs to get herself sorted out as quick as possible, the kids have no clean clothes left mum!, theres no help as usual from anyone as there isnt anyone to help..but the other side of Jo's too fucking tired to do whats needed ...its time they all started pulling some weight here..my fella is right on that account..
My mum is flying home with Julie on my birthday in may so im trying to get myself better with some kind of a diet change to hopefully get myself well for then.. if i try and take better care of myself for a change i may be able to do this..