The fears of day to day living & It's my Birthday

Me again, so sorry, I’m very tired and very slow these days, I’ll explain more further on.

Well I made the awards, had an amazing day but it was all so tiring, everything these days is so tiring for me but I’m still here, still fighting fluff, I surprise myself at times.

In terms of surprises, well my life is full of them at the moment mainly good and I’ll try and focus on them.

Andy had decided that following the success of the wheelchair expedition to the Merseyside Women of The Year Awards and that Tony from the hospital had now referred me to wheelchair services for my own that we needed to do something about the vestibule, I’ve hated this thing since I moved here, we needed it for storage

to a degree, it was like a mini potting shed and the BBQ was in there too but it was old, very old, the timber was rotting, the roof leaked whenever it rained and well I didn’t like it but we had other priorities in re-modelling Shute Manor or hehe the money pit as I call it. Andy announced he was going to have it taken down and a ramp put in to enable me to ‘escape’, oooh this is scary stuff, what does he want to do, I know what I want to do with it but Andy doesn’t always listen to me, weird given as I’m in charge around here hehe! His “I’ve got it in hand” approach isn’t going to wash with my c

urrent level of agitation, “Tell me what you are having done, It’s still half my house, I know what I want!”.  As it happened he proposed a decking style ramp with a balustrade all around it, I was thinking

the same. “You need to show me the sort of rail, I need to see pictures to visualise it” we found some on the internet but I still wanted to see the detail of the spindles etc so I needed to see the real thing. Andy had posted the job on rated people, only one company answered, thankfully the guys could do the job and quickly, it was Tuesday, he could start Thursday and thought he’d be finished by Friday. Price wise Andy wouldn’t tell me but I’m no fool I know it won’t be cheap demolishing the vestibule and building the ramp and landing, guess what? Yes I’m worrying about this, I really worry about everything and anything now.

Thursday came and Andy who is working flexible hours with work due to needing to see to me was still at home but had to dash to our Doctors and then to our pharmacy to get me a prescription item that I needed. Before he left he explained to Maureen that the Vestibule roof had live electric wires in it and asked she told the builders, he didn’t want them electrocuting themselves. Maureen didn’t hear Andrew properly and in his mickey taking way asked if her hearing aids were turned off, she explained she hadn’t slept well and had a ‘muzzy head’ he suggested she go and rest and he’d be back, on his return the team were dismantling the vestibule, Andy sorted my drugs out and went in to the kitchen to see Maureen who despite being ‘asked’ to sit down and rest was making cakes! Andrew asked how she was and the truth outed, she’d had the headache since Monday and it’s Thursday! She also indicated, well I’ll let Andy take over for this bit… Mum said to me she also had a pain in her chest on the side. I told her immediately to sit down and I was dialling 999, I requested an ambulance, Maureen, Mum, Mother, well she didn’t look well, I’ve lost Henry my mum’s soul mate in January, I’m going to lose Julie this year and now the prospect is dawning this could be the hat trick from hell! Within two minutes a RRV Rapid Response Vehicle with a paramedic arrived and thirty seconds behind him an ambulance and crew, incredible turnaround and compared to the two hour wait for Julie absolutely unbelievable.  The guys soon had her wired up for an ecg and examined her, she explained the not feeling well and the pain in her side. The consensus was this sounded like angina, “We’ll take you in to get you checked out”, even now typical of Mum’s generation she is fighting going in to hospital! “I can’t stay in, I’ve got to look after Julie”, I butted in “You’re going in and if you have to stay in you will”.. “I’ll sort Julie out”.. The paramedics put mum onto one of their chairs with wheels and set off with her, I broke down and cried, I needed to be with mum, I’m genuinely afraid now, “Please god let her be ok”, I need to be with her but Julie is on her own, the carers are here they’re shocked into silence for they’ve truly taken to Mum, everyone wants to adopt my mum for varying reasons, Julie can tell you more later. Anyway, the carers cannot stay, it’s not their job. I’m quickly back in my business like minded rational head, I need to find cover for me. Our dear Neighbour Corrinna was in Canada or she would have been over for me/us, everyone else was either working or too far away, my Mum lives in Warwickshire where she has lots of friends, here she knows no one she is in an ambulance on her own and well I hate to think the worst. Suddenly the only person I could think of was Hannah’s mum Andrea, though she lives in Spain and I recall she was going back, their whole family have become amazing and true friends, yes mainly to Julie but as a result of this we have all grown closer. I messaged Andrea and asked was she in the UK, she answered immediately she was in Hannah’s new flat, as soon as I told her with no hesitation she just said “I’ll be with you in twenty minutes”. I’d kept all the fuss away from Julie, this was something to fret about, in the end I had to explain Mum was poorly and had gone to hospital as a precaution, that Andrea was coming to sit with her so I could go to hospital. I hugged and thanked Andrea and dashed. At Julie’s ‘second home’ Arrowe Park hospital I was guided towards Maureen, it’s amazing how frail she suddenly looked to me, she had seen Doctors and Nurses all super-efficient they’d tried taking blood but she’s renowned with not parting with it, even their ‘champion’ of taking blood was struggling and decided she would delegate it up to a Doctor who had ordered the blood tests, ha, he laughed when he heard and true to form second go he got blood from Mum. His view was her vitals were too good for this to be heart related BUT he would have an elongated ECG done and check the blood results, in Arnie/Terminator fashion it was “I’ll be back”.. When he did get back he confirmed that the chest pain was “Muscular or Skeletal”, phew, the relief was intense, mum could come home subject to the ECG. I had to get back for Andrea was time limited, I asked the hospital call me as soon as Mum could be discharged and back home Andrea and Julie were both good. I let Andrea get on her way, it’s a times like this you find out who your true friends are, I’ll never forget the kindness a chance hospital ward encounter and the friendship that has come from it had created friendships that will last a lifetime now.

I’m sitting with Julie about an hour later the phone rang and it’s the hospital Mum is ready to be collected, I have a dilemma, Julie was safely in bed she’s not been left alone before but I have no one now to cover, I knew I wouldn’t be at the hospital long and we have an emergency button/call service though we’ve never used it. I explained to Julie that I had to leave her but it would be for 15-20 minutes only, she was rightly concerned, I explained about the call buzzer and hung it around Julie’s neck, the risk of her needing it was very low in my opinion and I had no choice, also the builders were outside as a last resort,  so I drove like hell and got mum home in around 20 mins. I had already called work and told them I was taking today and tomorrow off I was going to have to play nurse to both of the patients. As gently as I could I explained to mum I needed her to take it easy, that she is frightening me, I explained my previous comment about losing three of the most precious people in my life, I needed her to slow down and stop trying to run up 28 odd large Victorian stairs to the laundry room on the top, I need to stop her from ironing everything, we already Tracy our Ironing service who did my shirts and the bedding, more items had to go out to be ironed and more bedding was needed to reduce Mum’s workload. This really is a wakeup call of all wake up calls. Julie then spent two days in Mother hen mode and lord help Maureen if she got out of her chair even, lol these two have developed their own method of communication by looking at each other, smiling, scowling, lowering eyebrows it’s like gunfight at the OK Corral  at times as they not so playfully joust, I just look on and try and broker a peace deal as they burst into laughter or equally snap at each other, sigh, get me back to my office desk quick hahaha.

 So Thursday is a wash out and recovery day, Friday was similar, the ramp was coming on a treat! I was truly impressed, Julie couldn’t see it but the nurses and care teams were updating her, I took a few pictures, “I’ll soon have you out of here hunny”.
Right enough from him, I’m back hehe, Maureen scared me, I am so reliant on her now, we all are, she does everything for me during the day, I truly feel like an adopted daughter, I told her I wish I’d known her 40 years ago, she’s so incredibly kind, I genuinely feel loved by Maureen and yes I love her too, I’m so fortunate she’s so kind, she’s told me she will be with me until the end, I’m scared of the end coming but I am comforted knowing Maureen loves me and will be with me, I want to cry…

So Friday Maureen feels a little better and I’m stir crazy not able to do things and I can see Maureen wants to get back to her tasks, I’m having none of it! I truly am not, at the end of the day I cannot stop her for I am trapped in my bed and then im at the point where my concerned bossyness has reached the point where if you decided to poke a dog with a stick even gently whilst it may find it funny initially it would eventually tire and snap and bite, Maureen and I were close to this, but we survived it. Andy was overseeing the decking ramp being built, the team had done a great job, it was functional but not completely finished parts of the balustrade and rails were missing, as the back of it was about a three foot drop when I eventually saw it for myself I found it scary. But the guys would be back Monday. Andy announced “We’re going to New Brighton to the Marino Lounge & café for lunch tomorrow. Here I go again, I’m full of nerves and what if’s. I wanted to go out but I’m terrified my four walls have become my world, well until tonight that is!

 Andy and the carers hoisted me into my wheelchair and for a change of scenery he wheeled me in to the lounge where he and Maureen sat in comfort, Andy laughed for I sat there surveying the room for dust, for things out of place, for things I’d told him to get rid of that the bugger hadn’t! I’m not having MY house a mess. Something was amiss though, eventually It dawned Andy had treated ‘us’ (himself really) to a Bose Sound System for the TV etc last Xmas and it had sat in the TV cabinet, in my ‘absence’ it had sneaked out and was on top of the cabinet. He argued the sounds were clearer and better and that as a surround sound system it could not work in the cabinet, brutally he told me “tough its staying out”, he’ll suffer for this yet hehe..

So my chair was so comfy again, I felt easier about going out tomorrow but “What about the taxi, I can’t get out of my chair”.. There are larger Peugeot E7 cabs and its possible for me to ride in one still in my chair, a standard hackney cab as we discovered when the wrong cab turned up wasn’t going to work. Andy had called the Marino lounge and they’d reserved us a table. Our first jaunt out, it was scary especially the ramp but it works, I was free, scared but free! So at New Brighton, I’m well wrapped up in my chair blankets covering my modesty for naughtily lol I can’t wear knickers with all the other bits and bobs hehe, there’s been times in the past yep I’d been that daring and naughty, lol before I met Andy I once got a train to meet a boyfriend and all I was wearing was hold ups, high heels and a rain mac hehe, I’m giggling at that, I’ve had my moments lol but sadly those days are far gone and naughtiness is the furthest thing from my mind now. I do have a dress on and I have my Doc Martin soft canvas flowery boots on. I look as good as I can do, today is a good but scary day. It turned out too that the nurses were ok with me having wine despite my cocktail of drugs. Settled in at our table Maureen’s bargain £8 home bargains trolley was being unpacked, my cup, my plate, my tray. I cannot sit at a conventional table now well I can sit at it but not eat or drink at it. Oh Winston was with me too and my seizure meds, didn’t need them though, phew. The staff were incredibly

Cheers

kind, the food was scrummy, Andy slid it on to my plate and cut everything up for me and he’d ordered a bottle of prosecco, I love champers and prosecco!

We had a great afternoon but again I’m worrying, I keep saying to Andy “We need to go now” lol I was doing it periodically from when we entered Marino Lounge, “why?” he asked, “The carers will be at home, I’ll miss them” the reality is and he tries to ease my concerns by reminding me the carers come around 6.30 and Andy has already told me we are getting a cab back home at five p.m. “Stop worrying hunny we will be home in plenty of time” easier said than done in my head and twenty minutes later we are having the same conversation.. I hate fluff!!

Getting into the taxi is a challenge my chair has to be tilted right back so I don’t bang

Winston @ Marino Lounge

my head, we are soon home and the ramp makes a big difference though I don’t like the drop at the back of it, roll on Monday when the man comes back to finish it off.

I’m still having my seizures, I’m getting increasing headaches, I’m fretting an awful lot I can’t help it it’s so not me, I try to hold back the tears but it’s not easy, as soon as I cry even if its quietly someone notices and tries to comfort me, if its Andy invariably we both end up in tears, we  both know we are going to lose each other, life is so unfair.

The following weekend the weekend before my Birthday, (it looks like I’m going to make another birthday!!) Part of our second family as we lovingly refer to them Karen, Jamie, Alex & Grace are coming down to see me/us. My illness has robbed us of precious time with one of the most amazing families, Karen is Vince & Denise’s daughter, Andy’s dearest friends when they first met me almost 13 years ago warmly welcomed me into their family, some of the best times we’ve ever had have been at their family events, Weddings, Christenings, Anniversary parties, we even did a USA road trip with Vince & Denise, it was laughs all the way, I’ve missed all the fun recently, rather ‘we’ve’ missed all the fun recently, I forget so often how my illness has impacted on Andy’s life too, he’s had two nights away from me in two years, all of our social events, we used to love concerts, we loved dining out with friends, for two years it has almost just all vanished, we were always somewhere now we are mainly in our dining room…. I truly hope Andy isn’t ‘forgotten’ after I’m gone, he’s going to have to rebuild his life, cope with my loss, he’s told me already he’s ‘going to have to move’, “too many memories and what do I need with a house with 17 ‘rooms’ in it on my own?” he asks me. The next few months are going to be traumatic for everyone I know….Damn you fluff, damn you!!

Enough of the feeling sorry for us, back to Karen & Jamie coming, I am so looking forwards to it but I’m also slightly apprehensive for the children are young and I’m not as able to cope these days, I cried after I snapped at our grandchildren a few months ago, I don’t mean to, it isn’t me, it just isn’t me. Meanwhile back at Karen & Jamie coming hehe, a few days before Andy gets a call of John, his cousin in Northern Ireland, John and his brother Chris want to come and see me/us, they plan to fly in on the Saturday Morning and fly back Saturday late afternoon, a real short visit indeed, I’m so touched the guys want to see me, we’ve only met three or four times when we’ve visited Ireland, I love Ireland! Did I mention Karen and Jamie are coming to see us? Hehe… I’ll get there I promise. Everything is set for the visits until Andy comes home on the Friday night and chaos kicks in, I heard his car pull up, about 45 minutes later he comes in the house cursing, he’s fuming, furious with himself, he only reversed his car into one of our brick gateposts, damaged the wing mirror, scrapped the paint on his door and the front wing and as his window had been open the damage caused meant the window would not close! There is no way the car can be left out overnight for it is ‘summer’ here and it’s throwing it down with rain day and night, also the chances of the car being on the drive in the morning would be next to nil. So ten o’clock at night and he’s having his car towed away, try finding a hire car at that time of night… First dilemma, Andy is meant to be picking up Chris & John at Liverpool ‘John Lennon’ Airport at 08.00, he has no car now! He messaged John and asked could they cab it over here instead, they kindly did. Andy found a hire car and not long after Chris & John arrived dashed off to get it. When he got back he’d decided we would go out to New Brighton for lunch called Josh at Marino Lounge, reserved us a table, called a cab remember we need a big one. So I’m back in my chair and we are heading to New Brighton, well Maureen, John and I are for despite the cab size my wheelchair takes up the rest of the space. Andy and Chris set off in the hire car. We got to New Brighton roughly the same time god, it was cold today. Our table in Marino Lounge was booked and ready for us and we had fun, John & Chris catching up with their Aunty Mo, and us all having lovely food. Around three as the guy’s flight back was at six (yes arrived at 8 fly back at 6) so Andy started calling a cab, 40 minutes later and not one local company could or would supply an ‘E7’ cab! Andy realising the time made the judgement call that we should get the train back to Birkenhead the guys would get the train to Liverpool airport and then Andy would have to come back to New Brighton for the car…

The train station at new Brighton is half way up a sodding steep hill, OMG, we nearly killed Maureen, Andy &  John pushed my chair up the hill Maureen and Chris coming up behind, Maureen being Maureen hadn’t said she was struggling to keep up, Andy was too focussed on me and making sure the guys got their flight ok.. We got to the station and sorted tickets out, we got Maureen sat on a bench, she looked poorly again, I’m worrying again… The Merseyrail station staff are incredible, they asked did Andy need the ramp for my wheelchair and supplied it, they called ahead to our station to tell them to have the ramp ready too! Amazing service. We had to say our goodbyes to Chris and John on the train, I’m in tears for I know I won’t ever see them again, fluff! I so effing hate you!  We got off at Hamilton Square Station as there is a taxi rank, invariably and no surprise we got an E7 cab from here! All the hassle all the problems because well someone at a cab company or ten could not be arsed, sorry but leaving a disabled woman stranded like that is appalling! Another crusade for Andy me thinks…

Well we get the cab home, next time Andy says he’ll book cabs out and the return to save this madness. We get out of the cab, Maureen is desperate for the loo I want in the house, I think Maureen has the keys so I told her (sorry I was rude and impatient) to go open the door, she had no keys! Andy has the keys… he’s behind me.. the only keys Andy has are to the hire car! The car is in New Brighton and the house keys are…. In the car in New Brighton… You could not make this up! Andy says, “Keysafe”, we have a Key safe so he shouts Maureen to come stand with me, as he gets to the key safe he opens his phone to get the code out and his phone battery dies!! You really could not make this up. I’m panicking now, Maureen is crossing her legs, Andy has no hair left to pull out hehe. He suddenly remembers dear friend and neighbour over the road Corrinna has the key safe code, thank god she was in and her phone battery wasn’t dead! Two minutes later we are in the house! Did I mention Karen & Jamie are coming? Hehe.. They’re outside! We’ve been home two minutes, Andy greets them they come in and then he has to dash to get the car, Corrinna kindly offered to take him down. Half an hour later he’s home and his elaborate plans for dinner for all were out of the window but everyone agreed to and was happy with pasta bolognaise.  I needn’t have fretted about Alex and Grace they were brilliant Andy had got a big box of things for them to make, it was so good to see everyone, I’ve missed them, Grace & Alex told me about seeing the lions and animals at the safari park before they came to me. I love children, I’m going to miss all of the ones close to me…

‘Team Everson’ had travelled down this morning from County Durham they are back home tonight too, amazing friends flying in and out on the day, amazing friends driving long distance across the Pennines to see me too, I am blessed. I don’t know how but I held it together as I said goodbye to them all, with Karen whom I’ve been closest too it was the hardest but I did it, I don’t want people to see me upset, again this is probably the final goodbye, its unspoken but it’s the unbearable truth..

It’s been a long day, it’s been a crazy day, it’s been fun and poignant, I’m so tired now..

 

My dear friend and former neighbour from Grimsby Janice couldn’t make it to my party on Friday so she came midweek, drove from Grimsby & back in the day, we’ve had such a special bond for many years now, again it’s another final farewell…..

Cake Decorating

Next weekend is going to be busy for a different reason, It’s my birthday Friday, I don’t want a party, I couldn’t cope with one but I won’t let it go uncelebrated, We invited close friends and family to an afternoon and evening of well just tea, coffee and Maureen’s cakes, I helped decorate them! The mornings are so busy it is just a constant stream of carers, nurses and carers. By lunchtime the table is looking
full, I’ve bought retro style tea plates, napkins and bunting to have hung around the room, I’ve got balloons up too!

Andy, Eve, Me, Winston, Ralf & Viv

We had a steady stream of visitors, my uncle John & Aunt Sylvia had travelled over from Grimsby, Vince & Denise drove down from County Durham and home the same day, ‘my Letty’ came over Thursday to stay as she thought she couldn’t get Friday off work but an 11^th hour reprieve and she stayed all day! Jane a lady who owns the cutest shop called the Drawing Room in Oxton Village came to see me, I used to love to walk up to her shop, her gift range was gorgeous and different, Jane always made me feel special whether I was spending money or not, it’s strange how we become friends with people in varying ways, we were certainly more than retailer and customer. Lots of people were coming and going, Andy had a few surprises for me, one involved him disappearing for around 90 minutes, I don’t like him being away from me, he’s promised to bring someone who wanted to come to meet me, he’d made the promise originally planning to work and would pick a lovely young lady and friend Nikky up after he finished work for she works in Manchester. One of the things I admire about Andy is he is true to his word, if he makes a commitment he would only break it under exceptional circumstances, as a result he drove to Manchester, collected Nikky and brought her to Shute Manor, it’s a long story how Andy had become friends with Nikky, they’d not met before today but thanks to the internet well we’ve met and made some great friends. Whilst he’s away pandemonium breaks out, an amazing surprise, Andy had invited Viv, Ralf & Eve from Channel 4’s Gogglebox, they live locally and similar to now friends Leon & June they had been both pushing for votes for me for the MWOTY  awards and they had been asking about me from when I was in Arrowe Park Hospital, Andy met them in person there in a chance meeting. Anyway Viv and Eve both asked about me regularly even on holiday Viv was messaging Andy privately, I’m still not sure what I’ve done to attract such kind and amazing busy people. Well Suddenly Viv, Ralf & Eve are at the door, we

Ralf,Maureen,Viv & Eve

are all gobsmacked, they came in and wow they were amazing, they stayed almost three hours, Andy eventually arrived back with Nikky, I told her off, she’d brought me ear rings! I’d said no presents to everyone, I had flowers galore arrive, candles and ear rings. I am still in fund raising mode for Clatterbridge so Andy had got one of their sealed buckets and we’d asked people to if they wanted to leave a donation for Clatterbridge instead of buying me anything, I’ve on use for anything now…. Well back at the open house, Everyone is falling in love with Maureen and her cake, Eve and Nikky are both adamant they want to adopt her and take her home! Hands off she’s mine! It was hilarious, Eve I have to say was amazing, for one so young she is so polite, so well spoken, a credit to Ralf & Viv, we share a love of things vintage and the age difference is immaterial, Eve is amazied that Letty and I are so with it Vintage brand wise to Letty about Eve’s dress she said “OMG how did you know it’s Hell’s Bunny?” We laughed, it was time for them to go so Maureen is making up boxes of cakes for them to take, and I’ve got my beady eye on them making sure they don’t nick Maureen hehe. Eve asked me if she could come visit me again and talk more vintage, how sweet is that? There’s a good thirty years between us, we’ve never met before but there is an instant bond, it’s at times like this I hate the fact that I’ve little time left to enjoy Eve’s company..

Andy dropped Nikky back at the station around 10.30, I was asleep by the time he got back, Maureen had cleaned up, she must be exhausted, I am, it’s been hell of a day. Andy came home and got his blow up mattress and duvet and settled down on the floor next to me after having given me my nightly dose of meds.

I woke up at five thirty a.m. and I am in pain, Andy asked me did I want a shot of my liquid morphine, I told him I did, at times my pain is bad today it seems worse but it’s in my feet and ankles today. By 08.45 always prior to the carers arriving as I’m just getting out of bed and I’m hoisted washed and dressed there is a lot of limb moving so I take a dose of the liquid morphine just before they arrive now.  Today they’re running late, weekends are difficult for care agency’s getting staff and everyone has to have a day off. By 09.30 my pain is so bad I’m sobbing, the 5ml of morphine I’ve had so far isn’t touching it. It’s seldom I cry in pain, in fact Andy commented this is the first time he’s seen me cry in pain, he’s right.. Andy called the emergency GP out of hours and  a Dr called him back just after, explaining everything the pain, my crying, the two previous doses, the Dr told him to give me a further 10ml of morphine, Andy double checked definitely a further 10 ml on top of the five already? Not another five to take it to 10ml? No definitely ‘hit me’ with another 10ml so fifteen in total the GP added a higher dose could be given but work on this for now. Andy loaded my syringe and in between my sobs I swallowed the lot eagerly. My son Aaron and brother Philip were staying, I barely remember them there on Saturday, apparently I did speak to them but I’m clueless, I lost almost two days, the morphine had pretty much put me out all I wanted to do was sleep, the pain had gone though.. On Sunday I said goodbye to Aaron, again it’s probably the last time I’ll see my son. Monday I said goodbye to Phillip, so many goodbyes.. I so hate you fluff….

I want to end on a positive.. The generosity of people astounds me, my birthday visitors had been dropping envelopes and money into the Clatterbridge Cancer Charity Bucket, Andy had promised to match whatever the total donations amounted to.. The total was a staggering £250 which Andy matched to £500! WOW…. ‘Team Julie’ strikes again, just a single pound makes a difference to this amazing charity, £500 is seriously significant to them.. The same weekend Karen & her friend Jaime ran a colour run in Newcastle in CCC Tshirts and asked for CCC donations, roughly another £100, people say I inspire them, I’d reply you all humble me…

Right now I never know if this is my last blog so I’ll wish you all well, I know Andy will keep posting, I promise I will chip in for as long as I can but I can’t promise how long that will be for now… Sending you love & kisses.

Did I mention it's my Birthday? hehe