Day 13: 13th June 2022

Goodbye Old Home

Day 12 was a mixed bag!

Feels good to draw a line under a chapter and move on! My wife has to go and pick a slide and some bits up off the drive but the house and garden are done and keys have been handed over.

Weirdly, I didn’t cry; felt a bit numb actually and quite anxious to get it all done.

We have had tonne of compost on the drive that was delivered to start some landscaping over a year ago. I was going to put some raised beds in but then went into a bad flare-up and into hospital. For a whole bunch of reasons that just kept getting in the way, we never did it. Must have been fate that stopped us spending the money.

Our lovely Mercedes Sprinter Van that is converted into a Drive from Wheelchair Vehicle (DFW) who we call The Beast of Formby due to the number plate being BOF was may need a new name now we have moved. For now she is litterally full of earth and once again supporting us in our endeavours and adventures. I was anxious that her wheels might starfish out like a child who pinches the bed! – Redundant with her tongue out and panting as there was so much weight being carried to our new home. She did good as always and made her way to our new home slowly but surely.

I was so anxious and distracted by the thought that the van may collapse under the weight that I didn’t even say goodbye to our Formby home. My wife was anxious about leaving as the landlord has been giving us a hard time and she didn’t want me to be there when the keys were exchanged as he may have misused the opportunity for conflict as we have put a case together due to them not doing repairs and maintenance. We have had a leak we reported in September that they haven’t touched. It is a shame we are not leaving on better terms.

We won’t be taking them to court unless we have to but have a good case and evidence collated. Instead, we withheld the last 2 months rent after the bathroom tile fell off on Dylan in the shower and we lost a load of furniture to damp after they did not fix a leak. They also screwed us over in a bunch of other ways that I won’t splatter all over a blog. Safe to say, we have not parted ways on good terms. They have been awful landlords and we have paid our rent 1 week early for 6 years and put thousands of pounds into developing the property.

We’ve put £25 grand into the house in upgrades and repairs thinking we would be buying it as they offered us it at a lower rate, only to mess us around at the last hurdle. When all came to all, it just wasn’t a good investment and would need immediate work doing and lots of money spent to be inhabitable. Structurally, we knew we could not make it what we needed for full accessibility. That’s what pushed us into moving earlier than planned and unfortunately in the middle of Dylan’s GCSEs – along with a bunch of other factors that you have to consider when spending an excruciatingly painful amount of money. In the end, Formby was just not in our future.

It’s sad the ending was a bit bitter but we are glad to draw a line under it and grateful to have plinths and draw fronts that don’t fall off anymore; not have to be scared a rotting wall might fall down; and spending dead money on someone else’s property! I’m not resentful about how much we spent and 6 years of paying rent on top of that for someone else to reap all the benefits but I do want to walk away from it without any conflict. We decided to send in the cavalry to do the key exchange so we weren’t face to face with this guy who we have not heard from, had an inspection from and who we have found out was never a legal landlord in the first place. He appears corrupt and greedy and he’s been threatening and trying to engage us in conflict and arguing.

What he hasn’t known is that my and I have resolved disputes for a living! We see the back and forth between emotive adversaries and have had to sieve through the reams of feelings splashed about making points and counter points and both parties thinking they are right and digging their heels in. Expressing their anger and resentment and engaging in conflict. It has been part of both our careers to mediate between parties so we have put these skills to good use not to allow any conflict to escalate.

We were just not going to buy into that. We did what we have advised many separated parents to do at work and not engaged in the back and forth, taken the emotion out of it, been clear and concise, protected our position by not over sharing (no really, I kept it short and sweet). We ensured we were not triggered by his attempts to get a reaction out of us and gave some time between correspondences to reflect on what we needed to say, we were polite and friendly but professional in tone and language.

It felt good not to get wound up about all the language and tone he used and not to get caught up in the drama. The potential for it to cause stress was reduced by us just not engaging in the conflict. It takes 2 sides for conflict. So we removed ourselves from it and like we have advised parents we’ve worked with, we stayed calm and collected, found out what we needed to to understand our legal position, and prepared for the worse by collating evidence.

The most anxiety provoking time was when they threatened to come face to face because then we would be at physical risk. We worked it like a domestic abuse situation and communicated and protected ourselves as such. It’s similar to domestic abuse in that there is an imbalance of power and one aggressor. That’s the key difference between conflict and domestic abuse – power and control! Our training came in useful and we brought in a third party to avoid face to face communication- like we have advised hundreds of people between us over the years of working with domestic abuse.

As we were loading the last load of compost, and items, my wife was wanting to rush and fill the van so I was safe if he turned up early and I was convinced we could do one more run and petrified the van would give in with more compost! We were so anxious, each for different reasons- me that the van would break and my wife that the landlord may beat us up, that we forgot to take a moment to reflect together and say goodbye to our home.

We left with hazard lights on, having bickered about the suspension on the van, and with me crawling at 20 miles an hour feeling every slight ripple on the road surface as a potential last straw for The Beast and panicking!! That is not how we wanted to say goodbye. It was not how we imagined our last day in Formby would be.

We sent in my brother in law and his partner to hand over the keys and were grateful for their acting as 3rd party to protect us. We haven’t heard anything – touch wood – from the landlord yet but have all the receipts of money we’ve spent and an account of our losses that far outweigh 2 months rent. We have a case prepared for injury and breech of tenancy and evidence of everything – working in the court arena has served us well. We paid 2 months deposit when we moved in and have not requested or expected that back. They’ve broken even financially and are going to make a shit tonne of money illegally and at our expense. We are happy to draw a line and walk away. Let’s hope they let us. I’m always geared for a fight if needed but never want to have to. That’s what my dad taught me: Never throw the first punch but be ready and able to end it! We’ll see what happens next.

We were greeted in our arrival to the new house to a long awaited visitor who has supported us through our decision making by listening to me ramble on (no one would have guessed I could talk a glass eye to sleep!). She’s given some good advice as we have pondered our life choices over brews galore this last few months and we showed up at her house on moving day tired and hungry and she fed us and gave us somewhere to relax away from it all. Thanks Nic!

She also brought some muscle in the guise of her son who helped unload the van and some light entertainment in the form of her young grandson. Being around children is the best way to put the world into perspective. To see the world through their eyes always amuses and calms me. Protecting children is my bread and butter and spending time with them is one of life’s most precious gifts. We played Zombies and talked about the book we are reading on my visits to his house – George’s Marvellous Medicine. I took a much needed break to recharge and recalibrate over nerf guns and talk of phonics while Nic and her son ensured Moo had a bed to sleep in and some space in her new room which has been treated as a furniture store thus far. Building the bed in a very confined space was very talented- well done

We went over the road and was treated to a nice meal with great company! Friends are the family we choose for ourselves!

Then it was brews and Lego while Nic’s son and Dee put some heavy boxes into the attic! Very grateful!

Dee has spent the weekend at Army cadets camp and it’s been a much needed respite for us all. It has given him a break from us and the move and we have had chance to have a date night at the cinema while Moo was at work.

Him not being here has meant his ransacked room is still looking horrendous but he’s made a start to try and find a place for his stuff. This week will likely be about sorting the kids rooms but I’ve quit planning stuff as we seem to be having to prioritise things each day as we go along.

Here’s to a week of me working and out of the way while my wife has chance to get the finer things sorted with her week off

I’m also hoping she takes a break as she is seriously flagging . She’s not stopped and been lifting more than she ever thought she could.

Bye Formby, Old Friend…

Day 11: 11th June 2022

Blog-catastophe Numero Uno

[It was Day 11 that I first imagined this online blog. I was writting my blogs on facebook (which continued) but I kept having issues with glitches and my blogs would disappear.This was the first time it happened and the first of many blogs I lost and had to rewrite. I should have learned my lesson and moved onto Pages or Word and I do not know why I didn’t. I think it was something about writing from the heart, pressing upload and the words disappearing that gave me the sense of throwing the thoughts and feelings I was experiencing away. It was cathartic and therapeutic sending the words out there. What manifested though with each time a glitch happened or I lost signal and the blog didn’t upload, or I pressed delete instead of save when I was mid writing and got disturbed… whatever it was that caused the loss of my blog, it was strangely and unexpectedly really emotionally triggering! I would lose my shit and get really upset. I’d cry and scream into a pillow! What the heck was that about. I’ll never know. Here though was my first experience of losing my blog and my method to dealing with it was to bullet point the themes. That method didn’t last long though – much to my reader’s disappointment I am sure given that the blogs sometimes felt like reading chapters of a book (or so the feedback said! haha). Every time after this, I would re-write the blog in full:]

Absolutely gutted that my blog from this morning has disappeared. It was all about the way out of the house bugging me and the drive to work being amazing – basically from tractor to ship – countryside to a shipping city.

Points from day 10 that I wrote about in depth:

The ramp is dangerous and I’m slipping down it

I’m disabled but learning valuable lessons from it.

I’m disabled and have lots of coping strategies

The care system sucks.

Moving is more complicated and complex than first imagined.

We are plodding along but still not organised and unpacked

I got an expensive reed diffuser

My wife got a clock

There were lots of life lessons I wrote about this morning for me to ponder on in years to come but thanks to Facebook fuck ups I’m now gonna have to try and remember all the poignant things I rambled on about in my journey of recovery and home developments

[…and here it is, that said blogging site. Being updated 2 years after the fact in hope that in time, I will catch up with myself and be able to upload the post on here straight after my facebook post in live time].

Day 10: 10th June 2022

Strong ‘Routes’ of Recovery

Day 10 saw me back in work and the break from the chaos that is moving was appreciated. It was all about checking out the drive to work!!

When we were house hunting, we had a tick list. One high priority items on this very unique agenda was for me to have a scenic route to work. I work in a big city but prior to moving lived in a coastal village nearby. I noticed then, a big difference in how the route driving to and from work impacted my functioning and my pain management. Going from the quiet and quaint, to the hustle and bustle of busy city life was also great. I benefited from not sitting in traffic jams and having to stop in lots of traffic lights. The difference that the simple movement of stopping and starting made to my pain was evident. The physical aspect of the journey became important when I was judging pacing techniques and how to best spend the ‘functioning power’ of my pots see

Also, important for me was the drive home. Working a job where you read and discuss emotional and sometimes very dark content can impact your emotional well-being if you can’t switch off and out of it. Vicarious trauma is always a phenomena that we seek to avoid. Having a drive home is an opportunity to process this and put it to bed. Carrying the day and then being distracted by traffic on a stressful journey home makes it harder to draw a line between your professional day and your private life. A mindful and low-stress journey was an important aspect of my working day and balancing a work life balance. The last thing I want to do is bring a mind full of what I see and hear in my work day home with me – Mindful over mind full! In order to switch off, I would use the views and time of my drive to reflect and to be mindful. This was a wellbeing exercise that my wife, who is in the same profession learned early doors into her career. Using the drive home to de-compress was very helpful for her. I inherited her wisdom as I often do.

It has served me well and my new drive from our new home did not disappoint, on this my first day back! At times, as far as the eye could see was farm land and countryside. It was straight onto an A road from the driveway and we were away! There was very little traffic, very few traffic lights and stops and no sitting in traffic for ages. I loved going from the green to the urban; seeing tractors to ships crops to high risers the calm before the storm! We picked a good location! The sunshine helped but I bet the views my Drive from Wheelchair Vehicle (DFW) is gorgeous in the snow

Another important route is the entry into my home. We have not sorted this out yet. Unfortunately despite this being a top priority during our house hunting, we found only 1 house in over 50 that was accessible by wheelchair at its entrance. How bad is that!? A common issue for wheelchair users. It is not an easy fix either. I swiped passed over 200 homes on our property apps that fitted our chosen filter but would not have been easily adapted – that had a number of steps on route from the pavement to the front door for example. There is no filter for accessible entrances on these apps by the way.

I filmed my temporary route out of the house. It’s dangerous and ridiculous but won’t be changed for months. The gradient is too high for the chair and the ramp is bent on its hinge due to the way it needs to be placed meaning as I access it, it lifts up at the bottom. When I get over the bend, the gradient is that high my chair just slips down to the floor and I have no control to stop it. It’s painful as I hit the ground and a bad knock could trigger a pain storm or increase the severity and frequency of symptoms and cause the onset of others.

A pain storm for me is the acute side of my chronic condition. I explain it like asthma which is also chronic condition you can live with and manage the symptoms of. It also involves avoiding triggers like fur allergies, smoke, cold air, exercise etc. Managing them will keep your symptoms at bay. Sometimes they can’t be avoided as you don’t always have control of your environment and symptoms like wheezing or shortness of breath kicks in. You take an inhaler (I do my biopsychosocial rehabilitation and recovery) and you can quickly return to normal life. Sometimes, in asthma, when the trigger is a cold and your body is run down, those symptoms can persist and you need a course of steroids on top of your bronchodilator- same for me as my symptoms can also become prolonged – only I need different remedies and adaptations.

Sometimes (and as long as you manage your asthma well then hopefully very rarely) you have an acute attack. It comes on suddenly and it is so intense that you can’t carry on with life and need emergency treatment. That’s my pain storm. Again like asthma, a different method is needed, whether that be hospital or at home, life stops until it is over. When it is, then recovery starts and you are weakened and need to build up your lungs with steroids and avoid triggers as you’re more prone to another attack. On the worst and high level attack, it may continue and you may need to repeat that high level care for sometime – just like me when at times it has taken months of repeated and prolonged pain storms before I have started to recover. Sometimes like asthma, I bounce right back after an attack with the right care, others it’s dragged out and I’m weak and have to rebuild my mobility all over again.

Knowing this now and understanding the concept and context, it is easy to see why I have feared triggers and been so controlling of my environment knowing I’m at risk of losing everything I’ve worked for by one knock, a fall, or by pushing myself beyond my limits that day. Falling is the worst because my condition started with a collapse and I’ve experienced a number of times by body switching off and I drop to the floor or any other thing I can grab onto to prevent a fall causing a pain storm.

I’ve worked with my pain psychologist about this. She says it is me going into flight or fight. Basically entering this state of mind hundreds of times a day while the fear and thoughts she calls catastrophic thinking (seeing the worst case scenario basically) sees me living in a highly stressed state. This means my amygdala is in overdrive which effects my nervous system which triggers symptoms and irrational responses. Like, as I learned to walk again we noticed I walk differently outside my own home because of this fear aspect to my recovery.

I noticed that when I was trying to start to walk outside again with my walker that I was in more pain and began experiencing more neurological symptoms as I took each step. It really confused me and I thought I was crazy! It was not until we understood the flight or fight response that I understood it as an irrational fear response. I fear falling outside more than in the confines of my home. I was not always conscious of the fear but my body was. It protects me and sends pain signals and symptoms. When intensely over stimulated by the flight or fight, my brain will switch off a limb (like when I collapsed) or go into neurological overdrive. The very thing I’m fearing is therefore more likely to happen if I’m afraid!! This concept blew my mind but eventually with solution focussed therapy from my amazing psychologist and months of rehabilitation. I reprogrammed these responses!

Sometimes I can’t control it but it is not taking over my life as much and when I am aware of it, I can respond using the tools I have built up. Another example of how to understand the physical response to the stress response is when my wife tells me to drop my shoulders as I am reacting to pain by clenching and tensing up and holding myself tense- a natural but more devastating response. I’m more likely to trigger a spasm of any muscle in my body when I hold my body stiffly. The natural response to brace is harmful to me. I cannot tense up in response to pain. This is because my body takes it to the next level and before I know it my tense body that has quite rightly reacted to the pain signals my sensitised nerve system software has detected, triggers an overreactive response. For me, that might be spasms, contracting abdominal muscles like labour, twitching, ticking, jarring, and my personal favourite pulling my ankle in like it is going to snap it! These responses are not just limited to my muscles, they happen in my organs too. Ever had an anxious poo??- same concept! Unfortunately, these symptoms can be seriously debilitating especially in big muscles like in the back and limbs-my bowel can spasm so significantly, it keels me over in pain, it causes IBS symptoms and because of the repeating nature over time, I also have malabsorption because my bowels do not work right anymore. There is a secondary impact.

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So, with that all in mind, taking a dangerous ramp each day can have devastating impacts not only as a trigger to the chronic symptoms I have but if I take a bad knock, I am risking an acute response. I am also impacted by the stress of using the ramp and the fear of the action itself. It’s very complicated and imagine having to explain it to occupational therapists who are not trained in neurology or pain psychology. I think they think I am neurotic and controlling when I call saying I really need an accessible entrance but I’m risking losing all the hard work of other professionals and myself to have me functioning to the degree I am if I were to trigger a acute pain storm or increase my chronic symptoms. The loss my family incurs when I am less mobile ARE catastrophic and the impact on my life is too. I lose everything I have worked so hard for.

I have been phoning the local authority since April asking for the assessment required prior to me being able to apply for adaptations to the house. I explained the need for this to be considered urgent as we were moving in May and once in the property would not be able to come and go from the building safely. I was advised to buy a suitcase ramp by a manager after I’d asked to speak to one following some passing about between the local authority I was leaving to the one I was moving into.

So, I take the suitcase ramp route without fear and trying to relax into it. I don’t tense up and I go with it. I don’t think, “What if I get a knock or think about the time s boy on heeleys crashed into the side of my wheelchair and the knock causing me to lose the whole of May 2013 and a bit of June that year/ trapped on a bed with paralysis and pain, not functioning, having my bowel manually evacuated (don’t ask or google that one) and a catheter tearing up my bladder and urethra. No, I just think of England and enjoy the ride down that dangerous ramp! Clear my mind of the catastrophic thoughts and anxiety, try not to be re-traumatised by the potential of another catastrophic loss… and I plod on! So far, do good and I got to work!

I don’t dwell on the fact that I can’t leave my home independently or in an emergency. The dangerous thinking this could lead to in itself could be a psychological tigger for symptoms. Rather, we plan meticulously so there’s someone about when I need to get out and about and we have the fire service round for an alternative evacuation plan to be put in place. I use an alternate route to the driveway due to little steps on the path making it inaccessible and go out onto the street to come back in the other drive. People in their cars stopped at the lights probably thinking I’m crazy and certainly watching with puzzled looks on their faces as I suddenly appear from one side of the property only to disappear on the other side!

These are things most people don’t have to deal with when moving home. The difficulty and challenges for us that are centred around my disability completely go over the heads of most. They have no idea. They just see the end result- me wherever I’m supposed to be and they’re completely unaware of the planning and challenges that came before. We laugh about it and understand the majority ignorance of not having a clue about disability comes from a lack of awareness not usually a wilful bigotry. Some people try to be understanding, a small few totally get why I sometimes turn up looking worn out or late. Kerbs and thresholds are my enemy and taking the long way around is the story of my life

I write blogs about disability in the hope of the majority learning and understanding the barriers that they will likely never face. The adaptions and adjustments that are required to do the simplest thing like leaving the house and jumping in the car might be appreciated one day

We don’t want pity, we want understanding and reasonable adjustments so we can function like you, that’s all Accessibility matters!

I am conscious that these blogs about moving house and developing this property is riddled with disability issues but so is my life! It is a thread running through every aspect of mine and my families’ existence. It, of course, was always gonna be a part of this writing-experience!

Nevertheless, there are hopefully relatable aspects to our experience that others might be familiar with and if nothing else, if it helps one other person who also has barriers in their life or who faces challenges (all of us right?) to ‘take the bull by the horns’ and plod on towards whatever your dream is, then the waffle and side step from the core content of renovating is worth it for me

One hopefully relatable experiences of day 10 was coming home to presents from hard working delivery guys who I like to think of as Santa’s of the normal day! My wife’s big clock has arrived and my very expensive reed diffuser was here ready to be opened and admired! I have a couple more items to get (my lamp and a piece of wall art) and then the living room is liveable for the next 3 years! It will be the place we plan and design our future. Our little hub of ideas and big dreams! Exciting

Day 9: 9th June 2022

bR&R Pots

Very productive day 9! I was pretty mobile which always makes life easier. I got to work on putting the picture frames of our memory wall up. It took a lot of standing up. I am always so thankful to have the ability to do this after so many years of not being able to weight-bear.

The most productive job of the day was that we cleared enough boxes for the bookcases to be moved in and we have started to unpack the library! I love my books and find comfort in them being around me. I am not going to unpick why this is the case but I think it has something to do with the power of language. I am attracted to this type of power. Power is wholly subjective. I recognise the potential power of the written word. It is quite a deep concept I guess but there is something about the humanity in stories that ignites feelings and provokes emotions. I find writing and reading therapeutic. I like the permanence of the written word. Thoughts are fleeting and lost in the ether while the written word can linger enough to be reflected upon later. I like that. This diary is proving that writing is a really good strategy to stay focussed and pouring out thoughts can be helpful when circumstances can be overwhelming.

It’s amazing how some books and pictures on the walls can make a house feel more like a home. I am slowly beginning to believe that we can live with this place for the 3 years development schedule quite comfortably. It’s so weird; I have 2 pictures in my head when I look around. The home we are temporarily making out of each room and the future plans for these rooms overlaying this. I can see both as I look around. Visualisation comes easy to me. I am a dreamer. The dichotomous nature of this bi-visual ability is giving me comfort and hope rather than facing the reality of the work to be done. All I could see originally was the knocking down of walls and the end goal but now I can see the present home too – temporary as it is. Being in the moment is as important as dreaming about the future.

One temporary problem for the here and now is getting the kids to school. It is a logistical nightmare from here but we are still collecting the odd load of garage and garden items for now so it feels productive to drive over for now. My mum and dad are helping and Moo has begun to use the bus and train as she gets used to the route. Today, they are both going to school using public transport which will relieve some pressure.

It’s my first day back at work and I’ll have to go into the office which is a bit anxiety provoking as we are still working on an evacuation plan for me so I can’t actually leave if there was an emergency. We have no WiFi at home though and I don’t think the hotspot will be good enough. There seems to be a void of 3G in the area. My job is very fast paced and a dodgy internet connection would be devastating to my workload and my state of mind. I love being around my team and being in the city so I’m hoping that will balance out my fear of burning alive at my desk.

My wife is going to drive me in. Sitting at the desk in my chair for a full day is really neuro-symptom-triggering. When I’m at home I can stop work and head to the couch for a bit either as a comfort break or if I unhook wires, I can work from there. This change in posture and positioning is part of my pain management. At home, I also have the opportunity to lie down during my dinner break. Not having options like that make for a more painful day so if we remove the driving from it it will help me get through.

The way this phenomenon of pain management has been described to me is that I have a pot of functioning. Picture a pot of gold or honey filled with potential functioning – movement, energy, tasks, etc. Each day (due to the changeable nature of my conditions) I am given a different sized pot. Whenever I move or do something physical I use a little of my functioning from the pot. Each activity needs a different amount of functioning to be poured out and when it’s gone it’s gone. The more tasking the activity the more functioning I use up.

Like petrol in a car, when there’s less in the pot it’s more difficult to run and less efficient- hence why in evenings I am usually less functioning. This, of course, is unless I have not used up a lot through the day – so if I have something on in the evenings I need to conserve through the day- get it? I conserve by pacing – another practice included in Biopsychosocial Rehabilitation and Recovery (bR&R).

The good thing about the different bR&R strategies is that some allow me refills on my pot! Actually, if I am committed and prioritise my practices (like mindfulness, meditation, relaxation therapies, rehab, psychological strategies, the right physio – because this can go either way: fill my pot or empty it…gotta be careful here), and most of all manage stress – as this puts me in flight or fight which actually causes symptoms in my nervous system) then I can live life well.

Doing all of these strategies pours into my pot and when practiced well over time gives me bigger pots for the day!

Triggers can tip or completely knock over my pot. Avoid them at all costs. Stress is a big trigger, knocks and bangs is another, going beyond my mobility limits that day is another (one I struggle with sometimes but understanding Boom and Busy Cycles helps me manage this).

Today, I totally went all out pouring so much out filling the books into my he bookcases but it was totally worth it even if it did mean us not going the cinema as planned and an evening flat on my back on the couch. I needed the job done for my sanity so sometimes you’ve gotta take the hit and the empty pot for what you want .

What is important to remember about your bR&R pot is that measuring your flow in and out differs depending on the colour of your day. I won’t go into this yet but imagine good and bad days for simplicity – on a bad one activity might cost you much more flow than the same activity on a good day.

So my wife is driving me to work so I’m not using my functioning pot too much in order for me to be able to stay in my chair all day without a comfort break. Once I build up my pot and don’t have as much physically going on besides the pain induced sitting in my wheelchair, I’ll be able to drive myself home.

My wife is off work today. We have a tag team thing going on trying to keep the momentum of renovating while working full time. I’m looking forward to seeing her progress in the house today and looking forward to a break away from it all while I am in work.

Day 9 was also all about our new toys. Bathmat for me and hoover for the wife I steamed the floor in the bathroom (for the 4th time -driven by my infection-prone self trying to avoid getting ill during this important time) and laid my mat down in victory once I got it clean. We are going to be working on that room first with a new accessible shower for me. The end game will be a fancy bathroom with a circular bath / – they are pretty cool! For now we just need the shower doing and I could really do with new tiles. These we have inherited when buying the house are not my taste at all. We’ll see what extra work the wife gets as she takes on a second job and see if we can afford the full shebang.

My wife is made up with the Dyson because it is light enough for her plus I can use it without pouring too much out of my pot. Money well spent!

The memory wall is nearly done and office/library hallway thingymebob room started! Not a bad Day 9 if you ask me! Feeling accomplished lots done in my 9 days off work too.

Also found one of my favourite childhood books and had a giggle reading it – Moving day! It certainly bore some resemblance to our life. “Where’s Robert” was “Where’s Dee” (who kept going on WiFi and 4G hunts in the middle of moving). Our movers did not end up in a bath together like in my story but I guarantee there would have been a full hot tub of bodies if we had managed to get it up that day! Sore muscles and bruises all around made for a need for a soak.

Day 8: 8th June 2022

Dream BIG!

As we move into our second week of our project, I am reminded of the journey it took to get here.

Houses are not built ‘wheelchair friendly’. Simple.

When I collapsed in 2012, we lived in what we considered a stop gap. We had felt we needed to move quickly fleeing the aftermath of my separation and a toxic environment for the children. We found a property that felt perfect. It was freshly renovated and although it meant driving the children to school instead of walking, it was close enough to our support network and in an area that I knew and which had sentimental value.

We decided to move that morning and began looking. We had chosen a place, viewed it, put a deposit down – through the grace of generous loans from relatives – and had confirmation by the end of the working day that the place was ours. Some may call it luck. I did at the time. Now, in hindsight and having a very different experience, I see the privilege I had as a non-disabled individual.

We lived in that property for 2 years. It was perfect for us when we moved in with it’s freshly plastered walls and newly laid carpets. It felt synonymous with our new beginning and it gave us hope that we could take stock and decide where we wanted to be longer term. We moved in the October of 2011 and by January 2012, I was in a nursing home with all our dreams for the future feeling shattered and beyond reach.

Our plan was to both become financially stable again and buy a home together and our wish list were features such as a dining room for me and a downstairs loo – because that felt posh to us both as neither of us had one in the homes we owned. I had owned a 2 up 2 down ex-council house through the Right to Buy scheme. My ex-husband and I had extended up into the attic but we had no dining room and no money to extend the ground floor. I dreamed of doing so and would sit in my cramped kitchen/diner renovating the house in my head. I pictured Christmases where we could sit around a table that was pushing us up against a kitchen work top. In that house at Christmas, I could feel the burning heat of the oven on my back as I pulled crackers with the kids and hid the dizziness I felt as I ate next to the hob still cooking the next course.

A dining room was my dream. My (now) wife had similar levels of wishes. 2 non-disabled people dreaming of moving up in the world. Oh simple times! Boy, did our needs and wishes change. When I returned home from the nursing home, we quickly realised that I could not get over the threshold of the house. The paramedics delivering me home on a stretcher just lifted me over but how would I get back out?

Then we realised that the wheelchair I was sent home with filled the downstairs toilet. The wheels scraped the skirting boards on both sides leaving no room for anyone to walk around or lift me off it. I wasn’t physically able to sit up in the wheelchair yet anyway and I was having to have my bowels manually evacuated but we began to see more and more physical barriers with our new perspective as I began my road to recovery. The home would need adapting but it was not ours and there were clearly issues that could not be easily remedied. How would we extend the bathroom? Walls would need to come down.

For lots of reasons, we eventually moved but mainly as I needed a downstairs bedroom and a home with less physical barriers. We looked in our area for an adapted home without a raised threshold, with an accessible downstairs bathroom, and a downstairs bedroom. This was our list: 3 vital things. We had been offered to be put on the waiting list for social housing but told that this would just be for me as there were no accessible properties in our local authority that also accommodated 4 children. There was a whole array of housing situations available but none for a parent with disabilities to live with their 4 young children. I was shocked and appalled and was told that accessible social housing was aimed at accommodating older people whose children were grown.

We begrudgingly increased our search area to a 50 mile radius from my parents home and still nothing. We resigned to just having a place where there was a bedroom downstairs as no property could offer us the 3 things on our list. I was given a hospital bed rather than a mattress sat on top of our couch like in the last house and finally got some privacy during catheter care and manual bowel evacuations.

Then as I continued to recover, and after proving myself worthy, I got an electric wheelchair. Oh, the independence!…as long as someone got me from the bed (not a problem, I had a gantry hoist), then into my manual wheelchair (which fit through a standard internal door width), once pushed into the hall a banana board and 2 people would support me to swop wheelchairs, and then, oh then, I could have some control over where I went (outside only of course as the house was not accessible – not one room could be accessed from the hall in the electric wheelchair)! The outside world was my oyster – until I came across a kerb of course, or a car parked on the pavement, or a roadworks sign strategically placed, a wheely bin taking up the pavement, a narrow pavement, a cobbled street, sand, mud… you get my drift! Despite the barriers I came across, just being one my own was now a novelty. Life was on the up.

Once again our needs and wish list expanded but unfortunately the doorways didn’t. The landlord refused to allow is to adapt the home. After feeling the freedom that my new wheelchair brought me outside of the house and in accessible buildings, it was so hard to come home and be back in a manual wheelchair and reliant on the good will of carers, my children, or anyone that would agree to push me into and around other rooms in my home and place me in a position where I would have to stay until they came back. It was so hard to know I could move about and enjoy independence if only I had a different environment.

We moved again. The landlord was selling up. This time we will be sure to look at the doorways. Open plan spaces would be best to allow me some freedom. Again, we looked for ages. No one-day-turnover like our first move and now we knew we needed to cast the net far and wide. We had more experience of physical barriers and what we could achieve if we overcame them. We knew that unlike in our first move, when we had hundreds of homes to choose from, we were now very limited.

We found a place with double doors into a dining room. I could make that a bedroom. There were 2 bedrooms downstairs but the internal door widths meant I would need to go through the rigmarole of the double transfer from bed to manual wheelchair to electric wheelchair. When each transfer is painful, symptom inducing, and time consuming, less is more! With a bathroom big enough to preform a transfer, I could finally do my business in a real toilet again instead of a commode (which I’d upgraded from a disposable sheet on the bed sometime in the last house) but it took 2 people and 4 transfers, and everything I had to take the induced pain and symptoms just to use the loo. I was still catheterised at this point so it was only a single ticket a day needed most days. I would transfer onto the low toilet with my banana board which was okay going down – like a slide – but getting back up was such hard work! The ability to flush after a poop was worth all that hassle! Having someone remove a bowl of excrement from your bedroom may be better than removing it from your colon with their hand and a step up from manual evacuations but to have the privilege to ask them to flush the chain while you are sat there hiding your business is a whole new world! This house was amazing for that alone. I dreamed of a day no one had to smell my shit.

There was also a big living space for me to whizz around in and after a while the landlord even allowed adaptations. On a good day my mobility increased thanks to my newfound opportunities to recover now I had a more accessible home. After the adaptations I got a toilet that was the same height as my electric wheelchair and the door to the bathroom was widened to wheelchair accessible specifications. I could enter the bathroom alone and soon (with practice) use the banana board to transfer myself. There I was taking myself off to the toilet independently. It was a dream! The toilet installed even took away the need for a carer to wipe my ass! The whole experience was mindblowingly freeing! I longed for good days when my toileting was independent and it pushed me on in my recovery. There’s nothing like embarrassment as a motivator to recover.

When inevitably this landlord told us he was also selling up after we and the local authority between us had spent around £40,000 making the house accessible, we knew we needed to buy our next home. We were now experts in my needs having lived and breathed the disabled experience for a decade. Our net was cast once more. We saw over 50 houses both in person and through apps. Virtual tours, in-person tours; most with me sat outside or on the stairs while my wife got a tour and I worked out whether the place could be adapted.

We gave up when we hit the 50th house. We started making plans to move in with parents temporarily and for me to once again be trapped in one room and reliant on the good will of my fellow occupants to push me around through the standard size internal doors on my manual wheelchair again. We would need time and money to find a forever home.

Then this little beauty came up. Sent by the universe and powers that be, no doubt. Our very long and unique wish list ticked; every box! It was adaptable!

And so, Project: Mama wants a balcony began! We are one week in and we have a plan. Our accessible dream house is in reach. I am sat in it, actually right now I am trapped in it. Lifted in, my chair lifted through on a suitcase ramp and with lots of muscle. It’s June and we let the local authority know in April that we would need an assessment for a ramp at the front. We are pushing them as now I have come full circle and am back trapped in one room, the hallway. Our hopes that they would step up and transfer my care and complete an assessment before we had to give up the last house dashed. As far as I have come in a decade, the environment still disables me. The difference being is that we are now experts in breaking down disabling physical barriers and we will not stop until we have a home were I can live independently. It’s gonna be a bumpy ride but we have got this!

Day 7: 7th June 2022

What’s That Noise?

Well that’s the first week over. I reckon we need 3 more trips of van loading and transporting. There is: all garden stuff to bring over; 2 tip runs to do; and some cleaning. Then, we can close the doors for good on what was – we thought – our forever home and get some closure. One lesson learned is never say forever when it comes to homes as we just don’t know what life is going to through our way. Having said that, we will be hoping that this purchase will be the last we make and that we can grow old in this accessible dream house – once we have built it of course!

Wednesday is reflection day and the day we review our finances and see what we can afford to put in our pot. With the financial burden of the move showing on our credit card, it wouldn’t make financial sense not to prioritise our funds there but in the same token, we need to see that pot building for our own sanity so 200 quid in the kitty, it is! We will not be doing any food shopping this week as we are reducing 2 fridge freezers and a chest freezer into our one large fridge freezer so other than bread, milk, eggs and sandwich fillers for the kids lunches, we are making a saving on shopping to make ends meet. It will be difficult but doable!  I can’t write the payment in my planner as it is lost in the mountain of boxes throughout the house 

This house is floor to ceiling boxes but last night all 4 of us managed to stay over for the first time with Moo on her own mattress on the floor in what would be our bedroom (eventually planned to a snug in 3 years). Dee’s room is coming along. I wanted it finished yesterday so he can settle in but we needed to make use of the van while we had it because my wife could be using it for work now on any given day.

We did 3 runs of house moving and a a big tip run. We sorted the garage into keeping and throwing and dug up my favourite palm tree to bring with us. I’ve got a couple of other plants that I’ve worked hard to plant and grow so hopefully we’ll get chance today to get them too. We also have a tonne of compost on the drive that we want to bring and have been filling tubs with it as we have gone along. We have also kept a substantial amount of wood to bring for a log burner we want installing in the house to cut down bills. We have a decrepit old lean-to against the garage in the new house which will be knocked down in 3 years but for now will make a good log store to dry the wood out. It has been cut and stored outside for a couple of years already but needs some time away from the weather to meet the standards for a dual fuel burner.

Yesterday was the longest school run ever. We had to collect the kids from my parents which is now a grand total of 24 miles away. They have given us a mattress for Dee – he goes through them like wild fire. We have dropped it off at the new house and then headed to out old village to drop the kids off at school. Dee only has to attend for his exams now and then we are planning on saving for a scooter for Moo to get her back and forth to 6th form for the end of this term and next year. She also works in our old village so will need to commute until she can find something nearer. Ideally, we wanted to wait until she was finished her A’levels before we moved but that would have meant Dee commenting for college and it was the lesser of 2 evils to do it this way. She’s more resilient and sensible. Dee would struggle with the journey each morning and need supervision.

I’m losing momentum now if I’m honest. I have come down with an awful infection and it’s a sign I’m run down. I need to rein it in a bit. I need to step up my rehab and reduce stress. It’s so hard when everyone is on their last nerve and the kids are trying to manage getting back to real life after half term in all this chaos. They are both understandably ratty and argumentative under the pressure and are making things even more difficult. I totally get it. They are stressed and their lives have been turned inside out but it’s not okay and we need to support them to prioritise all their needs and keep them ticking over. Moo has had a big week in school delivering assemblies and she wants to apply for head girl next year, she’s on the school council and in Inclusion Club working tirelessly to make the school a more inclusive environment. She is really committed to her studies and in developing her personal statement for Uni. She wants to go to Scotland or London. Having no WiFi is not helping her.

Dee is in the middle of his exams and if we could have helped it we would have waited for him to finish but we were given an ultimatum that the vendors would pull out if we didn’t complete sale on the 31st of May. We cannot afford to keep paying for both houses for very long so unfortunately it was now or never.

The collective family mood is low as it is coming up to the 1st anniversary of my mother-in-law’s death. I am mindful of the impact of this on my wife. She is the most resilient person I know and has managed her grief incredibly using the Kubler-Ross cycle but this next week will be very hard for her. I’m not sure if moving is a welcomed distraction or an added stress- probably both. She wanted to be with her brothers and moving had put a spanner in the works of their plans. I’m gutted for them and think it would do her good to get away with them and spend some quality sibling time together. She doesn’t want to leave us here which then makes me feel guilty. We need to manage these feelings well or it will be a recipe for disaster. Grief and the emotional impact of it can be devastating to lives and relationships. Managing grief is hard and it can easily consume you. Juggling supporting my wife in these circumstances is gonna be difficult and actually coping with her grief in these circumstances first hand could easily be overwhelming for her experiencing her loss first hand and juggling a load of spinning plates. She’ll need support and TLC in the week ahead while we celebrate her mum’s life knowing she would have been so happy for us about the move and seeing my brother-in-law looking out for us and spending time with us.

Wednesdays will be a day for reflection on the week but also be a reminder to dedicate some time to plans for the week ahead. Juggling life and all it’s challenges and ups and downs while staying focussed on a goal is not easy but if we keep conscious of the potential impacts, reflect, and use the strategies and skills we have developed through our previous challenges then I’m confident we can plod along towards our accessible dream house.

Biggest news of the week is that my wife got a 1st in her assignment in her masters degree (how the hell she pulled that out of the bag under the circumstances of packing and planning is beyond me! She is the most amazing person on this planet!); Moo got an A* in her homework (thank goodness because we were worried her grades may drop with all the chaos- she’d be gutted so we are made up for her); Boo has COVID (!!) all alone in London so I’m considering picking her up wearing PPE and giving her our bedroom (she will make the decision about what she needs). We can’t make that child do anything! She’s powerful and determined! Sh is currently thriving and saving for a halls of residence with a pool next year – she knows to stop and recover though. She is sending me texts that she is alive. Mainly because I have a tendency to panic especially since her uncle passed away from COVID and my dad was hit hard with it. As a result, we are all very aware of it’s potential. She assures me she’s doing okay but mothers instinct is kicking in and I want to be with her!

On top of that list, my wife is starting her second job having been offered some work! I’m gonna need to stay functioning so my care needs stay reduced to allow her time to do the extra work. It’ll mean me staying very focussed on my biopsychosocial rehab and recovery in the midst of the chaos. I will need to protect myself from stress which is a major trigger for my symptoms – that’s almost laughable in the circumstances but I’m determined to fight the flare up!! 

Next week is unpacking and starting to focus on this house. Saying goodbye to our old home and the life we’ve known for the past 6 years. I’m looking forward to no sand in the car- we lived in a coastal village. Our house was very close to the beach so sand has been on our skin and all over our stuff for as long as I can remember. The ground was and it would get in everything including my wheelchair! Man, I’ll miss living at the seaside and next to the pinewoods but I won’t miss the mud and sand in my chair and know I’ll find the good in living here! There’s pro and cons of living anywhere and it’s about finding a place that is weighted on the plus side for you. We are all so different in what we like and what makes us happy so I guess it is about getting your tick list, making it specific to you and what you want, and working hard for it. This includes battling the challenges and barriers that get in your way. I’ve found being patient is the key, success takes times, dreams take time. My problem is I struggle with the patience  I’m a work in progress just like this little plot of land in the big wide world that we have so many hopes and dreams for.

Here’s to Week 2 of the madness that is moving. Anyone out there who has any wishes they send our way for Friday when I’m back in work please be kind and forward them psychically to us! Not sure how I’ll cope. Holding down a job literally takes everything I’ve got  I’m worried but hopeful adrenaline and sheer stubbornness will get me through 

https://www.psycom.net/stages-of-grief

Day 6: 6th June 2022

In Search of Inspiration

Day 6 also saw my wife having to return back to work and chasing WiFi as the little box sent by BT is very unreliable especially when a certain teenager pinches the plug to charge his phone leaving us all wondering why the little intermittent internet connection we have been surviving on for the past few days is now none existent again! 

Moo stayed at my mum’s (her Nonnie’s) to revise and prepare for another assembly she is delivering on inclusion – she’s her mother’s daughter and teaches me a thing or two about the very subject that I instilled in them growing up. I am passionate about equality, diversity and inclusion and I am very proud that she seems to have a spark in her belly for fairness and social justice too.

We have had Jay stay over for an extra pair of hands and been concentrating on getting Dee’s room. Dee has ASD and ADHD. He lives well with lots of support to navigate a neurotypical world but masks his neurodiversity. Moving is hard on him. Dee needs stability more than us all and he’s not doing well right now with all the changes. It’s hard to keep patient when you’re 6 days in and he’s exhibiting behaviours that can grate on the most laid back, tolerant person. He has outbursts that can be stressful on him and others but we know this will settle in time. Despite his struggles, he did step up today after phone-removal threat 21 and finish building his wardrobes. Parents of children who live with ASD and ADHD will know it’s difficult to decide whether outbursts are responses to environmental triggers or plain old trying to push boundaries and more typical teenage exertion of control. Today we had both, I reckon, but we have his back and we will help him settle in.

We have all chucked in to get his wardrobes finished and with them all built, I’m hopeful other than his new desk, he is nearly done. His desk is one he is renewing by sanding and painting one he was given by parents. We will have his room done tonight. (Note to self – buy him grey curtains!)

Mum came up and helped with the kitchen and other than a huge pile of garage stuff on the breakfast bar, it is organised now and cleaned (again – it keeps getting clean and organised and then wrecked again). We just need a strip of unpainted ceiling painting where my brother changed the light fitting for us. He has taken off a fluorescent strip as they are not energy efficient apparently and we have £33,000 to save for renovation this year so every penny counts.

Speaking of every penny counts, in an effort to save some cash, we started growing some food this year. We’ve always grown herbs and my dad always puts a crop of potatoes and tomatoes in our garden when he does his own. This year, we saw some cheap seeds in Home Bargains and thought we would give them a try. This plot of land we have bought, came with a greenhouse so we’ve put the crop in there and they are coming on a treat. It’s the only outbuilding we have not sorted out. There’s some tables in there that I think I am going to fix up when we get a chance with the aim of growing all the plants in pots that I can reach. I would like raised beds eventually.

I would love rendered breeze block walls and planters like this (see pics) and my house design book (see Day 1) has an outside section so when I get a minute (and an office set up with my printer, I’m gonna be finishing my designs for a patio area we were hoping to have the money for come September. The move had some major hidden costs that hit us hard so we are on the back foot of it and may need to wait until next spring to make a start on patio building but let’s see how we go.

My wife and I are very dedicated to keeping ourselves mentally healthy. With stress being a trigger for pain and symptoms – for us both actually (my wife has fibromyalgia), it is super important for us to manage stress and our mental health well. Being outside in nature is one of our ways to do this. Mindfulness is part of my Biopsychosocial Rehabilitation and Recovery and the outdoors is great for that. It’s important we prioritise a space for us to be. A patio is high in priority.

One of the biggest challenges we are finding is figuring out what to spend money and what to not. We need to consider what is absolutely necessary now and what can wait. It is important to us not take money out of our budget which might chance delaying the big development in 3 years. We are thinking about what we can live with that won’t impact our mental health and what will absolutely grind on us or impact the environment so much that it could create a physical barrier to my independent living. These choices are cropping up daily. The building of a patio area, for us, we think is essential so if we design the full garden and then just do the patio bit for now, that might work.

The issue is when you start a job like that there’s always something else that is impacted. Like for instance: I’d need a section of the back wall doing now to butt the flags up against. Do we just do the whole back wall or live with a part of it done? That would mean we would have a section of our future forever home complete inside but in the middle of the mess that is the original plot?! It’s a tough one. If we are doing the whole wall, we will defo have to wait until finances allow it next year- decisions, decisions!

Day 6 was also the day for my Occupational Therapy assessment with our new local authority to see what aids and adaptations I need in the new house. As we have crossed local authority borders (even though we have not moved far) I need to give all my equipment back and get new stuff. It doesn’t make financial sense on a macro scale but as these budgets are matter local government, I have to send back perfectly working aids and be reassessed. I wonder if decision makers think about the impact the time-gap created in between when I have no aids?

We have had to fight to get an appointment. We have spent hours passing messages between local authorities who do not appear to have working policies and procedures for transfers of care! It’s really ridiculous! It has caused drift and delay for me and I’m on a waiting list now which is months long. How I am going to cope without my aids is a real serious matter? It will disable me substantially and remove my independence. Change is needed! The Care Act was supposed to deal with this but obviously – like other things – it’s not being applied. How people without a voice manage these things is beyond me. It’s a sad state of affairs, in my view.

My biggest personal achievement today was in removing a sticker from the dishwasher left for us by our vendors. It is no where near as posh as my one in our last home but that one doesn’t fit in the gap in our inherited kitchen so we will have to sell it or leave it. The top drawer of mine lifts up to 3 different heights and the grates that the dishes sit into are all interchangeable. This one is bog standard and has no gizmos. I am a bit gutted to be downsizing. It’s such a first world problem but it mattered to me and I had to work through the loss like a privileged, stuck up snob. I have a dishwasher and should be grateful but I miss being able to wash my drinks dispenser and big drinks bottles! Now I have to wash them BY HAND – in the words of Peter Kay. I do have to play the disability card here (I hate that term). It’s really hard to use a sink from a wheelchair and sometimes when my mobility is lower, it’s impossible because I can’t reach forward to turn the tap on. I will sometimes have to rely on someone else to wash the stuff I’ve been independently taking care of with the help of my lovely dishwasher. Each time I have to ask someone to do something after not being able to breakdown the physical barrier with aids and adaptations, it chips away at my emotional well-being. Independence is taken for granted. It’s so important for your self-esteem. I’m going to have to watch this for getting me down and work against it.

On the plus side, the big, blue ”ring now for your guarantee” sticker which was decomposing on the door of this dishwasher is now no more! I used some bleach to clean it which broke down the top layer into tiny blue particles that spread everywhere (whoops) and which I quickly tried to get rid of before the wife got mad at the mess. Then, I used the hand sanitiser (with a high alcohol content) to get off the sticky glue layer underneath. Elbow grease driven by panic that we’d be left with a huge cracked and perhaps more unsightly patch than the original sticker kept me scrubbing. Now you wouldn’t know it was there! Go me!

Just a side note: I’m finding writing these blogs first thing in the morning, very therapeutic. I’ve watched the sun come up through the window this morning. The view is lovely here and the place is growing on me and feeling more like home () sitting with the birds  (noisy buggers)  is good therapy too!

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Day 5: 5th June 2022

Living in a Box

Day 5 sees us return to our old home to organise the other half of our lives left behind in boxes despite the first half that’s been shipped over already filling the new house to the brim! I’ve no idea how we will fit it all in. The wife says it’s because we have 2 rooms in the new house that are currently empty while they are being cleaned and worked on. We’ll see.

I had visions of being moved in by now and my posts being centred around our plans for development and an array of before and after pics carefully edited with notations but here I am paying for 2 houses and sleeping over at my parents as we have nowhere worthy of living right now  just 2 houses of horrors facing us and long weary posts about life and the madness of moving!! 

Life in boxes…

We also finally have a Living Room

The last few days while we have been moving boxes, we have also had some dust angels working for us to sand and vanish the flooring in the living room. This room, the hall, and kitchen will eventually be one big open living space leaving me free to whizz around in my wheelchair and access all areas – a living space, accessible breakfast bar, and an accessible kitchen. So, right from the start, we wanted to spend as little as possible to make these spaces functional and bearable until we start knocking walls down. We couldn’t live with the floor as it was so damaged but the wallpaper and blinds were in good nick. Between my wife, my brother-in-law and his partner and my ex-husband’s sister, they have sanded every inch of it by hand and by machine before finishing it with a nice varnish. Talk about blended family group effort.

The aim of the game was to have somewhere nice to sit and relax while the rest of the house is a tip. Mission accomplished.

Day 4: 4th June 2022

Moving Day

Day 4 revealed to us 2 things-

1) Our support network is strong  and when I say this, I mean that we have thee most amazing and generous people around us and 2) these guys have some muscles between them!! 

Thank you so much to my mum and dad who are still giving it large despite the longevity of this quest to get us moved in! 

Thank you so much to the Core family who we are always grateful to have in our lives but never more than yesterday after a mixture of cleaning, lifting, driving and refreshment control.

Thank you so much to Scott and Lara for both working their butts off also…only to be coming back for a second helping of moving day tomorrow.
Thank you so much to our friends Philippa and Taya who got more than they bargained for who – like all of the above – got a mixture of flexing their DIY, domestic, and weightlifting talents. Taking Moo to work turned out to be a tour between our past and future areas rolled into one! Taya, I’ll think of you whenever I see my sparkly porch!

Dee, I am told also stepped up his game yesterday. Well done, son! We might get through this without killing each other! Our fine mix of Dee’s ASD and ADHD behaviours alongside our weary minds and bodies weakened by impairments and fatigue make for intolerant interactions. I’ll try and be more patient and please try and not push me over the edge of sanity- it doesn’t take much in the best of circumstances 

I should also give my good friend Nic a mention who allowed my worn out wife and myself to land on her doorstep tired and hungry, begging for a meal and somewhere to sit after we now have 2 houses that are both inhabitable. Thanks for the feed my old friend.

This little diary is being written to help us look back at the hard work and see how far we will have come and to remind us of the work we put into living our dream. The thank yous (which won’t mean much to you the reader) is to ensure I remember the phenomenal generosity of our support network (if you don’t have one, I’d recommend building one).

I did not expect that we would need to call on our most dearest for so much help so early doors. We are gonna owe some favours after this week! We have been reminded already about the love and support we have around us and how grateful we are. I’d say we are lucky but it’s not luck that gives us our blended family with a diverse mixture of blood and otherwise coming together in a spider-web of relatives. I am super proud.

When it comes to friendship, there’s no luck in that either. It’s about choosing people to join the blended magic that is our family. We have made good choices: People who are good for the soul.

If I remember just on things when I read these blogs back, it will be that we had the best kind of people around us today that I would want to be with us in our dream house for celebrations galore for years to come! Making memories and madness always!

Now the soppy stuff is out of the way. Having seen our people lifting and carrying all our worldly goods, I must say we seriously need to think about our materialistic ways! I was proper embarrassed  there’s just so much stuff accumulated over the years that’s been boxed and stored with good intention. I must say my hoarder side was well and truly out of the bag yesterday. I stood to face it in all its strangeness and contemplate a bizarre need I seem to have for stuff- all kinds of stuff!

I saw on the shocked faces of our loved ones and through their sweat and tears as they heaved our life’s work of collecting shite, that we have way too much in the way of belongings. It is time to sort that out! We can’t take it to the grave and I defo don’t want to be having to store it all somewhere in 3 years when the big development starts. We are storing my adult children, Jay and Boo’s belongings while they’re in Uni but that is no excuse and is a drop in the ocean of boxes of all sorts weighing us down.

It has made me reflect on our life choices and why it is that some humans are such consumers of materialistic madness and why, like in our case, we struggle to let go of things when we stop using them.

I’d like to think it’s because we have lived enriched lives full of fantastic Christmases and other celebratory occasions in receipt of gifts from a wide circle and then we have also worked hard to have nice things. But, other people have that with out having boxes coming out of their ears!

My wife says it is because our life is in boxes right now and when we unpack and put our things away it won’t seem so overwhelming and intense but I’m seriously rethinking my life choices!! I think I want a simpler and lighter life. I don’t need ‘stuff’ to feel safe and comfortable. I don’t need to own as much anymore.

I agree, it is also a reflection of how well we have looked after our things as some people who live with less do so because they don’t look after things well. Others just don’t or can’t purchase much. Others throw lots of things out. How weird is it though?… how different we all are about ‘stuff’! The fact is, it is our choice to buy, use, box up, reuse, recycle or restore and the reasons are complex and rooted somewhere!

I know I am bordering on delirious from a mixture of extreme tiredness and the impact of such massive changes in our life and I know I am defo overthinking it but on this day as my loved ones stepped up to help load and unload our lives, the main feeling (after gratefulness) was embarrassment and I found myself making excuses and defending our hoarder tendencies. It was just so bizarre!…and obviously – as this blog reveals – really thought provoking!

There’s no inspirational song for today. There was no time for music but I was inspired by the spirit and grace of our Day 4 moving crew! Thanks again for the help. We love you more than any words in any blog could convey 

Day 3: 3rd June 2022

All About Us

As we work away on Day 3, I took a moment whilst sat taking a mindful minute to consider just how far we have come.

If you have read the first few blogs below, then firstly, well done!

Here’s a little bit about us.

We are a family of 6 + 1 assistance dog. To protect our anonymity, a decision we have made due to our careers. I have abbreviated my son’s names to the first letter of their names J- Jay and D – Dee and I will refer to my daughters by their nicknames of Boo and Moo. Our assistance dog is called Miley and she has wavered her right to anonymity. Here are some of her baby pictures to swoon over.

My wife and I are a same-sex couple who have both acquired a disability along the way.

I use a wheelchair these days after, on a cold January day in 2012 after a few months of strange and mysterious symptoms starting – mainly pain… lots of PAIN! – I collapsed. Yep, a pretty healthy just turned 31 year old running my own business and getting along with being a mum to a 11 year old boy, 8 year old girl, 7 year old girl and 6 year old boy. We were just minding our own business trying to make life work after a messy divorce and me coming out as something other than straight! I hadn’t quite decided what sexuality I identified as at that point but I had fell head over high heels with my friend and colleague. I’ll tell you all about that sometime.

After emergency treatment and a short stay in a nursing home, I had found myself bed-bound with devastatingly disabling symptoms that doctors had not yet diagnosed. I could not feel or move my legs, my right foot was turning in, I had significant bladder retention so could no longer pee without a tube, and my muscles were squeezed so tightly along my lower back, buttocks and legs that we renamed my bum Iron Ass! My bowel was not functioning properly and my hands were numb with my right ring finger and right little finger also experiencing paralysis. Ever fell asleep on your hand? That was what it felt like in my legs and my hands.

My life as I knew it fell apart as I lay waiting for answers. Eventually, as they came in dribs and drabs, I started a journey of recovery that I am still plotting and mapping out as I type this and finding my feet – somedays literally when suddenly I can feel them again. My symptoms change, so then does my level of mobility and functioning. We keep having major breakthroughs like when I was able to sit up in a wheelchair, the night my toe woke up, going back into education to focus me, gaining my degree, taking my first steps, getting an electric wheelchair, learning to drive with my hands from said wheelchair, coming off pain meds, starting part time work then full time work, and now our new challenge –

BUILDING OUR ACCESSIBLE DREAM HOUSE!

This has been a challenging journey to say the least but after I had a realisation that no one was going to save me from my symptoms and after a few diagnoses and a shit tonne of professionals who have helped me understand what has goes on in my body, I started to develop a recovery programme of my own.

I felt chronic pain and neurological conditions like mine were very misunderstood outside of a specialised team. No professional, from GP to social worker, from my bosses at work to my amazing carers over the years generally did not have a clue.

I found myself in peer-led self help groups online and at clinics with a huge cohort of others who were confused and baffled by what was happening to them too and I knew I was done for unless I could take the lead and learn to live well with my pain and symptoms.

So as I had done years before, when I wrote a children and young people’s programme, I began a quest to create a programme that would work for me. I have come to call this programme Biopsychosocial Rehabilitation and Recovery (R&R) and I can’t wait to share it with you. It quite frankly has saved my life!

As the website continues to be developed all will be revealed and if it helps one more person then big BONUS!

For now consider these definitions.

Day 2: 2nd June 2022

Living on a Prayer

Day 2 was jet washing areas of our new home and tip runs to remove the last homeowners leftovers. I feel a day behind on this moving lark! We’ve got to get the house prepped to receive all our stuff tomorrow – our official MOVING DAY! We are not ready. 

Dad worked tirelessly in clearing all the sheds and the green house that has been left on the property.

De’s room is ready; thanks to my mum. She’s steamed all the floors and kept us in brews and sustenance.

Jay and De were our muscle men again and Moo got off lightly as she had to work a shift in work or she would have been expected to flex too.

We had electric emergencies  that I don’t understand but that meant the lights and fittings need to wait a while until the little bro (who is an electrical engineer) comes back from holiday. He’s had chance to survey what needs immediate attention. He brought some equipment that looks technical and sorted the garage and outbuilding’s electrics out. Always grateful for talented family members  This project will need freebies and friends and family discounts.

I made a rookie mistake in not pre-booking a floor sander so today we are on the hunt but everywhere seems shut for the Queen’s 4 day party 

We have got wardrobes coming over tomorrow without the room being fully stripped and painted (thanks to B&Q selling us a dodgy wallpaper stripper ) and a couch  coming over without the floor being ready …. arrgghhhhh!

Me and the wife have been loading a vans worth a day at dawn so tomorrow’s move is slightly less.

I’m totally rethinking my life choices about keeping crap. I’ve been such a hoarder! We have way too much stuff. Downsizing into what feels like a small shell of the home compared to our last 2 is revealing my embarrassing hoarder shame! Even though we eventually want to extend we do not want to be taking as much clutter into our new life but it is proving slightly difficult.

Day 2’s song for the day is Living on a Prayer …because we are.  Quite simply – we are!

Here’s to another day of house moving.  I’m flagging already and I can feel the mood dipping 

Edit – found a sander! Thanks to our local hire Centre  mood lifting 

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Day 1: 1st June 2022

Loading our Life into our Wheelchair Accessible Vehicle

Living in the (semi) sticks is weird! There’s no signal on our phones! De is walking to sit outside the pub across the road to log into their WiFi for his hourly injection of internet to see him through.

We walked across to the organic farm shop across the road and couldn’t pay as they only take cash or – at a push – PayPal (which we couldn’t get a signal for). Felt amazing cooking an organic duck egg omelette with fresh produce from a working farm. (Janine, the farmer sold rag rugs! I told him all about you ).

Our first drive over from – what is now – our old home was through the country roads with music blasting; only ruined slightly by having a van full of boxes that didn’t like bends!! Inspirational song of the day is Girl on Fire, by Alicia Keys! The countryside may not have appreciated my bellowing as much as we did (okay I did – The kids? – Not so much). But, singing loudly is good for the soul and actually part of my rehabilitation programme – so I have medical grounds for disturbing the peace

The house is full of stuff left over from our Vendors; some good, most bad. So, major tip-run went down! Clearing and cleaning was the theme of the day.

My mum and Moo (our child numero tres) have started stripping our bedroom walls and the men of the house, my dad and our 2 boys (the first and last borns) were the muscle of the operation.

All hands on deck (the four of us still currently living at home) with parents and the eldest son, working their butts off with us!

Mum took care of sustenance too thanks

We do feel like our world is on fire right now! We are in fire! Going from being bed-bound, jobless and screaming in agony most days to driving my wheelchair accessible vehicle to a home we have bought feels quite Phoenix-like. It is so empowering – especially for me as there was a time I felt like I’d lost everything after my collapse and now I feel on top of the world.

MOVING DAY

Project: Mama wants a Balcony BEGINS !

We got our keys on 31st May 2022 and the rest is history – well the entire content of the rest of this blog…

I’ve always wanted to design a home. With my needs and high dependency on my environment to stay functioning – through an individualised programme that I call Biopsychosocial Rehabilitation & Recovery – it’s now pretty much a necessity that we create an adapted environment and we have a very specific tick list for a property.

Our people – our friends and family and followers – know how long and hard we have searched for a property that has the potential to meet my needs and also be adaptable to the lifestyle we want. It’s been a looooong journey of house hunting over the last year but we eventually found a place that can be developed into the home of our dreams.

We visited over 50 houses (fun but exhausting ) throughout our target area and had 2 ‘maybes’ in all of those!! – Only TWO had the potential to be adapted into an Accessible home! We made an offer on one only to go back and see all the barriers we hadn’t thought of the first time around and made an offer on another that we got trumped on – devastating!

Just like fate would have it – the moment we stopped looking, my wife got an alert on a property that ticked all our very particular boxes: We’ve never looked back (that’s a total lie- I’ve really struggled with coming to terms with leaving our home in a little affluent coastal village and had it stuck in my head – until probably yesterday – that I wanted to develop the property we were the renting – despite it only ticking about half our boxes and needing a significant amount of structural costs before we even start! Because… it’s been our home and the place where i’ve worked so hard to learn to live with my condition Loss is a tough thing to work through – thanks Elizabeth Kubler-Ross for your model which has helped me reach the acceptance stage through learning about your Cycle of Loss and Grief, just in time! Through working through it, I’m ready to say goodbye )

Our list of dreams and needs (so we’ll always remember what high maintenance, picky, and dream high bitches we were )

I really want a balcony

My wife really wants an orangery.

I need a large open living space for my wheelchair.

We need a small easy manageable garden

We need a hot tub area for my wife – that’s how she relaxes (which is very important when you are a carer – she tells me!)

We need a gym for my physio (Biopsychosocial Rehabilitation & Recovery)

We need a bath for my pain relief (Biopsychosocial Rehabilitation & Recovery)

We need rooms for all the kids (and grandkids that I’m hoping for)

I want a massive dining table for Xmas

We want a log burner

We need a driveway that will take my Drive from Wheelchair Vehicle and my wife’s car

We need it to be able to be adapted so I can get about and through doors

I need a bed that sits me up

We need space for me to get around furniture in a wheelchair

We’d like to be on a main road

I need a scenic route to work for my mindfulness (Biopsychosocial Rehabilitation & Recovery)

We need storage (I’m working on my organised hoarding issues)

My wife really wants an outside kitchen

We need a location where we can both commute to work

I really don’t want to be in a city or town.

Once we worked out what we wanted – mainly by looking at properties, we understandably found it difficult to tick all our boxes.

Once we found our house and did some basic designs, we are predicting we will need around £100,000-£150,000 to develop the property. We have given ourselves a 3 year window to earn and save £100,000 which will be for the main development of the property in 3 years. Then another £50,000 will be saved and used in dribs and drabs over the 3 years. You’ve gotta have a goal people if my collapse and recovery, and then COVID, have taught us anything it is that life is too short and you gotta work damn hard to succeed. So… that’s what we are gonna do!

On our first anniversary (paper) my wife bought me this planner.

Day 1 has started with me inputting my first £500 into our yearly target of £33,000! Nearly there then You gotta start somewhere

Bring on the fun and grafting…

Bring on the positive vibes – we can totally do this …and if we have to be realistic down the road, that’s fine but dream big and reach for the stars, right?!

https://www.exeter.ac.uk/…/learnin…/the_change_curve.pdf

https://mymethodical.com/