Tag Archives: total hip replacement

Burnout

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I am a people pleaser. I don’t like confrontation and want to help as much as possible. I would like my epitaph to be – she did her best to help and tried to always see the best in everyone. I would like to be that good, though I know I’m not always and I catch myself not being the kind and generous person I want to be and try to change.

I see the anger that others feel about the pharmaceutical companies and solicitors and legal decisions. I am upset and disappointed that things have not turned out the way I hoped, and a bit resentful that my life has changed so much from what I feel at my age it should be – and that others feel they have to look after me. I grieve for the loss of the life I feel I could have had, but I don’t have that anger. I remember feeling anger a long time ago and making myself move away from that as it felt frightening and out of control – and I need control.

But now I have burned out. It took others to recognise it but mostly myself to admit to it. I always feel I have no right and there is always a bit more I could take on, and guilty that I might be putting on to others. But I wanted – needed – to run away. I couldn’t face emails or anything from work. I couldn’t answer the telephone or open letters. I couldn’t respond to emails and eventually each day only the absolute necessities got done. 

It is still a bit like that but I think the Sertraline has reduced the anxiety a bit. I still feel it and it gets to me, but it could be much worse. I can feel a bit more rational and make some basic decisions. I still feel the opportunity to buy our own house with parents – the type of house I never thought we could own, is a bit unreal. I can see my husband and son and parents in law there, but still not me. I feel I am dying and may never get there. I’m not scared as such but feel very sad that the promise of a home of my own or the surgery that might finally help me will come along. It all feels a long way away from me and while there is more manageable anxiety the dark thoughts still plague me – more so when my husband is feeling more psychologically able and productive and things are happening around me but not to me.

I read a blog this morning https://www.thecounsellorscafe.co.uk/single-post/2018/07/03/Is-your-childhood-the-cause-of-your-Burnout which says:

“People pleasers often come for therapy with burnout symptoms. An exploration of the early childhood of these clients can often find that they; grew up adopting the ‘peacemaker’ role within a turbulent household; grew up with strict parents with rules and regulations they had to follow regardless of their true feelings or beliefs; grew up with a parent with a mental health issue which meant they had to be ‘good’ and not create any trouble or added pressure for that parent, putting their own needs aside; or grew up with a sibling with a physical or developmental difficulty such as Asperger’s whose need for parental support was greater than the sibling without difficulties, hence the ‘well’ child grew up compliant recognising their needs were less important.

All these scenarios can contribute to a person’s inability to emotionally regulate themselves and a failure to attend to or even notice their own physical symptoms of burnout. The background and old dynamic of people whose needs were put aside can often repeat itself in the workplace as they put the emotions or needs of others before their own and fast-track themselves down the burnout road.”

This pretty much sums up my childhood and still I have those feelings of being less important, more able to manage alone and not being good enough. Even over the past few weeks while my husband has struggled too, I made him tell the GP at my appointment how he was feeling, and he dropped into a hole. Since then everyone has worried about him. My mum has just stayed here and at least twice has referred to how he is struggling or may be getting a bit better and commented that he might not manage to organise something but I can do that for him. Twice I’ve pointed out that actually, I’m on double the dose of Sertraline that he is, but then back down. It is ok for him to be struggling emotionally and psychologically, but not me, because I’m expected to just get on with it and look after others – like my mum does.

I have enough to look after – her as she continually battles with my alcoholic, selfish and hopeless brothers, who I still suspect of attention seeking as they have all their lives – as my dad did. So I feel I have to be there for her, even though she is many miles away. I have my husband, who looks after me so I feel guilty and feel I have to do as much as I can for him. This is not difficult as we are a team and I want to look after him, but I fear that he may one day have had enough. I have our disabled adult son to try to manage and keep calm. I have had to remove myself from people who have made me feel worse (in the main) because I simply haven’t the energy to manage their difficulties as well as my own. Difficult when my profession is all about helping and supporting other people, so that adds to the guilt trip.

I don’t know where I am going with this. Everything still feels hard but I don’t feel I can tell anyone and bring their mood down too. I feel I am not entitled to be like this. I feel the anxiety still sometimes becoming overwhelming and feel my feet flapping urgently under the water while I battle to stay calm for everyone else on the surface. I need some time alone to revive my energy levels, but struggle to find it – or have space where it is quiet and no one is talking or doing things. It may only get worse when the family living together gets bigger. But just now, just here, I can say how I feel. Would I still feel this way if the disastrous situations with my body had not happened? Who knows. It may be this in reality that has been part of the journey to this point, hard as it has been and still is, so I am trying to look at the bigger picture. But for now I just need peace, calm and to rest.

 

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Invalidated

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My story started when I had metal on metal Birmingham hip resurfacing, on the advice of my orthopaedic surgeon, left and right hip in 2013. They were supposed to be the best thing since sliced bread for younger people. Sportsmen and dancers were having them done. Indeed Craig Revel Horwood had the same procedure as me in the same week and was dancing across the Strictly stage five weeks later.

My left hip failed after two years (2015) with dislocations due to metalosis. After the second dislocation, I was told this was happening, mostly to women who had smaller prosthesis fitted. The metal from the prosthesis was wearing and breaking down tissue in the joint. My blood levels of cobalt, chromium and nickel were way above the threshold limits for immediate removal, altogether known as ALVAL (aseptic, lymphocyte-dominated vasculitis-associated lesion). The metallic particles create a very dangerous hypersensitivity reaction or abnormal immune response. ALVAL can cause inflammation, fluid, and psuedotumors (tumour-like lumps) to develop around the affected hip joint. As a result, critical blood vessels and muscles can be completely destroyed, resulting in grave disability or even death.

My hip was revised but became infected – twice. I had a year (2016) of intravenous antibiotics of last resort, followed by complete removal of the hip to save me, sinuses on my leg, continual draining of turbid fluid from my leg, or – once it finally healed – swelled up instead. It has been washed out, necrotic tissue, muscle and bone removed, partially revised twice more and I was left with no hip joint at all for twenty-two months, managing to get around the house hopping with a walking frame or in a wheelchair.

It was finally revised again in January this year (2018) and dislocated in March and May (and about ready to do so again) because of the metal fragments still in my tissues. I have lost my adductor muscle and much of my gluteus, other tissue and necrotic bone and my femur is spongy. The pseudotumours are in my groin and pushing out a difficult-to-dislocate hip through the pressure of the pseudotumour fluid build up. The turbid fluid drained from my hip each time is well over a litre and contains blood clots. My surgeon has now admitted defeat and referred me to a plastic surgeon and hip trauma specialist.

My next surgery will be the fourteenth on my left hip and sufficiently radical that I have been warned that I may bleed to death (exsanguination – the femoral artery is already compromised and bleeding due to pseudotumour), may injure my sciatic and femoral nerves so that I lose the use of my leg, and will need high dependency care. The complete removal of everything will be followed by at least four further clean outs over six months and intravenous antibiotics before an attempt is made to put in another hip. This is without consideration of the already failing right hip (fluid was seen around this hip in 2015 but was not as bad as the left). My BHRs were 40cm and 42cm, which have since been recalled by the large pharmaceutical company who make them.

I am exhausted, ill and depressed – as are my husband and learning disabled dependent son. Our lives have changed irrevocably and it is an ongoing nightmare from which we can never recover. I am disabled, have lost much of my own work and income, my husband has lost even more from his need to care for both me and our son and the over one hundred hospital visits so far in the past thirty-two months. 

We joined a group action against the pharmaceutical company with a large group of solicitors. The pharmaceutical company now threaten us with costs over a legal case they say we cannot win against them following a judgement in another larger case regarding metal on metal implants. I have now received a letter from my solicitor, following advice from QC, to say they are dropping the case against the pharmaceutical company regarding the faulty metal on metal hip appliances, even though the size of mine was deemed to have an over 25% rate  of early revision required in 2010, and if I pursue it alone I will have no insurance.

I am feeling rather invalidated for all our continuing struggles. Oh – and there are dire warnings about me not telling anyone!

The black hole

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I came across this poem the other day.

Autobiography in Five Short Chapters

By Portia Nelson

I

I walk down the street.
There is a deep hole in the sidewalk
I fall in.
I am lost … I am helpless.
It isn’t my fault.
It takes me forever to find a way out.

II

I walk down the same street.
There is a deep hole in the sidewalk.
I pretend I don’t see it.
I fall in again.
I can’t believe I am in the same place
but, it isn’t my fault.
It still takes a long time to get out.

III

I walk down the same street.
There is a deep hole in the sidewalk.
I see it is there.
I still fall in … it’s a habit.
my eyes are open
I know where I am.
It is my fault.
I get out immediately.

IV

I walk down the same street.
There is a deep hole in the sidewalk.
I walk around it.

V

I walk down another street.

Copyright (c) 1993, by Portia Nelson from the book There’s A Hole in My Sidewalk. Reproduced with kind permission from Beyond Words Publishing, Hillsboro, Oregon.

I’ve been walking down other streets for a while now. Cheerfulness Street; Hope Street; Gratitude Street; It Is What It Is Street – always finding myself at this crossroads and choosing a different way. It’s always been there lurking though. A few days ago I suddenly found myself back here though. I would have chosen to walk around the hole perhaps, but last night I fell in. 

I’m not inexperienced – I have steps in my hole – I can climb out usually, but it feels too enticing to just stay here in the dark, and the steps to get out are slippery.

It didn’t take much to tip the balance either. A couple of weeks of not getting out at all (on top of four months of being stuck in the same house, same room, same chair day in day out), my husband away at the weekend so extra time on my own, a reminder that my weekend might have been broken up by visitors – except I don’t know anyone here and so don’t see anyone, and my husband announcing he both was going to be spending time indefinitely further away from the work site we expected and that he had to be there for an earlier meeting today. Just 1/2 hour extra time alone – but that’s all it took. The little jab that lost me my balance and pulled me in. The realisation – the truth of the situation I am in – I am housebound, alone and isolated. The only people I have are my husband at work, who could do without this, my son who I am supposed to be carer for, and the cat who only  really cares for whoever can bend down and feed her. I was even shouting at her yesterday for running in and out of the house, making me get up and open and close doors. The truth is perhaps that I was envious that she could run in and out of doors and visit different places.

It’s not a good week. On Monday I was supposed, finally four months after dislocations, to have the first of my surgery and have the hip that repeatedly dislocated revised. The metal levels in my blood, the damage to both hips seen on MRI, the repeated dislocations, all added up to getting it, then the other hip, out as soon as possible. Except my blood pressure is unexpectedly dangerously high. No amount of – but it could be the metal causing this, you could do a spinal so my BP drops – was going to sway the surgeon and the anaesthetist.

So here I still am – still waiting, still on my own, still not able to complete an entire task on my own, still on hippy rules, still waiting for that next misstep that dislocates one or other hip. Still in my black hole looking for the energy and motivation again to get out.

Or even just a friendly helping hand.

Hippy 1st Birthday

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It was the first birthday of my right hip yesterday – 48 and a bit years behind the rest of me. birthday cakeThe celebrations started with 60 lengths of the swimming pool followed by dragging my hoola hoop, not used for some time, out of the garage and into the sunny garden where I at first tentatively tried it out to see if I could still do it. 100 rotations both clockwise and anti clockwise later I reckon those hips are up to it again! After supper there was an extra walk around the football field, mapped by map my walk – although unfortunately by this time I was already very tired and it was a rather painful walk back, a sleepless night and a very stiff me who got up this morning.

I had thought we might go out last night to celebrate. I suggested to my husband the night before that we might go out and reminded him that it was my hip’s first birthday. I guess either he didn’t take me or the life changing thing for me that is my hip replacements and arthritis seriously because he conveniently forgot. I was a bit – ok a lot – upset at this, but I was certainly not going to remind him again if he couldn’t be bothered to hear me the first time. This happens a lot. Work seems to take priority and while it pays the bills and I contribute very little, it does appear to be on his mind considerably more than we are.

The thing is I don’t really know how to explain to him, or anyone else, what this is like. As I’ve said before, my mother has just decided I’m like her and she just had to put up with it so so do I, so she rarely asks about me and if she does mention it she tells me what I am like and doesn’t stop to listen to me. I accept I may shut people out and so they don’t ask me, but to tell them how I feel makes me vulnerable, and if I’m vulnerable then I’m hurt when they don’t hear me, and so rather than risk that I hide when what I would really like is someone, my husband for example, to say – yes I know this is hard, let’s do this or that to help you.

Cooking for example in the evenings. It hurts to stand for long, so usually I prepare a meal throughout the day just to finish later. I work from home and rarely go out anywhere. He goes out to work and will also have nights out with work occasionally, so to go out for me is a huge treat, but not for him. So a night where I have thought we might go out and then don’t not only is disappointing in him forgetting or not wanting to go, but I then have to prepare a meal and clear up all in one go and am in pain.

I never really understood previously that I was in pain. It is a strange thing. I read about others talking about agony, but it’s not like that for me. In some ways it is more insidious. I wondered for years if I had chronic fatigue or a constant flu, because that is what it is like. The ache in my bones is just like a really bad dose of flu. The fatigue that comes with it makes it difficult to concentrate and is trying to my patience. My husband would ask why I was huffing and complaining and I would say something hurt and he didn’t understand. I didn’t really understand myself – I was just exhausted. The diagnoses I have had have been a revaluation in understanding what is wrong – that there is something wrong in fact – and for my husband to realise that there may be a reason for my not wanting to or being able to do all the things I used to other than me just being unsociable or difficult. Now a bit less is expected of me. Less of a label and more of a signpost.

This has made my husband sound awful, and that’s not true, but he puts a lot of pressure on himself over work and money and rather takes me for granted because I’m always here. The pressure on him and my inability to look forward any more and see a way of seriously contributing makes me feel guilty. He also has a knack of talking now about not being able to do things anymore as though somehow with my diagnoses my life is over instead of just coming up with different things and ways around it. But that’s another story – even though this is the one that kept me awake all night. 

So I would have liked to celebrate a bit more than I did. For me having my joints replaced and having a chronic pain condition that is getting worse is a huge thing. But I guess that’s just me! cat_animal

Doing the best I can.

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I read a blog today by a lady called Toni Bernhard. I’m not intending to copy as we all have our own stories, but her headings made such a lot of sense – and so I hope she  won’t mind if I use them. Chronic pain, chronic illness – there are hundreds and hundreds – and many more people who suffer day and year in and out. Mine is specifically arthritis – and a severe and chronic mobility and pain issue that seems to have crept up on me so fast I still can’t quite believe it.

We mostly all have people who do a lot for us – my amazing people are my husband and my son, and also people I have met through forums or friends on Facebook, who know what is happening and always comment positively to lift my spirits, and to those people I am endlessly grateful.

However, Toni is right – there are things you really wish you could say, but don’t.

1. The grief I feel over the life I’ve lost.

It is one of those major life stressors, like death, loss, separation, moving away – endings of  all kinds.

There is a lot to grieve over, yet I didn’t really know that until now. My parents had many chronic health issues between them. I thought I’d avoided them all. And I certainly never considered grief. Surely getting to retire early is a bonus!

Now I know that there is a lot to grieve over — I’m pleased I trained to work online, because if I’d still been a teacher, for example, I would have had to leave work altogether. There is the loss of income, not being able to go out alone, the loss of independence, saying goodbye to any real activity – I’ll probably never get back up a mountain, manage the boat, join in runs or hikes or activities that others write or speak about and take for granted, and it’s lonely. My life is changed forever. There is a big dark hole where ‘I’ used to be.

Mostly I’m fine. It’s not like losing a partner or a child to death. At least I have a life and I intend to make the best I can of it. Most days are good and I can laugh and joke and be upbeat about this. If someone asks how I am of course “I’m fine” – the most widely told lie. But sometimes it just comes out of the blue. Something is said, or read, or seen, or thought and suddenly there are tears – where did they come from?! And it can be terribly intense.

It’s the whole process – and we’ll go with the Kubler-Ross 5-stage model here.

Denial – this isn’t happening to me. It’s a mistake. The scans are wrong. It’s not as bad for me as for others. Anything to shut out the magnitude of what has just been dropped on us.

Anger – “why me?”, “This just isn’t fair!”. Why not? It has to be someone – ok that doesn’t help, but that’s what I’ve been telling myself. I don’t know who I’m angry with. Actually there’s only me – there isn’t anyone else I can be angry with.

Bargaining – anything to extend things. Having replacements can fall into this category – I have new hips and am about to have a new knee – but whenever I have something replaced something else seems to be wrong.

Depression – “What’s the point?” I can’t do things, why bother trying? This is when I start to avoid people and things.

Acceptance – looking forward to this one!

And there is always someone worse of isn’t there? Well of course there is – but it really doesn’t make you feel any better. 

2. I feel as if I’m letting you down.

My husband is great. However, I do wonder why he would want to be with me – especially now. I’m more trouble than I’m worth like this. My son – I try to do what I can with him but I feel guilty when he needs attention, wants to go out and do things – it’s so rare! – that I feel terrible if I just can’t do the things I used to not so very long ago.

I feel I need to apologise for not being able to join in, for being in pain, for being too tired (and arthritis and pain make you unbelievably tired!) 

I feel as though my pain and limited mobility, and that it is getting worse, has ended their lives too. I was there for them, and now the tables have turned.

I can no longer even pretend my prospects for contributing to the household income are going to get any better. Sometimes it feels as though hope has gone too.

As my mum says, well you just have to get on with it don’t you – you have no choice – everyone else needs looking after – I had to do it – I can do anything I put my mind to …. yes – that’s guaranteed to make me feel worse. Especially as she never asks how I am (because I’m just like her apparently so should just accept it as she does!), but will ask about my family (great 🙂 ) or tell me about my brothers whose lives are falling apart as a result of their own behaviour and attitudes (not so great 😦 )

3. A chronic condition can be embarrassing.

I  always set unrealistically high expectations for myself and then judge myself negatively when I can’t meet those standards. I’m a perfectionist. But I’m trying to get better 🙂 

We live in a culture that repeatedly tells us we need not be sick or in pain. Also, we have this British stiff upper lip – we pull ourselves up and just get on with things and don’t complain. 

Guilt creeps in too – as though I did this to myself and it’s my fault I can no longer be the person others expect me to be. Do they expect it? – or is that another unrealistic expectation of my own?

When I am asked to do something I have to now think about whether I can. I have always wanted to go to Italy, among other places. I’ve never been abroad beyond 4 days in Paris where i was pregnant and ill, and 4 days in Disneyland Paris where my son was ill. The opportunity was finally raised and I’m having to say no. There are all sorts of places I would like to go and see, but I can’t walk there or around them. To do it my husband would have to take me in a wheelchair – not fair on him. We’d be in the way of others – not fair on them. I’d slow everyone down.

And in a future where we try to keep our private lives private, I’d have to declare to the world my most inner secrets of my health – that I am in pain, I am stiff and sore and can’t move or stand or walk. It’s like saying I’m old, fat, unhealthy – but it’s my own fault – I should be young, slim, fit and up for anything.

Now I feel guilty because I have someone else to clean my house, touching my things, being in my space – because I can’t do it myself, but in telling others I feel it makes me sound snobby – as though cleaning my own house is beneath me. I can’t go out to work any more. Online work is limited and I will never earn a great deal of money. The pressure is on my husband to work, look after us, look after me! – and also earn enough somehow to get us a home of our own and keep the household going. I feel helpless in the pressure he has on him because of me. However, if I had a choice, I would certainly be independent. Being dependent is not something I would wish on anyone – that feeling of not being entitled and having to ask for things when you don’t earn or have the ability to do it for yourself.

So to my husband and son – I love you – I don’t want to be like this and I am grateful for all you do for me. But it sad, and embarrassing and lonely here. I feel I should be better for you – and I’m doing the best I can.

 

Cyber upgrade 3

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I’ve been to see my surgeon this morning – primarily for the results of the MRI scan on my spine – it wasn’t great 😦 

The MRI result has shown a list of words that make no sense to me at all, but basically my spine is twisted (lumbar scoliosis convex to the right), collapsed (retrolisthesis L1 – L2 – L3, with associated annular disc bulges and osteophytic lipping), arthritic (facetal OA),  out of shape (ligamentum flavum hypertrophy resulting in lateral recess compromise), squeezing nerves (acquired spinal canal stenosis) and I’ve lost 2 inches in height that frankly I couldn’t afford to lose at 5’2” (now just 5’!). 
Do you know, I always said I had not evolved from being a small furry mammal. I suspect I should never have been standing upright on 2 legs at all.

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In view of now having to add a spinal specialist to my list, it was decided that the left knee was going to have to be replaced sooner now rather than later. There is a long wait to see a spinal specialist – none in this area at all – and having my troublesome knee replaced would at least be one less joint hurting and hopefully continue to give everything else a better chance of success.

 

The truth is I’m trying to ensure we have a gorgeous summer again by being back in full length dark green surgical stockings for the whole of it. A friend suggested they could become a new fashion accessory. Wait until they see them with the pretty summer dresses I bought to go with them last year! 🙂 At least with a new knee I might be able to reach to paint my toenails that show through the hole at the end. When I had my hips replaced last year I wasn’t allowed to bend that far. A whole summer without glittery toenails!

Surgery will be soon after the first birthday of my first metal hip – Monday 7th July. We couldn’t make it later as my surgeon is going away until after the summer from the 10th. He did ask if I was ok with that because he wouldn’t see me before I left. I was thinking I might be racing him out of the door!

I’m aiming for bionic. That will be 3 metal joints now. Just as well I don’t do any flying! I’m also getting younger all the time – well parts of me anyway!

There’s not much point in not being upbeat about all this I feel. Life happens! – and at least I have one. My friend’s husband’s heart stopped one night at the beginning of April and the emergency services and hospital couldn’t get him back. They had just celebrated the first birthday of their long awaited daughter. Another friend died of a sudden infection at the end of April. She was 38. My arthritis is a minor inconvenience in comparison.

So – here we go again!

 

The first year

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It’s a year today since my first blog post. At that time I had just learned that I had severe bone on bone osteoarthritis in both hips and my left knee. My surgeon said replacements were the only way forwards.

Since then there have been ups and downs as re reading through any of my blogs shows. Ultimately mostly it is ups.

How have things been since I last wrote here a month ago? Well, I’m still waiting for my MRI results on my spine as the appointment keeps being cancelled and changed. I haven’t decided what to do with my knee yet, and am waiting for this result to make a more informed decision, though we’ll probably wait until next spring. I have a 2 week holiday in Devon in August (yippee!), my 50 birthday in October (I have a 100 year plan, so just hitting middle age now!!) and my 25th wedding anniversary at Christmas, so lots of things to celebrate.

My hips are, I think getting better. I am walking about 2.5km a day or swimming almost a mile. Admittedly the walking is with poles to try to keep my back upright. It wants to bend and if I straighten my back my knees bend instead. I can lie for a short time on my left side, and a bit longer on my right, though this I guess is more a feature of whatever is wrong with my spine rather than my hips. The pain in my back and knee does wake me regularly. I sleep with a pillow under my knees, which my physio didn’t like at all, but I do take it out and spend at least 30 minutes x 2 in 24 hours lying completely flat and also still do my knee exercises.

I can sit with my legs crossed now, but still not cross legged on the floor. I’m working on that one, though each time I do I expect to pop my hips out. I can reach my feet if I bend but I can’t lift my legs any more to, for example, wash my feet.

I think some of my back problem may be due to putting the hips in their correct orientation. Maybe I should have stayed crooked! If I think about it, I have had problems with my back for years, but it was ok and yoga or a massage usually fixed it for a while. I’m still doing my plank, but I can’t get over a minute 😦

Being in pain is tiring, but it’s mostly under control now. I still have pain but it is manageable with 3 tramadol and 3 ibuprofen a day, with an extra tramadol on bad days.

I can still mostly only go up and down stairs one at a time, though sometimes with support on both sides I can do it continuously. The problem here though is mostly my knee, not my hips any longer.

On the other hand, a couple of weeks ago we decided we were going to go out on our canal boat for a long weekend. We hadn’t thought I would ever manage again and put it up for sale, though it hasn’t yet sold. However, we developed a system. Getting on and off and down the steps was really not any different to getting in and out of the swimming pool. At locks my husband got off and held the boat until my son came to take over. He did the lock gates and when almost ready my son pushed me off the bank and I did the steering in while my son went to help his dad. It was like I’d never been away. Not a single bump! Everything went smoothly. After the lock was full or empty I held the boat still while they closed the gates and hopped on. The only accident in the whole weekend? Falling over in the bath. A nice new set of bruises to highlight the scars 🙂

So many changes. Would I do it all again if I knew last year what I know now? There have been times when I would have said no, but overall the answer is yes.

Still plenty of changes to go yet though! thinking