Home life

I’m back home safely now, thanks to a wonderful WMAS PTS crew Liam and Kim. Who are such wonderful friends and colleagues. I kinda felt awful because I couldn’t talk properly, having been dosed up on the wonder drug morphine several times before they collected me. The journey home was actually quick and I put that down to nodding off and Kim’s spectacular driving.

Anyway, now that I’m home, I’m having to learn how to do things and build my confidence in getting around. I have my wheel chair, which I can scoot around on downstairs and I also have my crutches. Those are a little more challenging, given that my strongest leg is the one that’s been operated on! Leaving me with a weaker leg to hop on for the next 8 weeks!

Another huge challenge for me came in the form of Dalteparin injections, which I need to have every evening for the next 12 weeks, to prevent DVT’s. Never in a million years was I going to inject myself. I can inject anybody, but the thought of sticking a needle in myself filled me with dread!!! Wayne was taught how to administer it to me while we were in the hospital. But I worried about him doing it. So I got on with it and to be honest I don’t know what I was worried about! I don’t feel a thing!!! I feel incredibly proud of myself.

Getting up the stairs is easy enough on your bum, because I refuse to sleep downstairs. I want to be able to go up and use the shower and sleep in my own bed. I have a footstool at the top of the stairs, which I use with my upper body strength to sit on, before getting to my feet (or foot!) and proceeding with crutches. Tonight however, I did get a little too confident! Once on my feet at the top of my stairs, I found myself with a little more confidence than I should have at this stage. I lost my balance. Smashed my bad foot on the ground, then gracefully fell backwards landing on my posterior! My leg was in the air in some silly attempt to protect it, and my crutches were pointing to the sky!! I have to admit the way I landed was rather funny! Confirmed by Ellie who came out of her room and promptly fell about laughing. Poor Wayne was trying to help. So I asked him for the footstool ( with no intention of using it) then proceeded to scoot all the way to my room on my bum! Followed by an amused family at my sheer determination.

Yesterday my pain levels hit the max, and felt sure my cast was too tight, went back to Oxford to have the cast looked at again. My foot had swollen so much and it had no room in the cast, Hence the excruciating pain. The wonderful ladies in the plaster room cut my cast back to a backslab and bandaged it to my leg, after they had redressed my surgical wounds. The relief of coming out of that cast was so immense I could have cried!!!

So today I decided I was staying on my bed for most of the day, and thankfully it has really helped keep my pain levels under control, managing on just paracetamol all day! However since my dramatic tumble earlier, I have needed to take some codeine ( my own stupid fault!)

The great part of not being able to do much is the cuddles and company of two incredible dogs, whom I absolutely adore! They always find a way of making everything seem so much better!

Day 1 post op

The first full day following the operation. As predicted, the nerve block wore off rapidly. The pain was the worst I’d ever experienced. It was almost like having your ankle put in a vice a tightened until the pain is unbearable, then having a rip saw set up on it. My heel felt like it was on fire!! The consultant was concerned that swelling was causing the cast to be too tight and contributing to the pain and suggested I may need to pay a visit to the plaster room.

I took everything I could; paracetamol, codine and morphine. In fact I was taking 20mg morphine every 2 hours at one point!!!

I was sent to the plaster room, where the cast was removed, and I got to see the wounds for the first time. ( sorry for the pictures) the surgeon has done such a neat job! One thing that strikes me is how flat my foot is, from the high arch I had previously. I really can’t wait to see if buying shoes are easier once these operations are over.

Physiotherapist came to see me once my pain had settled, and had me up and about with crutches, hopping to the bathroom. They also ensured I could safely use my wheelchair at home. There was just two simple things I was looking forward too… getting to use the toilet again instead of the dreaded bed pan; and having a shower!!!

Physios agreed to me having a shower and took me into the bathroom and made sure I had everything I needed. I used my Bloccs plaster cover to stop the plaster getting wet. It was heaven!!!! The feeling of warm fresh water running over the body, washing away everything from the last 24 hours was the best feeling in the world.

I was told that as I could clearly manage well enough, I could go home tomorrow ( Wednesday) so then it was down to discharge planning.

My transport home was booked straight away, as I needed a stretcher to keep my leg elevated, and being so far from home it was imperative this was booked ASAP, giving them at least 24 hours notice. My medication had already been ordered and produced, they only needed to add an anti emetic, and that took half hour! I was suitably impressed by the length of time it took to organise such a smooth discharge. I was all set for my final night in hospital.

Operation day

I apologise for the delay in writing this. The morphine fairies wouldn’t let me function !

After a restless night with very little sleep, the alarms around the house broke the silence at 0445 and we all dragged ourselves out of bed and into the car for the 66 mile journey to Oxford, watching the darkness slowly turn day as the morning moved on. I drove the journey there as it is to be my last driving for sometime. We arrived with 20 minutes to spare before admission time and even if I could have had a coffee, nowhere was open anyway.

It wasn’t too long before I was shown to a bed, where we were pretty much greeted straight away by the anaesthetist. We discussed the General anaesthetic but he also mentioned about creating a nerve block below knee while I was asleep, to provide adequate pain relief when I wake up.

I was then measured and fitted for my sexy new stocking, right before my consultant arrived to discuss the plan of action of the day ahead. Everything was moving ahead so quickly, like some kind of speed train, minus the breaks!

Having enquired several times about where I was on The theatre list, I was still unable to ascertain what time I would be going down as the theatre list was forever changing.

I was assured it wouldn’t be much before 1pm, so with this in mind I sent out Wayne and the girls for coffees and breakfast, giving me the perfect excuse to shut my eyes and catch up on the sleep I had missed out on the night before.

I was woken by the return of my family, just before after 11am followed shortly by the theatre Porter that has come to take me to theatre. Except I wasn’t ready. I wasn’t in my gown or anything. Theatres had changed the list, meaning was going earlier than planned. I didn’t mind this so much because it meant that I had less time to worry about things.

11:58 …. the last time I saw on the clock in front of me in the anaesthetic room before being put to sleep. I had said my goodbyes to my family at the doors and I was working out how long it would be before I saw them again, then it all went blank!!

My next recollection was being woken up in an unfamiliar room, bleeping sounds echoing around me and a nurse trying to rouse me. Disorientated and confused I managed to look down and see the evidence of what had been done to me as I was greeted with a purple cast. I wasn’t in any pain, and I certainly didn’t feel groggy. All I wanted to do was sleep.

I don’t remember too much about seeing my family after my operation. So don’t think they stayed all that long, as I think I was very sleepy.

I do remember the ward was awfully noisy. Lots going on around me. A young girl was in tremendous pain since returning from theatre and resulted in several medical emergencies and her subsequent admission to HDU.

Despite the traumatic surgery my foot had just undergone I was in very little pain. I remember lay there thinking I had it easy. But I was warned by one of the doctors that I would feel it once the block wore off. Even though I was pain free I still found it exceptionally difficult to get to sleep, so I stayed awake … chatting for my neighbour in the opposite bed.

One thing I hadn’t considered in all of this…. how on Earth was I going to get to the bathroom when I needed to go? The fullness of my bladder was screaming at me for relief. I called the nurse, and she presents me with a bed pan!!! I’m 38 years old and feeling the indignity of having to use one of these contraptions on my bed while trying to master the art of not overfilling it or allowing it to tip over as I lifted my bottom

I’m not completely incapable of using the bathroom. I may require some support and a assistance. Besides the very next day they had every intention of getting me up to show me how to get around the bathroom independent. I imagine it would have made life so much easier for the poor nurses in our bay on this first night post op!

With out The professionalism and support of all the wonderful nurses, doctors, porters and everyone else I don’t know what kind of a state I’d be in!

Night before admission

Here I lie in bed at 23:00 the night before my operation. I’ve showered in some awful chlorhexadine body wash, shoved naseptin cream up my nose 4 times today in the hope of cleansing the body of any harmful microbes that may be living on my skin, ready to attack when the surgeon opens me up. Contracting MRSA is not something I want getting into my surgical wound, so I have complied with all my pre op instructions to the letter!

My bag is packed, car fuelled and my emotions running high. I would be lying if I said I wasn’t totally petrified of what lies ahead. Not just the next 24 hours, but the next 4 months! My brain today has been in overdrive. Thankfully one of my lifelong friends paid me a visit today, which took my mind off things for a few hours. Laura has been a friend of mine for as long as I can remember, about 34 years I think. She is more like a sister to me than a friend, because despite living in Manchester she is always there for me. It doesn’t matter how long it’s been since we last spoke, every time we do it is as if we were never apart.

Everyone has been so supportive. I’ve been inundated with messages and phone calls today from friends, family and loved ones with their best wishes and messages of support, it’s actually overwhelming and I thank all of you from the bottom of my heart.

My husband has been a tower of strength, along with my lovely girls. When my world feels like it’s about to cave in on me, they have been there to hold it all together. Providing hugs, reassurances and plenty of cups of tea. My heartfelt thanks also go out to my mother in law Barbara, who had a very nervous and tearful Donna on the phone earlier today. Mom has an incredible way of putting everything into perspective and making everything better. In fact between My mother in law and husband, they have got everything planned over the next 7 days and I’m already truly grateful for everything.

Well I had better close my eyes in an attempt to get some kind of sleep, before the alarm pierces the silence at 4:45am. Im sure Wayne will update my nearest and dearest once he has any kind of news tomorrow following my operation and I will post updates as soon as I am possibly able.

Thank you every one for your kind words and support ….. Night Night!

Last day at work

So today was my last working day before my operation. I’ve worked in my local hospital for 20 years. Starting off as a fresh 18 year old Nursing auxiliary, then venturing off to college and university to become a registered nurse. In these 20 years I’ve made some incredible friends and met some inspirational people.

4 years ago something happened in my life that completely knocked me for six! But the love and support of my colleagues was overwhelming.

So today, as I walked the corridor for the last time before the op, I had so many hugs and well wishes from porters, volunteers, cleaners, nurses, ambulance workers and doctors. I feel so blessed to work in an organisation that feels more like a family. I fully admit I’m going to really miss work over the coming months, not the stress but the people; both the patients and staff that make going into work so worthwhile and rewarding.

See you all in roughly 6 months!

Pre- op Party

With a little over a week to go until my surgery. My friends, family and neighbours came together for my pre op party. With live music by Facta3 and plenty of food and drink, a great time was had by all.

I’m so truly blessed to have such wonderful people in my life. It’s these wonderful bonds that will give me strength during my recovery. I love everyone of you. Thank you for being there for me xxx

I do believe we broke our record yesterday with 46 people in our home.

Special thanks to Clive,Martin and my incredible husband Wayne (AKA Facta3) for agreeing to play last night and putting on a wonderful show.

I’ve got this!

Yesterday we arrived on our annual Blackpool trip. The roads were horrific with traffic, made worse by the diabolical English weather.

I drove the entire journey, as it distracts from the nauseating feeling I get as a passenger. We stopped part way to allow a comfort break and to get a late morning fix of caffeine. The one thing that struck me on this trip was how unsteady I was. More so than usual and as I stood waiting to pay for our coffee I realised it was like this since I had got up in the morning. I had almost crashed through the bathroom door first thing, like Bambi on ice! Had wobbles when using the stairs, both at home and in the service station and I almost went over in Costa coffee. Despite this, I fortunately managed to stay on my pins, and not end up giving the floor a hug!

This makes me wonder why some days are worse than others? Has this been steadily getting worse over the course of a few days? Or does my body just decide I need a challenge today? Well, I had several drinks, laced with alcohol and to my surprise towards the evening I felt more steady?? How does that even work?

I’ve been living with CMT all my life, but only really noticed since my teen years. I still don’t fully understand from one day to the next why some days are worse than others. What I can do to help myself. It’s almost like there’s a controller that sits in my brain ( a bit like the film inside out) and thinks “Ok, let’s make life a little bit interesting today” then has a giggle as they sit back and watch the day unfold. Sometimes this same controller decides he wants a day off, so flips the switch that says “Extreme Fatigue” to put me on my backside, while they go off for several days, leaving me overwhelmingly tired and a need to sleep. Then returning and allowing services to resume as normal.

I don’t think I’ll ever get CMT, I just need to learn that it is what it is, and take each day as it comes! But with each new challenge, I will always be the one that’s got this! It won’t ever beat me. In fact I stand in the face of CMT with my stubborn and independent personality and know that it’s really met it’s match! I’m not going to let this define who I am, I won’t let this get me down. I’m going to fight it and keep doing the things I love to do, even if it’s difficult or challenging, because that’s me!