4 weeks post op

So today it’s exactly 4 weeks post op. I’m really pleased with how the recovery is going. I’m pain free now, although being in cast can be uncomfortable at times. My wounds have healed really well and from today I can partially weight bear. Although I admit to having started doing this a little earlier, and I’m coping with it really well.

I’m actually starting to think more positively and that I’ve made the right choice in having this operation. Previously I was doubting my decision, partly due to fear of the unknown. But in light of my good recovery so far, I know I can recover well from this and be back on my feet In no time. I have the determination and positive attitude to get the best outcomes from this.

In 2 weeks time I get to go back to the Nuffield orthopaedic centre to see the consultant and hopefully, both X-rays the and examinations will agree with how I feel about this recovery.

Can’t Sleep!!

Well, I knew I was having quite a good run lately. But CMT is the cause of my insomnia tonight. I’m in so much pain!! I’m not talking about pain due to my operation, this is different. This pain I live with day in day out on a much lower level that I can usually cope with. But tonight it’s off the scale!

The only way I can describe this is by likening it to tooth ache, very very severe toothache that has taken over both of my legs and also my hands and arms. It feels like my legs are made of concrete, and when I walk it’s like walking through thick deep mud. I know it’s bad, because it’s woken me from quite a deep sleep. My hands feel heavy, clumsy almost. There is nothing and nowhere I can put my limbs that will make this any better.

Pain killers have never helped in this situation to free me from this awful and debilitating pain. Yet I have still taken them, hoping that by some miracle they might actually work this time! Imagine this pain as a gigantic iceberg with a big pointed top. All the pain relief ever does is round off the tip, taking away only the slightest bit of sharpness. I wish I had a hot tub right now as they help loads. Maybe even a hot bath, but in this plaster cast I just wouldn’t be able to get in or out safely. The best I can hope for is sleep to take me away from it for a while. But even that’s not going to happen now.

How long this will last is anyone’s guess. Sometimes it can be over in a matter of hours. Yet other times it goes on for several weeks until it subsides to a more manageable level.

I’m sharing this with you now, ( during CMT awareness month) as many of you don’t realise this struggle. It’s locked behind our closed doors and only my family get to witness what this horrible condition puts me through.

I’m going to go now and try hard to sleep. Goodnight all, thank you for taking time to read this xxx

25 days post op

25 days since my operation! That’s almost a month! Where does the time go?

On Monday I can start to partially weight bear on my right foot, which will help a great deal with Balancing on the crutches. But first, let me update you on how things have gone so far.

I am now pain free and have been for almost 2 weeks. It’s been a while since I’ve taken any pain relief, and even then it was only a couple of paracetamol. I find that incredible, given the extent of surgery I have just been through. It does make me wonder if my naturally high pain threshold has kicked in and now the pain is at a manageable level for my body to be able to process without the need for analgesics. Who knows? And I’m certainly not complaining. I do however get uncomfortable in my cast. Quite often towards the end of the day as the foot swells. But that’s easily managed with rest and elevation.

I have been managing to get out of my cast for 10/15 mins a couple of times this last week. But this requires support and my youngest Daughter Ellie has been so kind in helping me with this. It’s really important that the underside of my foot is supported to keep it in the neutral position while out of the cast. Not plus has Ellie managed to do this, but she’s also been able to assist me to take care of my foot by washing it and then massaging Bio oil into the skin. Since we’ve done that a couple of times it’s incredible how good my foot now looks. The healing process has gone so well!

The most annoying thing is that I still cannot get out anywhere with out relying on someone else to help me. This is what gets me down more than anything. I sometimes feel the walls of the house closing in on me. I know it’s not forever, but it doesn’t stop the claustrophobic feeling inside. That said, I’m mastering the use of crutches and thankfully haven’t lost my footing or fallen over despite me using the wheelchair less and less. I’m trying to build up my strength and move around more. I’m not entirely sure how, but I’ve lost half a stone since surgery. How does that happen when I’ve been sat around doing very little?

My scars are healing well by all account and I’m thrilled with my “new” foot. The shape and everything. I just hope that the surgery has worked, and that when it comes to walking again, my joints are more stable and the pain stays away. I want to be able to do some of the things I’ve so dearly missed doing. The pictures below are my foot as it is today. And me mastering the crutches!

15 days post op

I’ve been home now for 15 days. When I say it like that I find it amazing that 15 days have flown by. Yet in reality as I’ve lived through these days they have really dragged.

Pain, nausea, discomfort, difficulty getting around and insomnia, all of the things that have caused me tremendous challenges. Yet I’ve found that keeping myself occupied has been one of the greatest challenges. Before my operation I asked around for recommendations of series or movies to watch. I just cannot focus on TV at all and nothing really appeals to me. I have started my cross stitch, which has occupied some time and now I’m starting to see it come together it’s been enjoyable. But there is only so much you can do in a day.

I’ve had some company whilst I’ve been recovering, which has pretty much kept me sane. My mother and father in law Barbara and Monty have both been over during week along with my Auntie Carole. Between them they have ensured that I’ve had company and also provided practical assistance with jobs in the house and taking me out for a change of scenery, from help to get into the garden to enjoy the sun, to going into town for a coffee. These interactions have broken up the monotony of the day while Wayne is at work and the girls are at school.

Despite the kindness and thoughtfulness of my family in keeping me company, I have found myself feeling incredibly down towards this weekend. I’m having to rely on my children and husband to for far more than I ever have had to before. Making meals, drinks, ensuring items are placed where I can get at them, getting clothes out of my wardrobe. They all tell me they don’t mind doing these things, but I cannot help but feel a burden. That’s why I try hard to do as much as I can for myself. Sometimes possibly putting myself at risk. I never brought children into the world to become my carers and I certainly never married Wayne for him to become one either. My heart breaks just a little each time I feel I have to ask for anything. I’ve always been so independent and done everything myself, even down to raising the girls. I’ve heard the little sighs and seen the eyes rolling as I’ve asked for things to be done. It’s a teenage thing I guess, but I don’t think they realise how each time these little things hurt me inside. They hurt me because I should be doing them myself, yet I can’t and don’t want to risk damage to the tendon that’s been transplanted to a new bone.

We’ve sat as a family and discussed this, especially how all this makes me feel, so that they can understand from my perspective. In an attempt to cheer me up, while the sun was shining my lovely family took me out for a walk ( a push) around the lake, which ended up a 6 mile jaunt and an extremely tired family and doggies afterwards.

I am so lucky and blessed to have a wonderful family.

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!