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!
Ok, so CMT causes me to fall over, this is a regular occurrence. I couldn’t tell you how often I fall as this varies so much. Sometimes I can go through periods when falling over is so frequent I could have 3 falls in a day. But then other times I can go a week or more with none at all.
The reason I fall is down to a couple of factors. The first being the instability and over mobility of the joints in my right ankle. This is the most painful of my falls and often leads to a sprained ankle and mega bruising. The doctors refer to this as inversion of the ankle. Having the structure of my foot transformed is going to improve this and hopefully reduce the amount of inversion injuries.
Another way I tend to fall is by tripping over my own feet. Sounds daft doesn’t it? But seriously, because of the foot drop I often catch my foot on the ground and fly!! This is where I obtain more visible injuries such as cuts and grazes to my knees and hands. Even though these injuries fade given a few days, my poor knees are battered with scars.
So walking for me is problematic and tiring. It takes so much concentration to navigate footpaths that have lumps and bumps. I find I’m watching the floor all the time and concentrating on where to put my feet so my ankle don’t twist and send me into a big ungracious heap on the floor. I also have to lift my legs higher off the ground from my knee, just to give me enough clearance of the floor, not to catch my feet. Often when I’m tired my walking suffers and I’m at greater risk of falling.
The majority of falls I am able to prevent, and they become stumbles rather than actually falling to the ground , stumbling into furniture or frantically trying to regain my balance as I wobble about trying to keep both feet to the floor. So when I say I can go through a period of time without falling over, that doesn’t mean I haven’t had a number of stumbles and near misses every single day.
This time last year was rather challenging. I had two quite significant falls within a 24 hour period. The pain was immense! Despite falling as often as I do, I have always got away with bad sprains, never a broken bone. Now those of you that has ever sprained an ankle will know just how bad that is. It’s murder! Last year I thought I had just badly sprained my ankle, yet went along to have it X-rayed. The hospital sent me home confirming it was nothing but a sprain. So I returned to my usual duties. Walking through the pain, I still went to work and continued on my 12 hour shifts. A week later I had a letter land on the doorstep asking me to go back as the X-ray had been reviewed and they had found a fracture in my ankle!
I was put into a cast boot, Given crutches and an appointment for fracture clinic the next day and sent on my way. Immediately I felt the pressure. I couldn’t drive, so my wonderful mother in law came to my rescue and brought me home.
The next day I returned to the fracture clinic and the lovely consultant explained I had chipped part of the bone off on my ankle. It was a stable break and I could manage without the boot if I wished. That came as a huge relief! At least I could go back to normal life after 24 hours of immobility. I guess in a way it gave me a 24 hour insight into what life would be like if I did have to go into plaster. Except when I have my op I won’t be able to weight bear at all! It’s going to be a long long few months!
Today I had a letter through from the Hospital, I was hoping it would
contain my admission date, but alas, it was only a follow up letter from the
discussions in the Pre assessment clinic with my consultant.
The not knowing when my op is going to be meant I couldn’t plan
anything, both in my work life or my social and family life. This I have found
particularly frustrating, so much so I decided to call the admissions unit
today. I’m so pleased I did, as I was able to speak to someone that could give
me the date of my admission; Monday 9th September! That’s only 5 weeks,
this coming Monday! despite the fact I was kind of thinking it would be
September, I still can’t help but think how soon that date is!
Now I can really start planning and organising and mentally preparing
myself for the big day. Practical things, such as how much time Wayne will need
off work in the early days and ensuring that all of my work is at a point that
I’m happy to hand it over to someone else, that will be seconded into my post
until I am able to return to work. Also, silly little things like, getting a non-slip
mat to go in my shower and organising a key safe, so that when my family are
away at work / and school, visiting professionals such as the district nurse
are able to gain entry.
Whilst I was away in Liverpool back in May, attending the RCN Congress, I was speaking with a lovely lady on the Bloccs stand in the exhibition. Bloccs do some awesome plaster cast covers that are fully submersible in the water, allowing people to shower / bathe or even go swimming!! How cool is that? I was discussing this product with her, and mentioned my forthcoming operation and she offered to send me a sample. She asked me what plaster cast I’d be having and took my details. Several weeks later I was surprised to find the delivery of the cover waiting for me on my desk at work along with 3 sheets of stickers, a pen and some and some leaflets. Thank You Bloccs! This is going to be a valuable bit of kit in my recovery, meaning I will still be able to have a bath of shower without the risk of getting the plaster wet. Working for the NHS does appear to have some perks! Although these are not expensive to buy online, if I had needed too.
Time to start writing a list of things to do and purchase between now and then! 5 weeks and counting!!!
This morning I woke up early. 3:30am early! With a horrible aching throughout my legs, feet and arms. My muscles heavy and painful. There was no way I was going back to sleep again, not now my pain receptors had been triggered.
Distracting myself by reading the news, flicking through Facebook and deleting the copious amounts of email that had plagued my inbox over the weekend. Nothing helped, so when Wayne got up for work and brought me a hot drink up, I was able to take some pain relief ( for what little worth they are). I’m not unfamiliar with this pain, I get it frequently, but today is more prolific. The simple things like putting one foot in front of the other requires more effort, concentration and determination. I liken it to walking through thick gloopy mud, it’s possible but it’s tiring and clumsy and I just know by the end of the day the pain will be off the scale and my tiredness overwhelming.
Fatigue is another associate of CMT and a frequent occurrence in my life. This is down to the body working harder to function with inadequate muscles. This past week it’s hit me, requiring a power nap during the day just so that I can feel safe doing things like driving or even using sharp knives. It possibly hadn’t been helped by having lots on my mind, such as my impending operations when I should be sleeping.
So the professionals recommend these things to help:
Get plenty of sleep – sounds obvious right? Try telling an overactive brain that at 3am!!
Lose weight – I can check that box, having lost 7 stone so far. My fatigue patterns don’t seem to have changed, however I do feel more energetic and absolutely amazing!
Reduce Stress – Hmmmm! Yeah right! I work for the NHS, seriously? Next!
Drink water – Whilst I do drink plenty during the day I can’t say that much of this is pure water. I should make an effort to do this.
Cut out alcohol and caffeine– I get this and maybe I should try decaffeinated Tea bags, but it has the potential of turning me into a grouch without a caffeine fix!
Now on the subject of alcohol, I did have a couple of glasses of red wine last night. Not something I usually drink, but I quite fancied it. It’s stronger than the spritz I would usually have. I am beginning to wonder if alcohol can cause my muscles to feel as bad as they do. It’s not the first time this has happened, but then it doesn’t happen every time I enjoy a drink containing alcohol. I never went too excessive last night either, only a couple of glasses of wine. Maybe this is an area for further research?
Being the dutiful wife I have done a tip run this morning, to ease the pressure on our bin that was already overflowing, despite collection day only being last Friday. Over the course of the weekend I had agreed to doing this along with the shopping as Wayne had been a busy bee replacing our back fencing with the neighbour all weekend and was out on a couple of gigs during the evenings. Shopping was the biggest issue for me today. My legs not wanting to work and the pain increasing. I went out to navigate my trolley around the supermarket. Trolleys have a mind of their own, so imagine fighting to get that to do what you need too and battling with your muscles to just hold out a little bit longer.
With the shopping packed away in the back of the car I sat in the drivers seat and I could have just cried there and then! The pain is immense. I feel so tired and I still had to get the damn stuff home yet. But thankfully my daughter Ellie was home and I furnished her with that task.
Had I not completed those tasks today, not only would I have felt a complete failure as a wife and as a parent, but CMT will have won! I doubt for one minute that Wayne or my girls would have thought of me as a failure. In my mind I have a role to fill and I can’t be sitting back and not get things done. I’ve explained to my family how I am feeling today and the difficulties I’m having, as I always do whenever I’m having a “bad day”. However, I can’t help but wonder if they actually do understand how all this feels. Do they just think I’m lazy or moaning again? Or even making up excuses to have a lazy day off. Because to be quite honest that’s exactly what I feel was needed today.
Lying here with my feet up having half hour to myself and hoping the pain will subside soon, I’m watching the clock and already dreading the prospect of getting up to start cooking our evening meal. No way are we going to have takeout. A proper meal is what’s needed. So I’ll suck it all in and crack on with it, as my mind starts drifting to the thought of a warm bath this evening to help gently ease the achy muscles in the hope I can wake pain free in the morning, ready for a long and tiring day working in the NHS!
I woke up on Wednesday morning following a restless nights sleep with a huge knot in my stomach and a nauseating feeling running through my body. I lay there wishing that I could just close my eyes and pretend the day wasn’t happening.
Clutching my paperwork which contained a list of questions I wanted to ask, Wayne and I started the hour and a half drive to the Nuffield Orthopaedic Hospital in Oxford. It seems a long way to go for an operation, but the great thing about the NHS is that the patient can now choose where to go for treatment. Having been seen by orthopaedic surgeons previously that don’t have a clue about CMT, I did my homework and decided that Oxford would be the best place for me. After all, if you are going to be cut open and have all manor of things done to you, at least you can be assured that you are in the best possible hands.
Gazing out of the passenger window and watching the world go by outside as we fly down the M40, hardly any words were spoken. I was lost in my own anxious thoughts when an overwhelming feeling of wanting to call my Mom hit me! That’s when my emotions overflowed along with the tears rolling down my cheeks. It’s not quite 10 years since she passed, and I just know that if she was still here she would help me put all of this into perspective. If only heaven had a telephone!
Arriving at the hospital with only a couple of minutes to spare for a comfort break, we made our way to the pre op clinic and checked in. It wasn’t too long before my consultant called us through and greeted us with a warm and confident handshake. Mr Brown is a lovely guy, he allowed me time to ask my questions and provided reassuring answers. Then he went through what it is exactly I will be having done, as I lie in a deep sleep oblivious to what’s going on around me.
My heel is not in alignment, so this will be broken , realigned then screwed or plated in place. Then because the heel has been shifted, my big toe will need to be moved to accommodate this, with bones broken and screwed back in their new positions. Then, if that wasn’t enough, he will be making an incision at the back of my knee to lengthen my Achilles’ tendon then taking the tendon from the inside of my right foot, transferring it through to the outer side of my foot to do the new job of pulling my foot outwards as I walk.
All of this work will see me in plaster for 3 months. The first 4 weeks of that will be non weight bearing through my right foot. Now that wouldn’t be so bad, but my surgery is starting on my stronger leg first, as the joints are more unstable, leaving me with my weaker leg to recover on. This worries me a great deal! After the initial 4 weeks I will then be able to gently put weight on my foot, but it won’t be until the end of the 3 months that I will be relearning how to walk.
Following on from the meeting with Mr Brown, we were then called through to meet an Occupational therapist called Isobel. It is Isobel’s job to discuss how I will manage after surgery with the practical daily things we take for granted, such as showering, cooking, getting on and off the toilet or out of chair at home. I could feel my anxiety eating away inside me and I could hardly hold in my emotions as I asked questions and listened to her advice. I went on to explain to Isobel my fears of having my independence taken away and the difficulty I have accepting help from even the closest people in my life. I have never relied on anybody, I’ve been so independent throughout my life, it fills me with dread to burden anyone. I couldn’t hold it in any longer my emotions overflowed again for the second time in the day. I was beginning to feel like a blubbing wreck! Isobel was so kind and got me back to putting it all into perspective, but one thing was quite clear, I will need help and I am going to just have to be strong and accept it!
It looks like I will be leaving hospital with a toilet frame to help me get to my feet as the toilets are quite low. A couple of frames ( one for upstairs and one for downstairs) some crutches and I will need the use of a wheelchair, which we will be purchasing at some point soon. This makes me feel about 98, never mind 38!!!
After the meeting with the Occupational Therapist, I then met a lovely nurse called “CaroLYN not CaroLINE” Sister Carolyn was there to take me through my past medical history, and provide me with the hibiscrub needed to wash away any “bugs” that may be on my skin (MRSA) prior to surgery, to prevent this causing my wounds any kind of infection. Carolyn’s personality was rather bubbly, which pushed aside my worries and made them feel like they were distant memories, by bringing me back to the here and now. Once my history was documented, all that was left for me to do was have bloods taken as well as an ECG, height weight etc.
I entered a room where I met Anna, a healthcare assistant that would give me my MOT. As I stood on the scales I felt quite proud of myself as she read out my weight. 18 months ago standing on the scales in front of anyone filled me with dread, but having lost just shy of 7 stone, I felt like doing a small victory dance (had it not been for the fact I’d have probably ended up face planting the floor!) My blood pressure and other stats were pretty much text book,as was my ECG.. I guess that means I passed my MOT!!!
Nearly 3 hours after arriving at the hospital we were heading home. My eyes getting heavier and heavier until I drifted off, for the remaining journey home; catching up on some of the sleep lost from the night before.
Firstly, I’d like to thank you for being here. Just the fact that you’ve taken time to visit my page means a lot to me.
You may be wondering what on earth this is all about, and the truth is I am asking myself the very same question! I’ve never done anything like this before, so why now?
Well, most of you may be well aware that I have an Hereditary condition called Charcot Marie Tooth Disease (CMT). This is a genetic fault that sits on the X chromosome and has been passed on to many members of my family, including my father.
My diagnosis came at the age of 18 following nerve conduction studies, as the blood test diagnosis wasn’t available at that time. This was a point in my life where I was able to wear heels, go ice skating, roller blading and many other things that I took for granted and have long since lost the ability to do. That’s because CMT is a progressive disease, causing muscle wastage of the hands, legs and feet due to over myelinated nerves.
As a young girl, I grew up witnessing the daily struggles my father had, not understanding the cause or the prognosis. But I distinctly remember him on crutches and in plaster on a couple of occasions. All I was aware of was that my Dad had quite major surgery to “fix”his feet and legs. But like the hero my Dad is, he kept a stiff upper lip and did his best to maintain his independence whilst in the recovery process. One memory that springs to mind was him working away at knocking through the old cupboard to extend the living room for our fast expanding family. His leg in plaster and crutches not too far from his side…. he was invincible. I wished he would stop, as the noise was unbearable over the film Jaws we trying to was watch at the time, yet I admired his sheer determination.
Here I am all these years later, pretty much the same age my dad was when he had his operations, with my own daily struggles and facing similar surgery that my role model had years before. I’m no stranger to surgery, I’ve had my share of it over the years. Surprisingly the surgery isn’t the problem for me, as a nurse I know what to expect in relation to pain relief, anaesthetics and the procedures leading up to and during surgery. Unlike any other surgery I’ve ever had in the past, this one is going to be most challenging for me as I feel I will be loosing my independence, and having to accept that I will need assistance for many weeks after this operation. This is what keeps me awake at night. This is the source of my anxiety and panic attacks. This is that big knot of worry that cramps away in my stomach at the very thought of not being able to do very much for a while.
So far I’ve managed to put surgery off for many years, always finding an excuse…
“My children are to young and need me”
“I’m focusing on getting through university”
“I want to get some nursing experience first”
Well guess what? I’ve kinda run out of excuses now. I have to face the fact that I need this surgery, so that in the long run I can maintain my mobility and thus my independence for many more years to come. With out it my feet become weaker, joints become more unstable and my feet will continue to deform. I will fall more often than I do already, putting the career I’ve worked so long and hard for at risk.
That’s where this page comes in… I thought it would be helpful for me to document my journey through the surgery and out the other end. I want to record my thoughts, fears, feelings and emotions. I’m hoping that it will help me make sense of all this, keep me focused on my recovery and in some way help anyone else that has the same condition and facing similar surgery.
So please stay tuned, I will be updating at regular intervals. I will explain in my next post what surgery I will be having and talk you through my experience of today’s preoperative assessment. You can also follow this page through Facebook. Thank you for taking time to go along this journey with me.