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!

Taking a tumble

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!

Date confirmed! Planning Commenced!

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.

The Bloccs waterproof protector, supplied kindly by the lovely people at Bloccs!

Time to start writing a list of things to do and purchase between now and then! 5 weeks and counting!!!

Challenged by my own muscles

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!

Curse you CMT!!!