Welcome to my first ever blog.
I am writing this blog to help educate and raise the profile of Invisible Illnesses and Heart Failure, and helps people, especially parents, adjust to their new life more easily.
Remember a diagnosis does not define who you are.
If this enables change then I will feel my goal has been achieved xx
Balancing being a full time working mum was challenging enough without the unexpected surprise of a new chapter in my life heading towards me like a fast moving juggernaut with no breaks!
Looking back, life has certainly changed in our household in the past 12 months in so many heart wrenching ways. I am going to just focus on one today.
In late November 2015 I went to the Dr's for a routine appointment and I left being told I needed an ECG.
Following my ECG I truly could not believe what I was being told by my GP. She explained that she was referring me to a Cardiologist for a Echo-cardiogram.
I was a busy, energetic, passionate person who loved buzzing around getting things done. At work, I never stood still for a moment as I had so much I wanted to achieve.
I juggled work, which i adored, with my family life because that's just what working mums do.
Two days before Christmas 2015 I had my first Echocardiogram.
I was given the news by the Consultant Cardiologist that I had a very large heart that was not pumping very well, and that my electrics of my heart were not working either. I was prescribed medication to start taking with immediate effect (which would be increased) and to not exercise.
On the 5th January 2016 I was diagnosed with Idiopathic Dilated Cardiomyopathy, Left Ventricular Systolic Dysfunction and Left Branch Bundle Block which had resulted in Severe Heart Failure.
I learnt that it was most likely caused by a virus damaging my heart and that I had 20% heart function.
The plan was to meet with a Heart Failure Nurse fortnightly in order to get me on track with my treatment as soon as possible.
I totally got the plan of action, I worked in a field where wellbeing and behaviour change was my bread and butter! But what I hadn't envisaged was that my whole life would now turn upside down in a few short months.
I now had to get my head round a life changing diagnosis and start taking a cocktail of life saving drugs with long names that I couldn't even pronounce at this stage!!
My body went from being a passionate ball of energy to a sloth like energy-less mass of confusion. This was due to being put on Beater Blockers and other medications which had really frustrating side effects.
However my head was telling me to continue to do what I always do and push through as it will pass.
Yep I was in total DENIAL !! I could talk a good talk about this new thing in my life to family, friends and work colleagues as I was a good actress, however I had not processed quiet how big this was really.
Trying to get your head round a diagnosis is one thing, but then to be told it was NOT being caused by a bad diet, drug or alcohol abuse, or stress, or anything like that was hard, as I could't fix it!!!
I was used to, in my line of work being able to 'fix' or look at solutions for people and this wasn't that simple. I wasn't in control of my life and I hated it.
I didn't need to go on a low cholesterol diet, stop smoking or start exercising. The opposite in fact; my Cardiologist nearly had heart failure himself when I shared my passion for Spinning, which I had stopped recently as I was feeling a little more tired than usual! Yoga my second passion, was also knocked on the head instantly too - I was gutted!
I also had to come to terms with being told I was not allowed to fall pregnant again, not that I had planned to, but yet another choice had been taken away from me.
I was on such a strong treatment plan and my medication was being upped quickly to maximize optimum result. My body was apparently able to cope with this intervention and apart from a dodgy ticker, my organs and the rest of my body were fit and healthy; however by April I got really ill and my body eventually gave in and decided to give in and tell me I needed a long overdue break to adjust to my new diagnosis, medication and the side effects too.
So nearly 12 months on I can safely say that we as a family have adapted.
I have currently been able to avoided surgery and my heart function has improved with the incredible support from my heart team and being on the optimum levels of medication too.
I continue to learn on a daily basis about myself and have good and bad days - but I prefer to call these my rest days!!
I am determined to be as normal as possible, yes its frustrating but I refuse to let it beat me.
That's why i'm so passionate to share my personal survival tips for adjusting myself and my family to a new way of life with an Invisible Illness.
You can do it, just trust the process!
My Survival Tips
Communication is key. Sit down with your children and explain whats happening. This is essential for them to trust you, feel included and be able to understand why things may have changed.
If you don't tell them they will usually come up with their own conclusions which is often more scary than we think and they will feel left out.
Always remind your children that no question is a silly question, this then allows them to chat freely about it. If you don't have the answers then say you will find out.
Adapt and adjust, when you are needing rest days, suggest doing more story times, games, photo challenges and relaxing watching movies.
Remember to gauge their age, if the children are very young then simplify your language ''mummy has a tired heart so she has medicine to help her feel better, mummy will need to rest but that's ok....... '
Older children and teenagers need more information, I know my Heart Failure Nurse was really happy to talk to my children about my diagnosis and what's happened. This way they get the clear facts and not the emotion.
Family and Friends
Your family and friends will have to go through a process of acceptance and change too. They will need to learn to adjust and this will take some people longer than others, especially if like me you look well.
Remember to educate them in your SPECIFIC condition, there are so many different heart diagnosis and I know mine took a lot of learning about, as it was caused by a virus - this was one of the hardest things for people to get their heads around.
Communication – this is key, unless you chat to your family and friends they won’t necessarily know how you are truly feeling and visa versa.
Keep communication open - many people withdraw from you as they don't know what to say or do.
You may have to make the first step and explain you won't be going out dancing the night away currently, but you still want to be invited to things.
You already feel isolated in so many ways and some friends will have dropped off the face of the planet!
So educate people, explain why you need down time before you go out or why you need to leave earlier. Change things - sit for a meal rather than go on a pub crawl. But also explain to them that if you cancel its not personal its because you have no choice - your health now has to comes first.
Your Health and Wellbeing:
Your well-being and health is essential. Accept that you now need to look after yourself.
My tips include:
*My iPhone – this is my best friend in so many ways, I use it for my medication reminders, medical appointments and when I’m resting - good old social media has been a god send!
*AVOID negative people - they suck the life out of you, which is the last thing you need right now. Maintaining your energy levels and positive wellbeing is your priority now. If you have to see them, keep it brief!!
*Book into have your Flu and Pneumonia vaccinations as you need to protect yourself as much as possible. I'm petrified of needles so if i can do it, so can you!
*Meditation and daily gratitude’s - they really helps with positive mindset, help you through any anxious periods and low days. This is not for everyone I know, but I’ve always loved meditating and it was part of my original survival guide prior to becoming ill, so it was just lovely to be able to have more time now to do it and know how much it was benefiting me.
*Keep Active – every little step helps, build up over time, but listen to your body and stop when you need too.
*Weigh yourself every morning - you know why! contact your HF team if needed.
*Take your medication within the correct time frame. Yes I've cocked this one up once or twice with scary consequences.
*Rest - Admit when you need to! Especially between tasks or activities.
The stronger you get the more you will forget this but then it will come back and bite you on the bum! Adopt the Spoon Theory idea.
*Comfy clothes – my abdomen stores my water rather than my feet, hence why rather than my usual size 12 I can look like a puffer fish at times, which is so sole destroying however adapting my wardrobe has been a godsend as I need to be comfy to feel relaxed and well. You can still look good and not dress like an OAP I can assure you!!
*Eat well - but avoiding salty things, I try not to add salt to cooking unless it’s essential. With snacks I find this quite difficult as for someone who adores black olives this is a real challenge! just eat in moderation.
Follow any dietary advice if it has been recommended.
*Have a cosy, comfy 'you' area. Fill it with warm lighting, snuggly blankets, candles and nice things. This is a great place to be when your feeling pants and you need to relax, feel safe and escape.
*Plan your routes – I have learnt this the hard way. Know the closest parking to where you need to go and the rest areas too.
*Don’t be afraid to say ‘No’ or cancel things. Friends and family will learn to adapt but you have to communicate with them so they know why.
* Make calls short, use hands free or Zoom/Skype - My classic is talking on the phone for too long with my hand elevated, or being with people for too long and laughing too much!
*Adapt your tasks i.e. taking the washing out ….. I have a wheelie basket to take out as I can’t carry and lift heavy stuff now as I get so breathless.
When prepping meals, sit on a bar stool at the kitchen top and chop.
*Allow yourself to express your emotions; you are going to go through many extremes. Its ok, it’s normal and over time it gets better I promise. TRUST the process and seek support if you need it from the GP.
Knowledge is power, you are the person who knows your body best so learn about your diagnosis and how to manage your condition. Ask questions about your new diagnosis, the medications, the side effects and other stuff as I know as a mum and wife I needed to know all of this so i felt more confident in my self.
Yep this is our new life, so lets adjust and look after ourselves.
You will have good, bad and crap days.........
Celebrate the good days but try not to overdo things (easier said than done when you have kids and are a bouncy individual, I’m a classic at cocking this one up, time and time again!!).
Get into the habit of positive self talk - this goes a long way especially when your feeling pants.
Put a plan in place for those bad days so others can help you with the children, dogs, housework etc. Partners are key in this, but if you also have a strong network friends and family they are essential too. If not local support is available if you ask for it.
I would suggest writing things down that are an issue, then write a solution next to them. I found it really hard to adapt as I am a very independent person, but now my husband and I have a good plan in place. We are a tag team and it works well.
My husband hoovers and mows the lawn always and does the shopping with or without me depending on how I’m feeling. Alternatively you may prefer to do online shopping especially at Christmas!
Bulk buy and freeze meals so that you have nutritious meals in when you feel pants. Chilli’s, Lasagnes etc are all great freezer meals.
If you know me, you will know I’m not into group meet ups or anything like that, however joining an online forum with people who are also in the same boat has actually been really helpful.
I dip in and out, post positive things and ask random questions.
I use a really good site and charity called Pumping Marvelous and Heart Failure Aware; they are truly brilliant and are doing amazing work.
I have also found my Cardiologist and Heart Failure Nurse fantastic, i feel they both know me so well now and i can ask them anything.
Some people may prefer to access their local temple, church, baby group or pub for support. Remember its up to you.
If you would like information on joining a 6 week Invisible Illness Course or Wellbeing Coaching please do get in touch with me at: email@example.com and follow me on Intragram @cindy_barefoot
I hope this blog has enlightened you and has been helpful to those of you who have or live with/support someone who as an Invisible Illness.
Cindy the Barefoot Coach x