Skin Deep

A spoonful of …….energy?

One of the major frustrations of my HF is the severe fatigue that can sometimes comes hand in hand with an inefficient heart function. Since my diagnosis I’ve read a lot about Christine Miserandino’s ‘spoon theory’. Basically, the spoon theory is a metaphor for energy that can be applied to the lives of those of us who are disabled or living with a chronic illness. It’s a way of describing the amount of energy that we have when we are limited when it comes to daily tasks and activities.
As a broad metaphor it works really well. It’s also a fairly good way of explaining to people with normal energy levels what it’s like to live with an energy limiting illness.
The basic idea is that each day you have only a finite amount of energy. When those ‘spoonfuls’ of energy are used up then they can only be refilled by resting.

Healthy people don’t have a limited amount of spoons so therefore don’t have to make a conscious choice of what they can and can’t do each day. Miserandino says that,
“The healthy have the luxury of a life without choices, a gift most people take for granted”

To some extent this is true but, it also implies that there are any choices for those of us living with illnesses or disabilities. That we can actually measure our ‘spoonfuls’ of energy and apply this to our lives like some sort of mathematical formula.
Personally I’ve never found this to be the case.

My HF means that I can never be sure how much energy I’ll have from one day to another and there is absolutely no rhyme or reason to the way that what little energy I have is either,  used up or conserved on a daily basis. Add in my T1 Diabetes and that’s a whole new level of complicated! I used to have a severe nocturnal hypo then get up the next morning able to pretend I’d slept like a baby.

These days it knocks me for six.

As you can imagine, this makes planning anything at all incredibly difficult. I’m not talking a weekend at a music festival either, this applies to popping out for a coffee or sometimes just to coming downstairs or putting my socks on.
When asked if I’d like to go somewhere or book something for a date in the future I’m always a bit reluctant to say a definite yes. As much as I appreciate being asked and as much as I’d love to do most of these things, I’ve realised that I do sometimes have to let people down. I hate having to do this. It frustrates me immensely. Nowadays I always have to agree to things with the caveat that ‘I’d love to- all being well’
Thankfully most of those in my life do understand and are brilliant at working around me. This doesn’t always make it any easier for me as I find it quite upsetting that I always have to be so cautious.
I’d love to fill my life with plans and adventures but I also know that it will always come down to a choice of where my limited energy can be used and that sometimes I’ll be disappointed or I’ll disappoint the lovely people who are trying their best to spend their time with me.

My ‘energy choices’ are a very conscious part of my every day life now. If I go out for the day with my family, even in my wheelchair, then Im pretty sure that the next day will mean I have no choice but to rest.
If I have to get up super early for an appointment, for example, then I know that I’ll need a good old ‘nanna nap’ in the afternoon.
If I don’t sleep properly on a night then I simply cannot function the following day- I have absolutely no stored energy whatsoever. No stamina and no reserves.

On those glorious, (but rare) days that I awake feeling a bit like I used to, I know that I’ll desperately try to cram in as much as I possibly can. This is a trap. I realise that I’ll suffer for it but,  it just feels so good to be like my old self that even knowing the consequences I gladly walk into that trap every time.

It’s always a bit of a rude awakening when I remember my dreams. I dream that I have boundless energy and stamina-just  like when I was a teenager and could carry on for days with barley any sleep at all.
It’s been many years since I actually felt this way in real life. I am, after all a forty something, mother of two! But the amazing feeling of awakening with the idea of limitless energy and then struggling to get in the shower or get my clothes on is a bit of a tough compromise.

The medical people and others with HF patients tell you that eventually you’ll get used to your ‘new normal’ that you’ll find workarounds. Any of you that know me will attest to the fact that I’m a very practical person and I have found some ways of conserving small amounts of energy.
I have very tidy cupboards and drawers so it’s much easier for me to find things. I have a beautiful new kitchen with pull- out drawers, easy access oven and microwave and a seat so that I can sit when I have the energy to cook. I don’t waste my energy on boring things like ironing or cleaning my windows. I used to be a bit on the obsessively tidy side but not anymore!

I’ve resigned myself to using a wheelchair if my plans would otherwise involve lots of walking- this is a huge compromise for me as I’ve always been very independent and I hate relying on others. However using my chair gives me freedoms that otherwise I just wouldn’t have any longer.

I really don’t like to complain and I do realise that my HF symptoms are manageable,  most days. I’ve said before that I’m lucky in so many ways. My diagnosis has taught me to not waste my time and energy and to be a bit more discerning about what I choose to do. I certainly waste a lot less energy than I used to on stressing!
I’m an avid reader and am reading more now than I’ve ever done before. I’m writing more too which gives me enormous pleasure.

Most days, now that I’m mostly recovered from my heart surgery I’m not in a huge amount of pain. Unless I overdo things then my poor muscles don’t get enough oxygen (because my heart can’t supply as much as it once used to) and then I can definitely feel it!
If I overdo things then there’s also a risk of retaining too much fluid. The old term ‘congestive heart failure’ refers to the awful situation that can happen when HF patients ineffective heart function leads to mixed messages in the body. Basically, because the heart isn’t working as it should this then  sends signals that somehow the heart is slowing because your body is losing blood.. This leads to your body storing fluid. Not good when it fills your ankles, abdomen or lungs because your system won’t allow your kidney to dispose of it.
This is how I was eventually diagnosed. Pulmonary oedema- or my lungs filling with fluid that couldn’t be flushed out of my system. This is also why most HF patients have the joys of taking diuretics daily. (More about those in an upcoming blog about HF medications)

In basic terms, the more I do then the harder my heart has to work. The more tired I become than the more she is compromised. That’s not to say that I can’t exercise. I’m currently doing cardiac rehab classes, but it does mean that I have to be very aware of my limits.

I’m hopeful that one day I’ll find some form of balance- that happy medium of excretion and rest that I’m happy with, well, it if not happy, then at least satisfied. I’d really love to be able to go swimming or to take a tai chi class one day. Maybe, fingers crossed if I look after myself this may be possible in my future. I certainly hope so.

In the meantime, if I don’t reply to your messages straight away or if I can’t accept an invite to do something that I would have once jumped at, please don’t take it personally. I’m really not being rude. I just honestly never know how my spoonfuls will work out each day. I’ve never been a natural mathematician and there is no equation that helps me understand my bodies needs right now. I am trying my best though and I certainly don’t intend to give in or give up anytime soon.

A little bit about my poor old heart

It’s been a funny old year.
In September 2016 after a nasty bout of shingles and months of failing to recover from it, I was rushed into resus by ambulance and diagnosed with severe heart failure.
As well as the shingles damaging my left ventricle I’m also a T1 diabetic and have been for 40 years. I also have a genetic issue with familial hypercholesrerolaemia (FH). All risk factors for cardiac complications and all of which had taken their toll on my poor heart. Despite being in my forties heart age is probably around 70, bless her.

Despite being aware of all these factors my diagnosis was still a huge shock.
I’ve always had good control over my diabetes, I’d taken statins since I was a teenager and I was a busy, active mum of two.
Until I got shingles that is.
Being aware of risk factors and having some outside force bring all of those risks to the forefront are very different things.

For a while I was angry. I’d done everything I’d been told, I’d read a lot about health, invested in a healthy diet and taken all of my medication every day for years.
I was an exemplary patient and despite having a rubbish immune system and catching lots of infections I was doing pretty well.
It seemed really unfair that despite controlling and balancing every element of my life for so many years something beyond my control had robbed me of my (imagined) future.

I began to change my thinking on this when my cardiologist pointed out that if I hadn’t looked after myself so well, if I’d ever been a smoker or if I’d not had my diabetes under such tight control then I’d most likely not be here writing this.
That was a bit of wake up call and although some days I’m still angry enough to want to throw plates, I’m thankful that my years of being careful have meant that I’m still able to carry on despite my limitations.

It’s been almost a year since I had open heart surgery and 8 month since I had an internal defibrillator device fitted and I won’t lie, it hasn’t been easy. I finally feel ready to talk about it now though so that’s progress.
I had a triple CABG (cardiac arterial bypass graft) procedure on the 23rd of Feb 2017. It was touch and go whether I’d be allowed to have the surgery as my heart failure at the time was so severe and I was warned that it wasn’t going to change my day to day life. It was sold to me as a ‘patch up job to protect the parts of my heart that weren’t already irretrievable’. Phew, that was a tough sentence to hear. Especially since my husband and mum were in the room at the time.

The medical people finally decided that the surgery, despite being risky was my best option at the time as it was unlikely that I would be assessed favourably for a transplant. The surgery itself went remarkably well I’m told, apart from the damage from the virus, my heart was in good condition with hardly any arterial furring. See, all my years of being careful really did help!

If you’re strong of stomach and interested then you can watch the procedure on YouTube. I did several times before my op as a way of preparing myself and for me, it really helped.
I knew that they would stop and restart my heart. (No point signing a DNR as that would mean they weren’t able to restart my heart once they operated).
I knew that I’d be on bypass and that this was a risk in itself and I knew I’d have a bloody big scar on my chest.
I joked with one of the nurses that by the time I was discharged more people had seen my chest than most Page 3 models!

I think the thing I was most worried about being in the ICU after the op.
I knew I’d be ventilated and I had nightmares about them removing the tube. I actually have no memories of this at all.
The first thing I remember was groaning and telling my amazing husband, (who’d barely left my side and had promised to be there when I awoke), that I felt like I’d been hit by a bus.
The painkillers soon put an end to that and within a few hours I’d managed to eat a few mouthfuls of corned beef hash and drink a full cup of tea.
It’s amazing how resilient the human body is.

I spent 3 days in ICU and 4 days on a high dependency cardiac ward and was immensely proud that I made it home with nothing but paracetamol in my system.
I felt jubilant that I’d come out of the whole experience relatively unscathed. I don’t think anyone expected me to and it was cool proving them wrong.
It wasn’t as easy as I’d first hoped, I later went on to have an infection in the sight where they’d harvested a vein in my forearm, all of my scars are now pretty horrific keloid scars and I suffered with awful bone pain when my sternum started to re-knit, but I survived and at times I certainly didn’t expect to.
Emotionally it’s been tough, I think of myself as being mentally strong but the last years rollercoaster ride has taken its toll. Whether that’s because of the surgery, the HF diagnosis or the fact that my life has changed so much is still up for debate. Personally I think it all of them combined.

I try really hard to stay positive and that’s helped me massively, I’m lucky enough to have found an amazing patient- led charity, The Pumping Marvellous Foundation, http://pumpingmarvellous.org/ when I needed it most and they have supported and advised me through the toughest year of my life and even managed to make me laugh along the way.
I honestly don’t know what I would have done without them and the cherry on top is that they’ve actually let me help them out occasionally so that I can pass on my experience and help others. I’m hugely grateful for this as it’s made me feel useful again.

Anyway, I’ll draw this super -long introduction to a close now.
Thanks for reading.
Until next time,
Sarah x