Afraid to sleep

Monday 15th April 2019:

I’ve just realised last night was the first one since my funny do that I didn’t worry about going to sleep. I just drifted off like your average Joe, not a care in the world…kind of.

Previously, I’d been afraid to close my eyes for fear I might not wake up again. I’d lie still, trying to relax, but would become increasingly aware of my heart beat until it was thumping louder and harder in my head, almost like it was trying to escape…pretty hard to ignore. And let’s face it when the pump for your whole body fails you it’s not difficult to understand why you obsess over it. But last night, after settling under the duvet, I didn’t even think about it once, or check my heart rate on my watch. Ignorance really is bliss.

Victoria, one of the Heartbeat nurses, told me to try and disregard my heart rate during rehab too and instead listen instinctively to my body. If I feel ok I probably am…cue more treadmill running and today for an extra 30 seconds than on Friday. I dream of running a mile again…but for now it will have to remain a thing of fantasy.

Walking and going up and down stairs continues to become easier though and my kidney infection seems to be responding to the antibiotics. No more trips out with a hot water bottle in tow…just as well given I left it in the bloody cinema the other day. Come to think of it I did wonder what that thud was as I got up from my chair to leave, but I had been watching Dumbo so I passed it off as an elephant sound effect.

Today was pay day which I had almost forgotten about as I feel so far removed from work at the moment. Getting back to the grind will be the ultimate tonic for me. Once I can return I’ll know I’m fixed. In the meantime, I’m keeping my fingers crossed as a few of the news stories I wrote last year have been put forward for online awards (watch this space) but my current goal is merely to watch my children enjoy an Easter egg hunt or two over the holidays, without feeling too breathless or exhausted.

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Taking a breather

Friday 12th March 2019:

It’s been an eventful week…in my new slower-paced life at least.

I’m now legally allowed to drive again so that’s given me back a bit of independence. Driving…on my own…just me! It’s been like passing my test for the first time all over again and looking over my shoulder to see there’s no instructor in the passenger seat. Let loose! I love driving. I might venture across Europe over the summer…if I can get a travel insurer to cover me…ever again.

Even more fulfilling than driving was persuading Matt, my Heartbeat gym instructor, to let me run on the treadmill yesterday, instead of walk. Oh my God, it felt amazing! However, I was given a strict instruction not to let my heart rate tip over 155 beats per minute during the three-minute rep. I didn’t take my eyes off the monitor on my watch. I made it to two minutes and 30 seconds before it shot up to 160. You’ve seriously never seen a person move more swiftly than me pressing the buttons to slow the machine down until I was at a steady walking pace again. I felt absolutely fine but I didn’t want to chance it. Get me…control freak, following orders. Now that’s progress.

I suspect further changes are afoot as I also had my first NHS Health Coaching session today with Chris. The first question he asked me: “Do you ever breathe?” I guess I didn’t need to tell him my school reports always said: “Susan (my Sunday name) talks too much!” or that just about everyone in my life is always telling me to slow down. Chris very much had the measure of me after just one hour…runs on adrenaline, fills every spare minute…not to mention gap in conversation. Now I know where my children get it. I’ve got three goals this week…reduce caffeine (gulp), take more breaks and…you’ve guessed it…breathe. He’s as bad as my watch!

I’m learning to listen to my body though…slowly. Most days I’m taking an afternoon nap wrapped in the pink and green (odd colour combo I know) blanket my great grandma crocheted…it’s always a go-to comforter. I also stopped my yoga session halfway through on Wednesday because my kidney infection was making me feel grim. But as well as holding me back in some aspects of my life, my body is also recovering incredibly well in others. When I was first out of hospital I had to stop several times while ascending a flight of stairs. Now I can almost bound up them…just don’t tell Matt. After all, as Chris reminded me, it’s only been five weeks since my heart attack and I’m already frustrated and questioning why I’m not back to normal already…in fact now isn’t soon enough, I always want things done yesterday…last week.

This is quite some learning curve.

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Tying up loose ends

Monday 8th April 2019:

More cardiac rehab joy today and more baking for the fabulous nurses and my heart attack buddies…this week it was butter and sugar-laden chocolate brownies, which they all felt guilty about scoffing when we were shown a video about coronary heart disease and fatty build-ups in arteries…whoopsies. It’s a damn good job everyone is on statins!

Thankfully, I’ve had no more indigestion or chest discomfort. In fact, I haven’t used the GTN spray for more than a week after its infamous sports shop outing. The new drugs are serving me well.

I have, however, got my seventh UTI since Christmas and now a kidney infection. I’ve only had one bloody glass of wine following my heart attack four weeks ago, I’m drinking water like a fish and let’s face it, it’s not like I’m having sex at the moment either for fear of pushing my heart rate sky-high. Honestly, you so wish you were me right now, I can tell.

It’s not all bad though because my GP has agreed for tests to be carried out on my kidneys, starting with an ultrasound in case it could be linked to my sarcoidosis. She’s also had a look back through my records from five years ago, when I had my neurological issues, and added a note to say there was probable sarcoidosis involvement then too. This is much more encouraging than the time a hospital registrar told me, as I lay in resus barely able to speak or move: “Anytime you want you can stop this, it’s just stress.” I lodged a complaint about her, don’t you worry!

I’ve also finally got an appointment for my cardiac MRI in Taunton, to check how badly my heart is affected by sarcoidosis, which will be at the end of May. This month, I’ll also undergo lung function tests ahead of a meeting with the respiratory specialist in July.

Things are starting to come together, I feel a bit more in control…and I’ve lost another four pounds. It’s probably muscle tone and water given I’m not running at the moment and I’m peeing for England, but we shall gloss over that.

More importantly I am feeling encouraged by my blog, not least because it’s had more than 8,000 views by 5,000 of you, but also as it appears to be having the desired affect.

One reader…someone who I went to secondary school with…got her heart checked having previously ignored ongoing chest pains, another university chum recently pulled out of this year’s London Marathon due to ill heath after hearing my story. Many more pals, colleagues and acquaintances have shared similar health problems with me…giving us a new bond.

Then there are my fellow runners – Seren, Nat, Donna and Liv – who have all said they’ve thought of me in their recent challenges, from 5Ks to half marathons. This means more than you know and I do hope you’ll join me for a little trot out before the year ends.

I’m nothing if not determined.

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Yogi, I am not!

Thursday 4th April 2019:

After missing my last rehab session due to my most recent hospital admission (I’m getting a bit of a reputation), I made it to my third cardiac gym class today…with the new kit my family managed to select and buy while I was lying on the floor of the sports shop after overdosing on GTN spray due to indigestion, and desperately trying not to become hysterical with worry. What a plonker!

Of course my ultra-supportive heart buddies didn’t see the funny side…much. Actually, they thought it was more hilarious than anyone else I’ve had the misfortune of mentioning it to. It’s funny because it’s true…and they know it more than most. They are still total gits!

In all seriousness, though, I do love my new crew. I can’t help but beam as I pedal and row my way around the circuits, and we laugh so much my cheeks ache when I leave each session. And it’s not just the patients, but the volunteers and this week it was Matt the instructor’s choice of music. Note-to-self, Matt: Elvis’ Love Me Tender is not the high-octane track you need to hear when you’re trying to pump the weights with sass. Though one of the old chaps…let’s call him Fred…did a spot of free-style dancing which did make my heart skip a little beat (in a good way for once this month).

You’re seriously not supposed to enjoy working out this much, are you? Who knew there were genuine advantages to having a heart attack?

Having said that I’m still not fully convinced about relaxation, given I usually run on about 80% adrenaline. Last night I listened to a spot of “sleep meditation” and it actually kept me awake. I also gave yoga another go yesterday but the half “headstand pose” came seriously close to wrecking my bouffant quiff.

I’m definitely more Boo Boo than I am a Yogi but I’ll keep on keeping on.

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Heart attack or heartburn?

Monday 1st April 2019 – April Fools’ Day:

Indigestion. That’s what my last little episode has been put down to. A combination of my heart drugs causing increased stomach acidity and me effectively then overdosing on GTN spray to banish what I assumed to be chest pain…which then increased my heart rate and made me breathless, hence prompting a panic attack in the middle of a sports shop.

Now who looks the fool? Even my good friend Rocky hilariously asked: “So you just needed to burp?” Yes, yes I did! She’s not the only one who has used humour to help us cope…some jokes have been wholly inappropriate yet have definitely brought a welcome smile to my lips.

The trouble is, I experience a heart attack in the same way I do heartburn so it’s pretty tricky to distinguish which is which. The nurses have all told me it’s important I don’t ignore any similar signs but heartburn should disappear with my new friends Gaviscon and Omeprazole gastro-resistant capsules (move over GTN). And most importantly…and certainly easier said than done when you’re already freaked out by your badly behaved heart…I have to stay calm.


I am, however, happy to report my sixth urinary tract infection since Christmas has subsided with the latest dose of antibiotics. Not a clue if that’s related to any of my recent medical foibles but at least I’m finally getting a good night’s sleep, and not bumbling off to the loo in a half comatose state every couple of hours.

Given sarcoidosis appears to be the main medical culprit for my shit start to the year, I am going to try and control it with an anti-inflammatory diet…even it’s just a placebo I’m willing to give the sugar pill a whirl. Well actually there won’t be any refined sugar or saturated fat.

I would usually say “kill me now” but you and I know I very much want to live.

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Oh, Mother!

Sunday 31st March 2019:

This was meant to be a positive blog day about what a wonderful Mother’s Day I’d had sipping afternoon tea, and tucking into finger sandwiches, cakes and scones with my mum and my mini-mes. A day I had so looked forward to.

My first mistake (20 minutes after the above picture was photographed) was going to a major sports shop…which shall remain nameless, but I’m sure you’ll know the one when I mention zero-hours contracts. No wonder the staff look happy.

I should have turned back when I got chest discomfort and breathlessness walking up the stairs. Instead, I stopped a couple of times til I reached the top, now with beads of sweat forming on my face and neck, and in typical understated Paz-style, threw off my fox fur coat (which is vintage and was my gran’s before you recoil in horror), administered my GTN spray and laid down flat on the floor…which thankfully looked relatively clean. Total drama…though no-one batted an eyelid. I didn’t even frighten my kids who kept bringing over gear in my size which they thought I’d “look good in” at my rehab classes.

After half-an-hour or so it passed and I eventually made it back home. I went for a rest on the bed before it annoyingly and frighteningly returned…three more times in quick succession, in fact. This time the chest was tightening too. Three uses of GTN in a row and it’s time to call 999. Luckily we were in the car after two and by the third, Andre was wheeling me through the doors to A&E.

So, now I’m back on the coronary care unit where the staff must truly think I’d much rather be than at home. It’s actually a bit embarrassing. I’ve been in six of the eight bays now…nearly a full house! Oh, and my old friend the commode is back.

My children delighted in telling me they thoroughly enjoyed the “extra dark chocolate cheesecake with yummy, gooey caramel on the top” and “blueberry mousse with sticky apple in the middle and pastry” when I called them earlier.

I’m finally settling down with a couple of slightly bendy pieces of toast and a rather average brew. But I’m safe, I’m being monitored and the blood tests revealed there were no signs of another heart attack, so let’s wait and see what delights tomorrow brings.

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Ch-ch-ch-changes

Thursday 28th March 2019:

It was my second day at rehab today and this time I dressed the part. I hadn’t received the full letter explaining what the first session would involve and I just assumed it would be a sit-down introduction. They must have secretly rolled their eyes at me when I rocked up in ripped jeans and a white t-shirt. If I’d have seen me I would definitely have whispered, under my breath, something akin to: “Who’s she come as? Bros!”

The class was just as enjoyable as the last session and I’ve made a few more “heart attack buddies”. The bond is inexplicable – they totally get it! We all know where we’ve each been and the way it’s changed us. I know there’s no-one in that gang who won’t alter something in their lives now. Some have already quit smoking, others are looking at changing their jobs, while a few are planning to take that holiday they’ve always promised themselves they’d do “one day”.

Collectively most of us gave meditation a go for the first time today. I sat on the back row like a class trouble maker trying my best not to snigger at the sight of such an eclectic bunch of unlikely Buddhas. However, we were all in it together and once we stopped being self-conscious it was actually quite useful. I’d much rather have been on the white sandy beach the teacher was asking us to imagine we were sinking our toes into but I guess it was a close second, and better than the Yeovil actuality.

I’ve also booked my first session with a life coach today…another NHS service I had absolutely no idea existed until the nurse practitioner at my doctor’s surgery, Leah, suggested it might be a positive step for me. The scheme is aimed at folk who have experienced a serious medical episode or illness. My coach, Chris, will hopefully enable me to make decisions about every aspect of my existence. It’s about taking back control and realising what’s important to me and building a positive future (something I had doubted even existed three weeks ago).

I feel so lucky to still be here and there was nothing better than taking an unaccompanied stroll…completely on my own…down Sherborne high street in the sunshine earlier…headphones on and tunes blaring. Ok, so I did have to park my bum on a couple of benches on the way down the hill from home and check my pulse to reassure myself I was still in the land of the living, but it was at least some momentum (in more ways than one).

Another smile-inducer was receiving my “get well” cards from work and the realisation that many colleagues (and friends) are reading this blog. They were even signed by the BBC Online team in Birmingham who usually sub-edit the news stories I write before they are published. Touched doesn’t even come close…though I am now conscious they are undoubtedly silently editing my copy…right…now!

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Tackling chores and bloody insurance

Tuesday 26th March 2019:

Today I managed 20 minutes of much-needed weeding in my garden with my wonderful friends Viv and Rachael who offered to come round and give it a tidy-up…well Viv did, Rachael got dragged into it as I’d embarrassingly forgotten she was coming. I must start writing these things down. Usually I’m good at keeping dates and meetings firmly in my mind but I’ve been more forgetful of late. Thankfully she still gave me the Easter biscuits she’d brought.

After my Vitamin D fix, Viv took me out for lunch. I’m like Lady Muck being driven everywhere at the moment because by law you’re not allowed to get behind the wheel for four weeks after a heart attack if you didn’t require stents fitting in furred-up arteries…which I didn’t. It’s frustrating…and don’t even talk to me about insurance. Mention “heart attack” and it has the same effect on inflation as the word “wedding”.

Breathlessness still gets the better of me from time to time and I’ve no idea whether it’s my dodgy ticker or sarcoidosis at play. Luckily, I’ve had no chest pains today and I’ve been monitoring my heart rate which seems good.

You see, I used my current medical state as a justified reason to buy an all singing, all dancing watch that monitors just about everything. It even tells me when to breathe, just in case I forget.

However, it can’t cook dinner so I decided today was as good a day as any to rustle up my first family meal, post attack. The kids requested Malaysian chicken curry…admittedly a marked improvement on hospital food but now I need a sit down.

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Confidence restored

Monday 25th March 2019:

Well, what a brilliant day!

First of all I revisited some of my nurses and took them a home baked Victoria sponge…they love a bit a cake.

I was also told my lovely work colleagues, and a woman at my husband’s office, had had a whip round adding more than £120 to my non-runner half marathon charity fundraiser.

I also…and probably most excitingly of all…had my first cardiac rehabilitation class at hospital but thankfully as an outpatient this visit. I had no clue what to expect and was initially surprised to find I wasn’t the youngest member of Yeovil Heartbeat. I’ve actually got 10 years on one of my classmates…I know!

The session started with a one-hour introduction with a physiotherapist, gym teacher and cardiac nurse, Victoria, who I first met two days after my attack.

Heart monitors were strapped to my and another newby’s chest and we were first made to carry out an assessment which involved us stepping up and down on a gym step to the beat of a glockenspiel, which gradually got faster over the course of 15 minutes. And I’m sure it was a recording of someone actually tinging the keys of a glock rather than a sound effect as whoever was responsible occasionally missed a note, which gave us a smile.

After an hour we were joined in the gym by about 20 other patients of various ages…I was definitely on the younger end of the scale. I’d put the oldest in his 80s…either that or he’s had a hard life.

We started with a 15-minute warm up of stretching and marching, followed by 30 minutes of circuits on rowing machines, bikes, treadmills, cross trainers and weights, with a 15-minute cool down to end.

My heart rate got up to 134 beats per minute and I even worked up a bit of a sweat. The endorphins felt incredible. I was so bloody happy. At first I was worried I was pushing my heart too much but was quickly reassured I wasn’t overdoing it and simply working at a steady level for me.

All I’ve heard from family and friends is the importance of rest but being allowed to actually get my body pumping in a safe environment was a huge relief. It’s the best I’ve felt mentally for two weeks. I’m beginning to think I will get “back to normal” and more importantly run and play netball again.

The group is also a perfect way to share experiences and realise I’m not alone in this alien world of recovery. We also get a cup of tea and a biscuit at the end which obviously helps.

Me and the 50-year-old newby hi-fived each other at the end of the session. I think I’ve made a new friend. I had a quiet tear. I can’t wait for my next class on Thursday.

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One step forward…two back

Sunday 24th March 2019:

Today, I was supposed to run the London Landmarks Half Marathon. Although I know it’s better that I had my heart attack two weeks ago and not as I crossed the finish line, psychologically this is a set back.

In more positive news, I’ve raised almost £550 for Alzheimer’s Society (huge kudos if you sponsored me), I’ve also received further wellness packages from biscuits (thanks Nikki) to home cooked chilli (you’re a star Edna), the sun is shining and I’ve joined a sarcoidosis support group.

This, at the moment, seems like a step in the right direction but hearing other people’s experiences is also a tad unnerving. Better to know though, right? It’s like when I was in hospital I made sure the nurses and specialists knew I didn’t want anything either keeping from me or dressing up. If the prospects are bad, for me it is better to face them head on. Total control freak. Though knowingly totally out of control.

Five years ago I experienced left-sided paralysis of the face and limbs, my speech was also temporarily affected…like I’d just downed 20 gin and tonics but without the initial hedonism or latter hangover. I was hospitalised for a short time and spent several months off work. Initially, it was treated as Bell’s palsy but later put down to stress. I also suffered chronic fatigue…which frankly I believed was a Mickey Mouse illness until it struck.

There is now a train of thought that this episode could either be related to my heart attack or…and I fear this the most…my sarcoidosis. Is it possible I have had this inflammatory autoimmune disease on my brain – neurosarcoidosis? I certainly intend to find out.

It is undoubtedly further proof that we have no clue what’s going on, on the inside. In fact, on my initial admittance to A&E for my heart attack I was questioned twice over my age and whether I was really 40 as I look “so much younger”.

Don’t judge a book by its cover.

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