I'm tracking some of my heart failure symptoms via colourful cross-stitch. Currently on day 4 of an anticipated 365... Wish me luck!
I've written a bit more about this project (aka harebrained scheme) on the Hearty Tales blog, if any of you would like to read more/share your thoughts about symptoms and symptom tracking. I'm always VERY appreciative of your blog comments 
What a fun and interesting way to track how you’re feeling! Good luck with it - a year is a long time to keep it up.
Yes, I'm realising that myself now that I'm 4 days in! 😅 I might stop after six months if it becomes too taxing, though I would love to see the pattern of Xs over the course of a year. We'll see! It's an interesting little project either way - really making me think already. I would love to see some other hearties come up with their own ways of visualising their experiences. I keep seeing people on social media who knit the temperature or sky colour into a scarf, knitting one row a day for a year, and I wonder if there's something similar that could be done for symptoms? Cross stitch appeals to me because there's something a bit scientific about using an X, even if it is sewn in rainbow colours. Ha!
A beautiful effort. I hope you have the occasional good day too!
I'd say I've been having better than usual days so far 😅 Many of these symptoms are very minor and don't have much impact on me, so multiple crosses don't always mean I've had a really bad day. I'll be surprised if I have a day without breathlessness though - stocking up on dark blue thread, ha!
Is focusing on symptoms everyday such a good idea ? wont it become hugely depressing seeing it repeated over and over 🤔 I do textile crafting myself which is a good distraction but would rather steer clear of health related stitchery 😉
Yes, that's another one of my concerns at this early stage, but so much of my medical care relies on me being aware of my symptoms and reporting any changes in them so I'm always monitoring them anyway. But yes, this definitely forces me to acknowledge them quite directly every day. I wouldn't always have wanted to do something like this, but at the moment the emotional challenges feel easier to cope with when I address things head on. Would love to see pictures of your textile crafts sometime
Hi! I know logging my symptoms has definitely helped me and my doctors see patterns we didn’t know were there.... and to see that I have good days too. If you don’t fancy a year - the #100daysproject is a great goal. It’s on Instagram, free and has a website.
Yes, I should have thought of that! I follow quite a few folks on Instagram who have done 100 day things. Next time?! 😂
Great to hear that tracking your symptoms has been helpful and not all negative. How do you keep track of them? Do you just note them down in a diary or do you do something more visual/statistical? I'm sure there must be some Excel whizzes with symptom spreadsheets!
My doctor asked me for a bp & spasms spreadsheet - but I have a little notebook I keep for myself then I update the spreadsheet periodically if I change meds or have issues. I did the 100 days this year - 100daysofenglishrainbows... and have an exhibition at the South Downs youth hostel association with landscape paintings from the project ‘New Begginnings’ landscape stories of hope and renewal. Full exhibition is on my website. Sorry admins! We got into art not hearts!! But in my life the two are intertwined. ❤️
Same with me! Can you DM me the links so I can have a look at your work please? I'd love to see it!
Good to see heart failure doesn’t affect your eyesight! Cross stitch sends me cross eyed.
😂 I did a design on black fabric recently and that was tough on the eyes, for sure! I've had glasses since I was a teenager anyway so can't entirely blame the cross stitching!
Was going to ask(how the devil are you going to do that?)Now I know.Quite a project you`ve set yourself.x
In theory just a few seconds each day... 😬 Consistency will be key!
That's a very good point, Jo. I definitely feel the emotional/psychological side is more difficult in winter months and probably the breathlessness too. Also will be interesting to see the introduction of a new medication next month. I'm definitely going to aim for the full year - you've convinced me it will be worth it
this is beautiful! if you are comfortable discussing it may i ask how a diagnosis was reached? i have had it mentioned by two doctors as a possibility and i have pretty much all the symptoms but my ECGs have been okay and they don’t seem bothered about my echo. they’re back to trying to blame everything on anxiety.
all the best,
hannah x
No, I don't mind at all, Hannah. I was pregnant when I was diagnosed and the strain that put on my heart meant I was really unwell. My heartbeat was skipping all over the place and my heart definitely did not look normal on the echo - was very enlarged. It was pretty much as soon as they saw the echo that I was diagnosed and whisked into hospital. But heart failure comes in many degrees, of course, and maybe wouldn't always be so obvious at first glance? I don't know.
I should add that many of the "symptoms" I've used in my cross-stitch are really side effects of my medications and probably not indicative of heart failure on their own. Have you heard of the patient charity Pumping Marvellous? Their #BEATHF campaign says the symptoms to look out for are B- breathlessness, E - exhaustion and A - ankle swelling (although in some people that might be abdominal swelling instead) and that if you have these, you should ask your doctor to T - test your blood. I think it's called an NT-proBNP test? It checks for raised levels of a hormone that is produced when your heart is struggling, I think? So if that hasn't been done already, maybe you could ask for that specifically?
It's frustrating to hear of possible heart issues being written off as anxiety, especially in women. I believe it's a very common misdiagnosis, meaning women's treatment is delayed, often leading to poorer outcomes. So if you feel there's something more going on, keep fighting for a diagnosis, hard as that is. I hope you get some answers soon.
thank you so much!
i have had bloods done but none for BNP unfortunately. i was advised to have it done by paramedics and an a&e nurse but the doctor after refused.
pumping marvellous sounds useful and i shall give them a look so thank you for mentioning them.
my friend was told it was all anxiety and they now have an ICD and a cocktail of meds. i understand that it is so easy to attribute problems to anxiety and probably more so given covid. it’s extremely frustrating and gets me down sometimes. my family and friends are helping me to keep pushing for answers though. i am only 20 but we have had 3 family members with heart problems with 2 of them sadly passing at a young-ish age.
the irony is the frustration of being told it’s anxiety when i know it’s not is making me think i’ve lost the plot and i’m somehow making it all up. i’m determined to keep going until i have answers because
i cannot live like this. i want my life back x
I'm so sorry to hear all that. I would definitely recommend getting in touch with Pumping Marvellous, see if they have any advice. To me, it seems quite unreasonable that you would be refused a BNP blood test, but I'm not in any way an expert on medical rights, so who knows? (Hopefully someone involved with Pumping Marvellous!) Good luck and I really hope you get answers before too long. X
thank you for your help you have been wonderful x
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Surgery done, home safe
