Arrhythmia

I often think about the things doctors say to us, and how different their response would be if they could see our ailments. The caption to this self portrait of Van Gogh, is something a doctor said to me when I was so unwell from medication induced hyperthyroidism that it caused me to develop a near fatal cardiac condition. I was so nauseous, losing weight and struggling to keep any food down, that I begged him to help me even after he gave me this dressing down.

I can’t help but wonder what the doctor would have said if I’d walked into my appointment, with clear indicators of being physically unwell. And I don’t mean things like needing a walking stick or a wheelchair, because those were later used against me as “evidence” to prove that I was using my symptoms to get attention.

Van Gogh cutting parts of his ear off… might raise some mental illness questions to this day. But I think it’s unlikely that any doctor would ignore the state of his ear, tell he’d brought it upon himself, and that he needed to go away and “live with the consequences” of his decision in quite the same way.

#ChronicIllness #Hyperthyroidism #HashimotosThyroiditis #MyCondition #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #EhlersDanlosSyndrome #Endometriosis #Arrhythmia #Dysautonomia #PeripheralNeuropathy #Migraine #PosturalOrthostaticTachycardiaSyndrome

To quote the band Banners, “Light will lead the way, will set you free.”

Today I just got a bit of light back in my life ✨

I met with my doctor and she has agreed to be primary care physician and to continue monitoring my condition. She was the same doctor who looked at my ECG that the practice manager I saw previously scoffed at, and said “you need to go to hospital—today”.

She won my heart just a little more when I told her the hospital was struggling to get me booked in for a CT scan so one of the doctors started suggesting my problems might be mental… she gave the biggest eye roll, they almost did a 360.

So, Doctor Sarah, this light is for you from this grateful patient, whose shook faith in humanity you have helped to begin restore.

May there be many more like you—our community sorely needs it ❤️‍🩹

#Hope #WhereHopeGrows #HeartConditions #HeartCondition #Arrhythmia #PatientAndDoctorExperiences #MightyMoment #MyalgicEncephalomyelitis #ChronicFatigue

Day 5 of post surgery.

I want to try and discern ideas and tips share them with you. I can’t focus solely on being detached from the recovery journey but I don’t want to waste any opportunities to share.

I was warned that around day 5 that the “cardiac blues” would arrive. And they have. I am pretty teary today. I am in a lot of pain but fortunately the heart arrhythmia is starting to settle down. I was surprised to hear concern about my weight. I am 2 kilos heavier than pre-surgery. It certainly nothing to do with my eating as I am eating only 5 spoonfuls of food at meal time. It seems fluid retention is the issue.

What I have learnt on this journey so fa?

1. Ask for help. Doctors and nurses are great at knowing what the typical symptoms and recovery is but if we don’t speak up they are somewhat flying bad.

2. Ask questions. I have been scheduled so many new and additional drugs. Knowing what I am taking and why I need it helps me understand the process much more.

3. Don’t judge the journey on an hourly basis. The change and healing can be subtle but when you compare the days you realise that progress is happening, just not as quick or seamless as I would like.

4. Don’t discount the link between our psychology and physiology. The two are so intertwined. Both need to be cared for and demand equal attention.

I am holding my heart pillow. The pillow is essential for holding against your chest when standing up or sitting down. I have been getting the nurses, doctors, porters and cleaners to sign their names. I want to have a permanent record of the names of these people who have cared for me and ensured the surgery succeeds.

The encouragement and support from the Mighty has been incredibly comforting and appreciated.