My brother has POTS dammit!

Silly Dr’s, along comes a rare illness and due to your sheer ignorance and incompetence you pass it off yet again as one of the more simple options. Yes, my brother is going through the battle of the Dr’s now. You’d think with me having POTS and EDS it would be more simple or him to get a diagnosis but oh no. They suggested he might have sleep apnoea! I took his pulse sitting and standing and it went over 120bpm, his pulse is also very erratic like mine, constantly fluctuating up and down even at rest. He gets severely out of breath, has adrenaline rushes that last for hours, can’t cope with any stress it makes him very ill like me and numerous other symptoms. He so obviously has EDS too and as it’s heredity the Dr’s should bloody well listen but nope. I only hope it doesn’t take him 25yrs+ to get a diagnosis as I did.

On a better and cheerier note, I’m doing ok this past week. Apart from worrying that my a/c might start pouring water again and we’re due for a sudden and mini heatwave this weekend/early next week plus I’m still waiting for the company I bought it from to ring me back to make a date to sort out the niggly problems with it. Despite that, I feel like I’m keeping up with everything.

A few days ago I managed to make numerous new outfits for my Second Life clothes shop, the first time in a month. I was so pleased I sold 10 of them in the first few hours of putting them out for sale. May it continue! It took me a day and a half to make, package them up, edit the vendor pics and advertise the new goodies. I was exhausted that evening but it was worth it. I love to be able to create and have others appreciate it by buying and wearing my clothes on their avatars. It’s such a good feeling.

I’ve also managed to do Pilates twice this week for 20mins a time. A perfect exercise for me as its all done mostly laying down (at least the beginners DVD I have does!) and I don’t suffer too much afterwards apart from aching muscles the next day but at least it’s showing it works! I’m starting to notice a slight toning up in various parts of my body which is great after being de-conditioned for many years and that doesn’t help the POTS. I find it also eases up my tight muscles which I get thanks to EDS. I’m also trying to diet a little and have lost 14 pounds in 6mths. I’d like to lose another 14 pounds at least. It’s taking me so long this time, it must be middle age creeping up on me!

I’m still revising for my psychology exam, fingers crossed it’ll all be done and dusted within the next week or two. I’ll be so glad to get it out the way and have a rest for a few months before the next one, catch up on my book reading, Second Life and all the video games I’ve got piling up and haven’t played yet!

I also gained a new nephew a week ago, he’s such a cutie and I had cuddles with him when he was just 3 days old. If you’re a follower of me on Twitter you may have seen the photo of him I posted on there a few days ago.

 

About Livinglifefromabed

I have numerous chronic illnesses, Postural Orthostatic Tachycardia Syndrome, Ehlers-Danlos Syndrome type 3, coeliac disease, raynaud's to name but a few! I have been mostly bedbound since 1996. This is my account of living a life from my bed. I'm proud of the things I have achieved despite the struggles I live with every day.
This entry was posted in Ehlers-Danlos, Everyday living, Exercise/Pacing, Nightmare Doctors, POTS, Psychology Courses, Weight and tagged , , , , , , , , , , , , , , , , , . Bookmark the permalink.

One Response to My brother has POTS dammit!

  1. Susannah says:

    Sorry to hear that your brother’s having so much trouble getting a sensible diagnosis. I really do NOT understand these people sometimes.

    That’s so awesome you gained a nephew though! :) Congratulations!!

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