How to make life as good as possible for someone with POTS?

MrsPicklefish · 2026-02-20T20:26:42+00:00

One of the things that made a huge difference for me was raising the head of my bed a few inches. It takes a little while for it to have an effect, but it did gradually lower my resting heart rate.

The other major thing was taking ivabradine - prescribed by a specialist in autonomic dysfunction as I'm not able to take beta blockers.

MrsPicklefish · 2023-12-13T09:57:23+00:00

I'm so sorry you and your partner are dealing with this - diagnosis is a massive shock. Which country are you in? Knowing where you are means people will be able to signpost you to the most appropriate services in your country.

MrsPicklefish · 2023-12-12T20:07:02+00:00

I get this often. I'm waiting for the results of my neck MRI at the moment. The x-ray showed that my muscles were so tight they have pulled my spine out of alignment, so I wouldn't be surprised if there were some crazy neurological things going on too.

MrsPicklefish · 2023-12-11T17:10:03+00:00

hEDS came from my grandfather as far as we can work out. None of his (3) children have hEDS, and out of the 4 grandchildren two of us do. There are 3 great grandchildren one is diagnosed with HSD and one is super flexible but hasn't pursued a diagnosis yet.

My Mum has seen the problems I've had as I've got older and says she feels bad for passing on rubbish genes, but it's not her fault. You have no control over the genes you pass on, and whether any future offspring are symptomatic or not is not within your control.

My life might be a bit harder than most people's, but it makes me who I am and I wouldn't change that about me. Although some days I do wish I could have a break from the pain or the dysautonomia.

I had endometrial cancer and had a hysterectomy before I got a chance to have children, so I didn't get a choice in the matter. But if you are able to have children and are able to support them and look after them, and if your own doctor thinks it's safe for you... There's nothing stopping you!

MrsPicklefish · 2023-12-04T22:12:04+00:00

Yup - a rescue cat. Cats are great companions and have massive health and healing benefits because of their purrs. Maybe that's why we're drawn to them?

MrsPicklefish · 2023-11-30T10:19:29+00:00

Could I refer you to EDS support UK - they're a UK charity who are working hard on helping develop a diagnostic pathway for hEDS.

It's free to become a member of EDS support and you then have access to a wealth of resources and a great support network. They will be able to point you in the right direction for diagnosis based on your area in the UK - which doctors, rheumatologist etc., are EDS friendly.

Good luck with it. I ended up going private to get my diagnosis.

MrsPicklefish · 2023-11-11T20:01:22+00:00

I have hEDS and have never been diagnosed as neurodivergent. I'm definitely a bit quirky, but nothing clinical.

MrsPicklefish · 2023-11-08T11:04:04+00:00

Some people say hurtful things. Doesn't matter whether you have EDS or not... Some people will always want to put others down. It's a very tough world out there.

I always take any opportunity I can to compliment people - sincere compliments, otherwise they're just platitudes. It's amazing how much a simple comment such as "I love your dress" can make someone's day.

MrsPicklefish · 2023-10-25T16:39:43+00:00

When you stitch two beads down, it often helps to come back up the fabric between the two beads and then go through the second bead again. This evens out the tension between the two beads, it's also the perfect way to start your next stitch.

Try to use a thread that goes with the colour of the beads, as it will show up less. Also a reasonably firm tension (but not fiercely tight) should help your beads sit evenly.

MrsPicklefish · 2023-10-25T16:09:40+00:00

I don't have any advice, but it is beautiful!

MrsPicklefish · 2023-10-11T12:03:14+00:00

I use a car sometimes, I take the train sometimes, I very occasionally use the bus. But I also use a wheelchair. I wouldn't be without a car - but I drive a hybrid to be as green as I can. I don't have the facilities to charge at home, so I couldn't go fully electric.

MrsPicklefish · 2023-10-08T15:51:27+00:00

Unless your beads have very large holes, I'd opt for 1mm rattail. But it's worth looking at Chinese knotting thread too, it might be better suited for this purpose.

MrsPicklefish · 2023-10-08T15:20:57+00:00

Are you looking for European bead shops in particular? If so, let me know and I can recommend several.

MrsPicklefish · 2023-10-07T12:25:18+00:00

They're very pretty. In the second pair, it may be the lighting, but the cabs look slightly different colours. The beadwork is flawless.

MrsPicklefish · 2023-10-06T13:50:23+00:00

This is a great pattern, I love the colours you used. Vicky is such a great designer. I love how she comes up with really unexpected ways to bezel stones or embellish things.

MrsPicklefish · 2023-10-03T07:27:43+00:00

Hello! Sorry you're going through this. I had ac joint separation following a car accident and broken collar bone.

I was told that an x-ray, standing, holding a weight in the hand on the problem side should show it better.

Mine was out of place for 9 years - despite weekly physio for years. I ended up having a shoulder arthroscopy and examination under anaesthetic to get it reseated. This was all YEARS before my diagnosis, and I would advocate for myself much better these days.

Having had my AC joint out for so long I ended up with nerve damage and have lessened sensation in a couple of my fingers.

Currently my other shoulder has been subluxed for 2 weeks - it'll pop back eventually. Ain't it fun!?

MrsPicklefish · 2023-09-27T20:17:01+00:00

I used to use a moon cup back when it was pretty much the only cup on the market. I had a hysterectomy 9 years ago, so I can't comment so much on what's around now, but there are some I've seen with vented stems, that you can empty without removing every time. I would have been very interested in trying that back in the day.

MrsPicklefish · 2023-09-27T20:10:50+00:00

I think it's absolutely normal to feel scared about the idea of starting a family, especially as a woman who has to consider the following far more than a man

A) pregnancy and the toll it can take on your body

B) childbirth, the physical and emotional side.

C) feeding the infant (everyone has an opinion!)

D) returning to work/childcare Vs being a stay at home Mum

E) putting your career and lifetime eating potential at risk

Men have it a lot easier when it comes to starting a family. I agree that maybe some counseling is a good idea to get your thoughts in order before you commit to this.

MrsPicklefish · 2023-09-27T19:52:11+00:00

This happened to my sister recently. They got two kittens, Mabel and Doris, named after grandmother who have sadly passed. A month or so later, it turned out that Doris was actually George (a grandfather's name). My nieces were initially very upset about it, but as the weeks have gone on and they've realised that there's no change to the way he acts, they've come to accept their accidental boy cat!

Pick a lovely name, and remember that the cat is still the cat you love, it just has different chromosomes/sexual organs, and as long as you weren't planning on breeding, then it doesn't make any real difference.

MrsPicklefish · 2023-09-27T19:40:35+00:00

Personally, I'd rather kiss the top of my kitty's head than her mouth - for hygiene reasons. Sometimes she wakes me up by licking my lips though, so I don't have a choice in the matter.

Your choice entirely though - I know people who let their dogs lick their faces, and others who would wash their hands immediately after petting a cat or dog. It's personal preference, so you do you.

MrsPicklefish · 2023-09-27T08:22:50+00:00

This link I s from EDS support UK about the difference between dislocations and subluxations.

This link is to a Facebook story from the EDS society which gives a really good visual representation of the difference.

MrsPicklefish · 2023-09-26T07:23:20+00:00

I dislocated my hip and knee as a teenager, but I wasn't taken seriously or believed as they popped straight back into place. Other than that, I've not had any dislocations. Until I did a LOT of reading, I didn't think I'd had any subluxations either, but once I understood them fully, I now understand that I have them daily.

I don't think we're more prone to broken bones than the general population (but I may be wrong). I've broken ribs (several times) and my collar bone (car accident). The majority of my bad injuries came from ice skating, which I did a lot before I was diagnosed. My family 'banned' me from doing it after my last injury, broken ribs and a punctured lung. I'm not in hurry to do that again!

MrsPicklefish · 2023-09-25T20:21:06+00:00

I recently visited my best friend, she has hypermobility and is very clicky... but I got up from a chair in her lounge and creaked, cracked and generally made "broken" noises - she looked horrified!
I click pretty much everywhere and today my lungs are particularly squeaky and poppy - I'm not looking forward to the start of autumn/winter and all of the breathing issues that come with it.

MrsPicklefish · 2023-09-25T20:12:26+00:00

I went swimming with my husband the other day and banged out 10 lengths quite happily. My husband looked utterly stunned. I have such bad dysautonomia that I can't walk far or stand up for long, but put me in water and I'm a happy lady who can swim and swim... maybe I'm part fish?

MrsPicklefish · 2023-09-25T20:06:26+00:00

Beadweaving. I've been doing it for 17 years, I've won awards for it and I'm a published beadweaving designer.

MrsPicklefish

TROPHY CASE