The Chronically ill Pixie

25/10/2024

25/10/2024

Happy national PotS day 🥰 this is a great video explaining PoTs

https://youtu.be/XoKmJA-onqg?si=sUHi6WvAb7V8l3fx

24/10/2024

Basically 🤣

22/10/2024

Tuesdays are the hardest days! I have to do the school runs, tea bath and bed routine and also 2 and a half hour theory lesson run by my local council! Ive managed to do 4 weeks so I've only got two more to do! But those 2 and a half hours less of resting and pacing messes me up big time! By the end of Tuesday I'm exhausted 😩 I usually have a headache, the shakes and chronic nausea! But im reminding myself that once I'm deemed capable to drive by the DVLA and I get my car - the school runs and life in general - will be SO MUCH EASIER!

4 years ago when I was diagnosed I honestly thought this wouldn't be possible so I have to remeber that to!

19/10/2024

I asked Chatgp was Pots was and the symptoms of having PoTs! Here's what it said

Common symptoms of Postural Orthostatic Tachycardia Syndrome (PoTS) include:

1. **Increased Heart Rate**: A significant increase in heart rate (usually more than 30 beats per minute) when transitioning from lying down to standing up.

2. **Dizziness or Lightheadedness**: Many patients experience dizziness or a feeling of faintness, especially upon standing.

3. **Fatigue**: Chronic fatigue is a prevalent symptom, often debilitating.

4. **Palpitations**: A sensation of a racing or pounding heart.

5. **Sweating Abnormalities**: Either excessive sweating or reduced sweating.

6. **Nausea**: Some individuals may experience gastrointestinal issues, including nausea.

7. **Shakiness**: Feelings of shakiness or tremors, particularly when standing.

8. **Blurred Vision**: Visual disturbances may occur, especially when changing positions.

9. **Temperature Regulation Issues**: Difficulty regulating body temperature, leading to feeling too hot or too cold.

10. **Cognitive Impairment**: Often referred to as "brain fog," this can include difficulties with concentration and memory.

Symptoms can vary widely among individuals and may worsen with prolonged standing or physical exertion. If you suspect you have PoTS or are experiencing these symptoms, it's important to consult a healthcare professional for proper diagnosis and management.

Pretty spot on I'd say!

18/10/2024

The October slide is something I really struggle with and every year I forget about it so its an absolute shock when it happens!

The slide is when we have a massive flare up of symptoms due to temperature change. So for me I'm usually exetremely tired, I ache everywhere alot more. My knees feel like lead and generally moving my joints is a lot more effort 🤣🤣

But then October is my favourite time of the year! Coffee, pumpkins, autumn leaves, cold clear autumn mornings! I especially love making crotchet pumpkins 🎃

It's a love hate relationship!

16/10/2024

The PoTs life!!

14/10/2024

Dark humour is the only way 🤣

13/10/2024

Pots happens to be when s**t hits the fan
Because we fell to the floor trying to get out the door
Pots can be racing even though we be pacing
We quite like our pickles but don't like being in a pickle
Give us a salty snack and forever we'll have your back

12/10/2024

Went to the docs this week as I have a nasty virus! And had to explain to her that I cannot have an inhaler with a medication I'm on as its contradicts itself

When you live with an under searched and under funded illness you have to fight and know more. Despite alot of people living with Pots / fibromylagia and cfs/me these are three of the most underfunded illness within the NHS! So don't let you knowledge be unheard - we know more than the average GP!

24/02/2024

When you live with a chronic illness you learn that each one has a comorbidity. Mine are chronic fatigue and MCAS. MCAS is when your body cannot tolerate foods high in histamine. Mine comes out in severe rashes and feeling itchy. You can see where ive itched and then scratched my skin causong tiny cuta to my skin 😔. The foods I've eaten over the last few days that are high in histamine are

Spinach
Nuts
Dried fruit
Cured meat.

I'm.still learning about MCAS. But after today I definitely know NOT to eat so much of these foods again.

Its worth research the co morbidities of any chronic illness you have!

25/01/2024

Chronic illness will not break me

25/01/2024

We got this 💪

24/01/2024

Apologies for the lack of posts guys. November , December and most of January has been challenging. Some good some bad.

Christmas was lovely but took a lot out if me.

December and January as been filled with back to back viruses and infection for both myself and my daughter. So I've had to put everything to one side and literally live each moment of each day.

But hopefully I'll be back now.

Something I do that I never mention is that I am admin for a PoTs chat group where we welcome anyone with PoTs to come and chat, speak in a safe place and share experiences! So if you're a fellow Potsie like me - join me!!

https://m.me/ch/AbZNKiS3EccD-xeM/