Not being believed, to anyone with a chronic illness, it probably one of the worst, most traumatic things to have to deal with! makes me so angry. Sounds like you have been through an awful lot! It's really good to see you back Jenny, and I'm so glad you are on the mend (as much as you can be). Sending gentle hugs x
Sorry for not replying sooner - I’ve been struggling with my health. Yes I agree - it’s awful to not be believed. I think I’ve got a lot of trauma from that experience. Ah thank you so much. I really appreciate you still wanting to watch my videos xx
I’m sorry you’ve not been feeling well. And hope that you can get some help. Take care . And wishing you and your family best wishes. I’m so sorry youve been through so much bless you.
I had a lot of the hair falling out, awful nails, joint issues when I've been on high dose prednisolone/steroids for extended periods due to my asthma and crohns disease. It could be to do with those and the high doses of steroids in the inhalers - I recently saw an endocrinology nurse and she pointed out that my steroid intake includes the nasal sprays and inhalers, not just the tablets (which is obvious now, but it hadn't occurred to me before). Once I got off the steroids for a few months and got my vitamin d and b and iron/ferritin sorted, most of the symptoms settled down. Endocrine issues is definitely something I'd look into as they can cause some crazy random symptoms. Glad to see you're back, sounds likes you've really had a rough time after all that with your hips as well. Fingers crossed you start seeing improvements soon
That's really interesting to know - thank you for sharing that. I am on high dose inhaled steroids and have had a number of courses of oral steroids in the last couple of years, so perhaps that's related to my current issues. I'll definitely speak to my Doctor about Endocrine issues to see if that's something we can investigate. Sorry to hear steroids have caused you problems too. They can be a real wonder drug, but cause so many issues at the same time! Ah thank you, it's nice to be back and making videos again - thank you so much for watching :) xxx
The fatigue sound more like POTS. With me my blood pressure drops and causes horrendous fatigue. So have a look at POTS. Also fatigue is common with hEDS as a direct result of hypermobility in joints. Your muscles have to work harder to keep you upright! So hEDS itself causes fatigue! Mast cell activation syndrome can also causes low blood pressure, POTS, breathing difficulties, fatigue and soooooo much more! Look up MCAS too! Xxx
It’s great to see you back. I’m sorry you had such a rough year. I hope they are able to figure out what is going on with you and are able to help you get through it. I am glad you were sent to a specialist. It is amazing when a doctor knows what is wrong with you. I’ll be keeping you in my thoughts.
Thank you so much - it feels good to be back! Thank you - yes it’s such a relief when you find a doctor who just knows what the issue is! I hope you’re keeping well xx
I see that you finally got your mobility car which is great as i know there was issues with it, would be great to see a video on the car, like what you think of it, how you are managing it with the powerchair
Sorry for not replying sooner - I’ve been struggling with my health. Yes after lots of waiting I was finally able to get my car! Unfortunately I haven’t been well enough to drive it yet, which is frustrating. But my Dad drives me around in it and it’s nice having a bit more space for family members if we want to go out for the day. I’ll definitely add doing a video to my list - if I can get back to driving at some point hopefully I can give a bit more information on the hand controls xx
Have you thought about M.E/CFS(Chronic Fatigue syndrome.) I have that and my M.E cost me allot of pain, joint pain, brain fog, infections. Maybe you can look up the symtomes. It is great possible that you have that, because of your health problems.
Hi Jenny, thanks for the update. I’ve missed you. Now being able to breathe must’ve been so scary. x Just curious, how is your Gastroparesis? Mine seems to be getting worse. Take care. x P.S. I love your cardigan. Great colours.
Thank you Julie. I’ve missed making videos. Yeah it was definitely scary not being able to breathe. I’m thankful it’s improved a bit. My Gastroparesis has been up and down. Struggling a lot with pain at the moment and nausea/being sick hasn’t been great. Sorry to hear yours seems to be getting worse - I really feel for you, as I know how horrible it is. Do you have any medical support? Are you on any treatment at all? I hope things stabilise a bit for you soon xxx
@@JennyCole1988 Thank you for your reply. I’m just mainly on different tablets for nausea & acid reflux. I need to get in touch with my Dr again & be referred to someone at my local hospital. I keep putting it off tho, mainly in case I need an endoscopy, which I’ve had several times. My GP has definitely got a lot worse lately tho. Thinking of you. x
Not being believed, to anyone with a chronic illness, it probably one of the worst, most traumatic things to have to deal with! makes me so angry. Sounds like you have been through an awful lot! It's really good to see you back Jenny, and I'm so glad you are on the mend (as much as you can be). Sending gentle hugs x
Sorry for not replying sooner - I’ve been struggling with my health. Yes I agree - it’s awful to not be believed. I think I’ve got a lot of trauma from that experience. Ah thank you so much. I really appreciate you still wanting to watch my videos xx
I’m sorry you’ve not been feeling well. And hope that you can get some help. Take care . And wishing you and your family best wishes. I’m so sorry youve been through so much bless you.
Thank you - I really appreciate your support and well wishes. And thank you so much for watching too! Hope you're doing as well as possible xxx
Omg iv not even watched your vlog but I'm sitting with a big smile willing you on! You got this 👍 💪 xxx
Ah thank you so much! xxx
Welcome back Jenny!🎉
Thank you! xx
I had a lot of the hair falling out, awful nails, joint issues when I've been on high dose prednisolone/steroids for extended periods due to my asthma and crohns disease. It could be to do with those and the high doses of steroids in the inhalers - I recently saw an endocrinology nurse and she pointed out that my steroid intake includes the nasal sprays and inhalers, not just the tablets (which is obvious now, but it hadn't occurred to me before). Once I got off the steroids for a few months and got my vitamin d and b and iron/ferritin sorted, most of the symptoms settled down. Endocrine issues is definitely something I'd look into as they can cause some crazy random symptoms. Glad to see you're back, sounds likes you've really had a rough time after all that with your hips as well. Fingers crossed you start seeing improvements soon
That's really interesting to know - thank you for sharing that. I am on high dose inhaled steroids and have had a number of courses of oral steroids in the last couple of years, so perhaps that's related to my current issues. I'll definitely speak to my Doctor about Endocrine issues to see if that's something we can investigate. Sorry to hear steroids have caused you problems too. They can be a real wonder drug, but cause so many issues at the same time! Ah thank you, it's nice to be back and making videos again - thank you so much for watching :) xxx
The fatigue sound more like POTS. With me my blood pressure drops and causes horrendous fatigue. So have a look at POTS. Also fatigue is common with hEDS as a direct result of hypermobility in joints. Your muscles have to work harder to keep you upright! So hEDS itself causes fatigue! Mast cell activation syndrome can also causes low blood pressure, POTS, breathing difficulties, fatigue and soooooo much more! Look up MCAS too! Xxx
Welcome back. Sorry to hear your health hasn't been the greatest. ❤️
Thank you xxx
It’s so nice to see you back cariad xxxxxx
Thank you Penny - it’s good to be back 😊 xx
Welcome back ❤
Sorry for not replying sooner - I’ve been struggling with my health. Thank you so much - thank you for still wanting to watch my videos! xx
So glad you are back!!! ❤️❤️❤️ (Now I’m gonna watch the video 😉)
Ah thank you so much xxx
Happy to see your face again, hang in there, sounds like a rough couple years
Thank you so much xxx
It’s great to see you back. I’m sorry you had such a rough year. I hope they are able to figure out what is going on with you and are able to help you get through it. I am glad you were sent to a specialist. It is amazing when a doctor knows what is wrong with you. I’ll be keeping you in my thoughts.
Thank you so much - it feels good to be back! Thank you - yes it’s such a relief when you find a doctor who just knows what the issue is! I hope you’re keeping well xx
So glad you are back 💕 So sorry to hear about your health, I hope things manage to improve for you 🤞🏻
Thank you - it’s good to be back 😊 Thank you lovely xxx
I see that you finally got your mobility car which is great as i know there was issues with it, would be great to see a video on the car, like what you think of it, how you are managing it with the powerchair
Sorry for not replying sooner - I’ve been struggling with my health. Yes after lots of waiting I was finally able to get my car! Unfortunately I haven’t been well enough to drive it yet, which is frustrating. But my Dad drives me around in it and it’s nice having a bit more space for family members if we want to go out for the day. I’ll definitely add doing a video to my list - if I can get back to driving at some point hopefully I can give a bit more information on the hand controls xx
Have you thought about M.E/CFS(Chronic Fatigue syndrome.) I have that and my M.E cost me allot of pain, joint pain, brain fog, infections. Maybe you can look up the symtomes. It is great possible that you have that, because of your health problems.
Ciao Jenny from Italy🇮🇹Keep in touch!🌻🌼🌷🌺🥀
Hi Jenny, thanks for the update. I’ve missed you.
Now being able to breathe must’ve been so scary. x
Just curious, how is your Gastroparesis? Mine seems to be getting worse.
Take care. x
P.S. I love your cardigan. Great colours.
Thank you Julie. I’ve missed making videos. Yeah it was definitely scary not being able to breathe. I’m thankful it’s improved a bit. My Gastroparesis has been up and down. Struggling a lot with pain at the moment and nausea/being sick hasn’t been great. Sorry to hear yours seems to be getting worse - I really feel for you, as I know how horrible it is. Do you have any medical support? Are you on any treatment at all? I hope things stabilise a bit for you soon xxx
@@JennyCole1988 Thank you for your reply. I’m just mainly on different tablets for nausea & acid reflux. I need to get in touch with my Dr again & be referred to someone at my local hospital. I keep putting it off tho, mainly in case I need an endoscopy, which I’ve had several times. My GP has definitely got a lot worse lately tho. Thinking of you. x
@@JennyCole1988 Sorry, forgot to say thank you. x
I hope you are feeling better Jenny...perhaps alternative therapies could help or seeing a Naturopath....