I live with chronic illness AMA

[Mrsweasleysclock]

I have
Ehlers-danlos syndrome
POTS
Raynauds
FND
Vestibular migraines (under investigation)

[Mrsweasleysclock]

@Wizzbangfizz

What do you think of the"long covid disabled" posters

I think each to their own. I will never know what they are feeling or going through. Just the same as no one will know what I go through daily. Everyone's difficulties are real to them, it's not my job to judge or compare.

[Mrsweasleysclock]

@NatashaBedwouldbenice

God would only have given me these illnesses because he knows I can handle it.

Why do you imagine a god would inflict pain on you?

What’s the best ways that friends can support you?

Don't want to get too much into religion/philosophy but to briefly answer your question from my perspective:

Every one has their own tests and burdens that they go through. From my knowledge no one lives a perfect life. This is my burden, but it is not the central focus in my life. I have beautiful children, a fulfilling marriage and a caring extended family. I wouldn't give any of those up for my own better health. I don't think of it as God inflicting pain on me, I see it as Him giving me balance. It's through my illness that I've truly seen and appreciated everything else around me.

My friends support me best by not expecting too much from me. I am happy to catch up, talk on phone, face time etc. But I won't do long journeys or days out and things like that. I like to keep my good days for my kids and I think respecting that is all the support I need. Of course if there is an emergency I would push through for my friends but other than that we have a great understanding.

[Mrsweasleysclock]

@Hails68

I have FND and chronic migraine.Do you take any medication for it, and if so has it worked for you?

No medication for those two in particular as yet, but I do have an appointment to further investigate the migraines in March so I'm hopeful something will come out of that.

[Wizzbangfizz]

What do you think of the"long covid disabled" posters

[NatashaBedwouldbenice]

God would only have given me these illnesses because he knows I can handle it.

Why do you imagine a god would inflict pain on you?

What’s the best ways that friends can support you?

[Hails68]

I have FND and chronic migraine.Do you take any medication for it, and if so has it worked for you?

[Mrsweasleysclock]

@BonnesVacances

My question is have you ruled out MCAS? With EDS and POTS, MCAS is almost a certainty and could be the cause for your migraines.

I have no questions about life with chronic illness as my DD(now 19) has lived with it for 6 years and I know exactly how shit it is. And you have my solidarity and empathy OP. I've found Buddhism has helped me to come to terms with it all.

Haven't ruled out mcas. Makeup in particular makes me react, my eyes start streaming really badly. I get hives in summer and can no longer eat aubergine even though I love it!!

Sorry your DD is also going through it. Glad you've found something that helps you to deal with it.

[BonnesVacances]

My question is have you ruled out MCAS? With EDS and POTS, MCAS is almost a certainty and could be the cause for your migraines.

I have no questions about life with chronic illness as my DD(now 19) has lived with it for 6 years and I know exactly how shit it is. And you have my solidarity and empathy OP. I've found Buddhism has helped me to come to terms with it all.

[Mrsweasleysclock]

@Obsidiansphere

What are your symptoms of POTS and how did you get the diagnosis?

Symptoms are Dizziness, weakness, extreme fatigue, eyes blacking out, excess sweating, pre syncope. My blood pressure drops and my heart rate is fast, as if I was working out/running.

Diagnosis took a while, it wasn't until I made a double appointment with the GP and turned up with a full list of everything that is wrong with me that she immediately suspected EDS and POTS. She's a brilliant GP and she spent around an hour with me and referred me to a rheumatologist for my EDS diagnosis and a specialist private cardiologist for my POTS diagnosis.

[Mrsweasleysclock]

@Hails68

I have FND.Have you felt supported by the medical professionals that you have dealt with?

No I haven't felt supported at all. I was basically diagnosed and then told that it will go away on its own and then discharged. I was told to reduce my stress. Although I had no stress when it started, in fact I was actually in a goodish place before symptoms started so I'm not convinced it's stress related.

How has it been for you?

[Obsidiansphere]

What are your symptoms of POTS and how did you get the diagnosis?

[Hails68]

I have FND.Have you felt supported by the medical professionals that you have dealt with?

[Mrsweasleysclock]

@spiderlight

I have vestibular migraine too and it's bloody horrible! Have you found anything that helps?

I'm waiting for an appointment with a specialist I've been reffered to, hoping something can be done. It really is horrible and is just getting worse.

[spiderlight]

I have vestibular migraine too and it's bloody horrible! Have you found anything that helps?

[Mrsweasleysclock]

@mo do you also suffer from illnesses?

[MoMuntervary]

It sounds like you have lots of ways of making the most of your life in spite of your burdens. Chronic illness is pants. But often non-fixable and not within our control. I don't have faith but I'm glad it makes life more bearable for you.

[Mrsweasleysclock]

@MoMuntervary

Do you still live what you would determine as a 'good life". If so, what philosophy has helped you to achieve this?

Hello. I still live. I am currently in a particularly bad pain flare and have had to stop working for now. But I try my best to get on with day to day life. I have 2 young kids and a husband who is very supportive and they make me smile everyday.

In terms of philosophy, I'm religious and this gets me through, I have faith that although this is a part of my life its not my whole life. God would only have given me these illnesses because he knows I can handle it. He also gave me children to take care of, so in my mind there has to be a way to make it all work.

I also have a 'fake it till you make it' mentality. I'm very much a smile in public, cry in private type person, I've always been this way and I think it's this aspect of my personality which helps me deal with the day to day the most.

[MoMuntervary]

Do you still live what you would determine as a 'good life". If so, what philosophy has helped you to achieve this?