Rough day :(

[soulsolaris]

This flare up is so bad. Im so weak i can barely hold my body up. The brain fog is so severe. And my body is just doing weird things which is making the anxiety run high. Im really really trying to keep the mindset that i am experiencing a flare up and to keep calm but its so hard and i wish people could feel what i ak for a few seconds to see how scary it is. Like i feel abnormally weak and exhausted. 😞 

[Doolhof]

Hi Soulsolaris,

Do you have any one there with you?

Can you call a family member or a friend to talk to right now or is that too difficult for you to do?

If you were really suffering extremely badly, would you call an ambulance if you did not feel safe?

I have not come across your threads before, so I am not sure how much you have shared about yourself and what you are suffering from right now.

Call out to someone. Do you use the phone help lines at all?

What has helped you in the past?

Hopefully you will soon get through this. Reach out for the help you need right now.

Yes, it would be beneficial if people could walk in our shoes for a while to know exactly what we are enduring. But that can not be. Hopefully you have the strength right now to endure this and see your way through it.

From Mrs. Dools

[soulsolaris]

And what's even harder is that i am physically to tired and weak to cook food and my mum usually does it because shes the only person i live with. But there are days where she gets angry and doesnt want to cook or is too tired too and i dont know what to do.. she gets angry and cries and it makes me feel bad because i cannot help how i am feeling but i dont know what to do in that situation. I feel like a burden and i feel anxious when she gets angry. Its moments like this where i feel like people woild be better off without me because i get why shes frustrated but at the same time im not sure what im supposed to do if i am physically too weak to hold myself up and cook food. :c

[soulsolaris]

I went to the hospital once feeling the exact same.. and they did all the standard emergency tests... concluded i am fine even though i could barely hold myself up and had numbness in my body.. told me its just anxiety and sent me on my way. Because what i am dealing with is autoimmune and this is a flare up.. they wont do anything. Even if i feel extremely messed up. 

My mum is here. I live with her. And all i can do right now is keep calm and try and distract myself. I normally dont feel to this extreme level of bad.. like i usually feel bad but not off the Scale bad. So i am definitely in a flare up. I am diagnosed with fibromyalgia and chronic fatigue syndrome.

[soulsolaris]

Oh and i dont really have any family members i can call and ive lost friends due to being unwell and housebound.

[Neil_1]

Hi there soulsolaris

As you know what you are dealing with and how bad it is, I’m guessing that your doctor would be well aware of your condition as well?   Do you think a possible appointment with your doc, could be a possibility?

It is pleasing to read that you know the things that you need to get happening to help you … by keeping calm and finding things to distract you.   I guess though when you’re feeling in this ultra bad place, it makes for those things to happen, just so much harder.

What are some of your usual methods for distraction or for keeping calm?

Do you have any favourite music you could listen too, or possible movies that you enjoy?

Do you enjoy cooking?

I won’t keep making suggestions, but I hope you get my gist for what I’m trying to provide help with.

I also wonder, do you find this site to be helpful?   I know I sure do, hence why I hang around here so much – and unloading on here can often be a little therapeutic in its own way and to do so in front of like-minded people, people who know and who understand.  People who won’t turn away from you – people who will support you no matter what.

Would love to hear back from you.

Neil

[soulsolaris]

Hi Neil, thanks for the suggestions. No.. doctors know barely a thing about my condition and going to them just brings so much frustration, stress and dissapointment. They are condescending and dont know how to help so ive been left with no treatment options or support from doctors. Which many people with illnesses like this or autoimmune disease seem to get similar treatment from their doctors. And as for keeping calm just read, listen to music, play games on my tablet or play with my cat. I dont have energy to cook at the moment. I said that in the comment above. And this place is okay. Im only new here.

[Doolhof]

Hi Soulsolaris,

You mentioned you have been diagnosed with fibromyalgia and Chronic Fatigue syndrome. I am wondering who diagnosed that and can you return to them for more assistance?

Can you call or check out a Chronic Fatigue support group and one for fibromyalgia? I am pretty sure they are out there somewhere.

If your current Dr does not know much about CFS then phone around until you find a medical centre close to you that does have a GP that understands CFS.

I certainly don't know what your finances are like, but is it possible to get meals delivered to the home. Friends of mine had "Lite and Easy" delivered to their place for a while during a rough patch. Or could you organise home delivery from the supermarket, they might have easy and quick meal suggestions that just need to be heated.

Years ago I suffered from both CFS and fibromyalgia. I found that reading up on these illnesses helped me to better understand them. It didn't always make it easier to live with, but understanding why my body was reacting the way it did was of some help.

It must be difficult for yourself and your Mum.

From Mrs. Dools

[Janksie]

Dear soulsolaris, 

 you are not alone, you always have beyond blue. I totally understand what you are going through. The only thing I would say is you need to take care of yourself at this moment so maybe find easier options for food, also try and rest as much as possible. In regard to doctor and remedies, from what I know about this autoimmune disease is that there are many other ways in which you may be able to feel better such as certain exercises, therapies, and positions. 

This is is just a suggestion but if you would like you could look into other options that could make things a little better.

i know this is hard for you and I can not measure what your pain must be like. If you ever need to talk. So one is always there for you

you are not a burden and you are not alone 

take care of yourself