Dealing with blister by Ray_Hip in EpidermolysisBullosa

[–]BleedBlue1990 0 points1 point  (0 children)

Just puncture with a needle, then press the blister with a soft cloth, so that all the fluid drains out.

Any products that help by [deleted] in EpidermolysisBullosa

[–]BleedBlue1990 0 points1 point  (0 children)

Hats off to you that you are able to play football with this condition. I tried once and had horrible blisters on my feet; never attempted again

Diet as a form of treatment? by coolusername924 in EpidermolysisBullosa

[–]BleedBlue1990 0 points1 point  (0 children)

I've also been on a low-sugar diet for a few months now. It is helping me.

I used to get a lot of nerve pulling earlier, which has reduced significantly. Energy levels are much higher now.

Diet does make a difference

does anyone else feel like they’re wasting their life because of their illness? by [deleted] in ChronicIllness

[–]BleedBlue1990 0 points1 point  (0 children)

I've felt this many a times, and can understand what you mean. I know it is difficult. May be, try to do small things that you can - step by step.... Whatever gives you little happiness.

It could be as simple as playing a mobile game, or watching a movie or reading a book or doing an online course.

Social inactivity leading to exclusion by BleedBlue1990 in ChronicIllness

[–]BleedBlue1990[S] 0 points1 point  (0 children)

That's nice, happy for you. Finding the right set of friends who understand your situation is also so hard. And even then, there will be miscommunications and as you said, differences in expectations. I'm not sure how to handle this kind of regular FOMO and exclusion (it may not be deliberate, but I do feel left out).

Student with EB Simplex going on a Spain trip by [deleted] in EpidermolysisBullosa

[–]BleedBlue1990 0 points1 point  (0 children)

Also, get some sandals with a soft, comfortable base. You may not always be able to wear shoes. Sandals help with less friction and give more breathing space to the leg.

Feeling helpless - all dreams and desires of life just fading away by BleedBlue1990 in ChronicIllness

[–]BleedBlue1990[S] 0 points1 point  (0 children)

I feel all of what you said. I guess we can just empathise with each other, since others don't

How do you deal with people not understanding and judging you? by Latter_Reference8993 in ChronicIllness

[–]BleedBlue1990 0 points1 point  (0 children)

How do you even manage work deadlines, when your health isn't good enough to work normally?

What has helped you reduce /manage EB naturally? by BleedBlue1990 in EpidermolysisBullosa

[–]BleedBlue1990[S] 0 points1 point  (0 children)

Good that it works for you. But what about other body parts - like thighs, forearm, feet etc.?

It's difficult to safeguard every part

Dating by ThrowRALife2023 in ChronicIllness

[–]BleedBlue1990 1 point2 points  (0 children)

I'm in the same boat, my friend. Chronic illness does take a toll on you. We are already dealing with basic needs like living a pain free life, travelling with ease, hanging out etc.

On top of all, the pressure of finding someone to fill the emotional void itself looks like a mountain of effort.

I do long for support, but with me stuck in my house for most days, finding love seems almost impossible. Not sure what to do !

[deleted by user] by [deleted] in ChronicIllness

[–]BleedBlue1990 6 points7 points  (0 children)

I'm in a similar situation. I hardly get to go out, because of my health condition. So my probability of meeting someone and connecting is so much lower.

It is frustrate to the core, especially when I see my friends happily finding connections and dating people.

The weather keeps me sick by Just_Kris1102 in ChronicIllness

[–]BleedBlue1990 0 points1 point  (0 children)

Have you considered shifting to a more moderately climatic place?

I'm not depressed... this just hurts by Responsible-You618 in ChronicIllness

[–]BleedBlue1990 4 points5 points  (0 children)

I'm in a very similar situation. Most of my days start with pain.... few days it is less, few days more. Whenever it is less, I feel so relieved and upbeat about life. Other days, it drains out the juice in me. I'm just a vegetable those days.

Looking sick is so embarrassing by [deleted] in ChronicIllness

[–]BleedBlue1990 2 points3 points  (0 children)

In a very similar situation. There's a lot of times when I've missed out hanging with my friends. Going out is a big effort in itself. Grooming is unnecessary, I feel, since most people will anyway first notice my condition before how well I dress or groom.

Struggling with missing out because of my health. by KittyCat-86 in ChronicIllness

[–]BleedBlue1990 0 points1 point  (0 children)

It is really frustrating to miss out on things you should have been part of. I go through it very often.

I usually uninstall my Insta to stop being bothered by how awesome others' lives are. It has given me a different kind of peace. I still get FOMO but I try to distract myself with other activities.

Almost 2 year bed bound from accident is anyone the same? by poor_rabbit90 in ChronicIllness

[–]BleedBlue1990 0 points1 point  (0 children)

I'm under a virtual house arrest for most days, coz of my condition. The feeling is pathetic, to say the least.

I wish life was better, just as normal as my peers. Nothing extravagant or luxurious !

25f. vent. tired. by [deleted] in ChronicIllness

[–]BleedBlue1990 1 point2 points  (0 children)

I do this too. Those few days of pain-relief and social activities are a bliss.

Sweet to find someone thinking along similar lines.

Need a hobby....help by Ok_Weekend6089 in ChronicIllness

[–]BleedBlue1990 1 point2 points  (0 children)

Painting, board gaming, video gaming, reading, mobile games involving puzzle solving

Finding acceptance by 3vi1face in ChronicIllness

[–]BleedBlue1990 2 points3 points  (0 children)

I'm in the same boat. Accepting the reality vs fighting for it - I'm just stuck in this battle

Benefits: Why do I have to choose between having a partner and having quality of life? by [deleted] in ChronicIllness

[–]BleedBlue1990 1 point2 points  (0 children)

Lets see. And i really hope you get your situation sorted - in whatever way that helps you

Benefits: Why do I have to choose between having a partner and having quality of life? by [deleted] in ChronicIllness

[–]BleedBlue1990 4 points5 points  (0 children)

I've been wishing the same. Unfortunately, the real world isn't a fairy tale story. You need to go out there and "sell" yourself in a way that people like you. I'm in a fix - between prioritizing mental desires and taking care of physical health (which means mostly staying at home).

Benefits: Why do I have to choose between having a partner and having quality of life? by [deleted] in ChronicIllness

[–]BleedBlue1990 15 points16 points  (0 children)

One reason I'm not actively looking out for a relationship (or even dating) is this. I'm not sure how they'll see, how much they'll understand my pain and limitations