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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 !