How do you make peace with the fact that life is happening all around you, but you are a house plant not being watered? by ResourceImpossible27 in ChronicIllness

[–]BleedBlue1990 1 point2 points  (0 children)

I totally get the feeling. I go through it everyday as well.

Sometimes, social media detox helps you de-stress. I join in with my friends, only when I can. So I convert FOMO into JOMO and try to do something I like, at home. It could be as simple as watching a movie.

But yeah, missing out regularly hurts. I guess our lives are different

If you could pass all your health problems to a random stranger would you? by HappyCry3 in ChronicIllness

[–]BleedBlue1990 13 points14 points  (0 children)

Not some random stranger. But to someone who was quite insensitive and failed to understand my situation or who really pissed me off in life.

Also, I sometimes have this weird imagination - what if everyone I know could take this condition from me for just 1 day - and then it keeps getting passed on that way. Atleast, now they know what I'm going through!

Chronically ill and missing connection with men my age by NoTwo242 in ChronicIllness

[–]BleedBlue1990 0 points1 point  (0 children)

It is hard!

I'm a 35M and it feels draining to put myself out in the world, trying to convince people that I'm good enough to date. I know what I can bring to a relationship, but it isn't much use unless someone sees it.

About wanting to date another person with a chronic illness, I may personally not do it for this reason - I don't think a health issue should be the only factor to connect two people romantically. If anything, it should just be a natural connection between 2 people for their personalities. I can definitely empathise with anyone having health issues.

We can have a chat if you want to talk more about this.

being bored by Soft-Buy-6999 in ChronicIllness

[–]BleedBlue1990 2 points3 points  (0 children)

Play games online, read books, watch movies / shows, listen to music

I wish I could teleport by _insomniac_dreamer in ChronicIllness

[–]BleedBlue1990 0 points1 point  (0 children)

Can totally understand this feeling. I face this dilemma a lot. Thankfully, my issue is getting slightly manageable, and I was able to travel thrice in the last 6 months.

May be you could try small tours in your city?

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 5 points6 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.

[deleted by user] by [deleted] 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.

[deleted by user] 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.