OK. So I've touched on this subject loads in the past but a series of events have occurred recently that made me feel the need to write another post.
I feel so incredibly lonely. Going through steroid withdrawal, and even before that when I had 'severe eczema', I just lost my social life. I've slipped further and further inside of a shell and I'm struggling to come out of it. When I do go to events I feel as though I'm letting my friends down because I'm just not having as much fun as I should be. I'm just not living and feel constantly worried about how things will effect me.
Drinking. My friends love to go out for a drink. Which is all fair and well but I have to think about how it would most likely cause my herpeticum to flare as it has in the past, not to mention the dehydration aspect of it makes my skin dry out. I just feel as though I'm boring and it's not because I can't drink I don't particularly want to drink. It's the socialising bit that surrounds it. I just struggle to be myself.
It's reached the point where I even struggle to talk to people online. Online. For Gods' sake. All it requires is typing. But I just feel scared and weird.
It doesn't help that because I'm not talking, no one else is talking to me either. I guess they must think I'm ignoring them or I'm doing fine but I'm not. I'm really, truly not.
I have a feeling this post will just consist of word vomit and I will type as my brain processes these thoughts but I need to get it out.
I just don't know what to do to help myself. I was always incredibly shy as a child, but when I became a teenager I started opening up a bit more, and in my college years I feel as though I was finally getting somewhere. I was so much more outgoing and up for a laugh. I think it's these times that I really miss. Just feeling carefree and happy. I seem to cling onto my past with so much love and nostalgia. But in the present all I feel is regret and loss of the life I once had. It's such a sad state of affairs. I was so independent but since being ill that part of me has disappeared and I lack so much confidence in myself as a person.
I desperately want to change but I feel stuck.
I'll probably end up deleting this post as it's so poorly constructed but I just needed to get it out there. I'm not OK.
Edit:
I think this is going to be something I keep adding to as I just went away and had more thoughts that I wanted to get down.
I feel like everyone is finally getting their lives together. Everyone is growing up and doing fun and exciting things... but me... I'm just left somewhere in the past hoping life can resume when I'm better. But will I ever be better? I used to have such a zest for living life. I still have so many goals and ambitions but I have no idea where to go from here. Everything revolves around my illness which is something I never wanted to admit but I'm a sensible person, and so of course it does. I feel trapped and as though I have regressed in life. I'm 26 and feel as though I've wasted so much time doing nothing.
I also feel as though no one cares any more. Oh it's just Jenny. She can never do anything so we'll just stop asking her. She's boring now so can't really be arsed. OK now I'm sounding butt hurt. But I did warn you this would be word vomit. I don't even know if that is even true but I can't help but overthink things.
I just don't know.
I've just become incredibly anxious and awkward.
Hi Jenny,
ReplyDeleteFirst of all.. Stop being so hard on yourself. You've been suffering from a horrendous illness caused by medication you were supposed to take to help a condition that's pretty serious in the first place! Just think how far you've come in the last couple of years. As someone whose read your blog for a while, I know you've gone from being unable to hold down a full time job because of your illness, to working full time!
Secondly, look how much better you are compared to three years ago!! I know your skin is not 100% at all, but it's a lot better. And you're soon reaching the three year mark :).
Finally, do you think you might be suffering from depression? It sounds like you might be having some kind of mild form, since you're saying you are feeling a bit directionless!
As you've spent the last few years recovering from a serious illness, you haven't had the chance to socialise as much as you'd like to, so it's understandable you're feeling a bit out of place at first in crowded places! Trust me, that part will get much, much easier the more you do it. Maybe try one on one stuff with friends, like meeting in a cafe, or going for a walk, and build from there. Don't yourself in at the deep end so soon.
Take care, and be kind to yourself :)
* throw yourself in at the deep end.
DeleteThanks Anon! That's such a sweet response <3 I know I've definitely come a hell of a long way in my journey and it will still take a while for my visible parts to go back to normal, as that is where the skin first went bad but some days I just dwell on my past too much. I'm glad I wrote this post because some people literally had no idea that I felt this way so that has helped to solidify things :) There is obviously more to my story but nothing I'd like to talk openly about and indeed I do believe depression is at the heart of it. Onwards and upwards :)
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Jenny, you truly are an amazing person and I know how this old TSW can sometimes do more emotional damage than physical. Reflect on the progress you have made and try and think of ways that you can meet your friends in the middle. Don't isolate yourself. Try and talk to a medical professional about your feelings and see what they suggest.
ReplyDeleteDon't delete the post. I think a lot of people will relate to your feelings.
Hugs,
Lou x
You are welcome Jenny :). Have some of your friends read this? Has it helped in that way? How is your skin at the moment?
ReplyDeleteIt's not an easy road but you've done over 32 months, that's amazing!! Your blog is very inspiring and I hope you give yourself credit for all the things you have done to get to this point. It is progress. You have resilience, fight in you and strength that many people don't even need to get through their lives because they will never be affected by something which physically and notionally drains the life out of you. Yes it's not fair, heck it's pretty god damn awful what it can do to us but never ever lose sight of what you have achieved because it's immense! It is difficult looking on and seeing how little other people need to worry about their skin, their health...I have sisters and sometimes even now when my eczema is calm I just feel utterly vile next to them with my scars and eczema patches. Or when people moan about a spot when you're sitting there with eczema covering your face. It just feels as though eczema isn't seen its dismissed and it's not seen as something which is psychologically difficult. But I take times like those now to appreciate how much my eczema has made me grow as a person.
ReplyDeleteOn my blog I did a post a while back entitled "eczema: letters to my frenemy" and ahhh if you ever need to vent please please try this! It's called therapeutic writing. I did the letter to eczema as an enemy first and then one to eczema my friend and just vented my thoughts, strangely I was quite thankful of eczema ( nope never thought I'd say that either!). It's shaped me as a person, I've just opened my eyes to real problems and it's driven me to my career as a psychologist so I just see it as something which has built strength and character, heck it's taken me to low, low places don't get me wrong but I guess I tried to find the silver lining and it helped, perhaps give it a go? It would be good to see your letters If you want to share :)
It can feel like a lonely journey but look at your following, you're never alone. You have to figure out what it is you want from life and start making those steps. What are your goals and what can you do right now to make A small step towards them? Weirdly enough I'm a solution Focused hypnotherapist and so goal setting is my thing, if you ever want a hand just email me and we can Skype :) (for free of course!!) Selina @ myeczematales.com I also have a YouTube Chanel of sleep and relaxation audios if skin is keeping you up at night maybe give it a try? Helps me to sleep through.
You may feel as though you've become this "boring" person to others but maybe they just need to hear how you're doing and feeling? They probably don't realise the impact your ski is having on you, I still find t surprising that I had a full face and neck of weeping eczema at uni and not one person mentioned it. It's like completely ignored! So if you feel that way then maybe it's time to talk about it.
Good luck and keep smiling!! Life is just beginning, yes we may never have a cure but you're striving towards manageable and that's worth it!! Im
I feel so so sorry for you. You are amazing and your notes are giving me so much. I don't feel like I'm the only oe with eczema. I'm avoiding ppl too,but not only because of eczema, I just really enjoy being lonely. But in work in school I must deal with them and with my skin. It's hard, I know. But they're some ppl who accepted me and my skin and they're always trying to have food for me and do things that I also can. Just don't go back to your shell and try to find those ppl. It took me so many years but now I'm ok. And don't think about yourself by eczema on first place. You are you, not your eczema. Take care and lots of love! Thank you for this amazing blog!
ReplyDeleteHi Jenny. I am 26 like you. I started getting bad acne after I turned 23, it turned so nasty that I had to travel back home because I eventually I couldn't handle the depression it carried with it myself. My whole skin was filled it was incredibly depressing and painful. I was out traveling the world and I had to go home but my parents did not want to help me. Eventually my aunt took me in because I became pretty suicidal (this depression started before acne though). I had to live with them for 1.5 yrs where I had nothing. I was on a waiting list for a doctor and a psychologist that wound up never helping me. Eventually they put me on Accutane but failed to ask me what my skin was like. I have always had problems with eczema since a kid so I had dry acne skin (they best kind eh? hah). I went on it. Now my skin no longer produce any oils. Like at all. I got a bunch of scars on top of it. As I am sitting here I have patches of eczema on my legs, arms, hands, my whole neck, half my cheeks (although it doesn't show that much), small patches on my forehead, and all around my eyes. I have to have incredible discipline not to itch and if I don't (nights are really bad though) it looks okay. But still I'm flaking everywhere. What I want to say is I understand you. With all my heart. It might not be the same but I understand the hopelessness of it. I had acne which scarred me as well - at least you do not have to go through that. I have to do actual surgery every three months where they do these horrific treatments on my face for minimal improvements. Those are incredibly painful too. But to be honest my life isn't that bad some days. I eventually decided to continue traveling. Sometimes it is hard because I have other health problems, stomach and endo, anxiety, depression etc. Sometimes I can't see out of my eyes because of the eczema. I just wake up look in the mirror and want to start crying. Instead, I usually skip class on those days make pancakes listen to funny podcasts and just try to take care of myself. We all have different fights and I know yours has been going on for some time now which is pretty unfair. I see a lot of people who pity me. Which I hate. I mean seriously? I'm here fighting something I can't control. Instead of pity me see the strength that I have. This is what I want to tell you. I see incredible strength in you. This is very rare. I see how you power through with a positive attitude and one day you will look back at this and see how this shaped the most awesome person ever. People will be drawn to you your whole life because they will admire this strength. You will come out of this. There is no doubt in my mind. I know when you're right in the middle of it you never see the exist sign. But it is there and you will get there maybe not in the way you expected but you will find peace and happiness. I believe this with all my heart. I know this will sound like some annoying person but I just want you to know that you are not alone. There are so many fighters out there, in so many different ways.
ReplyDeleteI do feel it for you Jenny! When my eczema flares up the last thing I want to do is go out with my friends drinking and make it worse. But, they are really understanding and we go out for food or I just don't drink while we're out. I'm lucky to have a good support system around me and I'm sorry that you feel you don't have that! Hopefully, things will look up for you soon xxx
ReplyDeleteHi, as someone who has suffered with very bad eczema, and been in and out of hospital, with red, yellow weepy skin, I have some advice. I stopped using steroid creams (as you have) and used nothing. No moisturisers, nothing. I also started eating cleanly (which I know you are doing), making green smoothies (in every smoothie I add turmeric and ginger (both are anti-inflammatory), pumpkin seeds, sunflower seeds and fennell), cutting out red meat and eating fruit, nuts and vegetables.
ReplyDeleteYou should be careful of eating too much fruit as sugar in the blood can irritate the skin, it can also feed the bad bacteria. I have had success in eating (gluten free) oats every day for breakfast for many months. Oats can change bad bacteria into good bacteria over time, which must improve the skin, as 90% of our immune system is in the gut.
Your skin needs rest from everything including mosiurisers. For a while it will be dry and cracked, but eventually (with just a daily shower) it will start to heal, after a few months.
After this try Jojoba oil, it is the closest thing to human skin (in terms of an oil and natural skin oils) and it isn't supposed to clog the pores. I can just about tolerate it and my skin hates every moisturiser. I have seen healing when using Jojoba oil.
I use this one: https://www.amazon.co.uk/gp/product/B00VSH7LAG/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1
Something else you can try is pure Aloe Vera, make sure it is 100% pure, like this one. https://www.amazon.co.uk/gp/product/B0128PJ7T4/ref=oh_aui_detailpage_o08_s00?ie=UTF8&psc=1
I have also used this natural moisturiser, which doesn't seem to irritate like doctor prescribed ones. https://www.amazon.co.uk/gp/product/B00MQ4Y2SO/ref=oh_aui_detailpage_o05_s00?ie=UTF8&psc=1
I used to take Cyclosporin but stopped it after my blood pressure started to rise. If you allow the skin to heal naturally (with just water in the shower once a day), you should be able to stop the Cyclosporin. Personally I would stop it now, and allow the skin to heal. It may get worse before it gets better, but mine did too.
I am not a doctor, but I have been where you are, and been through TSW.
Hi Jenny, I have just read your latest blog and feel your pain. Having eczema is incredibly lonely, it is with you 24/7, no escaping and for most it is a lifelong condition that you learn to live with, and sadly the bad times, as i am experiencing right now are bad.
ReplyDeleteI dont know about you but as i have got older i have become more aware of the impact it has on my life, when it is bad i can be really irritable and not even be aware of it and as you mention on the bad days when you just dont know what to do it is really tough. trying to explain eczema to others is really hard, yes it is an itch, but it is incessant, it never leaves you, a part of my body is itching all of the time, its whether you do something about it or not.
The one thing i refuse though is to let it stop me meeting up with friends and doing things, life is too short as it is, it makes me more self conscious when it is bad but i have to think who cares, im not hurting anyone i am just out having a good time with friends, and every now and then it is worth having a blow out, eat some naughty food and have a couple of glasses of wine, be ready for the repercussions, but try to embrace life whether its trying something new each day or setting yourself a personal challenge, it makes things more fun and is a distraction to your eczema as well. :-)
I hope your skin has got a bit better as the month has gone on :-)
i'm a little late here but..this post is me. this hit me so hard. i feel the same way now and my doctor is sending me to a psychiatrist... don't really know where to go from here. i am so glad you are feeling better though. if you have any tips, please share :)
ReplyDeletei've had eczema my entire life but it got really bad about 2 years ago.. i can't help thinking it might be because of my SO since we got together around 2 years ago as well and i don't know what do to or how to feel about it. i haven't been using cortisone creams long enough for it to be red skin syndrome. at this point i'm afraid to go to bed because i don't sleep through due to itching and dryness, and waking up is me sitting there for an hour trying to get my skin moisturized, then sweeping up the pile of dead skin i left and washing my sheets, day after day.. my doctor has started me on ciclosporine now so i guess all i do is wait.. but i can't help wondering if it'll stay away (if it does wind up going away)
anyway sorry for the long comment (word vomit as well) i just somehow needed to get this off my chest. i hope you are doing better but according to your newest post, you are :)
love the blog and all the support for you!
Hi Jenny. I totally see where you are coming from with this one. Having this condition has done the same to me. The thought of wearing clothes that reveal any skin atall, worrying about if wearing make up will make my skin worse and worrying about drinking has made me stay in night and night for the past year or so.
ReplyDeleteI finally made the decision to get signed off work to try and take care of myself this week and I'm so glad I did! Maybe I will make that night out for Christmas!
I love reading your blog and you actually helped me to diagnose my own dermatillomania which I'm now getting help for so thank you!
Xxx
Hi Jenny,
ReplyDeleteYour blog is inspirational and a breath of fresh air. I have had chronic eczema for 35 years and I can totally relate to feeling alone. Most people, even those who have good intentions or even medical experts, have absolutely no idea what it is like to have this cursed skin condition.
I made a joke about this to someone the other day, saying that I wish I could wake up in the morning and breathe deeply (without having to puff on my inhaler and blow my nose) or be itchy. They said, "Like me, then?"
If only they knew... Feeling scared of how much the shower is going to sting or not knowing how to face people at work with half your face flaking off. Innocent people asking if you've ever tried E45 or advising you not to scratch - if only it were that simple?!
Keep posting! Your message is reassuring and inspiring to others!
Best,
Kim
After lot of researched I got foderma serum with the hopes that my mild case of eczema on my forehead and nose and eyebrows would be helped and I think it has somewhat. It's better than it was. I started out using it too heavily and noticed I was getting it on my hair from my hands. I use less and I'm much happier.
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