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Friday, 6 December 2013

Eczema/ Chronic Illness & Friendships

I've touched upon this issue in the past and I've recently read more posts on the subject so I thought I'd talk about the topic in more detail as it has been playing on my mind for a few weeks now. This was tough to write but I felt it was necessary even as just some form of release for my own sake.


I of course don't have fleas but the sentiment still stands


Living with a chronic and debilitating illness can be very lonely indeed. Especially so when in one moment you're living life as intended; working hard, playing hard, having a laugh with friends and going on all manner of adventures, and in the next breath you've suddenly become so riddled with illness that you are restricted by what you can now do.

I've found out first hand the devastating impact that this can have on friendships.

I've never been a massive socialite but I did have good friends surrounding me that I could trust and have a laugh with.

At the point that I first became extremely ill, back in January 2009, pretty much out of no where I found my condition rapidly worsening despite my and the dermatologists best attempts to deter it. It was an extremely difficult year. I was in the final half of my hectic Art Foundation course, specialising in textiles and costume and had a part time evening (18hrs a week) job in a supermarket working the produce section.

I had a good group of girl friends of whom I would go out with from time to time, as well as other friends who had gone off to University but who I would go and visit. My illness became so debilitating that I could no longer get dressed and was forced to stay at home, unable to attend college to see my friends and only sometimes managing to get into work/ restricting my duties. It was like this for a few months and I found myself becoming more anxious, stressed and upset at the situation.

Fast forward a few months and although my skin was still a complete mess I managed to have more good days where I could see my friends. I relished these days and was so happy that although my confidence had been knocked I had people I could fall back on to boost me up.

In September I was finally well enough, despite still having extremely bad skin, to go off and attend University. Here I made some good friends and also met Shane. Life became manageable for the next few months, I had a routine that was working for my skin and even the new stresses of Uni and socialising weren't enough to stop me from having a good time. I finally felt as though I was perhaps "normal" again. Just with flaky, dry, eczematous skin.

January 2010 came round, a whole entire year since my bad eczema first properly began. I went to see the dermatologist at Lincoln hospital as I hadn't now seen the one near to my home town for around 4-5 months and needed some attention regarding my skin. I was given Ciclosporin and it really did help me. I still had some bad days but when my dosage was upped enough I became invincible. I could now do all sorts of unimaginable things such as going the gym, drinking with little itching, I even went home to see my Mum and the cats and my skin didn't flare one bit. My asthma did though. I was then taken off that magical drug as my blood pressure began to rise. It never worked in the same way again.

My skin started becoming really bad again. It was affecting my social life and even University. There were some subjects relevant to my course that I was unable to fully take part in because of my severe allergies, such as gilding because of the rabbit skin glue used and also the animal fur brushes to apply the gold leaf itself.

I found myself having to pick and choose events relevant to my own interests which made me become very selfish indeed. I would go on nights out, knowing that I would regret it as soon as I came home but I would only do it to my own expense. Looking back, you can't help but be selfish with a condition such as this as you know that if you do do something out of your comfort zone it will have severe implications later on for your skin, but now I feel so utterly horrible for ruining my own social life and pushing others who cared away from me.

I began to fall into a deep depression due my condition. Life was miserable. I started to become snappy at others for my short comings and in turn lost great friendships. I felt misunderstood because people didn't seem to understand the full nature of my condition and why I had become how I was. They didn't seem to realise I was in the midst of depression and it only made everything so much worse and I blamed myself. It didn't help that I decided to move out of my student house and in with Shane for personal reasons, such as being able to roam around naked without worrying about my housemates seeing me, they just saw it as me abandoning them and it just all spiraled out of control.

In my last year of University I started to attend counselling/ CBT sessions to boost my morale. They worked for me for the most part and I'm no longer in that ditch of depression but I do still struggle to maintain friendships but that's still really down to my condition. It's difficult to socialise with others when you're stuck inside the house all the time unable to get dresssed. Shane of course has been my rock in all of this. He has experienced all of my highs and lows and been there for me through thick and thin. I think because he has seen me as I am through the entirety of this he is more understanding than anyone else could ever be because he has literally witnessed it all: the state of my skin, my moods, my lowest points, my inability to maintain relationships and so on and so forth. He just gets that I am incapacitated and that I can't help it.

I think it takes someone with a great sense of commitment to fully understand the nature of an illness even if they themselves are of good health. I can understand why a lot of my 'friends' are no longer there for me, other than me turning into something of a bitch to some of them who I needed most... of which I'm incredibly sorry for, if I could turn back the clock believe me, I really would.

I also find that people are scared of the unknown. I found some of my other friends drift away from me and I can only assume it is because they are scared and they just don't know how to be there for me when times are rough.

Finding out about Topical Steroid Withdrawal has given me hope that I won't always be stuck with such a debilitating condition. I will be able to have my life back and in fact have already started to get some of it back, albeit slowly.

Next year when I'm better I want a fresh start.

This explains it better than I did


9 comments :

  1. Hi Jenny

    I had a great friend in my last year of high school. She came from a college of the arts and had a great sense of humour. We were both a bit wacky and had loads of fun together. That was 25 years ago. I haven't really had a friend since then. Except my husband of course.

    I had to quit uni half way through because of my skin. I traveled to the north of Australia during winter and then back down south for summer. I found that sun and salt water were great for me. Heck, I even hung out at a nudist beach one summer so I could get sun all over me. That was such a cool experience. Instead of people positioning their towels and bodies equal distances from each other like they do at regular public beaches, everyone would gather together and chat. These people were very friendly to me and when we played nude volleyball on the beach I really felt like I belonged. We just laughed and laughed. As you can imagine there were lots of jiggly bits flying around and people falling in the sand.

    Anyway, I get my fix for human contact by talking to strangers as if we have known each other for ages. It's opportunistic and it works.

    My 2 sons who are 6 and 8 years old have never been to a friends house to play. They have never had a friend come over to our house to play.
    I organised for my husband to join a football supporters club so that at least he could be with other people.

    For me personally, I haven't had the experience of people drifting away. I stay away from people. The whole hair sticking to the raw flesh behind my red swollen ears thing is not me. I get the feeling that people think that having uncontrollable eczema is a really dumb choice. This is not my choice and this is not me.

    My bridesmaid at my wedding was a lovely woman that I used to share a house with once. I was working at sea most of the time so we never really got to know each other.

    An immunologist asked me recently "What do you do if you go to a friends house for dinner and they put peanuts in the meal?" I just looked at him and couldn't answer. Was he teasing me or did he genuinely believe that I had that kind of lifestyle? I don't have friends. I have eczema.

    I now know that it's only topical steroid withdrawal. After I do the whole burning from the inside, shiver, ooze, itch, shed and do it all again thing I will be able to have friends.

    We will play and sing and dance and laugh and hug and laugh again!
    I love lot's of people.They just don't know about it.

    I'm sending lots of love to you from Darwin Australia.
    There's a time difference so hopefully it doesn't wake you up when it arrives.

    ReplyDelete
    Replies
    1. Hi lovely, thanks for your comment! It's very insightful and gave another view of this horrible TSW journey. You are right, we do drift away from others too and not always on purpose. Something I didn't really mention in this post is that because I've gotten to this point with lack of friendships and with the depression I suffered from last year, I've reached a point where I now no longer mind my own company so the long days of being alone are so much easier to get through now.

      Thanks again :) feel free to comment/ email me at any time!xx

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  2. I don't have eczema, I have rosacea. The psychological impact is the same. I actually got rosacea from topical steroids. I hate those things! They are evil!

    ReplyDelete
    Replies
    1. Topical steroids sure have a lot to answer for don't they! Ugh. Horrible things. How is your withdrawal going?x

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  3. Hey there Jenny,

    Wrt to depression, I fell into a deep depression that required me taking antidepressants to keep me going. During that time I kept to my closed ones only, shutting of all contact with my friends, colleagues. As my skin progressed, it lifted naturally and I took myself out of the meds.

    I'd say for those having depression, determine if it is the skin that is the root cause or it is inherent in your personality or mood. Most depressive symptoms will lift for TSW sufferers as our skin improves!

    cheers!
    Leslie
    http://saynototopicalsteroids.wordpress.com

    ReplyDelete
    Replies
    1. Hi Leslie, thanks for your comment! So sorry to hear that your depression was so bad. I do agree with you though that a lot of the depression is down to the skin itself, though of course there are obviously other things that factor into it, such as the feeling worthless etc. which isn't really down to just having awful skin. As life begins to become easier with the skin, life itself will in turn become easier :)

      x

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  4. Hi Jenny

    I have been reading your Blog and feel an odd sense off warmth in my heart, I have a 3 year old Daughter who has Atopic eczema, she has been on Topical steroids since she was 2months old, I have taken her off them now for 3 weeks and as we speak she has the exact same rash as your pictures, every night i lie awake for hours just rubbing her with epizone A or SBR just to lubricate her skin while she cries and scratches herself till she bleeds, it breaks my heart and i wish i could bear the pain for Her. we are now at a place where we have tried everything and have decided to put her on immunesuppresants, we just want her to have a normal life. thank you for your story and your updates it really has opened my eyes more to this horrible thing called eczema.

    Carmen

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  5. Hi Jenny,
    Thanks for sharing. Really appreciate your transparency.I have ezcema from young till now (middle age). Having a bad flare now too. Having to bear with the pain and the nauceating smell of the weeping fluid, depressing moments when clearing the flakes off my bed everyday, i am going back to a diet i tried few years back that worked miracle. Due lack of discipline i stopped and the monster came back.

    Not sure if you heard of the alkaline diet? If you are interested you can get a copy of this book called The PH Miracle by Dr Robert O Young. The principle is that our blood needs to maintain a PH of 7.365 as this is the best position to fight off the bacteria, etc and keep our body protected. Food will be the first source of this alkalinity needed but if all we take is acidic food then our body will turn to the organs and extract the minerals to maintain the slight alkalinity needed. This is when our body goes crazy.You can read the book for the actual and additional benefits of this diet. 

    After i followed a strict regime of this diet (i skipped the detox part, went straight into the diet) i saw improvement after 1 week. After 1 to 2 months the sores that had been weeping for so long suddenly cleared up. I no longer feel itchy and the vicious cycle stopped. Rashes were gone. Darken skin areas cleared up too (i did not expect this to happen so was really thrilled to find out). My digestive system improved too. No more embarassing gas and the poopoo is not smelly.

    The diet is to keep the acidic foods off - sugar, meat except fish, dairy products, yeast, caffeine, etc. Tomatoes, avocadoes, vegetables, fruits like unripe banana, lemon, grapefruit, apples are good. Minimum salad dressing. Almond nuts if u need a snack to munch. Soya is a good substitute for milk too. I know this is difficult but no choice. I am also trying to see if i can find a more sustainable form of alkaline diet.

    I hope you can try and see if it work for you as well. I don't think i can carry on living with this monster. It has serious affected my quality of life.

     I really hope you can get completely delivered from this monster and gain back your beautiful skin and many more that was lost. You are a brave and beautiful lady. Jesus loves you and so do many of the folks here. God bless

    Osk

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    ReplyDelete