What's it REALLY like to have chronic eczema?

This post has been written by many others before - but of course everyone has their own experiences and here's mine... Firstly I don't want sympathy - that doesn't help. I'd far rather those around me understood what I am going through and knew when to comment and when to say nothing (and when to tell me to stop scratching - hint - NEVER! it makes me feel like a small child being told off) I don't even remember when I first got diagnosed with eczema- age 3, so I'm told. I am now over 50 (ahem, well over 50). In nursery and infant school, none of the other kids ever wanted to hold my hand in games - giving me a lifelong aversion to group activities which involve contact with others. We all know kids can be cruel and the ones in my class were no exception. 'EEEWWWWWW I don't want to hold her hand Miss, she's all scabby'. The teachers did little to help - instead of explaining (which may well have mortified me even more) they just told us to stand next to each other, arms outstretched but not touching if it made us feel better (yet this only felt like the other kids were justified in treating me that way). That was fine by me. In infants it was on my hands which were inflamed and cracked and often bled when I moved my swollen and hard to bend fingers. Playing with paints or sand or whatever else wasn't easy as it got into the cuts and stung. Aged about 6 or 7, my mother gave me pocket money to spend at the Church Fayre. I chose a princess shaped bubble bath - it was one of the first things I ever bought by myself and I was excited it was something both nice, useful and unusual. The woman behind the stall refused to sell it to me until my 'mummy comes over' because she saw the state of my hands. I felt belittled, embarrassed, very angry and very very hurt that I had been denied something for something I couldn't help. At about age 7 or 8 I remember having a lot of large boils on my legs behind my knees - I have no idea if this is common in eczema or just me but the boils were often hot and very painful. I do remember, often, my dad having to lance and squeeze them (I'm not sure if this is encouraged these days for boils - or even if it was in the 1970s) I remember having the pus squeezed out was horrendously painful and I cried in pain. In highschool I remember the shame of having blotchy, itchy and scabby red arms and legs which itched and bled and were so painful to move. The white shirt part of the school uniform was a nightmare as it showed the blood where I'd scratched too hard. I therefore always wore the school jumper on top but this caused problems in the summer when the classrooms were often as hot as a greenhouse. If I got too hot, I'd sweat - making the itch worse. When doing P.E. I was always cold and preferred to wear long sports trousers and long sleeves - but again this stood out from the others and in school I just wanted to fit in. The sports teachers and I had a love hate relationship. I loved to skip sports and they hated me. I wasn't sporty - which I put down to the asthma which often comes as a package along with the eczema (I know - lucky me!). So many memories of my high school teacher selecting two team captains who would pick, one by one from the remainder of the girls. I was always in the last three to be picked. When the team captains got down to the dreggs - us 3, they just gave up chosing - not wanting any of us. As you can imagine this did wonders for my self esteem. Having a shower after games was another nightmare which luckily has been wiped from my memory - in a similar way to that of a car crash. All through school I was under the care of the local dermatology department of the local hospital. From my teens into my twenties I had regular visits as an inpatient for up to 3 weeks at a time where they put steroid ointment all over me, then wrapped me in zinc bandages, covered this with an emollient cream and then put bandages on top. I looked like an Egyptian Mummy. My skin always got better in hospital and after three weeks they would let me home and the skin would flare again. Whether this was because I wasn't having 24 hr care and rest or because I lived in a hoarded house with more dust, housedust mites and general grubbyness than should have been allowed - however nobody said anything as I never mentioned it - because as a child that was my house and as such I thought it was normal! (much as I am totally repulsed by hoarding and hoarders now). I can't count the number of times I was told I should grow out of it. It was also referred to as 'Atopic Eczema' - ie Childhood Eczema and not to worry - I should grow out of it. I have few specific memories of my skin's behaviour in my college years. I was still under the local Dermatology department but apart from giving me steroid tablets and ointments, there was little else they could do. On several occasions I was asked to come in for training sessions with new doctors or lectures in the University Hospital of Wales where I would be poked and prodded and asked, in my opinion, very stupid questions. I was once sent for a colposcopy at the age of about 25 after an irregular smear. As if it wasn't bad enough at that age being sent to have a camera put somewhere highly personal but to my horror, the male doctor took one look at my legs and asked if I had been on holiday and been attacked by mosquitos. Over the years I have tried 1) Acupuncture - takes away the heat and the itching but it returns after about a week. 2) Reiki - little or no effect 3) Reflexology - no effect on the skin at all (although it's very relaxing). 4) Homeopathy - Tried this twice - no change whatsoever - after ten sessions at £50 a time, (Finally the practiotioner told me if I didn't stop whatever I was doing to cause this (and neither she nor i knew what that was) I would be dead within 2 years. That was 6 years ago). 5) Faith Healing - this did clear up the heat and I did feel better - but again the effects didn't last. 6) Bath oils - helpful but again only temporary. 7) Wet wraps - works well but VERY messy and say goodbye to nice clothes and sheets. 8) Salt baths - dead sea salt or Epsom salts - helpful but not a cure. 9) Chinese Medicine - no difference at all. 10) Cutting out Dairy - limited success for a limited time. 11) Cutting out Wheat and gluten perhaps some success but very restrictive. 12) PUVA light treatment. No improvement at all (and have since been diagnosed as being allergic to UVB light and banned from ever having that treatment again. Within Dermatology I have tried Azathioprine, Methotrexate, Cyclosporin, Mycophenelate Mofitil, Protopic, Dermovate, Betnovate, Eumovate, Hydricortisone and Prednisolone. I've had patch testing where about 50 small discs about the size of a 5p piece are applied to your back, each with a trace of a chemical or allergen on. They are taped to your back for 3 days and the results deciphered at the end. Three times I had to postpone the test because the skin on my back wasn't clear enough of eczema for them to do the test. Mine came back that I wasn't allergic to anything they had tested me for. I have also had 'prick testing' (which, my doctor pointed out often is the name used to describe those who think the test is useful rather than the test itself). This involves putting a drop of a substance (nuts/lanolin/dust/fur etc) onto the skin and then pricking the skin with a needle. After a few minutes a hive will develop if you are allergic to the substance. This is apparently highly inaccurate though. I have tried hair analysis which returned a huge list of 32 items 18 of which I've never had a problem and it didn't pick up my nut allergy. I have spent MANY pounds buying various creams which people recomomend to me, and other than moisturising, none were of any great benefit nor did they make an ounce of difference. It's also common for people to recommendsomething which worked for them bit What you may not realise Eczema is not just a rash - please don't say 'Ahha yes. I had a nasty rash like that last summer, it was all over my left knee and lasted for days, it was so itchy I had to rub cream on it. It itched so much I almost damaged the skin - so I know how you feel.' NO YOU DON'T. You have no idea. The itch of eczema can be all emcompassing - so bad you can't think of anything else. So bad you literally shake and sweat with the extreme restraint it takes not to scratch. Wrecked with guilt at the urge to just rip holes in yourself until the blood is running literally down the skin. Even then it often still continues to itch. The scratching is almost orgasmic sometimes as the relief is so great when the itching stops. It can feel as if you are wearing someone else's skin - someone 2 sizes smaller than you. It won't stretch or flex properly and every movement is restrictive. when its really dry, every movement will feel like stretching thin tissue.paper which is breaking apart in many places all the way. People with eczema will often have their fingernails cut extremely short - this is a damage limitation excercise. Often the remaining part of the fingernail will be highly polished - this is not cosmetic - it is a result of so much scratching, the nails get 'polished' by the skin. Clothes - wearing white is a total nightmare as no colour shows up blood better. People experiencing an eczema flare will not wear white. Wearing black or navy is also not a good plan - the dry skin and falling flakes are highly visible over a black jumper or jacket - imagine it looking like extreme dandruff. Grey marl is your friend hiding both the blood and the flakes, Clothes and layers. Skin is there to protect the body and one of the ways healthy skin does this is to regulate the temperature of its owner. Hence you may find the eczema sufferer wearing many thin layers and taking them on and off MANY times each day. They will be hot when all around them are cold and then on the hottest day they will be reaching for an extra layer. It's possible they will be wearing long sleeves if their arms are affected even in the middle of summer. Shorts are a no go as is wearing a t-shirt or bare legs. Also so many clothes get totally ruined by the greasy stuff you have to put on your skin merely to stop it falling off. The grease soaks into clothes ruining them as it won't wash out. The clothes show up greasy marks and they start to smell of warm grease. Disgusting. If it's not grease on the clothes and bedsheets, it's flakes - millions and millions of tiny flakes - ever got out of bed to see what looks like sand all over the bed? Ever had to hoover your bra when you take it off? Sunshine - Some people will find their skin improves in a warm and sunny climate. Sadly for me that's not the case as I have been diagnosed with Actinic Atopic Eczema and I am allergic to UVB rays. I must not go out unprotected in the sun or I'm likely to have a severe flare up - recently this has stopped me going on holidays or for walks with friends. I can't go and have a dig in my garden in the sunshine. When everyone else is out enjoying the sunshine, I'm hibernating indoors. Career - Since I can remember, a job with a white or short sleeved uniform is a non starter for me. Also I’ve avoided anywhere where regualr chemicals or handwashing is part of the job - hairdressing or food preparation. Also retail can be a problem when your face and hands are awful and you don't want to face the public, who can often be ignorant and rude. Hair - if you have eczema on your scalp it's hell - if you try to put ointment on it, your hair soaks up the grease and looks dreadful. Your scalp will flake - should you use a dandruff shampoo for this? I have no idea as common opinion is dandruff comes with a greasy scalp - eczema is dry - will it just exacerbate it? You can't call anyone who knows and the pharmacists aren't a lot of use here either. Don't dye your hair as you could get an allergic reaction - you just have to put up with dead-rat brown with grey bits - tough luck. Likewise, try going to a hairdresser who isn't paricularly sympathetic. I have had a hairdresser shriek 'Ewwwwww - Sharon - come and look at this'. in the middle of a busy salon - turning all heads in my direction and then being told ' we can't dye over 'that' as the skin is all broken'. (she could have been more subtle). Also be careful what shampoo and conditioner you use as they could provoke a reaction. Smell - all skin has its own smell but unhealthy skin smells bad. Whether it be the amount of ointments and creams applied or the damaged skin, I don't know. I know that on days when my skin isn't behaving and where I have covered myself in emollients, at some point during the day I get a warm vaseline kind of smell wafting up at me. I get paranoid everyone else can smell it too. My skin is always clean but I can't wear perfumes or body sprays etc for fear of allergies. Dermatogists say it's not necessary to shower daily as that dries out the skin. Personally I prefer to be clean and covered in emollients than worry about being smelly. Sex - I'm not going to say too much here - I'm hardly the expert and - heavens my mates may be reading this - but can you imagine being covered head to foot in an itchy dry scabby rash and then having someone wanting to get frisky with you. Skin already on fire and they want what? Sweaty, painful, itchy - not going to happen - not only highly uncomfortable but so unsightly and extremely embarrassing - try again in 6 months to a year. Make-up - This will not cover eczema - it will soak into the skin making it look caked and showing every line and wrinkle. By noon the make up will have sokedd into the skin causing the skin to dry up and flake off. By 1pm you will have all of your make up with half of your face covering your shoulders. Some make up will cause allergies - only thing is you will have to wear it to find out if you are allergic. Face and neck eczema - This, in my opinion, is the very worst kind - it affects your confidence and ability to carry out a normal life. It feels as if everyone is staring at you and if you talk to someone you feel they are staring at your face and not listening to what you have to say. Many times I have been stared at in this way. When I've stopped talking they carry on staring, not realising I have finished talking. I want to run and hide under a stone. I feel disgusting. I want to go home and cry - but I can't cry - tears casue my face to flare up and the flare can last for weeks. I can't allow myself to cry. It dictates the kind of clothes I can wear (nothing which irritates my neck, nothing black, nothing white). It dictates how I wear my hair (try to hide my face but can't have it down as I get sweaty at the back of my neck - can't wear a ponytail as it's all around the back of my neck and will be visible. When it's bad I can think of little else, even moving hurts. I can't go out without being stared at. I'm always hot or cold and constantly scratching. I feel disgusting. I have no confidence. As I started writing this, I was in the middle of a massive flare up. I had just been on a ski holiday where my face flared up and looked like a tomato with white bits. I spent the days on the slopes covered in skiwear goggles and a scarf. In the evening I stayed in my room waiting for the last meal slot so I could slink down when the restaurant was empty to avoid the stares. I don't know if the stares were real because I couldn't bring myself to make eye contact. In my head they were real and that was enough. I am currently on the waiting list for a new biological drug. We will have to wait and see.