Eczema Stories

Hello, I'm Jenny and I have had eczema, asthma and allergies since infancy. It is only in the last 4-5 years that my eczema has peaked, becoming severe and classing itself as a disability, changing my life for the worse. Up until this point I had been able to mostly manage my conditions by applying Hydrocortisone steroid ointment when my eczema flared up. As time went on I was given stronger and more potent steroid creams to try out and nothing would keep it at bay. From wet wraps to light treatment to immunotherapy to hypnotherapy, you can believe me that I tried it all.

 

At nearly 24 years old I've had a right old run of the mill in terms of the recurring infections I've gathered because of the severity of my eczema. These include: Eczema Herpeticum (herpes simplex virus spreads through eczema), MRSA (Staph infection resistant to most commonly used antibiotics), tonsillitis (self-explanatory), amongst other nasties, including a recent TIA/mini stroke! Since April 2012 I have had Eczema Herpeticum 7 times and now am on a permanent course of medication to attempt to keep it at bay.

I am at a point now that it seems the more medication I take, the more ill I become, both through my skin and otherwise. In May this year after seeing many convincing sources, both papers from Doctors and first-hand accounts from patients, I became aware that I could have developed a condition called Topical Steroid Addiction.Also referred to as Red Skin Syndrome or Steroid Induced Eczema, the condition develops through the overuse of steroid creams. Looking through the numerous personal accounts from those who had been diagnosed, I saw striking similarities between their skin and mine so I decided to stop using them. The only way to prevent the condition and revert back to the previous more manageable state is to go cold turkey from applying the creams. This is a long and arduous process, not to mention one of the hardest things you will ever endure, as your body releases back the toxins through the skin and allows for the production of the adrenal glands to re-function themselves in order to regain regulated levels of natural cortisol. You can read more detail of the phenomena over at www.itsan.org.

On top of the Topical Steroid Addiction process my body is suffering much more intensely and I put this down to the years of taking immunosuppressants which are primitively used to treat transplant patients, though they have shown to reduce inflammation in eczema patients, and can cause a plethora of lovely side effects including high blood pressure, kidney/ liver disease and cancers. Not enough research is being carried out on the long term effects of these synthetic medications so it isn't known how they will react when used for extended periods.

The general consensus on eczema seems to be that it is an itchy skin condition that results in localised inflammation and cracked skin, being somewhat of a hindrance but usually easily treatable with moisturisers, lotions and creams. As with any illness eczema can range from mild, moderate to severe but not many people seem to realise this. Many people only know it in its mildest form and so don't have a standpoint in which to view the complexity of severe eczema and how it can be debilitating, making leading a “normal” life difficult.

I have had to make many sacrifices with my lifestyle to accommodate my severe eczema that impact greatly on my quality of life. My condition changes daily, one day I will be fine, the next without warning I am so ill that I need a day of complete rest, not leaving the house and in the worst cases; emergency medical help. In my individual case, my skin becomes so sore and weepy that I can't put clothing on because it just makes it all the worse, in both the sense of heat, and also because it irritates and dries out my skin further. I find my best way to deal with a bad flare is to just spend the day being naked. This itself causes a whole array of problems with health and safety and the fact that I cannot leave the house, or generally carry out day-to-day activities.

Due to my inability to get dressed, my friendships have suffered greatly as I can't have friends over and the unpredictability of my condition means that I have had to cancel so many plans, and so have sadly lost friends along the way - Their loss! Akin to this, when I am at my worst and unable to leave the house but have made plans for certain events, having to cancel can be excruciating. It causes worry on my behalf that I'm letting people down, which in turn makes me worse, but if I do attend these events when I am experiencing a flare it can cost me days to repair myself. My love life suffers hugely as well. Most days I can't bare to let my partner get close, even just sitting next to me can cause a flare, which means he will sleep in another bed!  It isn't just me who suffers.

I am unable to cook and clean, which would be most people's idea of heaven, being waited on, but to me it is just an obstruction and something I'd rather not be dependent on! My bed is vacuumed on a daily basis because I shed that much skin. My water bills are through the roof because I have to do washing more often than is usual and require AT THE VERY LEAST two showers a day! I also spend a vast amount of money on special detergents and softener as I go through those quickly to keep up with all the washing.

 

 

Life with eczema is hard and there are so many aspects to it you wouldn't even think applied. Read Jenny's blog on talkhealth here