Blisters and spoons

How dealing with severe hand eczema is a bit like juggling the ‘spoons’ in spoon theory.

I’m the kind person who is always in a rush. I have a certain amount of things to get done in a day, and I dart between one thing and the next. I hate it when I have to stop to search for a piece of essential equipment. I’m always racing against the clock. I squeeze as much as I can into a day.

All this changed about four years ago. Something happened that meant I had to slow right down. It wasn’t multiple sclerosis or chronic fatigue syndrome, lupus or cancer. It wasn’t any those high profile diseases that are well known for making people reappraise their whole lives. It was eczema.

I know that a lot of people have eczema. And that many parents are grappling right now with children who are terribly debilitated by it. I have had eczema in different forms all through my life, although there have been periods when it hasn’t really bothered me very much. Four years ago, the eczema appeared on my hands. This wasn’t the first time I had had eczema on my hands, but this time it was different.

Itchy-palms

Whereas before the eczema was on the sides of my fingers, on the backs of my hands, knuckles, and on my wrists, this time it appeared on the palms of my hands and on the surfaces of my fingers that I use to touch things. That changed everything. Suddenly, I experienced pain and soreness every time I touched anything. The inevitable itching that accompanied the eczema was all the more intense for being located on the parts of my body that were particularly dense with nerve endings. It seemed it could only get worse. Dense clusters of itchy blisters eventually gave way to peeling skin. Skin peeled and peeled, eventually leaving a fragile and terribly thin layer of parchment-like skin.

Now I lived in a very different world. I started wearing cotton gloves to protect my hands. It wasn’t long before I started turning the gloves inside out so that the seams were pointing outwards. I couldn’t even bear to have the seams pressing against my skin. When I needed to touch something wet, I had a choice. I could either remove the gloves, get my hands wet, dry them and put the gloves back on, or I could don waterproof gloves over the top so that I didn’t have to remove the cotton gloves. As my skin flaked and peeled, the razor sharp edges would snag on the fibres and made it increasingly difficult to keep on putting the cotton gloves on and off, so increasingly I opted to wear waterproof gloves over the top whenever I wanted to do anything wet. Wet hands were bad news anyway, as my wettened skin always became more sensitive afterwards.

Working in the kitchen was the most trying. Peeling and chopping vegetables was a challenge. Carrots and potatoes slipped through my fingers and sometimes shot across the kitchen. My disposable vinyl gloves usually managed to get nicked or torn. This meant my cotton gloves would get wet, so I would have to change into clean dry pair before I could continue. Forging ahead with wet gloves usually stored up trouble for later, as my skin would never forgive me for leaving it wet for any length of time. Wearing waterproof gloves did not guarantee dry hands, even if they didn’t leak. Eventually perspiration would build up inside waterproof gloves, which meant that my hands would get damp after a certain length of time anyway.

I entered the world of having to make a decision every time I began a new task. How much do I fear damp hands at this moment? Which gloves should I put on? What can I achieve before my hands start to sweat inside these gloves? Cotton gloves alone were also pretty useless for more heavy-duty work such as going shopping and driving a car, not to mention gardening. Cotton gloves are not designed for such wear and tear. They rub against the surfaces of your hand, get grubby very quickly, and look rather shabby. And of course they are not waterproof which means that going out in the rain with them makes me feel anxious and a bit silly.

I managed to find some variations on gloves by searching the internet. I invested in cycle gloves and hockey gloves that I could wear over the top of my cotton gloves. They offered some firmer support and also some grip, as well as being tough enough to manage driving a car, handing shopping bags and trolleys, freezer goods, tins, packets, and so on. Since those early days of my adventures with gloves, I have accumulated quite a store of them. I have a whole drawer in my bedroom dedicated to gloves. Next to my skin I now wear cotton, viscose, silk, and a whole range of highly engineered moisture wicking fabrics. I have discovered external coatings on gloves that allow me to grip the credit cards in my purse. Some gloves will allow me to use my smart phone, others won’t.

SmartphoneCamera-with-gloves

My main motivation for writing this blog post was not so much to discuss gloves, but to talk about spoon theory. Spoon theory is a neat metaphor for expressing the amount of energy you have to get through a day – the possibilities available to you. You start the day with a certain number of spoons, and once you have spent them all you are out of choices. I feel very much like that when my hands are bad. I can only achieve so much in one day. If I do house work, I can’t do the garden. I can’t go shopping AND prepare a meal. If I hang out the washing, get it in again later and put it away, I might not be able to read a book that evening. I might not put the washing away the same day, though, as it’s difficult for me to work out whether or not it is dry. Depending on where the blisters are on my fingers, reading a book might be off the agenda anyway.

Just by seeing the links between my own situation and spoon theory, I feel connected to a wider community. However, I can’t help feeling a bit like an impostor. I haven’t seen anyone else relate hand eczema to spoon theory. How can I think that what I have is equivalent to some much more serious chronic diseases? Nevertheless, I’m starting to see how it can be a useful way of explaining to other people the wide ranging impact of having severe hand eczema.

Related

The Spoon Theory by Christine Miserandino http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

What is the Spoon Theory? http://thespoontheory.tumblr.com/post/44757754831/faq

Severe hand eczema: Major new clinical trial compares treatments “head to head”. http://www.bbc.co.uk/programmes/p03tqv2c

How bad can foot eczema be?

shoe-1029734_640I remember hearing a woman interviewed on the radio a few years ago. She was claiming income support (welfare) and lamented that she was unable to attend job interviews because she was allergic to shoes. This was at a time when the press were vilifying any unemployed people who appeared ‘undeserving’ of welfare payments. In the prevailing mood, it was difficult to accept the foot condition as a valid excuse.

At the time, even though I had already succumbed to severe hand eczema, foot eczema was just an abstract idea, something for my imagination. I felt thankful it was only on my hands, bad as that was. But I did develop eczema on my feet, and it was only a matter of months after that radio interview. And it turned out, I had become allergic to my shoes.

IMAG0847-adjusted-small
Foot eczema

It was bad. The itching was intense. Tense blisters appeared, making it impossible to put shoes on. I had to sleep with my feet hanging over the edge of the mattress, as I couldn’t stand even the weight of my feet on the bed.  I was thankful that I was able to work at home for several days, as it was impossible for me to leave the house.

Eventually, I had some patch testing. It revealed that I was allergic to two rubber accelerator chemicals (vulcanisers), which commonly occur in the rubber found in the soles of shoes. I still remember studying the vulcanisation (creating a polymer) of rubber in A level chemistry.  These substances can also be found in the adhesives used in joining leather.  As shoes become worn in and are exposed to moisture, the chemicals leach out and come in contact with the skin. Step number one – know your enemy!

Translating chemical names into which shoes you can wear is something else entirely. Shoes don’t come labelled conveniently with things such as ‘contains thiuram chemicals’ or ‘contains carbamates’. The dermatology advice was to ‘wear all-leather shoes with no inner sole (like moccasins), plastic shoes or wooden clogs. If you have difficulty acquiring shoes without rubber insoles, remove the insoles before wearing and replace with those cut from piano felt, cork, or plastic.’ Try going into a shoe shop and asking what their insoles are made of! Try removing the insoles from women’s shoes.  As I suspected that simply sweating was also a likely factor in my eczema, I was keen to avoid plastic shoes too. The advice was also to discard old socks, as they can harbour the harmful chemicals.

I bought some wooden clogs online, and discarded all my socks. Hobbling around with my sore, bare feet (not yet able to go sock shopping) in wooden clogs, I began my campaign to find wearable shoes.

SatraFootwearI contacted Satra Technology, a company based in Kettering, UK, known as a ‘leading technical authority for footwear and leather’. They advised me on alternatives to leather or plastic soles. Interestingly, thermoplastic rubber (TR) and crepe are not vulcanised, so they were safe. Also, I could look out for polyvinyl chloride (PVC), polyurethane (PU) and ethylene vinyl acetate (EVA) soles. Try going into a shoe shop and asking what their soles are made of.

Some shoe retailers were more helpful than others. I was very relieved to find that my recently acquired Trespass walking boots could get the thumbs up – the only rubber component was the outer sole – the midsole and insoles were fine. I discovered that many shoe manufacturers source the leathers and various components from all over the world. It was almost impossible for them to vouch for the exact materials used, especially the glues. Even craft shoemakers relied on glues/cements to keep their leathers in line.

The only assurance I could obtain on leather adhesives was with Gore Tex.  Clarks informed me that glues were not used in joining the uppers and linings of Gore Tex shoes. I was also very thankful when I found Easy Wellies, who made it extremely easy to search their stock for PVC boots and garden shoes.

I eventually had to give up on asking about the cements in leather shoes. My life was slipping away week by week, with one manufacturer after the other unable to give assurances on this. I was becoming tired of existing in PVC wellies and wooden clogs (and my hefty walking boots).  Step number 2 – avoiding the enemy – was proving very hard.

These days, my first stop for shoes is Hotter. Many, but not all, of their styles use polyurethane for soling. Yes! Quite a few of their styles contain elastic (made with rubber?), so I avoid those. Their customer services department is very helpful and will bend over backwards to research the various materials in their shoes. I buy their leather shoes on the understanding that one day I might have a reaction to the leather cement, although apparently they use it sparingly. I just try not to sweat.

Living with hand eczema

Have you ever experienced extreme itching and burning on your fingers and hands? If your skin erupts in clusters of tiny blisters filled with clear fluid, it’s possible you have a type of eczema called pompholyx. This is something I have personally been dealing with and trying to make sense of for the last two and a half years, and it seems a fitting subject for my first blog entry on the topic of health and science.

http://upload.wikimedia.org/wikipedia/commons/0/00/Finger_Pompholyx_1.tif
Finger Pompholyx 1

About 10 percent of people experience hand eczema, and it has a considerable impact on quality of life. It can be caused by contact with irritant chemicals or allergic reactions to non-irritant substances, and it is often claimed that emotional stress or a history of childhood eczema are key factors. Heat, cold, and sweating are also common triggers. Its impact on quality of life can be due to the centrality of our hands for every aspect of daily living and the extreme inconvenience of available measures to minimise exposure to hazards and to protect sore and itchy skin on fingers and hands. Itching is the number one source of distress, and itching on hands can be particularly harrowing.

The physiology of itching is still poorly understood. It is likely that certain chemical (e.g. insect bite) or physical (e.g. wool fibres) stimuli activate itch receptors that cause the brain to interpret the sensation as an itch. One of my personal theories is that the pressure of tense pinpoint pompholyx blisters onto the itch receptors also aggravates the itch. The inevitable scratching makes the skin sore and over-sensitive. Use of steroid creams and ointments leaves skin very dry and even more sensitive. Once the blistering has exhausted itself, the skin often starts to peel off. In my case, this occurred in the areas where the blisters had previously appeared.

Flakyhand
Peeling fingers and palm

At the peeling stage, loss of the tough epidermal layer that normally protects hands from wear and tear leaves the skin particularly fragile and vulnerable. When this first happened to me, I became acutely aware of how I used to take the skin on my palms for granted. Without this layer, I was unable to handle paper without causing my fingertips to bleed from the friction, and all sensations (heat, cold, touch) were magnified and distorted.

The epidermis also forms a barrier against micro-organisms. The bacterium Staphylococcus aureus commonly colonises the skin of people with eczema. This bacterial colonisation aggravates eczema. I have had some protracted episodes of skin flaking and erosion as a result. As you can infer from the close-up of my thumb, this state makes normal life impossible. Even the cotton gloves I have come to rely on would get caught up in the rough (and surprisingly sharp) edges of peeling skin.

Photo of infected and flaky thumb
Infected and flaky thumb

It is important to seek medical advice in case of infection. Extreme cases result in skin breakdown to the extent that the skin becomes ‘raw’ and tissue fluid weeps out. Cotton gloves are frequently recommended for protecting hands when carrying out any tasks that involve coming into contact with irritants. As many of these situations involve getting hands wet, thin vinyl (or PVC) gloves over the top of cotton gloves can provide a waterproof layer. These PVC gloves are not very strong when doing heavy cleaning or gardening jobs, and it is possible to get hold of thick PVC gloves if you have allergies to rubber or latex. I often wear these over the top of cotton + thin PVC gloves, as it makes it easier to slide the thicker gloves on.

Finding a soothing emollient cream or ointment and applying frequently is also important. It can be easy to just soldier on and hope the problem will go away, but if it doesn’t, make sure you get medical help. Probably one of the most useful things to consider with persistent hand eczema is to get some patch testing done. Patch testing involves applying a range of known contact allergens to the skin on the back for 48 hours, and then observing for signs of inflammation. In the UK, you will need a referral to a specialist clinic by your GP.

Here are a few online sources of useful information: http://www.patient.co.uk/doctor/Eczema-on-Hands-and-Feet.htm http://www.patient.co.uk/doctor/pompholyx-pro http://www.eczema.org/

Severe hand eczema: Major new clinical trial compares treatments “head to head”. http://www.bbc.co.uk/programmes/p03tqv2c