A Brief History of Eczema and Romance

A couple of weeks ago Jenny and myself celebrated our four year anniversary, and celebrate it we did in the only way we knew how, with copious amounts of cake and pizza. Whilst it was naturally a happy occasion, it was also seen as an opportunity to look back on these past four years and the impact Jenny's condition has helped in shaping, and ultimately defining, our relationship.

We met online on a forum for a Heavy Metal festival after discovering that we both went to the same University and had both expressed an interest in setting up a Rock Society at the Uni. I can barely recall the early conversations but it was evident from an early stage that eczema was a major point in Jenny's life, it felt at times like she was warning me about her condition to ease any awkwardness when we met up. She had spent the majority of the summer housebound because of a really bad flare, before it managed to almost clear up in time for her to go to University.

'White' Jenny and me with 'short' hair

My memory is terrible at best, so much of this may be completely misremembered or completely made up. The first experience I had of Jenny's post-shower routine was completely accidental. Apparently I stayed over the night before and didn't take the hint to leave the next morning, or so I'm told, I'm not sure whether this is Jenny just taking advantage of my terrible memory or if I was that stupid. Knowing now that it can take her hours before she's able to get dressed I don't know how she coped with a presumably creepy relative stranger refusing to leave her room. She must have been OK with it though as four years later we're still together.

In retrospect in the early days I wasn't relied on that heavily by Jenny with regards to her condition; simply to help apply cream to the areas of her back that she couldn't reach, help keep the patch test stuck to her back, or when she was particularly itchy cook dinner for her. Whilst we were both at University I often went with her to hospital for her fortnightly Dermatology appointments, something I now kind of miss, just as it at least meant I knew/could remember what was going on. In hindsight we never realised how easy it was back then, we were both in a reasonably normal relationship.

I remember the first time I saw Jenny had an Asthma attack I was just frozen with fear. Whilst it was all fairly familiar to Jenny and her mum, I had no idea what was going on, so the sight of her panicking and then being treated by paramedics and carried downstairs in her mum's house into an Ambulance was pretty distressing. It felt like an eternity whilst the paramedics were doing their necessary procedures in the Ambulance outside, especially when I had no idea what was going on. All in all it was just a routine severe asthma attack, Jenny was more embarrassed than anything else, but at the time 100s of thoughts were flooding through my mind as to what was or could be happening. Compared to some of the things we have been through since, such as the Eczema Herpeticum or the Minor Stroke, it really seems insignificant, but it helped prepare me for what was to come.

'Slightly White' Jenny and Me

It's depressing to mention, but there are more times than I care to think where I feel much more like Jenny's carer than her partner. Her condition has been a defining feature of our relationship for a long time, not a day goes by without it having some effect on either of us. I learnt early on that I would have to sacrifice a lot for the sake of Jenny's health. One of the more trivial examples of this is when I foolishly offered up my face, or rather the blackheads and stray eyebrow hairs on it, to Jenny in an attempt to get her to stop scratching hers to pieces. This one time offer to try and save her from herself has now been taken as an all access pass and at any moment when Jenny is feeling particularly irritable I can sense that my face is in danger of being pounced on. Of course however much this may 'hurt' me or be of general annoyance, it's far better than the alternative, even if it does feel a little bit weird, although perhaps there is an explanation behind it all.

Perhaps one of the strangest affects Jenny's condition has had on our relationship is how I now mostly associate Jenny being naked/mostly unclothed with being ill. This is not because of some deep lying exhibitionist tendencies, but rather because of how long her skin could take to absorb all the moisturiser after showering, or if her skin is particularly irritable. So when I come home from work I can find out instantly what type of day she has had by how fully clothed she is. It's to the point where a few weeks ago when Jenny was able to get both fully dressed and her skin was unnaturally pale that it confused me and I almost didn't recognise her. That rather confusing moment just goes to show how long it has been since she's been a shade other than pink.

At times we can struggle to sit on the same couch when Jenny is really bad and sleeping in the same bed has become something of a distant memory. It used to be an occasional thing, reserved only for the times when Jenny's skin was bad enough for my presence in the same bed to be an irritant. At university when all this was new on particularly bad nights if I didn't go back to my own flat, I used to get Jenny's sleeping bag out to sleep at the foot of her bed. Sometimes my decision making on whether to stay at her's when her skin was bad was helped along the way by a mixture of the weather, my own tiredness and laziness, but also whether or not I felt she would need me in the morning. I must say I don't miss sleeping on the floor, I know my back certainly doesn't.

'Red' Jenny and Me

Since moving into the new house last year sleeping in separate beds has just become the norm, partly because Jenny's health has demanded it but also because on the rare occasions she is well enough to share the bed I'm so conscious of making her worse that I often decide not to. It's upsetting, and it means that on some days I won't see her until much later in the evening and I'm often left waiting in the morning for her to wake up and text me so I know what state her skin is in. There is little I can do if it is bad in truth, but otherwise it gives me peace of mind and helps prepare me for the day ahead. 'Our' bedroom is referred to as Jenny's bedroom, simply out of habit and honesty, but it doesn't make it any less upsetting to hear. One of the deciding factors behind moving into the three bedroom house that we did was because we knew I would essentially need my own bedroom for the times when Jenny's health was bad. We never thought it would become a permanent thing though. 'My' bedroom is currently mostly just used as a dumping ground for all the washing we find ourselves doing and 90% of the time I can be found sleeping on the sofa bed downstairs.

It also means I have lost track of the medication she is on. Every night (and morning) used to be the same routine of me making sure Jenny has taken the required medicine and always had a drink, inhaler and cream to hand. Now, partly because of my terrible memory but also because I'm no longer part of this routine I can often completely forget the medication she is on, something which has been highlighted too often recently when I've been required by doctors/paramedics to grab things. It doesn't help matters when over the four years she has been on such a wide range of medication, with different combinations, but I do feel guilty for not being able to remember it all. I put it down mostly to the stress of the situation, combined with the fact that I'm very rarely part of that routine.

This heightened level of irritibleness naturally takes any kind of intimacy off the table, weeks or months can go by before I'm even able to kiss her. You can often get a decent insight into Jenny's health by how hairy my face is. Jenny's sensitive skin complains if there is even a hint of stubble on my face and as someone who always struggles for spare time, shaving becomes an afterthought. It just so happens that the longer I go without shaving the more I apparently slowly transform into Phil Mitchell, or a battered sausage as Jenny so affectionately calls him, so I guess it's rather fortunate that I only let my beard grow out when Jenny's ill.

The missing Mitchell?

I have been drafting this post for a couple of months now, mainly because I haven't had the time to, but also because I was having difficulty wording the following section. Without realising, through being Jenny's caregiver I have become part of the chronically ill community and this has opened my eyes to the difficulties those with chronic illnesses have getting into and maintaining relationships. Some of the things I've seen, heard and my imagination allows me to muster are pretty heartbreaking with regards to those out there suffering by themselves.

Ever since the first day I met Jenny she has been 'sick'. Whilst her skin was reasonably stable when we met, she had only recently recovered from a very rough patch. The cards were very much on the table health wise, that said the past four years have taken us both by surprise. If you were to have shown me what the next four years would have been like at the beginning it would've been hard to have not run a mile, without having the benefit of having fallen in love with each other. In some ways Jenny's health has helped strengthen our relationship from the start. There was no opportunity to fall into the trivial relationship issues that might befall couples our age, things got pretty serious fast and I just had to be there for her. This isn't an excuse to blow my own horn, as it were, Jenny's already done that, or even to rub it in the faces of those out there suffering with chronic illness alone, but rather an acknowledgement of the fact that we are both lucky.

Meeting Jenny has undeniably changed my life. It's certainly made it more 'challenging' as we both at times struggle to cope with her condition, but I wouldn't change it. The idea of her fighting this battle on her own terrifies me, and I do worry about those out there that have to, but as useless as I can be sometimes I like to think I'm better than nothing.

All I want to do is make Jenny happy, it's the sole reason why my 1000KM Challenge exists, but it is an ongoing battle against everything her condition throws at her. I hope that one day, however far away that might be, we will be able to live a 'normal' life, share the same bed, generally do things that couples do and allow her condition to drift away as a distant memory of a former life. In the meantime I'll just keep doing what I can to try and make life as comfortable as I can, to bring a smile to her face and on some days make life worth living.

GUEST POST: Living With Eczema: Part 1

As with any illness eczema can range from mild, moderate to severe but not many people seem to realise this. Here, I'd like to make a series of posts to talk about how eczema as a condition can be debilitating; making leading a "normal" life difficult.

I'll start off with my daily routine. It consists of waking up, often having to pry open swollen eyelids that have wept and become stuck together during the night, deciphering how much agony I'm in, and looking in the mirror to see the extent of the damage. The looking in the mirror part isn't the most constructive thing to do, but helps me to understand why I'm experiencing a certain amount of pain.

Next I'll pill pop some antihistamines and hop in the shower after I've slowly prised clothing, and even my hair, off my body that has become stuck to weeping sores. Depending on exactly how my skin is, a hot shower might be necessary to get rid of the stinging the water creates as it hits open sores from nightly scratching. Doctors always advise against this as hot water dries out the skin, but I find it helpful to give me some form of respite from the pain. It can take me hours just to shower when I'm in a bad way. Not just because of the pain or the worry of the pain, but because being as relaxed as I can be is beneficial for my skin. I find my only way to truly relax is to lay in the bath tub with the shower on my feet. Not exactly the best when the water bill needs paying, but I find bathing doesn't quite work for me.

After liberally applying Hydromol I get out and after getting dry enough, immediately slather my skin in white soft paraffin. It can take hours for the white soft paraffin to soak into my skin but I find that if I don't apply enough it just gets so sore and dry. Given the thickness of this ointment is a bit worrying that it still dries out my skin! If it's a particularly bad day I'll just whip out some Hydrocortisone, Eumovate or Betnovate steroid cream and even have to apply this to my face on a very regular basis. I haven't experienced any thinning of the skin per say, and have been doing this for more than 10 years.

On the days that my skin is so bad I often find that I can't actually get myself dressed because it is so sore, and covering myself up with clothing just exacerbates this. Instead I find I heal faster if I stay naked in a regulated temperature, applying white soft paraffin regularly throughout the day. Because I have to do this to cope, I find myself becoming increasingly lonely as I can't have visitors seeing me in this way. It also means that I am often off work ill due to my inability to get dressed, and the soreness would obviously prevent me from going.

Work have luckily been quite understanding and allow me to take shift swaps or holidays if I need it. This does however mean that I will never be able to withstand a full time job because I would require far too much time off. I'm happy with working short hours at one end of the week as the time around it allow for more recovery periods as it can take me hours and hours just to get myself ready to go somewhere.

I miss the days where I could get up at 8am, take a quick shower, or not even shower at all, just have a quick wash and be able to be ready to be somewhere for 9am. Nowadays I tend to wake up at 5:30/6am to ensure I can be ready for such a time. I envy those people who can just pop to the shop for some milk first thing in a morning, it just wouldn't be possible for me to do this. And it's such a simple thing. People take their quick routines for granted, not having to worry about the implications things can have on their health. I have to think about how I will dress that day not because of the weather, but what my skin dictates itself to feel most comfortable in.


I thought I'd also include this extract I wrote in an email to a friend when I was feeling particularly down as it gives an even better stand point:

"I just really am coming to the end of my tether with all this. One day I'll wake up and be absolutely fine, the next without warning I am so ill that I need emergency medical help. I'm not sure how much longer I can go on with this for. It impacts every single aspect of my life. Getting washed and dressed on a bad day can be one hell of a chore, not to mention time consuming and completely energy-zapping. Then there's work. No one wants an unreliable colleague, no matter how much they say they've got your back and wouldn't want to see you have to leave because you're a hard worker and you do a good job of it. But you're only a hard worker when you are well, that is the fine detail. My love life suffers greatly as well. Most days I can't even let Shane get close to me, or even to brush passed me accidently because it can trigger my skin to flare up, which sometimes means he will sleep downstairs, despite us having a king size bed because I just can't bare the extra warmth. I can't see my mum as often as I'd like because of my severe allergies to the animals. I can't even enjoy my hobbies any more because I'm allergic to textiles and of course, dust. Which in turn means, all my dreams and ambitions have had to come to a complete halt until my health improves, which seems ever unlikely with each passing day. I have to cancel so many plans and trips, which has meant losing many friends along the way as well.

I do try to keep optimistic with everything by being realistic but it is so terribly difficult when your illness defines you because there's no way you can bypass it. It can only be managed and coped with so much until you lose your motivation for everything, which I have done so many times now."

It's a tough life when the hard times take over.