16 Nov 2013

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.

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