This post was originally supposed to be part of my daily series of posts during National Eczema Week, whilst I started well eventually I ran out of time steam and I was unable to keep up posting everyday. Before that it has been sitting in my drafts since June, occasionally being added to when I found a rare five minutes here and there. It is then somewhat fitting that the topic of this post is about the impact Jenny’s condition has had on my life and how it now means I have very little spare time.
‘Caregiver’ is a term I have only recently heard of, after stumbling across suburbankidinthecity‘s blog; reading through her post on the not-so-obvious truths of being a caregiver it felt like I was reading my own life. Since the day I first met Jenny she has been ‘sick’. However over the past year or so Jenny’s health has started to consistently deteriorate to the point where much of my day is spent either looking after her physical and mental well-being or recovering/preparing for the next time I’ll be called upon.
Last year in response to an abnormally high dust allergy reading Jenny was given a certificate from her Dermatologist forbidding her from any domestic cleaning for a year. Her health had meant that I picked up the majority of the cleaning duties anyway, but that result then firmly shifted the onus onto me.
Her urticaria (heat allergy) also means that she often find it’s difficult to cook meals for herself, as she can’t stand the heat of the kitchen as it brings her out in hives. The responsibility to cook each night again is then mine, although sometimes if I’m particularly tired or stressed I choose the quick and easy option (normally unhealthy too) or sometimes just order takeaway, but then instantly feel guilty for it.
Typically I would choose to cook something vaguely interesting and healthy anyway, but with Jenny’s health there is a bigger reason for doing so. I have recently started to try and cook two meals a night when Jenny is either at work the following evening, or I know I will be late home in an attempt to relieve some of this pressure the following day.
Whilst Jenny is still able to help out a little bit, when her health permits it, 99% of the ‘chores’ are all mine, meaning that if I don’t do them no one else will. I often have to tell Jenny off for even trying to help out sometimes as I know it will only cause her to flare up again. I would rather I had to do it all than Jenny try and help and make herself worse, even when that means it takes at least 2 times longer for the tasks to get done, or sometimes they just never get done.
I’m ashamed to admit that sometimes I’ve left pans ‘soaking’ in the sink overnight, or things have been left on the side for weeks before finally being put away, just this week I finally managed to put some clothes away that had been dumped on the spare bed upstairs several weeks ago. I recall that earlier this year we had some Christmas presents that we just sat in our living room been moved around occasionally to dust but never put away until March.
Working a 9 to 5 makes a lot of these tasks difficult, as often when I get home I just want to relax but I know there are 27 things to do before I can finally sit down at gone 10. This is where the respect for single parents who are able to work whilst also picking up all the responsibilities of looking after both a house and a loved one whilst firmly holding their shit together. If I get to bed before 11pm most nights it’s a success, as most of the days I’m still either doing the washing up, folding washing or cleaning the bathroom at this time. Often I’m forced to just set a cut off point where I stop and call it a night, but occasionally the pressure builds up so much that I reach a tipping point where I find myself cleaning the bathroom or tidying washing away at midnight for fear of melting down if I don’t.
A lot of what I have written above could be used to describe my past year, but since Jenny began Topical Steroid Withdrawal the amount of housework and pressure on me has increased two-fold. I never thought hoovering a bed would be a ‘thing’, but currently Jenny sheds enough skin on a nightly basis for it to have become part of my daily routine. Frankly, it’s depressing. Every evening I have to follow her tracks across the house hoovering up all the skin, before assessing the damage of the night before in the bedroom. The bedding will get changed every weekend without fail, sometimes twice or three times a week if Jenny has been bleeding or her skin has been weeping in the night.
The amount of towels we get through on a weekly basis can rival most hotels, Jenny will use between 3 and 4 most days. This then naturally leads to a never ending amount of washing, along with the aforementioned bedding without even taking into account clothes. It is easy to get stuck in an infinite loop of doing all the washing and then by the time everything is dry they’ve been used again and are back on top of the massive laundry pile.
Perhaps the hardest responsibility I have though of being a caregiver is being, or at least appearing to be strong when Jenny needs me. When shit hits the fan, and it has done, multiple times this year, I have to remain calm and reassure Jenny everything will be fine, even when most of the time I’m trying to convince myself too. In truth I have no answers, I never know how to do or say the right thing but whilst inside I’m panicking, outside I have to convince Jenny that I’m coping. This mask I have to wear is becoming increasingly fragile and it is only a matter of time before it disappears altogether.
The pressure I find myself under this year has been too much to handle on a few occasions, namely after Jenny’s TIA and her bout in hospital with Eczema Herpeticum. After returning home from hospital I found myself sitting on the couch in tears, playing over the events of the past 24 hours in my head and failing to hold it together. It’s frustrating that this year all the running and fundraising I am doing to try and raise awareness of Jenny’s condition and to potentially improve it, is using up my limited spare time and energy that would otherwise be used spending time/looking after her.
I feel that my adopted role as Jenny’s caregiver is having a big affect on my own health too. Over the past couple of years I have become increasingly jealous of other peoples carefree lifestyle, with their ability to go on holiday without any hassle and live their lives from one spontaneous day to the next. On some days just leaving the house with Jenny seems like an adventure worth talking about, and one that can sometimes require a lot of planning.
Sometimes I feel I grew up too fast. Whilst that has undoubtedly helped this year, it does make me look back at my teenage years and early 20s with regret. When I was younger all I wanted to do was to get on with life; get through University, get a job and move into a house with someone I love. I made the decision to not drink alcohol at 17 because I didn’t ‘enjoy’ it, but also because I was massively overweight and wanted to get healthier. In hindsight I feel that this decision was probably prompted by my desire to ‘grow up’ and get on with life.
People often say to me that this is a lot to try and handle for a 24 year old, albeit one going on 50, but this is a life I’ve now become accustomed to. The idea of going out on the ‘razz’ every night chasing skirt, as most seem to my age, sounds just as challenging and depressing to me.
Jenny often mocks me and my ‘serious face’ when at gigs as it often looks like I’m staring the band out and demanding they entertain me. Truth is it feels sometimes like I’ve completely lost the ability to relax and enjoy myself. I’m often over thinking every aspect of my life to the point where that when I’m somewhere I should be relaxed and enjoying myself I just end up checking my watch to see how close it is to ending. Maybe I just don’t like fun, I dunno. It’s something I am constantly reminded of though, take earlier today when I planned to have a long relaxing bath after a couple of especially stressful weeks, after 10 minutes or so I got bored and started thinking of all the other things I should be doing instead and got out.
I guess it boils down to the fact that I’ve always been a bit of a miserable bastard inside, and the pressure of being a ‘self-loathing narcissist’ that is responsible for the mental and physical well-being of someone else isn’t likely to change this fact.
For the time being I just have to keep ploughing on, as it’s unlikely that Jenny is going to wake up tomorrow and be healthy. There are a couple of Facebook groups online for those going through Topical Steroid Withdrawal and one for their caregivers, something that I have been meaning to make better use of. Everyone in these groups is either going, or has been through what Jenny and myself are, so it is a great source of support when I’m struggling to hold my shit together.
Ultimately though I feel we are both prisoners of Jenny’s condition and I consider our lives to be very much on hold until Jenny is ‘cured’.