Words of help

Relationships, even when there is nothing wrong with either of you, can be tricky things. When one of you has a chronic illness, the level of trickiness just grows. It’s yet another thing that could with ease be destroyed in seconds. I have known and read many blogs from those whose illness was the final straw, and the relationship has ended, almost as soon as the diagnosis has been made, some don’t even make it that far. I know without a doubt, that I am extremely lucky in the fact that my husband hasn’t just as they say, “stood by me”, but he loves me as much, if not more now, than before. For both of us, our love just keeps growing, but that doesn’t mean that my health hasn’t and doesn’t cause us both problems. Clearly, I can’t speak for him, but if I can find those problems, then I’m sure he has done and does too. We wouldn’t be human if we didn’t, no one’s lives are a bed of roses, every second of the day.

The major issues that my illness brings with it to our marriage have all be discussed before, but I haven’t really spoken about the day to day ones. In fact, it was a line from yesterday’s post that made me realise that something was more than missing.

“When I do have to stand I find myself fighting so hard to stay upright, not because I’m scared of falling any longer, but because if I do, I know Adam is going to have just one more thing to worry about, the very thing my chair was supposed to take away.”

It’s those small worries, the things that happen daily where my first thought isn’t about me, but it’s about Adam, even when I might be the one in danger. If I weren’t ill, if I were living a normal everyday life, yes, Adam would enter my thoughts a lot, but he wouldn’t be there if I found myself tripping over a paving stone. Everything that happens to me, every change in my health that appears, I always think, “How will this affect Adam”. When your partner changes from just that and into your carer as well, everything changes. Even the tiniest thing in my life is now also in his, and I am very aware of that fact. Right now, yes, his life has changed dramatically and yes, he does a great deal for me, but he does still have his own life.

When you first become ill, little changes, it is nothing more than a factor to be thought about, but it really has little impact. Life goes on. You talk about, even plan a little but everything is distant, something that might or might not happen. It slowly picks up and in yourself, you know it is growing and slowly taking over, but you do everything to keep it as that, inside you. For me, I managed to push that right to the day I became housebound. Having only one working arm, many jobs became impossible. Adams first role as my carer had begun. Yes, before that he had taken on things like the heavier side of housework, but not having an arm, meant he had to prepare and bring meals and drinks to me. Directly caring for me. I as a person was impacting on his life. Those words “Adam, can you help me…..” never leave my lips without a great deal of thought. Not because do I believe for a second that he will say no, but because it contains so much more than a few words. Each time I ask for help, it’s yet another thing that I have pushed as far as I can, that I can’t do anymore, it’s an admission of my failing body. More than that, though, it’s an imposition on his life. It doesn’t matter if it is help for a one thing at that moment, or if it is something that will be that way forever, it’s still his time, his life.

Every day Adams work days start the same. Once showered and ready to go, I often wake with enough time to say goodbye, but either way, if I see him or not, he puts out a full glass of coke on my desk, as I am always up within the next 15 minutes. If I don’t see him them, he calls around 10 am, just to make sure that I’m OK. If the weather is good, he comes home for lunch, just spending about 25 minutes at home, before returning to walk all the way up the very steep hill to his work. If it’s raining or he can’t come home for any reason, he always phones me and we chat about nothing for ten minutes. In some ways, I prefer those days, not because I don’t see him, but he has then had a whole day away from the house. When Adam gets home from work, after doing a full day of running around the hospital, he starts by reading my mail. Mail I can no longer deal with, I miss read and tie myself in knots over, frequently they have left me in tears of frustration, occasionally fear and anger. It may only take him minutes, but they’re minutes that should be his. At 6:30, he helps me relocate from here to the settee, carrying all my stuff as I wheel myself there. He’s normally relaxing at that time, but so we can be together, I disturb him, making him stand up again to help me, taking two more minutes. At 7 pm he fetches me a gin and tonic, I can’t do it, as just like the glass in the morning, I’m incapable of carrying a full glass in my wheelchair, two more minutes, more time on his feet. At 8 pm we go together into the kitchen, where he supervises my medications. Sorting out not just my meds for that minute, but also for the next day. While I use my nebulizer, he also fills four small bottles with ginger beer, putting them back in the fridge so that during the day I can fetch them myself. He then empties the bin, sorts out the dishwasher, another fifteen minutes of organising, sorting out and preparing, doing all the things I once did. Then we’re free to return to the living room for the next hour, well that is unless I drink my coke too quickly, then he fetches me more. At 9 pm he helps me undress, prepare for and get into bed. His final nightly task is to sort out the washing. Then, at last, he can have his shower and fully relax. At the weekends, he does the general housework, assists me when showering to make sure I am actually dry and once a month spending four hours making my psyllium pancakes. At some point almost daily he has to run to my assistance, as I’ve dropped something or knocked something over. Then there are the accidents we try to pretend don’t happen, but they do happen when my bladder fails. All of this is the impact of my health so far on his daily life, the impact that anyone watching would see.

What they wouldn’t see, is the worry, the fear, and the frustration that comes with every single one of those days. Or the guilt that I feel every time I watch him having to do anything thing because of me. How every time he heads into the kitchen clutching my empty glass to fill it again, I watch him with half hung head and eyes that feel nothing but sorrow, for once more I’ve destroyed his peace and his rest. If he chances on seeing it, he tells me “Stop being so stupid, that’s what I’m here for”, and I always see the love in his eyes. I have burdened him with so much more to do than any individual should be expected to, and the worst thing is, this is just the start.

I know from what he says, the way he always checks when he’s not here, that he constantly worries about me. I know by the way that he appears in the middle of the night in the kitchen, once I’ve been to the loo, just to check that I’m OK, that even at night he doesn’t rest peacefully, just in case he is needed. I know by the way he doesn’t want to go to work, if I seem just a little too unsteady, too not awake for his liking, that to him, I come way above his work. I know he never stops worrying about me, hardly for a single second of a single hour. If the tables were turned would I be any different, well I like to think not, but none of us know, any more than we did before we became ill, how we can deal with anything like this.

Not once, have I asked him to do anything for me until, I have pushed it far past the point where I am no longer capable, but that doesn’t remove the guilt. The pressures of being chronically ill never end, not just for the carer but also for the patient. Don’t let anyone ever think that being waited on by the person you love is a pleasure, it’s not, it’s far from that. The list of things that lie ahead, that I won’t be able to do is vast, and I will anguish over every single one of them, and he will fuss, and pamper and tell me off for being so stupid, for waiting so long before asking for help. We have all the love in the world, but the one thing we don’t have is time and if anyone is looking for the true cruelty of illness on any relationship, it’s that.


Please read my blog from 2 years ago today – 07/04/2014 – Perfection?

I am starting with a warning, a warning to any woman who become disabled and her husband takes over the housework, make sure you go around your home and go over how to clean every single thing that is in your home, I do mean EVERYTHING, miss nothing and be precise. Adam decided without saying anything to me yesterday evening to wash two art nouveau style hanger that are in our hallway. Both where beautiful and both were made to look like ivory and gold, but in reality are made of some kind of ivory coloured compound, painted in what I would call old gold. I bought them not that long after we moved here and for what they are made of they weren’t cheap but they were perfect for my chosen positions for them. With out house…..