That longing to touch

We had a bank holiday this week, which meant that Adam was at home, rather than working. It’s totally thrown me, I don’t know how many times I have checked what day it is today, but I’m still lost. Adam spent it cooking my psyllium pancakes and worrying about his mother as it’s today that she will be having her mastectomy. He said that he’s been having bad headaches over the last week, not surprising really. He is stressed, far more stressed than normal. I went into the kitchen while he was stood there at the cooker and all I wanted to do was stand up and give him a cuddle, but I couldn’t. It wasn’t because he was visibly upset, it was simply because a few years ago, it was the sort of thing I would have just done. I would have just stood behind him and wrapped my arms around him, and simply held on while he continued what he was doing, or he turned around to face me. All those simple, little, spontaneous acts are gone. It’s not quite the same wheeling up behind him, pinning him with my chair, and finding my arms in line with his hips. Somehow, it just doesn’t work any longer. I used to love spontaneity, but when you have to think through every tiny action, consider how your wheels are going to get in the way, how much energy you have, what pain it might all cause and if you have the physical strength left, destroyed that long ago.

It’s rare now that we have a true cuddle. Well if you think about it for a few minutes, you would see why. It’s nothing to do with not loving each other, and everything to do with this stupid body of mine. I have two positions, sat down, or laid flat on my back. If you’re stood up and faced with someone who is sitting, how do you cuddle them? Harder still, how do I cuddle him? Whatever you try, it will be brief and not really comfortable, nothing like a true cuddle. I am now after many years of being ill, well acquainted with his stomach, not exactly the part I would prefer to see during our daily cuddles. If he comes down to my level, as he does every night to say “good night”, it requires a lot of strength in his quads, something that’s not always there for long. Even when we sit together on the settee, cuddling is hard work. I can’t sit still for long, I am always having to change position, either to breathe better or to relieve the pain. I’m never still for more than a couple of minutes, so it just doesn’t work. Adam is as always, scared of causing me pain, and takes it personally when I suddenly pull away or move him due to the pain. It’s not him, just me my body screaming it can’t take any more. Lying down isn’t any better. I can’t roll over, not even onto my side. I am stuck there flat on my back, and yes, he can cuddle me, but I can’t really cuddle him in return. All I can do is lie there, feeling like a spare part in life. Even if he helped to bring me onto my side, I couldn’t stay there for more than a few seconds, as the pain just builds and builds, until I flop once more onto my back.

Every single element of our lives has changed. Even at times like now, when all I want to do is try to take some of his pain away, mine gets in the way. All I could do yesterday was to talk, to try and use words to reassure and to sooth. Yes, we share the odd touch, reach out to each other in passing, but none of it is even close to the way we once were. It is at times like this that I get angry with my health. I feel so useless, so unable to do anything. He has taken tomorrow off work so that he can spend the day at the hospital with her, I will be stuck here, feeling beyond useless. I should be there for him and for her, but once again, my health wins. When it comes down to it, I am a head on a body that doesn’t work in anyway that is of use to anyone, not even me a lot of the time. I get angry at what has been taken away, from not just me, but from everyone that I care for. Acceptance doesn’t help them, and I know because I am human, that the logic that says, “I can’t do anything else”, doesn’t fill that space I once occupied. Tomorrow, no matter what the operation found or didn’t, there will be times when Adam will have that need to have my arms around him, and I, of course, I won’t be there.

In many ways, I am the living dead. To the outside world, I am gone, it is only those who come to me, know that I am alive to at all. To most, I am gone, just as completely as if I were dead, to others, I am the ghost, that empty space, that no matter how much I want to be filling it, will always be empty. Even to the few who know I am still alive, I am the body that no one quite knows how to touch, how to be with and even how to show love to. Thier not alone, as my once spontaneous nature, who didn’t care what others thought, would hug, hold hands with and be affectionate to those that I loved, no longer even knows where to start.

Being the owner of a physical form like mine, is a trial for all those around me, and even for many who aren’t. It is a position in this world that is hard to come to terms with, but can still be far better than most imagine. Love is the most amazing creature, as believe me, as an invisible force in this world, I have learned to understand it, better than many. I might have been forced to not be like others, but I’ve found many ways of still showing my love, of still being part of and of feeling it in return. The physical aspects of love, those moments where we pass it from one to another, don’t have to be physical at all. I don’t feel any less loved by Adam than I did on the day we married, and by refusing to remain invisible, by building a network of friends here online, I’ve found more love than I ever expected. Not once will any of you ever see me, nor I see you, but that doesn’t change a second of what we share, by sharing right here, your time with me.

 

Please read my blog from 2 years ago today – 04/05/2014 – Lightening strike

Over the last couple of weeks, I have been having more and more spasms in me rib cage. There have been the total lock downs which I have become used to, they don’t phase me any more than a spam in my arms or legs would, but now I have a new pain and it catches me off every single time it happens. They are sudden, sharp and painful, like lightning strikes that circle my torso and cause me to stop dead whatever I am doing and then they are gone. I know well enough that the length of time that spasm lasts can be anything from a second to weeks, but these are so different and have now been around long enough for me to add them to the list of things that are happening. The very first was when I was in the kitchen sorting out my lunch, I thought that I had caused it by twisting or maybe nipping a nerve, but while I was there it happened three times, but still I dismissed it. It didn’t happen again until the next day just as I was getting up and dressed and bang, I was stopped and in pain, not in the same intercostal….

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…..

Independent or Supported

For many of you out there this is the first day of normality after the holiday, here in Scotland there is still one more, today, so as you might guess I have my snoring companion for one more day. I had a phone call from my friend Jake last night, at first I thought it was just to say happy New Year, but those words were rapidly followed by “So which day do the decorations have to be down by?”. He is only 7 years younger than me but at times the questions he asks makes him seem much younger. I had actually been sitting watching Eastenders when the phone rang, by the time I crossed the room to pick it up, it had shifted to answerphone, I still picked it up but I couldn’t see the number on the display screen because it had switched over. I was sure that I actually saw Teressa’s name on the screen before it vanished, so I found her number and called, she seemed a little surprised to here from me, especially as it wasn’t her that called. We spoke for a few minutes but as we had talked last week for a long chat, we wished each other a happy New Year and I returned to trying to work out who called. Our phone like almost all these days has a display, but I couldn’t get it to show what the last number was that called, I pressed all the different buttons but none gave me a number that I could be sure had been the last to phone here. Adam was in the kitchen washing some glasses, so I took it to him feeling silly as I was beaten by phone, another to add to my list of, I just can’t do. It took him less than a second to find out it was Jake and I left the kitchen as sheepish as I went in.

Tasks like that are so simple but when your brain won’t answer your questions, your eyesight fuzzes up what is there to be seen, and your fingers press a collection of buttons and not just one, what chance do you have? I hate to think what might happen if you dumped me in a lift or in front of a bank machine, I think others would quickly have enough of me and just shove me to the side. It really are those sort of everyday simple tasks that I learned long ago that it was best not to even try, the results are all clearer in my mind than the processes are. Joking a side though, it is those simple things that quickly pile in on us and make it clear you just wouldn’t be able to manage the world out there by yourself. Living isn’t just about being pain free, it is about being able to be independent in the wider world, I have often wondered where I would be now if it wasn’t for Adam, he long ago took over that side of my life, in the truest meaning of the world I haven’t been independent for years. If I was on my own, I would need so many helpers just to get through a normal week that it would be a nightmare with carers coming and with the best will in the world not doing what I really want doing in the way I want it done. It is all very well government going on about independent living, it just isn’t possible for everyone and it probably extremely dangerous for many.

I expect that most people see independence meaning the big things, but in reality independence is all the little things. The things that most people don’t even think about as they do them daily, how do you open a door when you can’t remember which way a key turns or you can’t even get the key in the lock. When you find yourself not knowing where a dirty plate should go as you know it isn’t the sink, but can’t remember buying the dishwasher. Independence means not having someone follow your every move, ready to jump up if you fall. It means not being left feeling as though you have become the stupidest person to ever live, because you can’t do today, what yesterday would have been simple and no matter how much help you have, you will never be independent again. I can’t exist for any length of time now without someone there to help me, be it with a phone, a door or a thought process. I’m luck as the person is someone I know and I love, and also knows me and loves me, I have the support I need and also accept that I need it. I really don’t see how any government can replace what I have, maybe they should stop calling it independent living and call it supported living instead, I don’t think it would sound so much like a threat and more like a gift.