I feel bad for not answering a tweet I received a few minutes ago, I know I should have, but it was one of those statements that I knew was impossible to answer in just 140 characters, or even 4 or 5 times that. It was in response to one of my tweets I send out to bring them to my blog and they had simply added another line to one, what they added said “So dang true. Makes you feel like a burden too!!”I doubt there is a single one of us who hasn’t felt that way at some point and it doesn’t matter how many times those who are caring for us tell us that we aren’t a burden in any way, it doesn’t stop us from feeling it, often very deeply. I would be surprised that other than the laziest people in the world, once chronically ill doesn’t feel like a burden at some point. For me the first time I really felt it was when I had to start handing over jobs that I felt were mine, I don’t know how Adam saw them, but they were things that I just did, as for all my life had done them. I am sure that he did help at times before, but when I could no longer manage to stand long enough and didn’t have the energy any longer to do the housework, I had to ask him to take it over. For the first few months, I felt so guilty every time he did anything of my personal housework list, just getting the hoover out of the cupboard was enough to start that feeling of guilt. I was already housebound by this point, so although I was still working from home and bringing home a good wage, I still had it in my head that I was at home all the time, so surely I could manage it. I think that’s where the guilt comes in, we are just sat there, they are going out to work and then coming home, having to look after the house and run around fetching things for us. The longer you let yourself feel that guilt, the bigger that sense of burden grows, it is just like depression in that respect, let it take hold and it will take over every part of your life before you know it, mix it with depression and I don’t even want to try imagining what it does to you then.

Whenever I have spoken to Adam about it, he gives me what now seems to be his stock answer, “I’m your husband and it is my job to look after you”, the more I tried to talk to him the more frustrated he got with me. I think it was his frustration that got to me, I know that winding him up is never a really good idea, he is one of life’s moody people, push too hard and he starts to grumble just under his breath and huff and puff as he goes on about what he is doing, so I would leave it and let him get on with it. It was a slow learning curve for me, but I discovered the obvious, he didn’t see it as a burden, he just saw it as the way life now is and what he couldn’t deal with was me making a fuss about it. He also prefers to see me sat still, as he is also a worrier, his permanent worry is that I will fall and be really hurt, so the more I stay still, the happier he is. It has taken us a few years to come to an understanding, one developed through trial and error on both sides, I now understand that I can ask without guilt if I need something done for me and he knows that he has to give me some freedom to live as he can’t do everything for me. He says that I am most pig headed person he has ever met and in some ways he is right, I won’t give in to doing nothing before I actually have no other choice, but in other ways he is wrong, a pig-headed person doesn’t know what guilt is and doesn’t take into account other peoples feelings on any subject, they just do what they want.

We all feel like we are a burden at times, but to actually be a burden whoever is caring for you must feel forced into looking after you. Adam isn’t forced in any way what so ever. I might feel as though he is as if I were well, he wouldn’t have to do a lot of things he now has to do for me, but he doesn’t hold a grudge against me, he does against my PRMS and that is a very different thing, but me, no. He doesn’t have to be pushed into doing the housework, he might huff and puff about it, but he huffs and puffs about a lot of things, from his computer not being fast enough, to the fact he left something in another room and has to go and fetch it, everyone, grumbles about things that aren’t their personal idea of perfection. Even before I found myself asking him to do more and more for me, he wanted a maid, a cook and, in fact, the whole range of household staff and still does, including a masseur, but that’s just part of his lottery winner world. Does he really grudge doing things for me, not at all.

As time is going on there are more and more things that I have to hand over to him and ask him to take on, he is now my memory for everything from taking my meds to having a shower. Even if he is out and not actually able to come home and see it’s all done, he phones to ensure everything is running to routine as he knows just how important it is. He didn’t hesitate when I found myself totally unable to deal with the mail, or with people on the phone, he does all that for me, as I just get distressed and confused. I know and so does he, that what he does for me now is just scraping the surface, as time goes on he will have to do more and more and we have talked about it. I hate the idea that one day he will be caring for someone who is bedbound, feeding, washing and cleaning up after me, but he doesn’t seem phased by looking after me like that, he just says that what needs to be done will be done. No one wants to be on either side of that equation, but that is life, we don’t want to slowly disintegrate nor do we want to watch our partners disintegrate, becuase it hurts in a way that is beyond words. But it isn’t about want, it’s about life and that is how most life ends, we are just going to have to go through it a lot sooner than we ever thought.

There is one question that we all have to ask ourselves when we are feeling like a burden, “Why are they doing this for us?” No one has too, they could pack their stuff and leave without even saying goodbye if that was how they were inclined, but they don’t, they’re still here. They are still with us, happy to help, happy to care for us because of one thing, they love us, love doesn’t know that word burden, it doesn’t know it and it doesn’t understand it. It is love that walks back and forward to the kitchen for us, love that does the housework, changes the bed sheet, washes the dishes and runs to the shops because we can’t do it ourselves, it is love that keeps them with us. We’re not a burden because they love us, just as would have been the situation if we had found ourselves in their shoes, out of love, we would have cared for them. No one is a burden, not if there is love.

Read my blog from 2 years ago today – 12/05/13 – A slow painful day

Dragging my heels isn’t a trait that I usually would put into a description of myself, but yesterday’s strange feeling at the start of the day flourished into an inability to keep up with anything. I spent most of the day simply happy like a 4-year-old to find things to fiddle with, rather than doing what needed to be done. It is amazing the things that you can find just there in front of you, things that suddenly seem……..