A never ending circle

Building a new life is hard. Building one, when the only components available to you, aren’t the ones you want, is even harder. It’s something that we the chronically ill, have to do again and again, as slowly the things that we hold precious are taken away from us. It’s about six months now since I found myself having to give up my independence in a very personal way, by inviting a total stranger into my home, to shower me. Trust me, if you haven’t got to this point yet, it’s a huge step to find yourself taking. Going through the mental process that says there is no other option, is huge. Especially when you have someone right there in your home, who is more than willing to help you, but you just can’t take their help.

There really are something’s in life, that sharing with your husband, is one step too far. I may have been disabled for years now, but not once has Adam seen me naked, since my body fell apart and then ballooned. The last time he was in a shower with me, well let’s just say, getting clean wasn’t high on our agenda. Memories, that I prefer we both kept as they are, rather than letting my new reality, destroy them. I knew that every shower I had with someone else helping me, hurt him, but I couldn’t bear it any other way. It has taken me six months, to bring the size of that guilt, down to a manageable size, and to actually feel that I wasn’t doing it, to hurt him. It has also taken just as long, for me to not see the pain in his eyes when I back into the bathroom on a Saturday with my carer helping me. On Monday, I found a new guilt, the guilt of having someone, other than Adam, here to cook my lunch for me.

It seems to be a recurring theme, from the day I was diagnosed and realised that it wasn’t just my life, that was being turned upside down, but his too. The knowledge that my gorgeous twenty-three-year-old husband was suddenly married to someone, who couldn’t possibly be the wife, he thought he was marrying. That all those plans and dreams, were nothing, nothing but just memories of a life we would never live. All those invitations, the outings, and parties that we never went to, because of me and my health. Hardly a day went by when I didn’t feel guilty. Those days slowly stretched and became weeks and finally months. Being housebound threw a spanner in the works and I became guilty again, big time guilty, like no other guilt I had ever felt. When one part of marriage becomes housebound, so does the other. Yes, he has his working life, but little else, because he now feels guilty, about leaving me behind. Guilt appears to be contagious and every time you think you have it under control, it reappears in a new and twisted form.

I thought that when I asked for help with making lunch, that I was keeping myself safe. That I was putting Adam’s mind at rest, that nothing could happen to me when he wasn’t there, but from the day I asked for help, he suddenly came home every lunchtime, to do it himself, until that care could be arranged. Every time he came home, he said that he didn’t mind and that he was happy to be doing it. Despite the fact, that he had to rush here and back, during what was meant to be his lunchtime, his chance to relax. So now, I feel guilty for doing something that I thought was good.

When Laura arrived yesterday morning, I was pleased to see her. I had it all planned out so that I could teach her just what needed to be done, where everything lives in our kitchen and just what help I needed. I thought that it would feel good, good because I was taking positive steps. Steps that would make both of us happier, but I didn’t feel good, I felt guilty. Yes, I was happy with Laura, she’s great, everything that I was looking for in a carer, bright, friendly and willing to do whatever I needed. She made me feel safe, and she made me feel at ease, but I over all of that, I felt guilty. My wonderful, eager to help husband, wasn’t there. Without a doubt, I knew that he would be thinking of me and that he wouldn’t be feeling the way that I wanted him to, free, he’d be feeling left out.

We have talked many times about having both outside care and his care, can work together. How outside care, is about caring for both of us, giving him the freedom of choice, and me the freedom to be with other people. What we have never talked about is the guilt that goes with it. I know my husband, and without a doubt, he is going through just as muddled a range of emotions as I am. He will be hurting, that I have once again, chosen a complete stranger over him, yes, that is how he thinks, because he is human, but he will also be feeling guilty that he isn’t here and that he is having time off, from worry. Well, he will, when he stops worrying about how I am getting on with the carer. As I said, I know my husband, and I also know that he knows me, but we don’t talk about it.

Chronic illness is an emotional minefield and no matter how much you love each other, you tiptoe around those mines, in the aim of not upsetting the other. The last thing either of us wants is to tread on one, life is tough enough without that. Don’t get me wrong, we do talk about those important subjects, but when you know that the lifetime you promised to each other, isn’t a lifetime at all, then you tread more lightly. Plus emotions like guilt, well they are personal and talking it through would take more than the lifetime we have. We could talk forever, but without a doubt, our personal guilt will remain, because it’s a nasty little emotion that logic has no bearing on. Just like this crappy illness, it just has to be lived with but it has to be kept in check and occasionally written about.


Please read my blog from 2 years ago – 26/10/2014 – Drugs, right or wrong?

During yesterday afternoon I received a tweet that at first made me laugh, not because it was intended as a joke, but because of my last two posts. Two days off writing about improving understanding of chronic illness with those who aren’t actually ill and the simple changes and support that could make…..

Staying human

I’ve just completed my first 24 hours on my new tablets. Right now, I have totally mixed feelings about them. Thier called Mebeverine, I wish I knew where they get all these odd names for drugs, not the unpronounceable ones, they are down to the chemical make up, but the other names, that seem to vary from country to country. They make it very hard often to discuss how they work, especially, in this internet world where we can be talking to anyone from anywhere. Anyway, I have already managed to miss one dose, but I took it as soon as I remembered but it does mean, it couldn’t do its full work. The problem is, they aren’t taken at the same time, or anywhere near all the rest of the drugs that I take. Mebeverine has to be taken 20 minutes before meals three times a day. Even for someone with a brain, I am sure many forget them frequently. For someone like me, well, they are a ticking timebomb. Breakfast and lunch I managed fine, dinner time, it was an hour after I ate, before I even thought about them. This morning, well breakfast was 20 minutes late, which I have a feeling might just be what will happen a lot going forwards.

In many ways, I’m not sure if this first day is a truly fair test, as I following my 24 hour fast after my night of being sick, of course, means that my whole intestinal flow hasn’t settled properly yet. Three days had past without going to the loo until today, as my body doesn’t like it when things don’t happen just as they should. Nor is it helped by the fact that I haven’t really been feeling totally myself over that period. I’m not sure how to describe it, other than just odd. There’s been a lot of chest pain, breathing issues, and a huge and almost constant desire to lie down, as I feel somewhat light headed. New meds on top, well as I say, not the best test. On the good side, the pain felt less during the evening, but I woke once again with pain in my back and down my upper legs, that didn’t leave me, until three hours later, when I went to the loo. Ever since then, the pain in my upper abdomen has been bad. So do they work, well I’m really not sure, but they clearly don’t work the way that I wanted them to.

Life seems to be frenetic just now. Between my health being more active, the problems with getting to actually see a doctor and then just for fun, life threw something else on top of all of it. Yesterday morning, before Adam went to work, he told me that the washing machine had broken overnight. So yesterday afternoon, I had to go online and buy another one. I know that isn’t difficult these days, but it’s always one of those extra hassles, that life seems to find. In the past twelve months, we have already had to buy a new fridge freezer, new mattress, and a new cooker, now it’s the washing machine, what next.

I always thought that one of the joys of buying online was that you can totally avoid those annoying shop staff who try to sell you a ton of stuff on top, that you don’t need or want. Well, I was wrong. The phone rang this morning and there she was, all chirpy and smiling down the line. Her breezy good morning, her whole way of going over where we lived and then went into telling me the details of the machine I had bought, but nothing about it being on its way. I feel really guilty now for what I did next. I had already naturally stuttered and muddled my words a couple of times, and I saw a window, a way out of having to go through all that I didn’t want. I stopped her dead, and stuttered and stammered through the following. “I’m sorry, I’m not taking all this in, I have an illness that affects my brain, email me, please?” My acting skills are clearly honed, as I was patting myself on the back all the way through it. I have lived for so long hearing it, that putting it on, was easy, too easy and so wrong of me. She went straight to the end of the call and confirmed that our machine would be here in two days, exactly as I already knew.

I have only used my health in that way a handful of times. Every time I have done so, I have always felt guilty. It’s a guilt that I can’t help, as it feels so wrong of me, so wrong to make out that my health is worse than it really is, in that instant. Putting it on is just so wrong when you have spent your entire life, trying to cover it up. It’s wrong, because if I gave into the temptation at that second, might it just become too easy, to do such a thing. It’s wrong because, yes, that is where I am at my worst and might be, all the time in the future, but not now, not in this second. It’s wrong because I know without a doubt that there are people out there who don’t need to put it on, to push all the bad buttons, that’s their life and they so wish that it wasn’t. Yet, I did it. I just couldn’t be bothered listening to someone who I knew, was going to try and sell me insurance that I don’t want. I didn’t want to be on that phone because the phone freaks me out, I did it because I wanted to be anywhere, but on the phone. But that doesn’t make it right, so I feel guilty about it.

Chronic illness makes us feel guilty over so many things, from the occasions when we invited to attend, but genuinely couldn’t. To the ones we were invited to but used our health as an excuse not to go. It makes us feel guilty because we can’t go out with our partners, that their lives are tied to ours and what that means for them. We’re guilty about not being able to work, to contribute to both home and society. For sitting still, day in day out, watching out bodies turn into flab and being unable to do anything about it. Guilty for doing nothing, while we watch our partners do all the things we once did. It doesn’t matter what others say, how many times you’re told you’re being silly, that you can’t help how things are, you still feel it. Every time they fetch and carry for us, wait on us, aid us and care for us, there is always that guilt, as it shouldn’t be this way.

Guilt comes in so many different sizes, and from so many different places, but whatever the size of the pain that it causes, it always hurts. Unlike other pains, there is no magic pills to take, no relaxation or meditation, this is one pain that’s there, and even when you think it is gone, something always reminds us, and there it is again. It’s that pain that reminds us we’re still human, that we’re people who have hearts and care, that we have a conscience. It doesn’t matter how ill we become, all of those things remain true, all of them never just vanish. Our health may eat away at our bodies and brains, there are a million things that we have long forgotten, but somehow, we never forget how to be human. For us, it just makes life harder, but for those around us, it’s probably a good thing. Guilt is our monitor, our governor that keeps us being us, and removes the temptation to be, or do, anything else.


Please read my blog from 2 years ago today – 11/03/2014 – Hope dashed

I was listening to the news this morning as I always do when an article about MS and a new drug that has just been licensed in Scotland. I should have known before I even looked on Google that there would be some reason why this drug like so many others, would be of no use to me at all. It has happened time and time again, drugs appear and all too many of them are purely for relapse-remitting MS, so when I started to read and saw that it actually was for my type progressive relapsing my heart lifted and I set off to read the medical descriptions…..



A guilty secret

I found myself feeling some unexpected emotions yesterday. Adam had gone back to work and I was once again on my own. It was the oddest thing, but I found myself with a sense of ease. Don’t get me wrong, I missed him, god do I miss him, but I was also at ease. I hadn’t realised that I had actually spent the majority of our four days together, feeling guilty. It’s something I often feel at the weekends, but we have been in a settled routine for so long, that I had grown used to it. Almost every minute that Adam is awake, and I’m sat here at my PC, I’m feeling guilty. Guilty that I haven’t shut my PC down, and that I’m not sat on the settee beside him. I know that he is equally occupied doing whatever it is he does on his laptop, or his second favourite thing, relaxing lain across the settee, browsing on his phone, but the fact he appears content doesn’t change how I feel. If I were to shut this PC down, then I would just be sat in a different location and I would be doing nothing, something that drives me up the wall if I have to do it, for too long. Not to mention, that I would also be feeling bad about not doing what I have a need to, writing, tweeting and keeping up, with what has become my life. For me every day is identical, weekday, weekend or holiday, it always remains the same, it’s part of my way of keeping myself settled, de-stressed and able to live as healthily as I can. My routine, is even more than that, though, what I do here online, is incredibly important to me. It gives my life housebound life purpose, something we all need. Yet, still I feel guilty.

Adam has had to give up so much of what should have been his life, because of me. He has taken over so much more than just the odd chore, he has taken over everything I once did, and on top, has taken over what I can’t do for myself. He deals with my mail, looks after everything to do with my medication, hospital care and much more. Not to mention, a full-time job, or the fact that my being housebound, outside of work, makes him housebound, in so many ways. He might be able to walk down the stair and out the front door, whenever he pleases, but he too feels guilty, guilty about leaving me alone. It doesn’t matter how many times I’ve told him that he shouldn’t feel that way, as he has to have a life, he just stays here, inside, day after day, night after night, with me, the person at the PC. He should have friends, people who he can share the world out there with, people who are so much more than a disabled wife, which I so often feel, is a wife in name only. I have to be the most useless wife anyone could ever have wished for. When he is here, when I can, I feel I should be sat with him, talking about whatever, being true companions, and I’m not even that.

As things stand, our weekdays are all the same. Well, at least, they were. We used to get up at the same time, although our time together was brief, we, at least, spoke a few words and shared a kiss, before he went to work. With my insisted change that I can no longer be up at 7:30 every day, as I need more rest, we no longer see each other in the morning. He has to rise, get ready quietly and leave without a word. Weather permitting, he comes home for 25 minutes each lunchtime, stopping just long enough to put his mind at rest that I’m OK. Failing that, he phones and more than double checks, that I haven’t had some terrible accident, the sort, I have never had. Come evening, after he has been for a walk or stopped by the shops, he returns, for those precious three hours we can spend together before, I once more have to sleep, at 9 pm sharp. From then on, he’s alone, hour after hour, into the night. At weekends, he stays here, a short walk, weather permitting, but other than that, we are here in our home. Me, at my PC, him at his laptop, or doing the housework, cooking, changing the bed and carrying out all the other things that a house needs taking care of, not mention, his care of me. Weekend, or weekday, it’s just those three hours in the evening, it’s the only time we are truly together, and that leaves me guilty.

I guess that’s what chronic illness must do to us all. We land up feeling guilty, just as our partners feel guilty as well and there appears to be no way around it. When we first met and married, we were rarely at home, we didn’t spend our hours sat in silence, separately doing whatever, in the same room. We were together, connected always by hand or body, not isolated, not two people, more one. Having three in a marriage changes everything, as that’s how my health feels. It has pushed its way between us, separating us in almost every way, the only thing it hasn’t done, is to break our love. We can’t go out together, we can’t do anything together, physical contact causes me pain, so even when we are sat beside each other, we’re still apart. Three hours each day, when we watch TV together. Is it any surprise that I feel guilty. It’s me that ill, not him, but he is paying a higher price than I do. I might have all the physical pain, but I know he feels it too, in so many different ways. Chronic illness never affects just one person in a partnership, it’s cruel, destroying “lives”, not just “a” life. No one warns us that there is a future ahead that will be filled with guilt, because of these illnesses no one can do anything about.

On the odd occasion that Adam ventures out for a day without me, he always checks that it’s OK with me first. Why would I ever stop him from going anywhere? But I do understand his question, it’s that thing called guilt again. He’s guilty about wanting to do anything, without me. What he doesn’t get, is that makes my guilt even stronger, I’m guilty because I’ve made him feel that way, even though, I’ve done nothing. You can’t avoid guilt, it creeps up when you’re not looking and suddenly it’s there, once more eating away at you. No matter how well we understand each other, no matter how much we are in love, we both racked with guilt, over what we can’t change and what we should have had.

When Adam goes back to work after a few days off, he always jokes that I will have peace and quiet when he’s gone. That I will be able to hold a party, have fun or any other ridiculous playful notion he can come up with. Our time apart is good for both of us. Adam has a few hours of freedom, yes, I know he worries about me when he’s not here, but he has a taste of normal life, the life we all should have. I, well I too benefit, but not in the way he thinks, my guilt goes away. I’m not holding him back, he’s free of me, my needs and my health. In an odd way, we both have a few hours of freedom as I can sit here, doing what I need to, without the guilt that I’m partially ignoring him, which I’m not. I spend those hours not just busy, but as I said in the first few lines, I spend them missing him. But that love, you can’t escape it, any more than we can escape my health.


Please read my blog from 2 years ago today – 31/12/2013 – Just life

For those that don’t live with an illness that slowly destroys more and more of your body, I know it must be really hard to imagine the truth of our lives and how we even manage to keep going. I know because…..