A never ending circle

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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…..

23 thoughts on “A never ending circle”

  1. Yes the guilt all round is as you have expressed.
    I m glad you had a lovely carer who sounds like she enjoyed caring for you, exactly how it should be and I hope that carries on as is a good standard.
    As for guilt it is something I never wanted or expected packaged with ms or any other chronic illness.
    Cherish your memories.
    X Jane

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    • I doubt anyone expects to find themselves both chronically ill and guilty about a million different things. Yet it seems to be another one of those things that no one tells you about, but we have to deal with. Like so much, it is so unfair 😌

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  2. A very honest blog of your feelings of guilt which is so true when one partner needs help in day to day needs. I know my hubby feels guilty. Because of ill health is unable to help with any daily chores, not housebound, but suffers chronic pain amongst other health issues, so reading your post today has pulled me up to be more careful that I don’t add the feelings of unnessesary guilt, to make sure I have a happy face carrying out tasks! ((HUGS)) 😄

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  3. So often your posts hit so close to home. The guilt can be palpable.
    I’m more independent than I was just last year, I’ve been going through a type of remission. But my husband still feels guilty when he’s away from me. He leaves me breakfast each morning, and my lunch is ready, I just need to pop it in the microwave. … something that was too much for me last year. He still has a hard time not being here.
    He hasn’t been alone in years. He has gone out maybe once without me in the past two years.
    I’m not house bound now, but I can’t go out without him.
    There’s huge guilt there.
    So much guilt.
    I cried when I read your post.
    My heart goes out to you.

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    • And mine to you, as you know exactly what I was talking about. It shouldn’t be this way, but even Adam after reading my post said he understood it completely, so I was right, I know how he feels. I don’t know how to change it and believe me, I wish I did. It is trap that none of with a heart can escape, so on that level, well it’s a good thing, but all of us can do without it. (((Hugs)))

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      • Overtime reading your blog you have delved deeply where others wouldn’t go !
        Yes it is an unimaginable situation but talking on here helps.
        I hope people understood what is behind each day.
        This is again why your blog is important as we can contribute.
        Hopefully one day someone uses this as a tool to understand at least. X

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  4. That old guilt, always lurking around. I experience it just from my chronic pain and PTSD. My poor husband and adult daughter are forever trying to help me by finding things I want to do, or that they think I would enjoy. I feel terrible that their efforts of love can’t happen. I know they suffer from feelings of inadequacy. We talk about this. I tell them I really am doing the best I can, I thank them, and tell them how much I appreciate them. But their sadness is obvious. This brings out my own distress. We are working on letting this go. There is nothing productive or positive in this cycle.
    I wish for you and your husband to find the joys in togetherness that aren’t entwined in assisting. It’s so draining.
    XX

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    • The level of guilt seems to decrease as times goes on, but it does still niggle away at us, no matter how we work on letting it go. In some ways, it’s a good thing, as it shows we love each other, but on the other, it’s a real pain in the butt. 😊

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  5. As I read your post and the comments, my main thought was for everyone to get counseling. It has helped me so much in my life and helped my husband too. He has been sick since he was 36 and I’ve been sick since I was 45. We are both in our late sixties now. I couldn’t have made it through these years without someone (a psychologist) to help me.

    It is true we all get these sad feelings of guilt and feeling useless; but do you know these feelings and thoughts are detrimental and do great damage? I learned through therapy how to think differently so I could enjoy my life, such as it is. Even now, as I look after my 89 year-old mother, I do what I have learned – I look at whatever is positive and good in it. We have three sick people in this apartment, but we are managing the best we can. Bad feelings are a terrible waste of time. As soon as you have a negative thought, replace it with a good one and ask God to help you do it. You are such an important person. Do you know that?

    You say your life with your husband isn’t a lifetime at all. You are so wrong. Who do we really love when we marry? The person inside – and you are still there and will be till the end. Your mind and heart are intact and are what your dear husband loves. You say you don’t talk with him about the guilt. You should! You should talk together about all your feelings. Not talking just pushes down the feelings and they have nowhere to go so they stay in your head.

    You may think this comment is unkind. I hope not, I don’t mean to be. You are being swallowed by despair. It hurts me to see that.

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    • I don’t believe that our guilt is of a level that needs intervention. A small amount of guilt is normal, it’s even healthy. The guilt that I feel is background, but it’s there, just as are a thousand other feelings that live in all of us. Just because I am happy and smiling, doesn’t mean I don’t still feel guilty, one emotion doesn’t preclude all others, if it did, then would be the time to ask for help.

      When we married like most I was at least myself living to a ripe old age, Adam is 17 years younger than me, so growing old together, well wasn’t on the cards. Now if I am lucky, I have another 6 years, when I should have been looking at another thirty years, our lifetime together can never happen now. There is so little time and I for one, don’t want to spend it talking about the small things, when the big things are far more important, especially as my mind retreats daily. Trust me, I am a million miles from despair, this post was about a fact, that guilt is part of an illness like mine, and it can’t be avoided. It should be recognised and embraced, as every human emotion should be 🙂

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  6. I MISSED YOU!!!. TODAY’S POST WAS SAD (STILL CRYING).I UNDERSTAND YOUR PROBLEM WITH THE SHOWER.I DON’T LIKE TO SHOWER BECAUSE I DON’T WANT TO LOOK OR TOUCH MYSELF.I DON’T RECOGNIZE MYSELF. I DEFINATELY WOULD NOT LET MY “HUSBAND/DAUGHTER BATHE ME…I UNDERSTAND ADAM TOO.HE KNOWS HIS TIME WITH YOU HAS BEEN TAKEN AWAY. HE WANTS TO SPEND EVERY PRECIOUS MOMENT WITH YOU.THAT, PAMELA IS PRICELESS. I ENVY YOU. YOU HAVE REAL LOVE.!!!. FEW HAVE THAT……… BOTH OF YOU SHOULD TURN “GUILT:” INTO GRATITUDE. YOU ARE SO LUCKY TO HAVE FOUND EACH OTHER. FEW HAVE REAL LOVE. THE REST OF US…..ARE ALONE.

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  8. I understand all the things you are feeling. I too have a care-giver but I’m so grateful I have her. You should be so happy that you have a husband who loves you no matter what may come and that stays by your side. Mine just couldn’t, wouldn’t and didn’t. As I read your post I thought that you are very blessed. Yes, it sucks to suffer from a debilitating disease and it’s difficult to see what’s good in our lives while we wither away but good there is.

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    • I know that I am incredibly lucky having a husband who cares for me so deeply, and I honesty couldn’t survive without him. After I wrote this post we did talk about the guilt we both feel, constantly and came to the conclusion, it is actually impossible to not feel it. If you care for someone and can’t give them what you believe they need, you feel guilty, it’s just the way our lives are now, but neither of us let it dominate us, we just move on and on trying to keep it where it belongs.

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  9. HI, PAMELA; I’M SITTING HERE ALONE AND EVEN THOUGH IT WOULD HURT, I’D GIVE A KING’S RANSOM FOR A REAL HUG FROM A MAN I LOVE, WHO LOVES ME BACK. SADLY, HE HAS CHOSEN TO BE WITH SOMEONE ELSE.SHE IS NOT WHAT HE NEEDS, BUT SHE DOES HAVE WHAT I DON’T. LIFE CAN BE HARD BUT YOU KNOW THAT BETTER THAN ME…..STILL FIGHTING……..NEVI

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