My Secret Shame

Privately, secretly, I carry a terrible shame. It’s all about the state of my home.

I’ve been sick to the point of incapacity for 2 and a half years now. So it’s been over 2 and a half years since I could do any proper housework. 

Growler is brilliant and he does the best he can.  But there are still jobs that don’t get done.

Clutter is piled up around the house. Stuff put in piles and left in boxes to sort out another day. Another day which never comes.

The garden which I love continues to grow wildly with no-one tending it.  Growler does the lawns and will apply weedkiller when asked.  But the hedges and shrubs grow and grow.  Last year I paid £400 for a firm to spend one day cutting things back to a tidy and manageable level.  Once the warm weather comes most of the work will be undone.

I established some time ago that I am not well enough to tackle the gardening even in small amounts.  It is physically too taxing for me.

The same for housework.  I do the odd thing infrequently but it’s such a tiny amount. Largely things stays the way they are and things gets dirtier.  Clutter mounts up.

I am utterly ashamed.  I am ashamed of the way I live, the way I have become.  Of my failures which are evident in the dust and the grime, in the hedge encroaching the pavement, in the shrubs closing in.

I am so ashamed if I think about it for too long I could weep.  So ashamed I don’t invite people to stay or to visit because they’ll see how bad it is and see my failures.

I wonder if the people who 2 years ago said “If there’s anything I can do to help…” really meant it.  Whether they meant fetching a pint of milk or whether they would get their hands dirty and do the things I really need help with.  But I’m too ashamed to ask and too ashamed to tell them the grotty jobs that need to be done.

Because where I need help is the things which aren’t cosy and aren’t talked about.  I need people to come and clean for a hour, or come and garden for a hour.  To come and sort out clutter and ferry stuff to the charity shop or flog it on ebay for me.

I guess there’s a quiet thought about cleaning and gardening and decluttering. That I have a husband so he can do it.  But there’s only so much one man can do.  He works full time to support us both whilst caring for me.  He takes care of all the bills, washes and cooks, hoovers and looks after the cat, shops and takes out the rubbish. He baths me, he plans for me, he leaves me food and drink, flasks and cooked meals to get me through the day.  He soothes me when I’m pain and when I’m not coping.  He holds me when I’m scared and when my heart is breaking.  He worries about me 24/7.

How can I ask him to do anymore?  How long before he buckles from the load?

It shouldn’t fall to just one person.

So I need help. And the shame stings.

I am ashamed I don’t have friends.  That while I was well I didn’t make friendships which means now I have very few people to call on.  I suppose there’s a chance even if I had they wouldn’t have stuck around until now.  Chronic illness changes friendships I know.  But I will never know because I didn’t give more of myself to friendship when I could.

So it seems that the only people who really want to get stuck in to help are Growler and my mother. My mother who is 65 and has her heart problems so is not up to the task but so desperately wants to make things better for me.  I won’t watch my mother give herself palpatations to save my own health.

I don’t want to blame other people.  But I wish others ‘got it’ a bit more.  I’m not going to ring them up and say “will you come clean my floors for me?”, “will you come wipe the mould off the window frames for me?”, “will you come clean out my drain?”, will you come wipe down the doorframes where the cat rubs his grotty face against?”. 

Maybe they think I’m happy to live like this.  Maybe they’ve forgotten about me.  Maybe they are waiting for me to ask.  Maybe they don’t really want to help.  Maybe I don’t really have anyone to call on.  Or maybe they think that it’s been 2 years so I must have found a way to cope by now (rather than it’s been 2 years and things must be really bad by now).  Maybe they’re just too busy.

It’s almost certainly my fault for staying quiet.  But how do you ask for help with things that are so personal and are your failings?

I know some people say “my house is a tip” but I really mean it when I say mine is dirty.  I know if I was well I could get through most of it in a weekend (maybe two).  If I just had a healthy young substitute.

I can’t afford to pay for a cleaner. I worry what they would think.  I’m also told they will usually only clean once you’ve tidied which isn’t much use to me.

I’m frightened and ashamed to ask Social Services if they can help.  Frightened that their idea of helping will be to offer help with meals and washing when what I want is help with cleaning and chores.

I want to run away.  I want to leave this house and find a clean new one.  To start afresh with less rooms and less garden.  But I worry sick to my stomach that I’d just make the new place as dirty as this one.  That I’d infect it.  I’d have a new shame to face.  Besides the obstacles to moving are not insignificant and would mean getting rid of the clutter and cleaning this place anyway.

I’m seriously considering trying to hire a gardener because the thought of it getting more out of control makes me feel nauseous.  That if I can find someone who’ll come just twice a month maybe I can just spend the money and make sacrifices elsewhere.

As for the clutter and the cleaning … I started a few weeks ago with Growler to do half an hour of ‘chuck or recycle’ each weekend.  We made a small but encouraging dent.  So it could work.  Less stuff would make cleaning a lot easier. For someone.

I’m wondering whether to directly ask my brother for help. Perhaps with ferrying piles of stuff to the charity shop.  He lived with us for two years and never volunteered to help me.  So it’s a long shot and has potential to fail.

Last time I gathered my courage and when a friend voluntereed to help do my filing I was elated that someone was going to help.  And that they were happy to do it.  She never came.   Her own life get too busy.  The filing is still not done a year later.  It was a crushing disappointment.

I considered writing an open letter to everyone I know saying “I need help”.  I need help with decluttering and cleaning and I need people who won’t judge me for letting things get so bad.  But I suspect the one’s who would step up to help would be the ones who have enough on their plates and/or are the most elderly.  Or that I’d be overwhelmed with people wanting to help but none of it would come. 

If they did come I am sure I would feel overhwelmed by the gift and by the highlighting of my own inabilities.  But maybe that’s just something I have to face.

So what to do. What to do.

Seems my options are:

a) Keep ignoring the problem (it will only get worse). Not an option really.

b) Chip away at it little by little and hope I can catch up eventually without giving myself any setbacks

c) Cry out loudly for help and swallow my pride, hide my shame

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12 Responses to “My Secret Shame”


  1. 1 rachelcreative January 28, 2009 at 3:37 pm

    PS: I know the first thing Growler is going to think when he reads this is that it’s all his fault. That he should be doing more so I don’t feel so upset about it.

    If anyone wants to back me up that I need help from more people than just him feel free to say so. Part of the reason it’s difficult to admit how much this stuff pains me is that I don’t want him doing everything and running himself into the ground.

  2. 2 Shelli January 28, 2009 at 6:24 pm

    Oh, my gosh, you are not alone! I think you’ve summed up perfectly what a messy house means to someone with ME/CFS. I also think you’ve touched on something else — the stigma of this disease. My sister just had a stroke, and everyone rushed to her aid. Her husband, her kids, friends all came in and made meals and cleaned her home. Why? Because it was obvious that she couldn’t do it herself. Is it horrifying that I felt a measure of jealousy? But, then, isn’t not asking for help caving in to the stigma and almost admitting that it isn’t a real disease? She hated not being able to do those things for herself, but she didn’t feel guilty or ashamed.

    I’ve chosen to let people come into my house, regardless of its state. I worried what people would think — until I saw the overall compassion. One man who is a stickler about cleanliness in his own home completely brushed aside my apologies when he came to help out with something. He knew and he understood. My kids have friends come over. They step over the clutter on the way upstairs to play Rock Band. They stay for hours. They are happy. I’m OK with that.

    Reach out. You’ll be surprised at the ability people have to love and show compassion. Let them help. Let them feel good. It may just take away some of the awkwardness of chronic illness, because it will give them something to do instead of standing there spouting platitudes. Family, friends, people from church, support groups — start reaching out.

  3. 3 ashysheela January 28, 2009 at 6:37 pm

    Oh Rachel, i read this after emailing you! No wonder you are feeling so low today when this is literally piling up on top of you… there is no perfect solution, and neither you nor Growler can be more super-human than you already are… but there is no shame in it either. I think the regular half hour of deciding what possesions to let go of is a really good idea as it will make it easier to clean without clutter, and will lessen the appearance of total disarray (!) but it will take time… maybe once things are tidier you could arrange a blitzing session or either a one-off paid help or Paul & family members (not your mum!) then at least you can work on keeping it nice rather than starting from a crisis situation.

    Can’t your landlord deal with the garden more? I remember you said he was not a lot of use though…

    We have a weekly 2-hour clean – they came today. I do end up tiring myself tidying up for them to come, especially if J does not do it the night before, like last night… but it does make us tidy up once a week. You only really have to clear the floor areas and a few surfaces… they are understanding and just work around stuff but you get better cleaning if things are clear. It costs £11/hr and we are lucky we can afford it at the moment. It really takes the pressure off as J was really struggling to do it and i was sitting all day lookng at dog hair and mould and feeling miserable. Still it is only a surface clean (they don’t seem to see mould, just do their regular routine!) and grot builds up but now she has the time to do those other jobs without dealing with the hoovering, kitchen and bathroom first, and can choose when to tackle it. I’m just telling you this to say that you are not alone in not coping with it, it has been a major problem for us and still is an issue sometimes despite their help there are still always jobs that bother me and J does not get round to doing, a (more than) full time job and caring resposibilities take their tole and she can’t do everything, nor can growler. He has to have time to relax and have some fun, i am saying this to back you up as i know you know this!

    This is something that has bothered you for a while though and i think you can make it feel better by gradually sorting through things, then asking for/getting help with cleaning may be easier?

    This may seem daft but maybe just choosing one room to keep really clean and tidy between you, that you can relax in might help in the short term? When we moved into this house it all needed decorating etc and it was filthy. We just did the living room first and in the evenings we shut ourselves in and pretended the rest of the house did not exist. It really helped. Then you can work on the rest little at a time.

    Hope you can talk about this and find some solutions… thinking of you xx

  4. 4 ashysheela January 28, 2009 at 6:50 pm

    ps don’t be ashamed you don’t have friends. You DO have friends (hello!). I have only one local friend really. I hardly ever see him, which is just how it is when you can’t get out much or enjoy the things you used to. I had a few more through work when i was well but they have either left the area or have faded away as i have been too ill to “do” the normal friend things with them. They were not prepared to change their model of friendship to fit the new me.

    Maybe you didn’t make friends easily before illness, or didn’t make an effort, but lots of people don’t and maybe you didn’t need them? Maybe the illness has highlighted for you the value of friendship, so when you are able this can change as well. But don’t forget to value the friendships you have made… even if we can’t hack your garden back 😉

  5. 5 rachelcreative January 28, 2009 at 6:57 pm

    Thanks Katie.

    I talked to my mom for over 2 hours on the phone and cried and sniffled a lot. I decided it’s ridiculous to cry and be upset about cleaning b ut there you are.

    It helped to write the post. It helps to hear this from you, your email (and an email from Nina too).

    You both say that it’s going to take time to tidy things and I think I just need to accept that. I am used (in the past) to attacking these things head on but it’s going to take a little more strategic planning.

    My mom has offered to see if she can get someone to come and do some garden tidying and she’ll pay. AND to come with her rubber gloves next time she visits so there will be a battle of wills that day!

    So maybe I could afford a cleaner once or twice a month. Or even seriously consider a social services assessment.

    I’m sure when I finally get to talk to Growler about all of this it will all seem much more doable. As indeed it does with the input of my friends who understand what it’s like.

  6. 6 rachelcreative January 28, 2009 at 8:32 pm

    Thanks Shelli. Sorry to hear abour your sister. Sorry to hear you don’t get the same people rushing to help you. But happy to hear about your friends stepping over the clutter to play Rock Band for hours :o)

  7. 7 Cusp January 28, 2009 at 9:28 pm

    Oh you poor love. I was going to respond much earlier but its taken forever to get the kids to bed tonight and I’m on my own tonight (partner gone to evening class)

    We’re in the same boat and though I can now clean up a bit it’s not how it was. When I was first ill it just got left and it was really hard with the kids etc.

    Like Ashy I reckon the weekly bin/keep/recycle thing is v. good idea (we do similar) and also the idea of concentrating on certain areas or a room. That’s certainly what I did and still do — I only care about the main areas ( and only on those the bits that show — all fur coat and no drawers me !….don’t look behind or under anything). The rest can go hang until one of us has the energy or time to manage it. Same with the garden.

    However I do understand how miserable being in an untidy, grubby house can be. It doesn’t make you feel any better. There have been times when my partner has come home to find me knackered and the found out that though I was already under par I still put away some bits and dragged a hoover round for 5 minutes…and then went to bed for two hours. ‘Why did you do THAT…..you must be mad..’ True but the mess was making me feel even worse so it was gamble….

    What occurs to me is that there may be two possibilties for help that don’t cost (and no we can’t afford paid help either). Two of our local churches (evangelical ones) are very keen on helping in the community…anyone who needs support. You don’t have to be religious or Christian — it’s just part of their mission. They will come and mow lawns, paint , clean etc. We have had a chap come to do our big hedge and in return my son (he wanted to anyway) helped wait tables and clear up at their monthly Saturday coffee morning and we designed some leaflets for them. There are also LETS(http://www.letslinkuk.org/) schemes where you can barter skills etc. Now, you may say well I’m in bed so what can I do but you could barter your paintings/prints/research skills (and many other skills too) for cleaning, cooking, gardening etc.

    If it really is too too much then you maybe need to get a proper Social Services assessment for Home Care support. The other thing is that if you get in touch with your local Volunteer Bureau you may be able to find a volunteer (Properly checked etc) to come and do some stuff for you. There’s also DIAL (http://www.dialuk.info/index.asp) who are v good. Nearest to you seems to be Walsall but the main office will give you more info.

    I think you’re very brave to bring up this subject and the one about friends (or lack of them) — funny how people disappear isn’t it ! I think people just don’t get M.E. They don’t understand how much we cannot do or if we can how much of a struggle everything is….you just do the basics of what you can manage and everything else is left.

    Take heart in the responses above and know you are valued and thought about by people who’ve never even met you in RL

    Take care x

  8. 8 Growler January 29, 2009 at 7:18 am

    You were right about my instant response :-O

    But I am determined to get stuck in to stuff. No need to go into details, but you know what my preoccupation has been since Christmas (and its now out of way, finally).

    We do have friends, you have some very good friends. But asking for help goes against the grain for you because you’ve always been the one to get stuck in yourself.

    We (you!) are already doing stuff and tackling some fairly big issues with the house.

    I won’t buckle.
    I’m “back” now.

    x

  9. 9 ashysheela January 29, 2009 at 1:26 pm

    As cusp says:

    There have been times when my partner has come home to find me knackered and the found out that though I was already under par I still put away some bits and dragged a hoover round for 5 minutes…and then went to bed for two hours. ‘Why did you do THAT…..you must be mad..’ True but the mess was making me feel even worse so it was gamble….

    i do this quite often… so hard to not tackle things when they are staring at you day after day… i just get to the point of not caring about the consequences but i always regret it afterwards and feel a bit daft when challenged later…

    Glad to see how lovely growler’s response is: “he’s back” hurray! Hope things feel more in control soon and today is a better day than yesterday xx

  10. 10 excentric January 30, 2009 at 1:24 pm

    I tell people that they can tell how well I am doing by the state of my apartment. When I’m having a good spell, the clutter isn’t quite so bad, the bed may be made, the dishes may be done. When I’m not having a good spell, too bad. If you can’t deal with it, don’t come over. Most people really don’t care, but it is very hard to accept that things are not as you would like them to be. I have a person who comes two hours a week and does laundry, vacuuming, and shopping. It took me a very long time to get used to having a stranger come in and wash my unders. I would try to ‘help’ as much as I could, and would wind up exhausted for days after. I’ve gotten more comfortable, but it’s still hard when my person quits and the agency sends someone knew. Beating ourselves up comes naturally, it seems, but some things we just cannot control, and being hard on ourselves won’t change that. I’ve found that most people really do like to help when they can. They get to feel good about themselves for doing a good deed, and I get to feel relief that things are not as grotty as they were before help arrived. Acceptance is everything, I think.

  11. 11 1Cat2Many January 31, 2009 at 10:13 pm

    I’ve been sick for 19 months and my house was a tip before I got sick. It’s worse now. I try to do 5 minutes a day. Okay, it’s not much, but it’s something. It makes a difference. And when I leave a room I try to pick up one piece of garbage or clutter on my way out and chuck it. I have a trash bin on every floor of my home. Even if you just pick up a piece of lint off the rug on your way from the bedroom to the bathroom. At least that gives you a greater sense of control. Half this illness seems to be mental, don’t let yourself get depressed or you’ll feel even worse physically.

    Let’s face it, you’re sick. It’s not a choice, it’s a fact. You do what you can, when you can. Consider hiring a student to help out with stuff around the house. They’re cheap and need some work experience. (Seems no one will hire anyone without experience, but how do you get experience?)

  12. 12 Sue February 24, 2009 at 4:49 pm

    I hope you don’t mind me butting in here.

    I have ME and a dirty, cluttered home and it was a relief to read that I’m not the only one. You are right; it is a source of shame.

    I had a woman on Benefits do a bit of cleaning for me before Christmas. She wanted cash in hand so she could buy presents for her children.

    I put up a small card saying I needed a cleaning lady in the local corner shop and I had so many replies I had to turn the phone off.

    I need to do that again because things are completely out of hand now.


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