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hello - Carers UK Forum

hello

Tell us a bit about yourself here.
Hi,

My names Mike - and i'm exhausted...

My wife has a combination of Fibromyalgia and Chronic Fatigue syndrome, which leaves her very immobile. When we go out she's generally in a wheelchair, and she has to "furniture walk" in the house to get around.
She's unable to help with housework, either due to the physical exertion or due to the mind fog she very often gets where her memory is completely shot and she forgets even the most basic routines such as, eating, drinking, getting up

We have 2 kids, one 6 yrs old and the other a baby

The combination of early starts, and late finishes is leaving me totally exhausted and infuriated.
I feel guilty for feeling this way, as I know my wife cannot help it.

Some times, she can appear relatively normal - and can help out a lot more, and I quickly get used to her chipping in and the days being a little easier, but then without warning - she can lapse into a bad patch, and whereas the day before she was fine - the next day she can't get up, or struggles with everything, needing help getting in and out of bed, downstairs etc. I tend to leave food ready prepared for the day when this happens so she doesnt need to do anything in the kitchen.
Sometimes its very easy to mistake the condition M.E for laziness and I suppose my wifes laid back attitude in general doesnt help differentiate between her condition being worse, and just putting things off til later

I've felt very guilty before now, nagging her to do jobs like wash the dishes... and then within a couple of minutes I can see her physically shaking with exhertion to do the job.. and I help her to sit down... I really wish I could read the condition better so I didnt push her too hard when she is genuinely not well enough...

If I could do all the jobs I would.. but with 2 children as well, and working a 9-5 job which means i'm out of the house from 8 til 6, there is just never enough time in the day. Often finishing stuff around the house gone 10pm - and so I never get to just be "me"... is that selfish for me to want that?... I sometimes don't know if it is or not...
I'm afraid to go away for breaks of any kind, as I know my wife cannot really cope without me... she could probably get by with visits from friends, and my 6 yr old helping out.. but thats not fair on him

I feel bad for my kids - as I don't get enough time to play with them as i'm always "working"... so I try to make the weekends special for them if I am able to... but more often than not I am just catching up on the week and don't have the time to give them what they deserve

Maybe I need to let go of the idea that life can be normal, relaxed and enjoyable..... but I'm not sure I could cope at all if I gave up striving to try and make things better some how

I just don't know what to do... sometimes, driving to work, I burst into tears for no reason and have to pull myself together before I get to work.

Having read other posts here, I can see that my situation is not anywhere near as bad as others - I don't know how other people manage in their situations when i'm struggling with just this...
Hi Mike and welcome Image

Totally agree with Audrey, there is nothing 'just this' about what you are doing.

First thing, have you as a carer and your wife been assessed to see what help you qualify for?
This can range from breaks for you to someone coming in to help, a care worker for your wife or even a cleaner, depending, of course, on what is available in your area.
Go to your GP and explain how you are feeling and ask for an OT referral for your wife to see if they can provide equipment to help her cope.
Prioritise. Do more when your wife is able to help and just the necessary when she isn't.
Think of what is important in your life and make time for that, all the rest will wait for tomorrow......or even the next day.
Don't feel guilty, we can all only do what we can do.

Oh, and buy a dishwasher Image

keep in touch.
Hi and welcome, I can only agree with what's already been said by Audrey and Myrtle.
Welcome Mike,
my heart goes out to you and your family - my first thought whilst reading is that you seemed to have reached a point where you are ready to seek help, the people on here can usually point you in the right direction in order to get some.

please post again - its a great release. Mostly I just sit down at the PC and just write...........its not always sent but its a great release.

Love
Linda

Also I find an online diary helps for the reason I said above. Sometimes I go back and read and even I am shocked!
Hello Mike and welcome to this home from home. Blimey- no wonder you're exhausted! I have to say that I can understand both sides, as I suffer with Fibro and know how it affects a person. The problem is, it's not always easy to see that there's anything wrong.
It sounds as if you're doing a great job, but anyone doing the same would come to the time when they just couldn't keep it up.
Help is what is needed. As others have suggested, the next stop is your GP.....and as you've got a baby, does the Health Visitor help in any way?
Again, as has already been said, do call in again and let us know how you are getting along - you see, we care! x
sorry i've been offline for a few days, lifes been rather hectic!

i often find it hard to focus in the evenings, so tend to close off and hide my head in something absorbing.

I'm finding it quite hard talking about the problems I have - sometimes there are good patches where I can find a bit more time to relax - and its in these times that I start wondering why I get so stressed up about it all.
Then theres other times, which are typically very badly timed, where my wifes illness hits her hard, and its like a tonne of bricks... finding baby sitters, sorting out my kids in the morning whilst trying to get out of the door to work on time... and then all the stuff which comes with it once I get home.

I worry about the affect it may have on my children - and am considering looking into what constitutes a "young carer", when my son helps out in the afternoons after school
He's recently been telling us how he keeps getting bullied at school... (he's rather an emotional lad so maybe takes things to heart too much... who knows...)... at the same time it does cross my mind that perhaps some of these things are happening due to his homelife... We're going to speak to the school next week to see what they say about it..

I've gone to see my doctor - they were going to sign me off from work, but I explained that work is my escape.... its normality which keeps me sane... they've advised I contact their councilling group which is based at the surgery, so I can talk through my problems with them...
I've not gotten the nerve to call them yet... i will do it though...

thanks for the replies! it does mean a lot to see that other people can appreciate the difficulties I have... and that i'm not being unreasonable!
Hello Mike,
blimey, I thought my life was difficult enough and I've only got a husband with moderate-severe M.E. to see to. You've got 3 children and a full time job too. Image

Just a job, or one child, or a sick partner'd be enough to tax anyone at times, so please don't call yourself a lightweight.

I assume you're getting all the benefits you can (as a household)? That should be at least DLA medium care, medium mobility, but the forms are a pain. Possibly child tax credit as well.

I also assume you've had an Occupational Therapist (accessed via social services) do a home visit and check what equipment etc might be helpful? Ideally, you'd be home when that happened. Here, that assessment recommended a phone by the bed, lever taps, a pull-down bar by the bed, and all sorts of other stuff.

Even small changes can help - using a perching stool or a fairly tall stool while washing up can make it much easier & less tiring (balance takes energy). The same goes for rocking & using the legs & head as counterbalances when going from lying down, to sitting up, to getting onto your feet.

The relapse-remit nature of M.E. can take several years to settle into a pattern, if it ever does. IMHO the best thing which can be done to improve the length & quality of remissions is for your wife to learn to pace herself. Not in a regimented 5 mins exercise one day, 6 mins the next day etc, but working out how she feels when she's spent 80% of that day's energy and aiming to always keep within that limit (the remaining 20% helps the body stabilise and recover). If you have difficulty working out how much energy she's got, IMHO she needs to get into the habit of telling you when she needs to rest.

As a clue to reading the condition: In my husband's case, I go by colour (redder/paler than usual - check the earlobes), forehead temperature & skin texture (hotter/colder and rougher/damper than usual), eyes (the pupils can get v large when in a lot of pain, and puffy bruised looking eyelids can indicate fatigue), jaw tenseness, and the state of his hands - if they're worse than usual, his feet probably are too. Brainfog and speech also tend to get worse when pain is worse and physical energy is low - so look for that.

BTW you might find it helpful to check some of the forums for M.E., CFS and fibromyalgia etc - useful information about what might work etc.

Guilt, yes; mistakes, yes. Congrats, you're a flawed human being, just like everyone else.
Image

Counselling sounds like a good idea - IME particularly as you don't always feel free to let off steam to a partner about a tough day if they're the cause of it (and can't help it, and anyway, too much stress makes them even worse, making life much worse for both of you).

Employment as respite - I can understand how it might help keep you sane. At least there your work has clearly defined hours, and you get to talk to (relatively) healthy adults. Would it be possible for you to work part time, or would the reduction in income (plus the extra paperwork to change your tax credit status) not be worth it? No need to answer that, just checking that you've considered it as an option.

IMHO, in an ideal world there'd be no such thing as a young carer (hard enough for adults) but seeing as your son maybe already gets the additional stress from having a longterm sick & disabled parent, he might as well get whatever support is out there. As for the bullying - IMHO you really do need to contact the head of the school about this, and keep on until it's sorted out. It's not okay for a 6 year old to be bullied in any way on a regular basis, or even once.

Good luck, and hang on in there.
Hello ship mate, we're in the same boat.

If you are a carer and you are having difficulties, then there is no-one worse off than you.

pm sent.