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Dressing up & role reversal. And yes it's MS!!

Hi all hope everyone is as well as can be. I’m really going through it at the moment relapse after relapse and now a damn cold. My family have always seen me to be well, well I do look well but if only they knew how ill I really felt. Here’s whar I’d like to do to them all 1. Dress them all in clothes 1 to 2 sizes too small for them 2. Put them a pair of rugby socks on and fill them with lead weights 4. Put them a pair of builders boots on 2 sizes too big and fill them with Concrete 5. Put them a corset on 3 sizes too small of course 6. A cork up both passages - you trying doing your business through that 7. Tie elastics round both their wrists & ankles And now that your dressed welcome to a day in my life, please could you make surethe washing & ironings done. The beds are made The bathrooms are clean Vacuumed round Prepare and cook a meal I’d like it ready as soon as I say please and I’ll moan if it’s not Run me here there and everywhere & always be at my beck and call And generally just do everything you expect a mother to do, only this mother is struggling to do it anymore. Anyone else ever feel like this?? Rant over, sorry in advance for the moan but I really have had it.

Sounds like ‘A Day in the Life of PWMS’ - we should make all the neuros/ms Nurses do this - then maybe they would be more understanding.

F

Oh Bambi, sorry to hear about your rant but this is the place to rant and get support.

Can imagine some of the things you’re being dressed up in. For me I’d add :-

Trying to do everything whilst wearing gloves - making it difficult to feel temperature and do buttons, zips etc.

Don’t know how old your children are, but can they help a bit - use bribary if that works.

Watch the penguin programme tonight it will make you smile!! 9pm BBC1.

Jen x

Rant away…I love your descriptive prowess !! And, yes, despite sadly not being a mother, I do feel exactly like that. Not through anyone else but through my own expectations and pressure to do something worthwhile…especially as I have been off work sick for the last 6 months ! ((((())))) from me to you

Oh plus for me, it would be, put a tight plaster on each of your right fingers and toes and then a thick glove and sock on each. Xx

Oh Sue, Sorry you are feeling so fed up and poorly. I understand totally about the lack of understanding from members of your family. I cannot do much of the housework and cooking any more owing to my awful legs but feel that what I am able to do is taken for granted. I do get blamed if certain clothing is not ready to wear a day or two after being put in the wash. Amongst other things! People expect everything to hand as soon as they want it but things don’t work that way any more. When I’m asked if I’m OK they expect me to say ‘yes’ NOT to elucidate on how I really feel! I can’t offer any helpful advice but just empathise as I know how you feel! Teresa xx

Oh I can really relate to these feelings, although I’m lucky not to be having a relapse, every day no matter how much I do work , kids , housework I don’t stop, it’s never enough . My family expect me to be ok , I just lye and say I’m fine. I don’t tell them about th migraines , sleepless nights ect No one understands ms , it’s so hard . Now I’m moaning , but Least everyone here understands each other . Hope x

Hi again all That’s the one thing I love about this forum everyone can relate to what your feeling. Well brought my self to bed at 4.30 as I felt so bad. Felt even worse sending the kids out for take away as I didn’t have the energy or inclination to cook. Thanks all xx

As the kids tell me M is for maid not mom!!!

hiya

firstly ((((hugs))))

5 ish years ago i went on strike! no laundry,ironing,cooking,shopping etc done. 3 days later the complaints started-wheres the milk/bread/food etc. i have no clean trousers etc. i didnt moan or complain-we all sat down to talk and it was an eye opener for us all.

now i cant do any of those things…but theres always coal in for me and food in fridge/cupboards etc. the convo 5 years ago was very worthwhile-it made kids and i realise that we had to work as a team-the rules had to change but we all continued to benefit in someway. when i mentioned this at the time i got several comments re not treating the kids as carers…i will never forget the look on my daughters face when i snapped at her that i would manage…its not all about me (easy trap for those with ms to fall into) but now they are caring understanding young people who choose to help,not just me, but others in general because it makes them feel good as well as the person they have helped…sometimes we are our own worst enemy and are quick to assume/think how others must be feeling. we generally get it wrong! communication is the key-old boring cliche but correct!

ellie x

Hi ellie I tried something simmilar a few yrs ago, told the kids I’d got a full time job (I hadn’t of course) and that they would have to start and help, i left the house every morning at 07.45 and didn’t return until 4.45pm (thank goodness my parents were only 5 mins down the road for me to go to) I left them lists of jobs that needed to be done and it kind of worked for a time, but then it got to the point that I wanted my own home comforts so told them I’d had to quit as I couldn’t manage it. They do help in their own little ways but by no means enough, they areboth kind, considerate loving kids that have never brought me any angst to bear and I think these days that’s a lot to be grateful for. I’ll keep trying to get them to help more but my theory these days is it will still be there tommorow!! Thank you for the hugs xx

hiya

it was far from easy! i also get a cleaner-one hour a week. it doesnt change overnight…its attitudes that need to change-espec our own-and when the rest becomes natural (without the sighs and rolling of eyes etc) then you are onto a more settled life.

i dont give many hugs online-just felt u needed them. i try to avoid guilt-waste of energy! i use it for laughing! the whole life game isnt easy-but we do it cos of the good bits…

enjoy the rest of ur day-there will be something that makes u smile/be grateful for-u just need to keep ur eyes open to see it-albeit blurred! ears open too…

i have just heard that my friend has died. i have cried and now am rembering the good times and that shes no longer suffering…

ellie x

Hi again Ellie Your words are all so true, and Im truly sorry about your friend but like you say she’s no longer suffering. I have a friend that is struggling to beat breast cancer at the moment and yet she still soldiers on regardless and always putting others before herself, we often sit together holding each others hands saying together “we will fight this” always makes us smile :slight_smile: Thinking of you xx

In other words, life is a doddle, eh?

as if!

luv Pollx

If only Poll xx

Oh bambi, you could be me!

I was always the one who did everything in the house, all the phyical stuff and all the banking, homework etc… too and held down a demending job, the mummy as the heart of the home as they say!

I just cant do it all anymore and some days (most days!) I’m like a washed out dish rag and I’m seeing things slipping at home because I’ve had to slow down, its very, very hard.

Oh and I’ve to start intermitent self catheretising as well as my daily copaxone injections :frowning:

…my rant over too

Jools

X

Jools I think probably most of us with MS could be me at some point or another, i got so upset today, couldn’t stop crying all because I was so frustrated at not been able to do a simple task (someone had laid the juice down in the fridge without tightening the lid it was everywhere) and when I eventually did manage I was absolutley washed out. Rant all you want were all here for the same thing - to support each other Sue xx

We spead ourselves too thin and it’s very tough, then theres " the straw that breaks the camels back" like your juice, tears and rants all help!

Jools

X