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hello friends

just wonder if any of you understand the way i feel this evening.

husband and sons got in from work just before i got in from sainsburys.

i just couldn’t believe how irritated they were.

it must be me that is irritating them but i definitely don’t do it on purpose.

it is the 13 year anniversary of my lovely mum’s death so yea i’m feeling more emotional than usual.

but it’s an awful feeling of loneliness in this wonky body.

i don’t want a fuss just a smile, a kind word or a pat on the head,

i want acknowledging!!

do i make sense?

don’t know where i’d be without you lot to unload to occasionally.

​i never realised before that it is a different place to live - my broken body.

it’s empty and lonely and i don’t like it.

sorry for unloading my pitiful pity party.

tomorrows another day and i refuse to stay down but for now that’s where i am.

carole x

1 Like

Aww Carole,

Thinking of you, lot of hugs.

I’ve just been through 2 anniversaries (mum’s just before Xmas & Dads just after New Year), not easy even after all these years, worse when your feeling cra* anyway with this god awful disease.

Just for you a smile and consider your head patted off me.

Cherry x

Hi Carole,

That’s not like you!

Why have you jumped to the conclusion it must be you that’s irritating them? Is it possible they’ve just had a bad day/week at work for reasons of their own - quite unconnected with you? Or just ordinary end-of-week tiredness? I think it’s a mistake to assume other people’s moods are always to do with us. It’s almost a kind of inverted arrogance sometimes seen with depression - not taking credit for good things, but instead thinking we are somehow responsible for everything bad that happens, including other people’s negative thoughts! Maybe their favourite sports team isn’t doing very well or something? Do you actually know it’s you?

Were they upset because they thought you shouldn’t have been at Sainsbury’s, and should have had their dinner on the table or something? Or is that complete inference on your part, and no evidence to support it at all?

Is there any chance they are also missing your mum? I’m not sure whether your boys are old enough to really remember her passing, but your husband must be. Did they get on well? If so, he might be feeling a bit sad about it too.

Anyway, other people are responsible for their own feelings and actions. You can’t make everyone else always happy - it’s unrealistic. Do you expect them always to make you happy? I’m assuming not. Then you can’t expect it to work the other way, either. Not everything they think or feel is always caused by you.

Tina

x

1 Like

hi there carole- so sorry that you’re having a rotten time, and don’t feel bad about voicing it here- that’s what we all come here for- sometimes speak, sometimes advise, sometimes just listen.

you’ve had a horrible time with MS, and its hateful effects. its never nice to remember some dates.

i am sure that your post encouraged a lot of thought by those who have read it. it certainly has with me. i think you are allowed to be p*ssed off and voice it, and im sure your family want that too.

in the meantime as you say, you’re sad now but it will get better with time, energy and a little work.

with all my best wishes and nice hugs, fluffs xx

Sorry Carole, just re-read your post, can’t work out if you wanted a pat on the head or not (been a long night, I’ ve been at work, more brain dead than usuall) apologies if you didn’t, but have even more hugs hun. C x

Hi carole

Sounds like you are having a bit of a blip…who can blame you. I seem to be having them more and more.

There are times when most people feel hypersensitive. Sadly for you, it’s your turn.

Yah need to get vocal with them men of yours carole. Let em know what’s on your mind, then yah can all share the love.

xx

thanks for reading my winge

tina - i was already asking myself if it WAS me they were irritated with.

the boys remember mum (eldest was 4 yrs, youngest was 2 yrs). hubby adored my mum. i don’t think they were aware that it was her anniversary though because i didnt until i saw a beautiful photo that my sister had put on facebook.

cherrylips - thanks for the smile and the pat on the head.

blossom and fluffy ollie - thank you for acknowledging that i was feeling low.

i think that what i was trying to explain is that you know how we inhabit these bodies until we die? well suddenly this thing that i inhabit seemed strange and alien, not at all homely. it seemed such an empty, lonely place to be.

those thoughts are so out of character because i was always so comfortable in my skin

selfish and self obsessed thoughts but yesterday they made me so sad.

as ollie says - i will have to work on it.

sooooo the show must go on, i’ll take my tecfidera then vomit violently (remember that punk band?), have a shower and potter around.

love you all so much

carole xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Carol have you tried anti sickness meds or been given any advice. Ive got ompeozole handy and other things in case this happens im on first day of high dose. Starting this new med after feeling ok on copaxone is a bit of a shock to the system I have felt off all week think starting a new med makes us think more about the ms and ive been quite down and tired. I joined a uk tech page and its brilliant only joined fb for this and they are so supportive and give really good advice. When I started flushing and therefore panicking within seconds there was a helpful reply. I cam pm you the advice I was given or see you on fb. Hope you get it under control because I think starting a new med brings its own issues sending a hug xx

thank you zoe

i’ll phone my gp and ask for a precription.

carole x

Oh Carole.

If course you feel sad on the anniversary of your mum’s passing. Your family should understand how you feel and help you through it. If only by a smile and a hug. I’ll send you one anyway ((((hugs)))).

And yes you do make sense!!

Have a ME day and get that Kindle out and snuggle up all cosy or the day.

Take care sweets.

Shazzie xx

Aww Carole, I’m so sorry to read your post, I hope you start feeling a bit brighter soon. I don’t have any special words for you but just wanted to send you some (((((((((((hugs)))))))))))) & say that I understand how you’re feeling xx I lost my dear Dad ten years ago, it would have been his birthday this month. It’s a very sad time, but things will get better.

Rosina x

thank you all so very much

feel a bit more myself now.

took my tecfidera this morning (such bravery) and this time i wasn’t sick.

so violent and the vomits are disbanding after a short but traumatic career.

i might even go out to the pub tonight!

carole x

Hello Carol

Of course us lot know much better how you feel, than anyone else ever will. To be fair we can’t expect them to know exactly how it feels to be shackled to a body that won’t work like it used to. We can’t warm up quickly when it’s freezing, or cool down when everyone else is basking in summer weather, or get to the loo in a rush, only to sit there for ages waiting for something to appear.

Yes, there are a zillion things we could complain about. And yes, we don’t want sympathy, we want empathy, that’s all and perhaps a patient listener to let us get summat off our chests, without judgement.

Next month will be the 14th anniversary of us losing my mum. Plus it will be the first anniversary of us losing my Hubby’s sister. These times are bound to leave us feeling sad and reflective.

Having said all that, I think January and Feb are hateful months…but jan is all but gone, eh?

Look after yourself hubby.

Pollyxxx

thanks polly

empathy is what we need. sympathy can wait for my funeral!

that’s why you ms friends are so important.

i’m feeling much better today, i took my morning tecfidera and didnt even feel nauseous.

(i just had to google nauseous to check the spelling - that’s another thing i can’t do any more).

now i’m planning to call at my favourite restaurant for a take away.

got to have something to eat that i enjoy!

so that’s tonights meal sorted

carole x