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So hard to keep up the pretence

It is days like today that I find so hard, I try to keep up a brave face and not let on how rotten I feel to my family because I don't want to worry them, but I am so tired! I have pain in my ribs (MS hug?) twichy face, wobbly eyes and could just fall asleep where I am sitting.

Just feel off kilter sad

Hi Sparky

I feel exhausted today also so have hardly done a thing.

My son has been playing on the nintendo wii for ages as i have no energy to play with him.  I usually restrict the time i let him play on it but today i have decided to let him carry on.

I have been sat on the sofa for ages doing absolutely nothing.  I  could just go to bed!

I have been feeling guilty but then decided i was being silly so instead i have ordered a takeaway to be delivered for tea and hopefully tomorrow will be a better day.

sending (((hugs))).  Be kind to yourself and just rest - your body is telling you thats what you need.

Teresa. xsleeping

Oh no sparky! I'm sorry you're feeling off kilter. Somedays it's just harder to ignore everything isn't it.

I slept for 3 hours when I got home from work yesterday slept again at bedtime 8 hours. Slept today for 2 hours and if I lay down and shut my eyes right now I could probably sleep again. 

I was someone who use to travel 4 hours a day whilst balancing work and studying and survive on 4-5 hours sleep (granted I looked and felt crap for it). I could never do that now (I'm only 29). The few hours missed sleep I've had during the week and exercise I did thursday have really taken it's toll. I haven't done anything much today. I hate being unproductive.

Hiding things from family is very difficult- I only told mine a month ago. I guess it's easier as it don't live with my family so they don't see how difficult some days are. Saying that I don't tell my partner everything either - I donm't want to become someone who constantly focuses on being ill and complaining about what they can't do if I can help it. My partner lost his mother and brother last september so I try not to overload him with my problems unless I really don't feel good and I guess I feel like at least I have all my family, I have him, I have this forum. He has no one all his family are gone.

It still doesn't make it any easier, or my symptoms any less distressing though. It's great we have this forum - it's the one place you don't feel bad about complaining, being upset or asking about the strangest symptoms.

I hope you feel better soon Sparky. Try not to over do it. Giving you a virtual (hug)

Reemz

X

Hi sparky,

On days like that I would be inclined to mention to your family that you're not feeling up to much so please excuse my miserable face. If you don't tell them you're feeling 'a bit off' they  may think that they have upset you. Turn the situation around, if your family were extra quiet you would worry wouldn't you?

Take care and hope you feel better soon.

Janet

x

Thanks for your replies

I just don't want them to worry or get frustrated with me because I feel ill again. I get sick of it myself so can imagine how they feel. And its not fair on my boys (12 and 4) why shouldn't they have a normal mum who can do things with them without moaning that its tired her out.

Teresa, guilty is exactly how I feel.

My sons don't know any of what has been going on because I think they are too young to understand, so all they can see is a mum who is being 'lazy'.

Hi all,

If you google the Spoon theory to explain MS it gives a lovely anecdote to share with your family - it's a great way of explaining how MS feels when so many of the symptoms are 'invisible'.

Along with the great tips above, I've found other things helpful: Stock up on some of those Meal for £10 deals and pop them in the freezer. So great for when you don't feel like cooking but still want a good meal on the table! Also, when I'm really tired and can't seem to get up from the sofa, I try to keep a pile of paperwork next to me that I can go through. This makes me feel I am 'doing something', even if it's just reading through it. And cut down on ironing by hanging clothes up straight away (or bribe a small child!) so they hardly wrinkle. I've cut down my ironing massively by doing this. Finally, when it can just be really hard to catch up with friends, I invite one or two over, explain that I am tired/achey/grumpy moo, but I would still love to see them. That way I don't feel pressured into getting ready to go out, I get to catch up with them, they don't mind me not sitting bolt upright and you're still getting on with life. It's such a boost to have friends over for an hour or so and they appreciate that you want to see them too.

I might be stating the bleeding obvious, but it's amazing how much I have had to change so many factors of my life over the last year and just small changes can make a huge difference. Then, when you have a good day you can just go bonkers!

Hope this helps..

Choochyx

p.s. one last thing. I have a 12 year old too and the GUILT I feel at not being able to do so much with him is crazy!! Sometimes when I am exhausted, I let him have a friend stay over on a friday or saturday (sometimes a different friend each night if I'm really tired), make sure there's pizza, treats, etc and they just get on with entertaining themselves. Plus they think you are a fab mum! This means I get to lol about without worrrying about my son. Plus, they get lots of 'return' visit to their friends homes.

Also, I have hooked up with other rugby/football/cricket mums to share out the lifts - again my son doesn't see this as part of my MS, just being a canny mum...

Finally, if I have forgotten milk or something from the shops (cog fog!), a 50p bribe works wonders and my son is off on his bike before I can close my purse. Kids, eh?!

One other thing - kids, especially at that age don't need you quite as much. All they really want is for you to be 'there', to offload to and chat with. I try my best to keep up to date with all the goings-on in his life, his friends names (even if I have to write them down in my Blackberry, lol), what tests he's got in school, homework etc. If they realise you are interested, i think that can count for more than blowing all your energy on a day out!

Choochyx