Forum

first real down day

I really hate being negative, but for the first time since dx 2 weeks ago I’m having a really bad day.

I felt greatr yesterday so I got up and had a little potter round the garden for 20 minutes. Then hubby took me out for dinner at our local pub.

Today it feels like ive been run over by a bus. Pins and needles worse in my hands again and general aches and pains all over.

I have no idea whether I should keep going, or keep resting. Been trying to get hold of my ms nurse to no avail.

It seems that I got the dx and discharged from hospital and then just left to my own devices with no information and no support. Been trying so hard to find info for myself, but then feel so rubbish today I could cry.

Sorry to offload, but I know you all understand.

Thanks, Janet x

Don’t apologise Janet. I am not surprised you are down.

Why have you been discharged from hospital following diagnosis? That is ridiculous. You need support and help now, especially as you now have a definite diagnosis.

If I have a lovely busier day than normal I am out for the count for a good 3 days afterwards, believe me.

I can get up and feel like I am having one of the better days and we make plans to do lots of lovely things and boy do I suffer afterwards.

Rest rest rest is all I can advise. And on good days even though you feel like doing lots try and pace yourself.

I was diagnosed 10 years ago and I have had many many days like you are having today.

Enjoy your rest.

((((Hugs))))

Hope you feel better soon.

Shazzie xx

I’m the same as Shazzie, Janet, a productive (by MS standards) day means recharging is required (and generally enforced by your body) for at least a day afterwards. It affects me mentally as well as physically, focus and so forth goes even further out of the window than normal.

Offloading is totally what we’re here for, have at it :slight_smile:

Brain’s not providing me with much in the way of useful things to say here. But one thing to work on is trying to look on the positive side where you can; you had a great day yesterday, so give yourself points for that, and try not to beat yourself up about today.

I guess we need to think of ourselves as batteries - batteries that lose their power quickly, and take a fair old time to recharge. It’s tough to not judge yourself by your pre-MS standards, and then get angry/upset when you fall short of the mark. But it’s something we all need to learn. Along with that being pleased when we manage something, rather than being mad when we don’t, I know I struggle with that, but I’m working on it.

It’s a steep learning curve that you’re on right now, but you’ll get there (•̀ᴗ•́)و ̑̑

Don’t be too hard on yourself during the journey. :slight_smile:

Jackie ✿

Diagnosis just a fortnight ago and you are thinking you should apologise for being pissed off? Oh please!

As if bomb shells of such magnitude were not already a challenge in themselves, you are also contending with the physical limitations of symptoms you would much rather not have.

If anyone has an actual entitlement to feel mardy, it is you. And if you feel that spouting such things allows you to unburden yourself even slightly, then in here, you can have at it!

With regard to getting on with it / being left to your own devices… i personally feel there is merit to this. in some ways i guess it might be a bit harsh, but with the variety of symptoms and severities, and the diversity of personalities of those needing to suffer the MS curse, i would prefer a health authority to NOT apply a cookie cutter guide of support / advice.

For sure there is tremendous value in a counselling service, especially as family and friends may also be left reeling by the diagnosis and are less than supportive.

As far as rest / ploughing on… well i try to persist with the notion that the sense of fatigue, weakness, numbness, pins and needles etc are all just figments of my imagination!

My arm isn’t really feeble, its just that my brain is left to think it is because the neurons are flaking out when delivering accurate feedback. And so i plough on and hey presto, i achieve whatever i had initially thought was too trying to manage.

But of course even fully healthy people get knackered too and so when done, you are done.

For now and forever, i think the best thing you can do when measuring your rest / activity balance, is to learn to listen to yourself and how you are feeling. Test your limits and have courage to stretch them. If as a consequence you feel buggered the next day, try to accept it instead of being made anxious by it.

for example, don’t run a marathon on monday and end up concluding you are having a relapse when you cannae get out of bed on tuesday :slight_smile:

You have a period of significant adjustment to make, but the rules of this life have not changed: everything in moderation; make the most of every opportunity; try to appreciate what you have, instead of lamenting what you have not.

Good luck and keep on trucking! :slight_smile:

2 Likes

hi janet

sorry to hear of your dx. you have got a plethora of excellent advice above but to echo the sentiments on here, you’ve got NO reason to feel bad- you are allowed to moan here without qualification or need to regret doing it. let anyone walk a mile in your shoes then not have a grumble about it.

in the nicest way possible, “welcome to the club” fluffyollie xx

Good post Paolo, I agree. 2 weeks is nowhere near long enough to be surprised by feeling a bit down! Hell, 2 years isn’t long enough. Everyone diagnosed with MS or even suspected of having MS is entitled to feel a bit peeved from time to time that their bodies don’t behave properly or recover from exertion (even just the extra effort of having had a nice day) quickly. And that’s an understatement. After 18 years I have days where I’m completely pi**ed off at MS. And then there are other days where I can feel more philosophical about it and see that some people have it harder than me!

1 Like

Thank you all for talking so much sense :slight_smile:

Im usually so positive (it doesn’t matter if the glass is half empty or half full, there’s always room for more wine) is my regular style

The worst thing is that the business ive dedicated 3 years to building is now just a spectator sport. Its like the world is carrying on without me. Makes me feel totally useless.

Still, im going to buck up, stop with the self pity and think positive again.

I love this forum.

Thank you

Janet xx

[quote=“JanetV”] The worst thing is that the business ive dedicated 3 years to building is now just a spectator sport. Its like the world is carrying on without me. Makes me feel totally useless.

[/quote]

Oh Janet, this got me right in the feels, as the cool kids say these days.

I “work” on a forum, an avatar forum community to be precise, and I’ve given that site my heart and soul since 2007, but now I’m utterly useless. I had to promote other people to my rank to do my job for me because I can’t do it any more. It’s soul destroying, isn’t it, totally heart breaking. You have my full sympathy about your business.

Hi Janet

Yep! it is hard initially to adjust.

I find when my calender has a few things coming up, (sadly mostly various Hospital,Doctor or such like) fill in the previous 2 days as rest days.

OK so on rest days you can slowly catch up with outstanding paperwork, (lots of form filling with the sucking MS) Limit yourself to just the very basic housework, lounge around on a sofa or bed, read, watch tele or even pamper yourself a bit. Do your nails, give yourself a facial or soak your feet, just have a bit of self-indulgent you time. Then the next day when you need to go out, you’re feeling good about yourself ('cos by now you are looking good) take your day gently, try to relax and enjoy yourself. The next day or two will almost need to be total rest days again.

Good luck with it all and be kind to yourself - Mary x