Last reply 4 days ago
Having a wobble

I’ve had symptoms for the past 8 years but was only officially diagnosed in February. I thought I was handling it ok – wasn’t looking to change anything I’d been doing just maybe not push myself as hard – then Covid-19 hit. Again was ok at the start but now my fatigue is hitting me earlier and earlier in the day and I can just about manage to function. I have a 2yo who is usually in nursery 3 days a week to help with my fatigue and was trying to do lots of different things to entertain her but now not only can I hardly get myself going I feel like I’m really letting her down by not being as patient and fun a mum as I want to be! She’s bored (aren’t we all!) but each day is becoming more of a challenge and I’m getting frustrated at myself not being able to be as active as I would like with her which has made me start to worry about the future and what might happen. Have frightened myself a bit recently having seen a couple of ms articles and possible things that could happen – I know I shouldn’t worry about things I can’t affect but my anxious brain keeps whirring!

I know we each travel a different path and cannot predict what might be and to be honest a lot of this probably comes from exhaustion, i’ll no doubt feel better tomorrow but right now I’m really, really fed up with myself and this feeling of not being able to concentrate on anything properly 😩

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1 week ago

Hello @lilypalooza, I love your name by the way! Well, you’re going through all the normal things and feelings that any newly diagnosed person would go through. BUT, you are suddenly confined to home, and there is a horrible disease lurking on our doorsteps which is instilling fear in the hearts of everyone. That is one motherload for you to have to deal with!!! Are you on your own? Are you making the most of Zoom?

I had a phone consultation with my lovely neuro last week. She is at one of the London hospitals with a big caseload. She told me that every single one of her patients has reported that their MS symptoms (myself included) have been worse over the past wo Corona months hat is what stress and anxiety does for us. So, don’t be too hard on yourself. You are coping really well and get his, your toddler will not remember this time, she’s too young. At the moment, you need to do whatever it takes to get you through. Lots of treats and pampering yourself without feeling guilty. Make a list every day, of five things you want to get done (make it small!). Get your daughter to help you with really important things (in her world!) Like sorting tins of food into really important piles, Separate all the sheets of a toilet roll (and keep them, of course). Get her to watch a fitness DVD to copy. Wear her out so she sleeps! Most of all, keep smiling, keep eating well and rest lots. This horrible time is going to disappear……..x

6 days ago

Hi @vixen! Thank you for your kind words…

No, I’m not on my own my husband is here but working full time still. He’s really good and helps when he can but day time is pretty much off limits. We zoom with friends and family which has been nice although I must admit I’m finding it harder and harder to see them on a screen and not in person but I’m sure everyone feels like that!

Yeah anxiety and stress are rubbish at the best of times but this situation definitely makes it all worse so thank you for putting it back in perspective for me…😊 As I suspected a good night’s sleep and I am feeling more positive today, I think the heat wasn’t helping me either and it’s much fresher today so that’s good!

Oooh separating toilet roll, hadn’t thought of that…although being such a precious commodity I wonder if I should be so reckless 🤭😂 x

5 days ago

I think Covid-19 anxiety is in a whole class of its own. My MS is fortunately stable, I have a calm and ordered (retired) life. Yet just after the start of lockdown when I weighed myself I’d shed four pounds in four days and that weight hasn’t come back. There was no apparent reason for this – I was eating normally, wasn’t feeling ill and never in my life have I lost weight without dieting. It had to be underlying anxiety at a very deep level. So I would guess the same is going on with you and is underpinning the exhaustion that a changed routine brings. While there’s no quick fix for this, I would suggest you treat it as separate from your MS, a different, temporary unwellness. As has been said, to be got through and from which you’ll emerge. I remember talking to my parents about life in wartime Britain and I do feel that some of their experiences resonate. I know we’re not on rations or being bombed, but we too are living with the anxiety of an uncertain world. xxx

4 days ago

It’s OK, we are all wobbling these days.

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