MS Society UK | Forum

Hello from me to you

I am 52, was diagnosed 7 yrs ago with RRMS, but just recently that was changed to SPMS as I now have permanent mobility issues. I find it hard to accept or talk about and I know I am as stubborn as hell. Therefore not making it easy for the people in my life…… if anyone has any tips on dealing with it I would be forever grateful as I really don’t like the person I am becoming and want to find the joy again!! Thanks Sue

Hi Sue,

accepting and talking about our health is pretty tough. For me being as stubborn as hell is mostly a pretty good thing, yet sometimes very costly and damaging. I humbly suggest that you assess each situation twice, firstly going through the normal automatic response; then secondly looking at the issue from the point of view of advising a friend. This approach has helped me to refine my responses and carefully pick the times I dig my heals in. As for finding the joy, I have a library of great memories and I have tuned these to filter out feeling regretful at no longer doing some of those things I am smiling about. You will be amazed by how adaptable you can be.
Wishing you all the best Mick

2 Likes

Hello Sue

MS is the pits. Serious disability is horrible. Knowing this is as good as my health is likely to be sucks.

But to be honest, living it is probably better than living with someone else experiencing the same ill health. I suspect I’d rather be in my shoes than my husbands.

I think that’s the only way I can deal with it. It’s cr@p, but watching someone I love living it, regardless of how much he helps me, it must be hell at times.

Not much more I can add, except that I rather like Micks answer too.

Sue

1 Like

Hi Sue,

I struggle like hell being the neysayer/black cloud/ar$e/glass half empty one, it’s not me. But my OH is the target of my negativity at the moment simply because I barely see anyone else for the reality check thanks to covid. A few years back we used to go to a “pizza and a pint” night once a month with other pwMS some of whom brought their OH. The perspective it brought was invaluable: I could rant with others who knew that I just needed it off my chest, or that something really was a problem. My OH got to see that it wasn’t just being a tw4t, but equally that although it sounded like the end of the world it was just humdrum. Most importantly though he got to hear other people with exactly the same situation and could 1) take solace in the normality of it and 2) nod at people not as far down the road as us and explain how we lightened-up and dealt with it.

That camaraderie is a godsend. Covid has killed it. We’re really struggling now, but the prospect of Virtual Socials via zoom makes me want to stick pins in my eyeballs. I cannot bear the idea of the forced/fake politeness and netiquette. Something will need to give.

Not sure if that helps or not. May trigger some input though.

Keep safe

Glyn

1 Like

There’s nothing wrong with a bit of being stubborn @Sue118
as Mogace says, sometimes that’s what gets you through… I think his idea of processing each situation as though you were advising a friend is an excellent one. Sometimes by removing yourself from the personal aspect, it can help in being more objective about things.

@cymroglyn I can so relate to the horror of socialising over zoom! Or doing anything over zoom rather than f2f, but it is what it is unfortunately. I know what you mean about something will need to give, but try and think of the virtual meet ups as a temporary but necessary evil until f2f is possible again. At least it’s a way of remaining in contact with the people you already know.

Another suggestion is to create a WhatsApp group. That way you’re only communicating by text message and aren’t limited to being in front of a screen at a certain time, but it’s a way of remaining in contact with the others. There’s no obligation to respond if you don’t feel up to it, but you all know you are there for each other if needed.

1 Like

Hello Glyn

I must admit to often being Mrs tw@tface negativity at times too. And it does drive Mr Sssue nuts.

As I noted before, disability is a git. It’s horrible. And it’s awful being reliant on someone else. I think back to the days of my independence. I could just get in my lovely car, drive wherever I liked, see whoever I wanted and behave as well or as badly as I fancied.

Life has changed so much. I can’t even pull my own trousers up never mind leave the house alone. That was copable with when we had friends who could visit, stay with us, cook, talk, drink, just reconnect.

Then poxy Covid hit. That was yet another game changer. I know what you mean about Zoom. I was absolutely never, ever going to be comfortable with video calling. But now we (OH & me) together with my best friend and her husband in Edinburgh (I live on the South coast of England), have a weekly Zoom gin & tonic call. We’ve been doing it since Lockdown #1. Husbands leave after about 45 minutes to make dinner while the two of us have a girlie chat for 20 minutes or so. We are so used to it, it now just feels like we’re meeting for a drink in a bar. She and I also at times have a one to one phone call (there’s some things better spoken about one to one - it doesn’t feel quite right in a social group to discuss problems related to my bowels and bladder!!)

I have another close friend who always uses video calling these days. I hated that at first but I’m used to it now and it feels more natural. We manage to talk about our lives, families, mutual friends, and her work. We used to see each other fairly often, given that we live a couple of hundred miles apart.

It’s not quite like sitting around in each other’s houses talking, cooking, eating, drinking, talking a bit more. Nor is it the same as sitting in a restaurant eating lovely food and drinking while talking and laughing. But it’s better than nothing. I suspect these video calls only work because we know each other very well and have done for many years.

Eventually we’ll be able to meet up again. In the meantime, we maintain our form of face to face meetings in the only way we can.

I suspect maintaining my friendships in this way enables me to sometimes be a bit less negative! Which then makes me a bit nicer to live with. Sometimes we all need friends who are not our husbands / wives / OHs. If we don’t have those friends, can’t manage to cope with video calling and/or don’t get the same support on the phone, there’s always the Forum.

Sue

3 Likes

Thank you @Willowtree in lots of ways it helps not feeling like it is just me - some good advice to try and follow - this week’s challenge is accepting that ordering and using a Wheelchair will means that we can do/see more in the future……. Just need to remember what I would say to a friend about it being an ‘enabler’ rather than a bad thing!! Thanks all x

Thank you all - it is helpful to know I am not alone. It was definitely a contributing factor to my marriage falling apart - and it took me a while to get my head around it being him not me, but it has been hard!

I consider myself lucky as I have met an incredibly lovely man who doesn’t seem phased my the MS and just says we will manage and cope. We are even planning a weekend away in January (although this takes a bit more planning and I am very anxious about it) I am also looking forward to it.

I also am able to still work and my employer has been great at adapting things for me which means that I can stay working. I just really struggle with the reality of not being able bodies to do the things I would do previously…… Your words have all helped - thank you x

1 Like