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Hello - just wanting to talk to somebody

Hello,

I have only just registered today. My husband has SPMS and I've had a lot of health problems. Because of this we've become totally isolated. I haven't talked to anyone other than a health professional or cashier in ten years and I need to do something about this as it will only ever get harder to make contact with anyone otherwise.

I know our situation sounds insane, but that's one of the obstacles to making any contact.

To be in such a situation must mean we are weird or dangerous. We're not. We are unemployed, ill and disabled, but that feels just as shameful and repellant as 'weird or dangerous'.

I'm struggling just to write this for fear of judgement...and I'm not even sure if I'll end up posting it.

OK, I'm going to post it!

Must run....Tesco delivery...a friendly face smiley

Anonymous

Hi Seren, well done for posting. I'm similar to you in that I look after my wife who has SPMS and over the past few years our world has got smaller and smaller. We have a couple of freinds who see us once or twice a year, but rarely get out the house. Like you we don't feel weird or dangerous, we just struggle to get out and even when we do get out we struggle to do 'normal' things in 'normal' places - I guess you're very similar to this?  We just keep pushing on though as we don't really have much choice - it's either work really hard to get out when we can or become totally housebound which is maybe not that healthy mentally.

Do you have a local MS centre that run coffee mornings? That might be an option to meet people in a similar boat to you. We live in Wiltshire and was recently put in touch with Wiltshire carers who carried out an assessment that got the council to pay for 4 hours of respite for me ... effectively a lady comes each Thursday to sit with my wife for 4 hours whilst I have some time to myself (I catch up on sleep!!). Your council may have something siilar so it is worth looking into.

Good luck.

Hello,

Thank you so much for posting!

I do identify with your situation. We didn't go out at all for three months because of lockdown. Because of the lack of movement my husband's mobility has suffered. Venturing out is made all the harder due to the removal of seating in public places (my husband use a crutch/crutches depending on the way the MS wind blows) and the closure of many toilets.

We've been out for coffee a few times. On one occasion my husband stayed in the coffee shop and I went off to buy some jeans; a little moment of normality. It's just a shame that new jeans were necessary. I couldn't shoe-horn my post-lockdown legs into a pair I'd bought at the tail-end of February (I hadn't even over-eaten, just under-exercised). Prior to that I'd not been clothes shopping for over three years: typical!

I have found details of a local coffee morning on this site, but it's not running currently because of the pandemic. I don't think my husband would go. I can't see him seeing himself as a 'coffee morning' person. In the past, neither of us ever wanted to get to know anyone via our illness or disability. We didn't want pathology to be the connecting factor.

'Funny what a decade can do for perspective, pride and prejudice!

I'll definitely look into going myself as soon as restrictions are lifted.

Once again, thank you so much for responding. I look forward to chatting again some time.

Take care.

Hi Seren and Anon, I`ve had Spinal PPMS for 22 years and hubby has been my main carer. I have 2 other carers coming in to do my personal care and take me out.

My hubby is very much a home bird nowadays. Before I lost all mobility, we used to go on holiday together.................................. I did holiday with carers, but have had my budget cut drastically. Cant afford them now.

If I didnt sort out my own interests etc and just did as my hubby does, my world would be so tiny too.

I did go to 3 clubs a week, plus shopping trips with carer. The clubs have closed due to covid.

Now I get 1 outing a week and socialise on here and fb.

I dont know why you think of yourselves as weird or dangerous???? I`m sure you`re not.

Boudsx

Hi Bouds,

Great to hear from you!

First off, I don't think I've communicated my point very well. Let me have another go.

I know we're not weird or dangerous smiley, but because we are so 'off-grid', I'm sure people would be very suspicious. I imagine a person to think "Umm, these people have no friends. That must be because they are thoroughly unlikeable. Also, we're not on social media (well, we have just opened Twitter accounts). We don't know anyone to connect to, so the prospect feels a little like virtual salt-wound rubbing. Also, although I love the concept of social media and FB, both of us have issues with Zuckerberg and the likes and the impact of social media on society, psychology and politics etc... I am 100% sure that many people would find that weird and, waaaaay too heavy.

Being isolated for 10 years is definitely statistically abnormal and I really want to change that.

We've spent one night away from home since we've been together and had finally planned to go on honeymoon (10 years after our wedding) this June. Then - a pandemic and global shut-down. Of all the things we thought could have scuppered our plans, we'd failed to consider a zoonotic virus!

Anyway, we are both still alive and uninfected; which I consider 'a win'. We've been out lately - 'win' and I'm talking to people here - 'win'. Win, win, win!

You sound like quite the social butterfly. I will definitely look into the MS coffee mornings. I hope they start again soon. I've also joined a platform called 'meetup'. There is a book club nearby which I'd eyed-up longingly. Covid meant it went online, which makes it a possibility for me. Finding the time to read a book is now the main barrier. My husband suggested joining Audible.com, which means I could listen to the books when preparing food and washing-up etc., so the ducks are lining-up.

One final thing before I go - am I allowed to post in the other forums? As I am a carer and not someone with MS, I'm not sure. Although, as you've posted here, I'm hopeful.

Thank you ...and I hope I haven't scared you off smiley.

 

Hi Seren,

Your situation doesn't sound insane at all. It's a condition that is all too familiar to a great many people who read and contribute to this forum. 

Our MS isn't the result of breaking the rules, nor is it because we took too many risks, but apart from the vast range of peculiar symptoms (and some not so peculiar), and the ignorance of layman and specialists alike, we find ourselves isolated and lonely.

Joining this forum is one of the best things you could have done though. Here you'll find a great many people who, not only know what you're going through, but will also have the empathy to understand what your problems really mean to you on a day to day basis.

You don't have to keep writing in if you don't want to. I lurked in the background for many months before I felt up to joining in the conversations, but when I did I was surprised at how much less isolated I felt. I even made some friends, one of which has become a very good friend.

You are definitely allowed to contribute to other parts of the forum. Everyday Living, especially, is a hotbed of opinions, humour and comments; and you are very welcome.

Regards,

Anthony

 

Hello Anthony,

So great to hear from you - and to hear that you and others understand. Empathy is something my husband both feel is missing when we deal with many health professionals. Although, it's disappointing not to connect we don't feel let down. It's inevitable that they can't identify: you'll never know what a strawberry tastes like just from reading a description (if you'll pardon my clumsy, left-field analogy).

It's great to know I can post elsewhere. I wasn't worried about posting again. My concern was that I may 'over post'.

Thank you for taking the time to write.

 

Take care,

Seren 

I often over post!...on all forums.

Boudsx