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Socialising is a pain....blog

I have been writing my journey with MS, and one of blogs is about sociailising. It is a pain. I wrote it and sent it to my family as they just dont get it.

Now they seem to be understanding a bit more, and visit ME more.

Thought i would share.

Oh crazy chick I can so relate to many things in your posts. I’m only relatively recently diagnosed, but still I get you - in lots of ways. My sister unfortunately dropped down dead, well near enough, didn’t make it alive in the ambulance to the hospital. As it was a sudden death there was a post mortom. Then, that was inconclusive- so an inquest. It felt like forever. At this point in time the ms hadn’t officially surfaced - but as you said in your one post, I was beginning to think it couldn’t be right to feel just so knackered all the time, guess it wasn’t. My sister had suffered from a severe mental illness so I always had this feeling she would die before me - I mean you can’t jump out of windows and sorts and survive every time - can you? But she died from viral myocardialist. Basically she had suffered from a bad flu, the flu virus had then attacked her heart - and caused a severe arrhythmia (or however you spell it). It was the same day Whitney Houston died - at least I’ll always be able to answer that question in a quiz. It sounds very cold hearted, but locally an inquest which had been going on for two years had been concluded. I’d seen on the local tv about a pregnant lady that had died in an arson attack and had thought how sad it was and awful for the parents, but having gone through the inquest process myself which lasted six months, I found myself reflecting on their situation and thinking until you actually go through something yourself I don’t think you ever comprehend just HOW bad it is, and wondering how her parents ever managed to get through the days - but the reality is you do - as you have no choice. Reading your couple of blogs is a reminder that we are not alone in our journey out there with ms - and life - it’s I think good to talk, as it were. I guess I’ve rambled on about lots of things here, hope you don’t mind. By the way, if you don’t mind me saying, I thought the photo of you as a child showed a smile that would light up a room as it were. I’ll try and get more sleep now to get through work tomorrow. I so got that as well.

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Hi crazy chick

Before my diagnosis Imber following your posts which led to your own diagnosis. Like yours mine was not straight forward and resulted in ppms.

I can relate to alot of what you say and this weekend has thrown me challenges left right and centre.

When you talk about looking in the mirror I get it…I often feel !Ike I’m looking down on someone else’s life where I’m unable to challenge, agree or disagree with what is been said.

I’m finding that some people around me who say they get how my condition affects me they really have no clue. If they had would they really keep repeating the same things and brow beating me in the hope I give them a response that they want.

And yes being around people is so challenging for me. I struggle to keep track of conversations and my input cn be quite random. I don’t feel like me…the me that could stand up for myself and say what I thought. I still attempt to express myself but end up tearful and frustrated.

The aftermath of the weekend has left me jittery and I could cry at any minute.

I feel I’m going to have to be more selective of who I spend my time with. One person in particular I feel gets a kick out of bullying and cornering me with non stop probing and questions leaving me frazzled and angry.

I think my loneliness comes from a lack of having even just one person that gets me or how ms is affecting me. I have people around me ,mostly they have good intentions but I need something more. The nearest to that is posting on here to people who may have more if an understanding. I hope you find what works for you and continue with your blogs if they help.

Take care and thanks for sharing.

Christine

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two wonderful posts thank you for sharing, chatterbox and christine.

I cant imagine what you went through with your sister chatterbox.

Sorry you had such a horrible weekend christine, it helps to write these things down, it puts our life into perspective.

No one knows what its like to have MS. Unless they have it, and then everyone has it differently.

Its a really cruel disease as it makes you feel great one minute and feel hopefully, and do more things, then crash left in a daze in pain feeling like you have been run over by a giant truck.

thank you both for taking the time to read my musings. xx

Thank you for posting. My now-separated husband has ms and he hates socialising to the nth degree. At first socialisimg was good, now because my relatives don’t understand why he behaves the way he does…we both are persona non-grata. Now, even tho we are separated and irony of all ironies, I also have ms…I am still persona-non grata when parties are being held. They all ok with me to my face and meet up on a one to one basis but not in a group. Today, I have been upset by it but I have come to the conclusion that they just don’t understand me as I am now. Thank you again.

Well Anon, these were your old friends. I’d say, you are you and get out there and make NEW ones! They will know you as you and how you are now. I know it a bind to get out sometime. Try Meet up or your local MS Society

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Dear redivine

Thank you for your message. I wish it was that easy…These are relatives that we are talking about rather than friends.

I am newly diagnosed too…these same people also ask how i am etc but do like to stop at the social side of it…its like i have a contagious disease…!

That was one question I did get asked when I last saw the extended family.

As the saying goes…you can choose you friends but not family.

I have posted a new thread asking if there is any body in my area that would like to meet up. Yes the harrow group is there, but as i am currently working, the timings are not so conducive to me.

Mx

Hello CC.

What can I say? I can identify with all those points you make in your blog.

My electric wheelchairs have given me the freedom to get out and about. I have friends with similar disabilities. We gather weekly at a local physio session and we have frequent visits to a really good pub for lunches.

I take regular trips up north ion the train and have flown abroad to see friends. The planning can be a bit much but I’m driven by the muse of good times knowing that the experience will be worth it. There isn’t a muse for good times by the way. Maybe Terpsichore (dancing, I can dance with joy) or Thalia (comedy-I know a few clowns.)

Best wishes.

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Kinda takes away my umph for anything - such is the MS monster - can’t be bothered anymore - when i get out of bed I can’t wait to get back into it again

It sure is a huge effort to get anything done or organised, with ms. Even going out for a drink with friends, I need to know how accessable the toilets are, can I even get into wherever we are going, the shoving and pulling to get in and out of the car… I’ve just been checking in on our flights to Gran Canaria in two weeks time. All of it an effort, but I have to keep my eye on the prize. Grateful to still be able to manage it!

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Great posts. I am being socialised since i moved into sheltered. You cant walk into the corridor without meeting someone lol who wants to tell you their story, and i am trying to strengthen my body so bought myself a rollator with a seat its fab only cost me 30.00 off ebay on special discount. It has a tray and a basket woo hoo so cool. I am even taking the rubbish and recycling to the bins, and yes again socialising as it is right past the laundry room, and you know how chatty people are in launderettes lol. I have met more people this way lol. I am enjoying it more as i dont feel i have had to make an effort to go out and be friendly if that makes sense. Its yards from my front door. I can sit down and chat. BUT still if i do go anywhere it totally wipes me out, and i think its like Poppy said down to the shoving and pulling getting into a car and sitting with my legs down if i am in a restaurant. Sitting for any amount of time makes my back ache, my back ache makes me feel tired and then i start feeling my legs. By the time i have got home i hurt from top to toe. I even managed to go the lounge and chat for 10 minutes on a coffee morning. That was enough for me, but i failed and used my electric wheelchair. I am determined to strengthen my legs though but they are this morning burning, tingling and fizzing for england, as i did a bit of walking sort of just a few metres at a time and rest by sitting but its a start.