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Everyday living
1

Hi Guys,

I have been DX for 4 years now. I am a 29F with RRM MS. However, as my symptoms have worsened over the years and I a now fairly housebound without my bf taking me out (I have seizures and fall a lot). All of my friends have ditched me as visiting my shanty house is not as fun as going out and about in London town. This year 0 ppl texted or sent cards for my birthday. I feel fairly lonely and isolated. Just wondering, has any body else found this?

Also here are some fun quotes family have said over the holidays:

While talking about our severly disabled uncle with Parkinsons my cousin said “there is only one thing worse than what he has, and it is a thing called MS - it is the worst…” He then went into a 30 minute rundown as to how MS had devestated his friend’s life (pretty horrendous story). My response “I have MS”. Nice one. How can your own cousin not realise you have MS…

“Do you take anything for it…?” Like I have made it up…URGH. idiots…

“Are you sure heat makes it worse? Did you just come up with this or did the doctor say?” As my father-in-law cranks up the heat…

Hope you are all having a fab christmas! XXXX Lori.

2

hi lori

how horrid of your friends(?) and family

do you live in london?

i dont know whether its the north/south divide but people here in greater manchester have been fab with me since my dx

anyway you have lots of friends on here so heres wishing you a belated happy birthday

carole xxx

3

Hi Carole,

Northerners are wonderful people. I have met some lovely ppl from your ends back in my rock and roll days.

I suppose it is easy to forget about people. Thank you so much fore your birthday wishes.

I live in Brixton, London - I have lived here for 7 years after moving here to teach from Australia. It seems to hard to go home (the heat is a killer in Australia and I do not cope).

I agree - the North is much friendlier than the south. I have had so many episodes where I have been on the ground crawling, spasming in front of people and they just walk on or just watch. HAHAHA. Too many folks in London…

Thank for the support.

xxxx Lori.

4

The only people I call my friends now are my carers - not even a bf (sob sob). Don’t go out as not allowed on roads due to eyesight (ON) and can’t walk more than a few yards. Live with elderly brother who has his own health problems. A few pals on the IA site forum, but dread Christmas as everyone seems to have family and friends to visit. Brother hates it so not much fun there! Mobility scooter tried, but very narrow footpaths round here and cars park half on them as road is narrow too. Only friend from childhood lives in Vancouver. So no, TTT, you’re not alone. My neighbour says I should walk more as it “would do me good”. I wish! Am now paying my care agency to take me out - ANYWHERE - once a week, just to see if the outside world’s still there. So far. it is, but I’m not part of it.

5

Hi Lori I can relate to what you are saying I have lost several friends over the years and one just recently (My choice) because I couldnt keep up the pace. Some “friends” are best left to do there own thing.

Im a northerner but live just not far from London if ever you wanted to meet up for a chinwag. Iv been having some increased symptoms for the past few months and still not sure if its a relapse but Im still fairly mobile to a limit and would be happy to meet up or pick you up.

Any other Local MSrs who would be interested in meeting up ???

Kim

xxxx

6

Hello Lori,

I am so sorry to read of the bizarre reactions you have had from your friends & family. Unfortunately, some numpties read half a paragraph in a magazine, think they’ve got it sussed and they imagine a complete book! I was dropped like a tonne of spanners by most of my friends when I was first diagnosed, but because I was only seventeen when that happened, I assumed that my youth had a lot to do with this, as which teenager wants a disabled friend with serious depression? I felt about as fashionable as halitosis! I lost various members of the family too when they realised that I wouldn’t be bouncing up and recovering any time soon. In your case, I suppose that you have just got to educate the people around you, and drop hints about how limiting MS is, and just what it entails.

Best if luck with this, and you should be able to get through them at some time.

Best wishes,

Moira

7

Hi Lori,

I understand where you are coming from as I am pretty much in the same boat as you. I have secondary progressive ms and life is so lonley for me. I am just turned 40 woo hoo so shouldnt my life begin ?? I moved back to where my family all live for what I thought would be for emotional and practical assistance, however after allowing my sister to become my main carer for almost a year and who was paid rather handsomely might I add things did not work out so she stopped a mutual desicion. Unforteunately for me it would seem nobody in my family now wants anything to do with me, not even a phone call Still life goes on and my partner and I manage. However I see nor hear nor do I speak to anyone so I am alone all day every day apart from the company of my two jack russels oh and Ruth the local JW whom I drag in for a cuppa and chat. I cant even get out of the house as I can no longer propell myself in my wheelchair so wait for somebody to call with my doggy eyes in the hope for a push somewhere, anywhere.

My email is[email address removed by Moderator - for your own safety] should you ever fancy a chat/maon/grumble whichever. Excuse my spelling though I blame my hands on this damn keyboard lol.

Take care and stay well

Simmonette x

8

Hi Lori. Hi Simmonette,

I really feel for you, i am in the same position,lost so called friends along the way,so called because they were’nt really friends at all,dont even miss them either,same with siblings too,they dont want to know,so i keep myself to myself,my partner and me and the 2 grown up kids,manage by ourselves,in fact i have always liked my own, company.good job i do too,lol,but at least i managed to bring my 2 up before i got this bad.i am 55 in june, and i would have hated to have been this housebound,when i was younger.but at times i do feel very isolated,and coming on here is my only outlet.

jaki xx

9

Hi, I am saddened to read how many of us have been left isolated and alone, through no fault of our own.just down to this stinking, hateful condition.

i am luckier than some, as I am still able to get out and mix with people. But to do that, i am dependent on others to take me out.

To those of you who would like to get out more, why not ask for an assessment from your social services?

They may be able to help you get out.

much love and best wishes for 2013.

luv Pollx

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Just too ill to get out Poll,my partner could take me out,hes my carer.but am too ill to be out of bed, can only get up to get to bathroom.and feel that ill i have to get straight back in bed,cant do with too much stimulation either it makes me feel even worse,all i can do is read, come on here and bathroom and thats my b****y lot for now, and cant see it changing anytime soon.

Happy new year to you too.

jaki xx

11

Hi Lori, when I think of how many people I mixed with, I can understand where you are coming from. A lot of my previous contacts came from the hobbies I participated in and sports etc. I guess I am lucky in that I am still working and have good workmates and also through my friends at church - should anything happen to change that, goodness only knows where I might be.

One of the most important thing to remember is that when you are here on the Forum, you will not be alone.

Take care

Willie

12

Hi Lori [and others]

I too am a Londoner [North] and generally I would agree - people just don’t seem to have time or empathy especially with disabled/elderly people - irrespective of where they live or come from. I have found friendship and help comes from the most unlikely sources.

As Kim suggested [on earlier post], meeting up etc would be a good start to making new friends ?. pm me [or anyone else who wants to chat/moan/groan].

Take care

Jody x

13

Hi Lori [and others]

I too am a Londoner [North] and generally I would agree - people just don’t seem to have time or empathy especially with disabled/elderly people - irrespective of where they live or come from. I have found friendship and help comes from the most unlikely sources.

As Kim suggested [on earlier post], meeting up etc would be a good start to making new friends ?. pm me [or anyone else who wants to chat/moan/groan].

Take care

Jody x

14

Hi Lori,

I think this says more about your (so-called) friends than it does about you. Are they really gadding about London all the time, having a whale of a time, or are they just focused on their own domestic situations, which might not be very exciting either? It can seem, at times, as if everyone else is having a better time, but they may mainly work, then go home to cook dinner and watch telly, just like millions of others.

I think it’s a little unfair of some posters to paint the problem as a “London” one. I doubt it’s specific to the location, as London’s probably the most cosmopolitan city in the world, so there’s no such thing as a typical Londoner. Like any big city, you can find all types - some friendly, some not so friendly.

So you may just have been unlucky in your choice of friends. But in the light of other recent threads on similar subjects, I wonder if there might also have been a degree of misunderstanding. Do your friends know you would like them to visit? Because a lot of people, knowing someone’s ill, may worry that a visit would be a burden or an imposition, and avoid it for that reason. Unless you’ve expressly invited them round, friends may be unlikely to “drop in”, thinking they will spare you the trouble.

Also, I wonder if you’ve been too quick to accept you just “can’t go out”? You say you CAN go out with your bf, so what would it take for you to be safe out and about with friends? Do you need to be more up-front with them about the fact you’d like to go out, but what your needs and limitations would be? E.g. “I could not walk far”, or “I don’t want to go anywhere that’s upstairs”? I think if you took the initiative, and set the scene for some things you would be able to do, you might have more luck than just waiting for friends to ring and come up with something. After all, they can’t be expected to know what you can and can’t do on a daily basis. They may be scared that if they ring and suggest something, you might say: “Oh no, I’m far too ill for that!” So if there are places you CAN still go and enjoy, perhaps it’s for you to suggest it?

Do you have the seizures very often? Are they being controlled with meds? If at least one member of the party was briefed about what to do in the event you had one, would it be safe for you to go out?

I must admit, my friends vary between not realising that dragging me all round town all day, while looking for stuff for themselves, is not very considerate, to assuming I’m not able to do anything. I had tickets for the Olympic Closing Ceremony. One cheeky friend, hopeful of bagging the tickets for herself, said: “But you won’t be well enough to go, will you?”

I must admit, I’d been in two minds, but that remark sealed it for me. I thought: “I’m damn well going if it kills me! Not handing over the tickets to you, you cheeky mare!”

Tina

x

15

Thanks for all the replies guys. I am a bit too tired to reply properly right now, but it is interesting to see the differring opinions.

Nice to know I am not alone. xxx

16

I cannot believe how horrible people can be,i have a friend who has MS (i do also) her family do not help her or visit,she has 2 sons 1 living at home aged 20 he just couldnt or doesnt show that he cares about his mother,she has no partner.She is just on her own i can only visit when feeling ok myself which some days i am pushing myself to my limits,as i am not giving in to this horrid illness.My friend cannot go out on her own in her wheelchair she is affraid of being attacked and not able to defend herself,i cannot walk far so we are a right pair.But one thing this illness brought is a Great Friend my MS friend she is one in a million i feel so lucky to have found her.Another thing i am so blessed to have a wonderful family they mean so much to me . Jackie x

17

I have lost a lot of friends, my ‘best friend’ in particular who the day after my dx said ‘are you not over that bl**dy drama yet?’ After SHE had brought it up in conversation. I have never seen her or that group of friends since. I used to see them pretty much every weekend which meant I had distanced myself from others. Now I often feel I have noone but I do not regret walking away and never looking back. We do not need people like that in our lives. Hope you are feeling better x

18

So many people who have lost friends due to MS :frowning: I find that I am seeing less and less of my friends now, its hard to do the stuff we used to do, its hard for me to relate to their lives and them to mine. They were all incredibly supportive to begin with but now the novelty of taking their poorly friend out has definitely worn off.

Big hugs to everyone- you don’t need that negativity in your life xxx

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Please see the “Wheatsheaf” post on this forum :slight_smile:

S.

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Hi

There is a gathering at the Wheatsheaf Pub in Surrey in February. It is informal, it is at lunchtime before the dreaded fatigue hits :wink: the pub prices are reasonable and everyone is welcome.

I live at least an hour away, and to be honest it is not easy for me to get around or to get there but I am glad I made the effort. I met some really, really lovely people.

It would be nice to meet others from the forum in February.

S.