Hi everyone, hope your all as well as you can be, I was DX’d with MS nearly 8yrs ago, I’m now SPMS, have been for 3yrs, I still do ok, walk with a stick, have a scooter and a wheelchair, anyway this seems to have happen since MS came along, the thougts I have, thinking people don’t care, people that I know love me, thinking that something bad is going to happen, or thinking that others think badly of me, I have my washing machine in the garage and when I went to put some washing in this morning I locked myself in, incase someone was watching, I never thought like this before, is it because I feel vulnerable, lose of confidence, I’m not depessed and as a rule have a happy and positive out look on life, despite the MS, has anyone else found that ter thought pattern have changed. x x
Hi Anon,
I don’t feel like it personally, but I am relatively able-bodied still. I recognize some of what you are saying, though, because my mum was expressing some (to me) far-fetched ideas the other day, about the possibility of someone following her home and attacking her on her doorstep. Now my mum does NOT live in some remote farmhouse, neither does she live in some rough inner city area, full of gangs and drug dealers.
She’s in a suburban residential area - I’d say average to below-average crime rates. She’s surrounded by terraced housing - opposite and either side, and although she’s in a close, it’s only number four, so anyone attacking her would be visible from the fairly busy main road! It’s not that I don’t worry about my mum, but I’m more worried she’d fall for some scam, than that some stranger would follow her home, and attack her where there’s so much risk of being seen. I suppose there’s no crime that has never, ever happened, but it just doesn’t seem to me the way criminals operate. Mum does not look at all wealthy (she does have money, but nobody would ever know, to look at her - no expensive clothes, Gucci handbag, flashy jewellery or anything), so to me it makes no sense that someone would single out this perfectly ordinary-looking lady to follow home and attack, in close proximity to her neighbours, and people passing in the street. It would have to be an extremely dumb criminal. What would be the motive, for taking such a blatant risk, when the target doesn’t even appear wealthy? Is anyone going to follow someone home, just for their pension money?
But although such fears seem weird and disproportionate to me, I can only think it must be a confidence thing. We lost my dad a few years ago, and only a year or two after that Mum fell in the street (not from frailty - she admitted not looking where she was going), and broke her ankle very badly. Since then, although not outwardly disabled (can still climb two flights of stairs unaided, and get herself about 3/4 mile to the supermarket and back - which is up a hill) - she’s never been quite the same, and now has these morbid thoughts about strangers stalking and attacking her.
I wish she would consider counselling or something, but there’s no point talking about it, as I know she never will. I know it’s normal to be a little wary. I myself worry about taxi drivers and things, especially if they’ve run me to and from the MS clinic. It crosses my mind: “This person, whom I don’t know, now knows I’m ill, and probably that I live alone, otherwise I wouldn’t need a taxi. IF I’m unlucky enough that they’re a criminal type, that might be a temptation.” But, I do not (yet) worry about people spying on me or following me home.
As you seem more aware than my mum that your fears may be irrational or disproportionate, perhaps you might be more open to counselling? It’s sensible to be vigilant, but a shame if life is spoilt worrying about things that are very unlikely… Is it something you’d consider talking to the doctor about?
Tina
x
Hello Anon,
I agree wholeheartedly with Tina. Whether your thoughts are more organic, or whether this is just a case of your confidence being dented, it can only do you good to talk things over with a counsellor. MS can give us strange feelings of paranoia so this doesn’t seem to be far off the mark.
Best of luck.
Moira
Thank you both, yes councelling could be an option, I wonder if the MS nurse could help with that. x x
Good luck with that, if she’s anything like my nurse you will wait 2years to see someone that’s if she even listens to you. Lol
You could try the MS nurse, but Graham might have a point. GP could be as good, if not better, as I’m not sure this is an MS-specific problem, but might happen to anyone. I suppose the question is, do you want a counsellor that specialises in MS, or do you not mind anyone who’s sensible and understands confidence issues, and the role ill health or any kind of setback might play in that?
Tina
x
Thank you both, never thought of that Tina, oh and Graham 100 my nurse sounds just like yours. x x
I was referred to have counselling from my GP after seeing the MS nurse raising concerns with him regarding depression. Still waiting to see someone face to face but have had 2 telephone chats with a counsellor and they have referred my for face to face sessions whenever they will be been 3 mounths atleast so no rush as with most things, still they must not think i am about to do anything stupid. Take care Katy
Thanks for your reply, no I’m not about to do anything stupid, I know for sure I’m not depressed, I think I’ve just got a bit paraniod since getting MS and feel vulnerable, too be honest I don’t think I’m on my own, I just think most aren’t prepared to say it, mind I have gone anon, simply because I feel embarassed, x x
dont feel embarrassed,i feel just the same,the thing is WE are more vulnerable when we have MS i know i am,theres some nasty people out there,they are a minority,but they are still out there,the old and the disabled are easy targets,so its up to us to be that bit more aware,im certainly not paranoid,just realistic,
years ago when i wasnt as ill as i am now, i was sat in my car,drivers side,with my window down,wating for my son in the centre of leeds in the middle of the day,when this afro carribean guy came over,smiling away at me,i immediatley felt scared,so wound my window up, locked my doors,just leaving the window open an inch,he started by saying something in a quiet voice,i said ‘sorry i didnt get that’ and he said open your door so i can talk to you properly’…when i said no he started swearing and kicking my door panel,so hard it was badly dented…it was obvious that if my door had been opened i would have been attacked and at best…had my car stolen…i drove off,but was really upset, and shaken i then went back for my son,a bit later,he said thank goodness you had your wits about you mum…
J x
Hello Anon
You have been given some excellent advice and counselling would definitely help you.
I just wanted to ask, are you managing to keep quite social with family/friends. Sometimes if we feel a bit isolated, that can make us feel more vunerable.
All the best to you, I hope things improve soon.
xx
Thank you for your replies, thank goodness you locked your car goodness knows what would have happened.
Blosson I think you’ve hit the nail on the head I’m spending too much time on my own, I speak to family/ friends on the phone, I have a sister that pops in on her way to work for about 15mins twice a week, I see friends very occassionally, I’m not getting enough contact, but the way this bloody condition makes me feel, the fatigue as well as everything else, well you know what its like, god I want a kick up the arse, but like I’ve sad I can’t believe I’m not depressed, I do keep cheerful and hve a good outlook. x x
[quote=“Anonymous”]
now SPMS, have been for 3yrs, I still do ok, walk with a stick, have a scooter and a wheelchair, x x
[/quote] You sound as though you are at the same kind of place I am. Do you ever go out on your own? I manage the supermarket (trollies are a wonderful walking aid) but stopped going into town for a look around the shops as I can’t do that kind of walking. I did go Christening dress shopping with my daughter (out of) law a few weeks ago, drove to the shopping centre and hired a wheelchair I have confidence when I’m with someone…then ping!!! You know the light bulb moment… I thought if I can do this when someone is with me why can’t i do it only own. Got to admit I’ve only done it twice so far but I got such a buzz I felt as though I had my freedom back, I even got gel nails done at one of those outdoor stall things…they were rubbish but that’s beside the point. I just felt I had some freedom back. If the mobility shop isn’t close to a car park or you don’t drive could you get a taxi to the mobility shop? It’s great having our own wheelchair but how the hell do we transport them to where we need then if we want to go out on our own. Hope you don’t mind my posting the above and seeming to assume certain things, if it isn’t a suggestion for you then maybe other people might think “yeah I could do that” Have a nice day everyone Jan
[quote=“Anonymous”]
Thanks for your reply, no I’m not about to do anything stupid, I know for sure I’m not depressed, I think I’ve just got a bit paraniod since getting MS and feel vulnerable, too be honest I don’t think I’m on my own, I just think most aren’t prepared to say it, mind I have gone anon, simply because I feel embarassed, x x
[/quote] . You’re not on your own I’ve gone from being the person who wouldn’t bother to get out of bed to lock the front door if I remembered I hadn’t locked it, to someone who always locks the door behind her when she enters the house. Nothing wrong with being careful. I put it down to having more time on my hands to think about these things and since I stopped working I’m not as relentlessly tired as I was. Just a thought is your back to the entrance when you are in the garage with the washing, I don’t like having my back to people. Jan x
Hi Jan,
Thanks for both your replies, firstly I dn’t mind you putting these suggestions forward, we all need, we all need reminding at times, I can drive, have my own scooter whic is on an electric hoist in the car, easy to use, but going out on my own, yes I do, I nip to the shops, occassional go to town, but I’m a people person and miss the company, I want o go to classes for exercise, but can’t find any that are right for me, I rave to be with others, someone I kno with MS, SP as well and she’s hdit a lot longer than me, she once said MS is a very lonely condition and boy wasshe right. x x
I have only been off work for seven weeks now and i have found my self saying how did I have the time to work! Having time to get bored or lonely is still all new. Having said that I can foresee a time when I feel myself isolated as my friends/acquaintances all have their busy lives to lead. Most of my friends are work related and I’m sure I will lose contact with the vast majority of them, which is why I was so chuffed at going to town on my own (small things etc). I have thought about classes of some kind but not sure it’s my kind of thing I have also thought about joining my local MS group, again not sure it’s for me but if I don’t try how will I know. Do you go to your MS group? They might be able to tell you about appropriate exercise classes as might a physio or your M.S nurse. I know my local council run swimming baths/gym have exercise classes that are geared towards people with physical problems, is there anything like that near you? I’m sure I’m just stating things you have already tried or thought about so apologies again for stating what is probably obvious to you. Hope you start feeling more positive soon. Jan
Hi and again thanks, I have tried my MS group and no it wasn’t for me, I’m 55yrs but young in my out look, I found everything they did was aimed at older people, nothing wrong with that, but MS affects a cross section of ages, abilities and outlooks, I have tried some of the exercise things through pals, ie swimming but my fatigue gets too bad, I’ve just bought a dvd on stretching so I’m hoping I can do that, funny after our last message a friend has texted to meet on Monday and another one is coming back to me to arrange a meet, hold to as many friends as you can, sorry to hear you’ve just finished work, good luck to you and may MS be kind to you, X
Great news about you friends something for you to look forward to. I guess MS has been relatively kind to me I have had symptoms since my early thirties, now 54 so I haven’t done too bad. Enjoy the rest of your day. Jan x
Good to hear friends have been in touch Anon.
Why don’t you think about joining some day or evening classes that interest you, what do you like?
learn a new language perhaps or flower arranging, painting!! Whatever floats your boat
Good luck, hope things improve soon
xx
Hi, I was dx 6 years ago and at the time was feeling not too bad. I went into town whenever I wanted. I went on nights out and had lovely holidays. I didn’t see the need to get involved with any ms groups or anything. Over the years I have became more disabled and I suddenly became aware this year how isolated I have become. I hit a brick wall at the beginning of the year and became quite depressed. I no longer went for nights out. I couldn’t face hiring a wheelchair for going into town. I don’t drive anymore so have to rely on husband and family for lifts. I know it’s only myself that can get me out of this situation. I think it’s a confidence thing. In my head I would like to get a mobility scooter but I am not sure if I have the confidence to use one. We have been invited to my nephews wedding party in a couple of weeks so I am determined to go. Small steps but it is a start. I am 56 also with a young outlook. I just want my life back again. Mags xx