Forum

Isolation and loneliness and MS.....

Hello everyone :slight_smile: i hope that you are all as well as you can be. id like to ask if anyone else here has the same sort of experiancies to myself? im in my home on my own for most of the week, and ive started to really struggle and feel unbarably lonely. im not able to get outside of my home on my own and only have 4 hours care oa week. ive started to feel really anxious and scared and i cant get past these feelings. ive developed bad depression and ive lost contact with friends and even my local MS society. ive tried everything but it all seems to be leaving me in the same situation. my husband wont or doesnt want to understand how i feel ( esp as he works) and my ms is starting to scare me abit too. i feel totally alone in this now and on top of that im now registred sight impaired now. id really apressiate some support thankyou. moo

Moo you poor thing. It sounds like you’re having a very tough time of things. I noticed on your profile that you’re not taking any medication. Would it be a good idea to review that now? I’ve no medical background but you sound like you may be suffering with feelings of depression, which may explain your feeling anxious, scared & alone. Have you considered antidepressants? These may help you start to recover mentally, which in turn will give you the drive to start to tackle other areas. This forum is a good place to start to chat to others who can understand your symptoms and sympathise. Your husband may be scared to probe your feelings but if you’re able to sit with him & articulate exactly how you’re feeling then maybe this would open up a discussion between you both where he can tell you his thoughts too. He may be scared as well. Do you have an ms nurse? Please contact your him/her or your dr today & take the first steps to getting yourself better mentally. Let me know how you get on Jane xx

2 Likes

Hi moo, Sorry to hear you are having a bad time of it. I can relate to how you are feeling. I also am toying with anti- depressants but I still work 3 days a week and that is my life line. Maybe your husband is like mine and keeps things to himself. I did find out he was scared about how life was turning out. We are going to be selling our home shortly and move into a flat not what we were intending to do but those pesky stairs are a bugger. So life is stressful and relationship a bit strained. Be kind to yourself. Life can be hard with ms. I only found this forum a week ago and already I am starting to see things more clearly. You don’t have to be alone, just come on here and have a chat. Nothing is off limits. Mags xx

1 Like

hello mags and jane.

i have tried anti depressants before but i had bad side effects ie very bad suicidal thoughts. it was nortriptaline to help with nerve pain. it did help but with the bad side effect.

my doctor has said that theres nothing else i can try so im feeling left on my own with everything. when ive been perscribed things ive not been told about the drug at all and expected to trust the doctor and drug company.

im thinking maybe i need to change doctors its just stupid. he was very good when i was suicidal thjough and wanted to see me regulary.

where i live in the west country is really bad and theres no help really at all , not unless i travel well over an hour any where.

i too live in a flat with dangerous stairs. i had been saying to my husbanmd just how bad it was for me living here but he wouldnt entertain the idea unless he had to move for a job. now a job has come up in a place that i dont want to move to and now i have no bleep choice but to do what he wants. he wont acknowlage or let me say how i feel about things without being told to leave him alone and saying im saying things im not. i get so upset, so no he isnt someone i can ask to sit down with for a few mins at least and talk with aboput my fears ect.

im not coping and im doing everything alone

moo

hello mags and jane.

i have tried anti depressants before but i had bad side effects ie very bad suicidal thoughts. it was nortriptaline to help with nerve pain. it did help but with the bad side effect.

my doctor has said that theres nothing else i can try so im feeling left on my own with everything. when ive been perscribed things ive not been told about the drug at all and expected to trust the doctor and drug company.

im thinking maybe i need to change doctors its just stupid. he was very good when i was suicidal thjough and wanted to see me regulary.

where i live in the west country is really bad and theres no help really at all , not unless i travel well over an hour any where.

i too live in a flat with dangerous stairs. i had been saying to my husbanmd just how bad it was for me living here but he wouldnt entertain the idea unless he had to move for a job. now a job has come up in a place that i dont want to move to and now i have no bleep choice but to do what he wants. he wont acknowlage or let me say how i feel about things without being told to leave him alone and saying im saying things im not. i get so upset, so no he isnt someone i can ask to sit down with for a few mins at least and talk with aboput my fears ect.

im not coping and im doing everything alone

moo

moo

i just wanted to send u a virtual hug! i know exactly what u r saying but i dunno what to say to help you other than you are not alone in feeling like this…i really hope you find ur solution…

thinking of you…

ellie

Hi Moo I think you’re right; changing your Dr may help. There are different types of antidepressants but also counselling or other types of therapy may be constructive. Have you phoned the MS Helpline? They would be a good support for you to call if you needed someone to chat to. Things sound very difficult for you and I’ve no experience in what you’re going through so I’m sorry I can’t be more constructive but if you ever just want to rant/let off steam/chat please pm me Best wishes Jane

hello everyone thankyou for your messages , its tough having MS but when you hyave no one to help you through the things it causes its more than tough its disheartening.

moo

Hi Moo

Sorry you are suffering. Just remember that we are all here for you whenever you need a little chat to help you feel that there is always someone listening to you.

Be kind to yourself and whenever you feel low give us a shout for a chat.

Shazzie xx

Sorry, your huisband sounds like a right Richard!

Can you suggest to him, perhaps by way of a letter, that he goes and gets some counselling with regards to CARING for someone with MS? Because that’s what he should be doing… not shoving your needs and feelings to one side because he ‘can’t handle it’… MS suffers ‘can’t handle’ having MS but they have to!

I’m sorry if I have spoken out of turn but seriously, it sounds like it might be time for a big chat… and not about MS.

quote:

now a job has come up in a place that i dont want to move to and now i have no bleep choice but to do what he wants. he wont acknowlage or let me say how i feel about things without being told to leave him alone and saying im saying things im not. i get so upset,

^^^ That right there made me cry… It’s wrong… plain wrong Moo. He either needs help to deal with your new JOINT life path or like I said… a BIG chat is in order…

(((( hug ))))) Chin up Sister!

1 Like

How are you doing Moo? I keep thinking about you and sending love… Hope everything is ok.

hello mamaowl :slight_smile:

thankyou so much sweet… im abit better today thankyou i actually got out yesturday and today to a coffee morning so thats helped lots.

please dont be too hard on my husband after all its me who lives with him and i dont luike him being called things… but that aside i can see where your heart is coming from so thankyou.

i have tried and tried to talk but he wont so what on earth can i do?

but anyway at least today i had a nice day hey :slight_smile:

moo

thankyou to all the people here who have replied to my post its somtimes just so hardc when im on my own all the time.

so thankyou xx

moo

I guess you just put up with it then?

I think there is some information in the form of a leaflet or similar on the MS Society website which gives advice for carers/friends/family/loved ones of people with MS.

Maybe would be worth getting it printed out and leave somewhere he will see it and he can have a read.

If you can’t get to a printer, give the MS Society helpline a call - they can give you advice and mail free leaflets out to you.

I do hope things improve and your husband becomes more communicative. It can be hard to criticise, or hear criticism about someone you love, but it does sound as though you guys need a good chat as, from what you have said about him telling you to leave him alone etc, his behaviour does come accross as being unkind… Maybe MS Society could give you some advice on how to get him to talk about it, constructively?

PG xx

Hiya Moomoo123

Has your husband maybe not come to terms with your condition. Maybe if he doesn’t think about it, then for him it will go away. And I know you don’t want to go to this new area but maybe you can find somewhere that is easier for you to get out and about.

I wish I could wave a magic wand for you hun and make it all better. A load of big-bosomy virtual hugs is the best I can offer.

Take care

JBK xx

Hi moo,
Sorry to listen to you are having a bad duration of it. I can correspond with how you are sensation. I also am playing with anti- depressants but I still perform 3 times per One week and that is my lifestyle range. Maybe your spouse is like my own and keeps factors to himself. I did discover out he was afraid about how lifestyle was switching out.
We are going to be promoting our house soon and shift into a smooth not what we were planning to do but those annoying stairways are a [filtered word]. So lifestyle is traumatic and connection a bit damaged.
Be type to yourself. Life can be difficult with ms. I only discovered this community a couple weeks ago and already I am beginning to see factors more clearly. You don’t have to be alone, just come on here and have a talk. Nothing is off boundaries.
Mags xx

Hi there,

You’ve done the right thing coming to the forum. There are lots of people here with plenty of experience who have been what you’re going through.

I understand the loneliness you feel. If you’ve stopped driving then you cut off a huge chunk of your independence. What sort of activities did you enjoy when you could get out? Could you use public transport or does your problem with balance make that difficult?

Regards,

John

Hi at the present time balance and walking are problems and last year I had to stop working due to lots of issues… I can’t use public transport there isn’t any really where I live I rely on my daughter for going out as I feel happier if I am not out alone I am hoping these feelings will get better and it’s just a blip in my confidence Regards Julie

Hi to anybody and everybody reading this, my very first post. I have had MS for many years but despite many ups and downs I am very fortunate to still be mobile and use two hiking poles when outside because my balance is rubbish and I’ve also found just using one walking stick makes me lopsided and my back aches greatly as a result. I never walk outside alone because family have witnessed many stumbles. I have also had bowel cancer and get little or no warning that I need the toilet and of course I don’t have the ability to get to the loo quickly!! This results in many accidents after food and drink. If I am going out (I can drive with no problems) I am unable to eat or drink beforehand or indeed whilst I am out so any appointments are made as early as possible in the a.m. and then it’s the joy of breakfast once safely home however late it is. Fortunately I am not on any meds at all. Traveling and being away from the security of my own home for any length of time is a nightmare but I manage because I’ve been married for 51 years to the most amazing husband and we still have a life to enjoy. We have a large and fantastic family and I am a very fortunate lady but I would love to hear from anybody that has also has to juggle the effects of two major conditions. How do they cope etc. Thank you for taking the time to read this.

2 Likes