Isolation and loneliness and MS.....

Hi, sorry, but I`ve only just seen your post.

I do feel for you, as I know how I hate being on my own. I am very dependent on others for the majority of things.

I see you have 4 hours care a week. Do you pay for this with Direct Payments?

I have 25 hours plus 2 sleepovers /care a week, paid for with DPs.

I rely so much on this, as does my hubby. He is my primary carer and it is very hard going at times.

Have you tired to increase your care package?

I know in these times of hearing how bad the social care system is and just pray I dont get my hours cut.

My care plan manager is coming to review my care on 27th March.

I think it would be a good idea to see if you can have an increase.

It sounds like you have serious needs for more help.

pollsx

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I LOST MY MUM AND MY HUSBAND OD 25 YEARS LEFT ME TWO WEEKS LATER NEVER KNEW ANYTHING WAS WRONG WITH OUR MARRIAGE I KNOW HE WAS FED UP WITH THE WAY I DRAGGED MY RIGHT LEG AND THAT I WAS ALWAYS TIRED BUT I WORKED 5 DAYS A WEEK AND I WAS LOOKING AFTER CATS FOR RSPCA AND THAT IS WHERE MY HUSBAND MET HIS NEW LADY I FEEL SO LONELY HAVE MONEY WORRIES AND REALLY DONT KNOW WHAT TO DO IM SO SCARED FOR MY FUTURE AND ALSO FED UP

Big big hugs

Hi Moo,

Going through the same things, live on my own hardly see anyone difficult to go out on my own i know im depressed but dont want to take anti depresents put on a front that my grown up girls see through. They have their own lives to live. Everything is getting on top of me. I have plans to move into a retirement village but selling my property is taking time. Sometimes i think is it worth it!

Hi everyone

Iā€™m trying my hardest but iā€™m so depressed and fed up. I lost a job I loved last September and due to mobility issues iā€™m struggling to find a new one. In my previous job I was paid to talk for 20 hours a week now iā€™m stuck at home all week I have no friends and no family due to walking problems iā€™ve 2 dogs I can no longer walk so my home has become my prison and its really really getting me down. I share my home with my 20 yr old son and a former older partner who drives me insane as unable to hold conversation and his only vocab is yeah, nah, wanker and hello. I have a punchbag for when I get really angry but lately that is not helping but making me angrier. Please help I canā€™t be the only one feeling they are slowly going mental

Hi,

This an area of MS that is frequently ignored. Without a job we donā€™t have any social or economic independence. Itā€™s common to find that we lose our friends and sometimes our family.

The result is isolation. This is a very bad thing.

Are there any opportunities volunteering where you live? Ask your local authority or at the library.

Get in contact with your local MS Group. They should be able to help you meet up with other people like yourself.

This forum is quite a busy, chatty place. If you find a thread that you identify with you can quickly be part of the online community. Failing that, you could start your own thread (you have joined the end of a rather old one).

Best wishes,

Anthony

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Hi All,

2003 Major relapse, went into relapse remitting, lost job/clients/colleagues, over the next 8 years got better, thought I had beaten MS, big mistake. Went into secondary progressive, now 90% bedridden, no balance, impotent, cannot drive or walk.

Today son and daughter out with friends and my wife has gone to a conference (so she says!) friends are all active with busy lives, future looks bleak, getting weaker and thinner, still must stay sane somehow.

I have this vision of MS where I am a fish swimming in a circular river round a circular island. This is the river of life where everyone is swimming as fast as they can round and round. Suddenly I got thrown out of the river onto the island and all I can do now is watch as friends and relatives go happily round and round. Sometimes they jump out and say hello and then jump back in again, they have the choice, I know that I will never swim in the river ever again, it is so finite, I am not dead but I am not really living either.

Takes some accepting, not so easy always trying to look on the bright side of life.

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Big hugs & really get the feeling. At the moment I am still working full time, but trust me I get it.

the only thing I would say is ā€¦ Sorry but if you are distrusting your wife you need to chat & resolve. !

I donā€™t like me anymore, so I find it hard to accept that my hubby likes me, talk !

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Hi

No, I donā€™t think youā€™re the only one. So many of us can relate to feelings or depression or despair or anger. During my darkest times I felt like I was not living, just existing, and with no hope. Things have changed a lot since then. Iā€™ve built a life, and grown a lot. Itā€™s taken years though, and been painful at times. And Iā€™ve no doubt itā€™s God thatā€™s got me through it and restored my hope. Even if the future is uncertain in terms of my physical health, I trust him more and more that my life can have purpose and meaning.

Dan

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I have had MS 15 years now, in the first portion of this things werenā€™t so bad - my daughters were living at home, and I was using this site once before, met someone, and suddenly caught pneumonia. I was 4 months in hospital, and already through physio for my legs failing me, but after fighting the battle I lost complete control of my legs, and bowels, and he left. My girls moved out and got on with their lives, and though for visiting when they can around work, and having moved so far away to be with said person, I am now more alone. My MS makes me very sleepy and I am constantly sleeping away my days, and forgetting the date and the time, and have recently been on the phone to a therapist, and came off the phone no better. They said my problem is more physical than mental, and to contact my social worker (all in process, but just taking a really long time, one of my daughters has been doing her best to chase things up) about a companion. I havenā€™t been so fortunate to have a lot of family or friends in this area, or even a husband from having been previously divorced well before the onset of all this. I am 56 years old now, and for being so young for all these elderly things occuring to me, I donā€™t know what more I can do to enjoy this life to itā€™s fullest.

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Wow, everyone on here is so wonderful. Moomoo, remember you might feel lonely but you are not alone. Some harsh thinking needed I think. Not easy to say but as my GP says to me ā€˜Time to do this or that Pam, no rush, tomorrow will doā€™. I have support from him and my specialist nurse and as they know me well and know I donā€™t like any grey areas or bull doo dads, they tell me straight. If I am feeling blue they tell me off, if my blood test tells them I have been eating fatty food I stop, if my leg stops working I try to stretch it each day to improve it, it is all hard. They told me to change things slowly but also exactly when to stop doing certain things, starting others, recommending things that I would have never gone to previously, gave me about volunteer transport and the bus for disabled people that you can phone up and picks up outside the house. The library offers things on a Monday and Tuesday for anyone who wants to go, we all have something a-miss with us but it is a lovely time. I donā€™t attend much, I donā€™t do much but I do do some.

For very few people I think, the friends remain. For me and a lot of others, if you canā€™t stand in bars or bounce about here there and everywhere, we go to the back of the queue. I have five that I see several times a year. After that, they have all gone. I donā€™t mind, they have lives - go live them, be well. It is just difficult adjusting after this happens. It is easier for me as in my background although there were people there, I have always had to be careful about looking after myself so I am very independent and so it is an extension of how I lived previously. However, I never depend on anyone so I have to be strong and pull my socks up regularly, especially on the days when the world seems to cave in and my bungalow looks like I am looking out at the full, fat world. Stopping in all the time with M.S. is like fear of heights, it just gets worse if not tackled. If you sit in everything will deteriorate, no one person can be expected to change all things without help. I suggest getting a big pad of paper some different coloured pens or using your computer if writing is difficult, writing down all the things you see on this forum and locally that are about. There will be one thing that can help. Keep this as your record of what you are looking at with phone numbers etc. But, hereā€™s the hard thing, be responsible for it. My GP, the nurse, the disability shop, the CAB, even the PIP lady all pointed me in the right direction otherwise I would have been a bit stuffed! The local council, library, support groups, volunteers, they are all there. But gathering yourself and changing things is down to support and you, like a partnership.They all helped me be very organised and make some decisions. Well, if some years ago in Sankey Soap nightclub dancing all night somebody had told me that the highlight of my week now would be the colouring group at the library on a Monday I would have called them a liar! Anyway, see what I mean. Keep posting. Some help is there. GP first call I would say, Gp then emotional support then find something close and see if there is any way of getting out with physical support. If you are sight-impaired have you asked any group locally what they offer, how they get out, how they manage?

ps I only went to the local M.S. support group once, everyone was so nice but quite a few in denial, it made me feel bad and I was shattered for days afterwards. Decided to go to a ā€˜healing clinicā€™ on a Saturday instead. Much nicer with free treatments and warm people.

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Good advice hebeyellow.

Sometimes tough love is hard to take. I like yr way.

Good luck Moo moo

Anne

Hi MooMoo

Please accept my heartfelt sympathy and empathy regarding your situation. My situation was a similar one for 8 years,I felt like I had lost my freedom, my independence and my identity.

I hear what you are saying about withdrawing from society, friends and even the world in general, whether by choice or circumstancesā€¦ I suffer visual difficulties and it is one of my symptoms which I fear the most. It sounds like you have found yourself in a place of feeling torn, feeling like maybe you should be engaging more with others while also struggling to find who you are, now at this moment. At my worst place I felt more like a burden than a person, especially as my relationship of 15 years was more like being house-mates who shared bills and responsibilities than an actual partnership.

I am on antidepressants, Duloxetine. They are given to diabetics for nerve pain (as this is a side effect which is very useful for MS too). I hope that you can find the strength within to challenge your doctors. No one knows you as well as you do, although it is the most difficult relationship you will ever have, it can also be the most rewarding.

I hope that this day gives you plenty of reasons to smile.

Much love

Ms E

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Hello to all who reads this.

I signed on because I feel isolated and alone with MS with no-one to relate to but not overly keen on a forum I have to admit.

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Hi,

A forum seems an unlikely place to get to know people. It looks impersonal and itā€™s not naturally inviting but once you get used to it this is a very good place to exchange ideas and let off steam.

Why not spend a few months just reading posts that catch your attention. Later, if you feel inspired, you can join in a conversation. As you get to know people you share the same sort of ideas with you can join in.

You could make some new friends. I know I have.

Best wishes,

Anthony

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It is a rather unlikely place but Iā€™m sure Iā€™ll get used to it.

Hi Brian,

And welcome.

Anthony

Hello

Welcome "anonymous ". I posted on this forum back in March 2017 and never received any replies to my questions re coping with the DOUBLE WHAMMY of MS PLUS bowel cancer. I have yet to hear whether anyone else is in the same boat as me. Perhaps Iā€™m unique lol. Seasons greetings and may 2019 be kind to us all

Hi

I am sorry you have had no replies. It sounds like you are going through so much and at this time of the year I find it hard. I have had MS 38 years and am deaf but so far thats it plus the old age issues of high blood pressure anaemia and a list of other bits I wouldnā€™t bore you with

Just because we have MS sadly doesnā€™t stop us from having other things.I doubt you are unique in this but replies and posting seems few and far between, I am struggling at the minute because we are waiting for my husbands prostate histology and the house of cards has toppled .

Its very hard to cope with your cancer diagnosis and MS. I think you need to speak to an MS Nurse and maybe a Macmillan nurse. They are both very good at talking and helping. Maybe you have a bowel specialist nurse. If not get your GP to refer you. You need more help than a forum can give you to sort out the medical bits in my opinion, I had hoped that there was a few more people about as being deaf I obviously canā€™t talk a lot as its not a birth defect and I canā€™t sign as my fingers donā€™t work.

I wish you the best for the future and I guess I will be logging in time to time if you need to offload a bit.

My issues are very different having coped with MS 38 years but been through most of them so maybe some help?

I dont want to push my problems on to you you have enough to be going on with.

Take care Xara