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TOPIC: lonely

lonely 26 Jun 2012 21:34 #1734486

hi

i was diagnosed 2 yrs ago and got through the past few years by just sticking my head in the sand and not facing up to what was happening to me! but now ive had my thymectomy and gone into remission and then gotten my symptoms back, im all of a sudden realising this is here to stay

my family dont really understand so therfore dont talk about it.
im struggling with how i feel about it all and have no one who understands what im going through

how do you all cope?
The following user(s) said Thank You: Kath1853

Re: lonely 26 Jun 2012 22:14 #1734487

  • richard o
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i dont think many of us go into true remission . we might have periods when we feel pretty good. the longest i've lasted is almost 2 years. i'm lucky in that my wife is a vet so understands the problem. she has been a rock through my time with mg and resultant illnesses, as have the kids though they have flown the nest.i think we should regard mg not as a great burden but just another illness. we you get ill you get the right medicine for the illness to make you better. therein lies the problem. find the right doctor first.im lucky now as i get on well with my specialist and between us we get results. dont let yourself feel down about it .we understand your problems. you arent alone.

Re: lonely 27 Jun 2012 08:11 #1734492

  • CarolO
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Hi,

I was diagnosed in 2009 and though I am better than then I still struggle and have not reached what they call remission. I have generalised myasthenia plus fibra and inflammatary arthritis.

Yes it is a lonely illness and I don't think anyone who hasn't got MG really understands what it's like - my family struggle as well.

All I can say is we on here understand and regularly talk to each other. When I first joined I still thought I wouldn't cope and what would these strangers know and how would they help me, but they have; some have become what I can only call good friends. We all try our best to help each other and without it I too would be lonely.

I hope things get better soon for you and at the moment just take a day at a time.

Carol
Last Edit: 27 Jun 2012 08:13 by CarolO.

Re: lonely 27 Jun 2012 08:42 #1734493

  • ragdoll
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Hi lousie,

Welcome to the forum, I have sent you a friend invite.

I have never had remission, I was diagnosed in December 1999, but I have had one good spell between 2005-2010 (ish), never without symptoms but much more manageable in that period. I dont' expect remission stable will do for me.

It is natural for you to not accept this situation and even to deny it, be angry etc etc, it requires adjustment mentally and physchologically not just physically, do not expect too much of yourself, you can only do your best, which I am sure you are doing.

Give yourself time, no one tells you how much of a battle it may be, and who would choose it?

We cope because we must not because we will.
Last Edit: 27 Jun 2012 08:43 by ragdoll.

Re: lonely 27 Jun 2012 21:23 #1734508

  • janet
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wish I'd read this a long time ago. I feel like I spend my entire life pretending I'm fine so everyone else feels better! then they get grumpy and tell me off for 'overdoing' it grrrrr!

Re: lonely 28 Jun 2012 22:16 #1734537

  • Kath1853
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Hello Louise

I am writing to you to ask to be friends. As you will from my profile, I am newly diagnosed and waiting for my CT scan of my chest. It's all a bit scary. Perhaps you gcould give me some tips and pointers please?

I am struggling with diarrhoea and frequency of opening my bowels as a result of taking Mestinon. Any advice?

Cheer
Kath 1853
Kath1853

Re: lonely 29 Jun 2012 10:22 #1734557

  • dusty
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Hi Kath1853

Re the diarrhoea caused by Mestinon, pro-banthine is often prescribed by neuros to try to counteract this side effect.

Dusty

Re: lonely 29 Jun 2012 14:52 #1734567

  • Kath1853
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Thank you Dusty. I'll mention it when I see him next.
Regards
Kath 1853
Kath1853

Re: lonely 01 Jul 2012 07:44 #1734602

  • Joyce
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Louise & others on this posting who don't know me.....yes it can be a very lonely place out there so to speak !!.When being newly dx ,it's understandable to want to find people who can understand,support & emphaise with you because there is that identity,as well as information & experience that is on offer.I have only been on this site for a week & I am slowly meeting & making "new friends" not thay you want to talk or write about "illness" all the time but knowing you are amongst people (friends) who you can share & be yourselves with does help.In all honesty if you cannot truly say what you feel at times like being lonely,scared or celebrate that maybe you are in remission then basically whats it all about....that's why it is good to have places like this because there are one's of us who care for the emotional side too as well as other means of coping strategies.I am very much a heart on the sleeve person if I'm feeling something I feel it's best to talk or write about it .... better out then in as they say.I pray & i'm not ashamed to say that, that helps me a great deal & to me that gives me peace.I'm hoping you all will have a special day today & maybe someone will make you smile & give hope in a path of lonliness that we can all identify with at times.God Bless from Joy (Joyce) x
The following user(s) said Thank You: esteban12, honeybee, mr happy

Re: lonely 02 Jul 2012 05:47 #1734630

  • ragdoll
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Hi Louise,

How are you, you have not posted back, how are you doing, are you finding your way on the forum, I posted a message on your wall which you can access by clicking on your name.

Re: lonely 02 Jul 2012 07:44 #1734635

  • Chakra5
Sending you friend request soon

I thought things were impossible until I joined this great forum

Chakra5

Re: lonely 07 Jul 2012 15:19 #1734757

hi everyone sorry i havent replied ive been in hospital (non mg related!) and taken me a while to get back on my feet!

Re: lonely 07 Jul 2012 15:43 #1734758

  • CarolO
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Hi Louise,

I hope you are feeling better - take care.

Carol x

Re: lonely 08 Jul 2012 12:34 #1734769

  • DebD
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Hi Louise

Hope you are feeling a little better now.

Unfortunately MG is one of those illnesses where you will have some good days, and some bad days.

Keep your chin up.

Take care

Deb x

Re: lonely 20 Nov 2012 20:11 #1735883

  • Jamesbay
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Hi Louise

I know how you feel like that, sometimes people don't understand what it is, my family have chosen to ignore it aswell, it can get upsetting that they don't seem to understand, but i'm starting to come round to they don't want to understand

Re: lonely 20 Nov 2012 20:57 #1735885

  • CarolO
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Hi,

I've been married for 36 years - my husband is lovely but he cannot get his head around this illness. I think unless you have it you don't really understand.

Re: lonely 27 Nov 2012 05:11 #1735940

  • ragdoll
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I had been meaning to post a reply for some time, but as ever too many things going on.

I am surprised by how well or much my hubbie seems to understand this condition, it seems at times that he predicts better than I, he is forever telling me to slow down, to stop going upstairs and downstairs or 'working' or 'pottering' on the various 'tasks' or 'jobs' that I have on-going at any one point.

This year it is has got to the point that there is so much I want to do and so little functional time that I guess it has all just compounded the situation. I get very frustrated as the years slip by and my functional level fails to deliver to the extent I want it to so I guess I push too hard - but he is there before me, gently scolding seeing I over tax myself way before I am prepared to acknowlege.

So I think it is possible for someone without MG to understand it, but it does require a great deal of patience, empathy and possibly being married to that person for 24+ years, and living with MG (in that person) for 10+years!!! I do know that my family do not understand it all in comparison and they have known it far longer than he has... and not everyone is able to convey understanding, support and empathy well possibly too...
Last Edit: 27 Nov 2012 05:11 by ragdoll.

Re: lonely 27 Nov 2012 17:06 #1735944

  • Maecee2
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I think it is very difficult to get your head round MG when its effects are so varied. I never know whether I'm able to complete something or go out until it's happening! No matter how much I rest before hand, I can't be sure that my battery is not going to run out on the way.
I've also been very lucky in that my other half takes great care of me and is usually aware of when I'm overdoing it. It's been life changing for him as well. But after 40+ years together, and almost 20 years of coping with MG we've evolved ways of using our time (and my limited energy) pretty well.
The following user(s) said Thank You: dusty

Re: lonely 02 Dec 2012 17:44 #1735992

  • Chakra5
The loneliest thing for me was spending 2 years with progressive symptoms, begging doctors to listen to me and was told to go away there were people with ´real´ symptoms out there needing to be sent to neurologists. And then finally when I found someone who would even prescribe Mestinon at all, and it started working, suddenly it became - Well why didn´t you go sooner and why didn´t you get yourself an MG specialist from the very beginning?

Dealing with the original symptoms was already lonely enough for me……

My husband´s mother is 80 and been running around and doing everything around the house her whole life with never a break for a breath - So it´s hard for my husband to get round the idea of having a wife like me!
Last Edit: 02 Dec 2012 17:49 by .
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