Ìllness. My body is failing me bit by bit, and no one around me can take it. [sad]

[Miraxx]

I suffer from multiple sclerosis. This is the eighth year from the diagnosis. I'm so alone. Those who were nearest to me all fail me, one by one. They just can't take it. They leave me alone in my suffering. And I just can´t take it

I mean, I do understand that my friends and relatives are not therapists. But how am I gonna make it all alone. I try to be courageous. But I have weak moments. Like today.

You poor thing. It's so hard. I'm so sorry you feel like this. It's tough for friends and family to watch someone they love suffer, and I think lots of people are a bit crap with it.

You're entitled to a weak moment. Nobody's brave all the time, and MS is a scary thing.

Just saying hi. I have a condition called CIDP, it's another Demyelinating illness which I've had about 9 months,and we're all finding it hard to cope I don't know how I'll be in 8 years, 8 months was enough.

I already know what the weak days are like. Not nice. Knowing whats in front of me isn't easy.

In the special needs topic we have a bunch of disabled parents chatting to each other. Please come and find us. And pm me if you want!

Take care x

I'm so sorry miraxx

Do you have outside help available? Someone to talk to? I have found a source of enormous support in my physio, she is just so caring and open and it feels like she's always on my side. It makes a big difference

Of course you have weak moments that's normal, don't beat yourself up you are only human

I sorry people aren't being more supportive, it's hard for them I know but it's even harder for you

I have had rheumatoid arthritis since I was 15 years old. Some days are good - some days are hell.

Like you, I have nobody close to me (hubby died 11 years ago).

Do you feel that you need real-life support or do you just lack company?

I have a beautiful canine companion now and I never feel alone. I chat to him - and he gives me a reason to keep going.

I did go for counselling after hubby died and I found that an enormous help. It was exhausting and emotional, but I felt I had someone who listened to me every couple of weeks. I couldn't have re-built my life without that fantastic support.

Go to your GP and say that you need something in addition to your medication. Ask if there are volunteer 'friendship' groups in the area. (I take my dog to visit our local elderlies and housebound every week.)

I am always up for having a cup of coffee and a chat as long as I can take my dog.

Mira, I am in the North West. If that is anywhere near to you, please PM me and I'll bring the dog for a visit next week.

Thank you for your kind messages.

I am seeing a cognitive therapist, although now we´ve had a summer break. I´ve been feeling low for some time now so maybe I should see her soon.

A lot of the days I have are normal and I'm in an ok mood. But sometimes...a while ago I went to the yard to say hello to my grandparents and Mum and suddenly I just broke down in tears. I kept thinking which one of us has more days ahead, me or my dear grandmother, who has been having a lot of health problems recently. She is 77. Our life has a lot of same elements nowadays. Every week is filled with doctors, appointments, labs, bureacracy...

I want to say to my beloved grandmother, the day we both will be in heaven, let´s go and have a cup of coffee and chat about everything ok?

My ms is progressing not aggressively but relentlessly. It keeps on spreading to new areas. This year I´ve had persistent trigeminal neuralgic pain in my face, last year I lost part of my hearing, the year before I had difficulties with walking, every now and then I have terrible constipation, heavy sweating, my weeks are filled with fatigue...

I´m doing heavy searching for meds for my problems and looking for good, understanding doctors and spending a lot of money on all of that. I am really well informed and educated and stuff...but it´s at least part time work for me and still ms is faster than me. And definitely faster than what I am able to adapt to mentally.

Hello you with a demyelinating disease! What kind of health issues have you had so far, if I may ask? The prospect of having more to come is not helping, I know...This is the time when we are supposed to be kind of ok lol what about five or ten years from this.

That said, I accept the disease as such. What I find so hard to deal with are people's reactions to it and dealing with that. I find it so hard that so many of my friends have left me or detached. DOn't hear too much from the relatives either.

And I absolutely find devastating the idea that I will have to be pretty much alone for the rest of my life, because although I have gotten a lot of sympathy from men, no sane man would start anything serious with someone who is chronically and progressively ill. Unless, of course, he is too. I'm rather nice looking so far so I actually do get many offers for sex, though. Several married men have approached me in order to get themselves an other woman on the side. I have even considered that as an option. I have been alone so long and as I said my prospects for a real, serious relationship are small, so what the heck, I could use some attention and pampering and help from a cute and funny medical doctor, for example. (Sorry, don't mean to offend anyone but many men really seem to think that I am now perfect material for these kind of relationships... a disabled woman with no marriage prospects but desperately in need of help)

Sadwidow, thank you for your comfort and your kind offer. Unfortunately I am nowhere near you. I'm glad to here that you have company from a pet. A friend of mine, a vet, suggested that to me, too. Unfortunately I have never had a pet and am not keen on having one. With the fatigue I would have a hard time taking a dog for outings, too. But of course, never say never...

Cats or other animals can be a great source of comfort too if a dog would be too much. My "boys" have helped me through some rough times.

My dad had MS and found a lot of companionship and understanding through the local branch of the MS Society. I know it's not for everyone, but maybe it's worth investigating?

I'm in need of comments to the loneliness/serious relationship thing I wrote above. I don't think an animal can replace a human partner, although it certainly helps to some extent. Do you personally think someone would want to start a serious relationship with a woman of progressive, nasty illness?

However many times I ask this question from myself, the answer remains the same: no, I don't think so. The only exception would be if someone fell madly in love with me and wouldn't care about realities.

I'm seriously thinking of whether I'll start seeing a few guys at the same time, you know, like I would have five lovers or something, I would never get bored, they would shower me with gifts and help me run my errands, I would have five shoulders to cry on...I presume I will never get the chance of the traditional love and marriage thing now. So I could have something else instead. It is not like I hoped my life would be like, but it is certainly better than being all alone, without hugs, without consolation, without a connection, without sex.

It's a hard question to answer, Miraxx. Would you be left feeling better or worse? Will these men care for you or are they just using them? Tbh, with the future looking bleak, I can totally sympathize with the desire to stock up on touching and sex and good times now. And yet a moralistic part of me hesitates to say "go for it" with married men.

I do think it would be something to explore with your therapist. I'm sorry I can't say yes or no, but I think at least you should make sure you're not rushing into lifestyle choices out of fear and despair, but you're taking a long, cool look at your situation and deciding what you really want.

As for finding a new relationship, again, being brutally honest, I would hesitate before committing myself to a partner in those circumstances. It does happen, though.

Are you in contact with other MS sufferers? I'm sure there are men out there in the exact same boat as you - at least it's a pool of potential partners to consider. Someone who will completely and utterly get it.

Thank you for your thoughts, NickNameTaken! I appreciate them. I feel so alone in this. There is no one I can talk to. I can't really talk about this even to my therapist, because I feel like a whore even considering this option.

You are right, my hopes lie on meeting someone who lives with an illness,too. Or, alternatively, a man much older than me, who has life experience, possibly also experience from illness and death, some wisdom. That would be what I need. Perhaps I would be good enough for this kind of guy. I'm rather good looking and generally younger looking than my age in numbers (so far at least). Highly educated. Just assessing my "market value" here.

Although, I agree, when it clicks, it clicks, to hell with market values or other expectations on both sides.

I don't know if I could live with dating multiple guys at the same time. I could of course try. That's what many men do actually. Women usually date only one guy at a time.

Or, I could forget about men and dedicate myself to my child/religion/reading/writing/whatever. I've had my share of men in my life. I could have one lover, who is also my friend and who takes me out every now and then and helps me. Sorry, but at this point I don't really care if he's married. I'm certainly not a threat to anyone's marriage. I wouldn't consider this as action to be proud of. But taken the circumstances, I would try not to think about it.

Miraxx, please don't start a relationship with a married man, he will only bring you heartache sooner or later and you will contribute to the hurt of his wife and children, you will certainly threaten his marriage.

There may be a decent single man around the corner who won't give a stuff about your illness. It sounds like you have lots of interests, you could use them as a way to start meeting new people. The more you meet the greater your chances of finding that special guy.

Miraxx, just wanted to say I really experienced the warmth and wisdom of your posts. I don't have MS, though I have another illness, and I know it can be difficult to get others' understanding or support or even acknowledgement of your frustration or pain. It sounds like you have lots to consider, are being very creative about it, and I have thought through some of these things myself. Not the married man thing though, why increase your suffering and potentially leave more suffering behind, its just a waste of time. If you are attractive and so forth, there will be lots of available single men, admittedly most of them not such a great catch but heh at least some possibilities without complications.

My aunt married my uncle knowing that he had MS. They are happily together the best part of 50 years later. They have had a wonderful loving marriage and three children. I don't know your age, but I would implore you not to give up on meeting someone who will love you however bad things are.

Could you make an appt to see your therapist again? In my darker days I benefited hugely from seeing someone twice a week and i could always tell when a holiday had got in the way of my feeling better!

Best wishes

FB

Totally agree with being in contact with the local MS society. I also have a friend with MS, and she's found the society very helpful (although I get the impression more in terms of logistics and information than emotional support).

You're certainly not a whore for considering this option! I totally get why you'd want to fill your boots (ugh, truly awful image, sorry about that) with all the physical pleasure you can possibly get.

Lately, actually, I have been having thoughts about how good it would be if western societies would turn into polygamies. Women like me, for example, would be much less lonely in that kind of society, and socially accepted. I wouldn't mind sharing my husband with the first wife. Why should they go through a painful separation if they have a good, long marriage, just because the husband has fallen in love with another woman, too? It is possible to love many persons at the same time. At the present order of monogamy so many people are left outside in a way.

I can see a case to be made for people to sort themselves into whatever loving groupings they like, although it can be a bit tricky in practice. For some reason our society seems to have organised itself so that a lot of people feel left out in the cold. At a basic mammalian level, it doesn't seem quite right.

On the other hand, I wouldn't be much of a second wife either. I am so fatigued and sick.

RIght now I'm testing a med for trigeminal neuralgia. The med has actually helped, but it makes me even more fatigued than I usually am plus it makes me dizzy and a bit nauseus.

My tooth has been aching big time for two days, too. I had to do root canal treatment because the steroids for ms destroyed a molar. Painkillers for that, too. I wonder what the other parents think of me tonight at the parents meeting at school...

Ugh, toothache on top of everything else. Icing on the cake, eh?

That's one of the hard things with MS, all that trial and error with meds, with some seeming to be worse than the MS itself. I hope the side-effects die down soon, as it's great if it's helping.

I go to a local MS mums club. I love the support, and besides, our meeting are fun! The problem for me is all except for me have hubbies. The one that hasn't is single mum as well and can't usually make it to the meetings. (I talked with her, the father of her child also disappeared after she was diagnosed.)

Does anyone know an internet based support group for (younger) people with grave illnesses or something? I´d prefer it to be anonymous, though.

A friend of mine has ms and met someone after they became ill. They are now married and very happy. They haven't been that ill for the last few years, it seems to have settled down a bit.

Miraxx- I woke up this morning feeling exactly the same as you. So misery loving company, I feel better for knowing I am not alone

I have a similar chronic condition- and can't imagine anyone taking me on what with the pain, the fatigue, the many meds and side effects and all the hospital appts. Did I also say fatigue? This week I have had to go to bed at 7.30 every night because I am so done in-it's the only way I keep working. I also have trouble walking and can't drink alcohol- so not a fun date either