Relationships - Long term partner when you were first diagnosed?

[pheonix]

were you lucky enough to have been in a stable relationship when you were first diagnosed with ms?

me? no :S

and are you still with that same person since your diagnosis?

Edited 5 Aug 2011, 9:37 pm by pheonix

[lisa]

were you lucky enough to have been in a stable relationship when you were first diagnosed with ms?

me? no :S

and are you still with that same person since your diagnosis?

 

i had been in a relationship for 9 years when i was diagnosed an am still in that relationship 15 years later

[brodie]

dxd 16yrs ago, had been with my partner 2yrs, we have an almost 18yr old son, and still together, and still happy .

Brodie

[Cllev]

I'd only been with my partner 6 months when i was diagnosed, I sat down & told him & said that if he wanted to leave i wouldnt hold it against him & we could stay friends etc, he told me not to be so daft & we're still together 4 1/2 yrs later! Saying that though, his Dad is moderatly disabled so he's understanding about loss of mobility & balance etc which helps!!

Edited 16 Aug 2012, 2:04 pm by Cllev

[pigeon64]

I am not dx, but I have been with my partner for 26 years and married for 16 of those years. If I do end up and MSer I cannot see the relationship changing.

[holly]

Hi

 

I am in a relationship and have been in the same one since diagnosis, but feel that the relationship has changed its dynamics, as the condition has got worse, love and passion has gone out of the window, and now though I still feel the same, except my libido has changed due to medication, my partner has now become a carer, originally thought that if I could hide the symptoms and present a "normal" I mean a person who doesnt have issues, it would be alright, but unfortunately in doing so made the condition worse, ended up in hospital, had another scan, was told that I had a small bleed, and this time I had an additional problem, not aware of danger so my lover has become a carer and now he is constantly watching out for me, as he knows now that I will continue until I drop.

 

You are probably thinking that I should be grateful that he still cares, maybe I read to many mill and boon, but my idea is that he should see me as an attractive desirable woman, but I know that this isnt possible because he has become too aware of my condition and he has to look out for me, to illustrate we went out for a day to the sea side, I just wanted to sit on the wall, felt quite safe, enjoying the sea pounding againt the wall, my partner started fussing, you are going to fall of the wall, really getting annoyed, that I wasnt taking any heed, we ended up going home and the stress of the row meant I was flat on my back for two days. What I would like to know from others in a smilar situation, is how do you keep your partner as a lover, despite the condition.

Holly

[Stumbler]

Holly, you need to accept that you have MS and MS doesn't have you.

 

You are still the same person, you just have to manage your life in a different manner. The more you allow the situation to cause you worry and stress, the more it will affect you.

 

So, lighten up a bit and try and get back to enjoying life. Keep MS in it's place.

 

By the way, if it had been my wife sitting on the sea wall, I'd have worried that she might fall in as well.........

 

[Scully]

Hello Holly,

 

I totally agree with Stumbler on this one. You are still the same person as you always were, things are just a bit different now for you both.

 

Your partner clearly doesn't have a problem with you, and is happy to help, you should allow him to do so....

 

My own partner, and I suspect many others in the same position, feel pretty helpless as regards to our conditions. My own chap, admits he simply has to shut out the pain , discomfort and frustrations I may be feeling, otherwise it would drive him crazy. If I allow him to do small things for me ( and I've always been fiercely independent ) it helps him to know that he's done some small thing to assist me.

 

Full on passion may have gone out of the window for you for a while, but you can still be loving and caring, as he is, cuddle lots, show him how much you appreciate his help and understanding.

 

Re-invent yourself, life may be a little different for you, but it isn't over. Move forwards together, learn to laugh with each other again.

 

The sooner you accept your MS, and stop trying to fight against it, the better and more harmonious your life will be, honestly!

 

Scully

x

[holly]

Hello Holly,

 

I totally agree with Stumbler on this one. You are still the same person as you always were, things are just a bit different now for you both.

 

Your partner clearly doesn't have a problem with you, and is happy to help, you should allow him to do so....

 

My own partner, and I suspect many others in the same position, feel pretty helpless as regards to our conditions. My own chap, admits he simply has to shut out the pain , discomfort and frustrations I may be feeling, otherwise it would drive him crazy. If I allow him to do small things for me ( and I've always been fiercely independent ) it helps him to know that he's done some small thing to assist me.

 

Full on passion may have gone out of the window for you for a while, but you can still be loving and caring, as he is, cuddle lots, show him how much you appreciate his help and understanding.

 

Re-invent yourself, life may be a little different for you, but it isn't over. Move forwards together, learn to laugh with each other again.

 

The sooner you accept your MS, and stop trying to fight against it, the better and more harmonious your life will be, honestly!

 

Scully

x

I have been thinking a lot about your advice, and do agree, but sometimes you have to put all you have in just being, you have no energy for the niceties in life, a little while ago thought I would treat myself go to the hairdresser,when it came to the basin couldnt put myself in the right position at the basin, panic set in I was off, went to the little chapel, my partner was looking for me and was phoning me, I just felt so stupid, how can anyone get past something like that , go home as if nothing happened, knowing that the monster has struck again. He returned the towel for me, I asked him not to apologise for me but I bet he did.Holly

[Stumbler]

Holly, it doesn't have to be like this. Accept that, from time to time, you may be somewhat limited. And, if you need help, then ask for it.

 

If you can't get over the basin one way, apologise and ask if you could try another way. Most people are only too willing to help.

 

You've let the Monster dictate to you again. If you continue in this vein, the Monster will create situations everywhere you try to go, rendering them inaccessible in the future. Would you go back to the Hairdressers now?

 

This is why we say, accept the situation and the limitations it may impose from time to time. Take control and manage it. It is possible.

 

Perhaps you need to speak to someone face-to-face to allow you to see clearly. Do you have an MS support group near to you?

 

You're not on your own in this situation.

 

Edited 7 Sep 2012, 7:18 am by Stumbler

[holly]

Holly, it doesn't have to be like this. Accept that, from time to time, you may be somewhat limited. And, if you need help, then ask for it.

 

If you can't get over the basin one way, apologise and ask if you could try another way. Most people are only too willing to help.

 

You've let the Monster dictate to you again. If you continue in this vein, the Monster will create situations everywhere you try to go, rendering them inaccessible in the future. Would you go back to the Hairdressers now?

 

This is why we say, accept the situation and the limitations it may impose from time to time. Take control and manage it. It is possible.

 

Perhaps you need to speak to someone face-to-face to allow you to see clearly. Do you have an MS support group near to you?

 

You're not on your own in this situation.

 

Thankyou I really do try, and I apologise for being a pain, but I get really scared, my problem is I had a best friend in the 70's. she was diagnosed at 29, the only thing that was offered to her was a compression chamber in Southampton, she was married to a p.e instructor in the army, had two lovely boys, he got custody, he couldnt stand illness. Her illness ravaged her so quickly, within a year she couldnt walk, use her upper body. Anyway it was her friends who looked out for her. She then started having trouble with swallowing, but we all thought she had turned the corner, she decided to have a party, after the party she asked 3of us to help her the next day, So we went, no answer, Rose had a key, the place was tidy there were three envelopes in the kitchen, we were calling her but no answer, we went upstairs, found her in the bathroom, slashed her wrists, dead at 31. At that time never though years later I would have the same, even though everyone says she was younger and the condition progresses quicker, it still rocked my world and now I am dealing with it, I have more support then she ever did, but im still scared, being scared make meact irrationally. Sorry Holly

[Stumbler]

Holly,

 

I can understand your feelings. Conditions with an unknown prognosis are difficult to contend with. But, no-one knows what tomorrow is going to bring them - that's the uncertainty of life for everybody!

 

Your late best friend has done you no favours in her course of action. That's the major problem with suicide, it's the legacy of problems that you leave behind with the living.

 

I've seen MS on a TV drama, as a condition which resulted in suicide. That really annoyed me. It just doesn't have to be as bad as to warrant that kind of terminal action.

 

I'm secondary progressive now. I've had MS for about 35 years. Yes, I have a wheelchair, because sometimes, just sometimes, I will be struggling with the proposed distance I need to travel.

 

But, life still goes on for me. Yes, it has it's restrictions, but you work with what you've got.

 

Send me a personal message if you'd like to continue our chat in private.

 

[Scully]

Hello Holly,

 

I agree with everything Stumbler has said above.

 

You cannot, ever, compare your MS with anybody else's. We are all so different with our symptoms and rates of progression. Most, do not progress at such an alarming rate, and only 5% , yes 5% end up being as disabled or totally wheelchair dependant as your late best friend.

 

We none of us have a crystal ball Holly, and none of us, even the neurologists can tell us what will happen when. I agree, it's a difficult situation, but worrying and stressing over it, will surely make matters worse. Live for today, don't worry about tomorrow, because you don't know what tomorrow holds. It can't be a good use of energy.

 

I have Primary Progressive MS, I know mine will simply get worse, no question in my case, but, I am progressing slowly this far, and I keep a positive open mind, that it will stay that way.

 

By the way, I can totally understand the hairdresser scenario. I told my hairdresser that there is no way I could use those backward basin things. So they now just wet my hair with a spray bottle, cut it, and dry it. Then I wash it when I get home! There are always ways round things Holly.

 

Chase the bad thoughts and worry from your mind, every time they creep in, chase them away.

 

Enjoy every day, think positive that you will be ok for many many years to come. Exercise ass much as you can allow yourself, eat a healthy balanced diet.

 

Likewise, ask Stumbler says, PM me if you want to. I'm around most of the time. Or, give the MS Society helpline a call on 0808 800 8000. It's a free confidential service, the lines are manned often by people who have MS, it may help you to talk to them too

 

Chin up sweetie !

 

Scully

x

Edited 7 Sep 2012, 11:48 am by Scully

[wendz]

HI all xx YOU SHOULD DO WHAT I DO MAKE SURE RELAX AS MUCH AS POSSIBLE THEN YOU HAVE ENERGY TO POUNCE WHEN YOUR LOVER LEAST EXPECTS IT

 

THATS THE 1 THING I'M NOT GOING WITHOUT COS OF STUPID MS JUST KICK MS BUTT .