1st time of been really open

Where do I start? I was diagnosed with RRMS over 18 years ago at age 26, i’ve had severe relapses and mild ones too far too many to count as far as I’m concerned. My 1st husband didn’t/couldn’t accept it and for that reason we ended up divorcing. I then met my second husband who really understand and supports me as much as he can, difficult for him though as he’s in the forces and spends long periods of time away from home due to the nature of his job. My kids are very much like my 1st husband and are of the view in my opinion if we don’t talk about it, it will go away! I also think that they think because I look like there is nothing wrong with me there isn’t. Could never be further than the truth as it’s killing me inside. I don’t work as the affects this illness ontop of having Raynauds has on me prevails me. So friends and family put a great deal of pressure on me and because of the person I am I find it hard to say NO but it’s really starting to wear me down. Feel so alone in all of this. Does anyone else feel frustrated by the disease that we can feel but no one can see? The only thing people can see is the way I walk or not as the case may be.

Yes.

I do my best to just get on with it but when I actually really need someone to give me a break or some tea and sympathy - well forget it. Would it be better to just give in to this wretched condition, whinge and act as lousy as I feel? No, of course not but a little understanding goes a long way.

You are not alone. I hope it has helped to vent.

S.
xx

S Thank you glad I’m not alone even though it feels like it. xx

I am sitting here, 8pm on a Saturday evening perusing the forum because of the situation you describe. Of course I understand :wink:

(no offence to any of the lovely people on the site who support and offer guidance, honest)

S.
x

Wow thank goodness its not just me. I also find it hard to say no and have got myself into some really difficult situations in the past.

I have RR for 12 years though now neuro suggests it may be SP. Also recently been diagnosed with osteo arthritis so really need to learn to say NO. though doubt i will untill all ican say is “I CANT”

XX

At some stage or other we all feel the same way. I have SPMS and try very hard not to let it get me down, although there are times when I could scream. I am lucky to have a very understanding husband but even he cannot grasp the pain that we go through. This forum is brilliant as we can moan, scream, shout and every last one of us knows what it’s about. Just remember that you are not alone, not all the time we are here to support you. Let’s hope tomorrow is a better day for you. Sending (((((HUGS)))))

Janet

x

i was only dx with ms last march but i also feel like saying i also feel fine all the time as people don’t seem interested if you complain as we look ok on the outside

sometimes the aches,pains and tiredness flare up but i find making excuses other than MS are better recieved and accepted

baz

Baz That’s not right though even though I know what you mean. I hate this disease and wish it would DO ONE. Fedup.com Xx

Hi, I too, was in that same trap. I looked fine on the outside…working, driving, no-one would`ve guessed anything was wrong. I felt worried, knackered, hassled etc.

My 1st grandchild was born just before I gave up work, due to falls, fatigue and brain fog.

But I didnt want to miss out on being a new granny. Daughter also chose to ignore my problems, until she saw me have a bad fall. But even after that, i was still called on to babysit…I coped the best I could as hubby was on hand to step in and help.

I was brought up as a soldier`s daughter and our dad was away a lot too. But mum had a good circle of close friends. Do you not have a special friend you could talk to and let off steam?

Or what about the wives welfare person? Do they still have them?

luv Pollx

Hi Poll, Yes I have a really good close friend but she also struggles with my ilness :frowning: hates to see me like this!! They do have support in the Millitary but I chose not to follow the flag because it would have meant losing my GP/Neuro (who areboth absolutley fab) plus my ex husband wouln’t have allowed me to take the kids away (not that he ever bothered with them whilst we were married) I also have a very close supportive family - as much as they put on me I can’t knock them for not always been there for me. Wish my hubby could come out now 27 years he’s done but it puts bread& butter on the table xx