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Fed up of people telling me what to do

Do you ever feel that with the diagnosis you lost a degree of control ?

I am totally fed up of everyone talking as if I am not in the room.

I have a new baby who is an angel so good its not true I am coping really well.Yes I am tired but what new mum of two weeks isn't .My Mother and Mother in law and my GP are totally stressed that I am breast feeding her and that it will wear me out and I will relapse.My husband tries to put me to bed all the time and the midwife is coming twice a day.

I just want everyone to leave me alone.I have a neurologist appointment next week and I know he is going to try and get me to start betaferon which will mean no breast feeding and a whole load of new issues.

I want to put it all off I want to feed Violet until she is six months then try and have another baby whilst I am relatively well then I will do the betaferon thing and will fight MS with everything they can thow at me but just now I want everyone off my back.I want to be a normal Mum ok one that cant see that well and wobbles a bit.If one more person says she needs to start on drugs whilst I am still in the room the whacky baccy is coming out 

lol x

OK, calm down - nobody is going to force you to take drugs before you are ready to, it's kind of frowned upon to hold someone down and inject them against their will, unless under extreme circumstances.  Have a quiet word with your husband and the mothers, let them know how you're feeling.  You've done the motherhood thing before, you know the routine.  You are a person first, mother second, person with MS third - you can't ignore it, but you can work with it, and you will find your own way to do things, just like you have done throughout your life, it's how we survive.  Yes, you might relapse, but that may happen whether you're breast feeding or not, and if it does, you'll deal with it.  It sounds like you have a good support network around you, although they are perhaps overdoing it just now, but it's early days, hopefully they'll back off a bit when they realise that you're not going to collapse with no warning.

Look after yourself,

Luisa x 

I don't have an official dx but I know how you feel.

Its been my experience that when people know about my heath problems that they feel entitled to comment about everything. It is intrusive and tiresome and when I set boundaries I seem to be perceived as the grizzly, unreasonable one.

It is your life. Make informed decisions and do what is best for you. However, you may want to discuss these things which concern you with the only other person that your MS also affects, your husband.

Tell the rest to back off. And keep telling them because a wise person once told me people will keep commenting/asking until they get the answer they want, which may be never ;)

Best to you

Tu

Hi there elliebb,
One thing you have to keep in mind is the qualification for any of the DMDs:

Two clinically significant relapses or events within two years.  An event could (for example) mean a new lesion showing up, or serious vision problems.

You can look at this as counting backwards and forwards from your last relapse.  If you qualify now, then you have probably had those two relapses in the two year period, or maybe they have been close together.  So you take the last one, go back to the one before, work out the "two year period" and calculate how long you have got before you have to decide.

If you say NO now, and you do not have another relapse/event within two years from the last one, you no longer qualify, and you start counting again from the next one.  Only you know just how bad the relapses were, and it really is your decision.  Only you know how you are physically, and how you might cope with the demands of two very young children.  Work things out for yourself, and don't let anyone push you into anything until you have.

Geoff

do not let your docters or fammily push you into doing things you do not want to do. My situation is differnt but my mum is pushing me into doing things i dont want to do. As soon as she starts pushing my hands start trembling and my head starts killing me and once it starts im like it for a couple of days after. The stress makes me worse and my mum dosent relise she is instantly making me ill. Please for me dont let yourself be pushed into things that will stress you and make you unhappy you realy dont nead it.

Hello, congratulatios on your new baby, I love her name!

 

I just wanted to say, that even if you didn't have MS everyone would have tons of unwelcome advice for you! I can remember wanting to punch several people a lot during the early days of babyhood for offering all their words of wisdom. Keep calm, and be strong, you can do anything that YOU want to do

 

Amylou x

Thanks everyone

    Dr Geoff I have until January to decide working on the two year thing your post really helped me get everyone off my back.So its the Ellie and Voliet show and we are rocking as long as I sleep when she does we are fine.I saw my nueurologist who agreed I was doing great and that he will see me in late November and review medication options then.

 Ellie x

Hi, well as you said, you are fed up of everyone telling you what to do. So now we`re telling you what to do. And that is;

do what YOU want to do!

You sound like you know your own mind, are sensible and have a good family, who should be offering help and not orders!

I have a sneaky suspicion here.....they only want you to stop breast feeding, so they can do the bottle feeds and have a sneaky cuddle, eh?

Enjoy the gorgeous little Violet.....she will soon grow up and then she`ll be telling  you what to do!!!

luv Pollx

HiI eliebb

Gear name for your baby, love it. You ave a lot on you plate but no one will make you do any thing.
Explain to the neuro that you want to feed Violet and that even though he wants you to start the drugs, currently you do ot want to. Also explain these wishes and why to your midwife. The frequency of the visits is tiresome And I bet you ie down for a rest and get Violet asleep and the midwife comes, what happened to rest.
You need to look at this
It is your body, up too you what you do, and this no matter what cannot be taken away from you. Explain you wishes to your other half, so he understands your situation.
Most of all enjoy our baby, you oth come first

Take care

Mike x

Thanks all

 Mike you've got it we will be ok though and Pol I think your right .Last week was dreadful everyone was bossing me about but they are all slowly getting the back off message now and I am just loving being a Mummy.You wouldnt believe how handy a bugaboo is when you feel a bit wobbly no one need ever know.

 Ellie x 

Hi Ellie

Enjoy Violet and being a mum.
Take care

Mike x

my babies are 20 and 23 and i can remember especially with the first that folk didn't know when to go home, and that was pre MS days, get your hubby on your side and get some time for the immediate family, you will be less stressed and we know what stress does. Regarding the breast feeding a nurse at the time said I know what the text books tell us but you are the expert, so keep that in mind and enjoy your time with your new baby

 

good luck

 

trish