@motherofchaos 

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motherofchaos

Delayed emotional response to diagnosis

Hi. First post. I have RRMS diagnosed 5 years ago but have only just started taking Plegridy. I'm finding it very tough emotionally. My neurologist told me to "complete my family" before commencing medication. So I think I've been so busy doing just that, that I've kind of ignored the fact that I have MS. I am very lucky that I have been able to do that. Aside from initial relapse that lead to diagnosis (Diplopia) my symptoms have been very minor and easy to hide (mild sensory (numbness, tingling, nerve pain, 'odd' sensations), some slightly slurred speech, some cognitive changes (for which I have been conveniently blaming baby brain!!) and the main one - fatigue!) so all pretty 'invisible' symptoms really. I think also, a significant issue for me is worrying about the unknown down the line, and how it will affect my children. I now feel emotionally, like I'm right back at the initial diagnosis stage. It's only just hitting me that this is it now, I have to inject myself for the rest of my life. I chose Plegridy as it's only one every two weeks, so minimal impact in the grand scheme. I've only done first injection so am hoping the side effects will reduce once I'm up to full dose and have got used to it. I just feel so sad and angry, and alone. So I guess that's why I'm here!! I do have a great support network my husband in particular is fantastic and so supportive, along with other family and friends - again I know I am very lucky, but I don't think anyone who doesn't have MS or a similar health condition really gets it. I also don't want to burden people and make them worry about me even more. I swing between feeling quite down and 'woe is me' and 'for goodness sake grow up other people deal with much worse!' I thought I'd done all this and moved on so feeling like this now has taken me a bit by surprise. Thanks for reading xx
@Stumbler

Hi @motherofchaos and welcome. I can completely understand where you are emotionally at the moment. You've been able to put your MS into a box over the last 5 years and you've been able to move on with your family. But, now, adopting Plegridy as a Disease Modifying Treatment (DMT) has reopened that box, bringing your MS back into focus and making it real again. It's almost as if you've been in denial these last 5 years. You now need to navigate the rollercoaster ride of emotions that are necessary to reach a state of acceptance. So, go easy on yourself as you take this part of the journey. But, be comforted that the medical landscape of MS treatments has advanced over the last 5 years, so there are now a range of treatments to help you manage this condition.

@Avengr13

@@motherofchaos I know exactly how you feeling right now because I went through it myself. I was questioning at 23 and newly diagnosed if I should have a child let alone to raise one. But I did. A alone too for a while. Yes, I had my episodes, went to one of my 7 y.o. Little girl's soccer game with a shunt in my hand (grossed the other little girls out lol) that day I went back for the rest of my IVIG. But it is a story we laugh at now. My daughter is now 23 and happily married. She worries she may get ms. But so far so good. I have married 2x and have been married to my wonderful husband for 20 years. Ms is not a death sentence. It is a lifelong sentence, at least for now. But so is diabetes. And so are many other manageable conditions. Please have hope that this is still early in your life. You can persevere and raise your children to adulthood. Just take your DMD and take care of yourself with a good diet and exercise. Make sure a time is blocked out for quiet time for mom. You can do it! I am in my 30th year with this disease. Take care and hugs! ?