Transverse Myelitis & Me, With A New Addition!

A Week Of Emotions and Realisations

Written by

MeT2711

in

I think this week has been the hardest week I’ve had since my diagnosis. Not just physically but mentally too.
Not only did I have to accept that I can no longer care for my children in the way I did before but I had begun to realise that my biggest goal of doing stairs so I can go home was further away than I had hoped.

Top that off with being told the doctors want to see what happens if they take my catheter out and hey presto I was a sobbing mess.

It is so hard facing up to the fact my life has changed so much in the past 2 months. I can’t do so many things that I had done with ease at the end of 2015.

I never imagined that I would end up with a catheter as I can’t feel my bladder. Since its been in and on a flip flow I’ve had 3 big accidents whereby my bladder has bypassed the catheter and I’ve wet myself.
So imagine my horror when the doctors told me that next week they want me to see what happens if they take it out. I know what the outcome will be and I really don’t want the humiliation as I wet myself again.
They fully understood my concerns but they need to know if my bladder will retain any fluid so then to discover whether I can train it to release in a routine. If it retains and doesn’t let go I’ll have to be trained to self catheterise.
If I wet myself then they need to look at possibly another type of catheter.

To be perfectly honest it all terrifies me and I don’t know what to think or feel.

My emotions are totally shot to pieces.
I’m desperately missing my boys and hubby and knowing my role with them has changed has really upset me. 
The tipping point came on Tuesday.
Lewis was lying on my bed and I was playing with his hands and tickling him whilst I was sat in my wheelchair.
He had a typical Lewis moment and started to Reflux and be sick. In that split second I realised just what I cannot do now. I wasn’t able to calm him, suction him – I couldn’t do anything to help him.

I felt sick knowing that my role has changed so much.

I hate it!

SN Mum

Posted from WordPress for Android

Comments

2 responses to “A Week Of Emotions and Realisations”

  1. Raisie Bay (@okesanne) avatar
    Raisie Bay (@okesanne)

    It’s so tough accepting that you can’t do things like before, it hits you even more when you get home. Your family have been coping without you and they will continue to do so until you are ready, stay positive that that day will come, you just need to be patient. That’s the hardest thing, patience, but it’s something you have learn. As for for bladder control, it can be learnt. I was releasing in routine and didn’t have any major accidents, I seem to be having more since I started to feel my bladder!! It’s OK to feel low, you can’t be upbeat all the time, especially when something so awful is happening to you that you have no control over. Have those sad days then just focus on those you love and those that love you and stay hopeful for better times. Thinking of you my TM buddy…. We’ll beat this!!

    Like

    Reply
  2. Heidi Peaster avatar
    Heidi Peaster

    just caught up on your blog and really don’t know what to say! To say all this is not fair is an understatement, but i know you know that. It just all makes me despairingly angry. Then, what do we do with that?
    “We”….that’s a laugh. It’s not “we” at all….I am here at home. After the anger, the unfairness…then what? You do what you are doing, sweetie. You are doing it. You are doing what a mother does. You are working for your kids, your husband, you life…for you. Because you have to…it’s what you do.
    But, let me tell you; not all mothers would do that! They would just be there where you are and let everything go…and be angry forever. But you are not. You are you.
    None of what I said makes sense! But you are a warrior, in an almost impossible situation and you are outfitted for the battle. The battle is the Lord’s and you are grabbing the weapons He is giving you to fight it. That’s why you will get through it and come out the other side. Not you and me…”We”…but you and Him.
    I love you, hon….keeping fighting. You have many others fighting with you

    Like

    Reply

Leave a comment

More posts