I Am Just Not Sure?

Last week I had my blood test, to see if I have this JC virus.

All this waiting makes me so unsure as to what I want for the future. 

Do I want to be on tysabri?

Why don’t I try the others first?

I have become very good at putting on a front, however there are parts of the day I find myself staring, blankly.

My new tablets for my back are great, they really do work, well that’s if I take them. If I miss one of my three a day I get all edgy and short fused.

They have also has an effect on my mood, I feel down, more tired and a little lost.

Having MS is one of those things no-one can understand until they have it, all the books might say I need to keep going but why can’t I just have a day? A day to rest and a day to not be okay.

Twice last week when someone asked me if I was okay, I said fine then inside my mind was shouting “LIAR LIAR” however no-one wants to hear how you really feel when they ask you that, especially when they don’t really give a shit.

I keep forgetting what I am saying and doing, tonight I even put talc in Pop’s hair when drying her, I completely forgot what I was actually doing.

Talc is surprisingly hard to get out of hair I have to say!

My mind is a mess and I know it. 

Only I know it.

Well, now you do I guess?

Putting on a face has made me tired, so I feel an early night might be on the cards.

Note to self, take tablet.

What was I doing?……….

4 thoughts on “I Am Just Not Sure?

  1. Hang in there! Who says you can’t take a day and just let your frustractions out? After all tears aren’t a sign of weakness they’re a sign you’ve been strong for too long! I can’t speak from an ms perspective, but I have an epileptic child who struggles in school and doesn’t really understand her epilepsy! Some days it weighs on me heavily and other days… we’ll I just have to have faith in myself and in her! I’m sure you’re a good mom and you probably pick yourself Part much like myself! Know that you are a strong woman and you’ve got this! So today didn’t go to well, but not every day will be a bad day! I think everyone has a struggle of some kind some are just better at hiding it than others! x

    1. Thank you. I hope she is okay, I don’t understand mine at times and I am a grown adult. Couldn’t imagine what she is going through.
      I find being a mum its hard to fall apart, however sometimes it really is needed.
      Thank you for being so lovely x

  2. I have Stage 4 gastro cancer and reading your post made me feel like you were writing down exactly what I was just thinking and feeling.

    Now, I’m in NO WAY comparing the two diseases or saying that I know how you feel or anything but a lot of the stuff you said just really HIT HOME for me. I don’t want to be this sick at my age (just above 30) and I don’t want myself and my husband to have to go through this, but it is what it is and we deal with life day-by-day. I guess we are lucky that we don’t have little ones that we have to worry with, and I so wish I could be closer to give you the hug you need and the permission to feel how you feel, when you want to feel it and be damned with the rest of it.

    It seems only fair to me that if we have to be sick 365 days a year that we should be able to take a day or two now and then and call in “just too emotional to exist”. Ha ha.

    Best to you and yours,

    1. That comment made me smile and teary in the same instance! I really do need a ‘just to emotional to exist day’ Thank you so much, its hard when people around you dont mentally understand as much as you like them too. Thank you so much, means more than you think xxxxxxxx

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