Mummy will your M.E ever go?

My daughter is exactly 6 & a half today which is something to smile about but this morning my heart broke a little bit. We were having a snuggle for 5 minutes before she got ready for school & out of the blue she asked me if my M.E will ever go. I told her I didn't know but that I hoped so & she told me she hates it as I can't do much with her or go out to many places & it isn't fair. Ouch.

As you may know I try to remain cheerful & try to be positive despite everything, but it totally got me & although I tried to give her some reassurance I had tears streaming down my face. I told her the stuff we do together is still nice & that this is just how it is. She said she just wishes we could do more stuff together. I couldn't agree more.

I said we would have a chat after school & write a list of some of the things we could try to do. My carer took her to school for me & the tears flowed. It isn't fair, she's so right. The pangs of envy towards other people who can do "normal" stuff are always there. I think that's understandable when you have so many restrictions & wish you could do the stuff you always took for granted.

I get so wiped out so quickly that when we go out I may not be up to driving back. Safety has to be a priority & obviously with such poor mobility I can't really walk anywhere either.

I usually have a carer with me when my husband is working & they collect my daughter from school so I am up to doing stuff with her rather than being too wrecked from the school run. However today when my carer came she was really unwell so I sent her home. The exclusive mummy time my little girl had said she wanted was happening quicker than I had planned!

I had promised her yesterday that we could bake & she never forgets stuff so it was the first thing she asked. As she can pretty much do it herself now I got everything out & she did all the work! Apart from a few bits like putting them in the oven, she did such a good job.

The finished results made her (& me) so proud! They tasted delicious too :)

After the baking I felt really tired so I had a lay down on the sofa & little Miss watched tv while she ate her tea. Then she joined me & we snuggled. My mum popped in after work & helped her have a shower so I had a quick rest.

I decided it was time for the chat & we started writing a list of things we could do. A few ideas we had were going for a hot chocolate at a local café, an ice cream at our favourite Italian deli, finding out about hiring a scooter at the park & going for a ride! Conker picking, finding leaves to do Autumn craft stuff with & going to a park to draw pictures. She also asked if we could go & watch a show at the theatre so if we do that I will have to have someone with us to push the wheelchair but I think it would be something we'd definitely both look forward to.

I am going to do a treasure hunt on our street too. I haven't told her about that one yet but I know she will love it.

I asked her what the main thing that she wanted was from what she had told me this morning & she said just to spend more time with me on her own. She said (& it really made me laugh) that because her daddy takes her out and about a lot that it's/he's a bit annoying!! She said it doesn't mean she doesn't like him, just that she wants to spend time doing stuff with me too. Bless her!!

I feel the same as she does & our afternoon today made me realise I'm not as useless as I sometimes feel.

If anyone has any suggestions for stuff we could do please leave them in the comments.

Thanks for reading :)


Ali 
xx