MamaDeanoMusings: March 2014

Thursday, 13 March 2014

Thinkings.

Not very often, but occasionally, I get quite cross/mad/irate, however you want to label, those feelings of utter frustration and powerlessness about a situation.

Whenever you read something about CFS/ME it is usually about 'managing' it, and rarely about a 'cure'.

This sucks.

Over the past ten years, I have become a bit of a pro at managing CFS……which is great, but also not, at the same time.

It confuses me how my body can have such little energy. At the moment it has a whole lot more than it has in times gone by, but there is no certainty that it will remain this way.

Yes I am doing 'well', life is pretty good, but it's all due to a lot of careful planning, timetabling, and pacing.

I can't climb a mountain ( or even a hill ! )…..
I can't swim for more than a length at a real push….
I can't walk more than about 400 meters…..
I can't spend a whole day socialising…….
I can't go to a church conference….
I can't go out in the morning with my family and then stay up and alert in the afternoon too…..
I can't go out in the evening more than about once a month.
I can't commit to anything, as I don't know If I will manage it on the day.

I don't usually list these things, as it's not the most positive way to 'manage' CFS, but sometimes it does me good to stare CFS in the face, and see all it takes from me.

I would LOVE to be fully better, fully well, tired like any other parent of two small kids, but not to the point of exhaustion.

So many thoughts have to go into planning a trip….can we park nearby? will there be seat to sit on,………..

I guess I could do most of those things on the list above, but would spend a week in bed recovering.

The thing I find the hardest to deal with, is the mental fatigue. When spending time with other people, which I really enjoy, I just kind of run out, run out of energy to think and talk. I can do it, but then I need lots of recovery time afterwards.

There has to be a reason, for it.

I refuse to believe that there isn't.

So there they are, the thoughts which I usually hide in the back of my mind, safely tucked away. Preventing them from eating away at my positivity, and enjoyment of life.

As, most of the time, I really do love my life. I have two beautiful healthy kids, a husband who is healthy and with me.

This year I celebrate my parents 60th birthdays…….amazingly rich am I.

It's pretty great.

But if the CFS monster could get lost, I would be glad.

Ten on Tuesday

1. I hear there are some parents who manage to dress their kids in matching socks EVERY day, and have well hoovered cars. I aspire to such dizzy heights. Our car has it's own micro system, largely started by rice cakes and bread sticks.

2. The sun has come out...it's spring. THANK GOD.

3. My boy mostly says 'this' or 'see'....think I need to start using some more useful words to add to his vocabulary.

4. 2- 4pm.....I dislike those hours. Give me 10am every time.

5. At the moment this is our favourite book..... So funny and is a book long poem, love it.

6. If I was ever to do a PHD it would be research into where socks and teaspoons go. WHERE ARE THEY ALL ?

7. It's 1pm and I need to think of something to do this afternoon. I have had lots of offers from lovely friends of company, but today I lack the energy to hurd/police/play with my small kids whilst simultaneously talking to someone else, so we are going it alone.

Daddy had a breakfast meeting and one after work too, so it could be a loooong one.

8. Most days we watch Balamory, and every time I look at 'Miss Hooly' and want to climb into the television and give her a restyle. Just call me the fashion police.

9. World book day - more like 'world dressing up day'......nuff said.

10. I'm thinking give it another week or so and I will be wearing my flip flops - 'FREE THE FEET'....

I like to think my feet will look like this