Being an M.E. mum in a busy world.

Life for kids today can be so busy. School, after school clubs, dancing, sports, rainbows, swimming, parties. There seems to be an endless stream of activities that all the kids in my child's class are doing, but not mine.

I have M.E. because of this just getting my kids to and from school 5 days a week at the normal times is a challenge.

I have never sent my girls to dance classes or after school club, and never even considered any of the other options. Simply because I can't commit to being able to get them there and back every week.
I don't drive, I ride an electric tricycle, which has it's limits for distance, but also I would not want to ride it in the dark which in these winter months rules out anything after school.

It breaks my heart when my eldest receives a party invitation for a school night party as I always have to say no. When the invite comes in we talk about it together and I explain why she can't go, then often it is forgotten until the day, when she comes running out of school so excited saying; "Mum it's so and so's party today am I going" and I have to say no all over again.

My eldest is 5 and personally I feel like she gets enough from school. She is generally exhausted after a day at school and I wouldn't dream of sending her out to do additional courses. But because it's what everyone else does it makes me feel like I'm letting her down.

At home my kids watch a lot of tv. I wish they didn't, I wish I could be more active with them and initiate play, but I can't and I often find tv is the only way to instil order. Though it also makes them feel like they have a right to watch it all the time, which is a battle!

At the end of each weekend I often wonder if we have done enough. Other children go back to school Monday with exciting tales of outings, clubs, experiences. I often wonder what mine go back saying... I had a wonderful weekend, I helped to dust the house, washed daddy's car and watched Chitty chitty bang bang for the millionth time...
We do go out occasionally on the weekend, but usually only out of necessity, a trip to the shops or the library.

When school holidays come around I try to have a certain number of activities planned, often art and craft ones. If I enter the holidays with no plans then by the end of the first day both me and the children are tearing our hair out! There has to be a plan, no matter how basic. Sometimes these plans to awry. They can get through every activity planned for the day by 9am, or not show any interest in what I thought was a great idea.

But when you have M.E. Sometimes it doesn't matter how good the plan is, you just can't do it.

Anyway, I'm not entirely sure what I was trying to achieve with this post, other than pointing out the guilt I feel as a parent. Though I do know I should not feel guilty, I do my best for my kids and that is all they need.

Sensitivities

Sensitivities are funny things, even funnier when you have M.E.

As far as I can remember nothing has ever really bothered me - oh apart from the smell of birds eye southern fried chicken when I was pregnant!

These days I suffer with a whole new world of sensitivities.
The common ones with M.E. are bright sunlight, loud noise, strong smells.

This means when it's bright out, or even when it's fairly dull sunglasses need to be worn. Not because our eyes will explode, or we will melt in the sun, but just because it's irritating, or painful to be out in the brightness without them.

Loud noise I can cope with if it is in my control, i.e. my music, tv, etc. I can even cope with my loud children a lot of the time. What I struggle with is other people's music, or a collection of noise. So my kids playing the demo on their keyboard while both running around the house screaming at full volume, with other music playing on other devices at the same time I find a bit too much. (As would most sane people!)

Smells don't bother me too much, except for that southern fried chicken, which either makes me hungry, or feel sick!

But I have a few more odd sensitivities...

I've always favoured baggy t-shirts and shorts over anything more lady like anyway, but these days wearing anything tailored, fitted, restricted in any way I find - now here I'm not sure which word describes it best so I shall use - irritating. If you pop by my house at any time of the day the chances are I will be wearing pj bottoms and a baggy tshirt. This is not because I am lazy and can't be bothered to dress properly, this is just what I am comfortable wearing. I do don jeans when I have to go out, I know society seems to have gotten quite lax on pjs being worn in public, but I am not there yet.

Jewellery is also an odd one for me. In my teens for years I wore a cotton friendship band, never took it off. Then one day after being struck down with M.E. I just had to get that band off, right then, it had to go.
In my adult life I always wore earrings, 2 sets in each ear, never took them out, until this relapse. All of a sudden one night I just had to take them out or I wouldn't be able to sleep. I haven't been able to put them back in since. I can wear the odd item for a short while, for an occasion, but I am always conscious of them being there, and very happy when I can take them off again.

The last one I can think of is my hair. I have short boyish hair. Never got on with it being long. I used to have it cut regularly every month when I was younger. At the time I had it spiky and if it wasn't cut that often it wouldn't style right. These days I try to have it cut every 6 weeks, but this is more relaxed through the winter as it doesn't bother me so much. But this time it has been about 14 weeks since having it cut and it is driving me mad. I don't care what it looks like (though i've been told it looks good), but it just irritates me. I don't know why, which is why I put it down to yet another sensitivity. If I could pull off short clippered hair then that is what I would do. But I know without trying that it would not suit me, though I often threaten it! - and yes I do hold onto that tiny bit of vanity, despite all other appearances.

I think all of these sensitivities vary depending on how bad my M.E. is at the time. My hair has been bugging me a lot lately, and I have been particularly unwell, which in turn is one of the reasons I haven't been able to have it cut.

50 things I love...

Here in no particular order are 50 things that I love
- please note I haven't forgotten my family but think they would need a list of their own.

1. Chocolate (Cadbury or thorntons)
2. New socks
3, Toast with butter
4, snuggly jumpers
5. Cosy slippers
6. Pjs
7. Being connected to the world
8. Music
9. Making pretty things
10. Sleep
11. Cuddles
12. Ice cream
13. Walking (before I was ill)
14. Doodling
15. Giving gifts
16. Receiving gifts
17. Dancing
18. The beach/being near the sea
19. The sunshine
20. Warm but not too hot weather
21. Listening to the rain
22. Chapstick lipbalm
23. The smell of freshly cut grass
24. Keema with pilau rice & naan bread (without dietary restrictions)
25. Showers
26. Watching neighbours
27. An uncluttered house
28. The colour blue
29. The colour purple
30. My tablet computer
31. Audio books
32. Tombolas - even though I never win the thing I want
33. Parcels in the post
34. Scratch cards
35. Free prize draws (though I never win the big ones)
36. Helping people out - even when it's not the best thing for me
37. Bailey's with plenty of ice & perhaps a dash of cointrau
38. Soft slightly warmed hot cross buns
39. Actually having energy to do stuff without payback
40. Good feedback on my work
41. Holidays
42. My big spider tea cup
43. The right flavour teas at the right time of day.
44. Shopping for anything other than clothes
45. Finishing projects
46. Clean bedsheets fresh off the line
47. Randomly chatting with my online friends
48. People knowing what I want without me having to ask (I hate asking for things)
49. Looking at clouds
50. Pretty sun sets

Sometimes I think it is important to think about the things in your life that make you happy and make that list!

What would be on yours?

Birthday!

A lot of people don't like birthdays, some pretend they aren't happening, some get utterly miserable at the thought of being another year older. 

I like birthdays. It is proof that I have survived another year which I think is something to celebrate, especially with M.E. 

When every day is a struggle having a birthday is like getting a medal for getting through that year!

Being 30 is really no different from 29. This year I had my party back in November so as not to risk snow & post holiday blues from stopping people coming, I had all of my presents either back with the party or at Christmas, so today there are only a couple of cards to open, but I am happy, I have my family around me and I am a lot healthier than I was last January!

My grandfather turned 94 on Christmas Day. His take on old age is "Don't do it".

I can appreciate this. Getting old often isn't dignified, and for someone as independent and strong willed as him it must be incredibly frustrating.

- Much like having M.E. is at times.

Anyway enough of my chatter - must get back to my noisy children for extra birthday cuddles!