'Just' M.E.

At some point in everyday I think this can't 'just' be M.E. 

It could be when I notice a new symptom, or an old one gets worse, or perhaps just during a low point in the day, but every day without fail this thought will cross my mind.

I don't know of it means I don't believe in M.E. and if I don't believe how could I possibly expect anyone else to, but M.E. is such an open ended diagnosis with so many different symptoms and possibilities. 

M.E. means something different to everyone who suffers from it, to everyone to cares for someone who suffers from it and to anyone else who just happens to hear the term.

I have had many people I've told say "oh yes that's what they used to call yuppie flu." Some sincerely because that's all they know about it, some jokingly obviously because that is how they think of it still.

I put some effort into raising awareness of M.E. I think it is important for everyone to have a vague idea of what it is, and if you know someone with it be able to look a little deeper into it. But the trouble is this illness effects so many people in so many different ways.

I will give an example of 2 people with the same broad diagnosis of M.E.

Person A: is completely bed bound, perhaps paralysed, cannot do anything for themselves, cannot even have bright light in the room.

Person B: works a fairly normal 40 hour week, but gets very tired and sore from this and perhaps then can't socialise and has to rest all weekend.

Both could have exactly the same diagnosis but lead very different lives, and there are an infinite number of variations between those two examples.

This illness needs research, research and more research. 

Everyday when I wonder is this 'just' M.E. it is scary. If I went running to the dr with every new scary symptom I would be labeled a hypochondriac but where do you draw that line? 

I wonder how many people with a diagnosis of M.E. stay clear of the doctors unless absolutely necessary only to find that actually there was something else and they should have gone in ages ago?

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!

Doodles and craft

I run a group called the M.E. Craft Collective over on Facebook. there are about 175 of us at the moment, but we are steadily growing in numbers.

Our health and crafty abilities vary considerably, but it is great fun to show off what we have managed, ask for help and ideas, and be inspired by other peoples work.

I have a friend on there who is mostly bed bound, while there she manages to make some beautiful cards, and recently has started sharing her doodles with us. This inspired me. Doodling was something I did a lot of when I was at school, somewhere in the loft I have homework diaries full of doodles! I used to love it, but realised I hadn't done any doodling in years. So I picked up a pen...

I've become a little addicted over the last few weeks, coming up with ideas and needing to get them down on paper. Even dreaming about the patterns in my sleep.

I am a fan of inspirational quotes and have tried to combine some quotes within my doodles.

I am not good at self promotion, I look at something I've created, especially something drawn and all I see is the faults. I always think there are people out there who can do this stuff so much better than me, perhaps I should leave them too it. But I enjoy it and I have had some lovely feedback recently.

Unfortunately all this doodling has taken it's toll on my weak wrists. I now have pain in my hand and all the way up my arm, so I think I need to take a break from it for a while, which is very hard because once I get into something I like to keep going, but I need to try.

One interesting thing I have noticed is how my brain works differently now to how it did when I used to doodle. In my teens all the doodling was there in my head, the random patterns and designs would just be there, but these days I need to look at pictures for inspiration, the ideas are there, but the patterns are not, it's like I've lost that section of my brain that produces pattern. I don't know if this is down to the M.E or just getting older, but it is odd!

Anyway, here's a link where you can see all of my doodles as they are done www.Facebook com/wonkeycreations

And here are a few of the one's I am most pleased with.

Be the change you want to see in the world

This quote means so much. It is so true.
Everyone complains about the world today, about how people don't have the respect for each other that there used to be, about how everyone is looking out for themselves and not others. Yet at the same time a lot of the people complaining don't go out there and try to change things.

Granted one person can't change the world, but one person can show others how to change which in turn could change the world.

If you go out there today and smile at people, say nice things to them, donate something to a food bank, do a good deed, I guarantee you will feel good and you will have made others feel good. And perhaps just maybe the other people touched on your journey will also go out of their way to make a difference.

There are so many small, simple ways you can change the way you live which will help so many people. Being kind doesn't have to cost anything.

Being ill has made me realise just how lucky I am to be alive, to have a warm safe home for my family, to be able to get out of bed everyday and to know that I can feed my family.

I am a firm believer in random acts of kindness. I have been researching ideas of things to do with my kids through advent, 1 random act of kindness for each day to try to teach my children that giving isn't all about presents and that it can be just as rewarding as receiving. I don't think my 3 year old will understand, but I think it is a valuable lesson for my 5 year old and I hope to turn it into a yearly tradition.

All through this year I have sent out random parcels to people, all with the intention of raising a smile, some items needed, all were appreciated. I have more in the pipeline and hope that these too will be received with a smile.

Could you smile at someome today? Compliment them? Lend a shoulder if they look in need? Could you donate something to a food bank (they are even appealing for presents if you have anything you could re-gift)? Could you donate some old bits and bobs to a charity shop instead of putting them on eBay? Could you volunteer some time to help a neighbour?

So think about it, what could you do today that could change someone else's day or even life?