Saturday, 31 October 2015

Happy Days

I'm not sure there are many people in my situation who get asked NOT to do any housework. Instead I am told to spend my precious energy on things that make me happy. There are never any guilt trips about how I'm able to spend my energy on certain things but not on the huge pile of washing up that builds up or on hoovering the house or cleaning the bathroom. I have been incredibly lucky to have such unwavering support from my parents, brothers and sisters, and now my boyfriend as well. 

So after over a year in the making(!!!) I have finally finished my fabric memo board and it has pride of place on the wall! I did have a little help from Popcorn, Delores and Mr Tree Surgeon for the bits that required more strength and energy than I have. 

Ta da! 




Monday, 19 October 2015

Taking stock

At some point along the way I have forgotten how to 'just be'. 

After four years of illness I entered into my first relationship since being ill and I am still learning how to be an M.E. sufferer in a relationship! It's not as straightforward as we sufferers would like. 

Until 2015 my family were solely responsible for my care. They were the only ones who saw me in my everyday, unwashed, greasy-haired state. When Mr Tree Surgeon came along I got up the courage to let him see me like that as well. I've spoken about appearance before here and here, but many will agree with me that this is not the look you'd choose when dating someone new!!!!

So I've been wanting to look nice, or at least look clean(!!!!), but I have also been worrying about him getting bored. And therefore been putting way too much pressure on myself when my health is stressful enough already. I've been fighting feelings of uselessness when he is left doing all of the housework. Of course my family, primarily my mum, have been doing exactly the same as Mr Tree Surgeon is now, but it somehow feels different. It's hard to explain but I know that some of those in the same situation will know what I mean.

I am trying to be and do too many things. I need to give myself permission to be ill. I have not been having proper rest (Purple Time) as much as I should have been. If I'm truly honest with myself the words Boom and Bust come to mind when I look back at some weeks.

I can't stress enough how this is all me putting pressure on myself. It's not coming from anywhere else. I'm not sure there are many people in my situation who get asked NOT to do any housework. Instead I am told to spend my precious energy on things that make me happy. There are never any guilt trips about how I'm able to spend my energy on certain things but not on the huge pile of washing up that builds up or on hoovering the house or cleaning the bathroom. And yet I feel like I SHOULD be pulling my weight. Such a dangerous word for us chronic illness sufferers; should. 

Well enough is enough young lady! The Activity Charts are being dug back out so I can keep track of how I am spending my energy. I have been trying to run before I walk. I have been on enforced bed rest and house arrest for a few days and I am aiming to get back into a proper routine. 


Spreadsheeting
Starting as I mean to go on
The colouring itself counts as activity and can be exhausting for my poor little arm but I'm hoping I get on okay with it 
Colour coding each 15 minute time slot

I am still learning how to not feel guilty about all that I cannot do in this relationship and how to trust that Mr Tree Surgeon really is more than okay with the Anna that I am now. I need to relearn how to just be and to remind myself that I'm chronically ill and that that's nothing to feel guilty about. 

Monday, 12 October 2015

Pet Therapy

For 26 years, every birthday and Christmas I wanted one thing. A pet. Really I wanted a dog but I knew I was pushing my luck. I aimed smaller. A hamster maybe. A rabbit. Anything! My family are not pet people. The answer was always no. Yet every Christmas Eve I secretly held onto the hope that THIS would be the year it'd happen - I'd finally get the pet I always wanted. 

When I became ill it was clear that I was unable to clean out a hamster cage or take a dog for a walk. My parents had enough on their plates looking after me and so I hoped my siblings would say they'd look after a pet for me and I could just cash in all of the cuddles I'd craved. Alas, no. 

Along came Mr Tree Surgeon...

The mega-hutch! Used for only a couple of hours as they have become house guinea pigs...
Meet Popcorn...
...and Delores.
None of us like the noise of the hoover so we hide away together.





Sunday, 4 October 2015

Grit and determination

It's amazing how much it hurts to move my fingers today.

I can feel the muscles in my arms contract and relax and I move each finger. It's hard - like lifting weights at the gym that are that much heavier than you're used to. 

I am incredibly proud of myself for managing to sit up at about 12pm. It took a very long time. Hours even. If I'm sitting up it's easier to stop myself from falling back to sleep. The easy option would have been to not bother and to stay magnetised to my mattress. But that would have meant I could have easily slipped back into sleep again, and I'd already overslept. 

I would have been so easy to sleep the day away today. But my body is confused about what it needs. It does not need sleep. The repairs that happen to every human body during sleep have already been made. My body just doesn't register this fact. It craves more sleep, yet what it needs is rest and kindness. 

I want to cling on to my better routine of sleeping only at night. It somehow makes me feel like I have more control over the intense power of M.E. It allows me better quality of life to be awake during daylight hours. It's just more normal. Although it tends to take me so long to kick into gear that I am at my most 'lively' just before it's time to wind down and go to bed!!! It sounds ridiculous but I often feel I don't have the energy to fall asleep. It's such a battle - to blot out the symptoms and fall asleep. 

This is not to say that those sufferers who sleep during the day are doing it wrong. There is no right or wrong because no two sufferers are affected the same.

While I won't sleep today, I will stay here in bed, but sitting/propped up so that my broken brain can still distinguish between sleep at night and staying awake during the day. At times I will feel too poorly not to be laying down but if and when I can I will sit here and just be.