A sight for sore eyes

Like a small child dressing themselves I now tend to wear what I want when I want. You might see a toddler in a supermarket wearing fancy dress. I haven’t quite taken it that far…yet. According to my family and friends my dress sense has always been questionable but things are more unusual than ever since I became ill. I now don’t see the point in saving things for ‘best’ or for my days out. If I want to wear a nice dress around the house, I will wear a nice dress around the house. Being so poorly and with such a complicated illness means I don’t get out much. If I saved all my nice clothes and favourite outfits for the big wide world they may never get worn. What a waste! Who cares if they don’t match! It’s not like I’m going anywhere…usually. Jewellery can be uncomfortable for me now and my arms don’t feel strong enough to fiddle around putting a necklace on, but on my better days I can be found with a ring on nearly every finger to make up for the all the days I was unable to wear them. Think Phoebe from Friends…

There were times when I had to be dressed by my mum or my sister. It makes me a bit sad to think about it. Thankfully these days I only tend to need people to help me do my laces up sometimes. Laces can be a bugger! All that bending your legs, crouching, leaning forward, putting your head down, stretching your arms, using your fingers…I’d be in a heap before I’d even stepped out of the door!


I usually resemble a mismatched mess with uncoordinated ensembles. I use what little energy I have putting the clothes on, rather than worrying if an outfit ‘goes’. But like Marilyn Monroe said, “If you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.” Take me as I am, or not at all. Illness has changed me. I am too poorly to faff around with make up. On the days I might manage to put it on, the exertion will inevitably make me too poorly to take it off. Sometimes I paint my nails for that added bit of glamour. Ha! I have to be careful though as M.E. has made me intolerable to many smells and nail varnish is one of them.


Comfort, now, is paramount. I can’t quite describe it but I feel too out-of-sorts to be dressed in anything uncomfy. Leggings are a must and for the days when I don’t have enough energy to put them on, jogging bottoms it is. I always try to get changed out of my pjs in the attempt to remind my brain that daytime is not for sleeping. This is just not possibly sometimes though and few things are now more exciting than a new pair of snazzy pjs!


Layers, too, are essential. I can’t always regulate or control my own temperature because of my broken brain. Because of this I ‘layer it up’ starting with a vest (yes like we had when we were children.) Cardigans are better than jumpers. They seem to not take as much energy in putting them on and they’re easier for people to help me out of if I am hit by a sudden heat wave and need to cool down NOW.


So if you see a twenty-something woman shuffling around looking worse for wear in the most unusual of outfits, it may well be me!

Lovely, lovely people

I told you I had wonderful family and friends! My brother and his friends (well just his friends in the end as he injured his knee) ran the Robin Hood half marathon at the end of September. I was overwhelmed that they ran it for the ME Association with me and my friends in mind. It meant more than I can put into words. The money is still rolling in and we haven’t added up the offline donations yet. Thank you to everyone who sponsored them. I know everybody has their own charities and causes that they like to support so it means even more that you chose to support my cause; the ME Association. If you’re reading this boys, thank you from the bottom of my heart. ❤ 

http://www.justgiving.com/teams/Cool-runnings

Patience is a virtue

When I was seen by the CFS clinic we were given notes to read that covered everything we’d learnt in the group sessions. Everything was typed up for us so we didn’t have to take notes ourselves. This saved us a lot of energy and we were able to concentrate solely on sitting and listening. We had the notes for reference when we got home as we would have most probably forgotten what we had covered because of our memory problems. Many of us though were unable to read through the notes properly. We had used up our energy travelling to the sessions, sitting in an unfamiliar chair, listening to voices louder than we were used to, the hustle and bustle of everyday life, coping with brighter lights than we could cope with, adjusting to temperatures we were unused to…

We were too poorly. As my vision is affected by my M.E. I also have to contend with the words and pages being out of focus and looking like they are swimming…fun fun fun! But I still have those notes for reference and now, although I cannot read more than a page at a time usually, I am able to flick through them when I feel I need some guidance.


For months and months and months I had a go at sudoku to kick start my brain into working properly and to improve my concentration. It was hard. Very hard. To start with I couldn’t even look at the puzzle without my brain having a hissy fit. Then it took my hours to complete a puzzle because I needed ‘purple time’ every couple of minutes. I can now finish a puzzle in just a few minutes. I have carefully retrained my brain.


My concentration levels have improved enough that I can read books again sometimes. Yay!


I have always been a reader and so it is lovely to be able to get lost in a book from time to time. I read rubbish mostly…romantic, chick-lit stuff. I would like to be able to read a few history books again because I’m a geek like that…something to aim for. 


Simple pleasures

I have always been easily pleased. My favourite Christmas presents are always Christmas socks! I wouldn’t say I have expensive taste or like fancy food. Diamonds just don’t do it for me.

I think being this way stood me in good stead for ‘The M.E. Years’. Since being ill it has become even more important to smile about the little, simpler things in life. Illness has given me the opportunity to look at things a completely different way and appreciate them much more. A different perspective. This year, for perhaps the first time ever, I was aware of the leaves turning orange and red as Summer ended and Autumn began. Before, I never really took much notice of the changing seasons. It took only two weeks for the cherry tree across the road to change colour completely.


As I see things, I am going through a life changing experience. Not many people get to have one of those…


Blossom and blue skies



Tightrope

One of the trickiest things is not overdoing it on the days when you feel a little bit more alive. I must avoid the ‘boom and bust’ cycle. It is so hard not to go ‘all out’ on the days when you seem to have a little bit more energy and do the things you have been unable to do for so long.

Today I desperately wanted to try to bake a cake. I have been craving cake all week and now that there is gluten-free flour in the house it seemed the ideal time to do it. But I knew I was ‘on the edge’. I have to be careful not to overdo it, even though I felt like I could do it at the time. This week has already been ‘busy’ for me with spending more time on my laptop than usual because I started this blog. I had to reign myself in. When you have M.E. you have to do this a lot. You have to be regimented. I have to do this when I see my friends. I would love to stay out and see them for hours on end and I desperately want to, but I can’t. I mustn’t. I mustn’t get ahead of myself. Doing too much is not good. Running on adrenaline is not good either. The aftermath is not pleasant! Adrenaline knocks me for six! I find it hard to know when I am running on adrenaline but today I think I spotted it and so stopped before I got ahead of myself. I have had to learn to be patient. My cake will have to wait. Perhaps somebody would like to make it for me? 😉 The flour is ready on the side in the kitchen waiting for you…