Saturday, 30 June 2012

Allergies !!!

A word that encourages spreading of said affliction, so won't mention it more than a couple of times. Allergies- there, that should do!
Many ME patients have various sensitivities arising throughout the course of the illness. I didn't have that many occur that hadn't been diagnosed before my initial virus. I am sensitive to orange food colouring- my Mum realised this when I was a child and it has not really bothered me so it's just a tale of inflated, itchy cheeks that I can boast about at a party.
I have had light sensitivity to the point of arguing about the curtain being open 2 or 3 inches rather than 4! Noise sensitivity-I used to read subtitles on television rather than listening to it. Also over the last 20-odd years my skin has become more and now less aware of which soaps, shampoos, laundry powder etc. I use. I am actually sitting now in a wool cardigan over a short sleeved t-shirt-unheard of for me, for at least 15years. I would have come out in a rash before you know it.
I do have hay-fever. This year more than most and uncannily at a different time of year. If you are a UK dweller you will know how interrupted the seasons can become and this year has been strange as ever. My affliction didn't start as usual with tree pollen and spring flowers such as wisteria and cherry blossom. There was so much rain it all seemed to wash away and I was laughing. Until the grass season came into effect a couple of weeks ago- which seemed to be early, for no apparent reason. Some days I can walk around the garden without a care in the world but then others I am sneezing as soon as I wake and wonder what on earth is happening; eyes feel as if they are out on stalks; sinuses ache and ache; ears feel bunged up too and the runny nose seems to be going as fast as the Jamaican sprint relay team. The best form of therapy for this is distraction, as with so many other symptoms. I keep a tissue or hankie at hand and deal with any ablutions when I need to!
I'm not sure I have had many others. The problems with digestion comes up again and again with ME patients and yes, when you go to restaurants or possibly even eat with family at a wedding etc. you need to make it clear that you can't eat certain foods. By saying you have an allergy it is sometimes easier to get the point across and the issue is taken more seriously. I don't consider just having an aversion to digesting dairy or wheat for a while a specific diagnosis, it is just a bit of a pain and I have been able to come back to them in small amounts as my health has improved. My advice would be don't give yourself labels unless you have solid proof that you are going to need paramedic attention, or weeks of self-medication, by eating a peanut, sesame seed or piece of cheese.

Friday, 29 June 2012

Monthly Achievements, Again

Another list, this time brought together over the month.

I dug up some weeds for about five minutes. They were tall but had really short roots and just required a large fork- so no bending!
Two weeks later I took out the hand held loppers and attacked a Dogwood tree by our front path and some Snowberry by the front gate. Again it took less than 10 minutes and my husband cleared up after me, when he came back from work (useful aren't they!!!)

Began to tidy up our spare room, which we call the music room as it contains the piano, my flutes and all my music. It will also contain my OH's vinyl collection (over 1000 12" singles and albums). This task has so far taken the last four weeks with the help of my Mum, our cleaner Helen (bless her thoroughness) and IKEA's delivery service!!! Boxes and piles of sorting were put on the living room floor and occasionally on the bed for me to sit and wade through. But it is great to have the energy to do that and to sit on my heels on the floor for an hour with the shredder whirring in front of me is particularly cleansing.

Reading more, when I choose to and without dire consequences; I have finished a few books this month. As I used to do when I was a child, I have a few books running in tandem and pick up which ever book meets my mood. However it now takes me weeks or months to get through some books, at the age of 8,9! 10, I was reading each book in about 3 days!

Yoga class in the garden, using the iPad and various mats, blankets and bolsters on the grass. I have downloaded a few free classes from iTunes, perfect for beginners and thanks to a couple of good teachers I know I can sit back or lie down, or even adapt a few minutes, if I know particular poses are going to be too much. I have loved doing this in the garden a few times, hopefully as the summer moves on I can do this more often. This is also a great place for lying and doing yoga meditations-see my sunbathing post! (link)

I am loving my own space. As much as I would like to be a social thirty-something again, I remember now how much I love walking by myself, in solitude, with no sounds but my feet crunching and birds singing (I will content myself with sitting or lying in the garden for now and dream of the walking!). Time to myself indoors with nothing happening is bliss too. And I'm not straight on my own case when a day goes by and I don't achieve anything mind-blowing.

So another month, more little things happening. I have been told that I might be surprised at how little change there is in the first 6months and then how much change there is in the second 6months; I will wait with baited, but calm and steady, breath.

Thursday, 28 June 2012

The Ladder of Health

Yes, a ladder.

I started using this analogy last year and it has grown into something quite profound. I want to share it with you.
I crashed two years ago. I went to bed. I had no choice. I could barely move some days. My body gave up, but I didn't!
I listened and said, "OK, you win" I'll give you a few weeks, check some blood tests and see what happens. It had been starting to flail in January, I had actually gone to my doctor and complained of feeling more tired! Not just tired, more tired! There is a difference, as I am sure many of you will know.
So at this point if I had the ladder I would have said to myself,
"do you need to sit on your current step for a while or go down a step?"
I didn't realise that I needed to go down a step, off-load some of my responsibilities and give myself a break.
By the summer I had been falling down the steps, without realising it. Not really listening... pushing, doing what I expected myself to do; keep going, strive and you will succeed. I wanted to have a slightly interesting life. I accepted I was ill, just wanted a little piece of the social cake- a slice of life outside the home. I was careful, made sacrifices left, right and centre, but did not purposefully take that step back by my own choosing.
So by doing all this, my body made the decision. It pushed me off the ladder and told me to sit on the floor for a while. I kept getting up and it kept pushing me back off, for about 18 months in cycles of 3-6 months, I was constantly doing and flailing, doing and flailing. Stepping up the ladder too soon, only to fall back onto the floor.
Last November something happened. OH and I decided that we had to come first. Our needs above everyone else's and for the time being most of my needs over his.
I stepped back onto the floor and happily sat down. What a relief that was. To make the decision myself!
Christmas was the best we had ever had. I was ill- yes I was ill. We were smiling to jaw-breaking standards. Family and friends who didn't understand were laughably annoying. But friends and family who did understand suddenly came out of the wood-work and switched on the light. We had support we didn't know was there.
Even Olympic athletes have to step back occasionally; a ham-string injury or twisted ankle might take them out of full capacity training for a couple of weeks and who is likely to ever reach the top of the ladder? The idea is not to aim for the top, but to reach your comfortable step, sit down happily and be yourself. I reckon I'm on the first step, I've tested the second step a few times in the last couple of months and know it's not quite strong enough for me yet. I will wait until it is, as the last thing I want is to be pushed back to the floor and have to do time there again.

Wednesday, 27 June 2012

Eleven questions AKA MeMe

This is slightly off-topic, but actually shows my willingness to involve myself in the day-to-day life of socialising and "getting out there" again. As the days go by, I feel more able to integrate into the big wide world again, it has to be slow and as the days go by I will be more able some days than others.
I have to answer eleven questions and then nominate some other bloggers to answer mine which I will set at the end of the post.
Here goes... questions from Recipe Junkie

Here are my ELEVEN meme answers...

Wham or Frankie Goes to Hollywood?
Frankie was way out there, but I can't let go of the Christmas blues - Last Christmas, I gave you my heart.... I have to see the video every year on 4Music now, it is as close to my heart and slightly cheesy as watching the Christmassy films Holiday and Love Actually.

Dog or Cat? Never had either, but love neighbour's dogs jumping up with glee to see me and obeying my order to calm down and SIT! Cats can be so soft and furry, but I will never get used to the stink of cat litter or the scratch of claws through the thickest pairs of jeans.

Nigella or Delia?
Delia, hands down. My culinary teacher and what a kitchen she had in the eighties! I love her Complete Illustrated Cookery Course and it has the privileged home in my kitchen with The Dairy Book of Home Cookery and Muffins; all my others are in the living room where we have more cupboard space.

Silent Witness or CSI?
Never watched Neither!!!

Thomas Cook or Internet?
Internet

TV or Radio?
Radio

London or Paris?
Can't find Covent Garden, the Hayward or Coulthard Galleries in Paris! All a walkable distance from Waterloo station and the Hayward is the perfect hideout if I have 15 minutes to spare before I definitely need to buy a coffee on the station!

If you could choose any 6 people to come for dinner with you (living or dead) who would you choose and why?
Sigmund Freud, he could analyse all the guests.
Stephen Fry, he has some amazing name-dropping skills, as seen on QI, and he could tell us a witty tale or two after dessert.
Eliza Dolittle, to sing in-between courses.
Renoir, to give us all portraits, or do an oil painting of the whole affair.
Leonardo de Vinci, to do the same, and possibly exclaim at some point during the evening "the iPhone; I invented that in the 18th Century, during my last dinner party!"
My sister, who is great at helping in the kitchen and would keep me sane through all the chaos of having dead people actually in my garden.

What would you cook?
I'm thinking it would be more relaxed(and easier for Freud to start his analysis) if we were in the garden at the height of summer...
Delia's Sausage rolls and home made Dough balls as entrées
Straight into BBQ, Sausage/pepper/onion kebabs, beef burgers, chicken drumsticks, potato wedges, salad- basically finger food
And finally...Triple Chocolate Chocolate (mocha) Chocolate muffins with creamy Yeo Valley vanilla ice cream- had to name-drop there, the most amazing creamy ice cream I have eaten, like, ever !!!

Favourite book when you were a child?
That's not fair- favourite!.. OK, What Katy Did.

Earliest memory?
Viewing what turned out to be our long-term family home at age of three, and being scared by a big, black labrador on the green flowery sofa- I remember the scary bit as I distinctly know I had a viewpoint from behind Daddy's legs!


My ELEVEN questions..

Which is your favourite fruit?
Any weird allergies... go on, you know you want to share?!
Train or Plane, if budget wasn't involved?
Which book did you finished most recently?
And when?- be truthful- last night, or three years ago!
Coffee or tea?
And which options do you go for in a coffee shop, earl grey? latte? hot milk? sugar?
Opera at Royal Albert Hall, or gig at Wembley?
And which one or who?
When writing your blog which words most often need to be repaired by spellchecker?
Have you ever broken anything? (ie. bones in your body, not a plate in the kitchen!)- tell us how.

Now I need to tag some fellow bloggers. As I am new at this lark and haven't actually started reading or following many and most of those that I am following are organisations and businesses, which probably wouldn't want to put this on their company websites,I'm going to start with she who tagged me and follow from there...

Recipe Junkie
Cakes, babies and other ramblings
Sezza Knits

Tuesday, 26 June 2012

Sunbathing- Trauma or Triviality?

When I was about 8 or 9 years of age, whether it was a couple of days, a couple of weeks or, as it seemed to me, the whole summer I'm really not sure, I spent 'the whole summer' walking proudly around with my jeans on, turned up at the hem about 6 or 7 times so they came over my knee. My Mum didn't like it and wanted me to just go and put some shorts on, I thought it was tremendously cool so I refused. This was probably the beginning of my passion for individual fashion. Even now I will wear what I choose and boy did I look individual in college!
Anyway, I digress. So during this summer I found a passion for being brown and freckly. My friend at school had freckles beyond belief and I wanted just as many. It was also around this time that I started to notice how being brown indicated that you were probably rich enough to go to exotic climes and this was a very good thing with school friends in September- lying in the garden would have to make up for this.
So lying in the garden one lazy August afternoon. Mum and Dad were drinking tea and reading the paper and everyone was eating ice cream, it was hot and humid and the idea of shooting around the garden with the bikes in an obstacle course race was definitely off the cards. Instead of lying on my front and reading I was lying on my back with my eyes closed. (unknown for me to be doing nothing, but I decided it was a good idea) This was a bad idea. Not only did we feel lazy- so did the bees!
I screamed
and screamed
and screamed.
I was not a screamer, Mum and Dad knew something was up, I was shaking my leg furiously. I was in pain. The bee didn't stand a chance. I shook my leg so much the sting actually came off the bee and stayed in my leg- so even more screaming when I saw what had happened. My brother searched for the now dead culprit in the brittle, brown, rain-starved grass and Mum searched for tweezers!

I had the sting in a little pot as a souvenir for years. Isn't it crazy what an 8 or 9 years young child will do?
Now after almost 20 years I have started lying in the garden again, I've sat, or lounged in the interim years, always with my eyes open. I'm enjoying the rest, the healing time away from the bed and duvet! I'm even lying directly on the grass and walking around with bare feet occasionally! Ahhh! Maybe when the wasps and bees start wilting in the warmer (maybe I should say later, not warmer!) summer months I will be wearing sandals!
I am fully clothed, that is the big difference- and my trousers aren't rolled up! If I convert to a skirt instead of full length linen trousers I might start being more cautious too...

Monday, 25 June 2012

Sleep

Sleep is an odd thing in those of us with ME. So many have insomnia, some can't stop sleeping, some sleep during the day and lie tossing and turning at night. Finding what is right for you and changing as improvement comes and symptoms lessen is the challenge. When I was severely ill in my late teens I would sleep up to 16 hours a day, from 9pm to 9 am and then a long rest in the afternoon, it seemed ridiculous, but was most definitely necessary.
I have generally managed to avoid insomnia throughout these last 20+ years. Using tricks to adjust my routine and keep me from sleeping too much during the day if a couple of nights are restless. Currently I am managing any daytime sleep during the afternoons, three or four days a week.
I have recently read a book on taking naps- Take A Nap, Change Your Life, by Sara C. Mendick, Ph.D. She has studied sleep patterns like no doctor before her. The idea is to plan naps during the day- be they of 20 minutes or up to 3 hours. There are four stages of sleep and by going through no more than two cycles of these stages during a nap, the body won't go into deep sleep- not a pleasant experience if interrupted from that! During the day the body continues going through it's own circadian rhythm of sleep. We constantly have the power to sleep going through our body and the quality of that sleep can be determined by when during that rhythm you decide to sleep.
I have discovered that a morning nap is sometimes needed and now know the reason why that sometimes needs to be longer for me to wake feeling refreshed. At the beginning of the day more REM (Rapid Eye Movement; highly-active dreaming) sleep is experienced, it is why we are more alert and ready for high-powered meetings and cognitive reasoning in the morning.(it's different for teenagers so don't start telling them to wake up at 6.30 you'll still get grumpiness!) We experience more and more REM sleep as the night wears on and if you don't use an alarm you will wake up naturally after a REM sleep stage and therefore awake, alert and ready to go, rather than during a REM stage and therefore dozy and cross!
In the afternoon an interesting thing occurs- personally I relish this and should try and achieve more of it than I do. As the REM sleep stages diminish, the stages flip in size, and the afternoon nap is one of healing, The healing stage- where growth hormones are fed through the body and repair and rest are given in droves. I have taken on this message and now avoid morning naps even more, keeping myself busy in the morning with sitting in the kitchen- like I am now. I want to go back to bed, but the longer I leave it, the more beneficial it will be for my body. This healing sleep is also something which happens more if you go to sleep earlier and for this reason decided this weekend to start a new sleep regime. My husband and I have always turned the light out at the same time. Usually anytime between 10pm and 12 midnight. This is sometimes dictated by me, sometimes by him. The difficulty has been that he does not need as much sleep as I do (funny that, as I have ME!). So last night I decided to choose a new tack. (no we are not using separate bedrooms!) I would sleep when I decided to, I would follow my needs first and foremost; he would read to me first, then choose to do as much TV watching, reading and radio listening as he liked in different room and come to bed when he chose to Full Stop! This worked last night I didn't switch the TV on once yesterday and the light went off at 10.15pm: the bonus was that I was not tired and grumpy when he woke me by getting up at 6.30am this morning; I was calm and peaceful, bright as a lark and ready to start the day with him by 7am; wonderful. We could interact before he went to work, I could help him fill the dishwasher and he said goodbye before he left at 7.45am without disturbing my cross and grumpy REM sleep. Long may it continue(?)

Sunday, 24 June 2012

Fiction

I do find fiction more difficult to read; it is easier to listen to, as the story can ramble off subject and I can feel resentful when I have read three pages, using my precious energy for no apparent reason!!!
A good way around this landed on my lap by a simple visit to the local charity shop. Reader's Digest publishes multiple books in one. Each one abridged by 100-200 pages, so the story is more concise and the flowery bits are missed out! Put "Of Love and Life, Reader's Digest" in Amazon search and you will find multiple books each of three abridged novels. I have been lucky enough to find them second hand in charity shops, and my Mum and husband look out for them but they are all used from £0.01 with P&P, so certainly worth a try. I don't always read the whole collection just one or two from the three, but it makes it so much easier for my memory. I hope to be able to come back to those once I have read through some of my non-fiction ones.
Another good read with short pieces and easier to follow, is The Time Traveller's Wife. It has become an award winner and you may know of the film, but as the chapters were sometimes short and the scenario of time-travel repeats itself over and over throughout the book, the concept is easy to grasp and therefore easy to read!
Books of letters is another great option. 84 Charing Cross Road tells of the friendship built up between a writer in New York and the manager of a secondhand bookshop in London. The letters are touching, humorous, tearjerking and follow their lives from the late 1930s, through to the 1960s. In the same vein is The Diary of Anne Frank (though maybe more of a tear-jerker) and The Guernsey Potato Peel Pie Society.(these aren't strictly fiction but are certainly not studious self-help books) Also remember Bridget Jones' Diary!
I have been able to listen to a more varied library. OH reads me autobiographies, most recently Stephen Fry's. We've tried reading more complicated tales and larger classics. But if I don't know the story already or it gets too fiddly with detail we have to give up as I just can't follow them. Oliver Twist was one that worked and Watership Down by Richard Adams.
The Sci-Fi category includes Hitch-Hikers Guide To The Galaxy and Stephen King's release from last year about the assassination of John F. Kennedy, 11-22-63. One of King's easier to follow plots, according to my husband who is a big fan.
Children's books are so important. I have recently read Alice's Adventures in Wonderland for the first time and listened to Winnie The Pooh. Reading series of them helps with choosing the next book! The Narnia collection has come back again and again as my husband and I both enjoy them and he has also read me Anne Of Green Gables, Avonlea, The Island, and beyond.
Every Christmas encourages a shared seasonal read in December; One Hundred and One Dalmatians and The Starlight Barking; Box Of Delights; A Christmas Carol; and the Harry Potter books always mention Christmas, so why not!?
Well that should be enough to keep you going!!!