Walking Boundaries

I cannot emphasise enough how important it is to choose the right boundaries.
I am learning as the months go by that my recovery has to be decided by me. My physical limitations have to be stretched and pushed... but only so far and within good boundaries.
Where and when I decide to stretch those boundaries is probably just as important too. Going for a walk started with meditations around the garden, then walking, with my husband, where no one knew us, on flat ground, with a wheelchair in the car if I needed it. I wasn't panicking or being overly cautious, I was just aware of my needs and stretched them accordingly.
So where this happened was important. Being in a place where I was unlikely to come across friends was important. Friends can be the most understanding but can also decide to imagine the best and be incredibly positive ("wow you're walking, how about we go shopping together next week, or I bring my children round to see you for the afternoon!"). Also they can start worrying and suggesting the worst ("Why are you walking, you should sit down, do you want to lean on my arm, you are silly for doing this, I could have got you anything you need!").
So positive and negative input could be found, but I had gone out knowing that it was the right time and place to do this. I needed this input from my own head, rather than anyone else's. Also meeting people who want to chat and ask how you are when you're taking steps outside for the first time in many months is not going to help!

When I stretch these boundaries has proved important too. I first walked outside  as described above in a town centre... but late on a Sunday afternoon. Shops were quiet, people traffic was very low and the pedestrianised high street meant that I had no standing and waiting while vehicles went past. I have done the same as I started walking alone from the front door. I was doing walking meditations from my doorstep and short walks around the block now when there is less chance of meeting people.
One mistake I made this morning was walking to the doctor's surgery because I had to. I should have asked for a lift. Doing things because they have to be done at a certain time on a certain day is just not realistic. I know I have to do what my body wants to do, when it wants to do it. And if that means missing out or doing less than I hoped I know it is for the best.
I'm happy to know that I am doing well with my boundaries as they give me the chance to recover at my pace and not anyone else's

How...

do we recover?
This can be a short or long process, an easy or tough process. Everyone is different and no one will go through the same journey towards recovery. Quite simply the body needs to be retaught how to do things and taught to do things without being afraid. Scream at the top of your voice, like Macaulay Culkin in the film Home Alone "I'm not afraid anymore" and you will notice a new confidence.
From there it is all about patience. I have not recovered yet, but I am well on the way. I feel different inside. My heart doesn't beat like a pig's when an unlikely situation occurs. I don't have so much cognitive exhaustion, as my head is clearing out the stress and worry. By practicing meditation, teaching the body to relax I am on the right path. It is almost like soothing a crying baby; when the symptoms appear, I notice them, ask them why they're here and realise something is needed to soothe those symptoms. It is the ability to step back and see the emotions, feelings, as a message from the body that helps the messages relearn. Yoga has taught me a lot of this, from all sides, meditation, mindfulness, postures.
Yes it is a pain to have to go through this process, yes it doesn't work all the time. I get confused and worried, tired and cross. But the more I notice and change the responses consciously, the more the unconscious is learning to have these responses for me.
One example I have for you is the walking meditation I am doing... I have never walked so slowly and so confidently in my life. I take slow steps, feel my legs, my feet stretching into the ground. I feel my spine elongating and rising towards the sky. I notice views and noises that I have not noticed before. It is a short walk, a slow walk and quiet walk (away from traffic and bustle) my body doesn't need to be afraid. This response will be taken, in time, as I walk in other situations and I will be able to walk with steadiness, calmness and confidence further into my life.

So much of what I am writing appears to be about the mind changing the body, but this is about the brain changing the body.  Please note that it is the unconscious brain that is making these decisions. Everyone with ME may have to work with the conscious mind on an intellectual level to recover, to change the brain-body. ME is a physical illness, with physical symptoms and it is the physical responses that need to be healed.

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.

What's Up Doc?

Well Dentist actually! We're going this afternoon. It seems to be that for the last few years every day that we have had dentist appointments that I have been feeling awful and the whole experience wears me out so much I have been ready to burst into tears either in the chair or when I get back to my husband in the waiting room. We never have that much done. Our NHS dentist checks us and usually cleans. Another £35 from our monthly budget and hey-ho!
I must say I am not feeling much better this morning and anticipate a similar scenario at 3.15pm... I have only managed a little yoga in the form of poses this week and that was from the bed before getting up for breakfast. Any other work towards my recovery has been breathing and meditation exercises. Of course they are just as important and I do them every day anyway but it just feels so liberating to be able to move around the floor and give myself something to do.
One thing that my lack of energy hasn't helped this week is our lack of food. I have eaten most of the emergency stash- one lunch time I even had two small yoghurts, toast and jam, a banana and satsuma. I have a shop coming tomorrow, so hopefully our fridge won't be so depleted. I have felt so little like cooking this week my lunches and even breakfasts have been pretty much a mismatch of bits and pieces. I delved into the freezer this morning hoping to find inspiration. With no milk and only a crust of bread I was reluctant to make what would be a very flat tasting porridge or rubbery scrambled egg. I also knew actually cooking an egg was the last thing I wanted to do- I needed food and now! So the result was to not eat the portion of chicken, vegetable and tomato stew which cried at me from the corner of the freezer- I need that for lunch! but instead to finish an expensive and actually not too sugary vanilla ice cream, with a few blueberries, this weeks muffin (I even put it in the microwave for 20 seconds to calm down the shock of the cold ice cream!) and a sprinkling of brazil nuts and walnuts out of the cupboard. Boy, oh, boy will I be pleased to see that delivery van tomorrow!

Update!
Dentist wasn't so bad, I'm stronger by far than I was 7 months ago when we last went and thanks to the new electric toothbrush we saw as a necessity when I was so ill this winter my teeth are even cleaner than before. So no big ordeal and the Where's Wally poster pasted on the ceiling kept me occupied for the worst of it!
As for food, as the dentist appointment went so well I was able to consider a Walk, yes a Walk around Lidl and we stocked up with enough to feed us tonight and also for tomorrow's breakfast. Phew... and...relax...:0)

Call It What You Will...

I am hibernating again. Probably due to last week's Now What? crisis.
Waking up is the most difficult thing. As my eyelids start to fight, (I know it's time to wake up, I'm feeling hungry- they may not quite agree!) my mind realises what is going on. "Oh crikey, one of Those days again. Be positive, stay optimistic, you'll get through, you have before. Why should the rest of the day feel the same as it does now" The problem is that the evidence is there. My limbs are limp. They don't want to move. Getting out of bed is usually an effort, but today is even more so. Without wanting to predict the future and be totally pessimistic a day started like this is unlikely to continue much better. I know if I don't get some kind of routine in before breakfast my day will feel even worse. Usually I have bathroom, dressed, yoga, meditation, breakfast.
This morning to help me out of bed and from the advice of my yoga teacher, I did yoga in bed first. Staying lying down to start with; watching my breathing; then just moving my legs a bit with my breath; sitting up and bending over so my head was lower than my heart and finally stretching out my arms and neck. All with the flow of my breath, so I felt more able to actually remove myself from the bed and get started.
My next thought was to eat breakfast and make it as painless as possible. Muffin, yoghurt and organic decaf coffee (it may not have the kick, but psychologically it tastes the same, so must have the same effect!).
Sitting here at the kitchen table with the iPad and keyboard I am now still feeling limp. My shoulders are slouching, although thanks to all that yoga practice, they are slouching backwards rather than forwards! My neck is having issues with keeping my head upright and my eyelids are still fighting! I have my legs up on another chair, I'm wearing thick socks, other than wearing them and a cardigan I haven't changed out of my pyjamas and have a cushion supporting my lower back. I'm feeling very sorry for myself.
Why am I sitting here rather than in bed? I realise that I must at least prove to myself that I am better than I was 6 months ago. I am typing, that is a big thing. I am sitting in a chair. I am enjoying the view from the kitchen window.
One day this week I will wake up and feel lighter, removing myself from the bed will not be such a hard task and my morning routine will get closer to my ideal. So I need to be kind to myself today, maybe tomorrow, maybe for the rest of the week. Thinking about how long it might last does not help, I have to stay in the moment and fill my time, as much as I can, with comfort- audio books, Pride and Prejudice, Sleepless In Seattle, also knitting and playing patience, if I can. I also intend to ring a couple of friends to fill the time and to hear another voice.- I'm welling up already!

What Do I Do With My Day?

8am Woke up
9am On living room floor practising yoga
9.30am Meditation followed by Breakfast. Blueberry/yoghurt/milk smoothie- thank you Kenwood blender. This concept of eating protein to stave off the blood sugar lows is great, such a simple thing for breakfast will keep me going for hours.
10am Checking emails and typing at Kitchen table, whilst listening to Simon Mayo's Confessions podcast.
11am Just finished talking to a friend, who popped in at 10.40 for a quick chat and "how are you". Also managed 5 minutes lying on the floor after a parcel came in the post- a new yoga bolster pillow. Ideal for putting under the knees to ease the back when lying on the floor. Wonderfully relaxing. Going to do that again now, with a Yoga Nidra meditation, am feeling sleepy...
12pm That was quick! 45minutes of meditation and a ten minute yoga stretch for my tight neck and shoulders. I should probably say that yes I rolled my shoulders and bent my spine over and back, but the fact that I was concentrating on my breath and coinciding the movement with the inhaling and exhaling makes it a yoga 'union' practise. Will check email-expecting something from a friend-, read a bit of pdf leaflet I downloaded about ME.
12.30pm Lunch! I deserve an omelette with bread or toast. My omelettes are very unsophisticated, like a lazy scrambled egg. Break the eggs into the pan after frying up whatever I might choose to add as an extra, then swish them around a bit and leave to cook for a couple of minutes! (Eyes starting to droop!)
1pm finished lunch, yum; put half a tin of wild salmon in the pan before the egg, also swirled a bit of spinach round the pan once the omelette was on the plate. Brilliant menu, most of it completed by sitting at the kitchen table waiting for everything to cook! As it is so cold today- 12th June, WHY!!!- I also had toast instead of bread. (eyes definitely drooping, will wait for OH to ring for our daily lunchtime chat at 1.25 then have a rest) going to find my pyjamas and fill hot water bottles.
2pm managed the chat, change into pyjamas and a bit of a rest, then an unexpected visitor-my brother showed up on my doorstep. It is very difficult to say "no" when you see someone so rarely, so we sat at the kitchen table and my eyes drooped more and more. I was able to hold the conversation together though and was pleased to see him.
2.30pm I have fiddled a little with the Hampshire County Library website and downloaded the second Harry Potter book. Stephen Fry's dulcet tones will keep me company for a while now... To be continued...

The Daily Experiment

It has been a strange week. Good week. Feeling like walking on egg shells constantly. Every day has brought something new, I have been tentative and brave accordingly. A new rule with my husband is that he will never ask me if I want the wheelchair he will always presume that I do; I can make the decision without any pressure. I did a bit of walking last weekend, again no traffic and very few people so I did quite well and judged it well with rests.
I was still feeling, last weekend, the impact from the previous week's hot weather and took a lot of rest time to manage that. My nights were pretty bad, with vivid, running from a tiger, dreams. So waking up for most of the last week has been a relief, but not really akin to a good start to the day. In that respect I have struggled with routines too; barely in the mood to drag myself out of bed, let alone think about following any kind of plan for the day. The Bank Holidays (and whenever OH is at home on a week day) seemed to totally mess me up. It was a struggle everyday, but I managed to convince myself to just float along, enjoying my extra support over that longer weekend and then a chance to have my own space Wednesday and Thursday.
I achieved that 10 minutes in the garden on Wednesday, then made myself a sugar-free cake with carob chips. On Thursday I made biscuits for my husband to take to work, really sugary so will avoid them myself. Both days I slept in the afternoon and managed a short yoga routine and meditations.
On a weekly basis I have been attending live 'webinars' with the founder of the recovery programme I have been using. This week's was about meditation and it really encouraged what I had been finding in the previous days. When I had woken with so little focus and motivation all I could find in meditation was a crazy thought-filled head, going nowhere fast. All I had to do was lie on and let it be busy, prove to the head that the body wasn't going to get involved. We also touched on yoga as an exercise as well as a meditation option. I was very much encouraged to investigate this even more and did a bit of searching for some more DVDs or websites to help me. Finding and getting to a quiet, gentle, beginners class with laying down encouraged is not something I desperately want to attempt. I want something aimed at the fatigued, those in recuperation, who don't do much standing or walking and creak when lifting a tray of biscuits from the oven!
So I found something. A great company in Canada, which has sponsorship and takes donations to put free classes online. They are on iTunes and YouTube, under the umbrella of Namaste Yoga and Dr Melissa West. Three new videos have come out in the last week aimed at absolute beginners and in the back catalogue I have found various breathing and meditation based lessons too. Each session is about an hour, so having done lessons with a teacher and practised a lot more by myself, I was sure they would suit me and I could cope without a personal instructor. Realising how difficult I had found it on previous mornings, I set myself a challenge on Thursday evening; to wake up Friday morning and have a smoothie for breakfast, followed by a morning mini yoga retreat in my living room. I did it. With lying, breathing exercises, meditations and about two half-hours of gentle poses, I did almost three hours with the help of two of these new videos and felt much better as a result.
So each day is a challenge, I just have to keep finding new ways of creatively dealing with them as they try to bite me right back!

Breathing

Why a blog post about breathing?
I'm wondering too and am not sure where to start.
Breathing is something we do. An unconscious reaction. If it becomes a conscious reaction it can be of great benefit.
I did a lot of conscious breathing before I became ill. I played the flute and could hold very long single notes, create long phrases of perfection without taking a sneaky breath in the middle. Swimming was also a big thing for me. I used to love diving underwater and doing two strokes of butterfly, or three strokes of front crawl without breaths in between. I would feel my chest constricted by the volume of the water and watch the bubbles as I gently let the air out as slowly as possible.
Conscious breathing has reappeared in my life recently and is very important. Filling the whole of the diaphragm loosens the stomach, lengthens the breath and leaves a calmer, meditative state. It is a great way to almost control the stress response system. I am sure whenever I was in a bed-bound state these techniques were more important than I realised. I never called them meditation or Yogic breathing I would just lie, listening to calming music or an audio book, breathe slowly and clear my mind of thoughts. Even concentrating on a game of snooker or a cricket match would give me that time of stillness. For years I have followed the idea of breathing in 1,2,3 breathing out 1,2,3,4. Emptying the lungs that little bit more lets the whole body relax.
Now my routine involves yogic breathing (Alternate Nostril Breathing/ Alternate Nostril Exhaling), daily meditations too. Daily meditation began for me, just a couple of weeks before I began the yoga lessons. It was also mentioned in a lot of books and recovery stories as an essential for releasing the automatic stress responses. A lot of free meditation podcasts and guided audios are available online. I found them and choose a few. One of the best was a simple 10 minute guided 7-11 breathing meditation. Very simply, inhaling for a count of 7, pausing and exhaling for a count of 11, pausing and so on. The idea is to slow the count down as the breath relaxes the body and after ten minutes the breath is ready to guide you through a calm and peaceful day. I do this and other breathing techniques when I am just sitting reading a book or eating my dinner, sitting in the car passenger seat listening to the radio. It gives a focus other than the illness and leaves me better able to deal with any frustrations that may come along.