Detox Doctor Who Style!

Yesterday morning was my third Thai massage appointment. The practitioner also does Indian head massage and reflexology, along with her experience as a yoga teacher. She was drawn to my feet yesterday and found a lot of stress in my lymph nodes and stomach (no surprises there!)
The strange thing I noticed afterwards, about 12.30pm, that I had spots appearing on my chin. They are still present, I can feel them, thankfully they are not particularly visible! sounds like something detestable from a sci-fi movie or Doctor Who! This morning I have also woken up with a runny nose. So the detox has started again. Two weeks ago after my last massage I had spots too, a sore throat for a few days and really achy legs. We discussed this during the session, how we had to slowly push the edge, but not do it so quickly that I collapsed in a heap. My body needs to expel the years of toxins that have built up and I am willing to wait for that to happen slowly. This isn't unusual in ME patients as they find recovery. It has been a regular topic of both the forums I use which are attached to the specialists I use; Ashok Gupta (link) and Secrets to Recovery (link)
Everyone sees it happen at different times and stages of recovery and also at different paces. I'm currently happy with the pace I'm finding, any faster and I'd struggle to continue with my daily routine.
As I write about toxins, thought I'd let you know that I'm having my annual flu jab this week. Thankfully I thought to ring the doctor's surgery before the clinics were announced to the town so my husband (the carer) and I both have appointments at a convenient time! The last time I had a serious flu, 1999, it lasted four or five days and I was struck down with multiple seizures because of the high temperature. It then took me about 3 months to get back on my feet and back to the energy levels I had before the virus hit. I haven't gone a year now without having the annual vaccine and it has lifted a big weight from my shoulders. Definitely recommended.

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.

A Day Off!

This is an interesting piece. Yesterday was my first day without posting a blog page for over three months! and some days I have posted two...
So what happened?
Some weeks I sit and write three, four, or five blog pages at a time. In an hour  I have enough writing capacity to actually do that much. I may have been jotting down titles and thoughts for the previous few days and then it all comes out at once.
For the last few weeks, since we went on holiday, I have not managed that. It has all happened sitting in bed, on the sofa, bits and pieces here and there. Why? I know the energy hasn't been there in quite the same way. I started to walk on holiday and have tried to keep it up. Two or three days a week, since then, I have managed a five minute walk out of doors. This morning I did a five minute walk followed by a sit down, followed by a five minute walk back home. I had been scared to do that before, thinking I might not be able to get up again after sitting down! (so often in the past I have had to rely on others to get me back home after my body failed to achieve it for me!)
So has this been a bad thing or just the only thing that has kept me going?
On the bad side I have not managed much in the form of yoga exercise. I come to the mat and the longer sessions just don't happen like they used to. I am not managing 45-50 minutes session  every day, just maybe once or twice a week. My hope is that I find a steady rhythm that allows me to have regular daily movement, which isn't punctuated by the breakdown, the crash, the disappointment of exhausted days.
This has me confused and wary. When I started the regular activity, after a couple of months of complete rest, at the beginning of the year I was doing 5 minutes every day, which has slowly built up. I'm trying to piece together where I am, how I'm doing and trying to concentrate on the moment to moment improvements, as well as the month to month improvements.
I think the only solution is to wait and see. If nothing has changed in a few weeks time I will know something is going wrong and might stop walking intermittently and concentrate on finding a better flow, or I might notice that the active yoga has improved and the day to day activity flows between walking and yoga asanas quite well.
This is a confusing situation I've found myself in for the last 24 years. Finding a different way round yet again must be a good thing and using the information I now have at my fingertips to guide that, is a good thing. I am trying to recreate the recoveries that have come before me but doing it in a way that is right for me.
Excuse me if I start missing days, if I find I can start using my head and arms for different things other than thinking about and writing blog posts it will be so nice to start doing them and abandon you instead! Be aware I will not leave you, just take a break now and then and probably have some useful insights to tell when I do return.

Oh, Boy!

Yes, oh, boy!
So I've not been writing much these last two days. It's because not a lot is happening. I'm more aware of me. My needs first and all that jazz! If I'm not well enough to do it, it doesn't happen.
Thankfully we had the cleaner round last night. I feel like bowing prostrations to her sometimes! As I was extra tired last week I had no energy to even put things away after I'd used them and some of the bags from holiday are still hanging around waiting for me to devote half an hour to them.
I have been managing a bit of forum chat with the yoga group. Good to know they're out there for me. I've been doing a couple of classes of Qi training. The understanding of Qi is a fascinating world. It is not a faith group but learning how to harness life energy. I certainly need a bit of life energy. So I'm giving it a try.
One book I have been picking up over the last month (it's only about 200 large print pages, so that shows you how long it can take me to read a book!) has helped me understand this more. It is about a Buddhist priest's pilgrimage to South Korea with her Master and senior Master. They climb cliff-edge mountains and wade through typhoons to visit innumerable higher-than-the-clouds monasteries and temples. She learns a lot along the way and realises that all she needs to do is let go and believe in herself. By the end, she "gets" it and her senior Master pronounces her a Master too. The Qi centre, teaches a lot of that too. We don't need to be stressed in life because the energy is there.
A lot of ME is about that. We have to let go and believe that we can recover so that we stop stressing about it so much. By decreasing the mind stress (which helps only to a certain extent!) the body stress can start to heal too. My word there is a lot of body to heal. I hate that my cells are damaged- damn that original virus!!! my muscles still ache if I do a little too strenuous yoga. I get headaches if I don't sleep well or my day has been too busy. I will be able to move on; patience is a big hurdle, it just takes time!

Seeing The Lights

So we have been away. In a familiar place, but a different view from the kitchen window and even more crazy on-street parking. (but that is another tale!)
Lights have come into my line of sight for the last 20-odd years. My Dad always had migraines in the Spring, when he would drive to work with the rising sun facing him, the low blinding light would bring on headaches which would force a shortened day at work and an afternoon and evening in bed. My sister and I both took on this trait, my sister with regular migraines which last for days and myself with seizures and headaches. The medication I take for the epilepsy has helped a great deal but when I find a dark space with fluorescent tubes, low ceilings, "green" natural-light light bulbs or just far too many spotlights in a space with no natural light I can have a reaction pretty quickly. Yesterday I went into a Waterstones book shop. Pretty from the outside, and perfect for wanting to shelter from the rain. It was dark, low shop, in an old building which went a long way back and had a lot of ceiling lights. Most of the front window was taken up with displays and stickers so basically no natural light was getting in. I saw a few children's books and started to flick (through the books, not my hair!). I noticed the books, not the lights at first- I can't start being paranoid about every shop, judging whether I should or shouldn't go in, I would never go anywhere- never leave the house as the sun can give me migraines!
I only realised something was wrong when I felt a choking sensation. My stomach was retching, My head was beginning to spin.
'Now what?' I thought, 'was it the Qi energy massage I had in the morning' surely that was supposed to have the opposite effect!
'Am I too tired, have I over-done it again!'
'LIGHTS'
Get out, find some natural light.
I couldn't see OH, neither could I see anyone who might be able to help.
I moved towards the door and did some heavy breathing. You might be thinking, this can't be an epileptic, if it was, she would have gone down by now and would be convulsing on the floor. All this happened within about 5 seconds and I have the experience now (yucky though that experience has been) to treat the onset of gradual onset seizures differently. With the lights, it takes a while to hit me where it hurts and therefore I have a chance to stop it in it's tracks. My medication also has enough control to serve me well in times like these. After the Qi treatment I found a new inspiration- I had to rid my body of all the negative energy that had built up the the last few minutes. Standing by the door and facing the natural light, I started breathing in through my nose, and taking a long, slow, breath out of my mouth- this wasn't just a long, slow, breath, this was a long, slow, hurricane. I had also learned another Yoga breath the previous evening, which uses only the stomach muscles to control the breath and prevents hyperventilation. It was working. Within about two minutes I was able to speak again and told an assistant that I had epilepsy and needed my husband as I didn't feel well. He was with me in a couple of minutes. I was able to leave the shop, and connect with him by holding his hand, continue the breathing and walking (yes, walking!!!) back to the car.
Looking back, just ten minutes afterwards, I knew I could have collapsed on the floor and just let it happen, but it is the combination of everything I am doing that has helped me deal with this differently. No one was there to panic around me, to say "lie down, let me help you! OMG, what are you doing! I'll call an ambulance!" I had to deal with this myself. And it was the meditation, the yoga, the understanding of how the energy systems work in the body that pulled me through. I used to go into victim mode as I hadn't been given another option. And quite right too. My goodness it was scary and I wouldn't wish it on anyone. It has taken me over 20 years to deal with a seizure like this and from the reaction I was having, if I had decided to let it happen and just fallen on the floor, I could have ended up in a hospital as the seizures would have kept on coming, those lights are invasive and give anyone headaches. I'm just pleased I have found a new confidence from this experience, I'm sure there may well be another full seizure in my life, but I have learned enough now to make them as few and far between as possible!

Out of Breath

Walking up a few steps, bending down and trying to pick something up, walking and carrying something. Why, oh, Why?

I have to be patient but it is so difficult. All the discipline in the world can't help my disappointment. A hug and reassurance helps and I have to just give into the fact that I just can't do some of the smallest things yet.
I was standing at the hob yesterday, turning over chicken breasts as they sizzled away in garlic butter (a great find in the supermarket making the simplest food that little more interesting with very little effort!). Did I stand happily? Did I need help? was my breath calm and unconcerned. Ummm. I was happy, I didn't ask for help, but my breath was here and there. I noticed how difficult it was at times, finding undizziness(interesting word!) and focus.
I put myself through it to find comfort and normality in life. To achieve little things through the day.
Oh boy.
What will I be when I attempt some stairs?(we live in a bungalow) Currently stairs are impossible. A few steps or a slope have me slowing down and out of breath. I need to practice the yoga, do more around the house, but only when I can. Being unable to do such things without loosing the breath is a sign that I need to slow down, give myself time and be patient.
When the breath speeds up and shows me that I need to step back and find focus in doing less or slowing down a little, I have to accept that- just as I accept any symptoms as par for the course. Symptoms as simple as an uneasy breath are there to show me that my body is uneasy, I have to take note and answer without question. To question takes too long and too much anxiety. I am recovering, I am finding a different way of being and I have to accept how long it takes; no matter how long it takes.

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)

My Day Continued

5pm woke five minutes ago from a dozy, sleepy afternoon, drifting in and out of unconsciousness with The Chamber Of Secrets continuing beside me, keeping me sane.
8.30pm woke at 8pm after more drifting in and out of The Chamber Of Secrets. At 5.30pm I began feeling very strange, mixture of dizziness-without the vertigo, nausea and foggy head syndrome(yes, I just made that one up!) still not feeling great, so sitting in bed, continuing to listen to Stephen Fry and obviously typing! I try not to sleep after 6pm unless something is desperately wrong as I will usually wake by 10pm and then loose my sleep routine for the night. So bed it was and shall be for this evening. Unlike usual I am not watching TV while sitting/lying here or trying to do any reading or knitting.
Next Day
So had a good night's sleep, only punctuated by one of my hot water bottles bursting at about 9.30pm. I was saturated, as was the main sheet and mattress cover. Action stations worked quite well and the bed was half-changed, as was I, within about 10 minutes. I then quickly went online and ordered three new ones from Amazon. They are particularly budget friendly! at this time of year and we always need a stash of spare ones for incidents such as these. (failed last night!)
It is interesting to document a day such as this. In the week of an ME patient, even one who is recovering, there are days of calmness and days of confusion. Yesterday was unusual in that I slept in the evening, but not unheard of. I usually have an afternoon sleep 4-5 days a week, of an hour or up to three hours. Otherwise have an inactive resting morning or afternoon; I'm lucky in that sometimes I can choose if a friend or appointment requires the day to be flipped.
Asking why days like yesterday happen is usually not a good idea. Analysing and questioning such things can be overly exhausting. Maybe I ate something that didn't agree, maybe I slept in an odd position in the afternoon, maybe a yoga pose was too much, maybe I lifted something at the weekend that is just starting to show itself as an unwise move. It could even be something completely beyond my control- likely candidate hay fever, as my eyes are sensitive and my sinuses have been aching too- washing my hair might help and changing the bed clothes again. I am unlikely to know. If I keep listening to my body and follow my best options as well as learning a little bit every week if it feels right, then I will be doing my best. "do your best, leave the rest!"

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...

Yoga Marathon

I mentioned that it was my intention on Friday morning to attempt a yoga mini-retreat. Yes I intended and I succeeded.
Don't get me wrong. I am not talking about 3 hours of American-style aerobic non-stop yoga, without pause for breath and sweat dripping off me in bucket-loads. This was calm, focused, easy, beginners yoga, with poses and counter-poses, meditations and breathing exercises. As I wrote to my husband in an email at lunchtime Friday; "Completed a three hour yoga marathon! Without one breathless, ouch or creaking moment!"
What really helped me in this was something I learned during the week from a study I was reading, by Dr Nancy Klimas. Dr Klimas runs an ME/CFS treatment clinic in Miami and has completed a lot of research on the subject, at the University of Miami. Her studies have found that the crucial thing about doing activity, and doing too much activity in ME patients is the way that the breathing and heartbeat are working together. As soon as aerobic activity becomes anaerobic activity (which can be in as few as 2-3 minutes) the cells in an ME patient need to search for more energy and start using reserves which simply aren't there. Only by limiting aerobic activity, to that short amount of time and interspersing it with equal amounts of time spent resting, can the cells regenerate energy, without seeing the desperate daily or hourly crashes and exhaustion. Until I see a vast improvement in my energy levels, which will suggest I can last longer in aerobic activity before moving into anaerobic activity, will I let myself get breathless without checking in and slowing down or resting.
This is probably the main reason that so many patients have recovered from ME by practising Yoga and slowly increasing their stability. If you can breathe you can practise Yoga. On a bad day, I know I can lie in bed and practise breathing and also meditate.(that sounds daft-I do know how to breathe!) On better days I can hold poses and stretch my limbs out to encourage flexibility and slowly iron out all those creaks and aching joints that still haunt me. I enjoyed Friday's mini-retreat and until I can make it to a regular class with a hands on instructor to guide me through some of the more complicated poses, I intend to continue as I am with my new accessible technology-wise classes and a friendly Yoga website to answer any questions should I have them.

I have been using these two wonderful websites, with YouTube and iTunes podcast links, and both have answered any questions whenever I have asked
Yogaempowered (link)
And Namaste Yoga (link)

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!

When Will I Be Walking Again?

A friend asked me this question recently and I was kind of flummoxed as I don't see it as a priority. The one thing that might push that part of my recovery is that it is my husband who pushes the wheelchair when we go shopping, or even for a short 'walk'(!). I would like to stop using the wheelchair and have more control when I leave the house, but as I say it is not a priority.
I am using my legs around the house, but if I use a pedometer to count my steps during the day, I am still only doing 800-1400 over 24 hours. This needs to increase and I need to lengthen my standing times between rests, before I can walk for anything more than a couple of minutes outside.
My physical energy is used in so many ways. If I was to still ask someone else to continue the cooking, someone to carry me into the garden if I wanted to sit in the shade on a sunny day, maybe also fetch and carry items around the house at my beck and call, then I might be walking 500 yards every day. I use energy in so many ways; when eating, getting dressed, making scrambled egg or a frozen, pre-chopped vegetable based curry! Also when filling my day with time passing activities; knitting, playing patience, doing jigsaws, reading, writing. The one thing I must mention is that energy is needed in this time to heal the body too. De-conditioned muscle needs time and energy to heal, more than a daily night's sleep will give.
Also my legs need practice walking. I am stretching my hamstrings in yoga, in putting a couple of plates in the dishwasher. My hip joints stiffen at the slightest weight bearing and more than a couple of minutes standing still. My yoga exercises are important, by sitting cross-legged, bearing my own body weight and stretching the spine.
Moving around the house will increase as the days, weeks and months go by. When this is nearer normal, or acceptable levels I will start to move about outside. I have had too many experiences over the years of walking around outside only to come home and collapse in an exhausted heap. During these times I have relied so much on others for day-to-day living needs. I am searching for a life where I can function inside and out of the house. Showing others that I can use my legs is not a priority; my priority is feeding myself, washing myself, dressing myself, enjoying hobbies and daily life. Once I have achieved that, I will encourage the outside world to enter into my life again and I will start to explore the one hobby I do still crave; going for quiet, peaceful, adventure-filled walks. (Oxymoron intended!)

Monthly Achievements

So I have been jogging along, sitting on my wave of gentle ups and downs, good days, not so good days. Times of improvement, times of wishing something would happen. Along this wave I am seeing myself achieving little things. Things which appear trivial but are actually major leaps. Here is a list of what I am doing now, which I would not have attempted just two months ago:
Filling up a kettle and walking with it from the sink to the power point.
Making Muffins!
Tidying away bits and pieces without becoming breathless.
Get dressed standing up. (That is amazing- I used to sit on the bed and ask my husband to bring my clothes to me and he would actually put my shoes on for me)
Knitting for 45 minutes occasionally, without aching or feeling breathless.
Walking from our front door to the car, confidently and with purpose.
Sitting at the kitchen table, typing (yes, I started doing that this week!)
On the subject of sitting at a table, I can actually sit without a support for my head for a couple of hours some days.
I picked up a watering can, 5 litres of water, without thinking twice, and watered a pot plant.
Eating a meal with a knife and fork, somedays I regress to finger food, but I am progressing past that toddler stage more and more often, again without thinking.
Standing poses in my yoga. This is a great achievement and gives me hope that I will be doing more walking soon.
I am actually sitting sometimes thinking 'what shall I do now?'. because of this I wrote out a list of activities for myself to use in these situations. Sitting without an activity usually gives me the same old 'phew' response, but actually thinking 'I want to do something' is great.
I can fill up the washing machine- I did it yesterday and did a celebration dance with my husband. He thought I was totally mad, but it was amazing- especially as I had also just removed the duvet cover and sheet from the bed. (so what that I needed a sleep afterwards!!)

Little things are happening; glimpses are appearing. I mustn't reach too far and forget my long-term goal. If I am cautious and take a couple more months to reach my recovery I will not complain. As ever I am smiling all over my face!

Yoga

Yoga has been a very important part of my recovery. For the last 5 months I have been practising Yoga consistently. I thought it was beyond me, firstly because I can't and never have been able to do head stands, and secondly because I knew I could never get to a class or last the full hour most of these classes offer.
Yoga was mentioned in a few recovery stories I read six months ago and that made me sure that it had to be part of my life. I found a few nearby teachers and asked if they would come to me for weekly, short, lessons. One agreed and it worked. The first lesson was exhausting; we did about 20 minutes of sitting, kneeling and lying poses and finished in the lying relaxation pose. I was in tears before we finished as it was so overwhelming and shattering. I'm not sure I would have continued if I hadn't given her enough money for two weeks, so was committed to the next lesson. By needing a three day long recovery from just twenty minutes I was limited to practising twice a week, once with the teacher. I began to research the poses we had been doing, mostly online. A couple of magazines helped with that too and also told me that I wasn't just a beginner, I was and unfit, un-supple, almost totally incapable beginner! So I continued like this for about 5 weeks, 15 minute sessions once or twice a week with dramatic exhaustion but a much better understanding of the focus and discipline that yoga required. To entrench that discipline I changed my plan. One book I read about a recovered ME patient had described a very simple yoga structure. 5 minutes daily with a slow build up as the months went by. This was my new plan. Every morning I entered the day with yoga. To begin with I was following my breath and moving my neck, getting on all fours and stretching my spine, then lying on my back, twisting my legs back and forth, before lying in the relaxation 'corpse' pose for 5 minutes. So each morning pretty much 5 minutes of poses followed by 5 minutes of relaxation was all I could manage, but it was bearable and didn't have such dramatic consequences. As the weeks went by I increased the time to 6, 7 and then 9 minutes. Then 12 minutes and now I do about 15-20 minutes depending on how I feel and some days I just do the original 5 minute routine, or just stretch my neck.
The amazing thing is that this life-style has reached into my day. I think about my breath as I am sitting here typing, I bend over to the fridge and feel my lower back gently elongating as my exhale matches my movement. When I began yoga in January I knew I wasn't going to do it half-heartedly and although I was kind of disappointed at how inflexible I was, I am pleased I have done the right thing; stuck with it and found something to increase my activity levels at my pace and as I choose.
A quick note should be added- I completed my first standing poses last week -forward bend and warrior. When attempted before they have given me a lot of hip and lower back pain-not to mention dizziness! I've done it now and will continue to practise them. I know they will help with my determination to regularly walk again outside. One step at a time!

Amazing Results

Everyday brings an OMG moment. That is one wonderful thing about recovering from any illness. Going downhill is full of "oh, no, I can't believe I can't..." but recovery brings smiles to the face and an amazing achievement at least once every day.
My achievement today was doing a yoga standing pose -the warrior- without almost falling over, or regretting it later. Yesterday I opened a new bottle of water, without help from a rubber bottle opener or a stronger male hand!
Last week I walked from the car to a coffee shop. On a Sunday, late in the afternoon, so no people traffic or vehicle traffic, it was also flat ground and the weather was clement. I did it and had no desperate results. That is all that is needed every day to help me smile and remember a good thing. I can focus on that when I need inspiration. I also try to remember to write them down. I made a fish pie a couple of weeks ago. Using all the tools I mentioned in Finding Food, I did it by myself in the middle of the week (my husband just made the mashed potato before he went to work). So many menus can be created in stages and discovering that I can be the creator is very definitely amazing.
I remember from a few weeks ago, when the sun was warming up the garden, I sat on the gravel and picked up all the bits that had been dug up from our bark area, by the blackbirds. Why do I remember it? Because it was an achievement. To sit uncomfortably, in gravel and sort out pieces of gravel and bark for 10 minutes was an achievement. Gardening is one of my loves, it has been for many years and to see a glimpse of what will be in my future is inspiring and encouraging. By remembering this kind of glimpse I am giving myself encouragement every day and becoming my own life coach. Before I used to see what I couldn't do, or just beat myself up when I'd tried and yet again overdone it and there are days like these still, when my symptoms become overwhelming. Every ME patient is the same. With so many symptoms, confusion, pain and exhaustion, battling from all sides, it is difficult to see anything else. Frustration and acceptance become the two options. Frustration can be combatted by understanding the illness. Acceptance comes when the stability is found, glimpses are seen, belief in recovery is suggested and when symptoms start to lessen. From there recovery is possible.