Unreal

I heard someone say this word the other day. Some of you will know exactly where I am coming from when I say I have so much familiarity with 'unrealness'
For years I had bouts of being unreal. It might last for hours, days at a time. Sometimes weeks of unrealness would encompass my whole being.
The lightheadedness, dizzy spells, lack of focus in the eyes and weird feelings in my mouth. Like the saliva had taken on a new form of being; disappeared and comeback from an alien's mouth. The unreal feeling is something that a lot of ME patients will connect with. It is a state of not knowing where to turn, who to ask questions of or whether or not, if the mouth is opened, the words will actually move through the nervous system from the head to the mouth. For me, when it went this far I was in a scary place.
I did too much last week. talking to too many people, or attempting too many exciting things in my life, too much of things one after the other. Twice I sat in bed with the TV on and DVD player ready to play a familiar film- Sleepless In Seattle- to give me a focus, a centre, a place of comfort. I know the words off by heart. I can find an easy road back to speaking and understanding language and laughter just by hearing the same words whenever I am in this state. Unreal-ness has come to me over the years and I have used different films to find the focus- When Harry Met Sally was one of the first, also Steel Magnolias, Pride and Prejudice with Jennifer Ehle. I even used to watch the snooker and cricket for hours at a time. Really starting to understand the game more than ever, to find a focus and a way back to cognitive awareness.
So I need to continue at my pace, realise how much little things can influence my day to day existence. It isn't just a case of 'over-doing it' it is realising how many little things too close together can make such a big difference. Every little thing has different consequences- I can do daily beginner yoga classes in my living room, alone, quiet; but I can not do large amounts of socialising, visual stimulation, noise and emotion. As ever it is not pushing too far, too fast. Having patience and taking one step, or even half a step, at a time. Assessing each day as it comes and not being afraid to say "no".

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 Simplest Things...

...Can lead to a few bad days. Or as I prefer to call them hibernation, or not-so-good days.
Hibernation can come about for just a few hours, a couple of days or a few weeks or months. It can be a result of many things. Firstly by overdoing it. Overdoing it, I have mentioned before. It can be seen as a failure, a desire for more when more is just not possible. By fulfilling that desire, hibernation is the result. It can be agreeing to lunch with a friend when you know that bed should really be a more sensible option for the rest of the day, or not cancelling an arrangement because it has been a guiding light for weeks in advance. Sometimes it is actually worth fulfilling that desire or arrangement and as an ME patient that is the personal decision that has to be made. It can bring happy memories- glimpses- for weeks to come, or it can bring about guilt, shame, disappointment and regret. It is learning to accept the result which can shorten the required rest time. This type of hibernation can also be brought about by impulsiveness. I can be impulsive. I expect many people can be. To please a friend or make life easier for myself I will choose impulsiveness over sensibility. It works most times; other times I have to pick myself up, dust myself down (hibernate for a short while!) and start all over again!
Another simple thing can be an unexpected burden. Cognitive activity should not be underestimated in this illness. An unforeseen financial or family situation can use up a lot of energy and bring about hibernation. The main reason for this is the increased insomnia that is brought about (for many sufferers insomnia is a daily symptom). We all have nights when tossing and turning is brought on by thoughts and burdens. For an ME patient this coming on top of non-restorative daytime rest just creates further symptoms such as headaches, migraines, increased pain elsewhere in the body and cognitive confusion beyond belief.
One more simple thing to mention is infections and viruses. The immune system is working overtime in an ME sufferer so an infection of the slightest degree will be fought as soon as looked at and all the energy the body has will go towards this fight. In some cases it is in dysfunction to the other extreme so that colds and flus bring on worse regular symptoms- runny nose, temperature, coughs and indigestion. In both extremes another hibernation is induced. This is unpredictable, totally devastating and most definitely a reason for longer-term hibernation.
We have to accept these interruptions in our road to recovery and even in our darkest stability months and years. The simplest things can lengthen our illness, but they are very difficult to avoid.

Beginning Recovery

Making a start towards recovery is difficult. As I said before, deciding to sit on the bottom rung of the ladder, or even the floor and waiting for recovery to find you is possibly the best way to do it. I had to cut off a lot of ties, emailing and FaceBook became my social life. Knowing what is going on around you is very helpful and doesn't make you feel so cut off from the world. Deciding to not "Over do it" is also the first rung of the ladder. To find this place you have to learn to say "no"! and find quiet things to do when you can say "yes". My quiet "yes" time is having a friend over for a cup of tea for an hour or so. My husband also takes me out at the weekend to sit in a coffee shop for an afternoon. Six months ago he would leave me there and go and do some shopping. Now I am able to join him in the wheelchair and make some of the decisions. Soon I will be walking around some of the shops. It is all about taking small steps.
When I was spending a lot of time in bed, taking a step back meant removing cognitive pressure rather than physical pressure. Last year we cleared out the bedroom. I chose some patterned boxes and filled them with the items from the surfaces; DVDs, make-up, hand-held mirrors, necklaces, scarves- just little things that I used occasionally but, by my being in the bedroom more, were becoming clutter. By reducing the eye candy, I had a calmer viewpoint; less to distract my mind. I also decided carefully on things to put by my bed. Firstly to just ease the need to call for help so often I now have a bottle of water and a small glass there constantly so I can refill when I need to, rather than waiting for assistance. I have always had a box of tissues there, a pack of patience cards, hand cream, throat pastilles, a few books to flick through and the phone and my handbag are usually there too. One other thing that I started using last year is packets of wet tissues. For a while I was asking for a flannel or piece of damp kitchen towel, just to wipe my face or hands after eating. This can now be sorted without the hassle and on days when I am finding everything difficult I use them instead of washing in the bathroom. A lot of these things are no longer necessary every day for me, but a welcoming bedroom is still something that says to me "don't be ashamed if you need to come and have a quiet rest for a while, give yourself a break"