Sunday, 21 October 2012
I've been doing quite well, trying to spend less time in front of the iPad. (hence the fewer posts!) I've started moving my social life slightly away from the online network and am seeing a few friends from Church once a week. Knitting club is becoming easier to manage too. Once a month we meet up and I have managed three out of the last four months. Considering I did one in the previous twelve months, that's pretty good going. A friend is also coming round with her son once a week after school, which is a great way to start seeing people regularly again and keep in touch with those who really matter. It is amazing, and for some people totally incomprehensible that sitting with people, even really close friends, and chatting, even listening to others' noise can be quite exhausting. You'll probably remember the sensation from when you have a headache or the flu coming on, but this can be constant and needs understanding from others, or complete avoidance!
With the colder weather I am indoors more, can't really sit in the garden when it's pouring with rain or blowing a gale! But it is really cosy in our sitting room with the multi-fuel burner roaring away. We have also achieved our promise of buying a new sofa and chairs at the end of this summer. So I can actually sit in front of the fire in comfort. A couple of times every week I am managing a short walk too. Which I am really enjoying. There is a river in our town and I am five minutes from a bench in a very quiet location where I can sit and watch the river wildlife enjoying its day too.
After my seizure a couple of weeks ago I have had a metaphorical slap in the face. Before then, for about 15 years, my seizures were all during the night, or at least when I was asleep in bed (with the ME that was sometimes a daytime option!) So I have got out my silver talisman bracelet, which contains my medication information, next of kin, phone numbers, home address, all written on a slip of paper and folded into it. Paramedics and first aiders are trained to look for it. I have attached it to my keys as I know I won't leave the house without them and am unlikely to wear my talisman bracelet every day around the house (it is rather heavy and uncomfortable)
So as mentioned in the previous post I have reached the 6 month date since starting The Gupta Programme. This is quite a milestone for me as I realise how far I still have to go, but looking back I also realise how much I have recovered since starting. The other tools which are still helping me are reassuring. And I know I have private coaches to guide me if I find any times particularly difficult. These last couple of weeks have been difficult, but I'm managing on my own. I'm staving off a cold and doing very little physically. Knowing that I have to give my body time to fight this virus helps me get through. Pushing through it is likely to push me backwards, as I have mentioned before in my blog, I have to sit down on the rung of the ladder and look at the view for a while, so I don't start falling off it again.
Friday, 19 October 2012
I have been reading a blog by another ME patient (vivaciadreamsofnome) and have written this post in response to her starting the Gupta Programme, just like I did over six months ago. It is a difficult thing to take on a recovery programme of any kind. It takes faith and putting your full trust in someone who you've never met, who you have had to pay and who you have promised to devote your life to for the next six months is quite a scary thing.
Having gone through the turmoil of trying to work out why I got sick and whether these new treatments think I made myself get sick, I want to reassure you with how I worked it out.
Most of us with ME went through some kind of trauma before the illness took hold. Usually it is a physical stress that causes the illness to take hold. In some cases it is three or four emotional stresses coming very close together without nearby support to keep you going. The physical body cant cope. Our doctors batter the body with antibiotics, tests, scans, drips, goodness knows what. It was what the doctors had been taught to do and how they had previously helped people recover. The bodies natural defences start working, just as they have over many generations, throughout history. But we keep trying. Most people can get over meningitis, mumps, a couple of blood infections or glandular fever, but some people can't. Centuries ago that would have been accepted, we would have been "the ill one" in the family, but now we have to keep fighting, we are encouraged to do so from all sides, to keep up with society and the body keeps fighting back.
Because of this our physiology changes and unconsciously learns that even doctors are a threat, antibiotics and the tiniest cold or soar throat can have us in bed for weeks, so fight, flight or freeze, the natural defences are the new learned response to absolutely anything.
Getting too cold when out for a short walk might give me excessive shivers, but then my body would react excessively on top of that, I would be in bed for weeks and have a fever and migraines. That simple example shows that nothing could be done to change the body's new over-reactive defences.
That is what the new understanding of ME has proven. To find recovery these unconscious patterns of physical behaviour are challenged and slowly and surely the patterns change. It is amazing but quite simple too. There are a lot of physiological problems still with the body, toxins have built up with the lack of movement, energy channels are blocked (proven by scans of the neck to cause brain fog) and it takes time, depending on how long you have been ill and depending on how severe the illness has become, to recover to full health. This is where 'pacing' is still important.
Imagine changing the fact that you put on your socks before your shoes and you started wearing you socks over your shoes. It would take a few weeks, possibly months to change the automatic response when you were getting dressed, you would have to consciously decide and sometimes reverse what had automatically happened to make yourself do it. But before long it would be a natural response, quite uncomfortable non-the-less, but you wouldn't have to think twice about it. The same thing is asked with the Gupta Programme, (and many other recovery programmes out there) that we retrain our brains to respond differently to the stimuli that make our bodies react in a way that makes us ill. Depending on how long the illness has been in control and how severe the symptoms have become, it will take different amounts of time and more or less perseverance to find better health. But it is a possibility, recovery is out there to be found.
Be assured you didn't make yourself ill in the first place, you didn't consciously encourage your body to continue being ill and if anything it was the body's natural defences that encouraged the illness to continue. Patients with ME are some of the most determined patients doctors ever come across- who wants to lie in bed without being able to read a book, watch TV or listen to the radio, not be able to enjoy a nice meal or slice of birthday cake? ME patients can stand very little stimulation and are constantly asked to bear some of the most uncomfortable symptoms. And those who seek help and want a way out are the bravest. It takes courage to believe in yourself and take on such a challenge as the Gupta Programme. If you have done this I commend you.
Friday, 12 October 2012
Yes the days have been uneventful,with little progress or back stepping. So I am happy. Tired and happy. I've not managed much activity, a little bit more socially, which is a great boost to the spirits. I had a seizure last week, probably because of a cold, but who ever knows with such confusions? Since then my body has been telling me to take it easy physically. I've managed a few quiet yoga sessions and to cook a little bit in the kitchen, but very little else. I've spread myself thin on-line(as you might have gathered!) and allowed myself to experiment with visiting some friends, making sure there are limits with how far I go and how long I stay. My confidence in my own spirit seems stronger. I'm sure that my believing recovery is a possibility and knowing I will get there has helped that. I just have to live with whatever bumps on the road happen before I reach that horizon. I'm in a bit of a valley in some areas at the moment, but am right on the top of a hill in others!
Thursday, 4 October 2012
Monday, 1 October 2012
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.