The Lightning Process

I've been meaning to write for a while about how I got better from ME/CFS. Those of you who have met me face to face will know that I had several really bad years with CFS; I was mostly housebound and completely unable to work. Any time I did something really tiring, like meeting friends in London, I'd pay for it with days or weeks of pain and exhaustion.

Weekly Vitamin B12 injections helped by relieving the brain fog. I also did daily meditation, as recommended by the NHS, and paced myself. I did try to gradually increase the amount I was doing but without any noticeable progress. So I resigned myself to feeling like an eighty-year old woman although I was in my mid-fifties, and to a life where the internet was my main contact with the outside world. I had my lovely family around me and I told myself that I was happy.

Then a friend sent me a press cutting about the Lightning Process and I was desperate enough to try it.

The first day of the three-day course, I set off fearfully. I had a half hour's drive to get there, which was more than I was sure I could manage. All the way there I was turning over in my mind how I'd get back. Would I be able to drive? Would I need a taxi? Or maybe find somewhere to stay near the training venue?

That afternoon after four hours or so of training, I drove back home happily. I drove to a local wool shop to get wool. I cooked dinner. I drove my son and daughter-in-law to Slimming World and back. The change was amazing.

At first I kept very quiet about it. The Lightning Process sometimes has a bad press because of people apparently making extreme claims about it and I didn't think anyone would take me seriously until I'd been better for a while. And to be honest it felt like early days and I wasn't sure how I was going to be next month or next year.

Five months after the course, I was looking for work and found a part-time job at an after-school club. I was nervous about taking it; would my energy hold up? Well, it did and I felt happier than I had in a long while. No more state benefits for me I was getting paid, and getting paid to do a job I loved.

In April it will be two years since I did the Lightning Process. I'm working, I'm cycling, I'm learning Spanish and I'm happy. At the moment I'm trying to get fit enough to go on a skiing holiday.

I think we can call that a success.

Oops!

picture by ictioscopio

Some of you know that I have CFS and have done for a few years now. I've not found much that helps: meditation and pacing plus "nutritional support" stopped the downward slide, but what helped most was vitamin B12 injections. They were recommended by an NHS consultant and given to me by my GP.

Today I received a letter telling me that my B12 injections would stop forthwith, and my son and his wife have five more weeks then theirs will stop. Apparently, using B12 for CFS is against the NICE guidelines and my GP surgery won't do it. Nothing to do with budget cuts, obviously.

I've been feeling better these last few weeks since I did the Lightning Process and was wondering about reducing the injections then tailing them off but I can't believe that stopping them this suddenly is anything but countertherapeutic. I worry for my son, who is very poorly indeed with CFS and is mostly housebound. Oh dear.

So, now I'm off to find out who can help: PALS, an ombudsman, CAB, the prime minister. Or maybe I can go private. I really didn't need this.

In other news

Here is one I made earlier

I've had some sort of a bug, which on top of the CFS mostly had me stuck on the sofa for a week feeling too knackered to post. I dug out an old granny blanket (afghan) that I'd abandoned years ago and added a few rows and looked online for some wool (yarn). Then I found Ravelry. There should be trumpet sounds here but you'll have to imagine them.

Ravelry is a site for people who love knitting, or crochet, or both and I've found a whole host of fellow crocheters as well as learning more about how to crochet than I have in the past thirty odd years.

What's odd to me is how I seem to end up in the more marginalised section of whatever I love. Crochet is looked down on by a lot of knitters, who are in the majority. And in the same way, I've always loved reading but my favourite genre sci fi is even now often regarded as inferior and many people only seem to relate it to films. It was worse in the 60s: a girl reading sci fi! You could see by the covers the books were meant for men!

I've no idea when this is from

Being a woman, and older, and into computer games isn't entirely mainstream either. I don't do any of these things because I like to be in a minority; they just come naturally!

Are there any things that you do that put you outside the mainstream?

My work in progress

don't worry be happy

Photo by Sarah G
Creative Commons
some rights reserved

After halving the frequency of my vitamin B12 injections to "see how I go" the CFS clinic has now agreed that I can go back to having them weekly. So I should start feeling human again very soon! Yay!

I got the email from a nurse at the CFS clinic yesterday letting me know so I rang my doctor's surgery immediately to tell them, and a kind nurse checked with one of the doctors and managed to fit me in for an injection straight away. I took a copy of the email down to the surgery for their files.

Later when my GP arrived at the surgery I got an annoyed phone call from her saying that I shouldn't have been given the injection based on an email. The clinic should have faxed the letter to her and she is going to tell them so. I have a nasty feeling that two kind nurses are going to be in trouble for helping me out.

I could have done without the stress but at least I got the injection!