A mum’s message to the person who recommended the Lightning Process…
Thank you, thank you, thank you for recommending Kathy and the Lightning Process – M is now possibly 100% better!!!!!
Words cannot begin to say how we all feel, we have just finished day 3 of the training and are naturally having to adjust to the enormity of what’s just happened.
She’s been ill for over 3 years, with all the usual multiple horrendous headaches, brain fog, muscle aches, slurred words, slow brain processing, sensitivity to light, noise, taste, touch, heat etc. massive pain every time she eats, incontinence, fainting and body (especially hand) tremors. She has been completely out of education for the past couple of months and only left with trying to stay awake by fiddling with string and bluetak as even trying to draw/paint her eyes would not focus and she had hand tremors.
That’s the bad bit!!!
We all listened to the Lightning Process audio (step 1) recordings and (as M was too ill to do her usual yoga and painting that were previously her ‘go-to’s as things she could do without much Post Exertional Malaise) she listened daily for a week to the last audio recording (on boosting her immune system) as it didn’t cause any flare up and was beneficially relaxing and positive too.
Then Kathy came this Tuesday, Wednesday and today.
Day 1: After about an hour in the training I thought M would need to stop and M asked how much more time was left as she was getting worried. Kathy said we could stop but also gave us a choice of doing one more section so we carried on (and then forgot to stop – therefore already M had changed things as she was not feeling bad!)
By the end of the first day, I believe she had ‘switched’ (just as quickly as when she switched overnight 3+ years ago). She was able to read and write day 1’s questionnaire, stay up at least 3 hours later than normal, eat out of pain, and steer her headaches away (we both forgot her midday dose of pizotifen headache medicine). We went for a walk in the hideous heat (further than she had managed since before Xmas), played a 1 hour board game, then watched an hour of TV, showered and went to bed – every single activity a massive step far outside any of our comfort zones!!!!!!
Day 2: M woke up with no PEM!!!!!!!! She felt tired but a different ‘normal’ tired (our house was uncomfortably warm in the heat).
An hour or so into the training, M felt one of her many headaches coming on – she did the LP and Kathy carried on with the training. Later she had hand tremors and the same things happened. By the end of the day, we knew massive changes had happened so we decided to set crazy goals for the evening (we wanted to test everything assuming she’d crash etc. and that Kathy would be there in the morning to pick her up).
M’s biggest fear was brain fog in thinking, concentrating and writing an essay so she did that activity first. 40 minutes later (as that was the time we set – around 5 or 6 times more than she had been able to manage this year), M said how easy it was, how her thoughts and sentences just flowed and how wonderful it was. Her writing was back up to speed and sophistication (by approx 100+ times!).
We then took her to a lido (outdoor swimming pool) to cool off and go swimming (again years since she has been able to swim). It was full of happy, but loud squealing, children etc. but M was fine (we stayed in for about 20 minutes).
Next test… we then took her out to a restaurant – M usually gets overwhelming sensory overload and anxiety, and the whole experience is far too long to be away from the house. The wait for food would cause her pain so she would have to leave it and need to drink a prescription food supplement milkshake when back at home and have a chance to recover a little. However, M was absolutely fine, devoured her food and chatted. By the end of Day 2, M had bright, wet, alive eyes and good skin colour in her cheeks – amazing!
We then went home and played a card game. All activities in the last two days were more than she could have accomplished and spread out over the past 3 months!!!!!
Day 3: For the first time in 3+ years, M woke up naturally (i.e. we didn’t wake her nor any alarms, although she did have only half of the blackout blinds closed). When she came downstairs, we knew she was better and I cried, knowing subconsciously she was able to do that.
Tonight (day 3), M went shopping with my husband (N) – they both desperately needed clothes (M has grown in the last 3 years and N just hasn’t had a chance to go shopping for essentials) and now they’ve just done a cycle ride!!!!
Tomorrow is the last day of term and she hasn’t been in for months. Earlier this week I booked her a taxi to take her to college just for the lunch hour so she could see her friends. Today, her key worker and I changed it so that she goes in 2 hours earlier to ‘browse’ the library and get 10+ books that she’s so hungry to read and enjoy – she wants research and critical thinking books (whatever they are) and the librarian is all set to help her find everything she’d like. Happy, happy, happy days!!!!!
Kathy was absolutely fantastic and we had fun discussions (I was in on all of it too and I found it immensely helpful, primarily for M but generally as a lifelong skill for both of us).
M’s wheelchair came out of the car and I will soon be throwing out loads of single-portion, frozen, homemade, low-fibre and FODMAP-friendly meals, god knows how much medication and food supplements and cancelling her carer that I had only just this week managed to set up. Also notifying PIP, blue badge etc. but not quite yet – we’re only day 3. We are planning many, many things she’s been dying to do as well as tackling head-on all things she was worried about (reading, thinking, writing, physical exercise, going into crowded and noisy places, having a lot less sleep, lowering her medical doses etc.).
We saw a neurologist for the first time last week who, like all other medical areas such as gastroenterology, dieticians, urology, abnormal bloods, and rheumatology etc. have confirmed that there is nothing physically wrong (except bloods) reinforcing to us all that everything is being caused by her brain and body ‘doing ME’. We knew the Lightning Process was really her best hope and greatest chance to recover from this ghastly debilitating life-stopping illness AND knew that she was now really ready for it.
I’m sure that M may fall over, forget to practice it and miss some PIT signs, she will need reminding of things along the way (maybe as early as next week, or in 10 years, and she may forget to really practise it regularly) but we all know now that it really, really works and it has been M’s and our lifesaver – no exaggeration there and I’m sure you know that too.
For now, N and I need to remind ourselves that these incredible changes are real and to kick ourselves whenever we are about to try to protect her by suggesting limiting activities (fearing a crash if she overdoes it). It’s such an adjustment to all our lives and will need getting used to and nurturing.
Thank you for helping us help M and all fingers and toes crossed for us to continue to quickly find wonderful lives again 🤗