DO YOU KNOW ANYONE WHO HAS RECOVERED FROM FIBRO/CFS/ME? AM DESPERATE

[WishToBeWell]

Long term MNr but nc. Even here I act as if I am 'well' iykwim as it feels like last place left for me to do that, andI know sometimes I help people which then helps me as makes me feel less uselesss. I am exhausted 24/7 but exhausted doesnt even begin to explain it. Is bone dead. From wakeing I wake up am in intense deep pain in bones joints muscles, just everywhere.

Has got way worse recent weeks without me noticing deteriration IYKWIM and only realised how bad yesterday when hungry but could not move to make food. I didn't even thought it could get no worse

I cant even wash my own hair or prepare food. In a very rational way, if I didn't have DC who I know it would crucify, I would exercise right to self-determination as truly this is is a living hell but that is not and never will be an option for me given would desstroy them and deep down I do sorta hope it will all just go and be better. But alternative of being like this forever just terrifies me as it is no life. Even nice things aren't nice given the amount of effort they take and the pain involved. I mask everything as best can but is very obvious to those who see me that am ill anyway since hardly move and that too eats me up with guilt, that DC see me so weak and useless. DC1 when hugging me gently pointed out I need a shower. I could have broken down on the spot.

No, do not have support, no, GP just uselss, yes, had every test under sun for things like thyroid adrenal but all 'normal' so now have diagnoses been dreading of Fibromyalgia and Chronic Fatigue. Yes have partner but don't live together and he is currently away having addiction treatment anyway (was ill before we met so not his issues have made me ill iykwim).

Do you know anyone who has ever recovered from these as I am desperate looking for help and hope but can't see any. Only thing have read success stories of is Mickel therapy but also see lots of people saying its a scam.

Any advice or storie of recovery would help me more than you could know . Thank you for reading

Hi I'm new to this thread and discussions on ME/fibromyalgia. I have both. I am a bit confused about LP.
Congrats Wish. I hope you continue to feel well.
My understanding from where people who say the LP works is that the reason we suffers get ill and stay ill is because: Everyone on the planet gets ill. Most of us recover. If an illness comes and there is an emotional blockage, this blockage prevents our body from repairing itself and us getting well. Remove the emotional blockage and this allows our body to heal itself. LP is designed to help us to feel happy and positive. In order for it continue to work, we must continue to feel happy. The body and mind are inextricably linked and it's about getting rid of emotional baggage.
As far as I'm concerned this could potentially be a piece of the puzzle but not all of it. I haven't tried it btw. I have however had numerous therapies. Not seen dr my hill or meuschel. I've seen dr Kenyon. I'm on cannibidiol with him. Pure synthesised oil. Very very expensive. My body likes it though but he isn't guaranteeing a cure and unfortunately I'm one of the minority for whom, initially all the pain went and now some of its back. 2k for a 3 month supply....
I also see dr Fi Dann. She's not a medical dr, she's a toxicologist. She produces and sells specialised detox remedies. She uses muscle testing (kinesiology) and has put me on supplements, which vary. I know my own body so well now. I have to use high quality vitamins from online shops such as and Nutri, epigenetics as I cannot process a lot of the stuff from boots etc. 5htp, NAC and d Ribose are fine apparently but not a lot of the vitamins particularly b vits.
I crashed around four years ago although I had symptoms for many years before, which I ignored.
Tried amyltripline for pain. Was too ill stopped after 3 days. The combination of Lyrica and duloxetine sent me over the edge and was the beginning of a very ill period. I stopped both. Withdrawal from Lyrica was horrendous and lasted months. I took seroxat for a while to help me get through the emotional times when I couldn't look after my DD - she's very active and was 3 at the time. She ended up in nursery 3 days a week. My friend looked after us another 1.5 days and I struggled one morning a week. Dh was there at the weekend.
I'm so much better. I've read all cfs people have PoTS. I've learnt all cfs/fibro people have a low grade infection, which cannot be cured by antibiotics.
I take a combi of pills vit d3, 5htp (great for melatonin and sleep as I get tired and wired), NAC, b12, b vits as required, was on p5p (b6) for a while. Ive had others, take I've ribose on and off, lots of Nutri concoctions when needed - Nutri Adrenal (and adrenal extra), Nutri Thyroid, Sos Advance remedy....
The better I feel, the better I eat. A Paleo/caveman diet is best for me. Gluten free Lots of good fats and nuts. Our bodies need lots and lots of salt. Salt all food liberally. I drink "sole" everyday with my breakfast. Google it to see the online recipe. I've taken a step back at the moment and am back on Coke (Coke and salt solution are a great electrolyte). When I get a bit better again I will stop with the Coke and go back on d ribose and trace minerals with sole as my electrolyte drinks.
One thing I couldn't see mentioned in these posts was SIBO small intestinal bacterial overgrowth or gut dysbiosis. Anyone who is struggling to assimilate b12 has it. And this causes biofilm in our gut. I take diatomaceous earth first thing in the morning and wait for half an hour to eat. Apple cider vinegar (acv) great for this too.
I've spent maybe 30k on treatments and supplements. Have body work twice a week.
I used to have chronic sinusitis, get regular colds, night sweats, hardly be able to stand up. I take bicarbonate of soda to kill colds, that with acv, d3 (Immiflex). in factI take Immiflex and d3.

My DD had a dance show last weekend I was feeling awful by the end. It was 12 hours sat and sun full on and I could stand (just) the next day. I'm still recovering but considering I used to take 3 weeks to recover just from visiting relations that's pretty good going.
I know all about hair washing and spoons. It's been so awful. I've forgotten months of my life because of illness, inability to move and brain fog. Putting DD to bed used to consist of me crawling up the stairs and dh doing all the rest. Now I have a life but it's still very limited.

I usually stay away from ME/CFS threads and LP threads as it always becomes a need to prove LP and the dismissal of people that have recovered from treatment from it.

However I dont want any negative posts to derail WishtobeWell and having had LP feel it may help if I give my experience.

My background was originally in science so to me anything remotely "Woo" goes against the grain. But being a mum with young children and completely bed ridden from ME/CFS I had to do something to get better

I had ME/CFS in the traditional way I had whooping cough and even when the whooping cough eventually went away I was left with what was first diagnosed as post viral fatigue but later to ME/CFS. I got worse and worse until I was fully bedridden on a feeding tube as I did not have the energry to chew or swallow my food. I gave a year to the "traditional medics" who could offer me nothing except anitdepresents (interestingly as my Dr handed me the prescription he said we do not know why these work for ME and pain but they seem to!).

We had all the tests we could done privately and by the NHS but got the diagnosis of ME/CFS from three specialist Drs.

Then I had to work out a plan to get better. I was too weak to google phone etc so my DH spent hours sourcing treatments etc. He reluctantly told me about LP as he was running out of ideas from all of his research.

The first day of LP I lay on the floor with sun glasses on (as the light was too bright) and ear plugs in as I was so sensitive to the noise.

Over the three days I was able to sit for the whole course and go for a gentle walk in the afternoon. I slept well and it was refreshing. It gave me back my life. I was not instantly better at all but I knew I had the tools to enable me to get better. It took hard work and commitment but each week I got stronger and stronger. Having been off work for 18 months I was back at work and back to being a functioning Mum again.

I am not anything to do with LP so excuse my poor explanation. Generally the body tries to heal itself as we know. LP puts the body in a position to allow this to be fully effective. LP recognises that physical symptoms are out of our control but we can change the way our body reacts to situations.

A good example of this is if we see something shocking our heart rate will increase and adrenaline will be produced - our body is reacting physical to a situation. The same the other way round listening to calming music will lower your heart beat and maybe even your blood pressure so again your body is reacting to a situation.

In LP we are taught to retrain our body to react to trigger situations and these may be different in different people. Like many people I would have crashing fatigue if I did anything , this even included sitting up in bed. Using LP I was able to change my physical response to this situation. It did feel when I had ME that my body used to crash into situations really quickly and I just learn to change this response.

The way that LP works means that if you do doubt LP then you will be affecting the physical response in your body. So if you are trying to get some energy but are constantly thinking this will never work, this is rubbish and quakery then you are not giving your physical body a chance. That sounds rubbish but I hope you get what I mean. LP is NOT positive thinking at all it is using your whole body to change a physical response.

I can hear a load of you dismissing this and saying there is no evidence, etc etc but to me not being rude I don't care I got my life back - my life is fantastic I rarely think about ME but 10 years on am truely grateful for the simple things in life and how ME enables me to do them.

Just to state again that this may not be a totally accurate explanation I did my LP over 10 years ago and have nothing to do with LP so it may have adapted over time but the above is how it worked for me.

I wish you all well and hope all ME/CFS suffers find what works for them - it a horrific illness and noone should have to suffer it.

duh simple things in life and how ME enables me to do them. LP enables me to do them.

Me enabled me to do nothing

I think you've explained it well. I don't know the LP but I can certainly tell that I have a totally physical and unconscious response to some plans or situations and CBT for instance has enabled me to start figuring out what might be under my control to challenge. This doesn't mean it is all in my mind. I think of it as more that my sympathetic and parasympathetic nervous systems are out of whack and realigning them can only help.

Having said that, LP is not for me. But aspects of psychological treatment have helped me.

cheerfulmary - so if I tried LP with any doubt I would not be able to make it work for me? You can't just give it a try and see if anything happens?

I have no words right now other than to say I am free

Well GOOD MORNING campers So day 3 was yesterday - and the whole thing has been and remains just fucking mindblowing to me

Before I write anything else, I want to thank you again (you all know who you are), but those here from the beginning and who rocked up to offer hope in whatever form, from CFSKate reading between the lines and asking anyone who was suicidal to please, please just wait a couple of years until phase 3 of a drug treatment was complete, through to Pausing and others just willing me on, through to Rainybows and HappyHello whom I will forever be indebted to

I also want to write that, compared to where I was just a week ago, I feel fucking FANTASTIC [gratitude emocion] - the sun is shining and I will be going for a walk later with my my darling youngest who arrived home from boarding school last night

Yes, you read that right - I will be going for a walk later in this beautiful Spring sunshine PRECISELY the kind of thing I was mourning, the simple things that muggles take for granted, a short stroll in the sunshine with their kid/s but to me something that has been out of reach for years now

I did see the posts above last night but was so engaged in other things that I barely had time to do the v. brief - emocion summation! - 'where I am' post above. I have to say, I can now UTTERLY see why the fabulous What gently suggested that I did not return to the thread once doing/done LP but I'm fucked if I'm being pushed off my own thread by some Johnny Come Latelys and their own issues and their - frankly, really frickin dubious looking reasons - sudden motives in being here now

Am gobsmacked by some of those posts TBH and not sure right now if I should invest spoons in directly replying to them as:

A) This thread was NEVER about LP; I'd never even heard of LP until after I posted of my miserable existence and just pleading for even a shred of fucking HOPE - which Thank the fucking Lord I was lucky enough to get c/o ALL the posts that talked of recovery, irrespective of what source that recovery had been achieved by/from; and

B) I'm not here to explain - and very DEF not here for others to demand I personally explain/justify/defend - LP. That said, CheerfulMary and a pp have probably done a better job of that that I could right now anyway.

The sole reason/s I AM still here are:

i: for my own selfish reasons, I want to have this thread and to be able to look back at it right now (in faint wonderment right now if truth be told!) and as stuff rolls forward.;

ii: for folks like Hey & Pausing who overtly asked me to update, for CFSKate & others who have been her since the beginning and who are ill themselves yet have just so bloody beautifully willed me on as well as asked me to update; and also now a 3rd reason - one I did not even dare to DREAM of when I wrote OP - which is if by writing of my own progress on this thread helps just one person in the way that HappyHello & Rainybow helped me find that route TO HOPE then I need to post if only for that

All of that said though, there are a cpl quick specific ones tho I will briefly address as kinda feel I have no choice to - which is bang out of order IMO, but I'm not going to let folks who have no clue of my reality (past or present) and who have suddenly just rocked up to the thread but are firmly conspicuous by their absence in the support phase of it, seemingly appearing now just to, I dunno, poke sticks at me? Project their shit?

Whatever, I'll address these 2 then that will be that as I have better things to do with my new-found spoons and better things to write (& to more genuine posters, those who have been here when I couldn't see how much longer I could survive like that and whose motives for being here are not remotely dubious).

Miffle I would genuinely like to understand how such a severe physical transformation can happen. To me, it wouldn't be enough to say "it doesn't matter, at least it's happened"

Have no issue with your first sentence, but with your second, did you mean to be so rude?

In the nicest possible way (& I think Cheerful wrote something similar in her post vis - after v kindly taking the time to explain her understanding of 'how' it works - wrote that if folks still had issues with it, then she didn't care, she had her life back ) who the fuck are you to demand of me what would and wouldn't be 'enough' for you???!! Seriously? With the greatest of respect, maybe this isn't where you need to be, as this is not and was never a thread about X treatment and then my personally being somehow accountable for your understanding of that.

Suggest you go back to the OP to see what this thread is about and where it started and why I wrote my OP (cripplingly ill and DESP looking for a way out that didn't involve suicide FFS), and then get that all that has followed is simply the path I choose to take up after others had posted of their realities and their recoveries; it's of my reality and I'm sharing it here both for me and for others who have been in similar boat asking same question and been here since the beginning.

If you or anyone else doesn't get that basic tenant then that's really not my problem, but that doesn't give you the right to EVER dare to question the depth of how fucking PHYSICALLY ill I was - truly, my piss is seriously boiled at the notion of anyone telling me that if I'm in a better place now, then I 'wasn't ill in the first place'

====================================================================================

BIG FAT LINE

Right, and breathe Wish

To the rest of you lovely lot, I'll get back to the basics of updating about me and stuff that has happened.

So, at the end of day 2/Weds, I went forth and shopped then was so beside myself that had been OUT that posting here was the first thing I did - after that, I ate my first full dinner in years, gluten free spaghetti carbonara and New York cheesecake I had both an appetite, and no nausea in the way, and I was properly hungry. I don't want to fall into hyperbole but it's pretty hard NOT to given so extreme a shift is that (& ON TOP OFF by then 2 full days out plus hitting shopping mall plus all of the travel involved in that lot

I then fell into bed as was super tired (unsurprisingly enough, given body has barely moved for previous XY period) but I set alarms for early yesterday morning as I wanted to have a BATH before I left.... This is me who has loathed the state of myself but been unable to shift that in any way; who since last November have kept clean solely by using hospital bedbath wipes to at least manage a a basic level of hygiene but that was my aim and post day 2 of course - and reinforced by the incredible success of being out and shopping - I dared to believe I could.

Miraculously, my alarms woke me (previously I have simply slept and slept through maybe 20-30 3 minute apart alarms on my phone, but somehow yesterday I was awake by the second one. This was at 8am - 8am FFS! - and by 9.30 I had had that bath. And I can't put into words how incredible that felt

Not only did I have a bath, but I also managed to whip razor out to use for the first times in months (literally, months) - I shaved my legs forestry commission jobbie! and armpits they were c.1970 in Germany or Holland! both of which pretty physically demanding, yet I did it

More still, on day one I had gone in my onsie as anything that pressed into waist was just too painful and uncomfortable; on day 2 I went in my pyjamas loungewear and uggs; and yesterday I WORE ACTUAL CLOTHES!!!!!! Leggings and a t-shirt and a fluffy cardigan to be precise and AFTER ALL OF THAT was ready to be picked up at 09.50 for the one hour drive there for day.3. It was AMAZING to see the shifts in some members of the group, ALL of them had done 'something' the night before (ie their equiv of my foray into shopping centre) that they would not previous have been able to ranging from 11 year old (youngest in our group) going to Brighton to walk to the end of the pier through to one woman - who I'd put on a par with my OP in terms of starting point (of the 6 of us, there was a wide range of duration of illness and depth of illness but with the clear common thread of ALL being profoundly PHYSICALLY unwell) - going to the pub with her husband for the first time since before she became ill

I have no words to describe either my joy yesterday in sharing with the group what I had done the night before, nor hearing of these other people's adventures back into the big wide world - it was incredibly moving

Yesterday went by in a bit of a flash, but a flash that has ended up with my having a weekend planned to seaside town where DC1 lives in c.3 weeks (I know!!! I have to keep pinching myself!) and just a profound - and by then very firmly evidence based - knowledge that I was in a wholly different place on Thursday to that which I had remained in until Monday. Much like CheerfulMary wrote above, I am not one of those people who can suddenly today do cartwheels, and my recovery will - again like her - be one that builds upon itself. But where I AM is already beyond my wildest dreams and I am beyond thankful (understatement of the century) that - in SUCH fucking desperation - I wrote that OP screaming for help.

I can't quite believe OP was only 2 weeks ago today. It has felt like months, but the hideous reality of housebound ill has always (for me anyway) meant that every day felt like a year, so that period post OP but pre LP really did feel so very much longer in time.

I do need to go but there is just SO much more I want to share for the genuine and original posters on thread. I'll likely come back later this evening and report back on if did go out to walk (as if do, that will be first stroll out from home in over 2 years; in recent times I have not even been able to go to the local shops - maybe 150 metres each way? - to the point where my meds were all delivered even though my pharmacy is in that same parade of shops - I just couldn't do it (though god knows I had tried and tried until hit the point where it was simply impossible).

The other thing I do have to mention before I go are other people's observations of me (& those I can actually SEE with my own eyes). The group members and the 3 observers (relees of very sick people who needed someone with them the whole time) ALL commented on how well I was looking vs. the first day they'd met me when I staggered in in my onsie, collapsing on soft reclining chair. Spoke of my skin colour having changed (it has!), through to how much clearer thinking and thus clearer and more succinct my voice and speech was, through to physically how very differently my body was moving.

NB: DC3 who arrived home last night was faintly gobsmacked by changes in me and it was a joy to see his face realising that we are now on a different path. I've asked him - and he has agreed - to at some point today please write down his thoughts and observations and to mail that to me. I did that both for my own record (see all above vis importance of thread to me in all this and in checking my own progess), but also with people like Hey & CSFKate in mind, as clearly he is separate to me and at 14, I'm guessing no twats will suddenly sidle up to thread and suggest he is some LP 'advertising' imposter (can't tell you how much that post riled me until I refused to give it no more headroom - cannot get over the outrageousness of suggestion I am 'advertising' nor the UTTER ignorance of this being a one person very very personal thread from someone desperately and very very physically unwell, and their own personal journey from those pits of hell and moving into the light. [Yes, I promise I will after this waste not even a tea spoon on them, but felt had no choice but to address them here]

This is by FAR the longest post I've ever written yet my wrists are not screaming at me in pain, and my fingers are pain free and supple as they sweep across the keyboard. Whilst I do know how and why this has happened, that doesn't in any way make it less miraculous and I do have to keep double checking that I'm actually awake and that this is real

Massive hugs and peace to you all this beautiful - and aptly named - Good Friday

Wish

Aware very long post but tried very very hard to break it up into smaller chunks, as well as formatting, as am ACUTELY aware of my own previous limitations in reading/comprehending stuff

Here - these. I had a BATH yesterday, but these were what I have been dependent upon for what feels like a lifetime.

Anyone who rocks up and wants to 'correct' me about having been very very seriously ill, please gaze at these or a while and imagine this being your reality. More to the point, were I not seriously ill, d'you honestly think these are what my hospital and then GP provided?

Well, to be honest, you have been so breathtakingly aggressive and rude, I'm reluctant to engage with you any more but I wanted to say that you seem to have misunderstood my post. My "to me" comment was (as I explained) from the perspective of someone seriously ill - seeing your transformation due to the LP and asking you if you could explain your transformation. I don't, or can't, buy or try anything these days without researching it properly and "we can't explain how it works but it works" just wouldn't be enough for me to take a chance. This is really all I was trying to say and I'm sorry you took it the wrong way.

I think a lot of people, not just me, are actually asking you if you could genuinely explain, as someone who has been through it, how this amazingly swift and huge recovery was actually achieved and querying what actually took place for this to be achieved.

But as you say, you aren't obliged and don't want to explain anything anyway so you carry on with your "it's so wonderful, I'm cured, the rest of Johnny come latelys who have just seen this thread and are wanting some hope and asking me questions can fuck off" attitude.

I'm genuinely glad that whatever it was worked for you and I hope your recovery continues as I wouldn't wish illness on anyone. I shall hide the thread now though as I don't particularly want to receive another tidal wave of abuse, and your later posts have been, frankly, so bizarre, I would take any further comments or explanations you did deign to make with a very large pinch of salt.

.

If I misunderstood your post then my apologies Miffle - it just felt that suddenly there was this barrage of folks - none of whom had been on here previously - suddenly rocking up to decry me and (way way worse) suggest I was never ill and it did read in a very 'demanding' way and to a specific criteria... and of someone who only finished the course YESTERDAY!

If you too are ill and someone tells you that you are not, that it's 'all in your head' then I suspect you too would likely to be angry at that.

Again though, my apologies if I misunderstood you but what was also going on was an immense amount of [anger] at at a PP who essentially accused me of being a liar; asserting I cannot ever have been ill; calling me a troll; and then even more outrageously, saying this 'smacked of advertising'. Apologies if any of that inadvertently came in your direction, but maybe folks should think a bit before they hit their keys. I am a human being with a real life that has been utterly shit, and now I have some - already evidence based - hope, and no I won't and can't sit here with a keyboard warrior blithely accusing me of lying or that very worst of things, 'telling' me, I can't have been ill

And I do ABSOLUTELY want to be of service to others just as PPs were to me, if I could gift anyone genuinely ill anything then it would be that gift of hope given how utterly desolate that landscape is. But what I'm not prepared to do is suddenly have a load of people who really weren't here throughout this suddenly rock up and - instead of being pleased for me and maybe hopeful for themselves - instead give me a bit of a kicking &/or expect me to overnight have become the expert on LP.

I'm not budging from my commitment to post what my reality is (for the reasons outlined above)& I would never not want to help anyone else nut neither I nor my recovery will be a punch bag for other people's doubts or issues. Two weeks ago today I had never even heard of LP and I only finished 3 day course yesterday. My primary objective is optimising it and moving on bit by incremental bit, it has to be and I'm sure - if you know the depths of hell I was in when I wrote OP - you'd not only understand that but be cheering from the rooftops for me; not (uber aggressively demanding, which is how it felt) telling me what would or would not be 'enough' for you' but again, if I misunderstood then I apologise.

I'm not sure how or why you find my posts 'bizarre' but if you do, then I guess you can either not read them or keep the fact that - to you - they are 'bizarre' to yourself as they are in no way 'bizarre' to me, and all this thread has ever been is one desperate woman screaming out and then getting advice and acting on it, and then reporting back, so I guess you can hide it if you find what I write 'bizarre'..

TBH, when I read those posts, the one thing that kept going over in my head was that MN classic of 'fuck me, did you mean to be so rude - that versus the utter happiness I had as I returned to the thread to update as promised just pole-axed me (& is of course, I now get, why What told me to NOT return to thread post LP)

I hope you have an enjoyable Easter weekend and apols again if you personally were misunderstood &/or were swept up in the very natural response to that one incredibly outrageous post (which has been reported)

So sorry to see you upset at the way this thread has turned.

Genuinely pleased that you have found a way through the illness

Your posting style is overly aggressive OP. There is not need for all the capitals and bold stuff. Also considering that the people on this thread have ME, I cannot even try to follow and read most of your posts, they are simply far too long. I too am finding your behaviour a bit bizarre. If people don't 100% agree with you and back you then you turn completely. Not on. We are all ill here. Think about that with your personal attacks. Which I have reported btw.

I have had a luxurious couple of hours, including doing a bit more training which has been really useful Have a (large) Tesco order arriving shortly which previously had me is total tizz as very hard to manage, but I don't feel any of of that impending sense of fear or dread at the physical machinations involved in that.

For those interested in what posters and have done before me and what I am doing now - one thing of note is that I cocked up on NOT doing that (pretty short) first thing this morning. Had I done so, I would not have been knocked sideways in the way I was but would have approached it very differently - lesson for self vis tomorrow's homework

Aspie My posting style is just what it is - we each have our own. Vis whether it's not suited to your being able to follow it, I can't change what does or does not work for you, but there is a specific ME/CFS support thread which is I suspect what you are looking for and this isn't it.

And I am not 'turning completely' on anyone who 'doesn't agree with me' (not even sure what that means TBH, as how and when I am improving vs. I was are matters of fact, not opine/s) but yes I will (or I would have more to the point, as from now on I simply won't engage with anyone who posts such bile) pull up anybody who has the blindness and the audacity to tell me that if I can recover in any way, then I cannot have been ill at all in the first place when it has been my (bastarding) reality for the past XY years. Genuinely, what's the difference between those posters and the people that we collectively loathe who for years have told me/us that the illness suffered from is not real, is not physically disabling, but is all in our heads ???

And thank you if you've reported anything on the thread, as the swifter MNHQ's attention is drawn to it then the swifter the truly vile post on it will be deleted; so thank you for that.

I hope you find recovery and peace through whatever route works for you

For those interested in what posters and have done before me

=

For those interested in what posters have done before me

#doh

Well op you tried it and it worked for you. I hope it has long lasting effects and that you can get your life back on track. Like i said before hope is truly the thing that keeps me going for me the LP would be no good but i will not knock it if it has worked for you.
For others out there the Rpyal United hosp in Bath have a 3 week intensive residential course which you can go on provided your PCT will pay for it. It used to be the hosp for rehumatic diseses and still is. Good luck op and if you dip at anypoint come back and we will help you through it

Bless you Pancake and that's a really useful piece of info vis the 3 weeks residential hospital - great resource for you to have posted

I have today prepped (MASSIVE prep as million cloves stuffed into cuts made into the leg of lamb - see pic for proof of MY handiwork!!! - then each manoeuvred in so wholly under skin, rubbed with handmade olive oil and rosemary marinade, seasoned etc etc) and delivered on an entire Easter Sunday lunch ALL BY MYSELF [joy]

AND much manhandling and carrying and removing from oven to baste etc all superheavy as well as prepping carrots, fine beans, Yorkshire puds (yes, I know!), gravy (M&S cheat grabbed on my first ever shopping trip on Weds!)

I cannot tell you delighted my boys are, as well as being just really shocked at the change Yesterday morning, I woke up at 9ish, some 4-5 hours earlier than I used to, and instinctively just stripped my - superking so HUGE - bed/duvet cover etc and just toddled downstairs *carrying this huge bundle then bent over to load machine etc... all before I had even had a coffee

Am also tho being very kind to myself and resting when tired - this body has barely moved for 2 years so I'm really feeling the impact of that via lactic acid and tightness etc, but it seems to be easing.

I am overjoyed and this Easter is the most special one ever

I hope you are all having the most peaceful, joyous, and pain-free as possible Easter Wish

It is super sad that some pp's are PM'ing me instead of posting

It's not that I remotely mind the PMs and am really happy to help where can and to answer them; but it's the reason why they are PM'ing - they don't want to risk being laid into or told that, if they're considering the LP, then they 'can't be ill in the first place' - that's not only sad, but is incredibly damning of the more extreme posts (thankfully the singular worst one now deleted by MNHQ); it's really not on when folks reach a point that they don't feel safe to post on an MN thread IMHO

Main reason I'm here (v swiftly here as in the middle of something - bloody delightful and whole new sensation to BE 'in the middle of anything' vs. previously!) but I wanted to quickly post what my 14 & 20 year old DS's have written. One arrived home the evening of the course after my not seeing him for 2 weeks, and the other from Uni and hadn't seen him for 8 weeks. WHOLLY independently of each other, both of them commented first about my colour, then at various moments each of them pointed out other things of progress I then asked them if they could each please write down their obs in one collective place and please mail to me, both so that I had those to read and reflect on, but also so that I could share whatever they - independently - wrote with you guys so you could 'see' any changes observed externally, as opposed to my simply self-reporting. So...

20 yr old DS: Hey, so here's the stuff I've noticed that's changed about you. It's pretty easy for me to spot because I've been away for a chunk of time, and you're noticeably different in a lot of ways.

First you're simply a different colour. You looked normal before because I was used to it but I expect if we put a photo of you as you are today (even having just woken up from a migraine onset) next to one of you three months ago, you'd look positively gray in the older picture.

You move with much more agility and with much less caution - you're not hurt by every movement and you don't seem to expect to be either any more. You even walk faster - I think I've seen you run to the door a couple of times.

You don't struggle with each and every meal any more, even after cooking it yourself for hours at a time (e.g. the delicious Easter roast we had yesterday). You've gone as far as spontaneously accepting food.

You're capable of concentrating while other people are in the room, or even playing music or cooking. You hold conversations better and you're speaking much more concisely without losing any informational content (which is great for me!)

You just seem happy, which is awesome. I haven't seen you so consistently smiley in ages. I'd guess from a combination of the hope you can now justifiably have, and from the lessening of your overall suffering (which seems to be continuing by the day).

That's everything that occurs to me right now but I'll keep pointing stuff out as it appears.

14 yr old DS: Your colour looks a lot better and now your skin is more soft pink like normal. You have much better looking eyes, you used to have quite noticeable dark purple bags whereas now I can't see any at all.

You seem a lot more perky, you used to look like you couldn't run ten metres but now you're jumping and jogging around the place.

___

How fucking unbelievably fantastic is that lot? And it's REAL and even 'just' now (all is steadily improving by the day, even with me ensuring I rest when I feel I'm tired etc) it's beyond my wildest dreams when I wrote that OP just 17 days ago

Will post again in a couple of days and I hope all can feel ok in coming back to the thread and not just lurking - and I hope you have all had the best Easter possible; for me & my family, this Easter has been truly spectacular as we have been able to HAVE an Easter together

Whilst nowhere near 100% yet, I am so removed from where I was and in so many different ways (capacity, easing of brain fog, easing of pain, return of concentration, ability to eat FFS!) I feel honestly blessed, and please know I haven't forgotten a single one of you (& that will answer some more PMs when can!)

independently of each other and of me, so both objective and separate to each other is what that should say...

What's the residential in Bath?

G1raffe, this pages gives some more explanation regarding the residentials. Its with the Royal United Hospitals trust in Bath. You can stay in nearby flats so the family can come too!
www.rnhrd.nhs.uk/page/78

How was your weekend, Wish?

Well, it's 3 weeks today since I finished the LP and - whilst I have NO clue if anyone is still checking back here - I wanted to update esp as thread will remain here and may be of use to others.

The first thing to say is that I would no yet consider myself 100% recovered but all is heading in the right direction towards that. LP is, at it's heart, a training programme designed to work with - and re-shift - the neural pathways in the brain using the brain's own neuroplasticity (I'm pretty sure everyone knows of neuroplasticity but if not, Ruby Wax has a great vid on YouTube after she studied Neurophysiology at Oxford where she references it in the context of both helping shift depression and vis staving off depression) and it is very much something you need to put the legwork in for and train at day after day. It's not remotely as simple as just attending for 3 days and then as if by magic you are suddenly 100% transformed (although having said that, there are unquestionably some pretty hefty changes throughout the 3 days - witness my joyous shopping trip on day 2!)

Where I am now is I would say 60/70% better than was when wrote the OP (something I've just read back and is beyond heartbreaking) and it's getting better week by week, and 'just' that 60/70% is - frankly - amazing. The best examples I can give you in terms of shift are that, on a day to day level, I CAN now take care of my youngest child who previously had to board - I can wake up at 6.15am to wake him up and I can nightly cook us both meals. Again, 'just' that is miraculous compared to pit of desperation I was in.

In terms of bigger things, things that were simply unthinkable previously, last Saturday night I was able to get a train into town to take DS3 into the West End where we watched a comedy play and then walked for over 2 miles around Soho hunting for Honest Burger (the one that does gluten free burgers and buns!) Pre-LP I could not walk to my local parade of shops (c.250 metres) so to be able to stride through London on a busy Saturday night was simply mind-blowing and life-affirming beyond measure. My legs KILLED c/o lactic acid the next day - which they would given was by a mile (a couple of miles!!!;) the single furthest I had walked in over 4 years - but I didn't have a massive slump or crash that I very certainly would have done previously.

As per the way DS's described me a week or so after attending (further upthread), I remain much clearer head with I'd say 80% of brain fog lifted and getting better week on week; I can cope with other people being around me; I can multi-task again (IE maintain a phone call whilst unloading dishwasher, whereas previously I coudn't even UNLOAD the bloody dishwasher, let alone do it at the same time as concentrating on something else.

I cannot express my gratitude enough for the 2 posters who first wrote of LP and what it had done for them (ESP. since now realise they were to a degree putting their own heads above parapet given how much some people seem to loathe LP).

And as one of those 2 wrote to me, I in turn can't advise if it is or isn't something you should do given it is a lot of money (mine was £650, plus £300 in 3 days of taxis as at that point I couldn't even drive - something I can now do again btw ) but what I would say is that I would do it again in a heartbeat and for me, it really has been beyond transformative

The only last thing I (pretty sadly tbh) need to say is, regardless of your own views on LP, please don't 'tell' me that I wasn't ill; that I wasn't bed and housebound; that I wasn't so sick that I needed to put my son into boarding school as I couldn't take care of him - as I very much was all of those things and had been for many many horrific years.

I wish everyone on here all the very best, Wish

PS Am going to change my user name now - for obvious and VERY happy reasons! - but I will still be on here if anyone wants to PM me

That is brilliant - I'm really pleased for you.

Had been hoping you would update! So delighted for you.

I've been having a great result with a few weeks of weekly Vit B12 injections. Cautiously optimistic.