“The Universe is always changing. Everything can change in a moment. You never know what will happen in the future. Never stop fighting. I’m fighting with you. If you feel like giving up, give it to me. I will carry it for you.” Whitney Dafoe
This is the 7th Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance – a day which marks the birthday of Sophia Mirza. Sophia Mirza’s death from ME in 2013 at the age of 32 in the U.K. brought widespread attention to the plight of the severely ill for the first time.
As often occurs with the severely ill, Sophia’s severe debility and extreme sensitization to many kinds of stimuli made her life a living hell, and as so often occurs, the medical system’s response only made things worse. Considered an “attention-seeker” with an enabling family, she was sent to a psychiatric facility where her health declined rapidly. Sophia’s death was not in vain: the coroner’s autopsy report, which found massive spinal cord inflammation and damage to her dorsal root ganglion, received widespread publicity.
While little has changed for most of the severely ill, their plight is much better known now as the result of Sophia Mirza’s, Whitney Dafoe’s and others’ stories. For the first time, the severely ill are being included in research studies. The Open Medicine Foundation, under Ron Davis’s direction, has devoted approximately two million dollars to the Severe ME/CFS Big Data study, and the CDC included the severely ill in the second iteration of its Multisite ME/CFS experts study.
While recovery is obviously very rare, some people with very severe illnesses, such as Mike Dessin and Kyle McNease, returned to normal functioning. McNease writes in an upcoming blog:
None of it has been easy. None of it has been traditional. …My one piece of advice for anyone who might read anything I’ve written is don’t give up. If you’re suffering from this horrible disease, the good news is that there is so much more that can be done for this patient group…and treatments will come. Let’s try to live long enough to see them come to fruition.
Given the right treatment, Whitney could clearly join Mike and Kyle. Whitney Dafoe is about as sick as you can get. Unable to talk, drink or eat he’s been fed by feeding tubes for years and yet….remarkably enough, the old Whitney – the old thoughtful, sensitive, and yes, the hopeful Whitney – he’s still there!
Ron Davis and Janet Dafoe, his parents, have found that Ativan is able to rouse Whitney for short periods, and during these periods, as ravaged as his body and nervous system are by this disease, Whitney has been able to provide remarkably thoughtful communications which indicate that, given the opportunity, their thoughtful, sensitive son should be able to return.
On Severe ME Day, check out an inspiring and bracing communication of hope from the OMF, Whitney’s mother, Janet Dafoe, and Whitney himself. For me, it’s a reminder to never surrender, as appealing as it may be, to resignation, despair or anger; to never stop believing in the possibilities that are present. The universe, as Whitney noted, can shift in an instant. Never give up!
In recognition of #SevereMEDay, we would like to share this touching message of hope from Whitney (Ron Davis and Janet Dafoe’s son), which he conveyed to his mother with great effort. Whitney offers a reminder to each member of the patient community that they are not alone in this fight:“Last night, when Whitney was on Ativan, I told him that August 8th is Severe ME Day and asked if he would like to send a message out to the patients around the world. He wanted to know if it would go out to patients all over the world and how it would be sent. I told him that OMF would send it out and that lots of people would retweet it and repost it and that his message would go really far.What happened next was amazing. He closed his eyes and thought about it for a long time. Then he took an hour using Whitney Sign Language to dictate it to me. Word by word. If you look at the words you will be able to imagine how hard it was and how long it took. In between sentences he closed his eyes and after long pauses he’d start on the next sentence. He was crashing when he finished. He really is dedicated to helping patients! Here is his message:“The Universe is always changing. Everything can change in a moment. You never know what will happen in the future. Never stop fighting. I’m fighting with you. If you feel like giving up, give it to me. I will carry it for you.”With love and hope,Janet”
This is not the first time Whitney has inspired others. Martha has a familiar story – she’s had to fight our health care system every step of the way; she’s lost many of her friends and important relationships; her career plans are shattered; her ability to do so many things gone…She felt herself sliding into doubt and despair and then thought of Whitney struggling simply to survive, and declared that was over.
Martha, you are not allowed to doubt the reality of your condition… If you allow the doubt that has been cast upon you to turn into and onto yourself, then you are also doubting the very reality of Whitney’s condition…as well as all of the “Whitneys” of this hidden world of illness who will never be featured…and never be seen.
So, on Severe ME.Day, here’s to fighting the despair, hopelessness, resignation and bitterness that are so easy to succumb to – and to keeping up the good fight – the fight for a healthy future for all of us and those that come after us.
“The Universe is always changing. Everything can change in a moment. You never know what will happen in the future. Never stop fighting. I’m fighting with you. If you feel like giving up, give it to me. I will carry it for you.” Whitney Dafoe
We both cried as I read this to my daughter because the thought of giving up comes to her on bad overwhelming days. We both needed a little cry today. Thank you.
It’s so easy to give into despair but for me it helps to think that none of us are really alone! There are so many of us out there fighting and we are doing this for ourselves and each other. Each time we surmount despair some brightness appears that wasn’t there before – and something on the planet moves. I don’t know what but it makes a difference. I really do believe that.
You are such a bright light in my life, Cort, as is Whitney. I’ve suffered with MECFS for 20 yrs in Dec. we are never alone.
Beautifully said, Cort. Thank you.
Soooooo Beautiful! The struggle is real and we all feel its effects. But it’s good to remember, there may be others whose fight is harder than ours and we just need to make it one more minute, one more day and then one more week. Who knows where or who may give us that encouragement to keep on surviving. Science is advancing, knowledge is getting greater and puzzle pieces are coming together. There is HOPE! I hope we can find a “purple bandaid” to soothe us over until there is a time when we no longer need one.
Well, I am quite amazed at reading Whitney’s story of his severe M.E. that he has been unable to talk, drink or eat. For years, I have had loss of voice, and was told by a specialist that my muscles were just too weak to operate my vocal chords. I do get short period of some sound, but it is very weak and I soon lose any ability to continue a conversation. I have also always had very weak throat muscles, so that chewing is almost impossible, and I can easily choke when trying to drink. I have been disabled with severe M.E. since about 1986, after being confined to bed much like the flu for 3 years between 1986-1989. I am elderly now and suffering too from fibromyalgia with severe burning and muscle/nerve pain for many years, with added IBS and stomach issues.
It might just be worth checking with your doctors whether you have a potassium deficiency, which can be a cause of muscle weakness, and possibly a contributor to the semi-paralysis/immobility often experienced in ME/CFS. (I only just learnt about this one, from the 25% Severe ME FB Group, so I thought I’d pass it on.)
Home remedies include consuming more fruit and veg and legumes like bananas, avocadoes, white beans, spinach and tomato juice – if that’s at all possible for you. Also potatoes with their skins on are good.
Wishing you all the best, Elizabeth
Dear Elizabeth, Thank you for kindly responding. I do have low potassium so try to have bananas every day. Because of my very weak chewing muscles and TMJ as well, I find difficulty in eating most foods, and have to have a lot of soups and very soft foods, or else I can choke. I certainly could not eat potato skins or avocadoes and due to severe IBS as well, the only veggies I can manage are runner beans/peas and carrots, if cooked well and mashed. I also have many allergies so cannot manage much in the way of fruits, but I do have porridge every morning with softened dates, and grapes, and an occasional clementine etc. I have been completely voiceless again now for 2 weeks, and am struggling to eat much at all. But as I am a Christian, I pray in my heart for God’s enabling from day to day. I so appreciate your reply, thank you dear.
What a heroic message to take on the suffering of others and help them to go on fighting. So inspiring! Awesome! Certainly a message of unconditional love and hope. Thank you Whitney! God bless you and all of us! Let us never give up the hope that God’s healing can happen at any time.
Dear Cort, On Severe ME Day, can you please ask Janet Dafoe if she is willing to provide more information on Whitney’s use of Ativan – how much does he take (and for how long does he take it) before he feels its effects. Of course, this is not medical advice, but just to give us an idea of how Ativan has helped him. I would like to know how it improves Whitney’s ability to be transported out of his room to the hospital. Many ME/CFS patients are intolerant to passive movement – that is, other people trying to move them on a stretcher to the doctor or hospital, – it just costs too much energy and can greatly worsen symptoms. Much too little is written about this devastating symptom of ME/CFS, which is experienced by many very severely ill patients. I look forward to your response!
That would be good to know. I will see. I suspect, in fact, I know that Whitney is not the only one helped by this drug. It’s a go-to drug for some I know who when she really needs to get through something she takes it – and it works! Something very interesting is going on here.
This is not medical advice, I’m not a medical professional, and maybe there are some people who shouldn’t use it at all, but since learning that it helps some people, I have been using Ativan/lorazepam periodically. I will post information about how I use it now, but I followed the wise advice of start low & go slow as I am very sensitive to almost all medications- maybe some people shouldn’t use it at all.
So you can gauge, I am severe, but not very severe like Whitney. I am housebound & can take a few steps, so live between bed & recliner. I only leave the house for medical appointments.
I use it in two situations, and it both helps me temporarily do a bit more, and crash less:
1) when I know a situation will exceed my usual energy envelope (doctor appointments, rare visitors)
2) when my “adrenaline” response (heart pounding, shakiness, etc.) won’t go away after a trigger (e.g. stressful news, unexpected loud noise).
This is all I can write today but will post more details tomorrow.
Thanks Birdie, I think this is something we should dig into more deeply. Ativan may be a good “rescue” medication that could be used more than it is.
MEDICAL APPOINTMENTS: This is my protocol for medical appointments. Starting early means things have kicked in for the car ride, then continued small doses so that it lasts through the appointment & getting home again.
All refer to a 0.5mg lorazepam tablet.
1/2 lorazepam = 2 1/2 hours before leave time
Ibuprofen & Food = 1 1/2 hours before leave time
1/4 lorazepam = 1 hour before leave time
1/4 lorazepam = 1/2 hour before leave time
1/4 lorazepam upon arrival at doctors office
VISITOR: I have trouble speaking, not being able to put words together, and sustain speaking. Lorazepam can really help with this. When my out-of-state sister comes for a weekend I take small doses through her whole stay, which allows me more interaction time than I would be able to do otherwise.
1/2 lorazepam = 1 1/2 hours before visitors arrival
1/4 lorazepam = Every 3-4 hours, when I can feel it wearing off
I keep taking 1/4 about 4x day for the couple of days after she leaves, and it really helps buffer the crash I would have had without it.
STOP STRESS RESPONSE: When something triggers an ongoing “adrenaline rush”. If I can’t calm it down it can lead to a crash. I used to try to muscle through these and learned that I do much better if I curtail it with meds. Usually one dose of 1/4 lorazepam does it.
SHORT TERM FUNCTIONING: If there is paperwork or something else I need to get through on a timeline, 1/4 dose can help me get through the concentration/reading/writing.
DOWNSIDES (at least for me)
1. Although I haven’t experienced it, I’m aware that using it too much can result in habituation. I’ve heard Ron Davis state this as a concern.
2. What I have experienced, if I use it too often, is severe chemical depression. A big dark hole opens up and swallows me. Luckily, for me, it subsides and I return to baseline after a few to several days off. For me, this is the main deterrent to using it more often.
3. It dampens awareness of when you’re exceeding your energy envelope & you can really overdo it, leading to a more severe crash. I recently used it to get through a cognitive task. It felt so good to have my brain functioning like the old me, but I wasn’t getting the usual clues about when to stop (I almost felt cognitively well for a little while, sigh…) I really over did it, and had a big crash I’m still trying to crawl out of.
4. It dilutes emotions, both good & bad. I use it to go outside a few times a year, but the pleasure of it is dulled. It’s a trade off.
5. It interferes with memory. In the moment it helps me communicate to the doctor (although I’ve learned to bring a written outline to give to the doctor), but I’m dependent on my caregiver to later recall details of what the doctor said.
I truly hope this might help someone else!! Open to any questions, although I’ll need time to respond.
PS- I think I’m remembering correctly that Whitney gets his lorazepam through IV.
Birdy thank you for sharing this. I know this was a huge effort and I’m grateful to you. Going to talk to Dr about this.
Janet Dafoe told me Whitney takes 2 mgs in his IV. It starts to work within about five minutes and then slowly works. As the minutes tick by he is able to slowly take off his mask and start to look at things. Eventually he’s able to look around and communicate via pantomime. Before he was unable to tolerate the sound of someone’s voice but since December, when he gets his Ativan boost he is able to tolerate Janet’s voice.
Hope is powerful. Hope keeps us going when all else seems lost. Hope is an anchor for the soul.
Hope, particularly when cultivated, is extremely powerful. In the same way that despair, fear and hopelessness are also such powerful emotions that obviously destabilize emotionally and also, I physically.
It is possible cultivate and grow positive emotions like hope – we’re just not used to thinking that way. With everyone but particularly with people with diseases like ME/CFS it has to be created out of nothing! You can’t look to your surroundings or circumstances to find reasons for you – you just have to create it – decide that you are going to be and exist in a state of hope – and then create it again and again and again.
Much better than despair!
I took some Ativan when I was subjected to an extremely stressful training program for a retail job. The impact was immediate: my head cleared, I felt energized – I didn’t feel ill. I quickly realized, though, that due to the drugs short half-life, I felt driven to take another dose. Ativan can be addictive, not habituative. I stopped taking Ativan immediately and switched to Klonopin, a drug with a longer half- life. I don’t feel driven to take it, though realize that I’ve become habituated to it’s use. It would take a lot of time to ween off of it if I wanted to. It’s a helpful drug. The bottom line I guess is ‘whatever keeps your boat afloat ‘. Best wishes to all.
Let us not forget Jennifer Brea who has hopefully returned to normal functioning for good as another example of a severely ill patient who through persistence and perseverance managed to find a root cause of her severe ME/CFS. As well Ana Harris who was diagnosed with Lyme but whose symptom list will be familiar to anyone with ME/CFS has also had an amazing recovery. http://anaharriswrites.com/
While rare there are many stories of people who were severely ill who have been able to find their way back to health or at least find significant gains.
Thanks for mentioning them James – we should make a list! I think I will. I just created one – https://www.healthrising.org/treating-chronic-fatigue-syndrome/severely-ill-chronic-fatigue-syndrome-fibromyalgia-recovery-stories/
I’m sure there are others we can add to the list.
Whitney is a real legend…think of what it means when someone in his condition offers to carry a burden for another. It really bought a tear to my eye because of how courageous and kind it is for him to offer. I thought I wish I could do something to help him and his family, then I realised there is something – donate to the OMF.
I appreciate all your comments. Wow! Thank you Whitney. What an inspiration! My 33 year old son is sick, he has been sick for 12 years. He is not as bad off as some of you describe, but he isn’t able to drive or have a job. It’s hard for me to watch him suffer. It’s also hard for me to see his friends moving on with their lives. Thank you for your messages of hope. God bless you all.
re; care for the seroiuly ill – and their carers
I have cared for a severely affected person on two occasions, on both occasions the person was bed bound and for months unable to speak or swallow or open her eyes or tolerate sound. She could not defecate unaided or sit to urinate and had intense pain and i, as a resut. had intense anxiety. The experience has marked us both as we both react to our fear of relapse differently, but we both now have a life.
The person cared for now makes a living teaching Conscious Dance. She has, since the last relapse, trained as a therapist and dances up to 3 hours a day.
This would not have been possible if both the patient and the carer had not been cared for. You and your carer are a dyad.
I would like to offer 2 things: one a few tips on coping and secondly a description of the care we joint;y received, because good quality care for both is crucial.
There may be an opportunity to avoid tube feeding but still get good nutrition if you use organic baby food jars. easy to store, easy to heat and can be spooned in or made liquid. low cost and no waste, and no preparation. But I found couldn’t eat myself after an hour and a half spooning half a jar, but still better than a tube. When I was just too tired to cook I then made myself and my patient a ‘green juice’ – basic juice cucumber and celery and what ever else is palatable and no trouble. Kept us both alive and healing, however slowly. I used organic boxes delivered weekly and any other delivery I could find. Tip 2. and , i recon this is a must, the doctor insisted that the patient sleep at night and prescribed a medical sleeping pill AND 900mg of the herb Valerian ( it stinks but who cares) plus codeine for pain. It was a potent cocktail and it worked. The doctor said she would stop the codeine easily when she recovered, and she did.
2. secondly Care Needs: the much criticised British National Health Service took absolutely wonderful care of me, and for free. This is what good care looked like.
Every Morning, seven days a week ,rain or shine, a wonderful care worker came through the door for three hours of support. as the patient was too ill and super sensitive to be touched so the lovely helper helped me. I cant tell you how important it was to me for the shining black face coming through my front door; it helped ME and me….she really minded what sort of night we had had and just took care of us both. Aswell as the carer I got personally two full days a week respite care, on condition I didn’t stay home. It saved my life. sometimes i didn’t get further than the ARK bench outside.I also go a carers allowance of about $150 a week and the patient got a sickness benefit of around $400 a week. and pension credits. We owe our lives quite literally to the British tax payer,
We got the standard winter fuel welfare top up, although the appartment was always warm and dry. We were given a reclining wheel cared for when she improved and a hospital bed ( an absolute MUST HAVE and a hoist for toileting.).
I n addition I was taken on a special course for carers of the severely disabled and shown ‘manual handling’ and given assurance that I must always call the ambulance service for hospital transport . The drivers were gentle and so reassuring. We felt quite grand sledding across the floor of a large London hospital in a banana boat.They couldn’t get the boat onto an examination table so the medics had to grovel on the floor to do an examination; good! amd anyway they found the patient in perfect health. Do you think medical school blinds them?
One of my horrors was of getting physically stuck with a patient I couldn’t move and this happened a few times. Never felt more helpless.So they showed me how to move my patient.
I will not bore you with a description of the months we endured without help.THIS CARE IS WHAT WE ALL NEED PLUS COMPASSION.
Years later I stay close to ME organisations because I think we ALL NEED Care to survive this illness and us few who have got better do need to speak up for those who are still struggling.
Love to you all and to our marvellous champions.
Thank you Phyllida. I appreciated your words.
What a great soul; very humbled and grateful to read Whitney’s message.
Whitney is an inspiration to us all. I can’t imagine what it must have done to him to find the energy to send such a wonderful message to everyone. It is hard to believe in a future without M E but if Whitney can do it we can to, bless you Whitney.
Thank you more than I can say, Whitney. Sending so much love, light and blessings to you and to all other people suffering with this horrible disease.
What a heart opener Whitney’s message is. I hope never to whine again, not to lose hope again. I’m going to print this out and tack it to my wall. Thank you, Whitney; thank you, Janet; thank you, Cort.
As a housebound ME person I find that one thing I can do to support others is send an arc of light and love from my heart to their heart. I will be sending to Whitney in my daily meditation. I encourage everyone to experiment with this. It definitely helps me and I think it helps the other person. I find it has to be sent to just one person, not larger groups. Hope is an important medicine for us but love is even more powerful. I struggle with filling my heart with self love but when I do it helps the pain. Ativan is a good med too!
I felt tearful too that Whitney was thinking of everyone else around the world.
I believe isolation is hugely detrimental to anyone’s health but particularly relevant in the case of ME/CFS.
I am not a severely ill person with ME/CFS but I do think I have ME/CFS, even though nobody else does.
I have so many things I’d like to write I feel overwhelmed…
So to start, recently, a few months ago, (I have difficulty in remembering when things happened, so I kind of approximate – what season of the year did it occur? Was it in the last few days, weeks, months or years?) I was going in a downward spiral.
I could only eat unprocessed meat, steamed spinach and kale, poached eggs and Roibos tea without reacting. My stress levels were chronically stratospheric and I probably hadn’t slept ‘well’ for years. Yes, I could sleep for days and nights but that wasn’t restorative sleep, incorporating deep sleep cycles.
My short term memory was non-existent and I could only just about process one set of thought at a time. Zero ability to multitask. I was actually aware that I couldn’t hold information but that didn’t help. My brain just couldn’t do it.
So this is not a good situation for a middle aged, lone parent of a teenage son, to be in. No one believed I was Ill – ‘all in my head’ or somewhere but not real…
I trained as a Counsellor/psychotherapist – which is where it all started – a long story involving massive, totally overwhelming psychological stress – but what the training and subsequent research does give me is a framework to assess myself and the possible effectiveness of different treatments.
So CBT, as in, some notion that ME/CFS is a fabricated illness, attention seeking etc with no physiological basis is total nonsense. In fact I think it’s far, far worse than total nonsense. I strongly believe that influence and support the CBT/GET advocates give, to the uninformed opinion that this illness doesn’t actually exist as a very serious, complicated illness, is actually a component of it’s exacerbation in individuals.
The therapists I would recognise as being positively effective, would be those who really ‘see’ their clients. That would be regarded as a huge part of the therapeutic process. So I don’t know who these people are that are practicing CBT on their clients?
There is a massive amount of division within the therapies. There are psychiatrists, psychologists, counsellors, psychotherapists and there are ‘good’ ones and ‘bad’ ones in each profession. It is easier to spot the difference, when you have a degree in Counselling/ psychotherapy but very difficult otherwise. Therapists have tremendous power and knowledge and need to use this very carefully and like in any walk of life, some don’t.
Anyway, I could on forever on that subject…
Moving on, I have made tremendous progress more recently. Over the last twelve years, I realised that food was my major trigger, especially Fructose and then dairy. This worsened a few years ago, I think due to rising stress levels. So I suddenly lost that ability to eat most food.
I lurched from one thing to another and lost a lot of weight. So fast forward to a few months ago. My blood pressure was high because, I think, I couldn’t process the chocolate I was eating to keep myself going. The darker the chocolate the higher my blood pressure and heart rate went.
By the way I have been to many Consultants – Gastroenterology, Cardiac, Respiratory, ENT, Gynecology with various things showing up but not ME/CFS.
I was very unwell and getting worse. I have read and watched videos of numerous functional medicine practitioners and everything they said made sense but it wasn’t enough.
I had come across Nancy Klimas and had even watched Unrest but didn’t fully see myself in the ME/CFS community because I don’t have the Fibromyalgia part of it and I think probably because my brain wasn’t working very well.
I am going to have to stop writing this soon as I”m getting lost in it and if I lose it all I will be very disappointed as it takes quite a lot out of me, but not as much as it used to, to think about it and write it down.
So to very briefly outline what I believe has contributed to my improvement:
I came across an interview between Dan Neuffer and Brenten. You can find this on Recovery Stories CFS Unravelled. Brenten had terrible problems with food and crucially Dan had asked him whether he was really resting. In my desperate state I thought that makes sense – somehow I absolutely have to bring down my off-the-scale stress levels. Now, this stress wasn’t everyday stress – this was I am about to die and everyone is going about their daily business and ignoring me kind of stress – really.
Every night I thought I might die. I knew my blood pressure and heart rate was very high and it went higher, if I tested it.
So, despite circumstances not being great I just cut everything down in my life and focussed on relaxing, being mindful and anything I could think of to ‘normalise’ my life. It actually worked…
For the first time in years, I actually yawned and had a better/deeper/more restorative night’s sleep. The next morning I could feel something was different/better.
Later that day I tried some Olive oil on my food, which I hadn’t been able to eat for years (ulcers on my tongue, swollen throat). Nothing happened. With a bit of trial and error I have found I can now eat sunflower seeds, sunflower oil and olive oil.
I have maintained my better sleep. Even though I may not be sleeping longer hours, I am actually getting restorative sleep.
So, what I have to focus on is avoiding foods I am intolerant to – which actually stresses my body and puts my heart rate and blood pressure up, knocks me out as in makes me drowsy but stops me getting good sleep, eating nutritious food I can tolerate, manage my stress levels and take my supplements.
I take: Vit C, Multi phytonutrients, Magnesium 300g, Omega 3, Biokult probiotics, Macushield (for eyes) and Co Enzyme Q10 100mg daily.
Magnesium and CoQ10 are meant to be good for our mitochondria and ATP production, which I now think could be a crucial part of all of this…
Anyway I try to live in a sort of regular routine. I have absolutely pared down my life to the barest minimum.
I am lucky I live in a pretty, part of the world. I have a lovely son and two older dogs and work part time as a home care worker with fabulous people.
I watch videos, read articles etc when I can. Dan Neuffer has been invaluable. I have read CFS Unravelled and have emailed him a couple of times and he’s been good enough to reply
I do have Dr Sarah Myhill’s book along with many others like Stephen Porges Polyvagal Theory, which I’d like to finish!
However I am using absolutely anything I have previously learnt, whilst being sensible. I listen when Ron Davies says don’t try things that are dangerous.
ME/CFS is real. Believe me I tried the Oh I’m ok, I can actually eat anything I want to, with disastrous results. A home study proved that to be wrong…
If anyone reads this, I send them my best wishes. Even if others choose not to believe us, we can believe each other.
Went for a stroll with the dogs and started to think of all the things I left out like:
I come from a family that has all sorts of immune system issues. As a child and younger adult I would have had hay fever symptoms from hay dust and house dust. In my mid twenties (Chernobyl cloud passed over the area I was living in at the time?) I began to react to chemicals, perfumes. My face and arms swelled up when I ate a kabanos sausage.
As an adult I have always been prone to IBS. Shampoos and soaps also became a problem.
So, no perfumed products and avoid chemicals where possible. Also avoid moments grazing through the fridge and cupboards, eating a terrible mixture of whatever took my fancy, if at all possible.
I think the perfect storm, which catapulted me through some sort of non-return valve, was a combination of a genetic susceptibility to over active immune reactions, monumental stress, the flu and having had Glandular fever when I was seventeen.
Also a few years ago, at the same time as I began reacting to most foods, I also started bleeding. I would have times where I would spontaneously start bleeding for a few hours at a time . As in bright red, warm blood. I started taking a progesterone pill to stop the bleeding, which made me feel sick. I became anaemic. I had an operation to see what was going on and the surgeon found a fibroid and removed it.
I had developed an infection too and had IV antibiotics and two more courses to clear it.
A month after that I had the worst flu I’ve ever had. I was very, very unwell for a solid three weeks. My temperature was recorded by the doctor as being 41 degrees C. I had a terrible cough and headache.
It lasted overall for three months. I have never sweated so much – the bed was literally soaked.
After this a new symptom appeared. My brain would feel like it was melting if I ate things that upset it. It felt like one of those electric heaters with bars across that change from dark grey, to dark red and then to bright orange, as it heats up.
Well I felt my brain was heating up to dark red. When this occurred I’d get a terrible headache, my memory would completely go and even the most simple tasks were very difficult.
That was early 2017. Now in August 2019 I can still set it off by eating the wrong things. Last week it was Brazil nuts.
I have tried Ibuprofen and Antihistamines and they both lessened the symptoms but I started to react to them, so I’ve stopped taking them. Though they were useful at the time I don’t think it’s a great idea to continue taking them, as I think that’ll just bring more problems…
So instead I sprinkle ginger and tumeric on my food daily, in an effort to reduce inflammation.
Also, I live in Ireland, where they have developed various probiotics; Alflorex and more recently Zenflore. Zenflore are probiotics that influence the brain, aiming to reduce mental health symptoms, such as anxiety. Psychobiotics – very interesting. There’s so much emerging now on the gut/brain connection…
So, as I write this I am actually feeling ok. I am tentative in acknowledging this but after years of feeling totally and utterlyexhausted, I am currently not so tired. Even better is that it doesn’t seem to be a fluke.
I can make myself feel worse by eating the wrong thing but I am now able,again, to right myself. I can’t quite believe it.
However my brain IS working better and I can understand what I am doing.
I believe because I now have a degree of control over not triggering symptoms, I can eat a fairly healthy diet, I can get a good night’s sleep and there is more awareness of the condition, such as this website, Dan Nueffer’s, Dr Sarah Myhill’s and Gary Burgess’ Zonked Club, my sense of isolation is diminishing a bit. Feeling less alone and a little bit more (dare I say it?) in control has brought down my stress levels…
So, from being on a downward spiral, I now believe I am consciously on an upward slope. I decided a while back that if I just tried to be a small bit better next year, than I am this year, that would be a good target to aim for. Nothing overly dramatic, just steady progress in the right direction would be good enough for me.
My priority is to be a mum to my son and I need to be here to do that.
And obviously Jennifer Brea has changed so much with Unrest. Ok my brain isn’t perfect but at least I realised my error.
I would highly recommend reading the Medical Medium book and listen to his radio shows on Hay House radio. Really study all his books as well and you will have all the understanding that you need and all your symptoms will start to make sense to you, as they have done for me.
This man is a gift for us all. At age four, a Spirit started talking to him, the story is in the book, this Spirit calls himself the Spirit of Compassion, and gave this man the life’s work of understanding all the health conditions and what to do to recover.
I have been following his advise and everything I find works. It really works. And it makes so much sense to the last 30 years of CFS.
I believe this will bring you great progress
Blessings to your health and wellbeing
Regarding Ativan usage, it has helped me and been the only drug to relieve pain (except for opioids which made me very sick to my stomach). So I take Ativan and the pain in my legs, and my arms, etc are greatly relived.
It is a GABA agonist, I hope someone can explain how that fact might be helping with the pain? I think that action is instrumental in its positive affect for mecfs pain?
Ativan has been the one drug that has helped reduce my me/cfs pain. I think it is due to the fact it is a GABA agonist
Does anyone know how that works?
A GABA agonist increases the amount of GABA available to the body. This allows spastic muscles to relax, among other things.
The problem with short-acting drugs like Ativan is we tend to increase usage. This is also the problem with supplementing with GABA; we can get a rebound when the body recognizes we’ve had an increased level of circulating GABA and works to balance the equation. This can put us right back to pre-dosing levels, or even lower.
Microdosing might be the answer. As others have mentioned, start with very small doses.
Think of GABA as a calming agent and Dopamine as a focusing agent. Adrenaline, by the way, causes Dopamine release. People in pain release adrenaline. One thing that can sometimes help high adrenaline levels is antihistamines… but they’ll make you sleepy, and they don’t increase GABA. However, it’s been my observation that antihistamines help me with too much restlessness while in pain.
Nancy Klimas mentions antihistamines in her video Nancy Klimas ME/CFS Treatment Options Part 1, with regards to sleep. She also talks about being aware of sleep apnea.
I also get a lot of relief by tweaking my GABA levels. You might find this article interesting on the relationship between GABA and Glutamate:
Also, the book “Why isn’t my Brain Working” by Datis Kharrazian has a whole chapter on GABA (and, mostly how to enhance it naturally) that I found very useful.
Yes I also have Datis Kharrazian’s ‘Why isn’t my brain working?’
He also takes part in many of the health summits put out by people like Dr Mark Hyman and his Broken Brain series.
These summits can be watched for free for 24hrs after they’re aired. Dr Mark Hyman seems to repeat it in the new year. I kept missing bits because I would forget it was on!
However other people repeat it too, through their websites. They’re the functional medicine practitioner. Others are Jay Davidson who’s great on viral, bacterial, fungal infections and parasites etc
Once you get on to one set of videos then other people crop up. Dale Bredesen is another person who has been researching the brain for decades.
Sometimes I’m a bit daunted by the books – I do download them on my Kindle for PC, but I usually find it easier to watch videos or listen to podcasts.
I then have to listen to them all over again because I forget everything…
I’m slowly learning and I’ve graduated from scraps of paper to two bright pink notebooks, one downstairs, one upstairs into which I write everything down.
Beautiful message. Thank you Whitney for sending out this powerful message of hope to the many who are also severely ill and suffering. You are a beacon of Light to so many.
Thank you Janet for passing on this message, and to Whitney for every selfless and loving sentiment behind it.
I’ve been off the grid since writing the post that Cort mentions in this piece (shrouded in a protective bubble of focused healing), so I only became aware of Whitney’s message today. But I think of your family often. I am so grateful for all of your work, and for your collective tireless spirit. ?
Sending you all my prayers and best healing wishes. ?