Paralysis and PACE

I’m dictating this to Google lying down so the grammar Mike be a bit off. that is an example of what I mean which I’ll leave in for the comedy value, comedy is probably much needed in this post. I want to get my experiences down from this week before I forget them though. In the circumstances I believe you’ll forgive a little rambling and bad grammar for now.

Caution this could give you nightmares

Here goes

_______

I get into the shower my legs are feeling a little wobbly.  It needs to be a sitting shower today. the water is lovely and hot I know it’s meant to be cooler but I like a warm shower. I don’t adjust the temperature. It doesn’t seem like a major crime. I get out of the shower, I’m OK, dry myself, sit on the bath for a bit get dressed
walking into the bedroom starting to feel weaker I get on the bed I am grabbing cereal bar incase that will help I lie down and go on Twitter to tweet about the dangers of showers and I’m finding I can’t lift my arm and I realise that feel like I can’t move at all I check everything and realise I can move my face and my fingers and my toes but that’s all

it is noon

I lie like this for a couple of minutes what is going on? fortunately my partner is working from home today I call down, she comes up.
I think I need an ambulance
but you don’t seem like you’re dying or anything
I’m suspicious because my partner has a research application deadline tomorrow  and 50 essays to mark. this is bad timing but that doesn’t mean i don’t need urgent help
If we go to hospital they’ll say it’s ME and not do anything. A waste of time.
I know she has a point but I’m very scared. this paralysis hasn’t happened to me before
we agree to wait 10 minutes then call the doctor. I feel tingly  like when my heart rate  has been  40  bpm  so  my  partner  puts on my heart rate monitor  and  uses  a blood pressure monitor  my heart rate is 65  so not the problem  my  BP  95/64  low but  higher than I often have. my partner feeds me crisps holds up a cup of electrolyte water
perhaps salt will be magic
I feel very cold like I should be shivering but I’m not
although I can see goosebumps
the doctor isn’t calling back
if it was the shower being cold should be good I’ll get vaso constriction.
I say if you can’t call an ambulance yourself you need one!
my partner calls the arrhythmia nurse, she’s not calling back either
My face keeps itching but I can’t move my arms to scratch.

my dog is very concerned she’s sniffing me. I can’t work out whether she can smell something on me or if that’s just her primary sense to try to work things out. she lies beside me resting her paw on my arm in a very human comforting gesture. It would make  a great photo she gazes up adoringly. obviously I can’t take a picture. I can’t move my arms.
After a couple of hours the gp phones back the immediate answers i need an ambulance. for some reason this also takes a long time.

I seem to be a low priority.

I wonder  if this is something  time matters for?! doesn’t seem like a stroke  both sides the same

I watch clouds move across the window. This too shall pass. This too shall pass. All shall be well all shall be well  and all manner of things shall be well. I’m not convincing myself. This is terrifying.

I think it is  about 4 p.m, 4 hours unable to move, the paramedics arrive. I attempt to hold back mentioning ME I know things won’t go through well as soon as I do. I mention pots. I just had a shower that can make pots worse. paramedic adamant pots can’t cause paralysis. to me it does feel the little pots like but strange to be lying and still not able to move. do you have any other diagnoses? She presses it.
in the end say ME
oh this this sounds much more like a me flare
there’s a keen  trainee paramedic: what is pots?
pots is unexplained tachycardia
I think no that’s s not really what it is.

lying there unable to move I’m explaining to them the physiology of pots
they lift me to my feet connected to the monitors. I can’t support myself but there is a tachycardia response. I feel like my legs are giving way nauseous  and say all this is what I felt like on the tilt table
but your blood pressure is going up not down
feel there’s an inference I didn’t explain it right but I’m thinking interesting maybe I’ve go hyper adrenergic pots I’ve not been told that
they have no idea what’s going on they work out that if they move me in positions I can stay there but I have no ability to decide to move
they have never seen this before

They want written medical details. My partner hands them a folder of letters coincidentally containing research paper about pots in m e. the trainee paramedic curious reads it in the ambulance amazed at what my heart rate can do. I look out the window recognising bits of shop signs

get to hospital everything seems to take ages
The male nurse wants me in a gown he puts it on the bed and starts to walk away. Hang on has nobody told him I can’t move?! My partner queries this. Can you do it?
No it’s not a one person job. Because Jenny can’t move

They move me into a sitting position my throat is constricting. I feel like I can’t breathe. they lower me back down flat and I can breathe again ok

Waiting I’m thinking about Whitney Defoe and those of you who have put up with this level of incapacity for years. Is this me now? I have no idea how to process that prospect

the nurse has a hard time getting any blood from me I say in a jokey tone maybe I don’t have any blood do you test for blood volume?
yes we’ll test that

My bladder is really painful from trying not to pee. I worry I’ll lose that control. I say and the solution has to be a bedpan two nurses manoeuvre me. My partner goes to get food. It’s a very weird sensation trying to pee lying down. I call out to say I’m done. No one responds. The bedpan hurts my back. I can’t adjust myself at all. So much liquid has come out it’s also on my skirt and the sheet. I’m calling out. I’m crying. My partner comes back and can’t find any staff. She presses the buzzer which of course I cannot press. It still takes a while for someone to come. It has been around 15 minutes. They have to change the bed.

Staff can’t keep in mind that I can’t move. Keep asking me to do things.
the constant beeping is overwhelming. I try to control my own monitors. My breathing rate keeps beeping too frequent or too low. Breathe in 1 elephant 2 elephant breathe out 3 elephant 4 elephant 5 elephant 6 elephant beeping stops it likes the speed. oxygen 100% worth remembering the breathing rhythm

The chart on the wall says green and purple tops are doctors. People have blue tops.
I try different relaxation techniques. Yoga nidra. Right thumb, index finger and so on. In this context the body focus is alarming me more. My panic is not very stoical. I try to imagine the worst and then how I will overcome it. All I think of is at least with Amazon Prime you don’t have to press a button to watch the next episode. If someone sets a series going I will have something to occupy my mind. I go back to my breathing not hopeful because mindfulness is usually challenging for me. At the moment it works the best,just keep breathing don’t think about anything else.

At some point a pretty young woman in a green top comes over. At last it’s a doctor. I’ve lost track of time but I think six hours since the paralysis came on.

6 hours paralysis before I see a doctor

I’ve explained my situation several times by now. I’m exhausted and want my partner to explain. I’m getting a bit muddled but nowhere near the worst brainfog I’ve had. I try to emphasise that this isn’t normal for me. What could be causing it? She’s inclined to think ME. She gets me to push really hard. I can tense muscles but they do not move my limbs. I can grip her hands now, my wrists and ankles are moving now but nothing else has come back I cannot move my arms or legs. She declares that my muscles are strong. Very positive about it. Well I’m not deconditioned so that isn’t the issue. This came on suddenly at noon. What’s going on is clearly neurological. My uni knowledge of neurology is too rusty to think of what though. She can’t think of any neurological disorders it fits. My partner and I both chime in but ME IS neurological! Oh yes of course.
I don’t feel convinced
It doesn’t fit POTS. Your blood results are  healthier than most of the staff here. Inference that all is well really.
I think well that’s missing the obvious that they can move normally WHEREAS I CANNOT EVEN ADJUST MY POSITION IN BED!
She tells me it’s a ME relapse. I burst into tears. She’s confused why are you upset? It takes a while to be able to speak.
Because that means you aren’t going to do anything about this and I have no idea how long it will last. People are like this for years
Now I look emotionally unstable.
Have you tried talking therapies? People with ME say it REALLY helps
I wonder to myself how I missed you all saying that!
I have tried talking therapy which I’m not adverse to in context. I’m a psychology graduate, I’ve done initial counseling training. I don’t tell her that background.
I explain I’ve had counseling through a ME charity and used to see a occupational therapist at the ME Centre. It wasn’t bad but didn’t particularly help my ME.
I need to eat something to take my normal medication. She says she’ll come back later and try to get me moving.
I wish I could talk to you guys. I ask my partner to ask pwme on Twitter what is wrong with me.
No
Another gap maybe 7:30pm?
Two staff  have to help me walk. They are holding my weight up. I feel terrible. I try really hard. I’m still not convinced it’s ME relapse so go along with the plan. Perhaps this works? I can sort of shuffle 4 tiny steps with my weight supported . It feels like POTS concrete legs. It is a terrible effort. My legs are shaking. My partner runs over to catch me. Too late my legs  buckle under me and I collapse to the floor. A wheelchair is grabbed. Now this is something that does happen to me. When my POTS is bad.
Doctor and nurse seem to declare it a great success. I worry about their mental health. There seems to be a complete disconnect between reality and their interpretation of events. it definitely isn’t the right bedside manner for me. They appear concerned that I’m not thinking positively.
But you didn’t see me walk normally this morning! I say
Since my walking was such a great success the plan to discharge me was put in motion. Having done nothing for me.
I ask for IV saline.
No your electrolytes were spot on including potassium. If you have more you’ll just pee it out.
What about my blood volume is that OK?
Some confusion. Well if your blood pressure isn’t low so there must be enough blood.
This has some logic and the stress of hospital has raised me to an unusually normal blood pressure.

My partner tells her Jenny knows her own body if she says it feels more like POTS than a pure ME relapse  I think we should listen

No this definitely isn’t POTS. If you stay in hospital you will be kept awake all night

I suspect this is true

But I still can’t decide to move. Can I exist at home?
I say I’m too ill to make the decision
It’s sort of evolves that I am going home I have to go home in a hospital gown after the bedpan incident. I feel undignified everyone is oblivious to this.

My partner queries whether this would be the case if I had come in without a ME diagnosis.

a strong Porter is found.him and my partner move me  into a wheelchair then from the wheelchair into a taxi. Taxi driver and my partner get me out of a taxi. She gets our wheelchair to get me into a the house and my partner and our lodger get me onto sofa. is weird to think I won’t be able to change anything if my temperature is wrong. I’m angry that they sent me home like this. I still can’t move my arms or legs.

I lie in the dark with the TV on quietly.

It is 11pm.

I suddenly realise I can move my arm. I check everything. It has all come back instantly movement wise. I still feel very ill but I can move. I realise now that this is not a small thing! Earache and some neckpain return at the same time. I had had earache the day before but it went completely during the paralysis.

In case movement goes again I quickly go upstairs. My own bed and a toilet. Again not small things. I walk upstairs completely normally in a seconds. We have very steep stairs.

I still feel awful in my head. A lot of weird neuro type sensation. I’m too ill to sleep and stay awake all night. I debrief with pwme on Twitter. I feel a bit better emotionally. No official talking therapy required just people who understand the terror.

I get through MillionsMissing day. Fortunately I had foresight to setup buffer and round team to tweet on my behalf if I was having a bad day. I hadn’t expected that the day would be this bad though but I’m well enough to check how it’s going occasionally I feel the need 4 million missing to work much more intensely. I wonder if ME needs to be my life’s work even if I get well again. I wish I’d done a different degree. If there’s a skillset overrepresented in ME it’s psychology!

I ask about my symptoms on Phoenix Rising. One person gets the same paralysis unable to move except face, hands, toes. Other people offer intelligent opinion.

My head symptoms haven’t gone another poor night. Fall asleep woken by throat constriction. Early morning 26th neck pain is increasing. I feel nauseous. Feel more feverish.

Phone doctor 8am on the pips. Doctor will call you.

Brushing my teeth sitting down my heart rate monitor is flashing. Oh 126bpm better lie down. Have I taken ivabradine and bisoprolol? Yes sitting heart rate 126 on 2 drugs to lower heart rate.

Doctor calls back. Sounds like you’ve had a terrible time. I need to see you face to face.
I’m too ill to come in.
Are you sure?
Yes. And everyone is telling me it’s ME . I will get worse if I come in
Only housebound people get home visits
I am housebound
But I can see you have been in before
Partner grabs the phone
Jenny has come in before but she is now worse. When she did come in before it made her worse for days afterwards even though she was better than she is now
We don’t have many resources for home visits (this doctor was just talking to me about my paralysis two days before)
Partner pulls out the trump cards
But the NICE Guidelines state that ME patients need home visits. The paramedic said Jenny needs home visits

Lunchtime I get a home visit from a different doctor. He has seen me before,  walking well. Im exhausted so show him my Phoenix Rising post as quick explanation. He wants to know what people with ME make of it. He doesn’t think of you as vexatious he thinks you have something helpful to contribute when he is clearly flummoxed. He’s interested in the enteroviral theory. He says we’ll probably never know exactly what happened. We seem to agree current virus likely. I will get a neurologist referral if it happens again. He doesn’t do anything radical but treats me like an intelligent adult. Painkillers, rest, sleeping pills (by now 3 nights hardly any sleep). No requirements for positive thinking or pushing myself to do more.

Friday morning (today).
Still feeling unwell but not alarming.
I am very smelly and need to wash again. This is difficult mentally after THAT shower. Now I need my partner to help. On Tuesday I washed independently. Today it was difficult to get out of the bath even with my partner lifting me. I have lost a lot of muscle power in half a week, too quickly for deconditioning. I think this is now ME PEM from hospital. It would be impossible to prove.

I can move though. If you can move too appreciate it.

———

I’ve tried to tell this story how it unfolded without too much meaning making. Hopefully the contrast is clear though. I would be surprised if the hospital doctor wasn’t influenced by PACE and it’s repercussions. On the other hand, my home visit doctor models how the patient doctor relationship can benefit from a patient centred, respectful approach.

This horror  cannot continue. This cannot be what ME patients go through every time we need emergency treatment.

[Edit: The reason I recorded this is that I feel the  experience illustrates an example of the dark side of what the  PACE trial leads to, the knock on repercussions of dubious research, when you’re in an emergency situation. PACE was a large poorly designed UK study into CBT and Graded Exercise for CFS/ME. Despite long term null results it has been popularly interpreted as meaning positive thinking and getting moving are the best approach to ME. When doctors who are not specialists (eg in ER) look up our condition in a quick search they are most likely to see recommendations which spring from the PACE trial, especially if they are in the UK. Consequences for ME patients are diverse.

I suggest that we are less likely to receive adequate medical tests (even for new, dramatic symptoms) because our condition is perceived as psychosocial. Also I perceive that because what we’re experiencing is seen as psychosocial, very diverse symptoms which overlap other conditions can be manifest without undue alarm (there is little onus to detect why it is happening at a biological level). It will also quite logically be perceived that treatment is not suited to the ER if it can be attributed to ME. In other words it is acceptable to send a ME patient home, severely ill without any treatment or explanation of emergency symptoms. In this sense the ME patient is in a worse situation than someone with no diagnosis.

I have decided not to edit the grammar because feedback was that it gave a better sense of the raw experience.]

[Edit May 2017: a year on I now have confirmation of abnormality in an EMG test. My cardiologist felt it needed to be followed up so my GP referred me to a neurologist. Now my results indicate myopathy or a channelopathy (such as periodic paralysis) the neurologist is referring me to a muscle specialist. I’ve been told to expect a muscle biopsy or DNA testing.

Although the NHS can be slow for everyone, I do believe that I would have got answers more quickly without a ME diagnosis.]

[Edit May 2018: I seem to have found a potential genetic cause for Atypical Periodic Paralysis. I’m waiting for a doctor’s appointment to follow this up, but a relevant genetics expert has confirmed it is a good candidate to explain my symptoms]

45 thoughts on “Paralysis and PACE”

  1. Thank you, Jenny, for making the effort to write.
    The emergency department and paralysis are two very worrying aspects of the ME experience for many of us.
    It is rare for someone who has so recently been through an experience like this to be able to describe it so fully and clearly.

    Liked by 2 people

    1. Yes I think actually a little weird I can. When my ME has been much less dramatic I’ve had more brain fog. It’s one of the aspects that made me reluctant to be dismissed as just a ME relapse. In my experience I wouldn’t be able to organise my thoughts in that case

      Like

  2. Hi Jenny,

    I get exactly the same ‘episodes’ I just call the brain attacks because I get facial droop on the left side as well as the overall weakness you so well described, changes in heart beats that are different feelings to pots hr affects… And much the same response from doctors and a&e’s – even the neuro ward… Just said ‘probable pots’ but filming it via partner and feeling it is definitely isn’t regular pots features and is very scary.. I saw another local neuro who said it was migraines with a very rare aura and then we saw a London neuro who diagnosed it as functional neurological disorder – saying he sees it a lot in pots patients, they don’t know why the brain decided to dysfunction and temporarily stop motor and sensory functions. Who knows if this is correct??!! I just try to keep a diary of the episodes to try find a pattern. I find neck movements definitely are a trigger for me. Xxxx

    Liked by 1 person

    1. Really useful thanks . I definitely felt more POTS like but wasn’t listened to. Felt virally after so probably Dysautonomia reaction to virus? POTS AND ME both hate viruses. The other person I came across with same is also in the POTS subgroup of ME. Do you just wait it out? Does saline help?

      Like

      1. Yes now we are told it isn’t stroke or will be degenerative or permanent, I just wait it out – but I do think that even the London neuro doesn’t really know what’s going on and FND is a last resort diagnosis. I find they happen to be on average twice a week and last around 6 hours. They were more frequent last year and much more brutal and violent when my pots was less controlled. I started to control my immune system reactions with many histamine and mast cell drugs and my pots improved to the point I can sit up in bed now for a few hours. The brain attacks and paralysis and weakness and head pressure and facial and neck pressure eased a bit. I don’t think it’s either pots or mast cell or immune system that are causing the brain attacks / FND/ migraines (whatever the hell you want to label it!) there is definitely some underlying cause that the Drs just haven’t researched and understand yet.. There is definitely a link with pots and other stressors such a viruses, having period, immune flares that make the brain attacks worse. I just keep a diary incase there is a slow decline in function that I need to prove at a later date. When the Drs and neuros see you for the first time, they assume the way that you are functioning is normal to them and don’t pick up on subtleties that your slightly weaker, voice is hoarse or weak, coordination off, ect ect…. Plus get partner to take vids and photos when having the episodes especially if they are bad. Like I said before I find moving my neck, especially doing things like stretching and yoga like moves can bring on the attacks.. No one seems to know why. I hope you get more answers and checked over properly by neuros and mri ect. Xxxx good luck xxx I know it’s horrible when it happens I have a little protocol for my partner to follow and make me comfy so he knows how to help me until it’s passed. It helps if you can’t communicate well at the time xxxx lots of love xxxxx

        Liked by 1 person

      2. Sorry forgot to say that salt and normal pots measures don’t usually make a difference. I find putting a hard neck collar on helps me to ease the symptoms. I can take it off during an attack and the symptoms come back stronger. But I also forgot to say that when I had a particularly bad episode where it even kindly took my vocal chord nerve function.. The a&e then did a ct scan which they said was ok not a Tia.. So that is why I have a little more faith to wait it out now. If you keep having repeat episodes I would keep going back until they check you with ct and mri xxxxx

        Liked by 1 person

  3. Poor baby! That sounds awful. Unfortunately, the first sign it was going to be awful was this sentence: “pots is unexplained tachycardia” – in other words, POTS is in the category of MUS (medically unexplained symptoms) – you had medically unexplained rapid heart beat. Ptooey! To the contrary, Peter Rowe of Johns Hopkins published an article about NMH and POTS and CFS (Fukuda 1994) in the Journal of the American Medical Association, Fall 1995. We do know what is happening, although I guess it is fair to say the CAUSE is unexplained.

    Greg Crowhurst talks about this – nobody mentions the paralysis. My left leg refused to work for a year – and then, after a year of using a brace and a wheelchair, suddenly it was just fine. (I was on Ampligen then; that may have had something to do with it but i don’t think so.) After my big day on Wednesday, driving the 4-5 hours from Tahoe to San Francisco Tuesday, going to the rally Wednesday and then driving back, I had a lot of trouble walking Thursday and Friday (yesterday) – seem a little better today.

    I’ve had periods where I couldn’t move at all, but they never lasted that long – the worst was lying in bed wanting to take a drink of water, with the water on the nightstand next to me – but I couldn’t move to get it for 15-20 minutes – I could see the clock on the cable box, so I know it was that long. Terrifying. Used to happen a lot.

    This is one complex disease. Do you think they might have treated you better if you had said you have MS? [You can answer that question next month! Or the month after that! Just rest now.]

    Liked by 2 people

    1. Good idea, about mentioning MS as a prior suggested diagnosis. I have an arachnoid cyst on my thoracic spine to mention also which is supposed to be safe to leave there. It’s just that my legs have been worrying me lately and if a doctor sees you shuffling along a few inches at a time after knowing you for 10 years walking normally, you would think that they would at least ask “hey what happened to you?” Not my doctors.

      Liked by 1 person

      1. I’ve also recently had dna results which I paid for myself to contribute to Nancy Klimas’ study and they actually do include MS risk (and myasthenia gravis and SNPs associated with ME/CFS, RA, lupus etc so probably in reality a general tendency to autoimmune conditions rather than undiagnosed MS specifically). This could be useful information to mention to doctors though.
        At the moment I’m interested in whether the problem could be to do with acetylcholine receptors/ autoantibodies. Could this also be related to my more common walking problems with POTS? Recent research shows issues with acetylcholine receptors in ME and POTS and from the incomplete dna results I have this is plausibly a problem for me. Myasthenia gravis patients have treatment for this already. I’ve asked my POTS Dr about mestinon before (sometimes used for POTS but designed for myasthenia) and he said no. Perhaps with appropriate SNPs I’ll get a different answer?

        Liked by 1 person

      2. I am in the same gene study as you then but I have no info about what snp’s they look at, got a link?

        Like

  4. Oh Jenny how absolutely terrifying. Thank you for sharing this story, I think it is so important that stories like this are told.

    There are good doctors out there, but, as you say, I think many of them are overly influenced by PACE presumptions, and sadly that has consequences. What rot.

    Sending hugs. xx

    Liked by 2 people

  5. Here’s a tip. ME is not CFS. PACE is on CFS, not ME. Stop the ME/CFS fraud rather than complaining about that which happens as a result.

    Like

  6. As others have said, well done for recording this horrible time in such evocative detail, Jenny. I hope you continue to improve and do not get a reoccurrence of the paralysis. It sounds terrifying.

    Liked by 1 person

  7. Thank you for taking the time and the energy to write this. This is horrible and I have had similar experiences in hospitals over the course of the past 6 and a half years of being ill, struggling to seek help and answers…all the while having similar episodes, begin treated without any treatments, sent home, feeling dismissed, hopeless, scared and thinking, “this is my worst nightmare and it continues without respite.” The more stores i read, the more frustrated and angry I feel about how all of us are suffering.
    I am so sorry you had this experience.

    Liked by 1 person

  8. Really sorry this happened and hope that you are doing as well as possible since. I have come across mention of episodes of temporary paralysis among people with (very) severe ME (without POTS but who knows, could have undiagnosed POTS too in theory). I’m grateful that I haven’t experienced it and am so sorry you did. Perhaps the more severe patient support groups would be able to tell you more? Your partner sounds just fantastic, but I know it’s very hard for her too. Like the sound of the doctor who treated you like a human at the end. A&E is a rough experience – there’s plenty of dismissal even when you don’t have ME, but the last thing you needed when going through something so traumatic was more direct experience of health professionals’ lack of understanding of ME and POTS. Take good care and hope you can surround yourself with some of the people who do care and understand.

    Liked by 1 person

  9. PS Another thought after reading your Phoenix Rising post and the discussion that followed: I think the viral theory makes a lot of sense, and it may be that this tends to happen to those with very severe ME more because they are more susceptible to viruses/less able to clear viruses, but that in theory this can happen at any severity of ME. (Same could be true of POTS.) [And by the way, I had viral meningitis and could still speak – I wouldn’t use that GP’s rule of thumb. Get yourself to A&E if there are signs of meningitis. Mine was dismissed by a doctor on call the day before as a migraine or vertigo, despite my never having had either. They were only marginally less dismissive in A&E the next day, until lumbar puncture confirmed severe infection. And so began my ME…]

    Liked by 1 person

    1. Definitely aware that people who have very severe ME do have episodes unable to move. Sort of assumed that this wasn’t so sudden but could be wrong.

      My partner’s glad you think she sounds fantastic. Offline friends think she came out badly in the post. These things happen to family as well as us she was just being an accurate Cassandra. She now has similar symptoms (minus paralysis!) eg feeling generally unwell, headache going into top of neck. This makes virus idea more plausible. My brain just had extreme reaction? Makes me feel less like paralysis could come back any minute.

      Like

      1. Sorry just reading this now. Well that is interesting that your partner got sick too – as you say, makes the virus idea very plausible. I understand why that could make you feel vulnerable – I’d say there were a few factors that came together, like a (very im-)perfect storm. And yes, I really did think your partner sounded wonderful. I was literally cheering her on as I read. She was on fire in the hospital. There’s always some to and fro at the beginning of one of our crises, that’s just how it should be – we’re not always right, neither are our partners, we have to figure out together what to do and there are no right answers. You might have made different decisions with different rationales and they would have been OK too. I enjoyed reading about another couple problem-solving through it. It’s not easy to be an assertive advocate while also remaining calm, being emotionally supportive to you and keeping everyone onside, balancing your needs and hers. To me, she did a superb job. And it’s fairly thankless, as the outcome for us tends to be fairly shitty no matter what. But hopefully you felt supported. Hope the repercussions on her work were manageable. Wishing you both all the very best from another couple…and here’s to better health for us all.

        Liked by 1 person

  10. Reblogged this on The Disability Depot and commented:
    I had to share this harrowing experience Jenny conveyed on her blog. I myself have never experienced full paralysis and hope I never do, but I have had more than my fair share of frustrating experiences with hospitals and doctors who are condescending and clueless, as well you know.

    My heart goes out to Jenny and I hope this experience remains an isolated incident for her. These kinds of experiences are exactly why people with ME must stick together and share what works with the community at large. We need each other and the few treatments we find, either alone or with health care providers. We also need the emotional support we can provide one another, as no one understands quite like another person with ME, even if we all experience this disease somewhat differently.

    Liked by 1 person

  11. Yeah I’ve had a very similar experience a couple of times. Very scary. And the uncomprehending, trivialising optimism of the medical staff was exactly the same. Well described.

    Like

  12. Kathy sorry to hear you’ve experienced similar. Do you also have a POTS diagnosis? Although this paralysis isn’t POTS I’m generally finding the people who experience this have POTS (and sometimes ME as well).

    Like

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s