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
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.
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]
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