Advice Getting Through A Physical And Emotional Crash

[Batik]

I've been doing fairly badly lately. ME's not great, gabapentin fiasco at the start of the year, then gallbladder surgery, then worse ANS symptoms including several collapses, culminating in a trip to Accident & Emergency last Friday, where it turned out that I had a bladder infection too. (According to my latest urine sample that's now gone, but I'm still having problems with bladder pain and urgency, and then there's the diarrhoea too. Possibly just IC and IBS.) On Tuesday my partner left me. I'm doing better than the first two days, where the PMS hit badly and it was wall-to-wall panic attacks, but I'm still doing pretty badly. I'm exhausted, terribly upset, going between being flat out in bed and running on adrenaline, finding it very difficult to eat. And I'm desperately scrambling to sort out welfare benefits so that I have money to live on, and social services so that I can get more care in the home, both of which are a nightmare to deal with by anyone's standards. I was already housebound and largely bedbound before this happened.

I don't have a diagnosis of POTS yet, we were going to try to get me to a specialist at some point, although my symptoms and home BP/HR rate readings are highly suggestive of it. So I'm not on any treatment for it, though I do sometimes make myself an electrolyte drink, which at the moment is the very basic version using low-sodium salt (so there's plenty of potassium). I haven't been managing to get that down me, though, I'm barely managing to get about 600-700 calories into me and generally not doing well at the whole eating/drinking thing.

I'm already getting good advice about the emotional support side of things, and we're strategising about the food, but can anyone give me any tips to minimise the damage physically? I'm in the UK and using the NHS, if anyone is going to suggest specifically medical stuff. For instance, my friends are urging me to come out with them tomorrow to the knitting group (sans knitting, or in my case quilting, but no one cares), just for the sake of getting company and fresh air. I can't figure out whether it's worth the energy expenditure, considering how exhausted I am sometimes getting and that my ability to pace myself has gone out of the window. They'd be giving me a lift there, and hopefully we'd be able to use the sofas at the cafe in question, which has nice natural lighting and isn't too noisy as such things go.

[hholmes13]

Hi Batik, I am really sorry you're having such a rough spell both physically and emotionally. It sounds like you're under an incredible amount of stress right now. I don't have much in the way of advice for you. You asked about going with friends tomorrow...if you are feeling up for it, I would try to go even if it's just for a half an hour. The isolation that being so ill can cause can really take a toll on your mental health. I know for me, when I was in the midst of my horrible spell this year, it felt so good to see people and have some kind of normalcy. For me, it was great to take my mind off how awful I felt. However, you have to decide if you have the energy and ability to deal with getting out. Hang in there! Sending positive thoughts your way!

[songcanary]

When I went through stress similar to yours, my body just needed complete rest. And I mean complete rest. I wanted to go out, but physically it just wasn't possible because I was so weak and it would have made me worse. We are all so different, I had to learn how to read my symptoms and intervene before I crashed. It really helped a lot, now I can do that and I am able to live normally for the first time in two years. I hope you feel better soon!

[Batik]

Thanks for the support, everyone. So far we have one vote for and one vote against going out tomorrow! Any thoughts on how to calculate whether I'm up to it? My current thinking is that I'll see how I'm doing tomorrow, but I'm leaning towards going. Mainly because I'm more worried about my mental health than my physical health at the moment. I know I only asked advice about the physical health stuff, but that's because I already have sound advice on the other: talk to friends, talk to helplines if need be, mainline silly TV shows, mess around with fabric a bit when I'm up to it (though no quilting my hands into another RSI attack, of course), general taking care of myself.

The problem with the physical stuff is my body is absolutely all over the place right now, and I'm finding it very hard to think my way through things, let alone work out how to pace myself. I've had a short set of Bowen technique treatments provided free through my local ME group, and when my Bowen therapist was here on Thursday, she commented that my shoulders felt absolutely rigid, the worst she's ever seen them, but I was feeling practically no pain at all. Which is what made me realise that I'd been running on adrenaline for three days straight. I'm trying not to pace when I'm on the phone, but that's the main obvious thing so far. Should I be going for lots of salt? Is there any particularly easy way of getting lots of salt into me? I find that wrapping myself in my electric heated blanket is good when I'm in a basic immediate crash, the sort when you're chilled and ache all over. Does anyone know if that's likely to promote healing during this sort of episode, or should I not bother unless I'm actually chilly?

In terms of food, I'm vegan, that's probably worth knowing. My friends have been saying that at this stage, never mind nutrition, just get anything we can into me. My throat no longer feels closed up, but my appetite is still almost entirely absent, I'm finding most foods unpalatable and/or far too strong-tasting, and I'm not up to cooking, so we're reliant on what's in and what the support workers can make for me. Boiled carrots and potatoes have been relatively popular so far, although it's not exactly what you'd call substantial. I've been having diarrhoea for the last few days too, not sure why, quite likely the stress (although I do wonder a bit, as the hospital told me to watch out for that when they discharged me with the UTI a week ago).

[Batik]

By the way, totally random question: how many people with POTS make a decent recovery or partial recovery once they get treatment? I'm suspecting that this forum is biased towards the people who aren't doing so well, since they have more need for a support forum, as such forums usually are (the recovery cases being off doing other things). I could really do with some hope for the future right now, and after 15 years of having ME, which is untreatable, the possibility of having something which can actually be treated is almost unthinkable.

[Katybug]

Hi Batik,

Sorry you are having such a rough time of it. The statistics I've seen show that 2/3 - 3/4 of POTS folks recover...so, there are lots of folks that do recover.

Did you say your throat felt closed up? Have you been checked for food allergies and/or mast cell disorders? Could there be something you're eating, drinking, new meds, etc. that you are reacting to? I get rashes and GI symptoms to several of the foods I have sensitivites to.

As for eating, I would keep going with carrots, potatoes, sweet potatoes, butternut squash, canned pumpkin (you can heat that up with some pumpkin pie spice mixed in). All of these can be cooked in the microwave too if thats easier than boiling for you, and they all lend themselves to being salted. You could also try some popsicles to get some more fluids and sugar in you.

Hope things are looking up soon.

Katie

[Katybug]

Oh yeah...as for going out with friends...only you can make that decision. When I go out to lunch with a friend, I know I may be out of commission for the rest of that day and the next, but I plan for that. I need tons of rest to keep my symptoms in check, but, I also find my time with my friends as healing as anything else I am doing. So, I guess my question back to you is: Do you need physical or mental healing more right now?

[Batik]

Mental healing, definitely. I'll see how I feel in a few hours. Right now it's always bad when I wake up, my mind's on a hamster wheel.

It wasn't allergic type throat closing up, it was the sort you get for psychological reasons, when it hasn't actually closed up, it just feels that constricted. I think mast cell problems are quite possible, but it all came to a grinding halt when I tried to get it investigated due to a crap dermatologist (NHS, before anyone tells me airily to get a second opinion - I don't have that option). Hopefully the specialist I plan to see for the probable POTS will be good enough that she can get me assessed for MCAS if need be. You can't get food allergy testing done over here.

The food suggestions are very American, half of it isn't stuff I can actually get over here, and sweet potatoes take far longer than we have available for anyone to peel, but thank you anyway! I actually managed to get a proper meal down me last night. Pasta with a tomato sauce we'd put vegemince into, so hopefully quite nutritious, and there's two portions of sauce left over. I even got vaguely hungry last night and nibbled on this and that. I hopped on the scale this morning and I'm only down a pound or two, thankfully.

[Libby]

Oh, the differences between US and UK food selections. When I was in London, I had a few of my co-workers try Gushers - gummy fruit flavored kids' snacks with a pocket of fruity/sugary syrup in the middle that 'gushes' out when you bite down. Their reactions were hilarious. Probably as hilarious as mine while trying marmite, haha.

What about take away/delivery? I know that noodle shops like Wagamama can have some nice vegan options. If I recall, their portions are rather large - could last for a day or two.

It's been a while since I was in the UK (study abroad in London, pre-POTS - I had the best time), but I remember being impressed with the vegetarian labeling on food packaging. In the US if you want to know there are no animals/animal by products, 98% of the time you'll have to read the label (it's irritating)...I can't recall, is it the same with vegan? Could you easily pick out a few meals that aren't too taxing to prepare for the days you're not feeling up to cooking?

The perk to a lot of the pre-packaged stuff is that the sodium content is usually high.

As for the social thing, I think you should go if you can. One of your biggest stressors seems to be social. I think it will help to be out with friends - it'd be worth the price, for me at least.

[Batik]

I actually stocked up on some prepackaged stuff when I collapsed the first time, on the 9th. Then I developed a UTI shortly afterwards, and naturally everything that I had bought was spicy. Only slightly so, but enough to irritate my bladder, and indeed the soup I had already consumed was probably doing a good job of that. There are a few things around, but yes, they tend to be pricey. Take-aways even more so, and money is going to be very tight for a while. I might stock up on tofu and noodles from the local Chinese supermarket, though. Not the cheapest thing around, but nowhere near as bad as ready meals, plus they're bland and easy to prepare. I'm getting better at eating, at least, and should be getting enough support that I get cooked for.

I made it out today! I was a bit dopey, and the Auditory Processing Disorder always makes hearing a problem as the cafe has enough background noise, but it was very nice. There were five of us, the rest knitting industriously, plus a random bloke who was sitting on one of our sofas but eventually fled - and that was before we got to the gynaecological discussion! I was a bit tired on returning but seem to be OK. Though I do need to rest properly now, as I've just spent three hours chatting to a friend, including fishing out quilting blocks and discussing how to quilt them, which was most therapeutic. Head is definitely improving, though I'm sure the crash is still due.

Any thoughts on how much water I should be drinking? I suppose I should keep making up those drinks with low-sodium salt. My bladder's still sore on and off, and by now it's just gone nine so I don't really want to be drinking too much, in the interests of not running to the loo all night.

I don't think it's so much that being social stresses me out, as dealing with horrible things like social services (who are already showing signs of screwing me over yet again) and welfare benefits. They stress everyone out, and they are absolutely not sociable.

P.S. Marmite is fab, but not all Brits like it. And admittedly I don't eat it often myself.