Riding the waves

I am sick. Really sick. I was on an upswing (metabolically/mental health/whatever the fuck is wrong with me) from the beginning of August, unsurprising what with emigrating and all. I think I’ve coped pretty damned well considering everything. And then we arrived.

It’s lovely here, I mean really lovely. I have never in my life lived in a “nice” place. South East London to studenty Manchester to Salford, that’s it. And I have no problem with that, I’ve really enjoyed aspects of everywhere I’ve ever lived, never felt that bothered about the negative parts of them, and virtually never felt a deep desire to escape to the country/live somewhere a bit nicer. But our family circumstances have brought us here, to small town America, New England in the fall, and honestly it’s beautiful. The weather is like a cool but gorgeously sunny British summer, and there are literally hundreds of beautiful places to visit and explore and delight in.

But I can’t. Because a few days after we arrived I started to go downhill, and despite our best efforts it’s got worse and worse and worse.

Half the day I can’t walk properly.

Half the day I can’t balance or use the left side of my body properly.

Throughout the day I am having seizure/pseudoseizure type episodes.

Half the day I am so noise sensitive that I need to wear earplugs or headphones and music in order to tolerate being around anyone, particularly my children.

Half the day I have to wear sunglasses, even indoors, to deal with the light sensitivity.

Half the day I am unable to lift my son as I’m massively neuromuscularly compromised (by the way, I’ve realised that creatively getting around this issue as it has waxed and waned over the last 14 years is why I have developed a sling obsession).

Half the day I have little awareness of what I’m doing, so I’ve again had to hand over my credit/debit cards and get Peter to change the passwords on our amazon & paypal accounts. As yet I’m too scared to look to see if I bought loads of stuff on Mon/Tues/Weds.

Half the day I am really disinhibited. It’s humiliating so I am basically hiding in our room here so I don’t say anything stupid/insult anyone. I also have screaming/collapsing episodes if I experience any kind of sensory stress.

I have to carry two pairs of glasses with different prescriptions as my vision changes that dramatically periodically.

I am hallucinating again, although they’re very mild and as usual I’m under no illusions that they’re real.

Intermittently I am in astoundingly severe pain.

And much much much more, the symptoms are myriad.

The one day I attempted to go out on my own, driving during the day for the first time since we arrived (before a lot of the symptoms above got bad, don’t worry I’m not totally lacking in judgement), I ended up being transported to the ER because after having a lovely morning meeting some great new people (apparently far too much exertion), I came extremely close to blacking out and crashing my mother-in-law’s car with Joe in the back and then had multiple seizure/pseudoseizure type episodes on the side of the road. I feel very grateful that at least this time the hospital weren’t cruel and rude, I guess that’s what you get when it’s more of a buyer’s market in healthcare. Also grateful we took out the (ludicrously expensive) short term medical emergency coverage.

So basically it’s just like last year, except for two things. I’m not pregnant, so it’s only me who I have to worry about (apart from breastfeeding, which is fucking hard when you’re going through stuff like this). And I have learnt to surf. Last year taught me a lot of painful lessons, including that fighting for anyone to work out what is wrong with me is pointless. On Tuesday I literally begged the ambulance man not to take me to hospital, partially as I didn’t know if our insurance would cover it and partially as I have had a PTSD-style reaction to being around medical personnel for a while now, and frankly I didn’t have the energy. But I had no choice as I had very abnormal physical observations, couldn’t drive, couldn’t get hold of Peter or his mum and had Joe in the car. As usual by the time I got to the hospital I was much better (I’m guessing the 9g of salt in the litre of IV saline was a big part of that but anyway). So I let them take some basic bloods, gave a very basic history, and when they came back normal and I had stopped convulsing and could walk again we got the hell out of there and went home to try to go back to as much of a normality as our family ever has.

Probably I should stay in bed, but it’s terrifying feeling like you’re waiting to die, and although being up and about makes the symptoms worse I’d rather be living at least a bit. I am so grateful for the email-based CBT I did from May-August with a wonderful lady or there is no way I could have coped with this and stayed calm, but for the kids’ sake particularly this is so important. They’ve had enough disruption (they’re really enjoying being here by the way, hooray!). Peter is probably having the hardest time, caring full time for four of us again. It sucks for him a lot.

This time I’ve gone completely instinctual trying to manage these episodes, and to be honest it’s working to some extent. I’ve found if during an episode I just switch my brain off and do whatever my body tells me to I recover a heck of a lot quicker. But I need a lot of privacy to do this as it often involves making labour-type noises which is pretty intense, so it does mean I’m very isolated. Not a lot of fun. You may have noticed a heck of a lot of facebook activity because of this to try to distract myself! But brilliantly I haven’t allowed myself to do any googling about symptoms or treatment which is also a huge improvement on last year. I do think I know what’s wrong with me, both its psychiatric name and what I actually think it causing it, but I’m not 100% certain, so I’m not even talking about that much. I am writing a lot of observations down though, which is very interesting as I often don’t remember stuff that happened so it’s great to see it on paper and put two and two together on some things. I’m basically doing some informal observational studying, which is an oddly fun way to divert energy that would otherwise be spent being anxious and therefore making myself more ill.

I am getting pretty good at surfing i think.

I’ve also applied the observing-without-judgement and wave-riding to lots of other areas of my life with brilliant results. The first thing I worked on with the help of CBT and mindfulness techniques was the anxiety, which hasn’t stopped it being severe, but has massively reduced the impact of it on my functioning. I have found that with the pain episodes if I wait them out, do relaxation and sometimes eat certain foods, they eventually calm down on their own, and I’m so fed up of taking pharmaceutical pain relief I’ve given up doing so, which is helpful because we can’t afford me to do so here really. It’s also helped enormously in my parenting, particularly with Maya’s behavioural challenges (rudeness and screaming episodes particularly), and with helping the kids settle in to such an enormous change of pace and lifestyle. It’s helped in my relationship with Peter, which is understandably pretty strained at the moment, but not judging him or I in the situation, even when both of us behave really unacceptably, and trying to have compassion for us both has been really helpful. Finally it’s helping me manage being around some pretty judgemental people who have said some very very hurtful things about me behind my back in the past. I am working on forgiving them and trying to build relationship despite enormous differences.

So yes, a surfer, who would have thought?

And we do have a plan, at least kind of. I think I may in a moment of extreme highness have ordered a pretty comprehensive endocrine salivary testing/blood testing kit which may give us provisional answers as to whether this is physical or psychiatric. As long as Peter’s job goes through in 5 weeks or so we should have medical insurance proper and we plan to go and see a great neuropsychiatrist at Yale. So I’m focusing on trying to stay alive and as sane as possible in the meantime, be patient in the middle of suffering, and to love my husband and kids the best I can amongst the crazy. Those of you who pray, I’d appreciate a hefty dose of it!

Jen xx

(p.s. here is a lovely illustration which Amelie drew which is pretty apt for this post I thinkphoto 3 (6))


~ by jennkeast on August 30, 2013.

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