Tuesday 16 August 2016

Life under the Dysumbrella


I am asked, pretty much on a daily basis, how I'm feeling, and/or what it is I have again.  It's not easy to describe, there's no one-name for what it is.  Even my autonomic specialist says that the labels or names given to this cluster of disorders is possibly going to be replaced when they realise what it is that connects them all.  But for now, it's a mouthful.  So how do I answer?  Well, when I'm asked how I'm feeling, most of the time I say "ok" or "good" because it's easier and also because it's what most people want to hear; sometimes I say "pretty crap" because, generally, that is how I'm feeling, but I would only say that to those who genuinely care about me.  Usually only my family hear about it when I'm feeling worse than pretty crap (and that's much more often than I care to admit). What do I say when people ask what it is I have?  This also depends less on how well I know a person and more on how much time I have.  I mean, if I say "I have Dysautonomia or POTS and Ehlers Danlos Syndrome and also Chiari and Mast Cell Activation Disorder" they are going to have absolutely no idea what I'm talking about and also, it sounds like I have a whole lot of different things, when in fact, it's all connected... Do you see where my Doc is coming from now?

So I thought I'd try and put it in simple terms, not because the people I know wouldn't understand more complex explanations, but because the best way to describe a lot of what is going on is to use more basic terms and imagery.

So this is what I came up with... my body is just a bit broken, my veins are stretchy like balloons so when I stand up my blood doesn't naturally go back up to my heart and brain like in a body with regular, semi rigid veins, instead it pools and my veins just balloon to hold the blood in the lower pa
rt of my body. My heart has to compensate for the massive drop in blood pressure when I stand up, and it has to pump at a ridiculous rate to get it back up to where it's needed (meanwhile I have all kinds of symptoms like dizziness and vision problems and feeling like I'm going to pass out). To make matters worse, and frustrate the heck out of both me and my doctors is that my heart beats so fast sometimes that it lifts my blood pressure from very low to very high in a ridiculously short time - it overshoots, and then it can drop just as rapidly again. Ehlers Danlos is basically a connective tissue disease, which is why the veins are stretchy, why I drop things, why I bruise and sprain and dislocate easily (especially my ribs) and it's also why I have Chiari (my brain falling out) because my connective tissue doesn't hold my brain where it should be. All of these things combined make me feel pretty awful most of the time.  The autonomic nervous system doesn't work properly at all... that is why it's DYSautonomia. So all kinds of things that happen normally for other people, kind of switch on and off when they feel like it for me...  So picture your lungs, your lungs breathe for you without you needing to think about it (they do for me too, don't stress). Your nose brings in the air, the hairs in your nose filter it, and send it down to your lungs, your lungs inflate and further filter and absorb the oxygen and then send it back up and out of your mouth - it's a natural and automatic system. Our bodies are full of them, these autonomic systems - they control everything from breathing, heart rate, body temperature, bodily fluids, digestion etc., the list goes on.  So things such as Irritable Bowel Syndrome and Gastroparesis are disrupted operation (dysautonomia) of the digestion and output parts of our autonomic nervous system.  For example, I can eat most things (I very rarely feel hungry however as that 'switch' is obviously dodgy) and then all of a sudden something I can usually eat, makes me chronically nauseous or gives me heartburn.  I find once I get heartburn, I will have it for 2 or 3 weeks straight even if I consumed only water.  Then it switches off again.  I can have nausea for weeks on end, every day.  Same goes for the see-saw of constipation and diarrhea.  There is no rhyme or reason, no trigger, it's just dysautonomia of the digestive system.  That happens with all of the systems in the body - they all act up at times.  I find it easier to visualise a panel of switches that all connect to the various systems that are run by the autonomic nervous system.  Most people have a very proficient switchboard operator, I have a clown running mine, and he likes to cause trouble.

I have been plagued with 'allergies' all my life.  But unlike normal people (I use this term because it's easier than writing 'people with efficient autonomic nervous systems') my allergies are rarely consistent.  I can be terribly 'allergic' to apples for years, then all of a sudden I'm not.  I can be 'allergic' to things for a short time and then not.  It's stumped allergy specialists for years because many of my supposed 'allergies' have been extreme on their 'scratch' tests but the next time I have the same test I don't register an allergy, or it's barely a reaction.  It could be dangerous too, because what if I was REALLY allergic to something.  This happens because my Mast Cells think I'm being attacked so they send out lots of histamine.  The worst, and most consistent issue I have, is fluorescent lighting.  After being exposed to them for longer than 4 or 5 minutes my body starts to react.  I may get itchy, I might sweat, I may get dizzy.  Many, many times it escalated much further to actually feeling like I'm dying as my heart rate goes mental (>200bpm) and my blood pressure drops, my pupils dilate, I find it very hard to verbalise what's wrong, I get disoriented and find it hard to breathe and often faint.  This is in response to my mast cells releasing mega doses of histamine to head the attack of the assumed villain (fluorescents).  No idea why my body sees them as a threat, but it hates them. You have no idea how many times people have looked at me with absolute disdain, assuming I'm a junkie.  I'm also exhausted and wiped out for hours or days afterwards.  I'm often 'rashy' as I'll get urticaria break outs for no apparent reason.

My Chiari and subsequent cerebro spinal fluid (CFS) blockage causes lots and LOTS of headaches, numbness, brain fog, sleeplessness, vision disturbance, hearing loss, etc.,  I will be having surgery for it at some stage in the not too distant future.  I'm putting it off as long as possible.

So that's basically it, I'm not proficient in medical terminology, I find it much easier to explain in these terms.  But trust me, its sucky.  I'm sure some of you that know me may have questions, you can always ask, I won't bite... but a few that I've been asked I'll answer here:

1. I thought you had Chronic Fatigue Syndrome?

Yes, I do, I am chronically fatigued, however in my instance, it's not a title of my illness, it's the result of my combined illnesses and it was one of the earlier terms my doctors gave me because they had no idea of what they were dealing with.

2. I thought you had Fibromyalgia?

I was diagnosed with fibromyalgia about 10 years ago and I'm not sure if it was a misdiagnosis or part of what I'm dealing with.  I certainly hurt >8 on all of the fibro points they use to diagnose it.

3. Is there a cure?

No, I wish, more than anything in the whole wide world, I wish I could just be 'normal' even for a day!

So, to wrap up I just want to say I'm not always sick, and I don't want to be seen as 'the sick' one.  Yes, I have a lot of pain and a lot of headaches and I'm often tired, but please don't stop inviting me places, even if I have to cancel at last minute.  It's incredibly isolating to live with something like this.  I don't want visitors as I spend far too much time between these four walls - I want to go out.  Please understand that it is very painful for me to drive.  Sometimes I drive because it's the only way, or to take the stress off my family driving me around.  But if you offer to drive, or pick me up, I'll be so grateful.  Holding my arms out in front, holding the wheel is very, very painful.  Washing my hair is agony, but it also hurts when I get it washed.  I have a super-sensitive scalp.  It feels like I've had my hair in a super-tight pony-tail most of the time.  But it's more about my arms.  For some reason, those of us with EDS/POTS have issues with the valsalva manoeuvre as it does something dicky to our heart rate and/or breathing and when we put our arms up, or lean back, etc., it hurts like blue-blazing hell. So yeah, driving sucks.  I'm sure I've left lots out, so I may edit this post as I remember things.  I'd also like to add some links when I get more time, but this is a little snapshot of my life under the dysumbrella (I invented that term because it kinda fits).