Tuesday 11 October 2016

When Life Gives You Lemons... Make Lemonade, or - I can still be successful even though I'm sick!

When you live with chronic illness, especially when first diagnosed, it's hard to imagine how you can cope financially.  Sometimes it's like life has pulled the rug from under you and you can be enveloped by a sense that you are not only unwell, but you are a burden, physically and financially, to your nearest and dearest.  These feelings only exacerbate if your illness means that you can no longer work in a regular capacity.

I felt like this for years, I survived on a government subsidy, trying to pay a mortgage as a single parent (which is an area where I believe sole parents are discriminated against, but that's for another post) and had to leave a job I loved.  Feelings of hopelessness swamped me many, many times. I struggled every single day, borrowing from Peter to pay Paul and relying on my very generous parents to keep us off the streets, quite literally.

It wasn't that I didn't have the ideas to make money, but you generally need to have some funds to get you started, and that's a trap for so many.

Before I go any further, I want to reassure you that I am not trying to sell anything to you or coerce anyone in any way, I just want to share MY story which can hopefully inspire others to do something similar.  I decided to take a plunge, I decided that I would join a direct sales company, in my case Scentsy.

The reason I chose Scentsy is because I LOVE anything that smells amazing, I'm quite literally a perfume addict - something I couldn't afford for the longest time - and so choosing something that I loved meant that it would be much easier for me to sell.  But, I looked further than that, I looked at the team building side of it because I'm very aware that building a team can mean income for life, so I thought, why not?  I grew a team quite rapidly and within 12 months I'd well and truly replaced any income I'd ever earned.  I'm living proof that it can be done, even with a whole gamut of illnesses.

When I've told my story to others they often say things like "Oh but I couldn't do that as I have (insert chronic illness here)" and I hope that I can inspire them in some small way when they know what I am dealing with.  It's a total mouthful and a bit of a head#%$ to get your mind around it all, but I have Dysautonomia which encompasses many things... think of Dys as disfunction, and autonomia as things that happen automatically, now put them together.  I tell people to imagine a switchboard (for ease of understanding, imagine it in the nerve centre of my brain).  Now imagine a whole heap of switches that govern certain 'autonomic' systems within the body such as heat regulation, heart/blood pressure regulation, digestion, allergic responses, etc., etc., etc., and now imagine that those switches are faulty; sometimes they turn off, sometimes they switch on and stick on, sometimes they flip between the two at rapid pace. In a healthy body they work naturally and switch on and off when they should, yeah, but not mine.  So that's the first part - Dysautonomia.

Dysautonomia is is also kind of like an umbrella which I described in another post, and part of what that umbrella consists of means that I also have POTS (postural orthostatic tachycardia syndrome) and Ehlers Danlos Syndrome which is a connective tissue disorder that causes me to bruise and dislocate joints really easy, and that my veins are stretchy and makes my heart rate and blood pressure go all over the place... if I squat for example, when I stand up my stretchy veins just enlarge and keep all the blood in my lower extremities and make my poor old ticker work double-time to pump the blood back up - sometimes it's not fast enough and I pass out, this also happens when I'm under fluorescent lighting as my mast cells think I'm being attacked by the big, scary lights and release an overload of histamine which my body doesn't cope with.  My mast cells also cause me to wake up looking like the Elephant Man sometimes when I have angioedema with no known trigger. These illnesses have so many complications and I can't possibly list them all here or risk boring you to death.

I also have Chiari, which quite blatantly means that my brain is coming out of my skull and sits against my spinal column (it's because the connective tissue disorder means that my brain is not being held in place like it should be) and that will require brain surgery at some point in the not too distant future.   I have a genetic mutation called MTHFR which means I can't metabolise LOADS of things, many drugs for pain relief etc., and therefore have a toxic overload in my body and just to top it off, I also have a genetic eye disease called Bietti's Crystalline Dystrophy in which most people are blind by the time they are in their 50s or 60s and I already have a number of the symptoms showing. Just to round it all out, these illnesses combined cause constant and debilitating pain in all parts of my body, extreme tiredness and, at times, depression. Oh and I also have Aspergers - I sure did hit the genetic jackpot! LOL! So, when someone says they can't do it, that's just what they are telling themselves, because if I can, ANYONE can.

Think of what you love, what inspires you, what you can do from home, or with little support from family members or close friends.  What could you do online?  There are so many things you can do, are you creative?

I recently started taking a two hour art class each week (when I'm well enough to attend) and I love it, friends were giving me great feedback on my work and so I decided to create bags with my art on them through a third party and sell them direct.  Many of my pieces are fully digital and I have literally created them on my laptop from a lounge chair. In my first week I've sold over 10.  Now sure this alone would never add up to a regular income, but it can grow, and it can certainly keep the wolf from the door.  I just wish I did this 4 or 5 years ago when I truly needed the money more than I do now.

There are many opportunities for employment online; you could do something like proof reading, creating resumes,  become a person friday for other people's social media presence, the list goes on, BUT I highly recommend looking into direct sales.  You have, in most cases, in-built support systems, an online presence, a personal website, and often groups of other consultants that you can connect with online (all of those things have been vital in my direct sales career, so before you join up, make sure they offer those) and also check what your personal requirements regarding sales may be, and one that you don't have to do in-home parties if you don't want to.

The way I run my Scentsy business (which works for me around my illness) is to keep it really simple and send out baskets of product (a basket party), run online parties, and have all team meetings and trainings on Facebook, etc., and the monthly (in our case three monthly) minimums are easily achievable, so it's something that anyone with a chronic illness can manage.

I was inspired to write this after a couple of comments made to me recently about how I had inspired people and that others in a similar situation could benefit from hearing about it, so if you are like me, or similar, or even if you're not - you CAN make delicious lemonade out of those lemons life gave you - you just have to try.

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).