"But you don't look sick!"

Sigh. It is such a burden to appear in positively rude good health when you feel like death warmed up on the inside ;)

Truly, if I have heard it once I have a thousand times - people are astonished to hear my "laundry list" of health woes, claiming I just don't look sick. Perhaps they would be more convinced if I had bits dropping off or poxy sores all over my face? I don't know, but what does "sick" look like anyway?

I am "blessed" with multiple, chronic health issues -

• multiple sclerosis
• fibromyalgia
• cysts on my thyroid
• depression
• back and neck problems

Because I am open about my health - including mental health - I find myself explaining things in conversations with family and friends, along the lines of:

"I didn't know you were depressed - you always seem so happy" - that must be the drugs and therapies working then. That and the fact that when I am having a really bad day I am most likely at home under the doona, not out and about.

"You wouldn't know you had MS from looking at you" - yay! I have the invisible version, where the impact on the central nervous system is less motor skills and more cognitive skills, less mobility and more sensory. I don't use a walking stick, frame or wheelchair: most people with MS don't. But more money is raised for research with images of chair-bound people than those who walk and talk!

"You don't seem to be in pain when I am with you" - Drugs are good! I live on pain-killing medication to manage my chronic pain in my lower back, neck and shoulders and the flare ups of fibromyalgia pain in my joints and connective tissues. I religiously visit my chiropractor. I avoid activity which will aggravate my conditions - and I just put up with it mostly. If you greeted me with "Are you in pain today?"  (yes) instead of "How are you today?"(okay) I would answer differently!

"But you do so much!" - but there is so much I don't do: I pay a third of my salary to a house cleaner; I am in bed 12 hours every night; I rarely go out in the evenings; I only prepare two meals each week; I rely on online shopping; I miss activities I want to do because of pain and fatigue ... but sharing news about the things I do is much more interesting than whining about what I don't!

So, next time you meet with someone who admits to chronic illness, don't tell them they don't look sick (because that sounds like you think they are faking it or deluded) instead, ask them how they are doing with that. Instead of declaring they look well, ask if they feel well? Instead of complaining about what they don't do, ask if there is anything you can do for them.

If you want to know more about the secret lives of people who don't look sick, check out this excellent website http://www.butyoudontlooksick.com/

If you ever here me referring to energy as "spoons" and worry I have lost the plot altogether, relax - this explains what I mean The Spoon Theory.

And me? I'm off to the doctor!

Me & My Shadow

I mentioned in my de-cluttering post on the weekend that I am having a bit of an MS flare-up and, as usually happens, received lots of care and concern on my Facebook and in the comments.

I am never going to knock back care and concern!

However, fear and panic I just don't need to arouse in those around me, so I thought I would share a little more about how I manage my health and the strategies I use to balance all these twirling plates!

I have a very mild form of relapsing-remitting multiple sclerosis - that's the kind you want to have if you have to have it. It has been a part of my life since 1995 and is similar to diabetes and arthritis - I need to accommodate it in my life but prevent it becoming my life.

There are factors in day to day life that can increase the risk of a flare-up or exacerbation - but it should be noted you can neither cause nor prevent these happening, only reduce the risk. For me, a flare-up will include fatigue and probably some mild sensory or cognitive  imbalance. I might lose feeling in part of my foot or hand or experience phantom sensations on my skin (a scalding burn on my arm, a hair brushing th tip of my nose), or I might forget information or struggle to input new data in my brain (its like working with a dodgy lap-top!)

For me - and most people with MS - the things that increase the likelihood of a flare up are - stress, heat, lack of sleep, lack of exercise and illness. So my management plan is to minimise all of these. Some are completely within my control, like eating well and others are beyond my control, like catching the common cold or living in a heatwave.

I thought the traffic light analogy sums things up quite well: 

My ideal place is in the green zone - plenty of quality sleep and rest, good nutrition, regular exercise, no viruses and good stress management.

The amber/yellow zone sees me managing to achieve most of these but with some areas of concern.

The red zone sees me extra busy over an extended period, with no chance to attend yoga or aqua class, prepare or eat good food, with poor sleep and lack of rest periods, with hot/humid weather and high stress loads in my work or personal life. Which all decrease my resistance to infection and my ability to fight it.

While my goal is always the green zone, reality means I am usually floating around in the yellow one. This means you might notice more bed days, more moaning about tiredness and complaints about not getting to class or eating well - all of these can be cause and affect!

You might actually notice I am the red zone, even before I do! That is because I am so in it I cannot see it and am just working on getting through each day. It is not helpful at that stage to point out I am in the red zone, but it is helpful if you act to reduce those triggers in some way (make sure I eat, don't let me stay up past my bed time, share the workload etc.)

Most of the above is not exclusive to MS and is equally applicable to other chronic illnesses. In fact, even the healthiest of people benefit from avoiding the red zone and getting the heck out of there if they stumble in!!!