Monday 13 October 2014

#IChallengeMS - what is having MS like

If you don't know someone diagnosed with MS odds are you probably don't really know much about the disease.

You can find about MS here, the possible causes of MS (we still don't know), and current treatments. The uncertainty of cause and the fact that the treatments don't work for everyone and only cover certain types of MS are why we need more research and why I got involved in #IChallengeMS.

What is it like having MS? Well it is different for everyone. The symptoms are determined by which nerves are affected or damaged by demyelination).

Here is how you step into the shoes of someone with MS and experience some of the common symptoms. 

Optic Neuritis - this is one of the common first symptoms that a lot of people experience, it is one of the most difficult to replicate. Often it causes pain when moving the affected eye, a washing out of colour (for me always red), a lack of depth perception, blind spots and other irritations. My worst and most enduring symptom is always a general dimming of vision - imagine you have just come into the house after being outside on a bright summer's day; that moment before your eyes adjust. Try walking around in a pair of (not too dark) sunglasses - to experience the frustration, try reading a book or using a computer (don't cheat and turn the lights on!).

Pins and needles and numbness - sensory abnormalities are another common complaint. We've all got pins and needles from sitting on our feet too long, or lying on our hand in bed; remember that, but it doesn't go away -  and you have to do things with the affected limb at the same time. Numbness takes it one step further... I have no real feeling in my feet (most of the time I have to check if I have socks on or not) and very litte feeling in my hands (which makes fine motor skills such as typing tricky). Try it out... put two pairs of the thickest socks you can find on and walk around a bit; not knowing exactly what your feet are up to makes it hard! For hands try putting on some fairly thick gloves; now try typing, doing up buttons or even holding a knife and fork. Tricky?!

Fatigue - one of the more universal symptoms (and not just people with MS, an equal opportunities auto-immune symptom this one); it is a delicate balance which can be upset not just by what you are doing but by external factors that cannot be controlled; for example the weather. Weather? Yes weather, a common problem people MS have is that heat exacerbates their symptoms - the day is too hot, everything is that bit harder. Fatigue isn't just feeling a bit tired, it isn't cured by having a nap (although most people won't say no to one!). Fatigue is bone crushing, wet-rag wringing, can't lift your arm or take another step. Try putting some of those fitness weights that you strap around your wrists and ankles on. Go about for a few hours and feel how difficult it is to lift your legs or arms. That is just the beginning. This is best explained by the excellent 'Spoon Theory' and why you'll often hear people with auto-immune disease talking about spoons or referring to themselves as 'spoonies'.

Bladder and bowels - a not so talked about problem lots of people with MS have is a troubled relationship with their bladder and/or bowels. The only way you can replicate it is to drink (not too much so you make yourself ill) a lot of water, and go into your garden (or as far away from your toilet as you can) and wait. When you need to go be happy you are at home and near a bathroom!!!

Walking and balance - difficult to really experience this one. You could try spinning round really fast (like when you are a child) and then walking in a straight line... that dizziness that passes across your awareness, vertigo is a fact of life for some people with MS. For the walking experience, try putting on one high-heel and one flat and see how off balance you feel. This is not really getting close. You could try some of the neurologists favourite tests and see how you fare; walk heel-to-toe in along a line on the floor (don't hold your arms out for balance); stand with your feet together and close your eyes (still don't put your arms out for balance) - tricky isn't it, even when you don't have neurological problems.

These are just the problems that have I've had - MS is a very individual disease and I'm sure there are things I've missed. This is why I took part in #IChallengeMS which was raising money for research. There is so much we don't know, so much we can't treat and still no cure.