Saturday, 25 November 2017
I’ve recently noticed a lot that I and others similar to me (in the sense that they have a chronic illness) can be quite judged for having lots of ‘gadgets’ around their home, from hot water machines to robot hoovers. People can be really critical of us for spending money on something they believe to be non essential or just a toy or novelty. But for us there is so much more to what we buy and why than it just being cool or fun.
I’m sure many of you know I have multiple chronic conditions, including Ehlers Danlos Syndrome, POTS and CCI. Managing these day to day is a challenge, I won’t lie! There are somethings I (and others) simply can’t manage because of illness, whether thats chopping vegetables, lifting a kettle, or holding a hoover. We simply can’t do some of those simple things because it leaves us with great pain and fatigue, or dislocations, to we may have some numbness, weakness or paralysis. So the only way to get those things done is to get someone else to do it, right? Well not all of us live with others, many of us live alone, and many of us don’t have, aren’t eligible for, or simply can’t get help with these things from carers or support workers. So we may buy ‘gadgets’ to help us, things that allow us to take part in activities others can do in a way that is suitable for us, whether thats cooking, or maintaining a tidy home, or many other things. Our gadgets make our lives more idependent and less frustrating, dangerous to our health, and depressing.
One example would be having a Breville Hot Cup as opposed to a kettle. For those that don’t know a Brevile hot cup is filled with cold water (I fill mine with a small mug at a time so its not too heavy for me), you then press the boil button and put a cup under the tap bit and when the water has boiled it releases a standard UK mug size amount of boiling water straight into your mug. For most people that would be considered a gadget, a luxury, an expense that is unecessary because kettles are cheaper right? Not for everyone. I mean yes a kettle is cheaper on your finances as a one off purchase, but if you can’t operate a kettle safely then the cost to your health it could have is greater than the cost of a ‘gadget’. I dropped boiling water on my foot last year, my condition meant that I dropped it and I has second degree burns, which were almost third degree, from just wanting a coffee, and I spent the night in hospital as a result. For me, lifting a heavy kettle full of boiling water is a hazard, especially now I have very little feeling in my legs, so if it happened now I wouldn’t necessarily noticed my foot was being burned. Whereas with the hot cup I can have hot drinks again, because the risk of carrying boiling water in large heavy amounts isn’t there, its just a small mug, which is so much less of a risk! Still unnecessary and a luxury? Not so much! So please, don’t judge us for having many appliances and ‘gadgets’, or for ordering ready made meals, and similar things, because to us they are enabling us to do what you take for granted! Living with a disability is incredibly expensive, and also difficult and frustrating, try not to add to our frustrations and pains with your judgement!
I’m going to do some posts in the weeks and months to come about things that have helped me manage, and things Ive tried that perhaps didn’t help! Mainly products and ‘gadgets’ but also foods or other things too!
Hope your all as well as possible!