My only advice

I’ve read a couple of posts lately, giving “advice” on things not to say to the chronically ill. Personally, anyone who wants, can say whatever enters their mind to me, but they had best be prepared for an answer, weighted with just as much stupidity, wit or candor as their comment, advise or question. In general, I believe in freedom of speech, but I also believe, in engaging your brain, before you speak to anyone. Having said that, though, I do agree with the thought that has been put into all these posts, that there are the longer you are ill, things that the brainless of this world, continually say to us or tell us. If I had a penny for every quackery diet or cure, and a further one, for every new and unproven cure, I would be rich, not cured, but rich. But what annoyed me most about these posts was the very concept that anyone should talk to me differently, just because I am ill. In general, I don’t want to even be treated differently, well no differently that any true human, would treat anyone else in my position. It is always more than appreciated, when anyone, does anything for me, that I can’t do myself, but I don’t see that as being treated differently, just being treated with the courtesy we should always show for each other as humans.

I am ill, that doesn’t make me any less of a human. It doesn’t change me into a different species, just a variation on the theme. A human on wheels, who stutters and has tremors, who forgets their words and is frequently confused. A human who finds the world a difficult place to navigate and the objects within it, difficult to use, as other more adept humans can. If we do need anything that is not usually given freely by most, then it’s time. We don’t in general manage to do anything as quickly, or with the finesse that we once had, but we can do most things, including talking if you just give us time. I have a deep belief that all of us, as long as we are not paralysed for our necks down, can do almost anything that we choose, if, we are just given time. People are just in too much of a hurry to jump in and “assist”. Oh, I know much of it is well meant, and it is, without a doubt, the hardest lesson that Adam has had to learn when it comes to caring for me, to let me struggle, a little longer than he is comfortable with.

Doing things for ourselves, even those things, that other can do quicker and without being in danger of any sort, is important. The more we do for ourselves, the more our personal wellbeing improves. I still insist in preparing the odd lunch for myself that requires either the use of the oven or the microwave. I have one meal that I prepare using each, but Adam wants to do them for me, mainly because every time I do so, there is a 1 in 3 chance of my burning myself. I don’t like getting burnt, but I do like the feeling of achievement. Those small dishes of food, taste extra special because I made them all on my own. Granted, a kid could cook either, but it didn’t, I did. It doesn’t matter if it is a dish of noodles or taking a shower, doing it on your own, makes it something special, just as once cooking a banquet, or swimming a mile did. Our achievement may have diminished but our self-pride hasn’t.

To the able-bodied that is something that is hard to grasp. Surely if a disabled person is struggling to drink from a glass, and at times dribbles from it or drops it, well buying them a sipper cup is the answer. To the disabled person, that is hurtful. It’s hurtful in ways that many will never understand. The most obvious is quite simply the fact, that a sipper cup is used by children, the purchase of it, is like saying we are no better than one. That cup would symbolise the opinion of the buyer, not the feelings of the recipient. It is a slap in the face, that as the blow lands, it simultaneously whips the rug out from under us. If I were to give advice to anyone about caring for someone who is chronically ill, or disabled, it is quite simply this. Never buy, or change anything because “you” think it will help, until the person themselves asks for it, or you have truly discussed it with them and they have agreed. We probably still won’t like it, but at least we are saying ourselves, “things need to change.” All those little things, even drinking, is something that we all hold on to, it’s called independence, and it along with dignity are the most precious things that we have left in our lives.

All humans need to feel in charge of their lives, that feeling grows with every tiny thing that we lose, so being treated and spoken to as we always have been, is vital. That’s why I said at the beginning of this post, there is nothing that can’t be said, asked or questioned about, as long as you would say, ask or question every adult on this planet, in the same way, manner or tone. Just because my mind doesn’t work as it once did, doesn’t mean that I am any less intelligent. If for some reason, we don’t understand you, we will say so, so please, don’t speak down to any of us. The most important thing anyone ever needs to know about things to say or do when in the company of someone with chronic illness, is quite simply this, treat us and speak to us always as your equal and nothing less.

 

Please read my blog from 2 years ago today – 14/04/ 2014 – Answers at last

Last night we made a breakthrough in finding where my Mother is. Adam had been trying to get information from the NHS but had failed to find her as according to the Aberdeen records department she had been discharged several months ago, as to where she had gone they couldn’t say. We were left no better off, but from what my brother had told me in December, she wasn’t going to be able to go home again, so how we were going to find her in one of the thousands of OAP homes out there, we had no idea. Adam said he was willing to download from the Web the phone numbers of all in the area and just sit and call them, but as I pointed out that could take months on its own. We were left with only one option, to contact Brain and get the information out of him somehow. Following my desperate wait for news of Mum all the way through December and never getting an answer at any time when I phoned, day or night, nor any……

12 thoughts on “My only advice

  1. You’re most welcome. (((Hugs))) Just trying to make sure that your post gets the recognition it deserves. I have the feeling (if you’re okay with it of course) that I’ll be posting praise and links to what you have to say, fairly frequently to try and help enlighten people. Please let me know if ever any corrections need to be made or if anything is ever best taken down. I want to make sure I don’t misrepresent you in anyway. I think what you have to say is quite valuable to the chronically ill and disabled community, our caregivers and as well as to others. Thank you for being so kind and open with us all.

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    • Thank you. I quite honestly at this second don’t know what to say, mind you, that could be just because I have only been out of bed for a handful of minutes. Jokes aside, that is a truly generous of you and thank you 😀

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      • Lol, I know that feeling. Also, I have never been one to really know what to say though when complimented anyway (brain fog, pain, fatigue and all that glorious stuff obviously doesn’t help), especially in person. I’ll respond in a way that is either laughable or awkaward or both. At least on a computer there is time to formulate an appropriate response. You’re most welcome and thank you. Your work calls for it. 🙂

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  2. I am absolutely with you on this one. I’ve lost count of the number of times people have totally patronised me, bending down and speaking loudly in my face as if I am deaf as well as everything else, patting me on the shoulder, making totally crass comments and particularly one person who suggested perhaps I should learn Spanish because ‘it would be a challenge’. Does she not realise that for us every day living is all the challenge we need. Here in France where I live my carers are so aware of the language they use and the way they say things. For example I wear incontinence pads. The French word ‘couche’ is nappy. They refuse to use that word but say ‘protection’ which is the same as in English with the same meaning. If I say ‘couche’ they correct me. I find that it helps me to feel a bit more dignified and shows the value of thinking before speaking. Have good day.

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    • It is unfortunately, something that most don’t learn until they too, join us. I personally don’t get why we seem to cease being human, just because we are ill.

      It sounds though that your carers are switched on, we need to be in the same world as everyone else, and doing something as simple as finding a word that brings us closer together, is so important.

      Take care (((Hugs)))

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  3. Today, I’m offering a suggestion for your hand protection while using your wheel chair, and I hope you’ll take it as a suggestion in the spirit it’s meant – to help you.

    There was something on the TV show, Shark Tank, which was called a “Natural Grip” for athletes to protect their hands while working out. I know the pads you applied to your wheels got you a better grip, and I’m wondering if this hand protection accessory could help you, too, since you didn’t want to consider hand and finger covering gloves.

    Good luck.

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    • Thanks for the suggestion, but it would still provide the same problem that gloves have, I would have to put it on and take it off continually. The pads I have applied, mean I don’t have to think about it at all. I can just get in and out of my chair as any one would, without thought. It does though mean that I have another option should the pads fail. Thanks again 🙂

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