Some Ideas for Living with Chronic Illness…

About which all I can say is, they work for me…

A few days ago I was accused – in a nice way – of being too bloody-minded to die. It is, I suppose, quite true. At least that was also my late aunt’s view, and she’d known me all my life, so who am I to argue?

Of course, when your time’s up, it’s up – bugger all you can do about that – but I believe that the attitude with which you take on life can do quite a bit to make sure that day doesn’t arrive any earlier than it should, and hopefully quite a bit later – and that process begins in your head.

The opposite is also true.

So, having lived with serious illness, and disability, for all but my first 2 years, I thought that this might be an appropriate time to share a few thoughts on the subject.

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1. Do not, ever, take illness personally. Illness isn’t sentient, it doesn’t know or care about you, or have a grudge against you, it just is.

2. Make your meds your religion – seriously. You absolutely must take them to a strict timetable – just taking them whenever you remember means you’ll never derive maximum benefit from them.

The best way to do this, if you have a smartphone, is to set alarms for each event, and name them appropriately. Even if you have a dumb phone, it should allow you to set enough alarms, with luck.

If you’re reading this then you have a computer, and Outlook has a calendar which can be used to set as many alarms as you could possibly want or, if you don’t have Outlook, scrounge or track down free organiser software.

If all else fails, buy an alarm clock – set it for the next lot each time you take a dose.  Or an electronic kitchen timer, if it can be set for a long enough period (mine, for example, goes up to 19 hours 59 minutes).

3.  Get the best out of life that you can. Don’t automatically think “I can’t   do that!” but, rather, “What can I change so that I can do that?” Of course, there will always be things that are beyond you no matter what, but changing your perspective might put others, or a modified version of them, within your reach. And never be afraid to learn new skills to replace those you might have lost or, even, just for the hell of it.

3b. NEVER say, Oh, I’m too old. At least, don’t do it in my hearing!

4. Be as fit as you can be. Had I not been so fit, I think I would have been more severely affected by my ME (hell, it wiped me out anyway), and also by the arrival of COPD 10 years later, by which time, of course, I was starting, no matter how hard I tried, to lose my fitness. I did, because  my walking ability was severely curtailed, stay fit by working out daily with a pair of 10kg dumbbells – now I can’t even lift one!

I had been, for a couple of decades, a very active backpacker and rambler, and a cyclist since my teens. The main difference between me and someone normally fit was that I mostly walked alone, at my own pace, and chose low-level routes, with the minimum of bloody big hills and the maximum of bloody good pubs (the art of good walking is knowing when to stop).  This is what I meant by a change of perspective, making something notionally impossible, with my much reduced lung capacity, work on my terms. (DWP note – this was years before I became unable to work.)

5. Do make it a point of honour to know at least as much about your condition as – and preferably more than – your GP. You can’t get the best from the relationship from a position of ignorance. Nor will you have the knowledge you need to get the best out of your meds. (Tip: when researching online stick to reputable medical websites, or hospital and university websites, for reliable information. Whatever you get from Wikipedia, do be sure to verify it elsewhere.)

6. Don’t whinge constantly! Seriously. Not only do people lose interest, more importantly it drags you down psychologically too – the very act of moaning causes you to focus too much on your illness, or pain, or whatever. OK, we all have a moan occasionally – sometimes you just have to, and we wouldn’t be normal if we didn’t – but it shouldn’t become a lifestyle. It should not define you.

7. Do not – ever – give up the fight. Life might well feel as if it’s totally shit much of the time, with pain verging on the unendurable, but the moment you say to yourself “That’s it, I’ve had enough, I really can’t be doing with this any longer,” that’s the time you start to die. But where there is a powerful, even indomitable, will to live, then there may be life for longer than there otherwise would be.  It’s often said that where there’s life, there’s hope. I suspect the reverse is rather more accurate.

Personally, I am dying – it’s simply a matter of when, not if  (truth to tell, this has been one Christmas that, 11 months ago, I never expected to see, as I’ve already said elsewhere). Death will take me when it must, but I’m sure as hell not going to just quit, to just roll over, and wait to die even though, some days, that can be a very attractive option. That’s not my way, and never has been – I’m just too bloody-minded for that.

Apparently…

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6 thoughts on “Some Ideas for Living with Chronic Illness…

  1. Very good post! I’m in the process of doing CBT over the internet, with a weekly follow-up phone call from a therapist. The word ‘Therapist’ reminds me of that old Benny Hill sketch, where he changes the sign to: The rapist! BUT, alot of the points made on this course are spot on with what you have said here. The presentation is a bit childish, however, I have noticed patterns in my thinking both positive and negative. It is easier when you make yourself aware of these patterns to deal with the negative more effectively. I also found out that I had been dealing with thoughts and actions in the same constructive way all my life anyway. Just that now I seem to be ever so slightly more aware of it in myself, and in others. GPs often trumpet CBT as being just as effective as medication. BOLLOCKS! Happy, happy, joy, joy thoughts only go so far with a genuine chemical imbalance. But, cynicism, awareness and medication seem to do just fine. So far.

    • CBT – for some people, by no means all – can be a useful adjunct to medication, but that’s all. Even far more highly qualified psychiatrists would never say “Just talk to me, it’s better than drugs!” But, rather, “Talk to me and take your drugs as instructed.”

      As I found with my ex, who had severe MH problems, talking things out can help, sometimes a great deal, but it’s not a cure, because often there is no cure. Nobody with any sense – or ethics – would claim otherwise.

  2. Yes you are too bloody minded in the nicest way possible. I admire your strength of character and your willingness to pass on your knowledge to others. I do think hope keeps us going and it is in out own hands to keep that hope alive in our day to day living. You have to be adaptable and I think that is what I have found the hardest, the changes come thick and fast at times and my emotions can’t always cope but I read your blogs all the time and it’s good to see your perspective on things, I don’t always agree with you but that is good too.

  3. Thank you for your advice! Simple truth is that we are dying, some painfully, some gracefully, some sooner, some later but to be born is to die. Sex used to be the taboo subject but has been replaced by death in the course of my lifetime.

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