amber rahim

Chronic illness: the parts we don't talk about


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What’s different about chronic illness? No.6: When going out could end up with you in adult diapers

You’ve been busy lately and you’re winding down and settling into some rest and recovery time.

Then something terrible happens: you get an invitation. To a party. With other people, probably also people you don’t know and who don’t know you.

If you are asking “why is this a problem?”, then you have never run out of spoons before.

When you are chronically ill, management of your spoons is important. And so is living a full, happy life. And we want it to be full, don’t we?

So this invitation has come along when you are just out of spoons. You yearn to go, let off steam, have some fun. Your good friend has turned into a devilish temptress telling you

it won’t be the same without you. please come. We’ll all have a fantastic time if you are there

Now, even if they don’t say those exact words, it may feel like this. Because you want to go.

To go or not to go. That is the question.

Do you say no? Disappoint them? disappoint yourself? But take care of yourself because you’re out of spoons and what you really need to do is chill out and rest.

Or do you say yes? And go, enjoy yourself, but in the process get so used up and knackered that you are going to spend a week in bed. Silently wishing for an adult nappy

so that you don’t have to get out of bed to pee…

(No! not in that adult baby fetish way. I was going to add a picture for a laugh but I googled it and it was just too disturbing.)

And if you say yes, you’re going to have to borrow against future spoons, using energy you don’t have yet so that you can stand upright, smile, laugh. But borrowing future spoons is like borrowing money from the mafia.

The interest on your future-spoons loan is going to cripple you.

That simple invitation has turned into a poisoned apple.

Finding Shades of Grey

Now I’ve been living with a cocktail of energy draining, sometimes debilitating illnesses for some years now (IBS, Endo, depression, perfectionism and its burn out consequence) and I’d be a hermit if I hadn’t learned to adjust. And with my eldest daughter having a seriously intensive chronic illness, I couldn’t afford to keep on using up my spoons. I had to make a change.

I have always been a full on, “if you’re going to do something, do it well” kind of person. And although I thought I was lazy, my standards are sky high (that’s why I consider perfectionism an illness).

I was a very black and white thinker. But luckily for me, my eldest taught me how to think in grey.

So now when I get that invitation, there is another dimension to my choice of go/don’t go. I have multiple options:

I can go and be lively, chatty and dare I say funny.

Or I can go and find a comfy chair and chat quietly to one or two people.

I can go for an hour. ok, it always ends up longer but I blame that on my #shopkeepersyndrome (you’re the shop keeper so you can’t leave first, you need to be there for others and need to be the last to leave – when it’s closing time and you have the keys). But I can now leave a party early.

I can stay at home and arrange to see them another time.

I can just say no, no explanations, but I’m sorry that I can’t come.

I can even stay at home and actually rest, go to bed, sleep.

So many shades of grey. So many options.

None of them requiring me to resort to adult nappies because I’m too exhausted to get out of bed.


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Rock and a hard place: Back to a PEG?

for the last 3 and a half years we’ve been going to the hospital to get Fs Mickey button changed.

Now, technically, we can do it at home. Unfortunately the first time we tried it F had an infection in the wound and it really hurt. She freaked out and since then Nurse H does it. She’s the specialist stoma nurse and F has known her almost all her life.

it was going well until today. For various reasons nurse H isn’t allowed to do it anymore. Today I was getting trained and doing it with her and it all went tits up.

F has got really strong stomach muscles. (Although according to her she hasn’t because you can’t see the “stripes on her tummy”. What can I say? She obviously has a great role model in me, not).

She was tense. Tense muscles contract. I tried to pull it out and it got stuck. Nurse H took over and she had to practically yank it out and shove the new one in. That’s not how she did it, she’s a professional but it was almost impossible for her to do it.

So after 3.5 years building up to F allowing me to do it, we are back to square one.

Nurse H’s suggestions? Back to the child psychologist to help F get over this fear (of something that is actually uncomfortable and sometimes painful).

Or go back to a PEG. This can stay in for years (but you never know how long) but requires surgery to put in and change. And there will be a tube dangling from her body again.

Rock and a hard place.

(I was going to call it Hobsons Choice but I googled. What we have is a dilemma (2 unappealing choices). A Hobsons Choice (this or nothing) might be easier. Then I wouldn’t need to decide.

so, what to do?

Unpleasant experience every 2-3 months, potentially scarring her psychologically (some more).

Or surgery every 3years or so. And having to be careful every minute of the day so that the dangling tube doesn’t get caught on something.

Rock and a hard place.

The coach in me is saying “that’s not a helpful perspective” and she’s right. But I need to find some energy so that I can let go of this very stuck and comforting perspective (as long as it’s a rock and a hard place it’s really easy to put off making a choice).

I think it’s time for some Dr Seuss

WITH YOUR HEAD FULL OF BRAINS AND YOUR SHOES FULL OF FEET

YOU’RE TOO SMART TO GO DOWN ANY NOT SO GOOD STREET