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Impact on life

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Tdm

Tdm

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I was just on wiki and saw this (not got ME just looking on wiki randomly)....look in 'illness severity' and it has a chart that shows how much various conditions are a 'pain in the butt'

en.m.wikipedia.org

Myalgic encephalomyelitis/chronic fatigue syndrome - Wikipedia

en.m.wikipedia.org en.m.wikipedia.org

Type 2 is more of an impact than type 1, and they are more impactful thst some cancers apparently. Food for thought.
 
ME/CFS which is what the article is about, is way more disabling than diabetes, which is what the chart shows and I’d agree with that. I’ve spent 3 years since getting it trying to rebuild my life, I have to rest every 2-2.5hrs, regardless of what my plans for the day are and where I am, simply to avoid coming down with full on flu like symptoms and exhaustion. If I plan something energetic, like say having a shower, I need to lie down before I can do something else energetic like get dressed.

I’d agree type 2 has more of an impact on life than type 1 in this sort of how much does it limit your life metric. Type 2 restricts your diet, comes with little education, whereas people with type 1 mostly tell newly diagnosed people it doesn’t really limit your life and you can do anything you want to.
 
I think it is hard to compare the impact on life of Type 1 and type 2 because the impact is not measurable and varies from person to person.
As someone with a science background, calculating insulin doses is relatively easy but for someone with discalcula for example, the impact would be huge.
And with diabetes, the impact depends upon whether you manage it. Someone who "ignores" either Type 1 or type 2 would suggest the impact is negligible until they experience complications. And maybe the table suggests the impact is greater for type 2 because it is easier to "ignore" so complications are more likely.
Type 1 does not stop me doing what I want with my life but that does not mean it has no impact.
 
I agree with @helli that how diabetes impacts on your life is a very personal journey. In my limited experience of diabetes and reading several posts on the forum I do have one observation. With type 2 diabetes watching what you eat and remembering your medication can be onerous, but you can choose to take a day off occasionally from bg monitoring and any diet restrictions. If you have Type 1 or Type 3 you don't appear to get a day off ever without becoming ill very quickly.
 
silver minion said:
I agree with @helli that how diabetes impacts on your life is a very personal journey. In my limited experience of diabetes and reading several posts on the forum I do have one observation. With type 2 diabetes watching what you eat and remembering your medication can be onerous, but you can choose to take a day off occasionally from bg monitoring and any diet restrictions. If you have Type 1 or Type 3 you don't appear to get a day off ever without becoming ill very quickly.
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OK, we never get a day off from our insulin…but that applies to other things as well. I never have a day off from cleaning my teeth, for example, or umpteen other little chores that keep life ticking over.
 
Robin said:
OK, we never get a day off from our insulin…but that applies to other things as well. I never have a day off from cleaning my teeth, for example, or umpteen other little chores that keep life ticking over.
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But you could - have a day off from cleaning your teeth, that is. You might worry that your breath smelled or your teeth felt tacky, but you wouldn’t have to worry about DKA and ending up in intensive care or worse.
 
Inka said:
But you could - have a day off from cleaning your teeth, that is. You might worry that your breath smelled or your teeth felt tacky, but you wouldn’t have to worry about DKA and ending up in intensive care or worse.
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The metric shown is about quality of life with the condition and explaining how quality of life with ME is so much worse than other conditions, not about how much work it is to manage the condition though. The quality of life with type 1 diabetes is way better than the quality of life with ME, even though type 1 diabetes is more work to manage than ME, because there is no treatment for ME.

With ME it’s not a case of “if you skip your medication you might get ill”. You’re ill every single day and there is no medication to stop that. If there was a medication for ME, even if that was even more intensive than the treatment for type 1 diabetes, the quality of life of people with ME would massively improve.
 
Lucyr said:
The metric shown is about quality of life with the condition and explaining how quality of life with ME is so much worse than other conditions, not about how much work it is to manage the condition though. The quality of life with type 1 diabetes is way better than the quality of life with ME, even though type 1 diabetes is more work to manage than ME, because there is no treatment for ME.

With ME it’s not a case of “if you skip your medication you might get ill”. You’re ill every single day and there is no medication to stop that. If there was a medication for ME, even if that was even more intensive than the treatment for type 1 diabetes, the quality of life of people with ME would massively improve.
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Hi @Lucyr I agree that the metric posted is primarily about ME although the point the OP made was the difference in ranking of Type 1 and Type 2 diabetes within the list.
This isn't taking anything away from the reduced quality of life ME sufferers have to live with. I cannot begin to imagine how you get through each day but I hope that there will be better treatments soon.
 
It wasn't so much about the differences between t1 and 2, but the fact we appear to be below a couple of cancers that struck me.
Wheres our mcmillan nurses, eh? ;-)
 
Tdm said:
It wasn't so much about the differences between t1 and 2, but the fact we appear to be below a couple of cancers that struck me.
Wheres our mcmillan nurses, eh? ;-)
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Apologies @Tdm I looked at the table and missed your comment about some cancers. It is certainly food for thought.
 
Lucyr said:
The metric shown is about quality of life with the condition and explaining how quality of life with ME is so much worse than other conditions, not about how much work it is to manage the condition though. The quality of life with type 1 diabetes is way better than the quality of life with ME, even though type 1 diabetes is more work to manage than ME, because there is no treatment for ME.

With ME it’s not a case of “if you skip your medication you might get ill”. You’re ill every single day and there is no medication to stop that. If there was a medication for ME, even if that was even more intensive than the treatment for type 1 diabetes, the quality of life of people with ME would massively improve.
Click to expand...

A relative has ME. I know how awful it is. I wasn’t commenting on that, just the comparison between tooth brushing and Type 1 because I find the two not comparable personally.
 
I actually remember thinking in July/August 1972 that I was pleased there was a treatment for T1 to enable a relatively 'ordinary' life when so many other chronic conditions one could get, didn't have that prospect. Wasn't all that long since polio jabs had become available, nor TB jabs apparently (to me, though some were exempt for some reason or the other unknown and unqueried by me at that age) routinely doled out at senior school to 'everybody'.

I understand what you're thinking about the cancers. The horrible truth about the BigC is that even after you've had it surgically removed and/or blasted with Xrays or chemotherapy and thought you were rid of it for several decades it can still rear its bloody ugly head again having metastasized. And by the time that's discovered it's usually spready so far round the body and brain its a death sentence. (Is the main reason I'm very 'interested' in any debate about decriminalising euthanasia.)

Thinking of ME - anyone heard how @Pumper_Sue might be, these days?
 
Hopefully ME resesrch may benefit from the coming of long COVID. Must admit i didn't know too much about ME and the wiki article eas an eye opener.
I also remember ghe relief i had when i got my tests back and it was 'only t1' as pancreatic cancer had been mentioned. And that was without looking into the high mortality of pancreatic cancer.
 
I've had a look at the table, but my observation is that some conditions are plain horrible and some more or less horrible than that, BUT the individual makes a huge difference.

For example, I have a friend I have often cited on here. A former T1 who has undergone two Yes, two) kidney transplants. The reason the first failed was the medics assumed her kidney failure was due to her T1, when it was not. It stemmed from another condition which was not diagnosed or even investigated until the first transplant failed and she headed back to dialysis.

She has other conditions, but has recently been diagnosed with Parkinson's in her early 60's. Her attitude to that? "Well, at least I'm not the age Michael J Fox or others were when diagnosed." Her mobility is now impacted, that compounded by the earlier loss of a couple of toes through her periods of dialysis.

She is a total inspiration of positivity. She's holding off going for a Blue Badge, "until she feels she REALLY needs it", swims a couple of times a week, does Tai Chi, sings in a choir and is my hero.

How anyone deals with any codition will impact their outcomes, at least to an extent. I feel people, when diagnosed with a long term condition either learn to live with it, and live their best lives with their hand of cards, or they become the condition and it rules their lives and likely, in my view, makes less good outcomes and quality of life more likely.

The world seem obsessed with labels and categories, and they aren't always helpful. Nobody should be kept in the dark about their condition. Quite the opposite, but buying into all the bad stuff and potential bad stuff isn't always helpful.

Be clear, this post is about nobody on this forum, but my observation of life in general, as I gather miles on life's clock.
 
I would not bet on it, research and long Covid clinics are been reduced.
 
Here's a wild one. Medical conditions I have (in order of diagnosis):

  • Migraine - very severe if not constantly medicated. This was life changing before the meds.
  • T2 diabetes - medicated and controlled
  • Inflammatory bowel diseases - moderate but not medicated

However the thing that changed my life and was severely life changing was the menopause and that isn't even considered a medical condition :confused:

It's all relative isn't it? For some women, the menopause is a breeze, for others it's the worse time of their lives. Some people with IBD can barely tolerate ANY food, whereas I manage very well with few flareups. I would say my T2 diagnosis changed my life but it wasn't life changing as I don't have any long-term unmanageable issues as a result of it.
 
trophywench said:
Thinking of ME - anyone heard how @Pumper_Sue might be, these days?
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Hi trophywench,
I'm fine thanks have MS not ME.
Hope all is well with you.
 
Fine thanks Sue - just ordered pump No 5 ! I was just slightly concerned we didn't seem to have heard from you very lately and hoped you were as OK as you can be - so thanks for letting us know that you are. I've got to that age where slightly older peers have started to expire - I realise you're not in that specific category of course - but is just causing me to ask about more folk generally rather than just assuming they are OK!
 
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