What 'Hoarding: Buried Alive' Got Wrong About Chronic Fatigue Syndrome

[Ysabelle-S]

Apparently one of those hoarding-type TV programmes featured a woman living with a lot of clutter, and she was presented as lazy when she actually had ME. According to this post, her health situation was not even mentioned till later, once the viewers had been given a very biased view, nor was her health discussed in detail. I haven't watched the programme, but I think there's a video in this post:

https://themighty.com/2017/05/hoarding-buried-alive-chronic-fatigue-syndrome-teresa/

Just to add, in his talk at an ME meeting in Auckland this year, Dr Charles Lapp asked the audience if they could guess what the number one stress was for ME patients. Turned out it was clutter. Clutter really gets ME sufferers down because patients either struggle or fail to stay on top of it. So I don't think unhelpful representations of clutter are needed from the media.

 

[Orla]

Yeah I saw that piece on The Mighty and thought it was good. I have been on a decluttering crusade in my own place the last year and a half and it definitely help make the place look better, so less stressful, and re-organising has made it easier to find things (though I still misplace things due to brain-fog).

I wasn't a hoarder though before I started doing it, but I have a small place that I need to keep on top of. I have realised the worst thing really coming into the house now is the junk mail and it piles up really quickly, but is mixed up with real mail so I still need to go through it. I must be more careful about ticking (or not ticking) boxes about future advertising.

I could identify though with the woman going to the second-hand shop. I go frequently and like to have a chat to the people working there. There are a few good ones near me and it is an easy fun day out to go to them. Even though I buy the odd stupid thing, overall they have saved me a lot of money. But I can see if someone was lonely, and this was one of their few outlets and hobbies, how it could get out of hand quickly.

 

[Ysabelle-S]

Yeah I saw that piece on The Mighty and thought it was good. I have been on a decluttering crusade in my own place the last year and a half and it definitely help make the place look better, so less stressful, and re-organising has made it easier to find things (though I still misplace things due to brain-fog).

I wasn't a hoarder though before I started doing it, but I have a small place that I need to keep on top of. I have realised the worst thing really coming into the house now is the junk mail and it piles up really quickly, but is mixed up with real mail so I still need to go through it. I must be more careful about ticking (or not ticking) boxes about future advertising.

I could identify though with the woman going to the second-hand shop. I go frequently and like to have a chat to the people working there. There are a few good ones near me and it is an easy fund day out to go to them. Even though I buy the odd stupid thing, overall they have saved me a lot of money. But I can see if someone was lonely, and this was one of their few outlets and hobbies, how it could get out of hand quickly.

I do periodic spring cleans, usually taking about two to three days with the bigger cleans. I always put on films or a DVD series - think the last one I watched for a clean up was Orphan Black series one and two. Hitchock's Rebecca and Notorious were two of my old cleaning films, and I've always been partial to having the horror film, The Relic on during a clean too, lol. I take constant rests, and watch the screen part of the time. Basically I do it in a way that avoids crashing. It would be great to do it all in one go, but I have a ton of books, and they are tiring to pick up and move about for cleaning. I try to minimise that as much as possible. I'm the same as you in not having enough space for everything. But I don't buy much to add to it, so that's something at least!

 

[Orla]

Freecycle https://www.freecycle.org/ has been great for getting rid of stuff (I have gotten good stuff from there also, but I only put in for stuff very nearby and if I think I am feeling up to going out to get it). I have gotten rid of over 150 books that way (from my pre-ME life). My achilles heel at the moment is ME stuff, and some other written material I want to read/check before getting rid of. I can't read much so this takes ages. And anything like paper work needs to be done with a fairly clear head.

 

[Mij]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3018686/

3.6.2. Medical Conditions
In response to queries about chronic and severe medical conditions, 63.6% of hoarding participants meeting diagnostic criteria endorsed at least one such condition, compared to 49.8% of hoarding participants not meeting diagnostic criteria [FET < .001, OR = 1.76 (1.31–2.38)]. The rate of specific disorders among hoarding participants is shown in Table 3. Compared to women in the NCS, hoarding participants meeting full diagnostic criteria were significantly more likely to report all of the assessed medical conditions, with increased risk ranging from a twofold risk of ulcer to an 11-fold risk of stroke1. The most commonly-reported medical conditions among hoarding participants were arthritis, hypertension, chronic stomach/gallbladder trouble, lupus/thyroid disorder/autoimmune disease, chronic fatigue syndrome, fibromyalgia, and diabetes/high blood sugar. Hoarding participants who did not meet full criteria showed fewer significant differences with the NCS sample, although increased rates of hypertension, diabetes, and cancer were noted.

 

[Valentijn]

I must be more careful about ticking (or not ticking) boxes about future advertising.

In the Netherlands we can buy stickers that tell the spam distributors to bugger off. We have one for the mail slot, and another for next to the doorbell for people trying to sell something (or collect for charities) in person.

 

[caledonia]

I have realised the worst thing really coming into the house now is the junk mail and it piles up really quickly, but is mixed up with real mail so I still need to go through it. I must be more careful about ticking (or not ticking) boxes about future advertising.

You can get rid of the current junk mail coming in too. Save up your junk mail for a month to see where it's all coming from. Then google "how to stop junk mail" for tips on how to stop it.

There are some direct marketing companies you can opt out with, but in some cases you may need to mail a note to the company sending the unwanted mail.

I did this for my both my elderly dad and myself a number of years ago and it reduced the volume of mail significantly.

 

[caledonia]

I do periodic spring cleans, usually taking about two to three days with the bigger cleans. I always put on films or a DVD series - think the last one I watched for a clean up was Orphan Black series one and two. Hitchock's Rebecca and Notorious were two of my old cleaning films, and I've always been partial to having the horror film, The Relic on during a clean too, lol. I take constant rests, and watch the screen part of the time. Basically I do it in a way that avoids crashing. It would be great to do it all in one go, but I have a ton of books, and they are tiring to pick up and move about for cleaning. I try to minimise that as much as possible. I'm the same as you in not having enough space for everything. But I don't buy much to add to it, so that's something at least!

An episode of Hoarders does it for me - suddenly I feel inspired to declutter

ps. I liked Hoarders a lot better than Hoarding: Buried Alive. It's not as sensationalized.

 

[Solstice]

Clutter is annoying on many different levels imo. It makes it a lot harder to find something, which with I struggle already. But it's a lot of visual stimuli too, which people with M.E. could probably do without too.

 

[Little Bluestem]

I have wondered in the past whether some of the people described as hoarders might really have ME/CFS. Particularly those where the co-workers and/or neighbors express surprise, noting that the person was always well-kept personally. Housekeeping goes before personal hygiene on the downward descent.

 

[Orla]

An episode of Hoarders does it for me - suddenly I feel inspired to declutter

Yeah, any time I see a programme about hoarding it makes me want to de-clutter.

I have made a start regarding the junk mail. I have just put up a handwritten sign on my door saying No Commercial Leaflets (I also put No Sales Callers. One of my neighbours has this. Why I didn't think to do it earlier I don't know, as sometimes they get me out of bed etc.).

The no commercial thing allows the option of community mail which I want. This is assuming people read it and use their heads. I might need to print something out properly, that looks more officious, but it might help for now.

I have also applied to get my name taken off mass-marketing data lists, but unfortunately there is no way to get taken off lists that are not specifically addressed to me (e.g. if it has To the Householder and my address on it there is no way of stopping it. This is really annoying, as this is the stuff I really want to stop. If a company has my name it means I probably had some contact with them in the past, so I might not find direct mail from them quite so objectionable, though sometimes a service is no longer relevant to me. Now I know why so much of it comes in addressed to the Householder).

I might have to spend some time doing what @caledonia did and write individually to companies to get my name taken off lists. I think they are obliged to follow through on this if you contact them. Could be very time consuming, but it will be worth it in the long-run.

I have written to one company already to get taken off their postal lists (but I am happy to get their emails). I will do this with other companies as the mail comes in. I'd have a small amount coming in from companies I bought stuff from in the past, but I often just dump the mass-marketing stuff without looking at it so it is a total waste.