Help & Advice needed please.

Crohn's Disease Forum

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Hi Guys,

Since my operation my health has improved tenfold, and physically i am quite healthy, eating well, exercising, etc. But not having a job, and wanting to be near to a toilet, just in case I have to go, means I spend most of my day in the house. Right now I'm struggling with my mental and psychological well being...not because of my crohns as such, but because of not having a job, being in the house all day, etc.

I'm quite happy, but I do believe I am going a bit stir crazy. I've been to the doctors and have booked an appointment to see a councillor.

It sounds daft, because I realize it's hardly tangible, but to me it is worrying and very real, I've never felt like this before and I'm quite scared by it.

Have any other members had experience with this? And does anyone have any advice?

Thanks,

Liam
 
Hey have you thought about getting a part time job near your house? Or if thats still to much to bear what about trying to find something that you can do online from the house for some cash flow. Also, I would try and find a hobby to do around the house to keep your mind off of things.
 
Been there, done that. I went from 90 hour weeks to zip. With the physical changes came a lot of emotional and mental changes as well. I did seek out counselling, learned to relax, breathe properly and to look for the positives. My sense of self took a beating at first, who am I and where to go from here? I am not my job, I am not Crohns. Learning that I am ill and that I have to cater somewhat to that relaxed my need to be doing all the time. I do respite work for foster parents (get to stay at home), paint projects, crafts etc. I go to a support group for crohns & colitis in town and have been teaching myself to start a webpage for C&C for local support. That's been a process over the last two years, I still have my moments but it is getting better.
Find someone or someplace to give you what you need. Its the intangibles that can make you go batsh$t crazy. You are not alone and I get it. Are you familiar with the Serenity Prayer? Some days that's my mantra.
 
Hiya Liam
It's the not knowing that's worrying you, and if you went for counselling Cognitive Behaviour Therapy (CBT) would help a lot.
CBT works on by changing the way you think (cognitive) will then change the way you act (behave)
good luck xxx
 
Hiya Liam
It's the not knowing that's worrying you, and if you went for counselling Cognitive Behaviour Therapy (CBT) would help a lot.
CBT works on by changing the way you think (cognitive) will then change the way you act (behave)
good luck xxx



Thanks Joan,

Yes the doctor who I went to see yesterday did mention this as well, she said that basically once I've seen the councillor, she will then decide whether I need it or not.

Is something you've had experience with, Joan....first hand or otherwise?

Liam
 
Been there, done that. I went from 90 hour weeks to zip. With the physical changes came a lot of emotional and mental changes as well. I did seek out counselling, learned to relax, breathe properly and to look for the positives. My sense of self took a beating at first, who am I and where to go from here? I am not my job, I am not Crohns. Learning that I am ill and that I have to cater somewhat to that relaxed my need to be doing all the time. I do respite work for foster parents (get to stay at home), paint projects, crafts etc. I go to a support group for crohns & colitis in town and have been teaching myself to start a webpage for C&C for local support. That's been a process over the last two years, I still have my moments but it is getting better.
Find someone or someplace to give you what you need. Its the intangibles that can make you go batsh$t crazy. You are not alone and I get it. Are you familiar with the Serenity Prayer? Some days that's my mantra.

Hi Dunbar,

Thanks for the advice, I appreciate any I can get.

I do and did have a hobby/hobbies. I have a mountain bike and a road bike and since recovering after my op in 2010, I really took to going out cycling for a few hours most days and I walk my dog a few times everyday. But in the past week, I've just had no incentive or will power to do anything really. I'm just feeling very withdrawn at the moment, and while I've never been a confident person, I've always been able to do the basic stuff and get by, but now I feel like I've completely lost what little confidence and people skills I had. And it has really scared me, because I don't know what's happened.

I have no idea what triggered this or even what it is. I was going fine, then in the past week or so I began to feel like a pressure in my head and then two nights ago I broke down to my parents and let it all out, told them everything about how I was worried about so much, even though I shouldn't be and don't really have a reason to be. And it did provide a bit of relief when I let it out, but I'm still not feeling how I was just 2 weeks ago.

I personally think that I might be suffering from a type of claustrophobic reaction, like cabin fever, to being in the house and alone so much. I live with my parents and they have been amazing and so supportive to me, but as you know the IBD can make us feel very isolated. And I think it can all get too much sometimes, but we have to fight it, eh.

Liam
 
Hey have you thought about getting a part time job near your house? Or if thats still to much to bear what about trying to find something that you can do online from the house for some cash flow. Also, I would try and find a hobby to do around the house to keep your mind off of things.

Hi Crohns in blue,

Yes it is something I have considered, but there not hiring at the moment, as I live on the outskirts of Leicester, in which there is a sainsburys near by, which about a 10-15 minute walk from my house, but there not hiring at the moment.

Yesterday I rang round to try to get some voluntary work, but I was struggling to even get that, which doesn't help matters, lol.

I did and do have a hobby in the house, which is cards, I bought a few books on magic and began to learn how to do some tricks with cards, etc. And was really enjoying it, but at the minute I have no incentive to do anything, and I've got no appetite at all really.

I don't what's happened to me or what's brought this on.

Liam
 
Hey man i just read your post and feel for you on the lack of energy. Im sure a job a job will turn up soon. I briefly read over one of the responses to your post where someone
mentioned they ride a mountain bike for a hobby. Hve you thought about that? I ride a
Mountain bike at work and in my off time for a way to vent and it really works for me.
 
Well i feel like a bit of an idiot. I should have really read the post before reposting. I didnt realize you were the one writing about biking. Do you know of any good magic tricks that will make an idiot post disappear?
 
Hi Crohns in blue,

lol don't worry about the post....nope, no tricks. Still learning the basics of magic with cards at the minute. It's been interesting and a hobby for me while I'm in the house.

I don't MTB on trails or compete, I just go out and about, like to go out into the countryside, feels nice to be around nature and the animals. And in the past year or so I've been out on my road bike at least a few times a week, but at the minute I've just got no zest to do things I enjoyed doing just a few weeks ago, it's strange.

Lost my appetite as well, which isn't helping things.


Liam
 
Hi Liam
I think alot of us has felt like this at one point or another. i have rang in sick more times in the last 6 months then I have in the last 8 years all because of the fear of not having a bathroom near by if i was having a bad day.

It is a bit of a vicious circle. We want to get out there, want to do more things, meet people try new hobbies but all the time this fear can be there. I have worried about going to concerts weeks in advance all because i know that there would only be portable loos. I was bridesmaid at a wedding once and it completely stressed me out.

But isolating yourself definitely won't help either - i also was going through that phase, stopped meeting my friends etc. and like you had no reason for doing it, and didn't know why it happened.

I went to a counsellor and the one bit of advice she gave me was to get lost in the moment as much as possible - concentrate on everyday tasks that you do everyday like making dinner, your cards, etc. the more you get lost in daily activities the less time you have to ponder and over think things. it kind of make sense.

I think cycling is brilliant, are there any cycling groups near your area that you could join. I have one 3 miles down the road that meets twice a week which i have been involved with for years.

One other hobby i found excellent was horse riding, but gave it up because it was too expensive. But when i did it it was brilliant for clearing the mind because you were so bloody worried about staying on the horse lol.

have you tried vitamins or a tonic as well, being ran down can really affect your mood.
I know i have kind of rambled on a bit but be assured you are not alone.
 
Hi Liam
I think alot of us has felt like this at one point or another. i have rang in sick more times in the last 6 months then I have in the last 8 years all because of the fear of not having a bathroom near by if i was having a bad day.

It is a bit of a vicious circle. We want to get out there, want to do more things, meet people try new hobbies but all the time this fear can be there. I have worried about going to concerts weeks in advance all because i know that there would only be portable loos. I was bridesmaid at a wedding once and it completely stressed me out.

But isolating yourself definitely won't help either - i also was going through that phase, stopped meeting my friends etc. and like you had no reason for doing it, and didn't know why it happened.

I went to a counsellor and the one bit of advice she gave me was to get lost in the moment as much as possible - concentrate on everyday tasks that you do everyday like making dinner, your cards, etc. the more you get lost in daily activities the less time you have to ponder and over think things. it kind of make sense.

I think cycling is brilliant, are there any cycling groups near your area that you could join. I have one 3 miles down the road that meets twice a week which i have been involved with for years.

One other hobby i found excellent was horse riding, but gave it up because it was too expensive. But when i did it it was brilliant for clearing the mind because you were so bloody worried about staying on the horse lol.

have you tried vitamins or a tonic as well, being ran down can really affect your mood.
I know i have kind of rambled on a bit but be assured you are not alone.


Hi Karj,

No, you have definitely not rambled on. Your post, as do all the posts on here really help me and others to get through our journey. We all help each other though it. :ysmile:

And I have begun to look on it as a journey we all go through, experiencing and seeing different things, which is what makes us all so different from one another.

I do enjoy my hobbies, or should I say did, but in the last 7-8 days I have lost all interest and enthusiasm for the things I love doing. If I'm honest, I think I'm suffering from depression, so I'm going to have get that looked in to. I think I'm worried about getting a job, and holding on to it. i hear many great stories about how understanding employers are, but I just haven't had any experience of this, but I hope to.

I totally agree with you about the vicious circle. I recently went to surrey to watch the olympic road race, which was great, but I encountered the port a loo situation there, and I was constantly worried about the availability of the loos, and the ques, etc. And it just adds to all the worry, then I end up needing to go to the loo, etc.

I've not tried any extra vitamins, but it is something I will look into. I obviously don't get loads of fruit and veg, but I was eating a bannana every day to every other day and having plenty of carbs and protein. But at the minute I've got not appetite really, although it does seem to be better in the evening than in the morning.

Regards,

Liam
 
Hope you get sorted :) try a few different things anyway. Take one day at a time. This is all we can do really and spoil yourself a little. Try and do one thing everyday that makes you happy. That is what i was told to do, and if you enjoy getting out amongst nature do that, i also find that very therapeutic.

There is great websites too out there on depression and how to cope with it without going on meds - even though sometimes you just have to do that but i think try everything else too. Support groups can be great, we have an organisation in our area that holds meetings once a week every week of the year - even during Christmas. So maybe go a long to one of them?

If you are on new medication this could also maybe be contributing to you feeling down. I know when i am on a high dose of steroids i get very fed up.

Try and look up so called happy foods - maybe include them in your diet, or foods that give energy maybe? cos you sound like you are lacking alot in energy and if you are ran down that will definitely contribute to depression.

I think us crohnies all go through these spells but we can pick ourselves up and go. I remember when i was teaching secondary school kids I used to play Tom Petty's 'I won't back down' full volume before I would head in to work lol.

What kind of work are you trying to get? Yes employers can be very accommodating but i know what you mean too about not really experiencing it, it depends on the organisation definitely but my experience has been more positive then negative i have to say.
 
The biggest thing I found to get my butt moving was ...just doing it. Sounds simple doesn't it, as you are very aware it is anything but. The thing I don't want (can't, don't care etc.)to do is exactly what I need to do. Cause it's not the doing of, its the getting started part. Once you're doing whatever it is, you tend to get lost in it and for that period of time all is okay. And by getting out there and sharing whats going on in your life, you will be put in touch with random people who can help you in some way. Serendipity. You may get that 'I know somebody with ....' ignore it, just know that they now have you on their radar and will remember you, which might come in handy down the road. As for food, eat anyway. That's part of a depressed state. Unless of course its painful to do so, then do what you can. It's all going to come together for you.
 
Hi all,
Coming to this forum is such a huge step for all of us, really. We put ourselves out there and find support from folks who have a sense of what we go through. Sometimes I get down but then I remember at least the meds will work (someday!) and I can get back to my normal, clear headed, active, outgoing self. And reading other people's stories, I know that I could have it much worse (that is so cliche, but puts things in perspective for me).
Hang in there all and enjoy the summer sunshine!
 
Hi Liam,

Have you tried mental games? Like memory games, time reaction, planning, visual field, chess, checkers, etc. These type of games helps you to stay focus ,mentally sharp, distract you from your problems and even build confidence when you notice some improvements in your game skills and mind ones.
Online, you can find a plethora of this kind of games.

Example: lumosity


Sorry:yfaint:, I hope you can understand me. I speak english as a second language.

Best of luck.
Bye.
 
Hi Liam,

Have you tried mental games? Like memory games, time reaction, planning, visual field, chess, checkers, etc. These type of games helps you to stay focus ,mentally sharp, distract you from your problems and even build confidence when you notice some improvements in your game skills and mind ones.
Online, you can find a plethora of this kind of games.

Example: lumosity


Sorry:yfaint:, I hope you can understand me. I speak english as a second language.

Best of luck.
Bye.


Hi Tony,

No I've not really tried any mental games or puzzles. I do find such things interesting, but sometimes I don't really feel like making the effort, it's not something I think about, but it might be an idea to look into it....thank you.

Tony, you're English is excellent.

Liam
 
Hope you get sorted :) try a few different things anyway. Take one day at a time. This is all we can do really and spoil yourself a little. Try and do one thing everyday that makes you happy. That is what i was told to do, and if you enjoy getting out amongst nature do that, i also find that very therapeutic.

There is great websites too out there on depression and how to cope with it without going on meds - even though sometimes you just have to do that but i think try everything else too. Support groups can be great, we have an organisation in our area that holds meetings once a week every week of the year - even during Christmas. So maybe go a long to one of them?

If you are on new medication this could also maybe be contributing to you feeling down. I know when i am on a high dose of steroids i get very fed up.

Try and look up so called happy foods - maybe include them in your diet, or foods that give energy maybe? cos you sound like you are lacking alot in energy and if you are ran down that will definitely contribute to depression.

I think us crohnies all go through these spells but we can pick ourselves up and go. I remember when i was teaching secondary school kids I used to play Tom Petty's 'I won't back down' full volume before I would head in to work lol.

What kind of work are you trying to get? Yes employers can be very accommodating but i know what you mean too about not really experiencing it, it depends on the organisation definitely but my experience has been more positive then negative i have to say.


Hi Karj,

I'm just looking for a little part time job, preferably close by or somewhere accessible by public transport. Something office based would be good, because I'd be sitting down and there would be a toilet close by, which would make me feel a bit more at ease.

It'd just be nice to have a place to go in the day, a little bit of my own money and something to focus on. I musn't worry about it, but it would be healthy for me I think.

Liam
 
The biggest thing I found to get my butt moving was ...just doing it. Sounds simple doesn't it, as you are very aware it is anything but. The thing I don't want (can't, don't care etc.)to do is exactly what I need to do. Cause it's not the doing of, its the getting started part. Once you're doing whatever it is, you tend to get lost in it and for that period of time all is okay. And by getting out there and sharing whats going on in your life, you will be put in touch with random people who can help you in some way. Serendipity. You may get that 'I know somebody with ....' ignore it, just know that they now have you on their radar and will remember you, which might come in handy down the road. As for food, eat anyway. That's part of a depressed state. Unless of course its painful to do so, then do what you can. It's all going to come together for you.

Thanks Dunbar,

Yes I know, I appreciate your advice though. I went out on my bike today in the countryside for a few hours, it was nice, peaceful and relaxing, but I do think I need a bit of company.

I'm also on the IBD and me forum, one that's for the younger folks with crohns or UC and I did post a thread trying to see if it would be something the members would be interested in, meeting up and socializing with other sufferes of a similar age and situation, and it would possibly be something for the mods to consider....I set it up as an open thread and welcomed ideas and thoughts....but as yet no one has responded.


Liam
 
Hi Liam
Did you check to see if there was a IBD support group in the area, might be worth ringing up the health board or whatever to find out? We have some in Ireland.
 
Hey Karj,

Yes I've agreed to attend on on the 1st of september at the glenfield hospital. I'm excited to go, and a little nervous, but I'm not sure that there will be any one there who's of a similar age.

Liam
 
So glad you have decided to go to that, that would defiinitely be a great step. Don't worry about the ages cos I find in these meetings there tend to be different people aswell so just because there might not be somebody of a similar age this time, there might be the next time. Let us know how it goes :)
 
hi liam,i feel yor pain,i worked all my days since i left school at 16(nearly 18 years ago) and when i became ill i left my job,was prob the best thing i done as they were a shower of ar**holes,everyday i was ill they didnt give a monkeys so i thought,up them i need to be healthy,mentally and physically,i then had a wee daughter so i would watch her and take her to playgroup,toddlers then nursery but some mornings were tough,with the D starting to reak havoc and not being able to go on her trips and stuff,i took up mountain biking and love it,its a safe hobby as when your in the wilderness you dont worry as much about where the nearest loo is,the dont call it "call of nature for nothing"
most of my riding buddys no the score so when were out i just leap behind a wall or bush,hoping no-one is walking at that side haha.i did like golf but dont think the golfers would take kindly to looking for their golf ball the sliced into the trees and see me pearched up against a tree letting it all hang out,good luck with your quest and if you ever find yourself up in scotland bring yer bike and we'll go for a wee ride in the hills with nice clean air and clean public loo's haha
 
So glad you have decided to go to that, that would defiinitely be a great step. Don't worry about the ages cos I find in these meetings there tend to be different people aswell so just because there might not be somebody of a similar age this time, there might be the next time. Let us know how it goes :)

Thanks Karj,

I'll be sure to let you know how it goes. I am looking forawrd to speaking to other people face to face, it'll be the first time I will have met others with IBD in a group.
 
hi liam,i feel yor pain,i worked all my days since i left school at 16(nearly 18 years ago) and when i became ill i left my job,was prob the best thing i done as they were a shower of ar**holes,everyday i was ill they didnt give a monkeys so i thought,up them i need to be healthy,mentally and physically,i then had a wee daughter so i would watch her and take her to playgroup,toddlers then nursery but some mornings were tough,with the D starting to reak havoc and not being able to go on her trips and stuff,i took up mountain biking and love it,its a safe hobby as when your in the wilderness you dont worry as much about where the nearest loo is,the dont call it "call of nature for nothing"
most of my riding buddys no the score so when were out i just leap behind a wall or bush,hoping no-one is walking at that side haha.i did like golf but dont think the golfers would take kindly to looking for their golf ball the sliced into the trees and see me pearched up against a tree letting it all hang out,good luck with your quest and if you ever find yourself up in scotland bring yer bike and we'll go for a wee ride in the hills with nice clean air and clean public loo's haha

Hi Hainman,

Thanks for your encouraging post. Haha, it made me smile so much, becuase it's all so true and I can relate to much of it.

I always carry a packet of tissues when I'm out on my bike, either my road bike or my MTB. I been caught short a few times, but out in the countryside it doesn't bother me, it's when I'm in the city or a town that I panic....can't be doing that sort of thing in public, might get a few stares and gasps, eh lol.

I'd love to visit the Cairngorms, I think it's a beautiful part of the world. So you never know, you might find me up there.

I was working as a carpenters apprentice when I was first diagnosed, and then I quit my job as my health began to decline. And I have not worked since then, but since my op, my health is relatively good, it's just the toilet situation that holds me back a bit. I've applied to volunteer every saturday at an animal shelter to walk the dogs, and the woman got back to me today asking me to come in for an induction, so that sounds promising.

Liam
 
ah thats good news liam,glad your getting a wee break,im the same,could easily work if the shit would stop flowing haha as im perfectly fit although i have lost a bit of weight,
i love going out on the mtb as it gives me a wee bit of freedom from being stuck indoors and the thrill of the downhill fun is awesome......some tasty trails up here,the 7stanes are amazing.keep me posted on how your doing mate,who knows what could happen....
 
Liam,
Oh how I feel for ya! Over the summer I didn't work at all for thie first time ever! I've always had two jobs etc. Being type A, it's hard to stay at home. I actually got used to it and told myself to use this precious time to let my body HEAL from the 2 intestinal infections I had in June. Now I'm back at both jobs and to be honest, I wish i wasn't. I'm a teacher and i work in a restaurant (you can imagine the torture of being around food all day that you can't eat). Our restaurant is in the process of moving and I panicked because the new one does not have a private 1 stall bathroom! EEEK!
Crohns is sooo annoying. I have found that creating art (that's what my degree is in) is a good, cathartic outlet. Have you tried any sort of stay at home creative activity? You may be shocked at what your psyche has to say when you start making things via creativity.
Good luck and please do keep your chin up!
oh! you know what might be great? creting a mixed media journal!!! :D:D
 
ah thats good news liam,glad your getting a wee break,im the same,could easily work if the shit would stop flowing haha as im perfectly fit although i have lost a bit of weight,
i love going out on the mtb as it gives me a wee bit of freedom from being stuck indoors and the thrill of the downhill fun is awesome......some tasty trails up here,the 7stanes are amazing.keep me posted on how your doing mate,who knows what could happen....

Thanks Hainman,

Yes I was out on my road bike yesterday, and did a few nice descents, and a few tough climbs too. It does, gives you a great sense of freedom being out on your bike.

I appreciate the support and I'll be sure to keep in touch.

Look after yourself & take care.

Liam
 
Liam,
Oh how I feel for ya! Over the summer I didn't work at all for thie first time ever! I've always had two jobs etc. Being type A, it's hard to stay at home. I actually got used to it and told myself to use this precious time to let my body HEAL from the 2 intestinal infections I had in June. Now I'm back at both jobs and to be honest, I wish i wasn't. I'm a teacher and i work in a restaurant (you can imagine the torture of being around food all day that you can't eat). Our restaurant is in the process of moving and I panicked because the new one does not have a private 1 stall bathroom! EEEK!
Crohns is sooo annoying. I have found that creating art (that's what my degree is in) is a good, cathartic outlet. Have you tried any sort of stay at home creative activity? You may be shocked at what your psyche has to say when you start making things via creativity.
Good luck and please do keep your chin up!
oh! you know what might be great? creting a mixed media journal!!! :D:D


Hi 4peace,

Yes it's difficult isn't it? It can be tough for people to understand IBD as well, while that's not their fault, it would make life a little easier for people like us.

I'm now volunteering every saturday for a few hours at a local animal shelter, just walking the dogs. So while it's not paid, it gives me something to do, something that's away from the house. I start next saturday, so I'm looking forward to it. It seems relaxed, casual and not too pressured, which is exactly what I'm looking for in life. Plus I love dogs, well...all animals really, but especially dogs.

I understand your dilemma about your job, you want to work, but on the other hand with the work comes stress, and with stress comes flares, etc. That's sort of how I am myself, I would like a job, but I don't want one that entails too much pressure or worry. Oh and I know about the food situation, before my surgery, I couldn't eat much at all without being in pain, so i just used to sit at the table with a bottle of water and a garlic bread, and watch everyone else tuck in...lol.

I do like drawing, and often draw, but I spend a lot of time playing with playing cards. I bough a few books on magic, and decided I would like to learn some magic with cards and try my hand at it, so that does keep me occupied for a lot of the day. It is interesting for sure, and quite a creative process, as it requires you to do lots of thinking. It's good for my crohns because it keeps my mind occupied, so while I'm thinking and focusing on the cards, I'm not thinking about my crohns or any other worries.

Thanks for your advice, 4peace

Liam
 
Yea, Liam! I am happy to read that you are starting volunteer work. That is so generous of you to help at the animal shelter, they will no doubt appreciate any time you can spare. And I think animals offer a type of comforting therapy, especially when we are ill. Have fun :)
 
Hi Amanda,

Thanks, and yes I agree that animals do provide such comfort and therapy to people who are ill, and help people with a variety of illnesses.

So yes, it''ll be nice to give something back and help out the animals, as they give us all so much, and they often don't get the recognition they deserve or the mutual help they might also need.


Liam
 
hey liam,glad yer out and about,aye ye have to have a good sense of humour with this illness,
its always good to help and give any advice you can share as when you need it in return people are always helpfull to,i had a guy on facebook contact me out the blue who was pointed in my way from someone on here and he has been so thankfull for the help and advice i have shared with him,
brave man doing the road riding,it gives me the heebie geebies.to many big trucks for my liking(just a shit-bag haha)
 
hey liam,glad yer out and about,aye ye have to have a good sense of humour with this illness,
its always good to help and give any advice you can share as when you need it in return people are always helpfull to,i had a guy on facebook contact me out the blue who was pointed in my way from someone on here and he has been so thankfull for the help and advice i have shared with him,
brave man doing the road riding,it gives me the heebie geebies.to many big trucks for my liking(just a shit-bag haha)

Haha, yeah I know what you mean. I've not had any incidents on the road, touch wood. I tend to stick to the quieter country lanes, and avoid or seldom go on the faster dual carriageway type roads...too fast and too many cars couldn't care less about cyclists, eh.

It's great fun on the road though. I agree with you about the sense of humour, it's vital to keeping things together I think.

Liam
 
Hi Liam
Just wondering if you have had all of your bloods checked recently? I was recently in hospiital, posted on another thread but a lot of my stuff was very low. I have been feeling a lot like you are - just think it should be something you need to look in to too.
 
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