Trying to be OS with a Chronic Health Condition

Prettyinpink_2

Meant to say, must be so frustrating for anyone with ME when people fake it! I know someone who claims to have it, yet she goes to a running club once a week. I just don't see how that is possible?!

prepareathome

Do you know I never thought of Melamine crockery just been having a look and there are some really nice sets available. Might get some after Christmas.

Thanks

lostinrates

Prettyinpink wrote: »

Meant to say, must be so frustrating for anyone with ME when people fake it! I know someone who claims to have it, yet she goes to a running club once a week. I just don't see how that is possible?!

I don't know beause I don't have ME (though for a while they were wondering if I did so I imagine I have some empathy). One day in early summer I was running and walking and on y feet all day, to days later flat on my back unable to move. I think one of the difficulties with things like this is sometimes you can do stuff sometimes you can't....I think its hard for friends and family to understand that too.

certainly from what Iunderstand, it better to try and do a general scale of gentle, progressive daily exercise than bow any energy on one run a week. Other with th condition might feel differently?

Prettyinpink_2

lostinrates wrote: »

I don't know beause I don't have ME (though for a while they were wondering if I did so I imagine I have some empathy). One day in early summer I was running and walking and on y feet all day, to days later flat on my back unable to move. I think one of the difficulties with things like this is sometimes you can do stuff sometimes you can't....I think its hard for friends and family to understand that too.

certainly from what Iunderstand, it better to try and do a general scale of gentle, progressive daily exercise than bow any energy on one run a week. Other with th condition might feel differently?

Perhaps I'm being harsh on her in that case, and she does have it. She has a tendency to stretch the truth most of the time, that's why I am doubtful about it. And she seemed to go from having a few days in bed suffering to the next week starting up in a running club. I just thought it seemed a bit strange and wouldn't she build up slowly with exercise in case she got another episode?

prepareathome

That is the big problem with ME, Fibro, MS one day energy/pain wise you are not to bad and you can do all sorts of things and people see you and say ' its great your cured' but then you get the payback and for that one day of being able to do things you can be in bed for a week, and of course people don't see you then.

A few months ago friend was coming over and it was a bad day for me, now usually I always phone and cancel, but hadn't seen her for ages so thought I will let her come so never said anything except when she called before she left to check if it was still ok for her to come I said yes fine. She arrived looked at me and said you are in pain. I had thought I had hidden it well and asked her how she knew, she told me it was my eyes, she said up till then she of course had never seen me on a bad day as I hide from the world then, so although she believed me totally ( she herself as agoraphobia) she had never realised how bad the pain was, but that day she said even though I was smiling my eyes were showing her just how much pain I was in. She insisted I sit the whole of her visit and she made the tea etc., she would not let me do anything. She admitted it was an eye opener ( no pun intended) as to how much pain I get, she knew I told her, but only seeing me that day really brought it home to her. She worked with dogs a lot and she said my eyes were the same as a dogs in pain, they hide it so they walk and move normally but she says its there in their eyes.

She made me think and any film or programme I watch ( I don't watch TV - got out of the habit the 2 years I had constant and I mean constant migraines - if anyone is supposed to be in pain I now look at the eyes and its true their face might show pain but if you look at their eyes you can see they are ok no matter how good an actor they are.

Cat501

prepareathome wrote: »

When I had my tribunal for DLA an advisor was supposed to be with me but had to cancel on the day so I took hubby in with me. They would not let him speak at all. They said they only talk to the person who is appealing no one else.

That's right - though if you take a WRA or another "official" person in with you, they can speak at the beginning - bringing up points/descriptors they'd like the panel to specifically look at. Mine also read out some points from my medical report which were lies (eg atos doc said I had NO history of self harm despite seeing the scars) and challenged them. What a shame your advisor had to cancel (!!! Glad you got it next time without jumping through hoops though

Prettyinpink_2

I guess comparing it to say IBS, I had a few days of suffering due to a mild curry. I avoided that sort of food for a while, and still don't like to have chilli very much as it does upset my stomach. So it's like me suffering after a curry one week, then going and having a vindaloo the next week. Maybe that's why I can't understand it.

I guess I am coming across as not a very nice person, but I am, honest!

I have every sympathy for people with ME, I just don't think it is a condition the person I know has.

Anyway, I have gone way off OS topic there, sorry!

lostinrates

Prettyinpink wrote: »

I guess comparing it to say IBS, I had a few days of suffering due to a mild curry. I avoided that sort of food for a while, and still don't like to have chilli very much as it does upset my stomach. So it's like me suffering after a curry one week, then going and having a vindaloo the next week. Maybe that's why I can't understand it.

I guess I am coming across as not a very nice person, but I am, honest!

I have every sympathy for people with ME, I just don't think it is a condition the person I know has.

PiP don't feel bad. I knew my comments might not be popular, but unles those of us with genuine chronic illness accept this we'll never unertand why people are ''intolerant'' towards us. There are lots of people pretending, lots more people not treatin themselves in the best ay so they can have as full a life as possible too. There are too people who are genuinely striken by an invisable illness.

I have to say, I'd wonder about someone who could make an ongpong scheduled physical commitment too.

Chickenopolis

Prettyinpink wrote: »

Meant to say, must be so frustrating for anyone with ME when people fake it! I know someone who claims to have it, yet she goes to a running club once a week. I just don't see how that is possible?!

People are funny -I spend my life trying my hardest to appear "non disabled" ... Its the massive scar on the back of my neck and the way that I hang to the left like a dodgy racehorse with foot drop that gives it away . To "fake it" would be a luxury most of us on this thread,it would appear, don't have. I would give her my symptoms any day if she wants them I feel that the person you refer to must get some psychological or secondary gain from the "sick role" , people to say "poor thing" maybe ? Who knows ... Plus I have never met anyone who has had my sexy little cervical ependymoma and brainstem syringomyelia ..(brainstem cyst and spinal cord tumour) so I can't compare it to anything or anyone which has is positive and negative aspects.

But on the other hand speaking of OS , I was frugal pre op anyway and thankfully they didn't take that bit out

rising_from_the_ashes

Thank you all for your kind words about the loss of my boy ..... I have thought about volunteering for a dog rescue but unfortunately it's 25 miles away and being quite rural I don't feel able to commit to this over the winter - then there's also the fact that I'd hate to commit to it and then have to cancel at short notice if it was a "bad day" and I wasn't able to go..... will see how it goes.

PAH I may think about it in the spring .... too soon atm and it's still "his" house and "him" that I want IYKWIM - a pup would be wonderful but I sadly feel that I just wouldn't have the energy to be able to give it all it needs so will have a look for older dogs. Sadly many rescues won't consider me as I work but when the time comes, I'll try my best.

Chickenopolis wrote: »

risingfromtheashes- I am sorry to hear about the loss of your dog xxx Is that his picture on your avatar ? What a little stunner ((hugs))

Yes, that's him - a few years ago now before the grey really set in....:)

Seakay wrote: »

It is also true that the bullying and aggression experienced in appeals is increasing nationwide. If you ever get that far take a legally qualified person in with you; don't worry about the impression that this will make, you'll be glad to have someone with you who can explain why authority doesn't give you the right to scream abuse (as happened to a sister for a friend of mine who was told that falling over on a hill doesn't count and who did she think she was raising the matter? Plus as there was no one with her she must have coped and picked herself up so how was it relevent? This after she'd attempted to answer the question, "have you fallen recently?")

It's so sad isn't it - I realise they have to try to weed out those who are "at it" but there surely should be a reasonable way of doing this. It's bad enough having to discuss the intimate parts of your condition round a table of strangers (there were 3 suits at mine and the WR person) without someone accusing you of lying (she actually said this to my face) and deliberately trying to humiliate you.

I may try again in the NY if I can pluck up enough courage ....

Seakay wrote: »

I now have to leave my door keys in the lock of the front door (on the inside) so that I unlock the door to get out so the keys are in my hand so I can't lock myself out (although it's tempting fate to even mention this as I'm sure that I'll find a way!) and I still find ways to lose the keys while I am out!

I was so glad when I moved to this house and discovered that a) the back door doesn't lock from the outside and is a bolt type thing and b) the front door only has a mortice - it's such a relief to not be able to lock myself out (although it doesn't help keep track of the keys when I've actually left.



Thanks for sharing your "silly things" when very tired stories - cheered me up no end to know I'm not the only one!

I did especially like the firelighters in the freezer!:eek:

Tip time
Not sure if this will help anyone but I've started keeping 2 shopping lists:

List 1 - everyday items for the weekly shop. Stuff is noted as needed & I also put on quickly used items as soon as I open the last packet/box.

List 2 - items that last a long time / don't need replaced straight away eg cornflour, lentils (I buy these in huge bags so last ages), washing stuff, olive oil etc.

They are both kept on the fridge door and when I go shopping I take both - items from the 2nd list are only bought if on offer etc and the list goes back on the fridge door when I get home. If I get to the point of "needing" to get them, they are transferred onto the "weekly list".

For both lists, it saves having to rummage through all the cupboards / fridge etc before going shopping and means if you're having a good day and want to pop to the shops, you're not wasting energy doing the list.

Hope that makes some sort of sense - let me know if not and I'll try again!:)