Trying to be OS with a Chronic Health Condition

mardatha

Write notes. Always write things down when you remember, cos you wont remember later !

zzzLazyDaisy

rising_from_the_ashes wrote: »

Wish they'd do more research into the other conditions that seem to be associated with Crohn's.

I agree, it is such a complicated illness.

Sorry if I am telling you something that you already know - but Crohn's is known to affect the spine. My son see a consultant who specialises in Crohn's related arthritis who has been a great help to him. Maybe you could do some research and get a referral?

Also crohn's is one of the auto-immune diseases, and it is unbelievable how many people with these types of conditions also have fibro and/or me type symptoms.

Cat501

mardatha wrote: »

Write notes. Always write things down when you remember, cos you wont remember later !

Good advice! And do it as SOON as you think of it because if you're anything like me, 30 seconds later you'll have forgotten!!:o

lostinrates

Hello, me too, I have long term, life changing health condition. I treid to reply to this earlier but couldn't.

I have a neuroloical condition and after I got that my endocrine ystem couldn't cope, my thyroid packed in. Most of the time I'm getting better (O'm not meant too, in fact, thet told dh and I to get myaffaires in order when I was diagnosed) but this year have had a few set backs. Like many with ME I sufer extreme exhaustion, and find it hard to keep going, I also have muscle weakness, and my muscles don't''switch off...so I get very sore hard muscles along side the nerve pain. I hve bilateral TGN (which is like knife either side of the head/face) and similad intermittant pain elsewhere..usually sciatica, and feet. On the other hand, often I can't feel my lower legs, and I am numb around my midriff (numb is better than sore, right!?). I have memory problems and lots might notice my typing is a bit funky...I had to relearn the idea of language...and still have plenty of hiccups but talking I'm almost perfect now..I just frget words sometimes or stop midsentence, lol.

My top tips are: be determined and don't think like a sick person. when I let myself feel like a sick person I act like a sick person, and that is the path to depression and further ecline IMO. Its almost impossible to avoid the self limiting situation (and I don't mean don't pace yourself, pacing is important.) I wasn't meant to walk again, talk again ...I do both now. Just TRY and stop me, I dare you Mind if not over than at least in balance to matter is THE bigest part of the battle.

get done what you can, and prioritise. I can't do everything in a day....I just can't. Wehave a lot of animals that need feeing and dh isn't here mon - fri. so I prioritise. Everything that NEEDS to be done gets done...so everyone is clean and fed. This is normally mainly over before 8/9 am, if it takes me all day, it takes me all day. I can usually walk out to the yard, but if I can't I use a stick, if the stick isn't enough I use a chair as a zimmer frame and take a rest on it on the way out there, and if thats to hard then I'll bloody well crawl. Thankfully, thats very, very rare these days...but better than is was when the horses wer two miles down the road, lol

Getting the stuff that has to be done rlieves pressure on yourself, so then you sometimes find you cn o the stuff you just want to do, the ther way round you exhaust yourself and might not get to the things you have to do.


Keep as active as you can (depending on condition of course ), and when you can't get back in the saddle, even if starting bc at the beginning, ASAP, the longer you avoid it the harder it is.

zzzLazyDaisy

I have a note book that I write everything in... trouble is, I can't remember what I did with the notebook at the moment!

One OS tip that was given to me was to get a cheap phone book or an address book - the sort with a-z down the side - that you can pick up in charity shops and pound shops - and write down where everything is kept or where you put it when you last used it.

So for example - that camera battery charger that you only use once in a blue moon and then have to buy a replacement because you can't remember where you put it (that would be me, then ) - when you put it away you go to 'C' for 'camera' and write down where you put it.

Of course for people who are organised and tidy this is probably not an issue...

The other OS tip I have is

'stay away from amazon and e-bay when you are bed-bound and feeling fed-up'........

lostinrates

note books are good....IMO white boards are better.....they are too big too avoid or forget about.

babie steps are essential. I make a list every day, o bad days even brushing my teeth makes the list as one of the ten/twenty things I MUST do. On days when ther people are hom the things on my ''want to do'' list are ways they know they can help me in a useful way.

MrsAtobe

zzzLazyDaisy wrote: »

I agree, it is such a complicated illness.

Sorry if I am telling you something that you already know - but Crohn's is known to affect the spine. My son see a consultant who specialises in Crohn's related arthritis who has been a great help to him. Maybe you could do some research and get a referral?

Also crohn's is one of the auto-immune diseases, and it is unbelievable how many people with these types of conditions also have fibro and/or me type symptoms.

Another one with Crohn's here as well - does that make us Crohnies? Sorry, couldn't resist . I have the ME type symptoms as well, I can wake up feeling like I could do with a good night's sleep when I've just had one. I've got tinnitus too, and suffered with endometriosis before I was put into a temporary menopause. The gynae was most impressed when I gave her a paper about endometriosis in Crohn's patients - it was one that she hadn't seen.

I recently had to have an op on one of my toes, and now have Chronic Regional Pain Syndrome in that foot. Apparently it's quite rare, but having an auto-immune disease is one of the trigger factors. I love having Crohn's:mad: I'm fed up of being an interesting case.

Don't you just love having to juggle the meds as well?

prepareathome

zzzLadyDaisy, happy to meet you as everyone else, the more the merrier as between us we can help each other do little bits of OS. Doesn't matter how small but if it feeds our need to be OS that is great.

I understand about your lodger, its hard to have to face we are not the healthy people we once were and need to rely on others. What I have found in my travels to the world of the chronically sick and disabled is all of them were once people who 'did' not lookers on, on life. I think this is what makes it so hard. In our minds we are still the people we used to be and so we plan and imagine doing this or that, but then our bodies let us down.

We can still be OS if even if its just in the smallest way - cutting up an old towel to use as wash cloths, its simple yet OS, and if you can at least do something like that you are achieving something. I did this the other day by the way, that is why its come to mind. I would like to sew them round the edge but even if I never do, I at least still have 'new' wash cloths.

My friends daughter came this afternoon and we had a nice chat, her and her daughters had some of my fruit loaf and we went into the garden and she picked some kale, leeks and two different types of mustard plants ( can't remember the names) to take home with her.

So am a lot calmer now and just going to be lazy this evening, have the pie I bought in farmers market yesterday heating up in the oven, will just throw some veg from freezer into steamer in a minute and open a tin of potatoes - would try peeling any today, its for days like today I keep the tins in.

Dogs and me are all sitting on the bed relaxed and snug, as its gone really cold out there. Hopefully will get to sleep handy, as feel tired now I doubt that will be a problem as fingers crossed I want to be at Lidl when it opens tomorrow to pick up the specials I want.

Hope everyone has had a good restful day.

prepareathome

zzzLazyDaisy wrote: »

I have a note book that I write everything in... trouble is, I can't remember what I did with the notebook at the moment!

One OS tip that was given to me was to get a cheap phone book or an address book - the sort with a-z down the side - that you can pick up in charity shops and pound shops - and write down where everything is kept or where you put it when you last used it.

So for example - that camera battery charger that you only use once in a blue moon and then have to buy a replacement because you can't remember where you put it (that would be me, then ) - when you put it away you go to 'C' for 'camera' and write down where you put it.

Of course for people who are organised and tidy this is probably not an issue...

The other OS tip I have is

'stay away from amazon and e-bay when you are bed-bound and feeling fed-up'........

Oh I like the A-Z notebook idea, going to pinch that, I have been thinking ( mind you only thinking) of where I have put the rechargeable battery charger, not for recharging batteries but because it has a usb charge point on it and means I can charge my mp3 player without having the laptop on, as of course I never remember to charge it when its on. One of these days I will actually look for the charger but until then I will think

I have actually joined Amazon Prime as was fed up waiting to get things delivered ( my sorting office likes to keep things till they have a nice pile as I found out in the summer when my kindle didn't turn up and it was tracked to local sorting office, they sent it round by van as soon as i spoke to them and driver told me the manager likes them to wait till they get a few things for someone before delivering them, so I understood then why it always took 2 - 3 weeks for things to be delivered unless I ordered a few things with in a few days of each other) so next day delivery means they have to deliver it 'Next Day' or usually is another carrier and I do tend to buy a lot. :rotfl: Or my friend will phone and ask me to order something online for her from Amazon.

rising_from_the_ashes

zzzLazyDaisy wrote: »

Also crohn's is one of the auto-immune diseases, and it is unbelievable how many people with these types of conditions also have fibro and/or me type symptoms.

I've found out more about it from the internet / other sufferers than from any Dr/Consultant I've seen:( One Dr at our practice said did it really matter if I had related conditions as knowing what they were wouldn't make any difference to my condition or make it any better:mad: (Needless to say, I refuse to see her now & if she's the only one with appts, I wait for someone else).

Even when my tummy's settled (as much as it can be), I still suffer from overwhelming exhaustion and bad back / joints etc ....

I have been known to do really stupid things when the exhaustion hits ... some that spring to mind are putting dog biscuits in the fridge, cat food into the litter bin etc

MrsAtobe wrote: »

Another one with Crohn's here as well - does that make us Crohnies?

Ohhhhh, I like that ... "the Crohnies"

zzzLazyDaisy wrote: »

One OS tip that was given to me was to get a cheap phone book or an address book - the sort with a-z down the side - that you can pick up in charity shops and pound shops - and write down where everything is kept or where you put it when you last used it.

So for example - that camera battery charger that you only use once in a blue moon and then have to buy a replacement because you can't remember where you put it (that would be me, then ) - when you put it away you go to 'C' for 'camera' and write down where you put it.

That's a brilliant tip:T in the past couple of weeks I've had to order a new charger for my camera battery I spent about a month hunting for the old one (which I'm positive I only ever had in the kitchen ... but it's not there) and finally gave in and bought another (the original still hasn't turned up so lord knows where I've put it).

I have been totally stuck in the house before - the front door bolts (twisty key lock) from the inside and couldn't find the key to open them and couldn't use the back door as it doesn't lock from the outside.... Since then, keys are always put in the same place as soon as they've been used!:)