Trying to be OS with a Chronic Health Condition

rising_from_the_ashes

lostinrates wrote: »

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 meant to add that I totally agree with this.

I am very rigid in the mornings when I get up (the AS/Crohn's make my joints feel like they've siezed up and the Fibro feels like I've got a corset 3 sizes too small around my ribs) - doing the simplist things like putting on socks are a daily challenge and I'm sure some people would be in stitches seeing me try to do this.

I found that taking the dog for his walk really, really helped loosen me off - when we first set out, I was slow and walked badly/stiffly etc but would gradually loosen off and by the time we got home I was able to have a shower/get dressed reasonably well.

Very, very sadly I lost my boy 3 weeks ago - apart from the devastation of this, I've really noticed a difference not having the morning walk. I don't loosen off enough and am sore a lot longer/more during the day.

I have tried going for a morning walk by myself but TBH it's just not the same (hate walking without him, esp at 5 am when the streets are dark and it's creepy - odd as I've walked the same route with him for 5 years and it's never bothered me at all).

In the 6 years I had him, there were only a handful of days that we didn't go out (usually really terrible weather) and it never felt a chore .... now I'm trying to force myself to do it as I know it helps so much, but just can't.:(

lostinrates

rising_from_the_ashes wrote: »

I meant to add that I totally agree with this.

I am very rigid in the mornings when I get up (the AS/Crohn's make my joints feel like they've siezed up and the Fibro feels like I've got a corset 3 sizes too small around my ribs) - doing the simplist things like putting on socks are a daily challenge and I'm sure some people would be in stitches seeing me try to do this.

I found that taking the dog for his walk really, really helped loosen me off - when we first set out, I was slow and walked badly/stiffly etc but would gradually loosen off and by the time we got home I was able to have a shower/get dressed reasonably well.

Very, very sadly I lost my boy 3 weeks ago - apart from the devastation of this, I've really noticed a difference not having the morning walk. I don't loosen off enough and am sore a lot longer/more during the day.

I have tried going for a morning walk by myself but TBH it's just not the same (hate walking without him, esp at 5 am when the streets are dark and it's creepy - odd as I've walked the same route with him for 5 years and it's never bothered me at all).

In the 6 years I had him, there were only a handful of days that we didn't go out (usually really terrible weather) and it never felt a chore .... now I'm trying to force myself to do it as I know it helps so much, but just can't.:(

Have ou thought about finding a dog to walk with via the Cinnamon Trust? There could be someone near by whose dog woul like a walk and who can't manage it.

prepareathome

rising_from_the_ashes wrote: »

Very, very sadly I lost my boy 3 weeks ago - apart from the devastation of this, (

Oh I am so sorry to hear that, my heart goes out to you, I have 3 but they are all getting on now - 2 14 in Jan and other just turned 13 and dread the thought of losing them.

I know its to early but maybe in the New year you will be able to rehome a dog, as I know training a puppy is not something that would be so easy, but sadly so many older dogs in places like the Dog Trust homes.

Hugs:A

Chickenopolis

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))

daska

I'm with you all on the organisation, it really is key isn't it! I have set places for everything important and go nuts when people move them because it makes life so much more awkward. Being naturally OS (or even just a wannabe) means that ME, FM, MS etc impact on how you live enormously, far more than people who are happy to get everything they need from the supermarket and warm up a ready meal.

You say your OH loves cookery programs, does he like gadgets? I have gadgets, lots of them, to take the edge off the work that has to be done and give me more 'brain time'. The irobot hoover is a favorite, place it in the room, turn it on and shut the door... wow! Induction hob, the ability to really control the heat combined with a timer means that if I get distracted I'm not at risk of burning supper for the third time that evening. But the reason I ask is that my prize gadget is a Thermomix, that one fabulous bit of equipment has got me back cooking from scratch. It doesn't do everything and it's not cheap (£850 unless you're lucky enough to get hold of one via ebay) BUT I can't begin to describe how it's revolutionised what and how we eat. No more having to chop things up by hand, get out a separate blender for soup etc. We've sometimes gone for months alternating between ready meals and pasta and bottled sauce. Now I can cook a curry from scratch in 20 minutes using one pot and no knife! My family were laughing (very loudly) at my buying another gadget, and then they saw it in action - my cousin who has FM bought one less than a week later. And in terms of moneysaving, while the initial expenditure is high but the running costs are very low, apparently it's cheaper than the equivalent cooking on an induction hob (which itself is cheaper than electric and gas). So, if he's a gadget person, could you persuade him into the kitchen using one of these? (Having raved I should perhaps point out that I'm not linked to the company in any way and don't sell them LOL)

mardatha

"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 "

Ooooh thats me, I do that when am bad. Am just coming out of a slump today thankfully. I can be fine for days then fall over a cliff or walk into a wall , no rhyme or reason to it. My all -time best was the day I put the firelighters in the freezer. Took us ages to find that one :rotfl::rotfl:

daska

mardatha wrote: »

Ooooh thats me, I do that when am bad. Am just coming out of a slump today thankfully. I can be fine for days then fall over a cliff or walk into a wall , no rhyme or reason to it. My all -time best was the day I put the firelighters in the freezer. Took us ages to find that one :rotfl::rotfl:

Brilliant, it'll take something to match the irony of that one LOL. I think my funniest was making tea (while making toast for DS2) and pouring the in the marmite pot.

zzzLazyDaisy

I once threw my car keys in a waste bin in the high street with some litter. I was 30 miles from home and had no idea what I'd done until I got back to the car and couldn't find them. My then OH had to drive out and bring me the spare set of keys. I was not popular.

And even then I didn't learn - I've left them on shelves in shops and supermarkets when I stopped to look at something, and then had to retrace my steps in a panic (I've done this a few times).

Now I never carry my keys in my hand - not even if I am only popping into a shop, or on my way back to the car... I don't trust myself... :cool:

zzzLazyDaisy

rising_from_the_ashes wrote: »

Very, very sadly I lost my boy 3 weeks ago

I am so sorry to hear this (((((hugs)))))

Seakay

I'm another with fibro although it's been described as atypical and in facr I share a lot of symptoms with my sister who has ME.
Another source of information that you might find useful is
http://foggyfriends.org/
run by two ME sufferers it tries to avoid conflict and heavy handed argument but has a lot of information about how individuals cope, treatments tried and also help and support for relatives of sufferers.

There are more of us in the world than you would think, I'm amazed at the numbers that I've come accross just on the couple of threads that I look at regularly.
ME etc has almost always required an appeal to get benefits of any sort because the symptoms etc don't fit into the tick box system, and no one medically qualified is going to look at the forms until at least the appeal. ie your medical needs are being decided by low grade admin assistants.

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?")

My sister has never applied for the DLA she obviously ought to have because the health set backs caused by application might be irreversible and she can't bear the thought of getting even worse.

That being said, by inclination or necessity there are a lot of us getting seriously old style in our money saving ways, so there is always help and support to be had on these threads, even when you are too tired to post!

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!