Diagnosed with Rheumatoid Arthritis...........house falling down around us!!

Penny-Pincher!!

ShelBell wrote: »

SLE, fibromyalgia, psoriatric arthritus, interstitial nephritus, iritus, uveitus, postoral hypotension, shall I go on?

These days hubby likes to play the martyr a bit when I ask him to do something for me, but if I move to do something myself he jumps up :rotfl:

Your OH & my OH would get on well, but TBH on most days I can just about sit up, let alone get up:rotfl: I have many different illnesses, too many to list.

Hope today is a good day for you.

TC

PP
xx

mummysaver

Hi loopylinz! I have to say that I don't have any experience of RA, but reading these posts just made me wonder about different gadgets and ways of doing things that might help you.

How about a travel iron, then if you were desperate for something and your oh wasn't around, you might be able to lift it better than a normal one? Obviously it depends on the sort of day you're having I guess.

Then I was thinking about lifting stuff, don't forget that you can get travel kettles or heat your water in the microwave, your oh could also help you fill a flask, but I suppose the weight issue would be a problem again.

Planning and freezing food I do know about though, things like soups are great, and can be drunk from a mug if your hands are too sore to grip a spoon, and a slow cooker is brilliant for casseroles, bolognese, and all sorts of stuff, that can then be frozen in portions. Perhaps writing a list of all the meals you like and then gradually building up a stock of them, by cooking extra the next time you are planning to make whatever it is, would be a good way to build up your freezer ready meals.

Lately I've been buying lots of reduced veg and preparing it and then freezing it, everything from roast parsnips to just chopping up carrots so they can be used from the freezer. If your veg are prepared when you have a good day or have some help (and yes I rope in whoever has descended for coffee when I'm chopping and peeling, there's a price they have to pay for eating all twinks hobnobs lol), then just grabbing a bag from the freezer is going to be easier on one of your Arthur days!

Don't forget your storecupboard either, things like beanfeast make a really quick and easy meal (you can add a can of toms, some frozen veg and dish up with pasta, quick and easy bolognese) as does any number of tinned or dried ingredients, the storecupboard thread is a great source of inspiration!

Looking for gadgets that will make your life simpler sounds like a great idea too, I like the idea of cooking in a basket, might try that for the kids, as they struggle to lift my cast iron pans! Only you can know which ones will work for you.

Good luck and take that notepad into the dr, it'll help you remember everything you want to ask and you can also get your oh to write down the answers for you, which will mean you can listen more easily and concentrate, in case they say anything you need to query, andthey'll be pleased that you won't be phoning to ask them to repeat stuff!

ShelBell

If lifting the kettle is difficult you can get a tipping device from most mobility shops, fill the kettle with a mug (or get OH to fill it to the top in the morning) and then you just tip it straight into the mug.

Penny-Pincher!!

ShelBell wrote: »

If lifting the kettle is difficult you can get a tipping device from most mobility shops, fill the kettle with a mug (or get OH to fill it to the top in the morning) and then you just tip it straight into the mug.

Dont know about you Shelbel but sometimes if OH has to go out for a little while, he will make a small light flask for me as its easy to pour and not scolding hot either.

PP
xx

LoopyLinz

Thank you so much for all of your replies, have already started putting a lot of it into practice!! Mind you still seem to be waiting on one of those 'good days' so I can work miracles! lol!

Anyway, tonight I have sat down with my little note book in order to make a list of things that I want to ask my GP when I go to see him next week. I appear to be having some kind of mind blank as I cant think of one single thing. All I can think of is screaming at him to make me not be sore anymore and quite possibly slapping him around the head just for good measure! lol No not really but might make me feel better for just a second, not too sure why its his fault today...........but well it just is!!

Linz xoxox

metherer

Hi Linz (& Arthur!)

I haven't had chance to read the full thread, so apologies if these ideas are already mentioned.

1) look at your wardrobe and decide what REALLY needs ironing. I live in a suit during the week for work, and I own only one top that actually needs ironing. (So I very rarely wear it.) Everything else, including all DH's clothes go on the line or in the dryer, and then get hung/folded and put away. No ironing as we both hate it.

2) Bulk buy peppers, onions, and other veg. Prepare them, ie chopping the onions and peppers, and freeze them in labelled tubs. That way on a bad day you can tell DH to add a handful of that, a bit of the other, and a dash of wotsit and a lovely meal will result. It also means you don't end up pulling a bag of peppers out of the fridge only to find they are all mouldy. (been there..)

3) similarly, batch cook. If you are having bolognese, make double/treble and freeze the excess in tubs. (I personally find tubs stack better than bags) Just don't forget to label them as it can be hard to tell a bolognese from a chilli. Have you ever had chilli with pasta? We have..

4) I would make a list of the jobs that need doing regularly, then when you are having a bad day your other half knows what needs doing and how.

5) most important - keep your chin up. If you are feeling worse for wear just remember we are all here to chat when you want.


Metherer

amanda40

Now this is going to sound really stupid but when you say you kept a journal, just detailing how bad the pain was? Where it was? That sort of thing, or did you detail things like what you had done that day to see if you could find any sort of link? Also do you think it would be worth keeping a food diary to see if there is a link there?

xoxoxox[/quote]

No I just wrote down where pain was,( with a fat pen - easier on the hands!) as some days it can be my wrists, thumbs , knees and ankles, then suddenly it is my shoulder blades/collar bone and my ribs. Also wrote if I could bend fingers, just all general notes for myself so when I went it to see him and he asked how I was i didnt just say 'Great thanks:rolleyes: ' As more often than not I go in then out and remember things I forgot to mention!! I blame the RA and PA for that too:rotfl:

My work have given me a few usefulthings too - electric stapler, flat staple remover, fat pen and pencils, and a big comfy chair!

I have one of those one touch tin openers - best xmas present last year, saves asking DH or nieghbours to open a tin. OT also gave me two different types of openers, one for jars and one for bottles. My DH always makes sure the milk etc is open before he heads to work in the morning although DS1 is getting good at opening things for me now. You will get there it just takes a bit of time and swallowing your pride and accepting help.

luckys_mum

Hi LoopyLinz, sorry to hear of your RA. Take care when taking anti inflamatory tablets. They can cause upset stomachs. Try not to take them on an empty stomach. I too have spinal arthritis and degenerative disc disease, but cant tolerate anti inflamatory tabs.

philgee

Very sorry to hear about your diagnosis. I started having pain in my knees aged 23, but had to wait another 2 years for a diagnosis of RA. By that stage I could hardly walk. The day after my diagnosis and the cortizone injections in my knees and elbows (had to have them drained first :eek: ) I was totally pain free. I have some pain constantly, but usually at a low level, thankfully.

There's lots of help available, such as from occupational health at your local hospital, and plenty of gadgets to help as well - things like jar levers I find very helpful due to some loss of strength in my hands & wrists.

If pain gets too much, you must talk to your doctor about cortizone injections and other types of pain relief. I had several injections in the early days, and have been on several different painkillers over the years (now on meloxicam once in a blue moon ). I have considered a TENS machine, but not actually got round to getting one, but I know others that swear by them, plus they're chemical free.

I find a nice warm shower or bath frees me up nicely in the morning & I used to do the washing up in the morning to help with my hands (let them soak in the water!) but now we have a dishwasher.

It's worth mentioning though that if you have swelling, use of cold rather than heat may be of more benefit.

Don't despair - and don't let it put off having a family, unless you are put on any medication that could cause birth defects of course. We were very lucky timing wise, as found out my wife was expecting the day after my medication was changed to methotrexate from sulphasalazine. Even if you are on something where pregnancy is a no-no, your doctor should listen to you and if necessary change your medication.

Regarding cooking, I usually help out with peeling the veg, but sometimes my hands are too painful. For chopping, we have a device called a Euro Chopper (ooer!) which is great for onions!

Heavy pans can be a pain, but for veg, rice etc, try using a steamer.

Good luck and take care of yourself!

ShelBell

amanda40 wrote: »

You will get there it just takes a bit of time and swallowing your pride and accepting help.

This is the best bit of advice in the whole thread to me. It took me years to swallow mine! I only got a blue badge last year and I've been bad for 16 years now! I would go on long walks with the family with hubby fretting at me and saying 'you shouldn't be doing this, it's too much' only for me to snap at him 'I CAN DO IT'. Of course, I couldn't, and would pay for it bitterly later on! I got a mobility scooter last year, which was hardly used as I was too embarrassed, now it comes everywhere with me and I'm getting better at using the ones in the supermarket too.

I can imagine RA would be similar, because of age. It's blummin hard being disabled and young, as it's not the norm and it makes you feel like a freak. I'm welling up now just thinking about it. Getting over that and accepting help is not an easy thing to do.