Unlucky Dip

Bagpuss123

When people say where have you got the arthritis?! I say it’s like lucky dip, I never know. Jaw, neck, left shoulder, right shoulder, both, elbow, either both, knees, either both, feet, hands, particular fingers....sometimes they wish they’d never asked! Lol.

Rheumatoid arthritis! On a positive note today I’ve managed to get showered, dressed, empty the dishwasher, fill the dishwasher, drop daughter at work, make 2 cups of coffee and toast. I’m grateful for what I can still achieve, a day at a time!

Having been on prednisolone for several years, my Consultant wanted me off it, which I did reluctantly. I’m now struggling again with day to day tasks, pain, stiffness and fatigue.

I have booked an appointment with the GP, 9th August is the earliest appointment! I want to talk to him about pain medication, currently take paracetamol or co dydramol. Have had tramadol in the past, although all any of them do is dull the pain, it never goes altogether.

I’m also looking at making my life easier at home with gadgets, particularly pill poppers, travel kettle and a purse to carry cards. I have found the information on this forum really useful, especially making life easier post!

So a big thank you to you all.

Cx

dreamdaisy

I empathise with having to stop the oral steroids but they affect the while body, not just the naughty bits. They thin all body tissues (including bone) thus weakening not only the skeleton but heart, lung and general muscle tissue which I thought a big price to pay for the illusion of being 'better'. I took them for three years and took nearly a year to come off, I tapered very slowly so my body had time to adjust and to get used to making its own supply again.

Pain killer / pain relief are complete misnomers, as you say all they do is dull the sharper edges. The stronger ones remove us from the pain, not vice versa thus rendering us not able to function as fully cogent beings. Learning to live with pain is far from easy but there is no escape from it, it is the ground elder of our Iives and drives all of us demented. I keep to 30/500 or 12.5/500 cocodamol, usually two in the morning and two on going to bed, they help me drift off to sleep but sleep is shallow and easily disturbed thanks to pain-breakthrough often caused by my dreams. My GP has offered more medication but I refuse, I'm not interested because I take enough.

When people ask me where my troubles are I say that my ear lobes and eyebrows are fine, that halts the conversation very nicely. I dislike talking about it because it shifts my focus on to rather than away from, within no time to all everything can feel worse. People also prefer to talk about them, apparently their tedious and boring lives are engrossing to at least one participant in the conversation.

As for improving the quality of life via gadgets you can't go wrong with a cordless vacuum (having one for each floor of the house is essential). Changing the way one does thing is also a useful skill to master, all of this has been covered in that thread and it's worth rereading every now and again because one inevitably forgets some of the hints and tips.

As for the thank you you are more than welcome, we know our stuff and will always try to help. Many more read than post which flattens the forum but as we are all flattened maybe that is not such a surprise. DD

stickywicket

Thank you for the thank you, Bagpuss Every bit helps.

I can only second all that DD has written. Steroids are seductive little monsters, painkillers don't (unless you take them to oblivion levels) and people, for all their polite questions, are rarely much interested in our replies. And why would they be? If I find conversation about my arthritis boring I'm sure others must.

Gadgets are a godsend, even more so now that many are becoming mainstream. I, too, love my cordless vac but the current winner is the walk-in shower with stool and grab rails. I also think converting my narrow, deep kitchen cupboards / shelves into pull-out drawers was one of my better ideas. Not to mention the flask with a top handle which enables me to take a cuppa into the garden (and hang onto the railings with my other hand while going down the steps. Actually, it will also take wine or cider

Bagpuss123

Thanks so much for your replies, I’ve found out more today about steroids than what my consultant told me. He just wanted me off them. I feel better about being off the steroids now!

I’ve been looking at the cordless vacuum cleaners too! Sorry Hetty but you’re too heavy for me, I’m trading you in for a new model!

BettyMac

Lucky dip?
What a good way to describe the joys of RA.
I find people who don’t have it struggle to understand when a different joint is misbehaving every time I see them. I guess you only really know this disease if you have it - or have watched someone close dealing with it.
For me it’s like a pinball machine. The inflammation pings about all over the place, sometimes getting stuck in one corner going back and forth.


Cordless vacuums?
Good idea to try before you buy.
I bought a well known brand and had to give it away because I couldn’t work the trigger it needed to make it go. I need one with an on/off switch.

I’m another who was on steroids for far too long. It took me a very long time to get off them.
I still occasionally need a shot of depomedrone in the backside when I’m having a bad flare and am currently benefitting from such while waiting for the Benepali to exert its effects.
I suppose I’ll never know if the years of steroids are completely responsible for my osteoporotic lumbar spine - since I didn’t have a DEXA until after I started them.

Pain meds?
I rapidly discovered that many of them affect me so badly that the pain, ghastly though it is, is marginally preferable!
I tend now to stick to simple analgesics to take the edge off things. It’s always worth trying everything they prescribe as there might be something that suits.
Loved the comparison of pain to ground elder - pernicious stuff.

After many years of worrying about side effects etc, I’ve recently come to a conclusion about all the meds I’m on.
They give me a better life now when I’ve still got a bit of time on my side. I may have to pay for them later but at least I’ll have lived my life while I had it. I want to enjoy the grandchildren who are beginning to appear!

stickywicket

I try virtually every piece of equipment before I buy. It can sometimes restrict the opportunities but it's essential with my hands...and feet....and bumpsadaisy. My cordless vac came from a local small shop but I phoned in advance to see if I could have a go first. Large electrical stores feature regularly as does J. Lewis.

dreamdaisy

It was a rheumatologist nurse who told me about what steroids do, it can be difficult for medicos to give people the right amount of information. Some don't want to be told anything, some want to know everything, others like to tell the rheumatologist where they are going wrong (after their extensive research on the net suddenly they, the patient, are better informed. Ya think?) others cannot bring themselves to say boo to the rheumatology goose. Steroids work, they make people feel better and what's not to like about that? They con us into thinking that the disease is banished back to the nether regions of Hades.

Around eighteen months after coming off them I had a second DEXA scan (it may have been the first that flagged a warning, I honestly cannot recall). Although I had been taking alendronic acid whilst on the steroids my bones were thinning; at the second scan my density had increased by 3.8%, a good thing.

Cordless vac-wise I have the Bosch Athlet which has three speed and a slide on/off button which doesn't require being held down. I also have a GTech Air Ram (one speed and very noisy) which is foot operated. I prefer the Bosch but may change the GTech for the new bagged version as emptying these things is becoming more challenging (and I am fed up with washing the filters, my tolerance levels for chores are dropping by the day!). DD

Airwave!

Dishwashers that stand on the floor and ecpect us to bend over to empty and fill them should be banned! Kitchen design? That doesn't happen, does it?

Can I put this rant into next weeks allowance please?😎

daffy2

Airwave! wrote:

Dishwashers that stand on the floor and ecpect us to bend over to empty and fill them should be banned! Kitchen design? That doesn't happen, does it?
Can I put this rant into next weeks allowance please?😎

Kitchen design is what you make it, appliance design is another issue. There are alternatives - counter-top and drawer models, and also in-sink models(try googling -there's a youtube of a 1949 model!). It's the plumbing that is the weak point, hence floor-standing next to the sink - same with washing machines - as that's easiest and cheapest(and less likely to cause problems). In this country we've been late coming to the dishwasher so alternative designs are taking their time as well. Decreasing living space and increasing demand for independent disabled living may hasten things along.