So my hospital runs a six week course on understanding inflammatory arthritis. They put you on it as it's supposed to help you manage your disease better.
I started mine today and have come away feeling really depressed. Each week there is exercise, followed by relaxation followed by a talk. I got there to find they normally book more people on than they cater for as people drop out. This course however everyone turned up so that's 15 people. I'm in my mid 40s the rest were retired.
The exercise was what you get in care homes and I felt embarrassed. I don't do relaxation like this and stressful in a group you don't know.
Supposed to be coffee half as through. There was but not enough cups so everyone got a drink but me (petty I know but...)
Group got to suggest topics to cover in coming weeks. I suggested how to deal with work and employers. This wa crossed off as the group felt it wasn't relevant to them (well no they are all 70 plus but I hard 20 years to go yet)
Lots of them going on about how great they are feeling on the drugs that have made me really ill. Then we get an hour on what a nasty serious disease we have that can kill us in lots of ways and crippledom will be he future so we need to manage it.
Sorry to vent but I came away thoroughly depressed. I think they should try and match groups better. Sorry to anyone older but I felt completely apart and written off. It was like you have RA so we are now going to treat you like a pensioner. Now I would love to retire but I will probably still be triying to work at 80.
What experiences have other people had with these courses. Was mine a bit of an exception....
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Frankiefarr
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I both agree and disagree with you on this one - but this is purely just in my opinion.
I have never actually been one of these but would like to be given the opportunity to go on one.
Firstly what could be so wrong in gaining a better understanding of your condition.To have the chance to gain in depth knowledge of something which attacks your body and affects your life on a daily basis is good.
Ok there will be some things which are depressing that you wouldn't want to hear about but.Its best to know about the condition as a whole not just pick out the better bits you need to know it all and how to manage it.
But I totally agree with you on the attendees.This doesnt just happen with courses like this it does with most things- the reason for this is funding and money available.
I think that attendees should be selected on the stage they are at with their condition and their abilities/ age- most important.
If they had arranged a course that 80 people could attend then started to narrow it down to the sub divisions there may be 3 or 4 of these and so would be left running 3 or 4 courses with approx 20-30 people in each.
Obviously to run 3 or 4 courses would be more expensive than just one course .
The only problem is it now renders future courses for you a waste of time,
Retired people are not going to be interested in spending time hearing about employment rules and work requirements Same as you will have no interest in your retirement options so it has now made all those future sessions useless for everyone .
The cup of coffee,altho you said it was petty ,it may have been in the whole great scheme of things but after having such expectations of an event which could have been excellent ,falling flat like that ,then it would have annoyed even the most patient/ calm person.
So future courses are now going to be a waste of money for whoever is staging these sessions,and folk will have gained very little from it.
Needs to be fed back to the organisers/ sponsors of these courses.
I'm an old codger Frankie, but I quite agree with you.
If I were you ( In can just remember being 45)! I'd get there early next week & explain to whoever runs the course, you really think you will not benefit from it as the subjects being discussed won't apply to you for another 30 years !That might sound ungrateful...but why sit there being bored out of your skull?.
Life is too short to spend the next 6 weeks being depressed!
Or you could just phone & tell the organisers how you feel
Good Luck! Let us know how many Browny points you lose !
That's a great idea about ringing the organisers,and explaining about how isolated you felt from the rest of the group - and I guess you'd be able to tell from their attitude wether it would be worth wasting anymore time in going back to a course that is doing nothing but causing you hurt and stress?!
Hope all works well for you - I've yet to be offered one of these courses,but then I'm only 43,and still pretty new to the whole disease(was only diagnosed just after 41st birthday) I tried working for as long as I could,but it got to the point where my body just couldn't cope with the stress anymore. I've always looked forward to going back to some form of work in the future,but I've had to give up on the idea of going back to the previous industry I was in(too harsh for my conditions,regardless of rules and regs put in place,we all know things don't work out like they're meant to!) so I'll prob be looking at a part time job local to me somewhere in the next year or so.... this is my first winter of almost having my disease under control,so it's a huge learning curve for me trying to adjust to what I can and can't do,but I'm willing to give it a go,as for the first time since leaving school I find myself without a job and actually having to watch the pennies.... something I'm not used to,and don't want to get used to - I'm not a sedate person,so to think of just sitting for the next 20 or so years is more depressing than the diagnosis in itself!
Good luck,and I hope if you do go back,that it actually becomes worth your time and effort x
What if they've had the disease for many years and that was when the treatment was nowhere near as good as it is now.
I'm sorry but think you sound a bit sad and perhaps they were trying to give you hope. The new 60 is 50 now !
Don't go again unless you really want to but you don't know how many of us are elderly as you put it, yet may have climbed mountains, run marathons and held down very good jobs or had great carers whilst having this disease. I think you should not judge by age and if the NHS had unlimited funds perhaps they could do as you suggest but its highly likely that it would need volunteers to do that so why not contact the hospital and offer to volunteer to learn more and host a similar meeting.
I should have added this course is for newly diagnosed patients. It is assumed you will attend three hours each week. Okay if you're retired. They clearly have given no thought to those that work. It's really being used as a cheap way of physios and OTs not seeing people individually. As soon as you are on the course your individual appointments are stopped.
It is entirely directed at the over 60s and it is quite odd to spend three hours being treated like you are 70. I've got all that delight to come not sure I need it now when I'm worrying about keeping my job and my house.
They also don't seem very on top of the disease knowledge wise
Quite agree Frankie...when I was working there was no way I had three daytime hours to attend a course.
I agree that ecomonies in the NHS are biting hard, as you say Physios & OT's might have done their exams, but it doesn't seem to me they are taught much about RA. A few years back I went to an NHS physio who said she couldn't helping me off with my jacket as she was "assessing me" ! I could hardly move my arms at that time......she asked such daft questions I decided she was not the one for me!
Went to a private physio ...at the time I couldn't go anywhere to spend money, so I paid for it myself! It did help, but Mr Depomedrone helped even more!
I wonder if this is at the hospital I used to attend? Sounds exactly like the patient education course I attended. I was the naughty kid in the class, just couldn't help myself.
I think there were a few useful snippets of information, but overall it was kind of humiliating and a bit odd. Plus I had a round trip of nearly 2 hours!
I'm not even sure if the age thing is relevant .... there were only 8 of us (I think) and a couple of people were in their 30s. And anyway nobody likes being treated in a patronising manner, whatever their age.
I can understand how you feel I can't get a straight answer when I ask what this decease will entail in future years so I would like to go on such a course but would have also felt let down in your exsperiance too
Sadly Junebee no one ....not even the most experienced Rheumatoloy Professors p/researchers can predict how each individual will progress with their RA. Each diagnosis can go many ways.
Personally at the beginning of this RA journey, I would not have wanted to go on a course with people in wheelchairs, struggling to walk or being in obvious pain. It would have terrified me!
I was diagnosed 18 years ago...i've had ups & downs like everyone, but I find taking it as it comes is the only way I can cope
I didn't want to be told ....You'll be in a wheelchair before you are 60, or your type of RA doesn't go into remission. So I ignored what I was told.....I'm not exactly Ennis-Hill now, but I can walk unaided & thanks to Dmards & now Biologics I now have very little pain.
So I take every day as it comes...if you are scared of Mtx or any other Dmard, remember for some they protect your joints being so damaged that you would become disabled but for others they don't help at all.....but if you don't try what is offered to you you will never know!
I just think I've got RA & the drugs I take are controlling it, so for now I just get on with it!
Thank you for this input I was told on my first visit to rheumatologist that I would end up in a wheelchair as I have aggressive Ra the was 2013 I have tried different medications all failed ready to start new treatment plan when they give me my test results on Wednesday 😊
I'm afraid that's the way it goes Junebee..if that one doesn't work try this one ....it's not like a broken leg ... you break it, plaster it all done!
You think you are getting there...then it all goes pear shaped again!
I think we all know how you feel. I know I thought it was my fault the first few drugs didn't work, & there was no HU then to see that what was happening to me was happening to people all over!
Really, really hope your new treatment plan works!.
I felt like this when I went to a Pain Clinic 4 hour seminar. There were a number of older folk there who had all the time in the world to talk about "their" problems. I didn't feel able to take the relaxation and mindfulness seriously, all I could think of was the Ladybird book for adults on Mindfulness and felt amused. I've had this disease 46 years, for the first 45 nobody was interested in talking about how I felt, it was all about handing out the pills! Maybe its done me a favour and I've built resilience, but it also highlighted the fact that pain killers, when tolerated, are only expected to be 30% effective at best, and basically, there's not much else they can offer and we have to learn to live with the disease as best we can.
I can certainly understand how you are feeling have 5 years left to retirement, is work giving you time off to go? If they are explain to hospital that it isn't meeting your needs at present and could you book onto a course being run for working age group. If it is being done in the eve I don't know about you but so tired I would be asleep.. can you make a list of tings that interest you, what you need to find out, what can help at work?
Secondly have you had an assessment at work with an OT to look at adaptations to your work needs. You and Work can apply to Access to Work for items that will make the environment easier for you. It may be a different type of chair or table that highers or lowers to your height requirement. Better back support, different computer keyboard. Specific wheelchair to use at work. There are many things, even getting thicker pens to make writing easier, adaptive pens, or a rollerball instead of a mousefor the computer. Arm rests to support your arms when typing at a computer.
Have you visited the Naidex exhibition at Birmingham NEC at end March for 3 days, which demos lots of equipment to OTs, physios and the public? It's free to attend and can try the demos. But to see everything in one day is exhausting and you def have to pace yourself. Wheelchairs/scooters can be hired for the day if you book early enough.
Everyone has different needs, however there just may be some similarities and for those people asking about exercises to do in chairs It can then prove very useful for when you are sat at office desk if you are lucky enough not to have to share!
Have a think and weigh up theprosand cons and see if wjhat they are asking for could fit slightly into the way you live yours and as people have suggested above if there isn't a group for younger people as they possibly can't be released from work, put some things you are interested in and see if a group could be formed through a notice on the wll at your Rheumy clinic as there may be others out there who want the same as you. Good luck, it's good when you do get to a group that runs in a way you feel comfortable Pam x
I think of myself as a 'group' person but still get irritated if I feel being there is a waste of time so I can certainly empathise with you! Dare I say it but that's the advantage of forums like this - you can 'home in' on posts that are relevant to you and skip the rest. I'm not sure if reading or hearing about what may (or may not) happen to you in the future is particularly helpful except to ensure you make the most of the good times. But that's just me! Btw missing out on my cup of coffee would have seriously teed me off!!
Speaking as an 'elderly' myself, I would have slunk out long before coffee time, it sounds ghastly. Speaking as someone who's run different groups myself - you need to feed back to the organisers - The facilitators need some training themselves - I'm sure they are very well meaning and good at their day jobs, but organising and running a support group is a different skill entirely.
Never heard of this before and now maybe im glad i havnt, like everything im afraid someone can do a good job with bad tools or a crap job with good tools, im sorry you had such a poor experience.
A lot of people on here complain that they cannot move so I would think the exercises are in accordance with that. Some of the people on here are young (20s/30s) and say they cannot move so I don't think the exercises are geared to an older age but rather to those most affected by RA who would not work anyway.
I am 68 and still work in a very high tech, stressful role, only two days per week but 20+ hours and I am also on call 24/7. I therefore think that perhaps you are mistaking age with severe RA.
I am very very surprised that people in their 70s are doing well on the drugs. My consultant did not want to give me anything on account of my age, then 65/66, as he felt the side effects would outweigh the benefits. Also, RA usually occurs initially in the 40s and 50s. I am very surprised that the whole group of 70+ was newly diagnosed at 70+. It is rare to get RA for the first time in the 70s. Even I had it previously at 25, and then it lay dormant for 40 years.
I don't really think anything in the NHS is geared towards the working population. It generally thinks that if you are well enough to work, then you can manage.
Re. the coffee, if you go again either take a paper cup or ask them for one. Most hospitals have a coffee bar/cafe so make a point of asking where it is.
I think you need to ask for an occupational course. Also, classes in how to manage at home would help, eg what to do if you cannot handle money in your purse, turn the door keys, fill the kettle, pour from a teapot, cut vegetables, open a can, open a door, make the bed, put on a bra, put on tights. My RA came on overnight but initially with my right hand out of action, I did everything with the left. The left hand then went and I was in dire straights. I managed out of instinct, especially as I live alone. I was working and I asked total strangers to open and lock my street door, strangers zipped up my dresses on the tube platform; I used a card to pay for everything, went without a bra or tights, got pedicures. All these things are relevant on a course but you sound as if you are now under control and not at that dire stage.
Nope not under control as I can't tolerate any of the drugs and very aggressive RA. But as you say some of us just don't have the option to stop. They only run this course so it is as it is. Apparently most of the people they see are over 70 we are in an area where there is a larger than normal population of over 65s and the whole system is geared up to this so I expect this is a reflection. They admitted the course concentrates on what you can't do. And most of their solutions seem to revolve around assuming you are retired and can just give up doing things. To be fair everyone else was retired apart from one person on DLA
What a dreadful experience. I'm an elderly'ish person, but I think I'd have walked out before the non-coffee as am nowhere near needing armchair exercises yet and the idea of looking at what you can't do appals me! Ability and age are not necessarily directly related. I can still walk the socks off my niece who is 40 years younger than me (mind you, she can open wine bottles which defeats me!)
I did have one "education" session when I was first diagnosed, with a nurse. It didn't last very long as she couldn't answer any of my questions and treated me like a child. I think that was what prompted me to become an RA nerd and find my own education. So if this course is not for you then I'm sure you could use the same amount of time to get more benefits on your own.
It reminds me very much of the biggest complaint the parents of disabled children I work with have. Why does everyone focus on what my child can't do and ignore what they can. It takes away hope
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