Giving up

magenta

Hi all,

Wishing you all a Happy Easter!


I'm slowly losing the battle against this latest flare. I've been struggling on and off over the past few months with flares that seem to be happening more regularly these days. Every joint in my body is hurting and swollen. My wrists and elbows are causing me alot of pain but it's my knees that are the worst.

They are stiff and painful from the minute I wake up and as I'm on my feet all day, they get worse over the day and then my ankles join in. The inside of my knees are very swollen and tender to touch. Even sitting/resting, they are giving me alot of pain. I'm still waiting to see if the last rheumy is willing to see me again-if not, I don't know what I'm going to do. I'm at the teary stage now and so exhausted, I just want to stay in my bed all day.

I hope you don't mind me moaning but it's good to get it out!

Magenta x

stickywicket

Oh dear, magenta, that does not sound good. What meds are you on and have you been on them long? Why should your rheumatologist not see you again? And, do you have to be on your feet all day? I'm sorry for all the questions. I'm just trying to understand.

You must feel exhausted and I can understand the tears. Can you rest up a bit over Easter?

magenta

Hi Sticky,

Thanks for your reply-means alot.

I'm on pregabalin-75mg three times a day but I'm going to have to try and up them to 100mg. Amytriptilline 50mg and recently went to GP to tell him my co-cos were useless so he's given me the 30/500mg ones. I'm still in so much pain, never had it this bad.

The rheumy discharged me as I didn't have a positive RF and they didn't think there was anything wrong with me, even though I have the onset of OA in hands/fingers and thumbs, fibro and OA in other joints. GP has referred me back to rhuemy as I've since had a positive RF.

Workwise, I'm on my feet alot of the time and I'm working in a ward that's on the seventh floor so it's constant up and down of stairs (use lift for going up-which annoys people I work with). A girl in my work is giving me a hard time too about my part-time hours and taking time to leave early. Don't think that's helping with the way I feel just now.

I'm normally a positive person and try and get through my day with a smile but it's getting harder and harder.

As for rest at Easter :shock: I'm off next week but OH not, so, I'm the 'entertainer' for the week for my 2 kids!

Thanks Sticky,

I feel better getting it off my chest,

Hope you are well and have a lovely Easter,

Magenta xxx

stickywicket

That is tough for you, magenta. I do hope the rheumatologist will see you again and quickly. If you have a positive Rf I can't see any reason why not. And, if you do have one of the inflammatory versions then mere paindullers won't cut the mustard - even a lot of them. I wonder if your GP might offer some anti-inflammatories in the meantime?

It can't be easy trying to work in your situation so, if anyone is giving you a hard time, just try to ignore them. You have a hard enough time without her.

I hope your children are old enough to help out a little. When necessary I used to resort to a spot of bribery and corruption.

I hope you have as good an Easter as possible and don't forget we're always here.

magenta

Thanks xxxx

lindalegs

Hi Magenta,

Just wanted to add my commiserations along with Sticky.

I really don't know how you manage to work and be a mum and run a home with a flare, I really don't. I was lucky I had the luxury of not working and yet I still found it hard.

Chin up chicken, try to get some rest, your poor bods tired.

Love,

dreamdaisy

I too concur with sticky - and legs too. You are under a great deal of pressure with work, home life and illness. I hope you are able to manage some rest over the Easter break but somehow I feel that's unlikely. Take care. DD

barbara12

Oh Magents we dont mind one bit, you must be in so much pain...I really do feel for you.
I just wish I could help, but I am always here to listen, and it does help to talk about things..you take care
Sending you loads of gentle hugs ((((())) xx

JuliaHod12

Oh dear Magenta
I do feel for you........ :-(

It is a struggle trying to juggle all the balls on a nrmal day, but with a flare it must be even more exhausting...........and i can fully understand your wanting to stay in bed!

I dont know how you cope with it all

I do wish you well and am always here to listen

take good care

Julia x

Folara

Hi Magenta

There's not much more I can add other than a big hug.

Keep your chin up lovey.

Fols xx

stickywicket

Hi Magenta. How's it going?

magenta

Hi everyone,

Just want to say a big 'Thank You' to you all! I'm touched that you've taken the time to reply.

I'm a bit better today cos I've managed to get a good rest. My OH, John, is wonderfully supportive. I slept till 10 this morning, got up to take my painkillers and he said to go back to bed but shopping was needing done. Went back to bed at 3 and got up at 5. Obviously needed a good rest. It helps when I'm not on my feet all day and I'm not under any stress.

I've told the dr that I feel like I only live for work and my time at home suffers-he duly replied that I'm depressed!!! I think I manage through the day on adrenaline. I need to work so I manage but it's getting harder. Plus, I don't get much support from my colleagues.

I'm ok, really, but frustrated at the lack of help from the NHS-whom I work for. I need the proper meds to allow me to function and I'm not getting anywhere. I'll keep pushing it though.

I again want to say thanks to you all for your kind words,

love Eileen xxx

applerose

Hope you manage to get some rest over Easter. How old are your kids? Are they able to do some things for themselves and maybe help you out a bit? They are a lovely bunch on here and always ready to listen.

skezier

Hi Eileen,

Flower I am sorry i am late and sop glad to see you got a good sleep and rest up for a bit.

Entertaining the kids can be hard but easier if the weather would be kind to you all. Can you get them to do quiet things... no I know they are kids but me young foster one used to be good at trying to draw and paint and although she made a mess at least for some of the time I was able to sit and rest a bit... then she would be bored and we would have to go do something.

I also spend too much time on my feet but I have the choice of staggering (literally sometimes) as I am self employed but the lighter evenings make for longer days work wise and well how you do the stairs I really don't know as I have had to exchange a few steps for a ramp.

Can ocky health help re work? The fibro might mean you qualify for some help and modifications at work?

The pregabs are hard to get on to a good load but you will get there. I think i did the 75 3x for a bit then 100 in the morning and the evening with the 75's in the day and then 150 3x a day till I could do 200 and that then remained 200 2x for a while.

When the pain got really bad one day I did the 300 and have been ok on them ever since. They used to work better but thats what the oxy is for... mind.... having trouble with that as you know.

Sorry kinda went off on one there.

Leaving you a (((((((((( )))))))))) and a hope that you can get a bit of a rest up and the kids will be kind to you. can they visit folks here and there so you can get a bit of a rest up?

You hang in there and maybe this time the rumo will do right by you. Love and a cuppa Cris xx

lindalegs

Just to add Eileen that when my boys were little I would make a list during holiday times.

The list was numbered 1 - 6 and there were four 'nice' things to do and two chores. If they said they were bored they rolled a dice and whatever number it fell on they had to do whatever the list said. It was a good game, didn't always work, but it did amuse them and if they seemed fed up of that list I'd make a different one sometimes with their input.

Example of list which will change with the age of your children and what they like to do.

1. Pick up three things from the floor and put them away
2. Do a jigsaw
3. Ride your bike 10 laps of the garden then have a drink
4. Wash the dishes after the next meal
5. Sing four songs
6. Draw a picture of something beginning with 'S'

Maybe something like that might help.

Glad you got some rest yesterday.

Love,

skezier

Hi Eileen,

Also cbbc have some good films this holiday.... as long as they haven't seen then before but also its a balance in letting them watch too much tv v/s the need to just rest and switch off.

Leaving another ((((( ))))) Cris who is watching 5 children and it just now :oops: xx

stickywicket

magenta wrote:

I need the proper meds to allow me to function and I'm not getting anywhere. I'll keep pushing it though.

Do that, magenta, and remember we'll be behind you.

If your GP is unsympathetic, is there another in the practice you could go to?

I like Leg's suggestion for the kids.

magenta

Hiya,

My kids are aged 8 and 6. They are wonderful, they know my limitations and know I need to rest. It upsets me when I can't do everything. They are very energetic and they want mum to chase them, play tennis/football/cricket etc..... It's a shame for them really.

CBBC is very good and they love Nikelodeon-I hate it but they're actually more interested in going out to play, even when it's raining.

I'll try the list thing, that's a good idea Linda. I usually take them out to places they like. They've got a favourite park and we're near to Glasgow Art Galleries, so there's things for me to do with them but NOT at 8am :shock:

Cris, hope you're managing with 5 kids, I'm exhausted even thinking about it!

Thanks for the ideas everyone,

love Eileen xxxx

emsjane

Hi Magenta,

So sorry to hear you are struggling so much and it makes me appreciate that my children are now 16 and almost 18, as i know i wouldn't be able to manage little ones nowadays! And with having to work so hard, i don't know how you do it!!!

And i understand completely what you mean when you say you're at the teary stage!!!!

It's typical that you work for the NHS, and that your work colleagues arn't supportive, you'd think they be more supportive than most!!! Are you a nurse???

All i can do is send you some cyber hugs ((((())))) and hope that you get some well deserved rest over easter and feel abit better for when you have to go back to work! x

magenta

Hi Sticky,

My GP is the only one in my practice that listens to me. I've been told to stop taking anti-inflamms because of my tummy but I know there are other options out there but my GP won't do anything unless a rhuemy prescribes it.

I'll get there,


love Eileen xxxx

stickywicket

Did you take a stomach protector with them? (Lansoprazole or Omeprazole?) I know not everyone can take anti-inflamms even with one - me, for instance :roll: but they help most. Keep pushing for that rheumatology appointment.

magenta

Hi Emma,

Thanks. How are you today-ok I hope?

I'm not a nurse, I'm a pharmacy technician!! That's why I get frustrated cos I know what meds are out there.

My colleagues are ok until I start having to go to hospital appts. or have to leave early cos I'm knackered (always take annual leave for this!). That's when I find who are the ones to trust and at the moment, there's only 3 out of 50.

One girl in particular has made it very difficult for me and Friday we had a massive arguement. I'm now going to have to get HR involved-the joys!

Thanks,

Eileen xxx

magenta

Hi Sticky,

I take Omeprazole but it's not helped with the anti-inflamms. I now take it because of what they've done to my tummy. I've tried loads and the list is getting very long of meds I can't take.

I also, unfortunately, seem to be quite sensitive to meds. I'm the person that has an interaction that only '1 in 10,000' will have

magenta

Hi Lynn,

Thanks for your lovely message.

The kids are out playing with their pals just now-it's actually sunny and warm now. We've been getting rain and it's been miserable for them stuck in the house.

I'm finding it hard just now and fell out with my big sister yesterday-not like me at all. I'm very grumpy and short tempered these days too, again not like me. I think everything just getting to me and I need to snap out of it.

I'm going to walk to the shops (on my own) and get some fresh air.

I'll try and relax tonight. How are you? How's the back? Hopefully you're recovered from the op.

Take care,

love Eileen xxx