So many questions..........where do I begin?

JuliaHod12
JuliaHod12 Member Posts: 456
edited 21. Feb 2012, 16:30 in Living with Arthritis archive
Hi everyone,I am new on here
I've been reading so many uplifting and positive responses from you all I'm sure I will feel at home amongst you :-)

I'm 52, grandmother of 4 boys. I work full time as an administrator.

I was diagnosed (finally) with OA in my knees............I had 3 arthroscopies in the last 20 months (different surgeon the last time finally found the "arthur"). I have no cartilige left in my left knee and Grade IV OA currently........

I was told to come back and see him when I could no longer walk a mile or 500yds! I'm struggling still to manage pain and currently use Paracetamol/ Ibuprofen during the day and Co-dydramol at night........nothing ever seems enough :-(

I'm struggling also with tiredness and concentration at work........they know all about the arthur and have been quite supportive............but I am wondering if I should ask to be more flexible in my hours to allow for bad days?

Does anyone else have family that dont seem to understand the problems? My family think that because arthur can be a common problem,that its easy to cope with and I shouldnt still be in pain if I've had the arthroscopies.............!

Comments

  • barbara12
    barbara12 Member Posts: 21,279
    edited 30. Nov -1, 00:00
    Hi JuliaHod12
    And a warm welcome from me, I am a grandma and have OA in multiple joints, so if anyone understands its us lot.
    Has for family and friends, well to be honest I used to be the same when people mention they had Arthur...Its such a common disease that we dont get much sympathy.
    The tiredness is really hard, I used to put it down to taking meds, but apparently most of us get it, you do learn to pace yourself, and a big part is getting the right mix of meds.
    I suppose only you can know when the time comes to ask for more flexible hours, but I am sure it would be a big help to you .
    I really do wish you well with everything, and don't forget we are always here to talk or rant to.
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    welcome from me it not easy is it but you will know when time comes to sort hours good luck val
  • jaja
    jaja Member Posts: 135
    edited 30. Nov -1, 00:00
    Hi juliaHod12....welcome to the site..im new myself and a grandma...i have IA not OA but i think tiredness comes with both..i have read on this forum in the working matters section , good advise on reducing working hours and how to get information from other sources...i hope you find what you need....you will find good friends here

    JAJA
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Julia
    Welcome to the forum....I'm a grandma as well and have OA in hips, spine neck and ankle.
    If you could get more flexible hours it would be ideal.
    Pacing yourself is a big thing so if you didnt have to go into work or could work at home if you were really bad it would be great.
    The tiredness comes with the territory.....I used to think it was the meds but everyone seems to be in the same boat.
    A lot of family dont understand....even the most supportive family members still dont really understand because they havent got it.
    I'm on paracetamol, naproxen, and omneprazol {stomach because of anti inflamms} Also got codeine to be used when necessary....usually have 1 x 15m at night......stops me waking up as many times during the night with pain

    Love
    Hileena
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    And a warm welcome from me too mi dear..
    As on old hat with the knee arthur and arthroscopies I really understand the frustration..
    I've had both friends and family act the way yours have... Surely you aren't THAT bad etc... :x
    Extremely annoying..

    Anyway, just wanted to welcome you.. Hope that you find this place as useful as I do :D
  • frogmorton
    frogmorton Member Posts: 28,211
    edited 30. Nov -1, 00:00
    Hi Julia

    lovely to meet you :)

    sorry about the knees though :(

    In answer to your two questions - work if you can afford to do less hours it is always an option...but is it possible to alter your work area at all - maybe sit down more???

    and as for the family....it's an invisible health problem isn't it? There are leaflets available on here (the main page 'publications and resources'), to read...and some stories by people living with it and their 'carers' would any of those help you at all?? would they look at them?

    Finally have you thought about going along to your own local arthritis care support group? meeting others with arthritis can really give you strength to cope with the issues.

    Love

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Julia, it's lovely to meet you but I am sorry you have had to find us. I'm not a grandma, I am nearly 53 - :shock: (how the hell has THAT happened? - and I have an inflammatory arthritis which has delightfully led to the OA which is in my knees and ankles. It ain't fun. :(

    Families not understanding is a common plaint on here, and I for one can see why they don't. They think (and rightly so) that if you are on meds or you have had surgery the problem is 'fixed' because that is what doctors and meds do. That is true if you have a bug, or a broken limb, appendicitis or summat grotty that should be removed but with arthritis that doesn't happen. The problem grinds away no matter what meds or ops one has. Neither do people associate arthritis with tiredness: pain (true), difficulty in walking (sometimes true), needing a stick (also sometimes true) and being elderly yes (soooooo false) but tired? Not only is the grinding pain tiring so is the arthritis itself: when it's active it bites and snaps at us in more ways than just pain and tiredness is one of the signs it's being busy. Mine are both having a good go at me (despite all the drugs I take) so the plans for today have been shelved and I shall recline amongst my cushions like some fat Eastern potentate (though I doubt they drink copious amounts of Tetleys!)

    As for work, I believe there are steps one can take but being self-employed (I have a lovely boss!) I don't know much about that area. The working matters forum should be a good source of information so have a browse through that. I have to go now but I hope you are feeling slightly better in yourself now that you have found us. We do understand what it's all like and we are always here to listen. I wish you well. DD
  • JuliaHod12
    JuliaHod12 Member Posts: 456
    edited 30. Nov -1, 00:00
    I'm overwhelmed by the responses, thank you all so much :-)

    It really does help enormously know that you are all here with the same (or similar) problems and can really understand how it is!

    Simple tasks at home take so blimmin long........feel like I am 20yrs older than I am and needing help with housework is a bit of a kick to the dignity!
    I'm just going to have to accept that I need to pace myself and use my walking stick when I need it.
    I'm feeling washed up at 52, when just a couple of years ago I'd have a go at most things!

    The work issue is something I will tackle slowly.........I do a sit down job, but that is a problem in itself as sitting for more than half an hour makes me seize up............;-)

    ho-hum........just another day in arthur's paradise..........

    ttfn all,and thanks again
    Julia 8)
  • frogmorton
    frogmorton Member Posts: 28,211
    edited 30. Nov -1, 00:00
    JuliaHod12 wrote:
    I'm overwhelmed by the responses, thank you all so much :-)

    It really does help enormously know that you are all here with the same (or similar) problems and can really understand how it is!

    The work issue is something I will tackle slowly.........I do a sit down job, but that is a problem in itself as sitting for more than half an hour makes me seize up............;-)

    Julia 8)



    It does doesn't it Julia

    using the stick will help those you love accept what is happening too...a visual reminder that you do need help.

    As for the seizing up!! Well we all understand that one too!!!

    You will get there with work.

    Love

    Toni xxx
  • speedalong
    speedalong Member Posts: 3,300
    edited 30. Nov -1, 00:00
    Hi Julia,

    unless folks have arther themselves they don't understand what it is like to be struggling and in pain all/a lot of the time.

    If sitting down is the problem at work then could you incorporate walks into you schedule? I don't know what job you do, but could you walk the long way to the photocopier or stretch your legs up and down the corridor or whatever. You could have an access to work assessment, I had a brilliant chair as a result of that - it does something called free float - which means it moves with you, allowing you to wriggle more as you sit - which helps relieve the stiffness.

    I think a lot of the tiredness is struggling to do things that others take for granted as well as the meds and interrupted sleep at night. Being nice to folk when you are in pain takes effort too.

    Speedy
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    It is amazing the difference walking sticks or crutches etc make to peoples acceptance of you being ill.. I don't need the crutches all of the time, most of it but not all, and sometimes the elbows & wrists are worse than the knees so I can't use them.. Without them I feel like people are questioning me, 'he can't possibly be that bad' etc..
    I don't really BLAME them as such as we are all guilty of making assumptions but it does annoy the Hell out of me..
    Once again, the dear, sweet Dream Daisy had got the nail on the head. The point about tiredness, nobody understands that one... I know for sure that certain family members & friends think I'm lazy, that hurts. It's not their fault I suppose, then again, if they listened when I tell them about how this disease affects me then they should know.. :roll:

    Never mind eh?

    WE understand.. :D
  • JuliaHod12
    JuliaHod12 Member Posts: 456
    edited 30. Nov -1, 00:00
    Hi guys............hope you've all had a good Sunday :-)

    Had a bad day yesterday, husband dropped me off in town, I popped to the Post Office to collect a parcel (grandson No.1 was helper for the day), then went to Chemist to collect meds, got taxi back.
    All in I'd say we were out about 45 minutes and I was wiped out for the rest of the day............pain was so biting.........:-(

    Poor grandson (he's 13) made my lunch and then I dozed on the sofa.
    Lord knows what I would have done without him!!

    I've gotta get a handle on this pacing myself...........

    Julia x
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Julia
    Have you thought of using any aid for walking yet?
    This thing called arthur is horrible......its hard to know how to pace yourself sometimes.
    Iwalked for too long yesterday even with my 4 wheeler :lol: ...about 3 hours.
    Today....I'm suffering.
    Love
    Hileena
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Pacing oneself is not easy. I managed about 45 minutes today with the Clatterator (my four-wheeled walker) and that was enough. I now know to stop when I think I can do more, it's frustrating but all too true. It's taken me about twelve years to reach this conclusion - oh the time I've wasted pushing myself too hard! I won't do it now, I just won't: in the long run I harm myself and where is the benefit of that? As a result the past three years have been better. DD
  • JuliaHod12
    JuliaHod12 Member Posts: 456
    edited 30. Nov -1, 00:00
    Hi everyone
    Just checking in......:-) hoping you are all doing ok.
    DD aka Dali Llama?, Valval, Tony, Hileena.........thanks for your support, you all have your own struggles yet take time out to be the fonts of knowledge :-)
    Been convinced to use my walking stick...........advice I am taking!
    I'm taking a more active and positive outlook and exploring all avenues instead of accepting "arthur's" terms! ;-)
    Next on the agenda is proper pain management plan with GP..........feel I have been passive for too long !
    Also looking into DLA to help with extra costs...........and Blue Badge .........nothing ventured, nothing gained and all that!

    I'm not accepting miracles, just facing it head on.

    "Onwards and Upwards"

    ttfn
    Julia

    ps Tony..............sorry I missed pocket duty today, but always happy to oblige :-)
  • JuliaHod12
    JuliaHod12 Member Posts: 456
    edited 30. Nov -1, 00:00
    not forgetting, Barbara, frogmorton, and averyone else..............many thanks :-) x
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi i have so far not used a walking stick but would have today as was so bad oh had to act as one and keep me up right bless him
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Julia
    Good for you ....taking a different attitude to arthritis. Go for it girl!!!!

    You should get a blue badge even if you dont get DLA......I'm not entitled to DLA but have a blue badge.....its brilliant.

    Love
    Hileena