New hello

GrBadger
GrBadger Member Posts: 28
edited 31. Jan 2020, 05:38 in Say Hello
Hello everyone,
I came across this website and was so pleased ( not the right word!) to hear that others are constantly tired too. I am 67, I had a 'new knee' 6 years ago, a 'new shoulder' 2 years ago and another 'new knee' last year. They are not a real replacement for my own joints by any stretch of the imagination, but have certainly reduced the pain in those joints. My hip and lower back are now painful, I have carpel tunnel syndrome in both wrists and am really fed up with myself. I dread having to have a hip replacement as I had problems after my last knee op which were very scary.
I led a very active life and had a successful career for which I am grateful, but now I struggle constantly with pain and tiredness. I have stopped committing to things because I have had to let people down so often when I have just felt too bad to leave the house. I started with panic attacks a few years ago which seemed to stem from my falling over such a lot when my knees first stated playing up. I had CBT and can manage them but I am just wondering when I get a reprieve from all this. Surely at 67 this can't be 'it'. I have become overly sensitive to pain and seem to have pain in most areas of my body. I struggle to see much that is positive, and then get very annoyed with myself for the self pity when I know there are SO many people a lot worse off. I know I should be fighting, doing more exercise, changing my diet, taking more pain killers... but there are more and more days when I just want to curl up with a hot water bottle. I don't feel like 'me' anymore - does anyone understand?
Just being able to join with people who are in a similar situation is already helpful. Thank you.

Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi GrBadger and welcome to the forum - glad you found us!

    You've summed up so well the experience of living with long term pain, I'm sure there will be many forum members who can empathise and relate to what you've said here.
    Hopefully sharing the experience with others here will be of help in itself - everyone has low days where it all seems too much and people on here are always happy to chat and share and help each other along.

    I'm including a link to the section on the Versus Arthritis website about Managing Your Symptoms, with links to pages on managing pain, emotional wellbeing, exercise etc, in case there's anything that may be of help to you:
    https://www.versusarthritis.org/about-arthritis/managing-symptoms/

    If you ever feel that it would help to talk with someone, the Versus Arthritis helpline is available Monday-Friday 9am-8pm, on 0800 5200 520.

    With best wishes,

    Ann
  • stickywicket
    stickywicket Member Posts: 26,358
    edited 30. Nov -1, 00:00
    Hi GrBadger and welcome from me too. I'm not really going to answer your post tonight because I'm dead beat. I keep promising myself a quiet day and it keeps not happening :roll: You know how it is. You just overestimate your capabilities and underestimate the effort things will take. And that's after many, many years of arthritis. I am a hopeless case :wink: Anyway, I'll be back tomorrow to give you a proper reply. For now, as my American grandson would say, I'll take a rain check. :D
  • frogmorton
    frogmorton Member Posts: 27,024
    edited 30. Nov -1, 00:00
    Hello GrBadger

    Welcome to the forum from me too. You do sound as though a lot has happened to you after a fairly 'healthy' life. I am presuming the arthritis you have is osteoarthritis?

    Having pain and living with pain really, really gets you down. It's unrelenting and demoralising, but there are things you might be able to try to see if you can improve things a bit for yourself. The CBT was a great idea and if it was a few years ago might be worth repeating.

    A fair few of us on here have gone on one of the Versus Arthritis 'managing pain' courses (can't remember what they are called now sorry) including me. This gave me a few tricks up my sleeve as well as meeting people in a similar position to myself.

    Personally I go for a walk almost every day, maybe not far and maybe not fast, but this does several things which help me; I meet people and say hello. I get those endorphins which lift my mood and I also find it reduces my level of pain. I am by far not the only person on here who exercises regularly despite having had arthritis for many years. Initially I thought it would make it worse, but it helps me. I'm not running marathons, but I am still moving.

    I am worried to hear about you starting to turn down invites because you feel you have let people down too often :? Isolation is a real possibility. Maybe you could invite people to yours instead at a time you can cope with (a rest in the day to enable this could help??).

    It might be an idea to take a look at this 'in your area' bit on the website

    https://www.versusarthritis.org/in-your-area/

    see if there's a local group you can meet up with.

    Finally of course come on in here and chat to us lot. Information is power and you'll get useful tips from people who know and understand. There are also areas where you can just talk day to day 'rubbish' to distract yourself.

    I hope this helps a little bit

    Take care

    Toni xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    So what if others are worse off than you? That is not your problem, you are - and rightly so - your main concern and I hope we can help you feel better in yourself about yourself.

    It sounds as though OA is your gorilla, I have it plus one of the auto-immune gorillas (read There's a Gorilla in my House, easily found on the web). I began my first arthritis, psoriatic, when I was 37 and then OA was diagnosed when I was 52. I also have fibromyalgia so know a fair bit about being TATT (tired all the time) because I have been for years. It's hardly surprising considering the fact that multiple joints are arthritic and damaged and physical life is an effort.

    Another helpful web article about fatigue is 'The Spoon Theory' - I am shortly going into my local town so that will use up a good few of my paltry daily ration (thank God for Father Brown, lovely afternoon TV to nod off to. :lol: ) I am 60 and living la vida loca of a much older person but that's OK, I was immediately viewed by the ignorant many as a pensioner when I was 37 because 'only old people get arthritis' - finally I am approaching my disease demographic. :lol:

    People do not realise that any form of arthritis can cause fatigue because they have no idea about the daily grind and impact of pain. For them pain is acute and can be sorted ( e.g., sprains, headaches, teeth troubles) whereas for us it is chronic and never truly goes away. Also many disabled people are not necessarily in pain, sometimes they don't understand and why would they? We get it because we've got it and many of us have had it for years. DD
  • stickywicket
    stickywicket Member Posts: 26,358
    edited 30. Nov -1, 00:00
    Hello again. Well, it's a new day and my head and body are more or less functioning as a unit again. More or less :wink:

    You know, we can all find people who are 'a lot worse off'. That doesn't help improve our own situation at all. If anything it just makes us feel guilty and guilt is a pointless emotion. If I may be honest, I think some of your difficulties are those of arthritis pure and simple but others are because you are still mourning what the arthritis has taken from you – which is a lot. Your career. Your active lifestyle. And, presumably, these were yours for many years so they are not easy to let go of. You ask 'when do I get a reprieve from all this'? Well the blunt answer is that arthritis is ours for life. But you also ask 'Surely, at 67 this can't be 'it'.? No. It certainly doesn't have to be.

    I think you know some of the answers - ' doing more exercise, changing my diet, taking more pain killers'. I'd say 'yes', 'yes' and 'no' to those. I'm not a big believer in so-called 'painkillers' but I do believe strongly in exercise. I don't know where I'd be without it.

    I totally agree with frogmorton that saying no to invitations, while it has to be done sometimes, should not become a habit. We need company and stimulation. We don't 'let people down' if we are upfront in advance, telling them that, on the day, it might not be possible. Are you 'a joiner'? Are there groups in your area that you might be interested in checking out? (Your local library – if you still have one :roll: – or newspaper might help. Round here, groups advertise in the local garden centre, hotel, health centre.)

    I don't think it's just arthritis that's stopping you. I think it's motivation. But you have made a start by posting here. Why not make a list of, say, ten things you've always wanted to do. Next, cross out the bungee jumping and free fall parachuting :lol: Let's stick with the art of the possible. As examples, when I couldn't play the piano any more I did an OU course in composition and loved it. When walking became more difficult I took up riding for the disabled. I used to drive there each week in a mixture of anticipation and terror then drive back with a terrific sense of achievement.

    That sense of achievement is so important. We do need to mourn what is lost but not permanently. At some point we have to look forward to what is still attracting us. There is so much. And the great thing is that by focusing less on the pain we feel it less. That's a fact.

    I had to give up the RDA after my knee revision. (I have had three TKRs and two THRs) My surgeon got a bit antsy about his handiwork if I fell off. But I still walk as much as I can, which is very little :oops: , and I do exercises every other day. I love the 'every OTHER day' thing. I love my days off but then look forward to having a good go at them because of the rest days.

    I could go on – and do, frequently :lol: – but I'll only bore you. Please stick with us. It's good to talk to people who don't require explanations. Join in anywhere. Threads you might be interested in are:
    https://arthritiscareforum.org.uk/viewtopic.php?f=8&t=49318
    https://arthritiscareforum.org.uk/viewtopic.php?f=8&t=23619
    https://arthritiscareforum.org.uk/viewtopic.php?f=12&t=19686

    The cafe (thread) is always open and welcoming.
  • GrBadger
    GrBadger Member Posts: 28
    edited 30. Nov -1, 00:00
    Dearest Stickywicket, Frogmorton and Dream daisy, that you have found the time to reply to what was a series of moans is so uplifting. Thank you so much.
    I will try to do a little walk, I love the idea of every OTHER day! As I read in the Charlie Mackesy book my son gave me for Christmas: 'Sometimes just getting up and carrying on is brave and magnificent'! And yes I was very struck by the suggestion that i am mourning for a life I can't have any more. Life is a matter of constantly changing and adapting, I know that in my head, my heart doesn't always listen. I am not really a joiner of clubs. Long story I won't bore you with. But I joined WI: I live in a village and didn't appreciate the gossiping aspect, then when we were all asked to make a fairy out of a peg, I hung up my membership. I have been a member of the local church for about 10 years, member of PCC, lead on Outreach Mission, Children and Families, Flowers in church, but it seems the more I do the more i am asked to do. I am going to say no to everything that doesn't make me happy - for 1 month and if the sky doesn't fall in I'll extend it to 3!
    Been to the hospital this morning for annual check on my shoulder and the consultant said to get my GP to refer me to a rheumatologist as although I understand this to be OA it could be a type off Inflammatory arthritis. The thought of more hospital appointments is not great, so I will leave it a while. He also suggested taking Vit D ( in a spray) as the constant fatigue might be related to that. Sounds like a good thing to try.
    I have rattled on enough. With a little help from my new friends I am going to begin by taking baby steps towards a fresh attitude to this b****** illness. And try to stop feeling diminished by it. Thank you so much x
  • GrBadger
    GrBadger Member Posts: 28
    edited 30. Nov -1, 00:00
    Thank you Stickywicket for suggesting those threads. The thread about letting going of favourite shoes made me smile - mostly because I have never spoken to anyone about all this before and suddenly there are so many others who keep looking at the heeled shoes in their wardrobe thinking 'one day, I'll get back into them'. I remember the day I bought a pair of flat shoes, I wore stilettos constantly - being 5'3" I needed them! I then wore block heels as a compromise and they got lower and lower until the dreaded flats. I suppose trainers will be next - I 've never worn trainers in my life! Moving to almost always wearing trousers after years of mini skirts then knee length or midi dresses, because my ankles and knees are so swollen I feel I have to hide them from public view was another milestone. To know other people are thinking and doing just the same as me is unbelievably helpful.
    It is all character building I suppose. I used to rely on being more or less acceptably attractive, having bundles of energy, and able to sail in and 'rescue' anyone who was struggling. I am now the one who is struggling and have to dig out resources in myself - that I are well hidden. My biggest discovery today is that I am actually OK!
    Love to all of you amazing people out there who support each
    other. x x x I am going to read your very helpful posts again
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Having burned the candle at one end I am now in recovery. :wink: There is more I want to say but will confine myself to this.

    I suspect the majority of rheumatology units in the country are understaffed and oversubscribed with patients. I completely understand that the thought of more appointments is far from lovely but, as one can expect an average wait of between three and six months for a first rheumatology appointment, there is nothing to be gained or lost in getting that ball rolling now.

    I was always a candidate for my auto-immune arthritis as I was born with eczema and developed asthma aged seven, both auto-immune inflammatory conditions. They came from Ma's side of the family (she was untroubled by the nonsense throughout her life) and Pa kindly donated psoriasis which he barely had (and I don't have much either, preferring the arthritis version: not).

    Auto-immune arthritis is a very different beast to osteo and I cannot overstress how necessary it is to, hopefully, rule it out as a possibility. DD
  • frogmorton
    frogmorton Member Posts: 27,024
    edited 30. Nov -1, 00:00
    Oh my goodness!

    This is/was me! "....It is all character building I suppose. I used to rely on being more or less acceptably attractive, having bundles of energy, and able to sail in and 'rescue' anyone who was struggling.."

    I also live in a small village where the more you do the more you are asked to do. Luckily for me WI clashes perfectly with choir practise as I think pegs is where I would have to draw the line :lol:

    Time methinks for you to put number 1 FIRMLY first. Start with your little walk. I'll be out there too Dreamdaisy probably as well and Stickywicket on her excersisy thingy whatsit. All of us feeling a sense of achievement for it too :)

    Come on in and join the main forums wherever you like you will be very welcome including the café on chit chat. We are a little sad at the moment as we very recently lost one of our members unexpectedly, but we are very welcoming.

    Love

    Toni xx
  • stickywicket
    stickywicket Member Posts: 26,358
    edited 30. Nov -1, 00:00
    GrBadger wrote:
    My biggest discovery today is that I am actually OK!


    Rubbish! You are far more than that :D:D

    Shoes were never an issue for me as I've been in surgical ones since my '20s and, before that, trainers for some years. Trainers are actually good. They support the feet well and that can help to prevent problems higher up.

    Changes, in dress as in other things, are inevitable with arthritis. I find the trick is to change what must be changed, and accept the limitations of what can't. It saves time, effort and misery. But it's amazing how much can be changed to make things still possible.

    You say you used to “ able to sail in and 'rescue' anyone who was struggling”. I'm sure you're still that person. Leopards, spots etc :wink: And people need 'saving' in lots of different ways. You may have to leave some energy-demanding 'rescues' to others but the world will never be short of people needing even just a kind word.

    I now have frogmorton's lovely image of me on my exercise 'horse' watching a screen where she, you and DD are all ploughing on, not necessarily energetically but determinedly, maybe through a woodland glade (though I think DD would prefer a shopping centre :lol: ).

    Your story of the WI brought back lovely memories of Calendar Girls. I like your resolution of saying 'no' for a month. It's true that, especially in small communities, everything can often fall on a few willing shoulders – even arthritic ones. We tread a fine line between being arthritis bores and being honest about our limitations. I am part of our church's somewhat grandly named 'communications team' (I do the weekly service sheets and e-notices) but I'm happy to tell anyone that I hang up my computer at 6pm.

    I'm pleased you've been referred to a rheumatologist.Although most of us who have 'done the double' have done it because, for one reason or another, our inflammatory arthritis was not treated aggressively enough quickly enough, just occasionally we get people on here who have had OA for some years before developing RA or somesuch. So, I'm with frog(morton). Go for it now. It'll take ages and, if you have an inflammatory form, the sooner you're on medication the better.

    Right, I'm off. I've wittered on enough. Work to be done. Unfortunately :roll:
  • GrBadger
    GrBadger Member Posts: 28
    edited 30. Nov -1, 00:00
    Just quickly because I need to do a 'big' shop - does that count as my little walk for today, hanging on to the trolley and giving up before the last few aisles - didn't need alcohol and toilet roll anyway.
    I have said my first no. I do the flower rota for church. We lost a few people from the rota last year either for health reasons, or finding something better to do. I hadn't meant to but I had one person down twice - we only do a pedestal once a year individually, then all join to do more at the festivals - she has bolted straight back saying it must be a mistake, she could do one in July, but would be at their house in France in October. I would usually say 'Its ok I'll do it'. Instead I asked HER to find someone to cover the October date.
    Awaiting the fall out but YEY for me, and y'know what I wouldn't have done it without the encouragement I am getting from you guys. x x x x
  • stickywicket
    stickywicket Member Posts: 26,358
    edited 30. Nov -1, 00:00
    Well done you :D It'll get easier.

    As for shopping - just remember that one person's quick shop is another's full workout. Count effort not result. Mind you, if your fridge is now full, count result too :D

    You've had a good day, haven't you? And now......

    :animal_busy:
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I've reread the thread and wonder if you have used or do use walking aids; if not why not? I wouldn't be without my seated rollators (I have three, a cheapie, a moderately priced and one called James who was the cost of an old banger) it's essential in town as it means I can walk further, rest when needed, queue with ease and transport shopping: it also serves as a warning to others that I am not as able or nimble despite my 'youth'. The cheapie is in my car, the moderate in my husband's and James lives in the garage: he is my cross-country-festival-going roly.

    I have always been more than my health and always will be. My life has always been curtailed in some ways by health issues but that has not stopped me learning, working, being a friend, a wife, part of a large, wider family. It has always stopped me doing what I wanted, eating what I fancied or from fully joining in the activity of others but so what? Life's short straws exist and someone will pull them. Life's long straws, however, are not necessarily permanent.

    The most responsible decision I have made so far in life was not to breed in order to completely eliminate the risk of this crud being passed on to yet another unsuspecting generation; I am thankful that by the time I was sixteen genetics was revealing its ghastly secrets which made the choice a no-brainer. I cannot comprehend how I would feel or cope if I woke up tomorrow and was in perfect health but that is something I will never have to face. You do not miss what you never had but, oh boy, surely you must when it goes. It must be so hard to become repeatedly compromised when you have known a life free from physical complications, when energy was tangible, sleep refreshing. This is far harder for you than it has ever been for me. DD
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I forgot to say 'Well done!' on saying no. There is a difference between a negative no and a positive one - sometimes the difference is so subtle we don't cannot tell which one we have said - but that was, for sure, a positive no because not only did you refuse but you passed over the responsibility to her to solve the problem. That, girl, is class. You're beginning to get the hang of this arthritis malarkey. DD
  • GrBadger
    GrBadger Member Posts: 28
    edited 30. Nov -1, 00:00
    When did you get so wise? you sound like a truly lovely person.
    I use a walking stick if I'm out on my own, which isn't very often - something I need to work on - and link my husband at all other times. When I had to use my stick or crutches all the time before I had my TKRs I quite enjoyed that most people gave me a wide berth! Now a stick gives me confidence that I won't fall over. I never walk far enough to need anything else. I am limiting myself I know.
    The woman i said my first 'No' to came right back saying she couldn't find anyone else as she didn't know anyone and anyway all the other members of the team should be asked to do another week. So I forwarded the whole thread to everyone and within an hour a really good friend of mine had offered. The woman came back and said "I'm glad you resolved it". Some people just don't get the being human thing. Not worth worrying about. So not 100% success but I will get better with practise!

    I can't imagine how it felt to decide against having children, although one of my sisters made that decision for different reasons and has a fantastic life with no regrets. She just says - this is the way my life has gone, which seems to be what you are saying.
    In some ways, pain and horrid tiredness aside, I should be thinking this is an opportunity to redesign myself and teach people to treat me how I want to be treated rather than running behind trying to please everyone. A chance to be a development of myself, not a poor imitation of my previous self. I am scared deep down, that I will get worse and not be able to look after myself etc etc., Thats what the hanging on to shoes we will never be able to wear is about I suppose. But as my little sister also says "It's not this day" from Aragorn's speech.

    You are an inspiration Dream Daisy and I am glad I have met you. x
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Wise? Me? I can hear my late Ma roaring with laughter.

    I am not sure if one can aquire wisdom when life is easy. It's the challenges that one either rises to or runs away from that shape, mould and set one's life philosophy. I count myself lucky that I started arthritis when my thinking was still reasonably plastic, enabling me to accept with reasonably good grace that aids were helpful and enabling, not a sign of weakness and that everyone would stare at me. I should be that important! :lol: Ma taught me well too, between the ages of seven and eleven, come spring and summer, she would wheel me to school on her bicycle because I was too weak to walk or ride due to the asthma. I was not allowed to give up or give in. Then inhalers were invented and life changed, breathing became easier because plants, food andmother people's felines and canines could no longer try to kill me.

    I am blessed with a generally sunny disposition and am fully aware that being a grouch gets me nowhere, is not nice for those around me and is ultimately self-defeating. Of course things would be more pleasant if I was not diseased but I am, I always will be so just get on with it is my approach. I manage things with my arthritis ABC, viz. adapt, believe and compromise, I have developed new interests and hobbies, more is better in my life than worse but sometimes that can be hard to see. Today is one of those days but it will pass, all things do.

    Dusk is advancing and, set by set, various battery lights are coming on all round the house, little sparks of light in gloomy corners. I love this time of day. DD
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, how are things? Are you trying the ABC and if so, is it helping? As I often say to my husband 'Onwards and sideways!' DD
  • GrBadger
    GrBadger Member Posts: 28
    edited 30. Nov -1, 00:00
    Hello friends. I've been slow in saying thank you for your last posts, sorry.
    The little walks haven't materialised. No excuses, just laziness. I haven't been to the GP to ask for a referral to find out if I have Inflammatory as well as O A. Can't bring myself to just yet, I suspect that since I am putting it off it cannot be that bad....
    More positively, I continue to say 'No, thank you" and am trying to teach people not to expect me to carry on doing stuff just because they can't be bothered. And, I am going to an exercise class tomorrow. It is for oldies, and the instructor said they have others with replacement knees and hips and I can take it at my own pace. But apparently it is all done to 50s and 60s music and everyone sings along! I really hope I like it. I never join groups. I wasn't allowed to when I was a child, I was one of those 50s oldest girls in a big family who had housework and the rest of the family to look after, leaving no time for friends. I only ever learned how to lead, not how to join in. So maybe, just maybe, this will be something I can learn, because of my arthritis!
    I hope you are all ok, you deserve to be. x
  • stickywicket
    stickywicket Member Posts: 26,358
    edited 30. Nov -1, 00:00
    Lovely to see you again :D You seem to have made a great deal of progress so congratulate yourself on that and put the 'non-progress' bits to one side for now. I hope the exercise classes go well. It takes courage to begin soomething like that when one doesn't feel 'the type'. Who knows what it might lead to? Even if you end up feeling it's not for you it might open up other possibilities. Keep going :D

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