Anyone else fed up to the back teeth?

dreamdaisy
dreamdaisy Member Posts: 31,520
edited 5. Sep 2019, 06:27 in Living with arthritis
I know the reason for my discontent - it's very gusty and blustery, stuff is being blown down, along, around and I don't think I have ever seen the large American oak that overlooks our garden being buffeted this hard in the five years we have lived here. My mood is affected thanks to the moulds and spores being blown about, I am short-tempered, grumpy, impatient, snappy, all things I am usually not. Arthritis-wise both knees feel as though they are being injected with cavity wall insulation, everytime I move I can feel them filling and numbing, with a core of burning heat. Dem bones, dem bones, dem ******* bones. :x

I know this will not last but oddly it is getting tougher to cope with as I get older. I remember these kinds of days when I was a child, fighting for every breath and scratching myself raw. In theory, thanks to the medications and maturity, this should be easier, but it's being just as hard in a different way. :cry:

Pull yourself together, Daisy, it is what it is and for today it's a big pig. Tomorrow it may well be a smaller pig and by Monday a mere piglet. DD
Have you got the despatches? No, I always walk like this. Eddie Braben

Comments

  • stellabean
    stellabean Member Posts: 307
    edited 30. Nov -1, 00:00
    Yep I think it is down to the low light levels it is so like winter but too hot, the mornings are darker and the nights are drawing in yet it is only August. It feels as if it never going to stop raining most of my garden has been flattened by the wind and rain.
    My supposed good knee has decided to start kicking off just to level things off. They both feel hot on the inside but feel normal to the touch it is weird but then I am getting used to weird with my body but when you tell the medics how things feel they look at you as if you are nuts.
    I hope you get your piglet DD surely the weather has to improve soon and not just wait until the kids are back at school.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    I think we all get less resilient as we get older. We have already 'resilled' so much :wink: and sometimes the pile just gets too high.

    I found I needed my blue inhaler this morning. For roughly 360 days per year I get by with just the steroid one day and night but the other 5 days always take me by surprise....and a little concern......and a smattering of outrage.

    I actually like wind, though. I've always attributed this to my being a March hare but, as I know you are too, maybe it's just that I love its wildness and unpredicatability. I used to love being wild and unpredictable in the days when my joints were acquiescent :lol:

    I hope you have better weather and breathing today.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Thank you both for your replies, I am pleased to report that the pig has reduced in size and may well regress to babyhood come the morrow. My mood has always reacted badly to low pressure weather and always will but the winds yesterday were some of the worst here in years. I have things to do tomorrow whilst Mr DD is otherwise engaged and hopefully I will summon the necessary enthusiasm and energy to accomplish them. If not, all being well there will be Tuesday . . . . and Wednesday . . . .. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Airwave!
    Airwave! Member Posts: 2,458
    edited 30. Nov -1, 00:00
    Ahhhhhh life as usual in the DD house then! I find that our house has accumulated so much latent heat that it's still hot indoors despite having Windows and doors open during the low pressure we are having.

    Grumpiness seems to go with increasing age or is it just lack of patience with the world?
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Yes, up to and including back teeth, which are joining in the general misbehave fest.
    Quite apart from the difficult weather, which has had a lot to do with the problems, this year so far has been 'notable' for things I haven't been able to do/had to cancel due to health issues. Work days have been increasingly difficult to get through but are worth it for the company of my colleagues, the distraction potential, and the occasional real feel good factor from having made a positive difference.
    I did finally manage to get to see my son and his family for a couple of days in time for grandson's 2nd birthday, but golly the travelling(5 hours bus, train, underground each way), the constant 'busyness'(no guest room to escape to) on top of the pain and fatigue took some recovering from.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Daffy, well done on all counts. Yes, we all advocate distraction but it can sometimes take a huge physical and mental effort. As for the visit – I'm sure it was worthwhile. As you'll know, we visit our son and now 10yr old grandson in LA each year but, like yours, the journey is demanding and, until this year, the sleeping arrangements were far from ideal. But we keep doing it because the good vastly outweighs the bad, doesn't it?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Thank you Sticky. Yes I was glad I managed to visit; for various reasons it had been 9 months since my last trip down and grandson was very much a toddler now not a baby.
    It did though highlight that things for me have changed very much quicker than I had bargained for and that I'll need to rethink what I do in the next few years; my original 5 year and 10 year plans roughed out when I turned 60 are no longer fit for purpose - bit like me!
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    :lol: Now that I will not accept.

    It's true, we have to keep adapting and changing because our bodies will whether we like it or not. This is probably an excellent exercise for our, also waning, mental faculties. Not 'I can't' but 'how can I?' I have discovered that the changes usually cost money, not to mention effort but they do allow us to work out, with enviable precision, our priorities in life.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh daffy, that journey sounds like a nightmare, I know I could not manage it and have no idea how you did. We think we know where we are going (arthritis notwithstanding) then it ups and surprises us by taking more away more quickly than usual. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Still fed up. Six months now and counting. If I felt there was a way I could improve things I would be doing it but I know the culprit is the disease, I am doing what I can medically and otherwise to deal with it and have come to one conclusion.

    It's the forum.

    I love it, it is a valuable resource but it is really getting me down. 'I've been diagnosed with OA/RA/PsA etc but want to carry on running marathons / don't want to take the meds / does turmeric work? / why can't I do what I want anymore? / I'm in pain.' Day after day after day. What are people expecting us to say? Yup, you can do all that / no need to take the meds because the disease won't do you any harm / turmeric is a miracle and thank you because we'd never heard of it / nothing needs to change, keep on running / yes, it does hurt, doesn't it? I completely understand that this malarkey is new to people, hence the tedious repetition of the same old same old but trying to nicely tell people what they don't want to hear is very draining. I do, genuinely, feel for those who are new to it all but, for the time being, I have had enough.

    Tarah for a bit. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • crinkly1
    crinkly1 Member Posts: 156
    edited 30. Nov -1, 00:00
    Hello good forum friend,

    I couldn't agree more that there are times for giving yourself a break from what you see as a 'duty'. You spend so much time giving of yourself to others and going over your own story and coping strategies that it's not surprising it has become draining.

    You've posted so much of your experience and advice that it is easily accessible to anyone new. Maybe, even, your very rapid responses to almost every new post are causing others to think they have nothing to add so that they become part of the 'problem' you perceive as the disinterest of other forum members. There's no way of knowing how many members read your posts eg I only log in when I feel I have something of value to say - rest of the time I read most forums daily as a 'guest'.
    And I might have posted more if I didn't feel it could undermine your 'authority'.

    You've done an amazing job for a very long time and well deserve a Sabbatical. Make the most of it and come back when your batteries are recharged and perhaps at a less demanding pace.

    Sometimes we have to actually stop doing a task before someone else recognises an opportunity to contribute.

    It's so easy to become part of the vicious cycle that adds to your own depression so it's good to step back for a time and focus on the positives of daily life. If you miss these forums too much maybe the escapism of Val's café will give you a chance to exercise your creative writing juices and put a smile on your face!
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Enjoy your well-earned sabbatical DD.
    It is perhaps the downside of a TV ad campaign that there will be a considerable increase in approaches to the forum from people wanting answers.
    It was suggested a while ago that there needs perhaps to be some sort of quick search/first stop/FAQ arrangement to which new users could be directed before diving in to questions to the forum.
    I haven't looked at the new VA website - does that have enough easily found information that might filter some of the repeat questions?
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    DD, if you're reading this (and I hope you're well away from here) I think you're spot on and doing exactly the right thing. Most people in the caring professions, and the caring amateurs, suffer burn-out from time to time and have to take a break. You have cogently listed many of the reasons for forum burn-out. We answer the same questions all the time and it can be hard to summon up the sympathy and empathy day after day especially as there is no face-to-face contact.

    Perhaps this is my imagination but I also feel that, in the last couple of years, things have changed. People often came on here worried and anxious about the future but now there's quite a lot of anger and resentment too. Perhaps this is due to many external factors – the difficulty of getting doctors' appointments, the long waits for surgery, the unfairness and anxiety caused by PIP. I do think also that, increasingly, many people have a sense of entitlement to the life they currently have – or had before arthritis – so they arrive, not wanting to know how to live with arthritis (which is our purpose) but how to live without it which is not in our remit, nor in our power to explain and therefore extremely frustrating for us or, indeed, anyone as it involves being constantly negative.

    I would love to believe that, as Crinkly has suggested, others might take up the slack caused by your absence but I'm not convinced. I certainly don't have the free hours in the day or the mental and physical energy to do more myself.

    Daffy – 'the new VA website'? Is there one? I thought this was it.

    Take all the time you need, DD and, if that is forever, then so be it. Your own health must be your prime concern. ((((( )))))
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Stickywicket this is the Versus Arthritis Website:

    https://www.versusarthritis.org/

    Bottom right side there are 3 symbols: people (the online community) then a phone (the helpline number)
    and finally a speech bubble - a virtual assistant where you can ask questions

    There is also (next to the red 'donate button') a search sign.

    Anyone can ask the virtual assistant a question of course and in answer to Daffy2's query - I often locate helpful information for new members from the website, usually via the 'search' sign.

    I hope this helps a little?

    Ellen
  • Airwave!
    Airwave! Member Posts: 2,458
    edited 30. Nov -1, 00:00
    I know what DD means, answering the same questions from people who have different problems is tedious and can be draining.

    I did suggest a different way of structuring the answers but nothing seems to come of it. Newbies don't seem to want to search but to have readily available custom answers for themselves. I used to stick to just Chit Chat and eventually moved to LWA in a limited way.

    I now find I just don't come on here so regularly now and bypass many topics, you can usually sniff out the ones who write down their recently aquired diagnosis in full medical terms. It is hard to tell them it's pain and discomfort like the rest of us.
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Thanks for that, Ellen.

    I am now, as we Yorkies say, fair flummoxed :lol: So, there are two sites. Both say VERSUS ARTHRITIS at the top. Both have similar, though not identical, information and the VA online community tab leads to this site which looks similar but has the URL of Arthritis Care.

    I've just had what I personally, humbly :wink: feel is a brilliant thought. Whenever the key words eg 'pregnancy', 'diet', 'methotrexate' etc came up they'd be highlighted so that the new poster could click on and be taken instantly to either info on that topic or to the relevant bit of the search engine or both. Then come back to us if they had further questions.

    DD, I hope you're not peeking :wink: Get back to that cuppa and a jigsaw :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi SW
    I like your thinking about the links in posts, watch this space :wink: You are right it can be confusing having the Arthritis Care legacy website and the new Versus Arthritis website.

    Anyway, once all of the information has been moved over to the new site and our amazing digital team have twiddled with all the techie bits the Arthritis Care website will also be closed down and we will have just the one big super-duper site. This will be quite soon.

    As we all know having the correct information is so helpful when it comes to managing our arthritis but also hearing from other people who both understand or have had a similar experiece is what makes the forums such a magical place to be. There is nothing better than knowing you are understood, people have been through something you are dreading and are coping well or just having someone to rant to who won't judge you. This is the power of our wonderful online community.

    Best Wishes
    Sharon