Struggling.

Hodgy
Hodgy Member Posts: 37
edited 1. Mar 2019, 17:04 in Living with arthritis
Hi. I'm really struggling. I gave up marathon training and with it the chance to run the London Marathon. I gave up trying to run and listened to what everyone told me- that I need to rest. I haven't ran in 8 days. The pain in my knees and foot are just as painful as when I was trying to run. I miss running very, very much- it is really getting me down. I'm struggling to cope with the pains day after day, never letting up. They are my last thoughts before I sleep, they wake me in the night and they greet me in the morning. I feel like I'm sinking. I'm scared I will never know what it is like to be pain free again and I'm so scared I may never run again. I have spent a fortune of CBD oil taking it now for over a month with absolutely no effect. I have just started taking turmeric capsules. I can't take ibuprofen type drugs because of my stomach. I don't want to mask anything in pain killers as I feel I need to know exactly what pain I am in. Please, I would be so grateful for any advice- I hate to say I'm really not coping very well. Thanks for any help X
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Comments

  • frogmorton
    frogmorton Member Posts: 26,672
    edited 30. Nov -1, 00:00
    Oh Hodgy I am so sorry :(

    You really are having a rough time, but coincidentally my sister is here with me (the one who went from running to cycling??), and so I read your post to her.

    She said it took her the best part of a year for her joints to settle down after her epic runs. Maybe 8 days might be a bit optimistic :? BUT we are all different so it might be sooner for you.

    I don't know if it would help to talk to a real life person? If you think it would you could ring the helpline number? It's at the top of the page. I rang them once and bawled.....and bawled and they waited and waited. It helped ((()))

    Take care


    Toni xx
    Love

    Toni xxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    You are very new to this, it's a deep, raw and bleeding wound. You are finding out the hard way that there is nothing to be done to truly help and people have to find that out for themselves. We are easy targets for the unkind, the ruthless, the charlatans and snake-oil purveyors: in my early days I did my bit with diet (as it used to affect the asthma and eczema) acupuncture and homeopathy, what a waste of my time and my husband's money as the arthritis bus rolled on regardless.

    OA is very common and people think little of it for that reason. They see it as being something for old people because their grandparents had it or their parents started it as they aged. We live in a time that worships the young, the fit and the healthy - to have arthritis means you are none of those. I have lost count of the number of times, when out and about using my rollator, I have had people say to me 'Oh, we want to get Gran one of those but she won't have it.'. Gran can be anywhere between 60 and 95, I had my first one aged 48. To me it made sense but as you get older your thinking becomes far less plastic: the longer you've done without something because you didn't need it the harder it is to accept the fact that you do. (A rollator is a walker with wheels and in my case a seat too, I have three for different uses including James, my cross-country model used at Latitude.)

    I can't say any wise words because acceptance is a very individual thing, I have never known good health, severe eczema and asthma sidelined me from the usual kind of childhood so I am used to watching others do what I cannot. I know that the changes I have made in using walking aids from when I did have made a big difference to my overall fitness (that will have you in stitches and rightly so!) but for you this setback must be a huge shock and one I can only liken to my own diagnosis of OA: I was under the impression that having the auto-immune meant that my arthritis experience was complete.

    The pain will stand out more as you are not affected in too many places, my experience is/was that as more became affected by one, the other or both, being pain-free finally became a thing of the past and I no longer hanker after it: in fact the thought terrifies me but I am twenty-plus years ahead of you and that makes a big difference.

    Whatever you do, try not to go down the route of 'there are others worse off then me' and ignore those who tell you that because they don't know what they're on about. This is YOUR life, YOUR shock, YOUR setback and the fact that others have been there or might be 'worse off' (whatever that is) is of no relevance. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Hodgy
    Hodgy Member Posts: 37
    edited 30. Nov -1, 00:00
    Thank you Toni, I've been totally trying to hold back the tears because I'm scared they won't stop. Your sister is very brave to face it all as she did, when I feel like I'm falling apart- quite literally. I did take your advice though. My Mum gave me some money at Christmas to get something special. I didn't know or want anything special at the time and I didn't want to waste it. So the money just sat there but yesterday I had this idea- to get a better bike. So I asked my Mum would she mind and she was just so happy because she said I just want you to be happy again. So I have ordered a hybrid bike- not quite a road bike like your sisters but not a cumbersome heavy old mountain bike which I have. This new bike is a cross between being practical ie. cycling to the shops- it has a basket! But also light weight enough to take the basket off and maybe enjoy some easier cycling. I'm looking forward to getting it- although if I'm totally honest my heart and legs just yearn to run. Thank you to you and your sister for all of your lovely support. I may well end up calling the help line Thank you X
  • Hodgy
    Hodgy Member Posts: 37
    edited 30. Nov -1, 00:00
    DD, Thank you so much for getting back to me, you are a very brave lady to cope how you do. I totally understand- that this is my journey isn't it? Something I have to just go through. I think I'm just surprised at how much my head and heart- especially my heart are refusing to accept any of this. It's like I understand my day to day struggle with the pain but my heart is forever saying don't give up. So at the end of each day I'm always hopeful that tomorrow will be easier or better, only to wake up disappointed. I suppose I set myself up for failure but i don't know how to just accept it. Was there a point when you just realised? Sorry this is so new to me- I'm not doing very well with it am I! Thank you for any help X
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Hodgy, so very sorry that you are struggling it really does take a while to get your head around the pain and limitations of arthritis. None of us here are experts, but we are all working towards dealing with changing circumstances. When we have to walk away from something we loved and cope with now it's almost like a kind of bereavement, and that coming to terms sometimes feels totally overwhelming. I wonder whether you've chatted with your GP about how sad and frustrated you feel, sometimes we just have to talk it through, put it into words. I understand being reluctant to take pain ret, but it really can make life more liveable, it's n o t a sign of weakness or giving in, it's about trying to take back some control and make life more fulfilling.

    I wonder if you can swim, it's a great form of exercise and the buoyancy of the water supports sore joints, as a bonus it will help strengthen the muscles that support your sore joints. Also being outside in the fresh air is particularly beneficial to our health and well being so maybe there's a gentler form of outdoor exercise you could do? When I'm out in the local park walking our little dog I often see folks doing Nordic walking with poles, I've heard that's a good form of exercise and perhaps gentler on the knees?

    Do keep talking, it helps to clarify your own thoughts, and maybe in the process will help others on here who are also in a rough place. I hope your new bike is a success and you get lots of enjoyment from it.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Brief answer as I have a family funeral tomorrow, the second in six months,: both were lynchpins of the family and I am not myself.

    I realised aged eight that everyone else was having - and would continue to have - a better life than me when it came to health matters. From reading all the classic children's books I understood the theory of childhood and knew I would never live it - in fact on three occasions over the summers of 1968-69 I came very close to stopping the whole experiment altogether thanks to massive asthma attacks: I remember passing out through lack of oxygen and, on coming round in hospital, knowing it could all happen again. One occasion was due to my mum having a lovely display of irises in the fireplace - the fact she inadvertently tried to kill me became a family joke. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Airwave!
    Airwave! Member Posts: 2,427
    edited 30. Nov -1, 00:00
    I have a new electric bike, they have come a long way since the girst ones. Try one for non-weight bearing exercise.

    Just remember pain dies not last, there us relief inbetween bouts.
  • Hodgy
    Hodgy Member Posts: 37
    edited 30. Nov -1, 00:00
    DD I hope you will get through tomorrow. My goodness you are a pretty amazing lady. I'm not sure I could have found your strength and fortitude to fight especially at such a young age. that is a pretty amazing strength of character. Take care tomorrow and thank you, really thank you for all of your words- it's like looking at my life from a different person- it helps X
  • Hodgy
    Hodgy Member Posts: 37
    edited 30. Nov -1, 00:00
    DibDab thank you for reading and replying. I am finding so much support from you guys on here. Sometimes I get a little scared to post. I think because I'm new and this is all so new to me and you guys all seem so together, so in control of it all. You have your heads on right- as my Mum would say and you all know your stuff. I'm learning and struggling and often falling- sometimes quite literally when my knee gives way. I fell up the stairs the other day- my hands broke my fall and i hurt my wrist as a result. I was shocked by it, then I thought I was lucky as at least my knee gave way on the way up- so I fell forward and not down. It is incidents like this when I realise stopping running won't rectify this problem and yet I still haven't accepted that I won't run again. I'm not very good at swimming I'm hoping I will love my new bike enough to take me away from this just for a little while. Thank you ever so much it does feel good to talk I feel like I've bottled this inside for forever and it's only been 8 days. Thank you for your kind support and helping me. X
  • Hodgy
    Hodgy Member Posts: 37
    edited 30. Nov -1, 00:00
    Air wave thank you for replying and for your advice. I'm going to give my new bike a go. If I can't do that then I will consider an electric bike- but the thing is I kind of love the feeling of total freedom- of my own body propelling me a long. Even though I guess it's not doing that now. The pain is agony at times- it makes me want to cry, but I try really hard not to. There is nothing to be gained in self pity. But the loss of my running does break my heart. I'm trying not to think too much about that for now. Thank you for your kind reply, I hope you love getting out on your electric bike especially as Spring is just around the corner. X
  • nanny2507
    nanny2507 Member Posts: 27
    edited 30. Nov -1, 00:00
    DD. what lovely words, (your first reply) you are very wise in the realms of OA PSA. we could all do with a DD. I sure as h*LL could x I hope the funeral wasnt too awful for you xx
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Believe me Hodgy being in control is little more than an illusion, at least in my case :lol: . I have rheumatoid arthritis and a lung condition called bronchiectasis, along with a fair chunk of osteoarthritis and asthma. The combination of RA and chest problems drove me out of a much loved teaching career at 55, and I shed more than a few tears. Some weeks I want to do little more than read a good book or bake a cake, so I do!! I've slowly learned to pace myself, and discovered joys in making crocheted blankets which I give away...it's grand to give some one else something lovely. I find even a short stroll with the dog lifts me up on dark days....I love to watch the seasonal changes and feel the breeze on my face.....little pleasures that break into gloom. I've slowly built up my walks from around 15 minutes to a steady hour, the dog enjoys it, and I'm aiming at maybe an hour and a half by next autumn......little, manageable steps that help me feel better about myself.

    Maybe you could slowly improve your swimming, or use the resistance of the water to gently strengthen muscles with support.....walking lengths (or widths in the shallower end) and building up to slow running in the water. Some local hospitals have hydrotherapy pools with warm water and physio therapy, I wonder if your GP could refer you, it may help with your emotional well being? Often the first step is asking for help, most of us hate doing it but find that others are happy to help. I was chatting to my son last night, he's a doctor, and he made the point that physicians are concerned with the whole person, not just the obvious problems, why not try to find the courage to chat with your GP and see if they can help, it really isn't a sign of weakness, it's a marker or courage in facing the challenges. You clearly are brave and strong and determined, and things will improve.
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    It will get easier though it almost certainly will not feel like that right now.

    I started with RA at 15. I could be a stroppy teenager but I loved playing the piano. Not well but it was my refuge. I belted things out with far more passion than talent but it worked for me. Then arthritis struck. In my hands at first. I persevered as long as I could but it really hurt – physically, yes, but the main hurt was emotional. I stretched my fingers to what should have been the right notes – what HAD been the right notes for ages – but, because they no longer stretched that far, it was the wrong notes that sounded.

    I gave it up. More or less permanently. At 15 there is usually something new on the horizon and I was discovering Spanish and John McD and other interests. My love of music stayed though and, many years later, when my younger son was doing music A-level, I got a hankering to try composition. I did one O.U. Module and loved it. Not enough to take it further. I didn't have the talent for that. But it was fulfilling.

    I can't remember when I decided that, every time I had to give up something I loved because of the arthritis I would take up something else that seemed interesting. And challenging. I've done that ever since and always found it so much easier to give something up if something fascinating beckoned. Especially if I wasn't sure I'd be capable of it.

    This is all very, very new to you and, as with any other 'death' your running must be mourned. We can't just happily let go of activities which we love without a backward glance. But you'll have the satisfaction of knowing you've done your best to hang on to it.

    I'm sure you're going to cope well with arthritis. It actually has some good lessons to teach us, reluctant though we may be to learn them. It doesn't define us – unless we allow it to. It just modifies some of our behaviour. It's a pain in every sense but it's a pain we learn to live with. I hope, like me, you'll look back one day and think that, actually, your life, despite the sudden, unwanted turns and twists, has been very good.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Hodgy
    Hodgy Member Posts: 37
    edited 30. Nov -1, 00:00
    Dib Dab and Sticky wicket- well actually all of you, thank you so very much. Your kind words and optimism have definitely lifted me a little. I think I might even go out for a little walk later- I do love the outdoors and I miss running around all the pretty places I live and saying hello to everyone. There is something about fresh air that somehow can turn a bad day into a good one. So I think I might give it a go. Thank you all so very much. I've got a lot to learn but you make me see it doesn't have to be doom and gloom. My bike is due to arrive in the next few days and I'm actually excited about getting out on it. However if you had asked me about going cycling 2 weeks ago I would have said I'm far too busy marathon training. So maybe I have found my new hobby after all. :D Once again many thanks. I will let you know how things go and look forward to reading all of your posts and especially the funny, happy ones :D X
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    I agree about the fresh air. Even when it's exceptionally fresh t110007 (We used to live on top of a hill: now we just live in Scotland :lol: ) it's restorative. As are the green hills and blue skies, when we get the latter.

    I hope the bike arrives promptly and will help. I also find myself hoping that you don't get your expectations too high. Cycling is good exercise for arthritis but running is / was your 'thing' and can't be replaced. But, hopefully, when the initiative niggles are overcome (I'm thinking you might need some supports or basic alterations – either to the bike or to you :wink: ) it will become a joy in itself. Do keep us updated.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello to Hodgy and nanny2507, I hope today finds you both doing better than you expected. I want to thank you for your very kind and totally undeserved words, it's true you don't miss what you've never had but that doesn't mean it's impossible to empathise.

    Coming to terms with a diagnosis of any kind of arthritis is not easy but it certainly gives you an advantage if you're already used to living differently from the majority. When you're coming at it from a healthy background it is hard because you have had no experience of long-term setbacks, have always got better, have never had to adjust, believe and compromise for any length of time. My body has always worked against me and always will, that's the hand I was dealt and I cannot change it. My mother never let me use my ill-health as a reason for not doing something - I was always expected to try and I did - or as an excuse for bad manners. More of the same is totally different from being forced to change one's entire perception of life and how it has to be lived. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Airwave!
    Airwave! Member Posts: 2,427
    edited 30. Nov -1, 00:00
    Hodgy, remember that for all of us, fit or not, life changes and that it is something we must all accept. I at 25, did as my dictor advised and went out and got on with my life and gave aryher a damm goid ignoring, I paid the price later.
  • Hodgy
    Hodgy Member Posts: 37
    edited 30. Nov -1, 00:00
    Thank you DD and Airwave. I think you are very right DD, the hardest thing is accepting that it's not going away. I have always been very fit and active and took it for granted that, this was who I was. Running fitted me- perfectly and so naturally. I had running injuries over the years but I always over came them. Oddly now the osteo arthritis is in my foot and ankle where I tore 3 ligaments about 8 years ago and both knees, where I repeatedly tore ligaments and even muscles over the years. The thing is with injuries you are told to rest and cross train and although it is extremely frustrating- you do get better. Now waking up each morning in pain and mostly before I've even opened my eyes I'm already hoping that today it will start to get better. Then as my day takes shape the pain only intensifies the realisation sets in that it won't be happening today. Sometimes I get tearful and think myself stupid to keep carrying hope. Sorry I'm depressing. Thank you both XX
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hope is supposed to be a positive thing, and when employed correctly it can be, but when there's not the slightest chance of things 'getting better' then it is becomes pointless. The running and previous injuries have undoubtedly encouraged the arthritis but people never think of that possibility. OA often results from major joint trauma such as broken bones (that's why it is in my left shoulder, I broke my upper left humerus in January 2014 and had a pretty good idea it would turn up :wink: ) but with successive injuries such as yours the chances are increased. Initially the body deceives you by healing - I suspect it heals a little less thoroughly after each incident plus a little more slowly as one gets older but one doesn't think of that being the case. Then factor in the natural impatience to get back to doing what is the norm and it's all further compounded by stressing joints which are not fit or ready and so further buckle under the strain.

    As I have said before I prefer my OA to the other because I know why it is there and it is far more honest in how it presents. The other disease provided the damage and joint trauma thus preparing and smoothing the path for it to settle in and it duly did. I am sure that had I been able to start the medications for the auto-immune nonsense earlier than I did I would not be in such a pickle now but I am and that is all there is to it. It some way it might be harder for you knowing that an element of your OA is self-inflicted, that what was deemed necessary and felt good at the time has led to this. Mine is there because of the other- I cannot blame my parents because they were not to know what they were passing on but the anger is there and always will be. They got what they wanted, I've paid the price for the self-indulgence. Luckily by the time I was sixteen more was being learned about auto-immune issues and conditions, the meds were appearing and I made the decision not to risk passing on the nonsense to some other unsuspecting human, a decision I do not regret for one moment.

    OA is common because it is, for want of a better phrase, caused by 'wear and tear' on the joints: no matter how careful one is the body is not indestructible. The fact it is so ubiquitous works against it - and by the way no-one has a 'touch of OA': I am sure that many confuse the general aches and pains of ageing with what they think OA feels like. Those who say they only have a touch are often self-diagnosed too. Idiots. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Hodgy
    Hodgy Member Posts: 37
    edited 30. Nov -1, 00:00
    Thanks DD you are extremely level headed when at the moment my emotions are running all over the place (quite the opposite to me physically!!) Thank you for being such a supportive friend to me on here. It means a lot to me to read such understanding and sensibility. I have a long way to go and a lot of calming down 'emotionally' before I can ever be as at one with what is happening to me as you are. I think I am trying to jump through stages to get there with not a cat in hells chance of jumping anything physically or emotionally. Thank you for being the strong lady you are. X
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    "Oddly now the osteo arthritis is in my foot and ankle where I tore 3 ligaments about 8 years ago and both knees, where I repeatedly tore ligaments and even muscles over the years"

    Ouch! To be frank, I don't find that odd. Arthritis can and does set in at the site of former injuries and I don't think that has to mean broken bones. But don't blame yourself. It might well have rocked up anyway. At least you've given it a good run (pardon the pun) for your money.

    Acceptance comes in dribs and drabs. It's often a matter of two steps forward and one step back. Or vice versa. And it's ongoing. Patience, they tell me :wink: is a virtue.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Hodgy, just stopping by to say hello.
    Hope today isn't too grim, and that you've had chance for at least a little time in the sun enjoying the breeze on your face-maybe a short stroll and time to see the beginnings of spring in the gardens and parks. Our local park is bursting with snowdrops and the bare trees look amazing outlined against the beautiful blue sky- wish I could paint or write poetry !! :D

    Deb x
  • Hodgy
    Hodgy Member Posts: 37
    edited 30. Nov -1, 00:00
    Sticky wicket, Dib Dab and DD. I'm not doing great in getting my head around this. I understand that it has settled into former injury sites. I have it in both thumbs/ hands too they have raised bumps on them around my thumb joint- have done for many years. When I showed my Mum she said my hands were hereditary she has 5 sisters and she is the only one not to have had surgery on both hands. Although my mum had her toes broken, pinned and reset due to arthritis. I have always gotten by with my hands even taken jars next door to see if they could open them for me. I also have Raynauds syndrome and often wear gloves in the house and seal skin gloves outdoors. I have always coped- but this constant, sometimes agonising pain in my foot and knees is so getting me down. I've lost my dream. my marathon on the brink of losing running and I am struggling to cope with it all. Why won't my heart just let me accept all of this- tomorrow I promised myself 12 days ago I would try and run. My daughter goes to spend time with her real Dad every 2 weeks for the weekend. So every 2 weeks I used to do my long marathon training run. My hubby always comes on his bike to support me. So when I was first getting my head around this I said I won't run until our next weekend together and we will take it from there- that day is tomorrow. I am not marathon training I just wanted to see if I had any chance of any type of running still. Dibdab- Debbie I want to see the snow drops- I see them in our garden in a little planter, I planted last year. But I live 1.5 miles away from a most beautiful place called Cuckoos Hollow the snow drops around there- will be beautiful, I know because I have taken them for granted for years. So tomorrow I am going to try. I know that DD my lovely friend will probably think 'My Dear what are you doing' in the kindest most sensible 'looking out for me' way. But I have to try- you see for the past 12 days I have still cared for, bathed and physically supported my 20 year old daughter who has severe learning difficulties and is twice my size. There was no choice in that and even though I was hurting myself I did it because I'm her Mum- and she needs me. Please, please understand I need to try- if I'm willing to hurt myself for my daughter I at least need to see if I can still run, jog, walk even. I think I am prepared to try and pay the price. P.S my bike arrived too but I am waiting for my hubby to put the basics together. I need tomorrow XXX
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    We often write on here about the accepting of arthritis being similar to the four stages of grief which, in no particular order, are anger, denial, bargaining and then acceptance (there might be more, I cannot remember and am very tired after Wednesday and being busy today).

    I completely understand why you will keep proving to yourself that you can do things, what is hard is learning what we have to do to prepare to do what we want, and what we have to do to recover; we call it payback and it usually appears. As time goes on you will develop your own strategies for dealing with challenges and recovery, arthritis may limit what we can do but it does not stop us doing stuff unless we let it. OK, new stuff to do has to be found but there are many options out there for those who can still cycle, garden, swim, walk etc.

    I think you are expecting everything to fall into place far more quickly than it will. You have been used to a co-operative body until the very recent past, acceptance -wise it takes months, maybe a couple of years. Arthritically I am twenty years plus ahead of you and didn't have the inconveniencenience of being healthy beforehand which makes it all far easier. My dinner has arrived so I'd better go and eat it. Then I am going to sleep. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Hodgy
    Hodgy Member Posts: 37
    edited 30. Nov -1, 00:00
    Oh DD, thank you as ever for your comforting advice- wise advice. I know you have been here before me and most definitely tried to push the boundaries of this condition yourself- from such a young age. Thank you for standing by me, guiding but not forcing my acceptance. DD it means a lot. Rest and sleep well- Dream Daisy I hope you have a lovely relaxing weekend yourself, especially after your own tough times. Take Care Sharon X