Each of us is an individual and each affected differently by this disease, the way we think about it can also make a difference, sometimes without us even being aware of what we are doing. If we refer to ourselves or think of ourselves in a negative manner this becomes a habit and a habit thats hard to break. Many of us agree that often thoughts come and go so quickly that we barely have time to acknowledge them, but if we try to think positively about our small achievments and allow ourselves the reward of some self compassion but not self pity we can learn in time to begin to change our negative thoughts into positive ones.
No one knows your RA and how it affects you better than you, thats not only how it physically affects you but how but also how it makes you feel.
Heres something i posted some time ago that many on this forum found helpful as away to picture and understand this, i hope newer readers find it helps them reflect on how this happens and that it re inspires ones who may have lost the habit to re new their efforts.
The Two Great Wolves
An old Cherokee is watching a storm with his young grandson as thunder booms and roars all around them "The great wolves are fighting" comments the old man. "It frightens me" replied the young man. The old man replied "those two wolves cannot harm you, but be aware of the two wolves inside you that fight and howl inside you, they can be dangerous". The younger man questioned "fighting wolves inside me? I dont understand" The old man said one wolf is bad the other good, both howl as they fight,the bad wolf howls of anger, envy, sorrow, regret, greed, arrogance, self - pity, guilt resentment, inferiority and lies. The good wolf howls of peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith. The battle has raged long,many times and many days". The young man listening as the thunder grows louder asks "grandfather which wolf will win?" the wise old man replies "my son the SAME wolf always wins" the young man says "so many battles and the same wolf ALWAYS wins?, but which wolf wins grandfather". The old man answers without looking away from the storm "the wolf you feed".
Have the best day you can my friends.
Written by
Leonwp
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Thats the way Mike, but if you ever have to meet the PIP assessor feed the bad one raw meat for about 7 consecutive days, then starve it for 3 days before the meeting.
That is so true and very very good. I try to be positive and most days i can be. Some days are really bad and i have to let it have its way and get up the next day and it will have gone. I never let the bad wolve last more than a day. I wear bright colours especially pink and have my hair and nails coloured many colours so if i am having a bad day and someone mentions them i have to interact with them therefore brighten my day up.xxxxxx
I agree with trying to stay positive but I don't think a quote about growing up in either a good or negative doesn't really have a baring on any person suffering from chronic pain in relation to any of the reactive arthritis. This type of quote perpetuates the thinking that such incurable diseases that affect immune system function aren't as bad as we say or are nor there at all because we look fine. To be honest I have my ways of staying positive but that post was more than a little condescending.
Like i said different for everyone, until 5 years ago i had never heard of arthritis snd never had a day off work sick in my life, now i am almost bed bound, unable to walk or stand and only have use of half a finger and a thumb on each hand, i have huge doses of morphine to allow me to sleep twice a day for maximum 3 hours and after maximum doses of methotrexate and 3 attempts at bio therapy i am a man of 6'3" who now weighs 9 stone instead of 18stone and on s liquid diet due to the fact that i am no longer able to digest solid food as the meds have virtually destroyed my stomach, due to ear infections i am deaf in one ear and have 20% hearing in the other, i have 9 teeth left due to gum and bone infections, i lost custody of my son after 8 years because i could no longer look after him, i lost my job paying 45k plus bonus and a company car, i lost my home, and i lost my beloved pets, i now live in a care facillity. So just how much do you think i under estimate RA??.
I personally found this topic facinating. Thanks for sharing !
Coincidentally i just bought myself a new mid year diary with a motivational quote on the front cover so that i could remind myself every time i picked it up to help me with my bad days. The quote is :
' The body achieves what the mind believes.'
By the way, i have Behcets Syndrome, Psoriasis, Psoriatic Arthritis, Diabetes and Have just been diagnosed with Liver Cirrhosis which is non alchoholic related as i dont drink. The same week i have received a letter from the centre i go to for treatment telling me that my last blood tests showed i am chronically deficient in Vitamin D and B12 so thats even more tablets to add to the forty five i take each day.
It is people like yourself that i find so inspiring as you cope with so much trauma so thanks for taking the time to think of something that could help others to cope better at times when they really need it.
I like the story, but am deeply shocked by your own. I have not heard of anyone in such a bad condition, unable to get the disease process halted if not reversed by modern drugs. I'm thankful that I can tolerate Rituximab and Methotrexate, but even that is not enough and I will probably be on a low dose of Prednisilone for the rest of my life.
I do hope you are getting the best possible advice. Jora
Thank you for your concern. Im getting good advice and have a great consultant who has 20 years experience, i had very fast disease onset and from pain in my knee i went to a wheelchair in 5 weeks, my consultant has twice sent my labs back for clarification wgen i reached 83 + on esr and 603 on ccp1, my disease is as acute as it has been since day 1, i have never yet had a single days remission, i was very unfortunate in that after a short time mtx made me very sick and twice on the bio therapies i woke up in the recuss department in toxic shock (actually adrenalin criscis rather than anaphalaxis) and had to come off them immediately. Ive had the end of the stick with the pooh on unfortunately but it very rarely effects anyone this badly fortunately. There is only one bio therapy left they can try which is intravenus in hospital not more of the 245 tablets i take every week, but that bio therapy can and does have extreme side effects including fatality and once administered is not reversible. As it cannot undo the damage already done i wont take that risk. Your kind thoughts are very welcome, i hate whinging about myself as there are others worse off and people who live with worse diseases and it breaks my heart when children suffer. I hope also that maybe a few people who feel down read this and realise that there are always people who suffer less but many who suffer more.
I too had very rapid, extremely aggressive - onset RA. I was utterly immobilised by inflammation and pain, so,was hospitalised. I'm so grateful that I have responded well to the infusions ( not without risk, I know) and can tolerate Methotrexate. I'm a shadow of my former self ( albeit a steroid-bloated one) but am blessed in many ways and remind myself of that on a daily basis.
Thank you for your kindness and consideration, we are all fighting the same fight im no different, i just travelled a shorter quicker road thany many of you wonderful people some of whom suffer for many many years.
I fogot to add that i got the care home place after twice being denied DLA but finally winning it at tribunal which took 18 months, 2 weeks of that 18 months i lived in a tent under a bridge due to the fact that i lost all my benefits as i was unable to get to the job centre to sign on but fortunately eventually the Salvation Army took me in, gave me shelter and helped me back on the road to some level of existance.
I agree with Jora, your story is truly shocking Leonwp. I don't know how I'd cope with not being with my children. I can handle the pain, kind of, but I would struggle to stay positive after that.
I hope you find some comfort from somewhere, and soon.
It is stories like yours that reinforce in my mind that I am not unlucky, or in a bad way or however else we sometimes feel. I count my blessings for what I do have.
I relish every minute of pain-free existence, even if that minute only lasts until I try and stand up.
I also understand what clinical depression is, unfortunately. Like you I never used to have time off sick, unlike you I still have my house and my children.
Sometimes it doesn't matter what people say, there is a dark place in all of our minds that we can slip into, often without a specific trigger. At these times staying positive is almost impossible.
For me the trick is not to let myself get to that point - the point of no return as it were. If I stay active and fill my time (and my mind) with things that leave me little choice but to do them (and as you will know, the children see to that), then I always, without fail, feel better for it in the long run. If I disappear into the abyss and withdraw then it becomes harder and harder to stop the slide. Once you gain momentum, in either direction, it gets increasingly difficult to stop. This can be both a bad thing and a good.
Feeding your good wolf is about gaining momentum in the correct direction; good things lead to good things. It sounds like happy, clappy bullshit, and that is exactly what I would have thought in my cynical mind say, ten years ago.
But I have observed the people around me throughout my life and some common themes emerge. Those that do well are the ones that want to. Really want to, and don't waver whatever obstacles are put in their path.
Some of these people have never had to deal with something like RA (or any other type of chronic illness), but if they did, some of them (not all) would deal with it and move on.
We will all have health issues at some point, the question really is when. How many people die when they are 90 in their sleep, peacefully after never being ill? Not many I'd guess.
Some of us have been tested sooner than others, but we all will be at some point. And then our true colours emerge.
You have my utmost respect Leon, for going through what you have and still trying to push a positive message.
Bless you Ade at the end of the day we also carry on because frankly worrying about it is only going to make it worse not better. You are so rivht about people, on the whole i have found that if you believe you can achieve something you probably will and if you believe you cant you definately wont. Bless all of you for your kind words.
Your story has really touched me and made me think. Thank goodness That the Salvation Army helped you at your lowest ebb. I will make a donation today. I've had a tough few months but nothing compared to what you've been through. I started this week determined to get back to my Zumba class tonight, even though my foot drop means my right ankle is hardly moving. Now even more focussed on doing as much as I can and pushing on through.
Thinking of you and hoping for a miracle for you, or even some improvement in one of the areas that afflict you.
Hi Ade, Thanks for thinking about that. My back MRI showed no issues and after the nerve conductive tests (which surprisingly showed an issue!) I asked if I should carry on moving my ankle as much as it will, walking and should I go back to Zumba? The answer was Yes, try to keep the muscles as strong as possible. I went last night but stayed mostly on the spot, marching and doing the arm movements, the music and company was uplifting, one of my sisters and my best friend also go.
Good to hear and totally agree about keeping the muscle (and flexibility) as much as possible, it's amazing how quickly and totally muscle wastes away when you literally can't use it at all.
I still have foot drop and pretty sure I always will now but have improved massively from doing exercise as soon and as much as I could - given the obvious constraints.
What has been most distressing for me was the total wastage of some muscle groups where the neuropathy meant that I literally wasn't capable of engaging those muscles. Trying to regain them is a lot harder than not losing them, if you have a choice of course.
Not sure what my prognosis is, and obviously getting no commitment from the consultants, both feet are still far from "normal" but a little better than when the foot drop first happened. Just take it day to day, I've booked a reflexology and Reki appointment next week to see if that could help. Can't do any harm
I hear what you are saying however I think there is a different message in the text than the one you describe. It isn't really 'think good things and cure your minor aches and pains', it is 'don't give in to the negative side of your emotions'.
We all feel how we feel. It took me many years to come to terms with the changes that RA made to my life, both physical and emotional. I wallowed in self-pity, I didn't know any different. Why should I 'make an effort' when others don't seem to care? Lots of negative thoughts that took me years to work through, and drink through.
But that didn't help me in the slightest. It never made the pain go away, it didn't stop my joints from eroding or enable anyone else to understand my condition. It just makes people sad, because even though they don't 'get it' they do care about you and it hurts them to see you like that. They are powerless to help and so withdraw.
The result can be a widening chasm between the people that love you and you. Alone to wallow. Again, not going to help.
These days I still get down, we all do. I still have pain, in fact even though my RA is reasonably controlled I have constant pain from a rather bad back (very bad as it goes).
But instead of wallowing when my back went, this time I did something about it. I got up, went to the gym and kept going until I could stand up without falling over.
I could've just stayed stayed at home and swallowed painkillers (even though they don't really help that much), and if I had if still be in a lot more pain.
But this time round I fed the good wolf, not the bad wolf. And it helped ME. And in so doing it has helped the people around me because they haven't had to watch daddy / husband being depressed. So much.
I hope you don't feel that I'm patronising you or being condescending, I just now believe that positive thought is more powerful than we might believe.
If it helps us be happy then it can only be a good thing, surely.
That is exactly what i tried to say Ade but i dont have the skills to put the positive inflection you managedand if i listed my problems and conditions it would likely turn many just starting out on the fight with this disease into nervous wrecks, so i quoted an American First Peoples fable, if ever there were a race that needed motivation now its them, Wounded Knee isnt only a symptom of RA or OA its also a massacre (google it folks).
It is so easy to feel sorry for yourself when your in pain and not having a good time. The mind is a very powerful tool 😊 positive thinking can do wonders for you if you allow it to. It is hard to be mindful it's making it a habit so you don't have to think about it. Smiling is infectious if you smile at someone it can change that person day, then hopefully they will smile back.
Think happy thought it does help even if all you want to do is cry, change bad thoughts to happier one give it a go.
It's been difficult these last few months but I try to be positive and have faith, and it does help. Sending positive vibes to everyone with love hope and empathy, we are all in this fight together, but with individual challenges.
I loved this story. Thank you for posting it. I do think you have to be able to hear what it is saying and obviously, as with most things, some people will read it wrongly so hear the wrong message. My analogy would be that some people will think rainy days mean misery others will know that because of them we have the beautiful Lake District. The weather remains the same but it is more acceptable. x
Lovely, thank you- so true. I will share a couple f things which help me with RA fatigue, if I may.
After a number of years suffering from the exhaustion of ME, (The tiredness has a similar effect but feels different to the fatigue of RA) I developed a way of writing a list of things I absolutely had to do in diary form so I wouldn't forget when I had to prepare for meetings etc. But on the LHS of the paper I included a wide column in which I wrote a list of all the things I had done each day so that I could be encouraged. This included things like chatting to people on the phone, going shopping for milk, emailing - all of these take considerable amounts of energy but we tend to not see them as achievements, sometimes just getting up in the morning is a considerable achievement!
The other thing is I have written a list to myself of the things to remember when dealing with fatigue. It includes metaphorically buying a sharp axe with which to cut up tasks into small pieces and then cut them into even smaller pieces if those are too big to manage. An extra note tells me to use my sharp axe to kill off any criticism from others, or any suspected criticism from others and also any criticism from myself. The image of myself wielding my axe whenever I suspect I am about to say anything negative about myself (or think it) is very helpful - it conjours up the right amount of determination and aggression needed to deal with my inner bad wolf!
I feel for you, Leonwp. You have so much to deal with and have had so many difficulties as a result of your deterioration in health. I salute you for your courage and determination and for my part I will continue to be encouraged by your story rather than frightened by it. I will pray for you from time to time that you will find all the help you need to continue in your positive fight both from within yourself and from outside. (I hope that you don't feel insulted or patronised by that - if so I do apologise.)
So sorry to hear your story - the differences in how we each experience this disease are so extreme, and so unfair! I hope that the next drug that hits the market is the magic one for you, and that it's not too far away.
I have been thinking along those lines recently, trying to be positive and remember to think about and appreciate what I CAN do rather than what I CAN'T.
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Some thoughts - a new type of courage is required for RA?
RA & Dating
