Quality of life
Quality of life. I feel like this is one thing that nobody talks about. I have a friend with RA that severe and debilitating, I have rheumatologists, orthopedic doctors, but the one thing they never seem to ask is what is my quality of life. This is a routine question and most other chronic illnesses, but why not for RA?
I have been struggling with the new diagnosis of RA. Okay, not with the diagnosis, but with the impact on the quality of My life. I know many others are in so much worse shape than I am by leaps and bounds and many of them are ridiculously optimistic and positive thinkers and the lack of abilities do things doesn't seem to impact them so much. But it does for me. I am struggling with the notion of never being able to do the things I love ever again. Even with medication, that does help, I still have flares and triggers that makes every day a guessing game on how I'm going to feel. I can't even plan to go on a walk with a friend because I don't know how I'm going to feel tomorrow. I may wake up great and feeling good and and be able to do anything most people can. But I also may wake up barely able to walk, barely able to drive a car, just trying to get through the day. How do you plan a life around these circumstances? How do you plan to have any semblance of normalcy, happiness, and positivity?
I am a fiercely independent person, so perhaps this lack of independence affects me more than some. I've never been good with the unknown, I'd rather hear the truth and have the knowledge rather than sit in the dark even if it's uncomfortable as all hell. So living day to day never knowing what my life is going to be tomorrow and unable to plan for anything drives me bonkers that makes me feel useless.
Whenever I talk to you friends and family about it, or even a good friend that has way worse RA than me, All I really get are platitudes and reassurances that it's going to get better. But platitudes aren't helpful in the least to me personally, and that's not really reality. The reality is that it's going to get worse with age and time. All the medications we have are just to slow down the progression. It's never going to give me back what I lost. It's never going to give me back my independence. So how do All of you cope with the lack of quality of life?
First, thank you so much for taking the time to share your thoughts and experiences so vulnerably. While this may not be helpful to hear, you are not alone in this feeling. Over the last 19 years living with this, I have had the same thoughts as you. What helps is acceptance, and radical self-acceptance if that. Which is extremely hard to do because being diagnosed with an illness is never something anyone wants. There are so many ways to cope and what works for someone else, may not for you. But a few things that have helped me cope personally are meditation, prayer, seeking help from a therapist, and having a good support system around you who will understand and not make you feel less than or bad about not being able to do xyz. But really you need to be kinder to yourself. We don't know what the outcomes would be if RA or anything we didn't like wasn't in the picture. We can say well this would be better, or I could do this, but what if that wasn't the case? As we age chronic illness or not, things will change physically for us (for some sooner than others). I can tell you that people who have told you it will get better, are right. It's hard to see how that can be possible through the thickness of the fog; all the unknowns, fears, worry, anxiety etc. However you can make it to the other side. Will these moments disappear? Probably not. Though if you make it a point to get up everyday and try, even the slightest, you will find you're better able to cope than the day before. It's hard and it isn't fun. You have to sort of find a way to navigate through this new normal and find ways to be independent even if it's different from what you are used to. Also a positive mindset (not toxic positivity) has been shown to help people immensely. Treatment options are plenty, and we know a lot about RA now than we did even 5-10 years ago. Remission and leading an active life is possible, if it's not, you find a way to bring joy into your life. I like to call them glimmers. You start with the little things and build off of that gratitude. Sort of what can you focus on and control now? Rather than focus on what you can't. Here are some articles that I feel may be useful. Please feel free to reach out anytime. We are here for you, hang in there! -Effie, team member
https://rheumatoidarthritis.net/living/coping-with-fear
https://rheumatoidarthritis.net/living/break-disease-management
https://rheumatoidarthritis.net/living/grief-coping-stages
https://rheumatoidarthritis.net/living/these-are-a-few-of-my-favorite-things
Hi
. Your frustration with managing or dealing with or accepting (or any other term someone wants to use) the losses and potential losses that come from life with RA is not only understandable, but one could say inevitable. It is easy to say that others here understand what you are going through. It happens to be true, but it also happens to be of only so much help in the here and now. There is a point where, as you say, the platitudes become frustrating. I want to share with a specific article from our contributor because, besides often being hilarious and having lived with RA most of his life, he has a way of cutting to the quick. The article is titled "How Not to Cope with Rheumatoid Arthritis:" https://rheumatoidarthritis.net/living/personal-approach-coping. He starts off with the questions about how he copes with RA and all the other stuff that can come with it and says "Well, here’s my answer: I just do! Awesome! Talk soon." He then goes onto offer some good information, including on finding what works for you, but don't lose sight of that first statement.
I also want to tell you a little about my wife, Kelly Mack (also a contributor here). Like Daniel, she was diagnosed very young (age two, 45 years ago in here case) and deals with a lot of damage and loss of abilities. She has been successful, gets me to do things I wouldn't otherwise, and is, yes, happy; but the reality is that is hard work. There are things her body won't allow her to do; so she adapts, uses tool, finds a way. I'm making sure, as you asked, not to paint things with rose-colored glasses. Absolutely, feel the feelings you are feeling - mourning the losses is actually important to find a way through. The platitudes are that things will get better, but where the rubber hits the road the reality is that it is absolutely true that things can get better, but you will have to work for it. Find new ways to do things that you enjoy and find new things. People like Kelly and Daniel (and so many others here) wake up every day and make a choice to find a way and lead full, happy lives. You can too and I will end with a platitude - you are stronger than you think. Best, Richard (Team Member)i appreciate that link to the post "how not to cope with RA" very funny, and right up my alley. Definitely a kindred spirit.
I get the "you just do" mentality. But it seems every time I have a flare all by adaptations have gone out the window. Oh lovely swirling vortex of self-pity and despair. I know it's a flare, and it'll get better, but going through a flare is terrible. It always amazes me how underplayed flares are by people who write about it. And I know that's kind of the MO for most people with chronic diseases, we underplay a lot, because what's the use in telling people just how shitty it is? We just sound like a bunch of whiny people and whining doesn't help or make us feel better about it. Often whining tends to make us feel worse about it.
I know there's no magic wand for flares, we just have to get through them. Honestly when I'm not having a flare the day-to-day stuff I'm fairly adaptable to, although I've really had to rein in my limitations and not push myself so much. But it's definitely the flares that are the worst part of the whole disease.
My flares are 99% stress-induced. And there's no avoiding stress, just a part of life. But the only thing that's more stressful than life stress, is that stress making my body flare which only adds more stress and destroys my mental health. It's a shame we haven't found something to quickly counteract a flare.Hi
. One of the reasons I focused on Daniel is that he doesn't tend to sugarcoat things or hold back - such as this article simply titled "Fatigue Stinks. That's It:" https://rheumatoidarthritis.net/living/morning-fatigue. That said, I get what you are saying about people understating it. Kelly notes that people don't want to hear that she has "Sweet Baby Jesus RA" called that because that is what you are forced to scream at times. Tamara wrote here about those with RA feeling the need to fake being o.k.: https://rheumatoidarthritis.net/living/faking-it (note: you never have to do that here).
Concerning the flares; everyone wants that magic wand. Kat wrote here about having a flare action plan: https://rheumatoidarthritis.net/living/flare-action-plan, but make no mistake - the plans mitigate, not prevent or stop.
The big key is finding a treatment plan that controls the RA. I know it took both Kelly and Daniel a long time to find a medication that brought things under control, but it did happen. If you feel your RA is not well controlled (and by the way you speak of having flares it doesn't sound like it), don't hesitate to talk to your rheumatologist about altering or changing your treatment regimen. The trial and error method of finding a treatment is a big problem. Although there is now the PrismRA test that predicts if an individual is unlikely to respond TNF inhibitors. Hopefully further tests for precision medicine will make treatment easier. Best, Richard (Team Member)
It's hard to want to speak to my rheumatologist about new and/or different medication because I have only been on leflunomide 20mg for 5 months. On leflunomide I have absolutely no side effects! And where once my hands and wrists would be swollen and barely move on a daily basis, now the swelling is almost always gone, and they move great. Of course I still have a fair lack of dexterity but damage is damaged no drug is going to undo that. I feel like I need to give this drug a fair go before switching or adding because the lack of side effects is super awesome. I have been noting my flavors in the severity so that I can decide after several more months or a year if the flares are overly frequent. Basically find a decent percentage of good days versus bad. That will help me find a decision as far as meds go.
Oh for sure if fatigue is a real thing! I do love the way he speaks. Luckily my fatigue is extremely minimal since starting leflunomide. On good days I can hike a mountain for three or four miles now. Before the leflunomide I can barely walk a mile. Also leflunomide has completely gotten rid of my food intolerances! Never expected that to happen. I never thought my food intolerances were RA related until I looked it up and found that it is fairly common. During a flare, however, I can barely get moving around my house. Again that will go into my percentage calculation in regards to meds.
I sure don't fake it like tamara fakes it! I'm more of the opinion type: if you don't like the way I look then close your damn eyes! Haha. I certainly don't force myself to suffer (anymore!) to appease other people. I found that most people that see me limping or unable to use my hands well, usually we'll jump up to help me. This is especially true of strangers. Although, haha, it is a bit of a kick to the ego when a 70-year-old woman is helping my 38-year-old self open a door! Ha!
Don't know if I specifically have a RA flare plan... So much as I have a do whatever it takes to minimize the pain plan. Generally involves lots of rest, plenty of food, fistful ibuprofen, icing affected area every 4 hours... And the most important is taking ibuprofen right before bed. Don't know why but it seems to help the most to take the inflammation down. The last time I had the worst flair of my life, right before I started taking leflunomide, I stopped sucking it up since it was going on for a month. And saw orthopedic doctor and got cortisone shots and both my shoulders. I can definitely see why anyone with an inflammatory disease can get hooked on steroids fast. Even just a tiny injection in a joint made me feel like Superwoman for the next month! However it did have its downsides with side effects. So at least I know that's an option if it becomes intolerable and I can't kill the flare through normal means.
I am however curious as to your concern of my flares not being controlled as they should be. With the right meds do you not get flares?Hi
. Given what you said about your experience and amount of time with leflunomide, I completely get your decision to hold pat for now with your treatment. Concerning the question on flares, it is really tough to answer because every case is different and what constitutes control is different. Optimally you would find a treatment that puts you into remission, but the reality is some people never get there. Some people get close to remission and still get flares. You mentioned stress earlier, which brings up all those nasty "other factors" that can contribute to bringing on flares - tough to control, but certainly make a difference. Kelly takes low-dose prednisone, but others struggle with it. I know this might not be terribly helpful, but it will be a learning experience. You may want to do a search here on flares and just poke around to see what others have said (there is a lot of content on flares for obvious reasons).
As a side note: when I read what you said about asking a 70 year old woman for help I couldn't help but think of this article from Daniel on asking for help: https://rheumatoidarthritis.net/living/ask-help-assistance. He notes that "Well, you haven’t lived until you’ve asked someone 30 years older than you to help you get something off the top shelf." Best, Richard (Team Member)
