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Thursday, February 5, 2015

How low can you go?

     I can sometimes predict when I am going to have a bad day.  Like when coping with RA - the pain, the fatigue, the brain fog, the sadness are just too much and I dissolve into tears easily.  Or when trying to put on a brave front and keep on smiling just gets to be too much.  Other days it seems less predictable.  Today is one of those days.  
     I have been struggling with several issues with my RA for several months now and for whatever reason today it is all hitting me.  Usually I can smile my way through the day and by doing so it keeps me from falling apart or giving in to the sense of hopelessness that sometimes creeps into my mind when I least expect it.
     I can respond when someone asks me "How are you?" by saying "Fine" even when I am very far from fine.  But people really don't want to know the answer to that question.  Most times we ask it as a greeting and not to check in with someone's health and well being.  So I never say "Well actually I am feeling really lousy today thanks to the ever present pain and other issues surrounding my RA".  Really? They would run as far and fast as they could! So I don't.
     But the fact is I am feeling very weak and beaten at the moment.  I usually get some sort of break from the pain, etc. but this time it has been fairly non stop and it is breaking me down day by day to the point of feeling weak and hopeless. I am venting here because writing down what I feel has been a safe and helpful outlet in the past and I am sure hoping it does the trick again this time!  Time will tell.
     These are the times frankly that I have to almost let myself accept the sadness, hopelessness, etc. so that I can start to find my way again.  I have to remember that it is OK to feel these emotions from time to time.
     I used to think that immersing myself in these emotions would just make it that much worse and, to be honest, I was, and still am fearful that if I fall too deeply into the hole of sadness, etc. I may not be able to get back....that really does haunt me.  
     But the fact is that if you hold all those tears inside you very well may drown.  Even though I know this in my mind, I still find myself trying over and over to not acknowledge it.  I know why....because once you let those emotions in the door, it means you have to move forward or sink deeper.  By holding them at bay as long as I can I somehow convince myself (subconsciously) that it will pass and there is no need to revisit the sense of helplessness and hopelessness that is such a part of the RA picture. 
     So I am going to give myself permission to have a good day or two or three to just let those emotions surface because in the end that fear and helplessness will give way to an opportunity to be brave and fearless once again.
     In time, and it does take time, good thoughts will hopefully fill my mind to replace the discouraging ones that come to visit sometimes.  I want to KEEP GOING for me, my family, my friends, my co-workers, my community, etc.  
     I have to reach out not just when it reaches a crisis but long before that.  I have to trust that my family and close friends will be there to prop me up when I need it.  I tend to not want to burden others with my issues but there is a fine line between relying on others and sharing when you need someone to listen or help out.
     It has always been important for me to remain independent and I think that is the scariest part of a disease like RA.  It can rob you of that freedom and I live in terror of that becoming a reality.  I know full well that the specific RA road that I am on is different than anyone else's so I have to be the one to forge my own path and make that journey in the best way I know how!  But that also means looking to others to help me "map out" that journey and provide me with the necessary "supplies" along the way.  
          If I can run these thoughts though my mind almost like a mantra then that gives me hope that things will get better, that I will see improvement and this flare will subside, the fatigue will fade and postive thoughts return.
     I will carry HOPE in my heart in these coming days because if I can believe that Hold On Pain Ends I just might be OK.


Wednesday, January 14, 2015

How to work out when it's not working out

          I am going through a very frustrating time right now around working out and the fact that at the moment my attempts to do so are NOT working out.  One of the many issues that those of us with chronic diseases like Rheumatoid Arthritis face is that despite knowing how beneficial it is to workout AND having the desire to do so, our bodies are not always so cooperative.  We hear from virtually everyone in our lives that exercising is the key to longevity, good physical and mental health, etc.
     I GET IT!  I really do.  But the reality of RA is that because we live with a disease that flares with NO RHYME OR REASON or rationale our best intentions can be dashed in a moment.  A moment you say?  Yes.  
     People with RA can literally be getting ready to head to the gym, pool, etc. with every intention of exercising and when they get up to move their _____ (fill in the blank with any joint) they experience pain, swelling and limited mobility.  It happens to me over and over and over.  I swim.  I prefer early morning for a variety of reasons.  My routine is to get my gear ready to go the night before so in the morning I just throw my bathing suit and warm ups on and head out the door.  Far too many times lately this is simply not happening.  I get up and this hip or that shoulder or this ankle or that wrist or all 4 are saying "nope, not today Nan".  It is so very discouraging.  I want, no need, so badly to exercise.  It is what gives me energy, a clear head, better sleep, weight control, etc.  Without it I am none of the above! I try to tell myself it is OK I will do it tomorrow but that is getting old and so am I!  I need to find a way to get through this.  More medication is not the answer...tried just gives me more problems with its various side effects.  I have been on dozens of them at this point and although I am under moderate control....
....the reality of RA is that unless you are in remission you WILL FLARE! It is that simple.  I have said here repeatedly that the single worst aspect of RA is its chaotic nature.  Never knowing when the pain, swelling and overall discomfort will strike without any apparent reason. It is that complete lack of control and being at the absolute mercy of this master, RA, that makes living with this disease so challenging on a daily basis.  Living with this disease for over 18 years now you would think I would be able to adjust to this and move on....well not true.  I think it is simply in our nature to try to establish control over our lives and so when you are continually hitting a brick wall when it comes to RA management it makes one weary, frustrated, depressed and discouraged.  I have to try to find a way to get through this and I will but it sure is a challenge!  
     So now that I have had my rant....what exactly can we do? Well, here are a few thoughts I have.  First of all if we cannot work out on a given day or week even, we pledge to not feel guilty about it.  That is easier said than done.
Everywhere you turn these days from TV to ads to social media we are confronted with the attitude that if you don't exercise you are 1) lazy 2) overweight 3) weak minded 4) will never be healthy and on and on.  Although these are meant to motivate us I suppose, they just serve to make us feel even worse than we already do.  That we have no chance of even being OK let alone perfect!
     Well, time to accept that we are who we are and although we can make some choices and decisions and will do that as much as possible, there are simply some things out of our hands thanks to RA.  A reality I hate but one that has to be assimilated into how we operate day to day.  Next up, some tidbits of information I offer that we can read over and over when we are feeling discouraged in the hope they will get us through the tough times and we will emerge stronger and ready to take on the world (or at least our little part of it).                                                           
     This needs to be our basic premise....because RA is so individual we need to get away from listening to and comparing ourselves to anyone else!  The smallest gain is still a gain.  

    I know this is true because in the summer when I am already in light weight clothes I am much more likely to go for a simple walk than in the dead of winter here in Vermont where I have layers of clothes, boots, etc. to put on before venturing out.  So knowing this is half the battle I hope and even putting out your clothes or bathing suit so they are ready to be put on helps. 
     Despite the constant barrage of information about "no pain no gain", intensity workouts, etc., an easy workout is incredibly beneficial.  I repeat, incredibly beneficial!  There is no need to lift 20 pound weights or do kickboxing!  
     Moving our bodies for even a short time is better than not moving them at all.  So if you are feeling good enough to simply walk around your house, do that 5 times instead of 1 time and you have helped yourself immensely.
     Try to remind yourself that the mental benefits of exercise are many!  Not only the chemical release of endorphins that are proven to enhance mood, but the simple knowledge that you got up and moved your body is a powerful emotional uplift!  YOU DID IT!  Repeat that throughout the day and you will find that you are smiling a lot more and feeling a whole lot better about yourself.
I cannot say often enough how perfect water workouts are for folks with RA.  It is joint friendly because the buoyancy of water makes it joint neutral and that means you can do just about anything in the water from jogging to strength training to the traditional lap swimming.  The key is to get yourself there.  I get discouraged when I don't get there because of the pain of a flare but eventually it passes and I get my butt to the pool and feel so much better for it!  If you try it you will never go back!
     This is the time of year when it seems every TV talk show and every magazine we pick up urges us to diet, diet, diet.  I HATE THAT WORD.  I literally cringe when I hear it.  The key to eating is to do so with an eye to making good choices without depriving yourself of the foods you enjoy. I simple refuse to face a life that will not allow me to ever have a glass of my favorite wine and some pretzels because the carb count is to high.  Moderation, a varied diet and portion control along with some form of exercise are all we need to get control of those things we CAN CONTROL.  
     This is a great mantra to repeat to ourselves this year and I encourage you to follow it.  It is yet another device to put into our RA Management Toolbox!


Monday, January 5, 2015

New Year - Fresh Start

     I think my favorite part of the beginning of a new year is that feeling of a fresh start I get each time the old year ends and the new one commences.  Despite it being the dead of winter in Vermont there is still a feeling of lightness as a new year is launched!
     I do not often indulge in the practice of new year's resolutions as that seems to be an exercise in futility and frustration to me.  For those of us with chronic illnesses, making predictions of what we hope to accomplish over a year is not very productive or even positive from my perspective.  It is as silly to me as seeing a fortune teller and hoping it comes true!
     How can we say in January what we can or will be doing months from now?  Just cannot buy into that one.  On the other hand I am not suggesting that setting some realistic and doable goals are not a good idea.  On the contrary I think it is a wise and wonderful way to start each new year!
     It is a time for me to reflect on a variety of issues around my RA management.  For instance, I like to consider my exercise goals/plan and work towards that but without the "pressure" of a "resolution" which for me seems so intense. I think when setting goals it is important to remember the pitfalls which are not unlike what I think is negative about resolutions.  
     When determining what goals you would like to implement it is important to not make them so big and challenging that you cannot accomplish them.  In the same token, setting up too many can be just as damaging.  Limiting yourself to a few items that you want to really focus on will make success a lot more likely!  I also think it is important to be specific so that you are not so vague that you cannot even determine if it is successful or not.  In addition I like to write down my goals just like my daily and weekly and annual work tasks so that I can have the satisfaction of checking them off as I accomplish them! It is so satisfying to check that box when you achieve that goal or get that task done.  Plus it is a bit of a pat on your own back which is very encouraging and serves to keep you going with your goals.
     Feeling success is a key part of continuing improvement and overall management of RA.  Not only do I use this new year as a time for setting goals relative to exercise, etc. it is also a time to reconsider your overall RA status and the treatment options you have chosen.  It is wise to check in periodically with all of aspects of your overall management of RA and the beginning of a new year is a great time to do it!  I wish everyone a happy, healthy and joy filled new year!


Monday, November 17, 2014

times they are a 'changin

     Although I am a big fan of fall (it is my favorite season by far!) the one aspect I am not thrilled with is the need to turn back the clocks. Darkness falls upon us each day by 4:30PM and what that does to me both physically and mentally is not very pleasant.  
     I suspect many others have the same reaction.   My days are shortened not just in terms of the light but also my ability and desire to be active is lessened by as much as 4 hours!  The end result is I have to really fight with myself and this overwhelming desire to just change into my PJ's when I get home from work and vege out with the knowledge that I should do some type of physical activity to stay healthy.  
         Being torn between those two choices is the hallmark of how difficult I find this time of year to be for me.  So I try to get motivated to workout in the AM but alas the same issue rises up as it is not light out until nearly 7 AM here in Vermont and I like to head to swim no later than 6:30!  That coupled with the fact that once the cold weather hits I need to wear a lot more clothes just to get where I am going and the same dilemma presents itself.  
     Change is not bad in and of itself.  In fact, if we can learn to adapt to it, it just might make us more flexible and better able to adjust to changing circumstances that surround us on a daily basis.  RA demands that from us already so that means that those of us with chronic conditions should have a a leg up so to speak on the rest of the world, right?  I like that way of thinking!  
     The challenge really is mental when is comes right down to it.  I think we need to have a plan in place so that when the time shift happens we are prepared to deal with it.  I tend to just wait till it happens and then I go through at least a few weeks of non activity while I wallow in my loss of light!
     So next year I am going to try to eliminate this obstacle by wrapping my head around the time change a few weeks in advance and get a plan in place to overcome the inertia it seems to produce in me.  Maybe just remembering that the actual time is still the same just the light is different will help.  Or maybe if I move my workout time back while it is still light out so that my energy level is not depleted will be the key.  Between now and then I will come up with a plan to offset this annoying occurence so that I can remain healthy throughout the year!


Monday, November 10, 2014

seasons of change

     Right now we are "in between" seasons as summer has wrapped up, fall is unwinding and soon we will be in the throes of winter.  One of my favorite holidays of the year, Thanksgiving, is approaching and with it comes the chance to reflect on all that we have to be truly grateful for in our lives.
     This time of year also prompts me to re-examine my RA status; medications, treatments, plans for the new year, changes I want and need to make, etc.  I really like to do this before the new year begins as it gives me time to digest and decide what is best for me in the coming year.  I don't want to find myself at year end wishing I had made some changes I did not get around to and then entering a new year with no plans and feeling at loose ends.
     I am often teased about being too highly organized but I have to say that when it comes to managing my RA being organized is something that has made my life so much easier and I am truly grateful for having that trait!  Whether it is planning for trips, RX's renewals, doctors appts., exercising, etc. the ability to plan and has been a key to living well with RA!
     Which brings me back to being thankful and how that simple attitude permeates my life and informs every day I spend on earth.  Without gratitude I would be much less of a complete person and certainly a lot less capable of managing RA!



Wednesday, October 1, 2014

The RA Costume - Halloween and beyond

          This being the month that brings us Halloween and the costumes we often don to trick or treat it occurred to me that for many if not most of us with RA managing our appearance is akin to the effort it takes to get together a costume for Halloween.  
     From the moment I began to suffer with RA, it became a huge hurdle to keep up with my appearance.  I have tackled those hurdles and now take great pride in my ability and determination to take care of my appearance but it was not easy not only for the obvious physical reasons but also the psychological ones as well.  
     Lets discuss some of those.  One - the pain - the discomfort associated with RA often translates into an inability to even brush our hair let alone attend to makeup, etc.  When I am flaring the simplest task are excruciating and so often any extra effort just goes by the wayside.
     Two - fatigue - the never ending tiredness takes its toll in terms of having the energy to concern oneself with anything beyond just general "upkeep".  
     Three - side effects of medications - too often the medications we take have side effects such as weight gain, skin dryness, eye problems, etc. that change our appearance in a not very pleasant way leaving us feeling unattractive, undesirable and asking ourselves "why bother?"
     Four - depression - The psychological burden of having a chronic disease means we are likley to experience some level of depression associated with RA at some point.  In some cases it can be quite dibilitating.  Clearly if one is sad or depressed or anxious taking the time and effort to keep up your appearance is often just too difficult. 
     Five - physical changes - RA changes your body constantly, wheather you like it or not.  Swelling, redness, skin breakouts, and of course weight gain are just a few of the physical changes that often accompany RA.  It becomes difficult to even gaze in the mirror and wonder who is looking back at you let alone stay motivated to look nice.
     Six - low self esteem - it is a real challenge to have high self esteem when you are being forced to give up so much of who you once were as a result of RA.  Things we may have loved to do in the past may no longer be possible and that can translate into feeling hopeless and unmotivated to make the necessary adjustments to maintaining high self esteem. By extension taking care of your appearance begins to take a back seat.
     So how do we overcome these nasty attitudes and realities?  Pause and take stock!  Simply knowing the what and why helps to offset some of these negative and harmful issues.  If you can identify with them you can change your response to them! 

     Take small steps.  As the saying goes, "Rome was not built in a day".  If you have gained weight, don't get on the scales for a bit.  Instead give yourself permission to mourn the old self and embrace the new you.  Buy one or two new pieces of clothing that will accomodate your new size but still flatter you.  In today's world there are lovely clothes for any size! In time, you can work on trying some strategies for maintaining a healthy weight like keeping an eye on your diet, walking a bit more each day, etc.  But with all of the changes that are thrust upon us with the onset of RA, taking it slow is a very necessary stratgey in our toolbox!
     Share your feelings with friends, family or your RA Support Group.  Finding others who have the same frustrations and battles goes a long way in restoring your depleted self esteem.  Getting reassurance from loved ones that you are still the same person they love and admire is key to keeping our spirits up and our joy alive.
     Try something new and different to pick up your spirits.  When I had to face the fact I could no longer run for fitness I had to find a different outlet and so swimming became my new passion.  It was a challenge but one I am so glad I decided to take on!  You can also try a new hair style or color.  That is often just the pick me up we need to feel rejuvinated. 
     The differences we now must contend with can be viewed as opportunities as opposed to deficits and embracing that overall difference can lead to a willingness to take better care of ourselves inside and out.  Then you can confidently say "here I come" - a new and improved version of myself complete with a beautiful "costume".