Volunteer ..... You Are An Expert of You!

I know my body is unreliable, I can't count on it, so how can I expect to offer it up for

someone else to count on?  I am only going to speak of what I know, so when it came to volunteering, I started out small, it isn't about using your physical attributes and your unreliable body.  On the request of my rheumatologist to be involved in a study that involved filling out a questionnaire very early on in my treatment and would be ongoing until I withdrew.  She told me that it would not help me directly, but hopefully would help others, in time.  But it did help me because as time passed and I realized that what was in my brain was important in research and to other patients.  Since I was mentored by a wonderful patient when I was diagnosed, I felt that anything I could manage to do, to "Pay It Forward", I would try to help. 

I have learned that I have to be careful what I commit to, just as with anything else in our lives with RA, if I overcommit, I pay for it physically, I also never want to let anyone down just because my body is letting me down.  I started small, and 5 years after the first questionnaire at my rheumatologist, I'm amazed by the opportunities I have been given and the depth and breadth of what I can contribute.

 

You may already be contributing by supporting other patients via social media.  Research grants for studies are now given preference and also most times now MUST have a patient participation component.  This can include assisting in writing the grant, checking the study outline for relevance to patients therein at times redirecting or honing in on better data collection.  Checking language of questionnaires/surveys, researchers/academics are accustomed to writing for other academics, they often require patient assistance in communicating effectively in their research to patients in order to obtain the data they are seeking.  You are an expert of your body and of being an experienced patient.

 

My contributions have given my life a facet that it did not before, in the interest of helping others, now and in the future.  I have to say I have done many things now that have made me proud of myself.  The me from my first year of diagnosis could never had dreamed of contributing in the ways that I have.  Patient-centred Health Care is not a trending social media topic, it is happening, patients are demanding it and the only real way to get there is with you .... There are 2 kinds of research, quantitative (data) and qualitative (experiential), this is the one you are already an expert at.

 

Research that I am currently involved in are about power roles between patients and the health care providers and one to develop a measurement scale of patients effectively involved in research.  I am currently serving on a team that is involving patients in health care education at the local university, at hopefully every level of the curriculum. 

 

Find out what is out there in your area, at your local health education institution.  How can you get involved.  What research studies are looking for participants, locally, nationally?  Only you can answer a questionnaire about your situation.

 

Nothing About Us, Without Us!

Side Effect: Loss of Shoes and .... Clothing

Here I am, about three and a half years into diagnosis and treatment.  I am almost ready to weed through my beloved shoe collection, donate and consign my beauties.  Aside from being mentally ready for this challenge, there is also the physical aspect of going through them, sorting, and getting them to their perspective new homes ..... From the threads I have seen online, I am not alone in this.  It will be a challenge and I know it.  I am posting this wonderful talk from Dr. Catherine Backman - Changing Shoes: Impact of Arthritis on Self Identity and Roles which was presented at ROAR2014, and covers the psychological aspect.

https://www.youtube.com/watch?v=Z2dqRmTbOvk

New shoes are coming into my life, a glaring symbol of the change my body has undertaken, shoes that I NEVER wanted to wear ... finding shoes that work with my feet and with clothes that I wear to work, skirts, dresses, pants that may still fit but were hemmed to wear with my beauties that have heels .... finding shoes that I can afford, because believe it or not, the shoes that I don't even want, are REALLY EXPENSIVE!  This is a whole other topic since I have had to shuffle my work life to accommodate my fatigue/rest and have an unreliable income.

I'll take this opportunity to say to any shoe designers out there, if you want to make alot of money .... design shoes that are supportive, comfortable, cute and affordable ... the money will come to you by the truckload!  I love my Birkenstocks, but I'm not kidding myself, they don't suit every occasion.

One thing I am doing, is slowly but surely, sorting through my closet and parting with clothing. Some people with Rheumatoid Disease have the side effect of weight loss, some don't, I don't  and I'm pissed! ..... I'm not sure if it is the biologic I am on, or not, I know I am suppose to work out, I did at the pool in a deep water conditioning class, which I loved, pilates has always been my favorite, but I can't afford it ... Alot of us are in a catch 22 here, we HAVE to work to pay our bills, and depending on our treatment and disease activity are so fatigued, that doing so uses up all our spoons.  I must rest, I don't want to, I have to!  making sure I rest enough so I can work, nevermind enjoy any leisure activities, is paramount ... working out is on the back burner for now .... so, I am trying to go through my closet, through clothes that I like, that now don't fit me, and getting them to women on our Downtown Eastside and possibly Dress for Success.  This is a tough process, because I would like to think that I may fit into these clothes again, but I am telling myself, that is not now.  

It is yet another blow and another thing that this disease is taking from us.

Rest & Lots of Fluids ??!!

As I write this, I have an incredible headache, which started when I woke up with a sore neck this morning.  I heated the naughty neck muscle and it helped, but it was followed by a headache, which brings me to the topic of this post.

 

When you're chronically ill, your body forces you to make adjustments in your life.  For alot of us, it is resting far more that we want or prefer.  For example, I have been resting even more this last week as I have been feeling a bug trying to attack me and I have been resting so that it doesn't take full hold and snowball into a whole other menu of issues, which could include not getting my infusion and flaring even more.  We cross our fingers and hope that resting will pay off, but there is a side affect (we never seem to escape those), which is what it does to us mentally.

 

I'm being good, I'm resting, theoretically good, no?  Meanwhile, my life is not happening, my house isn't getting cleaned, the recipe I wanted to try, isn't getting made, my taxes aren't getting done, I'm not socializing, I'm not exercising or getting out in some fresh air.... the toll is high. 

 

 We have to be time management experts!  We break up our chores into smaller steps, it could take me days to clean my bathroom, the whole day to do dishes and sort the kitchen because I'm doing a little bit each time I get out of my bed to go to the bathroom, or get something to drink..  We break down our tasks and frequently overdo it because we know that at some point we will be forced to stop and at least, if some of our "stuff" is done, it's not so psychologically difficult to stop.  Alot of the time, things simply DON'T get done.

 

I try not to be too hard on myself, I've learned it doesn't accomplish anything, but it doesn't mean that it's not crappy and that we don't get sick and tired of being sick and tired and feeling that it can seem very futile, because when you do good things, there should be some sort of payoff or reward .... I know there are no guarantees in life, but futility is not a state I want to live in.

 

 

WHAT ABOUT THE HALF?????

I've been thinking alot lately about the half ... you know the increments that we are asked to rate our pain or how much better or worse we are feeling.... on a scale of 1 - 10 most times.

Well, sometimes I need a half, and there is no half.  Doctors or reporting entities don't want to know about the half.  The half is important to me though!!!!!  I want my half!

The half can be everything when I'm rating my abilities, how much I've improved, or not ... it might not be a full one point increment, but it's 4.5 and that .5 is important, I know my number isn't 4 and it isn't 5, so how am I suppose to respond?  

When you're chronically ill, you are very in tune to your pain, symptoms and abilities.  You don't want to downplay anything and you don't want to exaggerate, at least I don't.  

It seems like a small thing, a half, but to us it can be everything when you are trying to relay what is going on inside your body, and your head.

Stress? What Stress?

Everyone has stress, it's a fact and it's relative.....

For the sake of this post I wanted to share how it pertains to those of us with chronic illnesses. 

I don't even know where to start ... maybe now, in my present day, when after two and a bit years since my diagnosis, my stress level is lessened.  The stress I have had has felt heavy and constricting and I'm sure has added to my sleep issues.  That being said I haven't yet connected my stress level to my disease activity, it probably has, but I haven't connected the dots to anything glaring.  I know alot of people can ....

It is such a vicious cycle with being sick = stress, treatment options and paying for them = stress, job and work issues from being sick = stress, adding to financial struggles = stress, family issues or illnesses = stress. 

I am conscious of not offering advice to others in our community on dealing with their stress, I don't feel equipped and I don't want any miscommunication or misunderstanding, so I generally steer clear of offering advice for dealing with it.  What I do try to do, is just be there for venting and support......

Stress runs like a cyclone or tornado through your life, which then switches back onto our health issues .... and there's always lots of information out there on how to deal with it, however, most of it pertains to 'well' people, and doesn't ring true for us.  It's feels like we can easily get overwhelmed, maybe we're vocal about it, maybe we're not, but it is no less STRESSFUL! 

In my reality the things that have given me only very recent relief from my stresses have been obtaining more work, which enables me to pay my bills and not go into more debt, which has been a heinous side affect of my diagnosis.  My hope is for more good to come and to dig out of the financial issues that my disease has caused .... currently, my disease is mostly managed, some days are better/worse than others, the thing I am enjoying the most and have almost a palatable appreciation for is - not worrying.  I am finding myself taking advantage of not worrying about what will happen in the near or far future, but living in this moment (hah! So cliche), the only way to describe it is NICE.  It feels odd, but I appreciate it and it feels like I'm wrapped in a cozy blanket .... it feels like I can breathe ....

Chronically Fabulous !!!!!!!

Def:  CHRONIC : continuing for a long time; constantly recurring

Def:  FABULOUS:  extremely good, almost unbelievable, astounding

I've been going through a lot lately, with other sickies in my family and some road blocks with my own treatment, so naturally I have been in my head, thinking, thinking and over analyzing, as I do .... and having just been to see Mr. T, my social worker, I emptied my brain on him.  This always helps and gives me some clarity after.

I started to wax philosophical in my head about how much I have been through in the last 2 years (almost) since my diagnosis.  I was also thinking about all the others in this online RA and Chronic Illness community that have been going through this for longer than I have.  WE ARE SERIOUSLY FABULOUS!!!!!  When you look at what we deal with medically/physiologically and emotionally, and then look at what we get done .... we are really AMAZING!!!!

As much as there is a spectrum of our dis-ease, there is such a huge spectrum of our abilities, this spectrum always changes for us and what we can accomplish on any given day.  I have also realized that there is no way that anyone who does not have a chronic illness will EVER, NEVER, EVER "get it".  That alone has been liberating for me.  I think I am finally "Embracing What Is" (shout out to Lisa Maxx!), or am beginning to.

We get things accomplished, even if it doesn't feel like it and some days, we do more than we think we can and don't even look back to give ourselves a well deserved pat on the back.  When I was diagnosed, "pacing" was and still is the most challenging thing to adapt to.  I plan my pacing .... lol ... yes I have control issues .... I plan for the worst case scenario for what needs to be done ... something that used to take me a couple of hours can take days now.  Sometimes I can surprise myself and I get ... "just one more thing" done than I planned, I know that I may have to take something for the pain after, but I desperately need to feel that I can still accomplish things.  For example, I have company coming for the weekend and I've been working 2 jobs, my apartment needed vacuuming (I usually split this task up over two or more days), I stopped at the library after work to get videos for the child that will be here and was pretty much done at that point, but this was the only time to do the majority of the vacuuming, and I knew I had to have some dinner, which I was going to do after vacuuming.  I remembered how my back usually hurts after vacuuming and realized that if I vacuumed first, I wouldn't be able to prep something to eat!!! So .... change in schedule, eat first, vacuum at nine o'clock at night ..... then meds, then bed .... and I actually squeezed in the daunting task of taking some summer items down to my storage locker to make room for my company .... that is the thing I patted myself on the back for ....

Some of us are out in the community and the world advocating, some of us are are online supporting others on the Interweb, some of us work, some don't or can't, some of us have mobility issues, some of us are running marathons - crazy but fabulous! - ... but I definitely think we are very hard on ourselves, it's easier to be, we have all sorts of disappointments and expectations coming at us ... It would be great to remember that we can all be our own hero!

The Imaginary Friend

My Give A Damn's Busted ..... I Think ....

It's either that or I have an undiagnosed personality disorder .... maybe both ....

I was driving and thinking ... as I sometimes do and as much as I've been changed in the obvious ways by RA, there are other ways in which a diagnosis changes a person.

I'd like to think I've become more tolerant, I'm definitely more compassionate.  I think it has happened out of necessity, that my BS tolerance is even lower than before.  Being diagnosed with a scary chronic illness and being on a scary treatment plan definitely changes a person.  Sayings like, "life is short" become even more magnified, more so when we hear of people in our community passing away prematurely and with an auto immune disease, you have no front line to little "bugs" that most people can cope with.  I have found that I distance myself from people when petty dramas occur or are discussed, I withdraw .... I can't even bring myself to initiate a discussion over it with them, I simply leave, physically, emotionally ... and make space between us.  I don't know if this is the "right" thing to do or not, but it's what I do.

Isolation is another thing that I know a lot of us face.  Emotional and physical isolation ... I live alone and am not in a significant relationship, but I know that it's not really a factor, it feels like it, but it's not.  Anyone who is sick would feel like this at times, I imagine.  Then there is the fact that we often turn down invitations or can't attend things at the last minute, depending on how we are feeling.  The other times, we simply don't get invited .... we are unreliable and out of sight ..... I think it definitely takes more effort to be "with us", only the true, good friends shall remain .... I have been on both sides of this situation as one of my closest friends has been battling an auto-immune disease for over twenty years ... we are still close, although we don't see each other much .... It makes me sad, but it also has me appreciating the relationships that I do have ...

 

The Imaginary Friend