RA Blog week 2018 – Tips! Living your best life with RA

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It’s Day 2 of RA Blog Week.  Today’s prompt is:

Tips – How do you stay fit, cope with stress, relax, or capitalize on a great day. Tell us your secrets for the best life possible.

Firstly I think the most important thing that RA has taught me is :

Don’t sweat the small stuff!

It’s my mantra and I spruik it loud and often.

Sometimes when I spend time with people, I am amazed at what they spend their energy on. (Of course, I don’t tell them that!)  I just don’t have energy to spare, in fact I’m running at a constant energy deficit, so I only worry about things that I can do something about.  Worry itself is a pointless exercise, but constructive worry, looking for solutions, is something else.  I tackle problems head on, or I accept that its something I can’t change.  And I’m far happier for it.

I am firm about what I need.  It took me a very long time to be able to do this, but people often think they know better than I do what I need, what I should or shouldn’t be doing and best of all, how to ‘cure’ me.  So now I stand firm. I let people speak but I mostly ignore their ‘advice’.  They generally know very little about me or my life. Sometimes I explain, sometimes there’s no point. But I do not let it get me down anymore.

Last week a friend came over for a visit. We were supposed to go out for lunch, but I was in too much pain. I told her we could postpone, or she was welcome to come over.  She did. But, she came with the intention of dragging me to lunch.  In the past I would have buckled under her pressure and been dragged out to not eat an expensive lunch that I couldn’t enjoy, being in too much pain to enjoy anything.  I would have done that to make her feel better.  But no more.  I stood firm.  I told her repeatedly I am not well enough to go out. Here at home I can take more pain medications, because I don’t have to drive. I have my heat packs and my heated throw.  I can wear tracky-dax and I don’t have to keep my ‘face’ on.  She heard me, but I don’t think she listened. She does this all the time, and I’m tired of it.  I will no longer pursue this friendship because it causes me more stress than happiness.  I have learned to be ruthless.  And I am very comfortable alone. I only have 2-4 functional hours a day, and I am no longer going to give them to people who actively refuse to understand me and my limitations.  Or people who take and don’t want to give back.

I am very picky about friendships. I used to give a lot of myself, far too much, to people who wouldn’t spit on me if I were on fire.  I was taught very brutally that most of the people in my life were only there so that I could listen to their problems and give them support. Now I focus more on professional advocacy, a big step removed from the one on one interactions that used to take up a lot of my time and energy.  The people who are in my life are very special people.  I don’t have the energy or the time for demanding people or draining relationships.

I choose to be grateful.  I choose to focus on what I have, not on what I’ve lost.  On what I can still do, not on what I can’t.  On what I can give, not on what has been taken.

I try not to let my world revolve around illness, but to be honest, that’s difficult.  My illness does control me, there is no way around that. I tend to average three medical appointments a week, and every choice, from what I wear to what I can eat is dependent on my disease.  So, when people tell me ‘not to live my disease’ they might get an eye roll. I have no choice. BUT I don’t spend any more time focussing on disease than I have to.  I document a lot of things on my blog. I don’t see it as complaining, I see it as educating.  Showing the healthy world what its like to live with multiple, painful conditions.  I don’t talk about it much in the real world, only when people ask specific questions.

I live in the present moment. I don’t dwell on the past, nor do I worry about a future that hasn’t happened yet.

 

 

 

I take my medications.  As prescribed.

I educate myself.  I understand what my medications are and what they are for. I know the difference between a DMARD and a bDMARD and a nsaid and a corticosteroid and a simple analgesic and an opioid.  I know the risks and benefits of each, but I am not paralysed by fear of rare side effects.  I have learned a lot about inflammatory arthritis, and the potential effects.  I know when a new symptom is something potentially serious, and when its likely to be trivial.  I don’t panic.  I research from reputable sources.

I don’t let pain get out of control. I take pain medications, I rest when I need to, I move when I need to.  I am very firm if people tell me to ‘push through’ or tell me that you shouldn’t be taking ‘those medications’.  I trust myself, I know my body and my disease better than anyone, and I know my limitations.

I exercise.  Outside of taking medication, exercise is the single most important thing I can do to improve my quality of life and extend my lifespan.  Yes, it hurts.  Yes, I do it anyway.  Short term pain for long term gain.

I rest.  I used to allow myself to be bullied into doing things when I was too ill or in too much pain.  Some days even just socialising at home is too much. The pain is too great, and I don’t necessarily want people to see me that way. I have learned from past experience that some people will judge, no matter what I do. So, I when I need to rest, I say so. And I stand firm.

I use life hacks!  I have loads of tools to help with day to day stuff. Obviously, there’s my wheelchair and crutches.  I have a long handled reacher and long handled sponges to clean with.  I have a Roomba robot vacuum cleaner and a cordless vacuum that is light and easy to use.  I have lots of kitchen tools, an electric can opener, an electric jar opener, I have a thermoknockoff that cooks a lot of things with little help from me, I use my pressure cooker and slow cooker regularly to cook healthy meals.

I keep track of everything on my phone. My calendar, the kids school hours, work hours, medical appointments, gym classes, everything. If it’s not in my phone, I will forget it.  So, I put it all in there in an app that reminds me when tasks are due.

I eat healthy.  I live on a very restrictive diet due to multiple food allergies so I cook meals from scratch rather than buying processed food.  I buy a lot of vegetables pre-cut or use frozen or tinned vegetables.  I use lots of herbs and spices for flavour, I have to use jarred garlic and ginger rather than prepping my own.  I pre-make meals and stock the freezer so there are almost always healthy options available.

I drink lots of water.  Just because.

I take care of my mental health. I see a psychologist regularly.  I meditate. I am mindful.  I forgive (mostly…there are some things that are unforgivable).  I don’t hold grudges. I don’t ruminate on the past. I don’t wonder what might have been, if only I’d done a-b-c.  I don’t fret over things I can’t change.

 

I laugh. Loud and often!  Seeing the funny side has gotten me through a lot of difficult situations.

I don’t tell other people how to live their lives. I really hate it when people do that to me, so I don’t do that to others. These things work for me, maybe some of them will work for you too.  We’re all very different, different people with different levels of disease with different degrees of support with different demands placed upon us.

Do what works for you and give yourself credit for living well with a painful, misunderstood disease.

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