Rheumatoid Arthritis and why aren’t I coping lately?

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over-thinkingI’ve been wondering why I have been feeling so emotional lately. Why I haven’t been coping so well. Why I have been feeling angry and sad more often than not.   I’ve been trying to figure it out…is it meds?  Orencia is new, is it a side effect? Am I taking too many pain killers?  Or not enough pain killers?  Am I not getting enough exercise? (not that I can control that right now).  Am I eating too much junk food?  I’ve been buying more processed foods to make life easier, when usually I eat mostly fresh fruit and vegetables and lean meats.  Could food really have that big an effect?  Clutching at straws, most definately…But why am I struggling so much?  I normally manage to remain fairly positive (no one can smile all the time…that’s just unnatural!).  So I’ve been looking for answers, in all the wrong places.  Overthinking everything.

So let’s stop and think.

I have RA that is totally out of control right now.  Last week was one of the worst of my life.  While I managed to stay pretty chirpy throughout most of last week, it had a big impact.  The pain was incredible.  And constant.  It did not let up without large doses of narcotics, which made me so sleepy I could only lie down anyway.  My life completely stopped for the week.

It made me realise that I really am incapable of holding down a job.  Had I been working last week, I would not have been able to do anything.  Not even answer an email sensibly.  I would have missed deadlines. I would have let people down.  I may have been fired even.

I’ve been kidding myself.  I have knock down flares that last up to four days at least once a month.  And I still have at least one or two ‘severe’ days a week.  I take slow release morphine and oxycodone daily.  And yet I’ve been telling myself that I’m still capable of working. That I’m still useful, professionally speaking.  This is just not true.  And I only really accepted that this week.  Ouch.

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Not only is work an essential part of my identity, it is the only means by which I can improve my financial situation.  Which leads me to the fact that I am under extreme financial pressure right now.  Well, always really.  Since my husband I and split, I have a bunch of assets and a very small income.  My assets are mostly tied up in my house, which I don’t want to lose.  My kids love living here.  I love living here.  It’s a nice house, albeit a bit run down.  But more importantly, it’s my home. Our home.  I may have to sell it.  I will do everything within my power to prevent that happening. Even ask my parents for help

Absolute killer for my pride.   I’ve been financially independent of them since I was 18.  I’ve never needed help. I have always managed.  I’ve always sorted my own problems out.  But right now I’ve been hit with several bills that I just can’t pay.  Some of them are medical.  Some of them were predictable, and I should have been better prepared. But I have been playing catch-up since I needed three expensive MRIs earlier in the year.  Well, I thought I needed them.  Really they were luxuries.  The MRIs just confirmed what I already knew.  But I wanted confirmation.  I need surgery on my shoulder, but I can’t afford that, so really it was a pointless exercise.  So yesterday I cancelled a bunch of appointments that I just can’t afford.  I have to prioritise.  All of them are necessary, really.  But some can be delayed.  My back pain has been severe lately, so the one that I will keep is the cortisone injection into my lumbar spine.  That has the potential for immediate and complete pain relief.  It’s the most important. My hips and SI joints flare periodically, so they can wait.  I postponed the pain management specialist, and the GP check.  I cancelled the paediatrician appointment for my son.  He refuses to go, so I’m not spending $80 on an appointment where he will literally refuse to listen and stand in the corner facing the wall in silent protest.

About my son:   He has Asperger’s Syndrome.  He is under a lot of pressure at school.  He manages to get through the day, but it comes out as soon as he gets home, with tantrums and anger and depression. He takes it out on me.  He takes it out on his sister.  He breaks things, he yells, he is rude and nasty.  We are working on better ways for him to manage and release his stress.  I have been ‘bootcamping’ him regularly – giving him hard exercise (combined weights and cardio) to work off steam.  But since my last mega-flare, it’s been about three weeks since our last bootcamp session.  I feel bad about that, but again, I can’t control it.  He requires a lot of support.  Right now, his behaviour is very challenging.

On to my daughter.  She is being bullied at school and has developed an anxiety disorder around her health. Every insect bite, every rash, every ache in her body, she believes she has contracted some deadly disease.  Google is NOT her friend.  I am constantly reassuring her, and she is seeing a psychologist.

I am not over-reacting.  Her science teacher phoned me because he’s very concerned about her.  She is terrified of the chemicals she needs to use to perform the practical elements of the course, and has had an anxiety attack during science class.  He saw her in great distress, and luckily he is a genuinely caring teacher.  He supported her and removed her from the situation with as few people noticing as possible.  He was afraid she would be bullied from that incident alone.  He gives her extra safety equipment, gloves, glasses, to try and reassure her.  But he was more concerned about her anxiety and wanted to be sure that I was aware that it is very real, and needs addressing by a professional.  I assured him she is seeing a psychologist and he said that was what he would recommend.  I really appreciated his call, because it’s hard to know with a twelve year old girl who has always had a penchant for drama just how serious a problem is.  Other people seeing and being concerned about her behaviour, particularly someone who deals with kids her age every day, confirms I am doing the right thing by taking her to a psych.  It helps to have that support. I need that support as well.  It is an essential expense.

Which brings me to me.  Being alone.   There is no one who comes home every evening and takes a shift with the kids.  No one to talk these things through with.  I talk to my ex-husband daily, and of course I tell him what’s going on.  But it’s just that. I tell him what I’m doing, what the kids are doing, and what I am doing about it.  He is not here dealing with it.  It’s not the same as having a partner to work through problems with.  To talk it through, to discuss options, to make a joint decision. I take responsibility for everything, on my own.  I always have, even when we were still together.  We have been separated for three years, but I have been alone for far longer.

There are other things.  I applied for my Total and Permanent Disability Insurance 9 months ago. Even though severe Rheumatoid Arthritis is an accepted condition (read: a gimme) it’s an adversarial process. They drag their feet in the hope that I will give up or drop dead.  They are trying to prove that I do not have RA, even though I have several doctors attesting to that fact.  They now have me on a date technicality, and the whole process is starting from scratch.  Nine months down, and we start over.  But I will NOT give up.  The time will pass anyway.  It is an intensely stressful process however.

Because this process is taking so long I have applied for early access to my superannuation.  This process is simpler, because it is essentially my money that I am trying to access, although unfortunately it is not a very large sum.  It will certainly help, however.  But still, it’s a drawn out process.  I am to be assessed by a doctor in two weeks and then a psychiatrist two weeks after that.  And then the trustees will decide if I am truly permanently disabled.  And then it will take a few more months for the administrative process to be completed.  Again, adversarial.  People trying to prove I am not sick, but lazy.  We all know how much I LOVE people telling me I’m just lazy, with a low pain tolerance.

But the fact is, I have a lot of factors working against me. I am seronegative.  I have a very positive attitude for the most part.  No matter the pain, I usually have a smile on my face.  I exercise as much as possible, again through considerable pain.  And I really do NOT look sick.  I know most of us don’t look sick.  But I’m 5’10” and a large, muscular build.  Years of training in the gym, in martial arts, and in yoga/pilates have given me a toned, strong appearance, even if I am overweight.  I have broader shoulders than most men.  I am very much hoping for a malar rash and inflamed eyes at least on the day I see the insurance company’s doctors.

Oh, and the internet has been down.  Final insult!  It’s disturbing how often I consult with google or just check my facebook feed.  But I also do free online courses to keep my brain engaged. I read news.   I don’t do well when I have nothing to do.  Not having a job is incredibly difficult for me.  I underestimated how important work was to my self-esteem when I decided to close down my freelancing web development business.  I wasn’t making much money and I was constantly being ripped off.  But I felt like I had a purpose.  Now I feel very aimless… pointless even.  Every day is the same and I achieve nothing of real value.  So I am going to sign up for a more long term study program.  I need a goal, something to work towards.  Of course it needs to be self-paced, and online.  So I need the internet!  There is a fault somewhere, and I will be charged to have it fixed.  Another essential expense.

There are other issues.  But isn’t that enough?  Isn’t that enough for any person to be feeling overwhelmed?

I think so.  I think it’s quite justifiable that I am cranky, and stressed.  So no more overthinking!  No more trying to blame external things.  It’s just the way my life is right now. Frankly it’s the way my life has been for years.  And it’s understandable that I’m not coping all that well.

In fact the question should not be ‘why am I not coping so well anymore’.  It should be how in the world did I cope so well for so long?

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4 COMMENTS

  1. ~hugs~ <3
    My heart goes out to you.
    Having RA and living with it is hard.
    It can be overwhelming.
    Just know you aren't Alone in this fight, because it is a "Battle" we fight daily.
    I wish I could make things better.
    Please know that others do know the struggles you are facing and Care.

  2. Hi, it just sucks hey 🙁 I was in denial about the employment too. for years.I’ve had RA since 1992, and gave up nursing in 96. still it was only about 4 years ago,I admitted i would never be able to go back. it bites.I too do courses.I was lucky to be approved for DSP in 1999. have had to downsize our home and move to the country to keep paying a mortgage. country living is so much cheaper. I’ve been the same flare wise, have been wonderful, to a point.infection causes a flare, time off them and then recommence they never work the same again. Just had first infusion of orencia. flared ever since. popped some pred, have stopped now, and it seems to have done the trick,gave it a boost so to speak, so hopefully it sticks. Hang in there,its goddam hard with kids to manage as well, and kids with problems to boot,I’d be in a quivering heap i think. You are coping as best you can, and though you are venting and cranky it sounds like you are getting through.I can only imagine the loneliness without the partner to bounce off though 🙁 Take some time out for yourself if you can, get their dad to take them an extra day and just veg if you don’t feel like going out. I know sometimes even if we have the means to get out ,we just. don’t.feel.like.it…sigh. those times i read,or spend all day on the internet…because I can 🙂 good luck to you. if you ever want a chat,just email me 🙂

    • Thanks Bernadette. You’re right, sometimes even when I can physically get out, I just don’t have the energy. I did spend the weekend just gone enjoying my own company (kids with their Dad) and veging a LOT! It was essential mental and emotional recovery 🙂

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