Arthritic Chick to her CreakyJoints friends: “I fell apart in a huge way”

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I’ve been MIA. I know this. I have been wanting to blog and post more, because I love the CreakyJoints community.  But in the last few months I fell apart in a huge way.

Where did it begin?

It began very well!

sadACmemeI had a plan for this year.  A goal.  A new direction.  I was excited and couldn’t wait for it to begin.

‘It’ being a Certificate IV course in Photography at my local TAFE.  An entry level course in photography that articulated into a Diploma and then a Degree.  I hoped to complete the entire course.  But first, the Cert IV.

The first sign of trouble was when I realized there were more contact hours than I had realized.  I  negotiated with the staff and the Disability Education Officer and some adjustments were made to my Schedule.  Still, I had to attend three full days per week, Monday to Wednesday, 9am to 5pm with a one hour lunch break.

A little voice in my head knew I couldn’t do this.  This is NOT the voice of negativity. This IS the voice of reality.

I haven’t been able to work anywhere near those kinds of hours in years.  I can work from home, because at home I can take whatever narcotic pain relief I need. I can use heat packs as required. I can wear soft, comfortable clothing. I can sit in a chair that is set up for me and a desk that is the same.  And I can take breaks whenever I need them.  And, in this way, I can get work done.

This was going to be tough.  Old fashioned classrooms. Not even always a desk to lean on. Hard chairs.  The voice of reason was talking to me often, and started getting louder.

But on the very first day, when we did the ‘introduce yourself’ routine, I told all my teachers and fellow students that I suffer from rheumatoid arthritis.  I told everyone that I suffer from pain and fatigue, so please understand I am not bored.  I fidget and stretch and move around because I am in pain, not because I am not interested in the subject matter. Oh and it’s probably a bad idea to give me your $5,000 camera to hold, because my hands are a little dodgy.

And my fellow students and teachers were awesome!  Some were interested and asked for more information.  All were respectful, and understanding.  I felt I’d hit the jackpot.  A course that I loved that was challenging and interesting, full of people who were understanding, but who just treated my disease as another fact about me. Like I have two kids, and green eyes.  They were aware, but made no big deal.

Perfect.

So I pushed down the voice of reason. I was going to make it through this course.  It was only six months.  I could do it!

At the end of week two, I was in trouble.  My life had become this.  Get up. Sorry, drag myself up.  Watch kids get off to school on the bus.  Drive the 20 minutes to school myself.  Work hard to focus and keep up.  Come home and collapse on the couch.  Stay there until bed time, only moving to ensure my kids had access to food.

Everything else stopped.  The house was filthy.  Bills were piling up.  Everything was damage control and putting out fires.

I was in constant, severe pain.  The fatigue was incredible. I could NOT get off the couch.  My body felt leaden and dead.  My joints were swelling.  I had a constant headache, perhaps migraine, because nausea and blurred vision came along with that.  I couldn’t focus on more than one simple thing at a time.  I was breaking down horribly.

But I didn’t want to quit. I told myself it was a virus.  I upped my prednisone.  I saw my GP and asked for advice.  He was blunt with me.  He said all my extra symptoms were probably just a sign that I am pushing my body too hard.  He was caring and sympathetic, but he advised me to either drop my course load significantly, or quit the course.

I made it through another week before I collapsed completely.  I woke up one morning feeling like the usual truck had run over me, but twice this time.  And I was covered in big, dark bruises, and I hadn’t injured myself.  After another night of sweats and chills and no sleep, seeing these very visible signs of ‘something wrong’ sent me to my doctor.  He was very concerned. He didn’t like the look of those bruises at all. He took blood to check my clotting factors and some cancer markers.  If you Google ‘leukemia bruises’ that’s what I looked like.  He said it was a very small chance that ‘something nasty’ was going on, but he wanted to be sure.

Luckily all of those tests came back normal, and the bruises gradually faded.  What followed was three weeks of terrible pain.  I was so sick I couldn’t get up.  A friend came over and I couldn’t get out of bed.  I never do that.  The headache, stomach ache, diarreah, nausea, dizziness, blurred vision…I can’t even remember what else.  My body just stopped.

I had to accept that I had pushed myself too hard.  Well beyond my physical limits.

I withdrew from the course.

Devastating is too strong a word…disappointed is not strong enough.  There’s a word somewhere in between.  It was a huge emotional blow.

And I didn’t recover quickly.  For three more weeks I stayed down.  I saw my doctor several times.  I upped my prednisone again.  Nothing was helping. I wasn’t keeping food down.  I had no energy.  I literally spent all day every day lying down feeling nothing but pain.

I had a rheumy appointment and she was not impressed with the state of me.  All my extra symptoms, particularly trouble swallowing, blurred vision, balance issues, and incontinence issues let her to order a full brain and spine MRI.

There were bright spots in my brain.  Tiny, 3mm bright spots. They couldn’t tell what they were. But they were either small strokes, or early signs of demyelination. Which most likely means MS.

Ok, great. Not a good time to be dealing with extra potentially serious diagnoses.

The day my rheumy received the results she arranged for me to see a neuro.  The same day.  That meant she was pretty concerned.  She told me to stop taking all my medications immediately until we knew what was going on in my brain.

So I’m feeling as bad as I’ve ever felt and I need to stop taking medications.  OK. Great.

The neurologist wasn’t sure.  But he agreed, no meds. Take aspirin in case they are strokes. Stop my biological in case its demyelination. Even though my biological (Orencia) is not known to cause MS.  Playing it very, very safe.  My physical neuro exam was good – only a few balance issues.  He wasn’t too concerned, however.  So ultimately, it’s wait and see.  But there is something wrong with my brain.  I will have a follow up MRI in three months and see if there is any progression.

So.  In the first six weeks of my wonderful new year, that I began filled with hope and enthusiasm for a new direction, and dreams of following my passion for photography, I had already withdrawn from the course. Reached complete physical collapse, relying on friends and family to get me to these appointments.  And have a possible serious new diagnosis on the table.

This is not the way I planned it!

Then my gallbladder started playing up again. I knew I had gallstones.  I was supposed to have my gallbladder removed last year, but I couldn’t face another surgery so close to my shoulder surgery.

But now it was time to deal with that.

The surgery went well, the aftermath not so much.  Several complications, including pneumonia, a collapsed lung, and pancreatitis. More hospital time.

The swallowing issues became worse.  I can’t eat solid food anymore. Solid food gets lodged in my throat, and my throat clamps shut.  It really, really hurts.  So I’m eating soggy wheatbix and mushy vegetables mainly.

And I have gained nearly 10 kgs.  This would seem impossible, considering what I am eating. Or not eating, as the case may be. But there you go. My body makes it’s own rules.

The fatigue is rising again. The dizziness, the blurred vision.  The headache never ends.

Yesterday I saw my neurologist again for my follow up.  His diagnosis?  Cerebral vasculitis.  So I need another MRI to check for progression and an MRA to examine the blood vessels in my brain.

Cerebral vasculitis as a complication of rheumatoid arthritis is very rare.  But it can be very serious.  As in drop dead kind of serious.

So now I have to admit depression is taking hold.

I am tired.  I feel very alone.  And I am scared.

This year held such promise.  But instead it has been nothing but surgeries and procedures and more and more scary diagnoses.

So that’s the first four months of my year.  And that’s just the medical stuff.  The other mechanics of life threw up their own problems, ex-husband, friends, family, kids, money.  That stuff is always there to worry about.

As I said, NOT the way I planned it.

I have learned that no amount of positive thinking can make this body do more than it is capable of. And that it is not capable of that much anymore.

One of the main reasons I wanted to attend ‘in person’ classes was for the social contact.  I get lonely. I am isolated. Those three weeks of mixing with a huge variety of people  (young people, 18, just out of school, right up to retirees in their 60s) was magic.  Mine was just another story, and we were all bonded by a common passion to learn and be better photographers.

It was bliss.  I will miss that.  No online course can replicate that.  However I have to be realistic. I tried.  I’m glad I tried. I didn’t fail, but once again, my body failed me.

My body broke down completely because I didn’t heed the signs that I wasn’t coping with the physical demands.  Lesson learned.  I wanted it that badly.  But pushing through caused nothing  short of a catastrophic chain reaction to total collapse.

So now I rest more.  And I will write more.  And find a way to accept the way things are.  I am having trouble with that right now.  I am having a ‘what did I do to deserve this?’ moment.

But like everything else, this too shall pass.


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7 Comments

  1. I have MS. But, I’ve subscribed anyway. Your story highlights so many things that I and others with these chronic conditions experience. Thanks you for sharing and It means a lot to me?

  2. Gibber says:

    I just wanted to show you some support. I’m still in the process of trying to get a diagnosis. I suspect despite tests that I may have RA. I’m sorry you went through so much. When you are able keep taking pics even if you can’t go to school.

    My heart goes out to you.

    • Thanks for your kind thoughts Carrie. I’m sorry you’re going through the diagnosis process – it can be very difficult, especially if your intial tests are clear. While I hope you don’t have RA, it sounds like you’re pretty sure. Keep pushing your doctors to get the treatment you need. You know your body better than anyone. Stay strong and good luck :).

      And I went out and took a few pics of the sunset tonight. I’ll take my pics whenever I can. It was a better day :)

  3. Kelly Gorz says:

    I am so sorry to hear this. I started my Master’s degree 3 years ago just as my first symptoms started popping up. I recently started my thesis over because I couldn’t physically complete the field work I needed for my last one. I so get the frustration, the need to push on even when it’s destroying you, and the impatience that comes along with self-care! Big, BIG hugs to you!

    I’m sorry I don’t know much about your story, but I just wanted to make sure your docs have ruled out Neuro-Behcet’s. I was under treatment for RA and PSA the last 2 years but it turned out I have Behcet’s…this was only discovered due to a random comment I made in my rhuemmy’s office. I really don’t mean to add to the whole “Have you thought of this” thing we get ALL THE TIME from people, I just thought I’d mention it.

    But most of all, I wanted to offer my support to keep looking forward and to remind you that you are more than your body, even if it doesn’t feel that way sometimes! HUGS!

  4. I am so sorry to read of all your new medical issues. Know one knows better what this is all like except those of us who go through it. I totally get how pushing through winds up costing us in the end, I went through this very thing this last fall when my Father was ill and subsequently passed away. Somehow I managed to be well enough help care for him and be there for him as he was dying and bury him, but my god how it all came crashing down on me the day after his funeral. Was in a flare up from October – March, my medications had to be changed as they stopped working and now doing physical therapy to try and regain some strength. It’s tough to be chronically ill but somehow we manage to get through it all and I know you will too. Hang in there and I wish you better health and much happiness.

  5. Deb Adams says:

    I have been following you for some time now. You are my favorite because you’re so real. I won’t talk about my issues, because I want to tell you about how much you have helped me when I’ve felt like giving up. Your realism and “this shit is not going to control who I am” attitude has helped me kicked myself in the pants and get off my pity wagon. Thank you for that. Your blog has helped more people than you will ever know and I have been praying for you when I read that you were down and out. Here’s a major hug from all who care.

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