“Winter is coming!” if you’re a GoT fan, this may mean a little more to you, but even if you’re not, I’m quite serious – winter is coming and if you’re like me, your joints are already letting you know it’s starting to get colder. Having an autoimmune disease winter is usually an interesting time, to say the least. In this post, I want to share some tips on how to keep warm and pain-free this winter.

Warm Bath

Ok, so it doesn’t get too cold, snow is probably the last thing that could happen when it’s winter here in Brisbane, but it does get cold, especially for a person with an autoimmune disease like polyarteritis nodosa. One of the best things ever invented to help warm up cold muscles, aching joints and overall exhausted bodies is a warm bath! If you don’t have a bathtub, don’t despair, you can still warm up with a hot foot spa (fill your foot spa and basic basin and stick your feet in!). This can help you raise your core temperature and signal to your body to relax.

• • • Make a Muscle Relaxing Detox Bath. Add some Epsom salts (about a small handful); some pure essential oils like peppermint or lavender (25-35 drops); 2 teabags of your favourite tea (open up and sprinkle contents in the bath; you can rinse after); and a small capful of Olive Oil (this makes the tub slippery so be cautious, the oil acts as a skin cleanser and moisturizer). Then mix it all together until you’re ready to get in. Try to let your body soak for 15-30 minutes.
    • Apple Cider Vinegar Bath. Bathing in apple cider vinegar can help reduce the symptoms of pain and arthritis. It also aids the mobility of the joints greatly as it reduces the excess uric acid build up in the body. Just add 1 to 2 cups of apple cider vinegar to a warm or hot bath and soak for up to 30 minutes. Make sure to drink lots of water before and after your bath.

Avoid alcohol and drink more water instead

Alcohol causes blood to rush towards your skin, lowering your core temperature. It also keeps your body from shivering, which is a key part of how you stay warm. Drink as much water as possible because if you’re dehydrated, your body will send the fluids you do have to essential organs like your heart and brain, instead of your fingers and toes. For people with poor circulation from conditions like diabetes and Raynaud’s Disease, that lack of blood flow can worsen hand and foot pain.

Keep Moving

Arthritis can affect people at any time throughout the year, but the winter and wet weather months can make it even harder to manage symptoms. The cold and damp weather affects those living with arthritis as climate can create increased pain to joints whilst changes also occur to exercise routines. We have an instinct during winter to hibernate; however, a lack of physical activity will cause joints to become stiff.  Exercise eases arthritis pain. It increases strength and flexibility, reduces joint pain, and helps combat fatigue. To manage arthritic conditions during the cooler months, individuals need to plan physical activities that are easy to do during winter, such as:

• Walking indoors, such as around shopping centres
• Household chores, like vacuuming
• Playing with children
• Swimming indoors, such as Hydrotherapy 
• Taking an aerobics or yoga class
• Listening to music and dancing
• Using the stairs instead of the elevator
• Stretching or doing light exercises while watching TV

P.S How cool would it be to have a heated, indoor infinity pool?

 

Have you got some more tips to keep warm and pain-free this winter? Share them below.

 

Edited by Gisella Butler-Colot

Preface

Short stories are made to make you think.

There might be no resolution, an ambiguous ending.

But isn’t life like that?

Try as we may, we try our best to give ourselves our own resolutions in life.

But maybe by looking back on those details we see the answers to our questions, we create the resolution we needed which we didn’t notice before.

“The evidence is in the details” as any detective might say.

In this collection of short stories you’ll see a glimpse of what it’s like having a medical condition and how it can define your life.

It’s up to you whether the definition is a positive one or not.

(Note: this is just the first story in the collection – these stories were written at different times as part of my coping diary)

Short Story I: See you next month Mr Reed

“This could have been prevented” smiles the doctor.

I smile back, I wonder if it reaches my eyes.

They say the eyes are the window to the soul but what if I’m soulless?

There’s nothing left to give, to show.

I’m burned out.

“Mr Reed, did you hear me? This could have been prevented you know…if you had only…” she continues but I’ve drowned her out by now.

She’s probably repeating that I should have done this or that.

How can they do that?

Reduce years of suffering down to one statement: “this could have been prevented” like that makes it fucking better?

Like I could just turn back the time and none of this would have happened.

Really? Or would it just be a couple of years less stuck in this limbo for what I now call life.

The strongest trait in a person to me is the ability to hide.

Hide what’s going on the inside.

Because who likes a moment of weakness?

Socially accepted vocal diarrhea is not my cup of tea.

Sure, everyone says it’s better to let things out.

But if everyone were to do that?

Let out their feelings periodically to then float out there like toxic waste but no answer as to how to really deal with it.

Do you really think I want to know your deepest, darkest thoughts?

Sounds harsh but I’m human, I don’t really want to know.

I don’t want to judge you.

So don’t tell me.

Because who says anyone else really understands?

We’re all different, I agree with that.

I’m sitting in the white room again.

They’re all so deceiving.

Well, maybe not all.

But for the most part, they’re part of the system.

She’s a drug pusher, clear and simple.

She does it every day.

Her shoes have been recently polished.

I wonder when she had the time to do that since I’ve been in the waiting room for well over an hour.

How do I get out? How do I get out?

I’m 36, almost 2 decades since I’ve been locked in.

How does it feel? I wonder staring at her.

She knows nothing of what it’s like.

To be on the inside.

To have it on the inside.

I was 17 when it started.

That was the first time I met her.

She’s been my first of many dealers but I always go back to her.

Drugs I never knew existed changed my life.

It was great for a time.

Then weeks turned to years and I was flying through stages without even noticing the details.

My kidneys gave in first.

When had she stopped caring? Had she ever cared?

“I see you’re doing well Mr Reed with my recommendations”

Does having pain all over my body, putrid breath after brushing my teeth 10 times this morning and my pale skin covered in bruises, count as doing well?

“I’d like to try you on something new…”

Here we go, does she know what she’s doing? Get me out! I plead silently.

“That sounds…great. What could help my…symptoms?”

She looks pensively at my chart; I try to see her notes.

She does that a lot.

Doodle, I mean.

Does she think I don’t see?

I wonder how much longer I’ve got.

It’s a Thursday, she’s probably got a Pilates class at one.

Like I said, I had already been waiting room for an hour.

Her pearly, white teeth shine back at me.

I wonder if she’ll even come in this afternoon.

“Lyrica for the neuropathic pain in your legs, sibellium for the migraines, Omeprazole for your stomach lining, stilnox so you can sleep…of course on top of the prednisone…” her voice drolls on, “now there is a chance of hallucinations, mood swings, appetite increase…”

She reads aloud as if she’s reciting the alphabet.

Does she even know how much these drugs will harm me?

I mean really know, not just what the text says but what it feels like.

In the beginning she might have started out to help people, to be a healer.

I want to believe this.

But somewhere along the line she forgot.

That her patients were people.

She forgot to actually look at them.

Not diagnose them from a bunch of tests.

But diagnose them as person?

To truly see them, their hopes, their dreams…but that would take responsibility, compassion.

It’s like the stray cat you find on the road side, you can’t name them because that would mean you would have to take them.

Take them into your heart.

Side Effects

Did I ever tell you I wanted to get married?

I know, I know old bridges once crossed.

I was 25, only a few years into the recovery that I’m still waiting for.

Her name was Stephanie.

It was my fault.

The first few years were the hardest, the drugs had rendered me impotent.

“There is a slight chance of side effects” was what they told me.

Side effects.

Not being a father, a husband to Stephanie who had wanted children so bad for most of her life.

An end note.

The notes they write at the bottom of the prescription in the smallest font size possible that one can still read – that’s what had ended my one and only true relationship of my life.

It didn’t happen instantly, no that would have been a discredit to her.

Stephanie would have stuck by me.

I’m sure of it.

But I couldn’t do that to her.

What could I tell her? How?

Would we be sitting in our favourite booth by Skyways road?

It’s near the park.

Families go there.

It’s the place we used to go to plan our future and talk about what our family would be like.

Would I sit there, hold her hand and tell her, ‘by the way, because of some side effects I can no longer be the man for you’?

I should change that. ‘I can no longer be the man I want to be for you’.

Side effects.

My life so far has come down to those two words.

They weren’t the only ones.

I lost most of my hair when I was 29.

I’m surprised I’ve lasted this long.

There are so many like me.

People who are sick but not sick enough to die.

In limbo.

Wanting more.

Needing more.

Losing more.

We’re all plugged into a machine.

It keeps us alive.

But we don’t live life.

The drugs go in and out of me, I don’t know what they are any more or what they do.

Til Next Time

It’s been a month since I’ve seen her.

Dr. Monroe.

I’m her biggest prize.

That sounds facetious.

But it’s true.

She’s told me that to my face.

You’re such an interesting case…I’ve been prodded at, ogled at, laughed at, and cried at.

They were all doctors.

Newbies, interns, specialists and people who liked to call themselves part of the medical practice.

Practice.

Was I just part of their practice time?

“Alright, it’s that time of the month, roll up your sleeves”

Nurse Cartwright walks in.

I overcame my fear of needles in the first year of my recovery.

There wasn’t a choice not to really.

Weekly shots do that to you.

At least I’m only down to once a month in these years.

“There we are, see you next month Mr. Reed”

Authors note:

Sometimes we need to speak out. In Mr. Reed’s story, we are asked how much of his own inability to speak or question influenced his life’s choices. Is he a victim of his own thoughts, circumstances or of society? Or is it a mixture of all? Would things have been different if he had a different mindset? If he felt he had another choice, an alternative pathway, would he have opened up and changed his story? His opinions on the medical system aren’t all untrue; they’re just another way of looking at them – perception and experience – two very different things when they occur for different people.

*Eeeks* I think I have the death grip on my husband’s hands.“Don’t look,” he says.I may have brown skin, but if you were to see me I’m sure I’d look deathly pale.“You’ve got tiny veins,” says the lady. She swaps to the other arm. There are 3 tiny holes now on my arm. Great.You’d think someone was draining my blood ala vampire style by my antics.I should probably be used to this.I’ve only done this like a hundred times.And I am.Over it, that is.Kind of.Last time’s “experience” brought back my anxiety. I was jabbed a little too many times and it left a bruise not only on my arm but obviously my mental health lol.I’m sure you’ve guessed it from my less than stellar pun in the title – I was getting a blood test.While I don’t cry, scream or bite (yes, I said bite) like I used to as a child, my fear of needles has always been in the back of my head. But that’s not to say that fear stops me from getting jabbed once a month. In fact, I welcome it.That anxiety, rush of nerves, makes me feel alive and I know it’s for a good cause.But after last time’s experience I can’t help but wonder – how come sometimes I can get tests done that are pretty much painless, a little prick doesn’t hurt, and then other times it feels like a steel plate in my arm and I can’t move it for days. Did I do something different? What makes it easier for both the person drawing the blood and the one giving the blood? Are there tips for getting blood tests out there?

Comfy ways to draw blood tips

In this week’s blog post I set out to find out the answers, crowd-sourcing as you might say. From online friends comments to in-person conversations with regular blood givers, here’s what we found works (and there are TONS of ideas as you can see below):

• Keep hydrated. Drink lots of water before the blood test, it makes your veins more plump and accessible = minimally painless blood tests < pretty much every person I talked to mentioned this
• Keep distracted. Listen to music with your headphone and favorite song while they take blood – it’ll take your mind off things
• Keep the blood flowing.
  • 1) Hold a cold and/or hot compress for 30mins before the test. You can also hold a compressed pack in your hand while getting the test done. Both hot/cold gets the blood flowing.
  • 2) Engage in light exercise before. It helps your blood warm up and pumping. For example, park as far away as possible from the pathology, and then walk briskly to get there.
  • 3) Being warm increases your blood circulation, which makes it easier for the phlebotomist to find a vein. While you are waiting, you may want to leave your coat or sweater on and let your arm dangle down to increase the blood pressure in the veins. If your blood is difficult to draw, lie down and warm your hands under a heating pad or blanket
• Know yourself. After getting a few tests, ask the person doing the test which vein was easiest for them to get blood from. You’ll also learn which arm you prefer and feel most comfortable with < personally, I prefer to use my left arm for blood tests, and guide them first to the cephalic vein or the outer arm vein.
• Remember to breathe and stay positive. Going in with so much tension, tenses you arms too and makes blood harder to flow if things don’t go easy the first time try to relax and keep your humor about you
• Be honest
  • 1) Let the person know ahead of time that your veins are difficult, and if you have any fears. Unfortunately, some people think that they are better at this than they are. Also, try to get your blood drawn by an actual lab technician, they draw blood all day long that is their job, rather than a normal nurse< I’ve also found that if you’re like me and take medicine like aspiring (blood flows really easily) vs prednisone (after taking it long term it can also make bruising easier and veins can collapse/get blown easier) so this is something for both the technician and yourself to be aware of – the kinds of medicine you take.
  • 2) If you are nervous, scared of blood tests or have a tendency to feel woozy or faint, tell the phlebotomist before you begin. Your blood can be drawn while you are lying down, which will help you avoid fainting and injuring yourself. If, at any time, you feel faint or lightheaded, tell the phlebotomist or someone nearby. Putting your head between your knees or lying down should make you feel better soon.
  • 3) Ask for someone else if the person drawing your blood isn’t successful after two tries for finding a good vein in your arm to draw from, it’s fine to ask another nurse or the phlebotomist to try. Don’t allow yourself to be turned into a pincushion for an inexperienced practitioner or someone who is struggling to find a vein to use.
• If you have small and deep veins, request a butterfly needle. Ask the lab technician if it is possible to use this if they did not already choose this. These are smaller needles that have rubber tubes in between the needle and the collection vial. These are great not just because the needle is smaller, but because the rubber tube in between the needle and the vial means that when the nurse needs to change vial (I usually fill 5-6 vials each blood test time) the rubber absorbs the motion and the needle doesn’t jiggle in your arm.
• Know your angles. Sometimes certain angles hope your veins to pop out more so perhaps putting them on top of a pillow
• Pump that blood.
  • 1) With a squishy ball in your hand, you can help get the blood pumping and ready to be drawn by squeezing the ball repeatedly until blood has been drawn
  • 2) Pump your hand several times before the stick. If the actual stick hurts, ask if they have “cold spray” or “j-tip”
• Look away. Don’t look at the needle, and don’t watch it being inserted. It’s better to not look.
• Be aware if it’s around that time of the month ladies. It usually hurts more if your blood test is the week before your period.
• At the end always thank the person if they do a good and painless job, it makes everyone feel better. Remember that person’s name too, they might become your regular go-to person for blood tests.
• Afterward, avoid using the arm that the blood was drawn from. Do not lift anything heavy with this arm too.

I hope these tips help you as much as they have helped me and my friends.Want to share your blood test experiences? Comment below, or join on the conversation on my Autoimmune facebook page. Remember it’s okay to be afraid, let’s do things afraid together. Smiles and hugs, Cami xo