RA Blog week – Tips and tricks

Today’s prompt:  Tips and tricks – What are the ways you have learned to work around the physical difficulties and limitations of your autoimmune condition.

For me, every day is a flare day. I have the kind of RA that is always active, always ‘on’.  My whole life is about managing a flare, managing pain and fatigue, it’s only the severity that varies.

I have a range of strategies and tools for adapting and coping.  Good ones and bad ones.  I’m on my own. No partner to help, and no family near by. Two teens who do their best, but they’re teens.  So pretty much everything is up to me.

First of all, medication. I take daily oxycodone, and I have learned to recognise when I wake whether it’s a 20mg morning, or whether I can try to get away with 10mg. I try to take the lowest dose that will make my pain manageable, and I have a range of prescriptions in different doses to manage pain.

My heated throw is my constant companion. On the worst days, I just lie on the couch with it over me. On more functional days I turn it on and wrap it around my deepest aches to soothe the pain a little. Ditto for heat packs.  Sometimes I use ice packs, when I have really hot, inflamed joints.  My hands often do better with ice packs, my back likes heat.  I use both at different times. I’ve had a heat pack strapped to my back, and two icepacks on my knees.  Looks funny, but whatever works.

I have compression gloves for my hands, they help when my hands are swollen. I also have braces and supports for my wrists, knees, elbows, ankles and lumbar spine.  I wear these under my clothes sometimes and almost always at gym.

I have tools that help.  A couple of those ‘reacher’ things to pick things up I can’t reach. I have tools to help me open jars and a very cool can opener, and a lever that opens those ring-pull cans.  One of the best things is a little rubberised matt (hand sized) that allows me to grip jar lids and bottles and open them more easily.  I love that thing!

I have long handled sponges and scrubbing brushes to help me shower and clean myself. I have a shower chair for the days when standing up for long enough to take a shower is just not going to happen.  I have rails and hand grips in strategic places, I replaced all the door knobs in the house with lever handles that I can push down, rather than needing to grip the knob, and I replaced the taps with lever style mixer taps.

Ofcourse I have a wheelchair with a power assist.  I use it in the house when my lower body is a mess but my upper body is working OK, and it allows me to get around the shops. I can’t walk more than about 50 metres before my hips lock up.  I have a range of crutches – the usual under arm ones, and the elbow ones.  I also have a walking stick, which is more for balance on my wonky head days than actual support.

I have stools in every ‘working’ room of the house. I have one in the kitchen for when I’m prepping meals, so I can sit.  In the laundry when folding washing.  The bathroom.  There are stools all over the house, so when I need to sit down, I can.

When it comes to food prep, I have a theromoknockoff  (poor man’s Thermomix) which does a lot of chopping, cutting and prepping for me.  It’ll make a mean risotto with very little effort on my part.  It also does great soups, which I happen to love.  I throw in pumpkin, potato (or any other vegetable) some chicken stock, garlic and whatever spices I like. Flip a button and it cooks everything.  Flip another button and it blends everything up.  Pour it out and eat.  Voila! Soup with almost zero effort.

I also use my slow cooker a lot.  Throw everything in, turn it on and walk away. Come back 4 or 6 hours later to Butter Chicken, Hungarian Goulash, Morrocan lamb, Pulled Pork, or Sticky BBQ Pork Spare Ribs.  Excellent. And only one pot to clean up as well.

I usually make double batches, so that there is always something healthy and quick in the freezer for the really bad days when cooking is just not happening. I also keep mini meat balls, home-made chicken nuggets (gluten free), boiled eggs and lots of fruit in the fridge for quick, easy to access and nutritious snacks.

I used to use lots of fresh herbs but now I use mostly dried. I use jarred chopped garlic, ginger and chili. It’s not as nice as fresh, but it’s better than nothing.  I used to love making Indian and Thai curry pastes with a mortar and pestle, but I only do this very rarely now. Sometimes it’s worth the pain.  I also buy pre-cut veg and meat sometimes. More expensive and I’d rather do it myself, but it’s better than processed foods, which I tend to hate.  Loaded with sugar and salt, and not tasty to my tongue.

I often marvel at packaging design.  People do a three year industrial design degree at university to make packaging that is completely impossible to open.  Very impressive.  So I always have scissors nearby…in the kitchen, in the bathroom, in any room.

My favourite life hack is my Roomba – robot vacuum cleaner.  It whizzes around the house vacuuming up the endless dog hair and goodness knows what else, while I lie on the couch.  It does a far better job than I do, but every once in a while I do need to get the Dyson out and get right into the corners, where the Roomba doesn’t quite go.  But without the Roomba, we’d be living in a cesspit, so I love the little guy. I’m already on my second Roomba, it gets a good workout here!

My clothes are all easy on and off. No buttons, rarely zippers, lots of elastic waists. I mostly wear my yoga pants and a tank.  I have a ‘nice’ pair of yoga pants and my grungy ones for home and ones I actually wear to gym.  I have trouble regulating my temperature, so I wear a tank top, with a light jacket over the top.  The tops are generally loose, so I can step into then if I can’t lift them over my head.  I generally fasten my bra in the front and spin it around.  I can go bra-less, but it’s not the best look.

I only ever wear sneakers, they are the most comfortable thing for permanently inflamed feet. I have two different sizes, my normal size and a size larger for when my feet are too swollen to fit into the regular ones. I wear the larger size more often, truth be told. In summer I have slip-ins.   Elasticised straps, no buckles, laces or clasps of any kind.

Some days I can’t drive.  Sometimes I’m in too much pain for it to be safe to be on the road. Sometimes I have had to take too much oxycodone to be safe to drive. And sometimes my vision is too blurred to be safe.  It’s incredibly frustrating, because without the ability to drive, I’m stuck.  My vision is the most concerning, however, because it’s steadily deteriorating, my left eye particularly.  I have glasses….reading glasses for close up, other glasses for distance.  They don’t help much.

When I can drive I have a Disability Tag for my car, because even on my best days, I can’t walk very far.  And yes, I have been accosted several times about what a terrible person I am for parking in a disabled spot when I am clearly not disabled.  I have developed a thick skin for idiots, probably my most important tip or trick of all.

I am hearing impaired, so I have a hearing aid. I have trouble speaking on the phone, so I don’t much.  I need to see lips and facial expression to understand most days. So I tend to communicate via chat or face to face.  It’s not just about volume, however. I have sensorineural hearing loss (a problem with the tiny hairs in the cochlear and the nerve that transmits sound to the brain), most likely caused by autoimmune inner ear disease, given my history.  The hearing aid amplifies sound and helps me hear.  But I also have central hearing loss (a central nervous system problem, thought to be a problem caused by a lesion in my thalamus deep in the brain stem in my case) which means my brain has trouble interpreting sounds and understanding words, or filtering out competing noises.  The hearing aid doesn’t help with that. It’s a neurological deficit and there are no tips or tricks for that one.

I have two dogs.  One is well trained, but she isn’t quite up to the standard required of a service dog.  I just got a new puppy and I will train her to be a service dog. She will help me with all kinds of tasks around the house, assuming she enjoys the training and passes the tests.

Now for the not so healthy tips and tricks.

Red wine helps the oxycodone go down, in the most delightful way.  When pain is really, really bad (a few times a week) I drink way too much red wine.  Not a tip I’d recommend, but it’s the truth about living with severe pain, being the only adult who has to take care of everything, and the days when it’s all too much. Alcohol is another crutch I use.  I’m only just realising that it’s less a choice these days and more a compulsion.  Another problem that I am going to have to tackle.

People wonder how I keep it all together with all that I have to do and no help.  Well, I don’t always. Often I don’t keep it together at all.  I break and I use alcohol to reduce physical pain and to dull emotional pain. I strongly suggest you don’t follow my lead on this one, but the reality is, we all do whatever we need to do to get by.