Limitations. To me, that’s always been a dirty word. It didn’t matter whether it came from my family, my friends or my doctors I was always determined to prove them wrong. Even as my 18th birthday approached, my rheumatologist was dead against me skydiving*, he told me it would be too much on my joints. I hobbled out of his office, and a few days later my family watched as I took my leap of faith, recorded of course, for two reasons:
- So I always had that memory of what my amazing experience; and
- So I could hand deliver a copy of my video to my rheumatologist, with a note explaining that while I may be in agonising pain, I have completed something that I have always wanted to do and the few days of pain were (in my opinion) a lot better than the thought of sitting in a nursing home in my senior years regretting that I had listened to those that told me I couldn’t do it.
*While I certainly don’t advocate that this is particularly the right course for action for everyone, I suggest you do your own risk assessment, with the input from your medical team and make your own decisions.
Fast forward 13 years and as my limitations grew, so has my ability to stick my head in the sand and pretend it’s not happening. I’ve always looked at it as accepting limitations was allowing the arthritis to win, and I’ve always been determined not to let that happen. I didn’t ask to have arthritis, and there was always that underlying anger as to why I had developed it. Not fair, I have too much to do!
I am now at the stage of having to create a network of people to help with even the most basic tasks. Vacuuming the floor uses up a day and a half’s worth of spoons. I am building a business but need to find someone that can be the face of the organisation because I am finding that the inconsistencies of this condition don’t allow me to plan an event and guarantee that I will be well enough to show up for it.
I think this in itself makes the condition flare up. Knowing I have to be somewhere at a certain time, on a certain date and I start to stress that I may not be well enough to attend. As silly as it sounds, I have even gone to the lengths of contacting long range forecasters to see if the day that I want to have the event will be a wet or dry week, in the hopes that in doing so at least the weather factor can be potentially eliminated.
It’s extremely frustrating because it never used to be this way and I am tired of letting people down.
- Have at least one other person willing and able to step in and run your event – regardless the size – just knowing that there is someone else there will help eliminate stress.
- Plan ahead – if weather is an issue check the forecasts – it’s not an exact science, they are not always going to get it right but at least you know you’ve tried.
- Make sure you are prepared for your event, with the speaker (if you have one), content, venue, catering, whatever else, booked and paid for weeks in advance.
- Have fun. Make sure you have fun.
- Dry run. Conduct some dry runs of your event, to reduce the chances of unforeseen events occurring. Unforeseen events will increase stress. Stress is bad.
I hope everyone is having a great weekend. Got more tips/tricks that I haven’t mentioned here? Do you know of good planning software that can assist with event planning/management? Would love to know about them 🙂
Scrolling through my facebook feed, I came across a question being asked in one of the business forums I am a part of. What jewellery do you wear? Simple question, but it pointed out the differences between myself and others without arthritic hands.
I am lucky that even though the arthritis is active in all my finger joints, my right thumb is the only one showing significant deformity. Due to the arthritic activity, I choose not to wear rings on my fingers as they become too uncomfortable when my fingers do swell and knowing me, I would take the ring off and leave it in a safe place somewhere, taking forever to remember where that safe place was.
When the arthritis first started in my hands when I was 6 or 7. I remember playing handball at school and striking the ball at an odd angle. The pain was significant and instant, as was the swelling. Not wanting to worry mum with something else, I didn’t tell her, instead I iced the joint and hoped it would be nothing more than a sprain. A few days later mum noticed the joint was swollen, I will never forget the look on her face. The look of fear mixed with devastation while trying not to show it. Not long after we were on a plane flying back to Perth for another round of steroid injections.
Not long after, the rheumatology team decided to splint my thumb so that it would fuse in a ‘functional position’. They have been successful to a degree, it stays out of the way, and the pain is no longer there. Both positives 🙂
As the arthritis has progressed I have found ways to alleviate the pain and I believe the deformity. My mum was adamant that I do activities that would maintain the dexterity in my finger joints. She bought me a nintendo playstation, my grade 5 teacher taught me cross stitch and I learnt how to strap the joints to allow them to rest until the flare had passed.
My physio when I was a kid mentioned a company called the silver ring splint company who make splints for fingers that look like jewellery. I never went down that road, but may look to do so in future. It’s handy to know that there are companies around that can make something such as hand splints look fashionable 🙂
But in answer to the question posted in the forum, I wear a watch (ICE watch in my favourite teal colour), a toe ring on my right foot and an anklet – also on my right foot.
I was often asked when I was at boarding school why I would wear a toe ring and the anklet on my right foot. I told them it was to reduce the embarrassment of the people that would stare at the deformities on my left foot. If they were caught looking, and they felt uncomfortable, I would strike up conversation about the toe ring, or the anklet, and it would often alleviate the awkwardness.
What jewellery do you wear?
I love Christmas, particularly now that I have two children who are beginning to believe in the magic of Santa. I also love that my family are very thoughtful people and constantly on the lookout for gadgets that may help to take the stress and pain out of even the most mundane of tasks.
This year I was given a Jarkey. A simple gadget that is designed to take the hard work out of opening jars. I love this for a few reasons:
- It actually works
- You do not have to squeeze handles to operate it (another bonus when the arthritis affects your wrists and hands as well)
For those that are in the dark as to what this funky little gadget does please click on the YouTube video below (be warned I think this clip is as old as I am):
Please join the conversation at my facebook page
Everyday there seems to be a new ‘arthritis cure’ promoted by media organisations looking to boost ratings. I personally find this very upsetting, not just for those that live with the illness, but also for their loved ones who are helpless and just as desperate to find answers to help relieve the pain.
So when my mum phoned me a few days ago with the latest ‘cure’ for rheumatoid arthritis on GEM (for the record I have ankylosing spondylitis but there are many treatments that are similar), I was not in a huge hurry to check it out but mum was insistent that this may be different.
So it turns out this story was not another re-run of green-lipped mussel oysters capsules, a fad diet or exercise program designed to cure every type of arthritis regardless of whether it was inflammatory or degenerative. This was a story about a device about the size of a 20 cent piece (which in a nutshell) works by zapping a nerve thereby reducing the amount of inflammation in the body. To read the full story please click on the following link:
I’m interested to hear your thoughts on this potential new treatment. Please join the conversation by going to:
I am often asked by parents about what jobs might be suitable for their arthritic children who are looking to enter the workforce. My response is usually there is no job in particular that I would recommend.
My advice is to break it down into what it is that you enjoy doing (this is true for everyone regardless of whether or not they have arthritis, if you love what you do it makes it so much easier to get out of bed in the morning).
Assess the job criteria. Is there manual labour involved? Are there long periods of inactivity (for example sitting at a desk for hours without moving around)? Are the hours varied? (Shift work such as hospitality can be hard for those with chronic fatigue.) What tools are required to complete tasks? Do they put extra stress or strain on already sore and fatigued joints and are there modified tools available which may make these tasks easier?
Over my working life I have tried many different types of jobs. I am up for giving almost anything a go and I love learning. My jobs have included veterinary nursing, rendering houses, hospitality, pad printing, retail sales, property management and at the moment it is website development.
The work that I have done at various stages of my life has been largely dependent on which joints the arthritis was most active in at the time. When my back is particularly bad I find that hospitality works well for me as I am up and moving around, when my legs are an issue I opt for an administration position.
If you are unsure as to what you would like to do I also recommend work experience. Most employers that I have spoken to are happy to have people do work experience with them, they get a few hours of free labour and you can find out whether:
1. You like the job
2. It is suited to your abilities
3. How much modification (if any) would be necessary for you to perform the tasks required
A website recently started up called Enabled Employment. This is brilliant for those that have computer skills. Check them out here http://www.enabledemployment.com
Speaking with an occupational therapist may also assist you with finding suitable career options, an OT can also assist employers with workplace modifications and apply for funding to assist with paying for these for those eligible.
I hope this helps 🙂
I recently watched a video uploaded to YouTube by a friend of mine Stacey Copas and would like to share this with you. In the video she outlines how she turns any adversity into an asset by changing the way she views the situation.
Having to deal with pain on a daily basis can certainly cause anyone to become quite negative towards their situation and I certainly am no exception to this rule, there are certainly days when I would love to not have arthritis! In saying that though having arthritis has given me the opportunity to connect with so many wonderful families, it has given me strength and the ability to look at someone and not instantly judge them (how many times have those of us with arthritis been told ‘but you don’t look sick’).
Check out the video below and please let me know ‘What are you most thankful for?’.
Imagine you were restricted to a wheelchair, and could only go where your wheelchair could—only to places that were handicap accessible. Imagine you needed certain specialised services. Now imagine you were moving to a new town, and the only information you could get about this new location was from people without disabilities; people who have no idea which places are accessible and which are not, people who have no clue what specialised services might be available.
Hi. My name is Tara Anderson, and I’m the founder of a new website called EnabledIsAbled.com The vision behind this website is a simple one: to allow those of us with disabilities to access the information we need for our day to day lives; information on businesses, products and services that matter to disabled people.
This website was born out of my personal experience. I was diagnosed with juvenile arthritis when I was just three years old, after my parents had spent two years flying all over Australia trying to find out what was the matter with their daughter. I’ve spent my life in and out of a wheelchair. I’ve made numerous moves across the country, and each time I moved I had to start from scratch; learning how to navigate, finding the services which help me manage my condition and experience life.
EnabledIsAbled.com will include a directory with in depth information about services and accessibility, including such information as rebates, languages spoken and who the services would be recommended for. It will also feature a nutrition module, focusing on the benefits of food as medicine; a gardening module with information to help us grow our own food, and a mismatched shoe module that will allow those of us with completely different sized feet to sell our single unused shoes to our sole-mates.
This website has the potential to become the ‘go to’ source for all those with special needs and their caretakers; both those planning to relocate as well as those who just need information about the place they already live. It’s a website that meets an enormous need. But for this website to go from a dream to reality I need your help. I’ve been funding this project out of pocket, but I’ve only got so many resources. Right now, if we are going to be able to finalise these modules and bring this website up to its full potential, more funding is needed.
This is your chance to partner with something that will really make a difference in the lives of many, many people.
Please feel free to contact me with any questions you may have.