Sarah S’s blog
Hi I’m Sarah. I’m 35 and I’ve had rheumatoid arthritis since I was 22.
It’s been a challenge over the years to raise my three kids and reach my goals while navigating life with a chronic condition. I have gained a Diploma in Teaching (Early Childhood Education) and a Bachelor of Arts (Psychology), both since diagnosis, and am currently working towards my Master of Arts (Psychology).
I learned the hard way with little support, and my blogging goal is to offer tips, tricks and support to parents and young people who are on this journey too.
Dear pharmaceutical companies,
I’m really reliant on you guys right now. These last few weeks I’ve realised just how reliant.
You see, I need your medications to lower my immune system’s response. Your creations keep me moving. They give me the ability to get up in the morning, care for my children, walk my youngest daughter to school, go to work, attend university, use a knife and fork, cook meals, and sometimes if I’m lucky, they give me the energy to catch up with my friends and have a good time.
I need your medications to make my pain levels tolerable, and more medications to counteract the side effects of these painkilling drugs because they’re pretty hard on my stomach sometimes. I thank you for the medications that keep nausea and stomach problems at bay. I’m eternally grateful for the miracles you have created because even though I have bad days, I’m fortunate to enjoy some really good ones too.
Just a cold?
If only it was “just” a cold that I caught from one of my kids. Miss 9 had been coughing for a few weeks, and I stupidly began thinking I had dodged a bullet. All of sudden, I went downhill – high temps, wicked headaches, increased coughing and trouble breathing. After three days on antibiotics, I was worse, so I headed back to the doctor who decided I needed chest x-rays. The verdict was pneumonia, which meant more meds, and those that kept me walking and functioning like a semi-normal person were off-limits.Fast forward four weeks and I can hardly move. I have no strength and the level of pain is pretty high. Apparently I’m allowed to take my miracle meds again, and herein lies the reason for this letter. It seems when you pharmaceutical companies come up with these medical marvels, you forget the reason we need these meds. WE HAVE ARTHRITIS. And for many of us with RA, our hands are the worst affected.
If you look carefully at the photo here, you’ll see the plastic tab is ripped on my medicine container. This is because, after trying to use my fingers to pull it off, I gave up and used my teeth, also without success. This isn’t the first time it’s happened with medication with a tear tab like this on it. The only way to open it is to break into it with a steak knife, which is not safe when you have deformed hands to start with.
Another issue is teeny tiny lids. I have fat fingers with no grip so I need fat lids that are easy to grip. Child-safe lids are the worst. Funnily enough, when my youngest was four years old, she could open those lids, and I couldn’t.
The silly thing is that quite often even able-bodied people need steak knives to break into packaging like this. So my question is: Why make them so hard to open? I understand that they need to be sealed, but I need the medications even to be able to open some of these things. What do I do if I can’t get into the meds? Once, embarrassingly, I had to ask my 83-year-old neighbour to help me open them. This should tell you something, surely?
Please realise that if the medications are for arthritis, or any other condition that causes disability, then we need easy-to-open packaging. I would appreciate you putting some thought into this matter.
A 35-year-old trapped in an elderly woman’s body.
P.S If you’re a pharmacist reading this, perhaps you could help out by opening the lids for us. I have noticed that many will do it for older people without asking, but when you’re my age, you don’t even give it a second thought. This is something I know many thousands of us would greatly appreciate.
Editor’s note: One of our key 2017 election campaign messages relates to packaging. Find out more here and read our 2017 Election manifesto.
If you’ve had arthritis a while, the chances are that someone (or perhaps many people) have reminded you of the importance of exercise for managing arthritis. The medical professionals are right about that – exercise is a helpful tool for pain management.
In fact, after much trial and error, I can say that light exercise has reduced my pain considerably compared to what it was before I started. Yet while exercise may be helpful, it’s not always practical.
I’m at an age where I’m considered by the world to be too young to have arthritis, so it’s frustrating being constantly too tired to do much. I’ve been encouraged to join an aqua aerobics group although I haven’t been able to attend as I’m at university at those times. How about a brisk walk around the block? Sorry, I don’t like to walk by myself after dark.
Besides, I have a family. Juggling everything to fit in those extra 20 minutes of cardio is quite difficult. So I have put together this list of DIY exercise tips and I hope you find them helpful.
For beginner exercise
Exercise can come in many shapes or forms and as a young person with arthritis, you can get exercise by simply doing the activities that many other people take for granted.
Wash your hair and shave your legs in the same shower
The mums I know can understand why this is difficult. By the time you’ve finished, you’re exhausted. Well done – you’ve earned a nap.
Do the grocery shopping
It’s a challenge – getting in and out of the car, racing around the store, carrying all those heavy bags to the car and hauling them into the house. Bonus exercise points if you have to carry the groceries to the second floor of your home. Again, you’re exhausted. Pat on the back, you’ve earned another nap.
The washing pile in our house is called Mt Washmore for good reason – it’s huge. Wash, hang, bring back in, fold, repeat. It takes around 20 minutes, but it’s still tiring.
I’m pretty sure that this needs no explanation. Rheumatoid arthritis and vacuuming don’t mix. Afterwards you feel like you’ve run a marathon. Nap-time!
Dropping the kids at school
Getting the kids organised, fed, and into the car each morning is a mission! Especially if you need to drop them off at two different locations, twice a day. Don’t feel guilty if you need a nap, you’ve earned it.
Do the dishes
If you’re anything like me, doing the dishes is a sole charge occupation for you. Breakfast dishes can take aeons. If you have teenagers you’ll also spend time rummaging through messy bedrooms looking for errant dishes, cups and utensils. Needless to say, the headless chicken exercise routine is exhausting. Pat on the back, you’ve earned a nap.
For advanced exercise
The ‘hurry the landlord is coming’ exercise routine
This exercise involves all of the aforementioned routines bundled into one frenzied time-constrained sequence. Add in mopping the floors and you’ll be feeling that heart pumping in no time.
The ‘in-laws are coming to dinner’ exercise routine
Combine and blend all of the aforementioned routines, and then add a fast-paced routine of cooking a balanced, healthy and yet delicious meal. Phew!
Take the kids on an outing
This is a pretty advanced routine. It inevitably involves going to a zoo or park and a whole day of walking and occasionally running after the kids if they stray too far. Feel free to use passers-by to help catch the children if you are still at an intermediate phase of exercise. This add-on modification to the routine may save you some exhaustion.
And there you have it folks, the complete ‘you’re too young to have arthritis’ guide to exercise. To finish, just remember that you’re not alone in this and that there’s more to arthritis than the pain. Take it one step at a time.