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.
It’s pretty easy to forget about looking after ourselves some days, especially if we have a lot of things going on, or we are having a bad health day. A chronic health condition certainly makes this a little harder than ‘normal’, and the stress of daily living can get on top of you. But it’s super important to take time out for yourself and do what you need to get yourself feeling up to tackling life again. Check in with yourself often – how are you feeling? Do you need to do anything to help yourself today?
Here are a few things I find helpful to keep me going and deal with any stresses:
I always start my day but getting up and dressed, no matter how crappy I feel. Even if it takes an hour and I’m in severe pain, I have promised myself not to stay in my pyjamas after 8.00am. If I do, I find I just don’t feel good, and that’s not something I need to exaggerate, as RA can make me feel like that some days anyway. I get up, get dressed, wash my face (I shower at night, as showering saps all my energy and isn’t the best start to my day), and put on a little make-up. If my feet are sore I put on some running shoes. This small routine helps me feel fresh and human, and quite motivated to tackle my day.
Take a power nap
Getting enough sleep is super important. One thing I’ve discovered on my RA journey is that I get fatigued quickly. It’s pretty easy to fall into the trap of sleeping several hours in the afternoon and not feeling rested afterwards. Doing this often completely upsets my sleep routines, and throws my body clock out. If you’re feeling fatigued and your schedule allows, take 20 minutes out of your day for a power nap. Find somewhere comfortable, set a timer and close your eyes. You may feel that it’s not long enough but you’ll be surprised how great you feel afterwards. Don’t be tempted to nap longer! Get up and make a cuppa and get on with your day.
This is one of my favourite things to do. My feet are one of the worst affected parts of my body, so soaking them in some nice warm water, with peppermint foot soak for 30 minutes is bliss! With the amount of study and work I am doing at the moment, I am finding less and less time for ‘me’ time… so, I combine the two. As I type this, I’m having a foot spa, and jotting down assignment brainwaves as they randomly come to me. I’m the queen of multitasking! (Ok, not really… I suffer serious brain fog… hence the paper to jot the notes, but multitasking queen sounds much better!)
Write a journal
Keeping a journal of your journey and how you’re feeling can be a great way to get things off your chest. Sometimes just the act of offloading everything you feel onto paper is all that’s needed.
Mindfulness is a particularly powerful tool, especially when you feel everything in life is crushing you. Its basic principle is about refocussing your attention onto things that are happening in the moment. It’s very grounding, and I find it extremely helpful when I feel as if I’m losing control.
Go for a walk
Fresh air is the most amazing thing. When I’m feeling tired, sore, or a little down, getting out and going for a walk is one of my favourite activities to lift my mood. I also find short walks really help my pain levels. If you are having a bad flare, and aren’t able to walk around much, just try to get outside. A nice cuppa or a cool drink, some sun and a good book does wonders!
When you’re feeling really bad, it can be hard to remember the good things in life. Many years ago, shortly after diagnosis, I was lying on the couch in tears. I was in so much pain and wondered if I would ever be able to stretch again. It was awful. My kids were really young then, and I felt like a terrible mother.
Then I remembered just how lucky I was to have them. We had a roof over our heads, and food in our cupboards (even though I couldn’t cook it). I went to bed thinking of all the good things, however small.
That night that my entire point of view changed; I woke up the next morning, still very sore, but much more positive about my future. Write down (or type if it’s easier) all the things you are grateful for and look at them every time you need the reminder. We all have days where we need it – I sure do.
Some days you just need things to make you feel a little more human. Soak in the bath, moisturise all over, put on a face mask, and paint your nails! I like to paint mine outlandish colours with lots of patterns to distract people from the weird shape of my hands. Pampering applies to us all, so, men – you need to take care of yourselves too. If you can afford to, and your body is up to it, book yourself in for a nice massage. Hmmm… bliss!
I try to keep reasonably organised, especially in feeding my family and making sure we have what we need on hand. I plan ahead by keeping many homemade meals in the freezer for nights when my health or busy routine don’t allow me the energy to cook a healthy meal. This has saved heaps of money on takeaway foods, which we now rarely buy, and also saves me heaps of energy and time. The general rule here is – use some of your good days to prepare for your bad ones.
Ask for help
If you’ve tried many things and you’re still feeling stressed out, don’t be afraid to ask for help and support. Remember – you are not alone! Reach out to a support group; there are many online, particularly on Facebook. I belong to a few myself and they are invaluable. Talk to friends and let them know how you’re feeling. If you’re still feeling isolated, don’t be afraid to reach out for professional help:
Arthritis New Zealand: 0800 663 463
Youthline: 0800 376 633 or txt 234
Depression Helpline: 0800 111 757 or txt 4202
Lifeline: 0800 543 354
Healthline: 0800 611 116
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.