About six months after the birth of our second baby, I woke one morning feeling tenderness in my feet. I didn’t worry too much about, but after about a week it had gradually worsened to the point that I couldn’t bear to put weight on them. I had some other mild flu like symptoms including fatigue, general body aches and fever. A trip to the GP and some blood tests indicated some antibodies in my blood, signifying the presence of an autoimmune condition, in the family of the Lupus (more recently I have been diagnosed with systemic Rheumatoid Arthritis). I was referred to a rheumatologist, commenced some immune suppressant medication and went on my merry way. After the initial onset, I didn’t experience any symptoms and at times forgot about the condition.
Earlier this year, at almost the exact same time post birth with our third baby, I developed some tenderness in my feet again and accompanying flu-like symptoms. I was not too concerned as I had dealt with this before, and it had been a mild nuisance for a few weeks that had seemingly cleared on its own. However, this flare was not set to be like my first one. After about a month, the tenderness had moved to other joints; my wrists, knees and neck were worst affected. My current Rheumatologist made some adjustments to my medication but things continued to get worse. After some time, he put me on a high dose steroid that helped me to feel good again; I thought I was over the worst of it. But as I was gradually weaned off the steroid, the symptoms returned with vengeance. It was a slow boil, but each day the swelling and pain in my body intensified, to a point where I was no longer able to do everyday tasks. My joints were so inflamed and my body was no longer functional.
I would have to wake my husband in the night to lift the baby from the cot, as my hands were too painful and swollen. I would feed the baby in the rocking chair, then sit for five minutes before summoning the will to push through the pain of standing and hobble to the cot only to almost drop the baby into bed, as I was unable to bend or lean over. On my worst mornings, I was almost unable to get out of bed, I would shuffle painfully to the side of the bed and again through sheer willpower, I would sit up and slowly move to the shower. My husband and big kids were my saviour during this time. He would turn the shower on for me (I couldn’t turn the taps) and I would stand under the hot water for five to ten minutes and let The warmth slowly help me to get moving. My big kids would often have to help me dress, my five year old boy who is such an amazingly empathetic little person, would tenderly pull my jumper over my head or pull my jeans up for me. It’s an incredibly humbling experience when you’re supposed to be in the prime of your life, and your children are helping you with simple tasks you had taken for granted that you would always be able to do.
My eldest, our daughter who is only eight years old, was incredible too. She would go to the baby in the morning and pull him out of his cot, take off his sleeping bag and bring him to the living room and start his breakfast. I would emerge slowly after finally getting dressed and my hubby and kids would be busying themselves in the kitchen, prepping breakfast and getting ready for work and school.
It was actually fortunate for me that I was at my most debilitated during the COVID-19 shutdown, so the kids were being home schooled and my husband was running the business from home. I don’t know how else I would have survived through this time without them. I would lose at least the first half of the day as my body ‘warmed up’. All I could manage was to oversee the kids doing their schoolwork and do the bare minimum with the baby. I couldn’t even pick him up off the floor as I couldn’t bend that low. The second half of the day, I would try to make up for the lost time, organising a basic dinner and spend some time with the children. At this point, I wasn’t even able to walk a lap of the block. I remember my husband being so concerned one day when I had to turn back after less than a hundred metres. Prior to my flare, I had loved walking and would walk 5km easily most days. I was rapidly losing weight, my hair was falling out and I had virtually no energy. I was a mess.
During this period, I sought advice from a new Rheumatologist, as I did not consider my existing specialist to be a particularly consultative doctor, nor did he seem to be concerned with my health and well being goals. My previous specialist offered me only one treatment plan which involved a chemo based drug and instructed me to wean my eight month old baby ‘immediately’, with no suggestion of any other treatment options. I implore you; if you have a health condition and the advice you receive from a doctor or specialist does not resonate with you, please seek a second opinion. This decision was a game changer for me, and has helped me to return to a functional body, with a less severe medication plan and I’ve been able to continue to feed my baby, which is so important to me. I write more about this journey in my blog; Balancing my health and my baby’s needs.
In addition to the western medicine, I also started to explore other ways to support my healing. I desperately wanted to return to great health and I was prepared to do things I’d previously said I wanted to try but had never followed through on. These include:
· Daily meditation practice – 10-15 minutes each day to centre myself and enjoy some time when my brain isn’t racing. I have totally embraced this routine and find on the days I miss it that I really notice the impact on my stress levels and general energy. There are some great apps that you can download with free guided meditations. I prefer these over the music that you breathe too as it helps me focus, but whatever works! I love the Oprah&Deepak 21 day meditation app, but there are some other great ones like Calm and Headspace too.
· Journal – I journal daily, my routine is pretty simple. I started writing notes about my health, rating my day out of 10 and any additional info that I might like to reflect back on as a way to track my healing. I now use it more as a download of my day. I then write three things I’m grateful for. This can be as simple as enjoying a hot cup of coffee, it doesn’t have to be complex! The most recent addition I’ve made to my journaling is I write a simple list of what I have planned for the next day. This can include errands, phone calls, dinner plans. It’s amazing how when you write the list and organise your mind the night before, how you will achieve those things the next day.
· Acupuncture and Chinese medicine – I have been to the same practitioner for over 15 years. I haven’t visited them consistently over that time, but I have sought their support at times when my body needed help e.g. when I was trying to get more consistent cycles before attempting to conceive, during pregnancy to balance my body, to assist with going into labour and most recently, to support my energy (qi) and reduce inflammation and increase mobility naturally for my autoimmune condition. I am a firm advocate of these practices that span backs hundreds and thousands of years. They have helped me immensely, particularly as they work to complement the western medicine treatments.
In addition, I have learnt some other new things:
· It’s ok to express my needs and put my needs first. I literally had to be brought to my knees before I could acknowledge this, you don’t need to wait that long, learn from me!
· It’s important to be in the moment and enjoy the now. We are so often rushing onto the next thing and not stopping to enjoy what’s happening right now.
· My children are highly capable and have way more capacity to do things for themselves than I ever gave them credit for. As a mum, I martyred myself doing things for them all the time, which really isn’t helpful to their development. They can prepare their own snacks, make their breakfast, brush their hair and teeth, do the dishes, vaccum! I just needed to get out of the way and let them.
· I listen to my body. When it tells me its tired, I have learnt (the hard way) that I need to rest. When the week has been too busy, its ok to cancel play dates/social plans so that I can be at home. If I need to go to bed early, that’s ok too and should be encouraged if that’s what my body needs. Such a simple concept, but I have spent years ignoring my body’s cues and now, finally, I am listening.
· Accepting help is not a sign of weakness. It takes strength to recognise that you need help, and even more to ask for it. I have spent many years being the ‘strong’ one that doesn’t rely on help and is always available to help everyone else. Through this experience, I was truly humbled by how much help I received. At times, it was overwhelming, but I am forever grateful to my family and friends who provided meals, cleaning, babysitting and general support to me during my most confronting health challenge.
· Communicating openly and directly – this is one I need to be vigilant with as I have a tendency to be indirect as a result of being scared to voice my needs. A new family routine we have as part of my open communication is ‘No Cook Sundays’. I voiced to my family that mummy will not cook on Sundays (also segways nicely into expressing my needs). We can have leftovers, make your own plate or takeaway, but mummy is not in charge of cooking. Again, a seemingly small change but it makes a world of difference to my week. I love Sundays!
I am now five weeks into my new medication and treatment plan. I return to work in the coming weeks, two days a week so this will be an interesting transition and test for me to maintain the balance of my routines above. I am still very much on the journey to great to health but I am positive that I will get there and I am so grateful for the legacy of this recent challenge with my autoimmune condition. I look forward to being able to share the next chapter, returning to work as a mum of three!
A lovely well written piece Tash, lots of love Jedda
Thank you Jedda x
As a fellow autoimmune sufferer I also love this quote “I’m thankful for my struggle for without it I wouldn’t have stumbled upon my strength.” for reminding us of gratitude and the “spoon theory” for reminding us that limiting and pacing things in life are okay as well. It’s great to hear you are finding drs and treatment plans better suited to you medical needs and personal values. To be treated well is all anyone wants xxx
A great quote and reminder Amy, thank you for sharing x
Wow Tash that’s a crazy experience that you have been through, I am sorry to hear it. Let me know if there is anything I can do at all please xxx
Thanks Tan, a crazy experience that has taught me so much about what’s really important in my life x
Thank you for sharing your struggles in a very real and down to earth way. My Mum has suffered with an autoimmune disease for so long I can’t remember any other way. I totally agree with seeking new help and guidance if you are not getting a good result with a current doctor. We did that and it changed my mums life, which she nearly lost due to bad management. Well done Tash keep reaching for the stars ⭐️
Hi Charmain, thank you for sharing about your mums journey. It has been a steep learning curve for me and I admire the many people out there like your mum who have soldiered on whilst struggling day to day for such a long time. I have so much respect for them. Thank you for reaching out and your kind words xx
Tash I’m so sorry to hear of your struggles. You are one strong mumma! I love all your suggestions and often need to be reminded to make space for me, for self-care and to enjoy the now so I will be following along as your words really resonated with me xx
Thanks Briony, I salute you as a mumma who shares her journey and experiences too. I am so glad that my words resonated with you, thank you for following x
Congrats Tash, I admire your writing and wish you good luck with the blog. Would love to catch up
Hi Jill, thanks for taking the time reach out. It would be amazing to catch up soon!
Hey Tash, that’s such a painful journey you’ve been on. I’m so glad you persisted to find the right medical people who listen and see you as a whole person. It’s brilliant that you’re doing the eastern natural therapies too and you’ve had improvement. You write beautifully about your family and show how, when challenges arise – just how amazing our children are. (And hubby) I hope that you continue to improve, and have increased energy and less pain. I’d no idea, you are an amazing mum!
Thank you aunty Trish, I truly believe in the holistic approach to our health, things like eastern medicine have helped me immensely on my healing journey. I am so grateful to have your support.
Very well written Tash! I love ‘ accepting help is not weakness’. Mums all over the world would benefit from learning that lesson ♥️
Thank you Stef, I hope in sharing my observations as a mumma that this resonates with other mummas!
Oh Tash, thinking of you & Matt and your independant family, so glad your on the road to recovery, sending you a lot of love and hugs. Remember I am only a phone call away should you need help with anything. We will make time.
Aunty May & Uncle Sione xx
Thank you so much Aunty May and Uncle Sione, we are so blessed to be surrounded by the support of our Niuean family.
Hi Tash 🙂 I missed this post a few months ago and just came across it now. I can relate so much to what you have been going through as I too have been diagnosed with a auto immune condition Ankylosing Spondylitis. I’ve had chronic pain for 10 years now and went 5.5 years undiagnosed! I totally relate to the guilt felt by learning to relay on people and letting down the kids with being unable to do things during flare ups. It has taken me many many years to listen to my body and learn my limits and I still struggle with this and push it too far on occasions, such as this past xmas.
I couldn’t agree more about getting a second opinion and have so far avoided the auto immune supressing drugs and am constantly trying new things and putting more pieces of the puzzle together.
Take care, here anytime if you want a chat! xxx