Sharon Heaslip

SURPRISE🤗 MS and Me🌸

MSQLD-SHARON HEASLIP

Hello I’m Sharon Heaslip, wife, mum of 3, Grammy of 5, all of who are living Brisbane and Victoria. 58yrs old living in Mackay region Nth Qld. I was diagnosed SPMS in 2021 (55yrs) and this was my first diagnosis of MS. I’ve not been on any treatment as such for MS, but have been also diagnosed and on treatment since for Vestibular Migraine, that’s come on since MS.

At the time of diagnosis I was working full-time high end admin in our local hospital as well as Aus Award Winning Traditional Country Music artist touring all over the country, also community volunteer especially for aged and RSL and basically living flat out. When I was told MS I was a blank wall of shock, relief it wasn’t worse, confusion as my many Dr friends were so upset for me, guilt to “do this” to my husband and family, disappointment at missing wonderful music plans then the inevitable grief that comes from life changes sometimes mixed with panic of time passing and what will happen, when…then when symptoms escalated I kept getting scared and panicking which made things worse.

I have learned that it’s ok, next time something awful or weird happens to me that I can breathe and ride it out, will be ok. That’s my way of doing things and I know I’m blessed to be able.

I’ve never been hospitalised with symptoms but can identify from memory an onset of symptoms from 2018 onwards, including changed gait, tripping, foot drop to weakened or no power at all, painful lower limbs and shoulders and weakened hands, vision issues, memory loss, cognition issues, anxiety, hearing, speech, smell and taste issues (sometimes its totally not there or wrong message) , fatigue, minor balance issues to now extreme wall surfing and falls risk. this has all got major life changing worse literally since 2021.

MS diagnosis was a shock, for all of the earlier symptoms above, I thought I was unfit, lazy, stressed, age creeping in - I set about attending get fit classes and because I felt so exhausted told myself I really had to push as I was so unfit!! (It is at this time that I must say years in age for me did not equal commonsense in health!!)…all of the excuses, I even thought I’d had a small stroke in 2020 but looked it up and then dismissed it …….

After basically feeling more and more off early 2021 but still fighting my body and mind, I saw a GP who ordered a brain MRI plus 2 weeks later saw a neurologist who added spine MRI, then MS was instantly diagnosed.

The advice given was to stop pushing myself immediately and rest rest, mindfulness, decrease stress and eat balanced healthy diet in order to maybe somehow slow this change down and also dose of IV steroids….then due to medication sensitivity, oral prednisone stripped in hours what id been fighting in ability, to which I have never regained. (I immediately ceased the extra activities and planned what I thought would be couple of months sick leave- which quickly was an end to work at all.)

But REST they said loudly (after I did my best to work 2 weeks as handover) and all I could ask was “How does one rest??” “What is anxiety? I don’t suffer from that, I do suffer stress but anxiety??. over few months I learned a lot through MS Qld talking to the MS nurses, the lovely call chat ladies and websites and links, GP, MS Australia and lovely online support group through an Overcoming MS training course offered. I educated myself as much as I could but it really takes a lot of time and living to make sense.

I learned how that I needed to recognise this anxiety I had and to coax it down as much as I needed to and often as for me that and stress is far more impacting instantly than pushing my body. 1 part elevated adrenalin level = 10 parts MS impact. This even includes what you watch on tv eg. It’s taken me a long time to mostly handle these things but firstly I decided to be kind to myself if I didn’t get it right, as I know I sure will get another go at that!!

I did have a physical and mental health breakdown at the start so that did stop me for 6mths or so as I dealt with that while learning. In that period of time I was assisted wonderfully by my Neurologist’s nurse and MS Qld to successfully apply for NDIS and connect with MS Qld local coordinator. I had already been working with a Physio through my GP Healthcare Plan as I am a person who works at these issues by integrating exercise into housework living, I was never a gym patron, but always was aware of what I could do at home using things like big bottles of detergent as weights eg. Speaking of weight, well, that’s always been an issue for me so I have taken a long time to really change my diet habits, but well worth it. Again MS Qld website and diet advice has been valuable, keeping in perspective to reduce anxiety of that.

MSQLD guided links with Neuro and MS specific Physio has helped me physically with every aspect - weight training, movement, exercise, aqua therapy, internal nervous system tremors controlling, falls common-sense 

OT - memory function and strategies, cognitive and perceptions strategies, touch and senses and sensory, problem solving

So much to list for both I would say they are integral to forward survival and thriving. 

My MSQLD Support Coordinator has worked tirelessly with me, helping so much with finding services, facilitating the paperwork, allowing me to do what I can and keeping me safe. I rely and trust my SC for everything I need and I’m so thankful. 

As my health and ability did decline so much I’m so thankful to NDIS for so much assisted living. 

Daily life is now with wonderful support workers for home and everyday living while my husband is away at work, plus structured exercise and Physio, OT, Psychology and other services all guided for me by my wonderful MSQLD Support CoOrdinator as I’m not able to do this myself. 

My cognition and body is so affected that I’ve had to learn to let go and trust others. You be you is my motto, look up in Faith and I’m thankful for the many blessings MS has brought into my life and I choose to be positive and enjoy every moment as best I can. Memory loss has not been too bad a thing haha as I do forget a lot of what was troubling me anyway.

I cannot thank MSQLD enough then and now and I’m sure ahead in times.  Through help and support I’ve been able to keep learning and accepting and adjusting to life as its dealt with positive can do attitude (my choices) to thrive even as I accept more and more living support and deal with body changes that weren’t in my future plans. 

It’s been very hard for me to deal with and accept personal appearance changes including mobility aids, communication issues, sensory overload, memory loss and strength where I can’t safely hold a wriggling grandchild or really help a tired mummy, and horror yes at hair and makeup being wonky!!

My family have been so wonderful in support - none of our girls live nearby so FaceTime and phone calls and short times together have helped us shape what we need to do along the way. They’ve been so good and honest for me eg, telling me to stop trying to look after them and to just enjoy children and rest and be quiet when I need to just so I can do that. They just accept and support what I need.

My husband is my carer weekends when home and we’ve just adjusted as we need, not smooth sailing as we change old habits of me being the care giving house keeping wife or the decision maker etc to him now taking the pressure off me, but again I’m so blessed to have such support.

But, we have a laugh together about lots of things including the running list of Grammy’s New Words and sayings haha. I’m blessed to have my wonderful family lovingly say Mum its ok, you’re Sharon, Mum, Grammy V2

My friends have been wonderful too but I also actively reduced contact with my wide circle in order to be able to keep relationships with my small chosen few. I had to change this as I do not have capacity to talk a lot. I also didn’t know what to say - even to dropping out the country music circle, I chose to say little and concentrate on me. Some did keep in contact but I find it difficult to articulate what’s going on without feeling like a hypochondriac as truly this stage for me is very little of me in not affected and I don’t like having to justify or explain, its too hard.

The realisation that stop trying to figure it out is the only way for me, no anxiety for future just commonsense planning and accepting what may be with positive mind and self kindness

If you or a loved one is facing this MS road I want to hug you💝

Breathe, you will be ok, breathe. This potentially is life changing and scary so reach out for help even to sit beside you and listen while you live it as it takes seasons and months of living it to get it. Let yourself feel what you need as you go through it but reach out for help and strategies and if need be, accept and try meds if you choose to, it’s ok, you be you. Rest, have fun, laugh and do good mental health activities that you can. Mourn if you need to but look up and forward as you reach out to places like MSQLD who get it and educate yourself, find options and accept help. Life is not over it’s just different.

I am taking part in the 2024 MS Super Splash, to join the fight against multiple sclerosis.

I am raising funds to show my support and your donation will make an impact to change the lives of people living with MS.

Did you know:

• On average, more than 10 Australians are diagnosed with MS every week
• The average age of diagnosis is just 30 years of age.
• Three out of four Australians with MS are women

Your support will help fund essential services for over 5,500 Queenslanders living with MS. These services include our NeuroAssist information line, specialist nursing services, wellness programs and financial support to access critical equipment and services for those who need it most. 

Please DONATE to support my swim to help ensure no one faces MS alone.