THE FAMALAM INFLUENCE

Not quite sure how the term famalam entered my vocabulary but here it is as I talk about my family and close friends since my MS diagnosis.  When I was first diagnosed, I entered what can only be described as a sense of shock and self-loathing, harsh but fair. I didn’t want anyone outside of the captain, my sister and my parents knowing, I didn’t even want to tell my two daughters I wanted to be that ‘closed’ about it. I totally allowed the diagnosis to consume me and entered the lowest point of my life I didn’t want to go out, see anyone or accept the situation. They say that you go through stages which includes denial, anger, grief before even getting to acceptance. My concern was vanity and misconceptions, I knew only too well how I could be judged if I revealed I had an incurable auto immune disease – who knows what that means anyway!

So back to the famalam influence, my mother was diagnosed with Multiple Sclerosis at the age of 29 I would have been eight years old and my sister five.  The funny thing was at the time my Mum used to fall a lot and she would be covered in scrapes and bruises and yet she carried on. As kids we didn’t understand and so it was treated with whoops a daisy humour and just seemed ‘normal’. I can remember vaguely badgering my Mum to take part in the parent’s race at sports day, she really didn’t want to and made a point of saying she couldn’t run.  So, what did I do I carried on moaning until she said yes, and boy did she compete and of course came last, it didn’t matter though my Mum was in the race. I did learn a valuable lesson that day and it’s an annoying trait that I also have, my Mum and I (adult me) tend to put others before ourselves and at times it is detrimental to our own wellbeing.  My sister and I were blissfully unaware of the MS part until we reached eighteen and fifteen years old respectively, even then we didn’t really ‘get it’.   Sure, we understood why Mum fell over and couldn’t run etc but the part about fuzzy nerve signals and demyelination kinda went over our heads at the time.

The point of mentioning my Mum; she is 74 years of age, upright and only now has a small scooter to help on walks. Now don’t be misled she is always in pain, struggles to sleep and indeed gets frozen or stuck when needing to move however she pushes on and still fights this shite disease.  With my diagnosis I would say that I was fortunate to have my Mum’s knowledge which at times as been insightful and she makes no apology for pushing me ie pick your feet up, do your exercise, stretch.  One of the biggest issues I’ve had personally is with confidence, so for those that know me of old this seems ludicrous, but I’ve been so scared everyone would see MS before me, Amanda.  Its with fondness post pandemic I travel to my Kent retreat aka Mum and Dad’s for my wellbeing fix which certainly helps with ensuring I push forward. At 52 having my parents around to do this is undeniably a blessing.

2023 marks the ten-year anniversary of having met two special ladies who are in my life.  Katie and Caroline (who I worked with in my Kuoni days) have been so supportive since my diagnosis.  From constant What’s Ap chats to video updates we have navigated the pandemic and ensured we retained a constant dialogue.   It’s funny because even when I’ve had bad news from my Rehabilitation Specialist the videos have been my go-to and whilst I won’t cry about having MS my friends have certainly seen a lip wobble a couple of times. I kept swerving a physical meet until I was told by my MS Nurse to get myself back out there even if it meant hiring a mobility scooter!  Me in a mobility scooter, no f**ing way I said when talking to my friends, great idea they said let’s meet at Bluewater!  And so, I was persuaded, booked a scooter from the Mobility shop, and found myself being excited for the day out. 

I arrive at Bluewater; Caroline came to my car to escort me to the mobility store so I could use one crutch and her arm. The experience of hiring a mobility scooter was rather like riding around Bluewater in a dodgem car. I was with my friends so it was ok, I was hoping I wouldn’t bump into anyone I knew as I would have attempted to get out and say ‘Hi, oh it’s not for me, just messing about!’  The only bit of aggravation was when taking the scooter to the toilet, I drove into an L shaped bathroom for the disabled not even thinking how I’d get back out.  There I was attempting to do a three-point turn, seriously stressing that I was never getting out, the headline reading ‘Missing Cambridge lady found in the disabled toilets of Bluewater after failing her mobility scooter test and getting stuck!’. Logic finally prevailed and I went out the same way I came in by reversing, in my defence it was all new to me, doh! When I returned home, I felt a sense of achievement and that Id pushed through my own glass ceiling and I have my friends to thank for that.

I always knew I couldn’t hide forever and the catalyst for change was my beautiful auntie Patsy’s funeral last year. My cousin Denise, Patsy’s daughter has also been one of my earliest confidants and she was quite adamant I would attend the funeral.  Its not that I didn’t want to go, I loved my auntie and certainly wanted to be there.  After much talking and confidence boosting from Denise, I enlisted the help from my daughter Ella to attend.  Now the reason this was a big deal for me is that my mum is the youngest child of eight, the family is rather large, and most did not know about my MS. As I walked in the chapel, I had one crutch and tried hard to lift my knees and not look so stiff. I can remember hearing my cousin Janet say, ‘that’s Amanda, what has she done to her leg, that’s Amanda!’. After the service and as we all made our way to the wake most of the family had now guessed my condition.  By the time we reached the wake it was old news and the big deal Id made of it in my head was shockingly inaccurate. 

One thing I have been painfully aware of since my diagnosis is that we place unnecessary restrictions upon ourselves. I have been so fortunate to have very supportive close friends and family from my daughters, the captain, my cousin, my friends, my sister, my Nanny Rose and of course my parents. I maybe more fortunate that most by having a supportive inner circle and initially it was easy to close myself off to this.  It’s so important to talk and share however you do it and whatever its about, it’s easy to disappear and be consumed by what you can’t do rather than what you can!  Attitude & Application it matters…