MS Diagnosis – Adjusting to life with MS

When I look back to when I was first diagnosed with MS from where I am today, I can see that adjusting to MS diagnosis was quite an ordeal. Despite my gratitude for not having a tumour on my spine, there was still much shock and anguish to go through.

 

I remember on this long weekend to Lorne, I was not feeling all that right? Remember putting down to allergies as Spring was coming early. Little did I know what was to come in a few months time...
I remember on this long weekend to Lorne, I was not feeling all that right? Remember putting down to allergies as Spring was coming early. Little did I know what was to come in a few months time…

The MS Diagnosis wave of emotions

My first initial emotion was relief and celebration that I was not dealing with cancer and a fight for my life. Then, the reality sets in and you feel that wave of change hit you.  All the research you’ve been doing about what a diagnosis with MS means. Disability and not being able to physically do things for yourself becomes a major consideration.

I found myself sobbing when I’d lie down to go to sleep.  My legs were numb and tingly, my mind focused on where I’d been told my lesions were on my spine and in my brain.  Where could this tingling go? Does it mean I may lose the ability to walk one day?  Will I not be able to drive?  Am I going to wet myself and need to wear adult nappies when my incontinence kicks in?  Will I be able to have kids and be able to play with them? Am I going to lose my independence.  ALL the worst case scenario’s play out.

At my time of MS diagnosis, I was a newly wed and I loved to travel.  In my mind I’d had plans to have a baby in the not too distant future but now I was a little scared.  I could see that others with MS had kids.  Many seemed to have had them before they knew or at the time of diagnosis. But how will I go?  I had suffered a lot with Depression and Anxiety over the years and knowing MS may be a major contributor to this, it did concern me to be a parent with MS.  That I would be more susceptible to depression because I have been in dark places before.

Deciding on my treatment options

After taking home the leaflets from my first neurologist appointment, the biggest priority on my mind was being able to have a baby.  I was 32 and my biological clock was ticking.  At the time I had a choice of three injectable therapies Avonex, Rebif Betaferon and Copaxone.  I was completely swayed to Copaxone for it was sold to me as the safest option if I were to fall pregnant.  The biggest drawback was it was a daily injection which meant I was to inject myself everyday for the rest of my life (although, not while pregnant).

I started my daily injections of Copaxone in January 2008.  I remember the nurse coming around on a hot summers day with the blue bag of goodies.

  • My auto injector contraption,
  • my round, coloured magnetic alarm for the fridge to remind me of the time to inject (looked like something from a Mattel game),
  • my instructions with a map of the body pointing to all the places I needed to rotate my injections.  (You get sore welts as the injection is subcutaneous, just under the skin so it is like a largish mozzie bite or hive irritation)
  • My cool/heat pack to use cold from the refrigerator post injection to relieve the heat and stinging feeling. I’d sit for 15 minutes every morning with this, 7 days a week
  • sponges to show me how to manually inject without the auto inject (which I opted out of learning/trying at this time as I was already freaking out about self injecting)

In the early weeks of MS Diagnosis I learned how to give myself a daily jab of Copaxone.  I cannot remember what part of my body I injected first but do remember my muscly thigh hurt way too much, so only went there once or twice.  My husband Craig would jab me in the buttocks many a morning.  I was capable of jabbing my upper arm resting on a chair back but did have a couple of times after injecting my upper arm, where I got the nasty reaction – my heart palpitated and I had to lie down from the head spin rush for 25 minutes or so which was scary.  My favourite spot was my tummy.  That was, until a few years down the track I successfully managed to lose some significant weight and there was less body fat.  Too much scarring and not enough rotation gave me troubles.  This was a main reason for my ceasing with Copaxone a few years later.

Physical fitness after my MS Diagnosis

My mind filled with limitations from all the information I was reading about MS and heat, exercise, fatigue, spasticity… it was driving me to adjust my workout routine.  I opted to take an eight week meditation course and changed my routine from high impact Body Attack classes to Pilates.  I scaled down my exercise routine to lower impact and intensity, particularly when it came to cardio and breaking out in a heat sweat. I quit the boxing and carrying heavy weights up and down stairs in Personal Training sessions.  I began a process of thinking my life, the fitness regime and my newly improved physical body at time of MS diagnosis was to be a reality of the past.  My physical fitness future was to be low impact, mellow, subdued…

Deciding to Change Jobs

MS diagnosis also brought about changes in my career.  I was working as a Member Care Manager at a local Fitness Club.  Given my exercise routine was changing I was feeling grief about it.  It was mentally and emotionally bothering me to see others doing what was being torn away from me.  I also found frustration and stress when others who could workout high impact, people who had no physical excuse to quit physical fitness, would come to me and quit.  Memories of other members who had left in the past via my office door because their MS was taking a physical toll were hitting close to home for me. Mentally and emotionally, while I was doing my best to put on a brave, positive face with my MS diagnosis, I didn’t want to be in that environment anymore.  I was hurting.  So I changed jobs for something out of the industry and much more sedentary.  I went to work in Customer Service at Toyota.  Was less of a stress and had completely nothing to do with health and wellness.  Little did I know, my full circle would come later and I’d be advocating and comfortable with a health and wellness role again with my own business!

Committing to do the Melbourne

MS Walk Every Year

One thing I decided to do was to attend and fundraise for the Melbourne MS Walk and MS Australia every June.  They did so much in those early days of diagnosis to educate me.  They assisted me via their toll free, volunteer help line in those dark moments where I was most vulnerable.  I cannot tell you how many times I sobbed down the phone line to them in my first few years after MS Diagnosis.  Things can seem pretty bleak, overwhelming and I don’t know about you, but I have had moments of extreme self-pity lows.  Depression and anxiety have had strong holds with me over the years and if it weren’t for others at MS Australia on the other end of the line talking me through and out I don’t know…

 

2009 was my second year after MS Diagnosis and we walked with an official team called MS Glitter Bugs. I was also interviewed by our local paper to raise awareness
2009 was my second year after MS Diagnosis and we walked with an official team called MS Glitter Bugs. I was also interviewed by our local paper to raise awareness

 

My whole family would get involved in the MS Walk early years.  Some years I opted to just go with Craig and our daughter.  I do remember the first couple to be emotional as I walked observing others like me or more progressive.  It was an un-subtle reminder of what life may or may not have in store for me.  My legs would get heavy and I would feel tired.  Sometimes I’d feel like going off on my own for a little cry to myself.  2010, my first with my daughter we discovered CCSVI at the MS Walk (this is for another blog post)  It helped having people around me being so supportive, so very grateful for it.  The MS Walk was one MS-focused event I was ok to be involved.  That and the Wellness Day I attended have been positives… for me, going to peer support meet ups left me deflated rather than empowered.  I personally prefer to stay away from these events and live in my own bubble of reality with my MS.

And so, the early adjustments for me focused around what course of treatment action I would take, lifestyle and exercise, my career and work situation and getting involved in some way with MS – as positive a way as I could.  

 SEE my first MS post MS Diagnosis Journey – When your legs go numb

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