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(17) 3 months post stem cell transplant!!!

  Recovery - not going as well as hoped. Perhaps my expectations exceeded reality! Who would have thought! Apparently, it can take months (which I knew) or years to fully recover. I am not sure I am that patient, but I am going to have to be!! 

Naively, I thought I'd be job & car hunting this month, not the case!  



Mobility has worsened, and I can't walk far without assistance. Despite this, it is important to try and maintain some sort of normalcy although a huge effort. It would be easier to stay in bed, but what would that achieve? So, I have decided, regardless of the challenges, to ramp up therapies and really work harder towards my goal. I have always said I wanted to complete a full marathon before I am 50. I have done 6 half marathons and signed up and trained for a full marathon but pulled an injury 2 weeks out. To say I was devo is an understatement, but one day! 
Marcus says I should focus on walking properly first but I have always said 'go hard or go home'😆
I have started walking outdoors (instead of relying on a mobility scooter) it's slow & like learning to walk again, but it's something, even if it wipes me out for hours afterwards. 

Other therapies: 

  • Personal Training (strengthening) weekly 
  • Physio - exercises/strengthening weekly 
  • Speech therapy weekly 
  • Gym (home) strengthening 3-4 times a week 
  • Walking 3-4 times a week 
  • Eye exercises - gaze stabilizing, most days
  • Writing - something I lost the ability to do neatly, so I practice 3-4 times a week   
Who knew I'd be learning some of the basics again, but here we are. It's like the brain doesn't communicate with the body, slightly annoying, we definitely underestimated the impacts this disease can have and the ability to turn everything upside down. People say they forget they have MS, and I look forward to that day as it currently consumes every second of my day. From how I am going to preserve my energy, how am I going to tackle everyday tasks, what appointments I have, did I get enough sleep to keep my MS happy, to even just getting out of bed, having a shower and getting dressed. Something I took for granted, which is now a major challenge.  


My skin is definitely thicker. I hate my mobility scooter; I find it embarrassing and demeaning. But a counsellor said to me, its temporary, and a means to get out and she made me look at it from a different perspective. I get a lot of looks from people when I use my walker.. I am sure it's more out of curiosity than anything else, and to be honest, I have stopped worrying about it. I am at peace with my disease. I don't like it, but it could always be worse! Most days I have my armor on, and I am ready to fight, some days I have a good cry, feel sorry for myself and cancel everything.
 



Its a bit like when I am asked 'how are you doing' sometimes there are tears, sometimes it's all good. 
Unfortunately, some 'friends' are full of empty promises, lies, don't step up to try and support or understand, and some make a decision for me. Don't. I might be down and out at the moment, but I'm capable of using my brain. I can see straight through what's really going on. 
I don't have the time or patience for that, and for that reason, I have lost some friends. 
A shame, but in my hour of need, it's easier to see the authenticity. I have always said to my girls, Quality over Quantity. 
Some people have said, they don't know what to say.. and that's okay. Me either sometimes but saying something is better than nothing at all.  


Keeping life as normal as possible: just with a few changes and considerations..









 





Falls have become a norm, usually for no apparent reason, just loss of balance. I am worried that one day I will do severe damage, not yet, but I do bruise, pull muscles or jar my back. I have a friend who just happens to have his own remedial massage business, he does home visits for me, I have an excellent physiotherapist, and I have just increased my monthly chiro visits to fortnightly, just in case!  


I have had a couple appointments with my neurologist now, he wasn't able to endorse my trip to Mexico for my HSCT, it is a shame it is not available for MS in Australia as yet. But my neurologist was quite supportive of it post treatment. He remains baffled by my rapid decline, and said my MRIs do not align with my symptoms. Good to know that my lesions are inactive and no more exist. 
  Blood count is also tracking well, haematologist appointments are monthly and going well.   


The Hair 

It is growing back quickly!!!! Grey, lucky me!
It is to soon to tell if I will end up with the 'chemo curl' but it remains thick. I am allowed to colour
 again at 6 months and just try and stop me!! I can't wait to see my lovely hairdressers again! 
Funny story: Marcus commented about how white my scalp was, it had never seen the sun so no surprises there. So, when warm, I would scoot bald (kicking goals!) without my hat; a child said, 
"Look Grandpa, she's bald!!" Thanks Captain Obvious! Got to love the honesty and innocence.
I will keep it short for a while before growing it out again.. 





The long and short of it:
Don't sweat the small stuff
Don't wait, life is unpredictable 
Don't take anything for granted, even the small stuff 











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