Happy 1st HSCT Birthday to me!
22 September 2016 marks the 1 year mark since my Stem Cells were returned to me to rebuild a new, fresh, MS-free immune system.
1 year on and I’m in Adelaide, alone again, having an MRI to confirm that nothing is going on internally as far as MS goes. This is the type of situation where I want the news to be “There is no news; nothing going on; nothing new to report”. I feel confident this is the case.
I am struggling with how to reflect on the year that was. In my last post I said I wanted to give time to a decent post – so I can read it in years to come, Piper can read, etc. You may all want to bow out in about 4 paragraphs…Zzzzz
I had PPMS and I’d had it for 14 years before travelling by myself to Russia – thanks to all of you, my amazing family, friends and super-committee!
I didn’t even know there was a thing called the EDSS (disability scale) before I left, but on leaving for Russia I would say I was a 5.5 – 6.0…and now I’d say I’m a 5.5 – 6.0 which is quite bad disability. I don’t match a lot of the criteria as I can work full days, don’t suffer fatigue etc, but when I look at the walking component and the distance I can walk…5.5 / 6.0 is my number.
I am confident that the HSCT procedure has stopped the progression and that is all I ever went for. A year on however, I must admit that I am (really) struggling with the fact that I am yet to see improvement…even though this was never promised and (if we’re honest) probably not on the cards for me being PPMS and long-time diagnosed – and yet I remain hopeful if not confident. I am just keeping a positive mindset as I think that pays a huge role. But some days…bloody frustrating.
The time in Russia was, as I think I’ve said many times before, one of the most wonderful experiences of my life. I have, on occasions, quite acutely missed being there – food and all! Nah, maybe not the food but definitely being cooked for! Dr Fedorenko, Nicolai, Anastasia, Eirena, Olga…they were the most wonderful people to be cared for by. I know I gushed a lot last year but my admiration for them is through-the-roof and my gratefulness is beyond any measure.
The patients and carers that I was fortunate enough to share the experience with will forever hold a special place in my heart. I think of that saying of “season, reason, lifetime’ and although they were only there for a reason … they are all forever in my heart, if not my daily life. I truly hope they have seen the improvements that I so hope for. I reckon most of them have. Not wanting to ‘name names’ but Betty, Donna, Vanessa, Cecile, Greg, Ken, Mariecka, Dom, Bill, Kim…what a bunch of bloody legends. I feel truly blessed to have been in Russia at the same time as these guys….
This is not a post of ‘thank you’s’ but there was someone that kept in touch with me when I was in Russia who was a true Angel. I’ve actually only met her fleetingly once (maybe twice). She is the cousin of one of my dearest friends….I have gone back and read her messages to me several times this year and her heart and humour, kindness and love were something that helped me so much in Russia, but also in the year since…so thank you Lynne. You were a big part of the experience and a true God-send.
My time at home in lockdown feels like forever ago. I can remember fellow HSCT girls telling me that the time will actually go quite quickly and you’ll wish you had the time again. I had 4 months at home ‘in lockdown’ on my return. It was summer and I wished the time away. But now…how I wish I could have another go at it! I was far too ‘busy’. I’m not crafty but I did so much housework and ‘work work’ because I felt I needed to be doing something – I couldn’t get the concept of REST…couldn’t watch the TV during the day, couldn’t sit in the sun (due to no sun exposure after chemo and heat intolerance). I felt guilty if my husband came home and I wasn’t up and dressed with a clean house – not that he would have given two hoots but that’s how I felt.
I was at 100 days (which is pretty much the end of isolation) on New Year’s Eve. We went to the usual beach town that we’ve gone to since forever but I only lasted 4 days from memory. I was still weak and found the beach just too hard. The population of the town swells and I wasn’t comfortable in crowds so in the end, it was all just too hard.
I went back to work at the beginning of the school year (I work in a school). I have worked 4 days all year and will increase to 5 days (full time) in about 3 weeks’ time – eek! Work is crazy busy and I know that I am not really doing the right thing by myself by pushing myself but….well, I think it’s just my way. A friend’s hubby had an amazing chat to me early in the year and, having lived through something similar, his insights were amazing. He talked about being selfish, putting myself first, being the priority…it all made sense (and still does) but somehow “I” just get swallowed up in the day-to-day and slide down to the end of the priority list…gotta work on that.
I started gym soon after my return. I remember being incredibly weak – weaker than before I left for Russia but that is normal given what your body has been through. My little gym trainer Nikki is wonderful. She’s a kick-arse trainer in her own right but ‘dumbs it all right down' for me. I’m embarrassed at what I can/can't do but it is what it is. I have regained some strength but it’s slow. Man it’s slow. It’s a struggle for me because I was such a gym bunny pre-MS so mostly, I find things frustrating - but I love it after I’ve been. Simple things are so hard. One the hardest things we do is….climb the stairs. Ridiculous. I still can’t lift my legs behind me (like a hamstring curl, bending at the knee). Such simple things. Do. My. Head. In.
I go with my 79 year old dad (who is an instructor for over 50’s at the gym) some nights which is special. I really want to be able to go for a big walk with him and my daughter. He walks 4.5kms each night and has done for over 20..possibly 30 years! That’s been one of my main goals. That and wearing a) heels and b) havianas.
If I think of the year, I would have to say, I have seen glimpses of improvement – but only glimpses. Still….who knows! There is a lady with a similar MS story to mine and she has improved out of this world – mind you, she has completely dedicated her life to getting fit and strong whereas I am struggling to get to the gym more than once a week. This is my ‘area for improvement’. I know it, Nikki knows it, my parents know it….it’s just hard when life gets in the way. As I said, I work 4 full days, I have a 10 year old daughter that needs running around each night for dance, netball, basketball, swimming, acrobatics, I have a husband that works 2 jobs…just life.
Another reason I don’t go to the gym as much as I need to is, by the time I leave…I can barely walk ….like, barely. I need someone to help me to my car, sit and rest a minute before I leave. It’s quite humiliating. If I have Nikki or Dad there, then they will walk me out, but I don’t like to ask anyone else and just stagger along the wall to my car. It’s not pretty. I imagine you can see that I’m pretty independent so this remains a struggle.
As I’ve said above, this year has been pretty low key for me and hence my updates have been …er non-existent unless I’m having a shitty time (as one of my beautiful sis-in-laws highlighted for me)! But my sister is using this year to battle breast cancer…for the 2nd time! I am so in awe of how she has just got on with things. She had an operations in June to remove the cancer, started chemo, lost her hair and so on. She got very sick from the first ‘type’ of chemo and is currently now on weekly infusions….meanwhile working and playing sport. Incredible. She’s very much a ‘no muss, no fuss’ girl!
What else can I say? I pray a lot…for me, my family, other HSCTers, friends….but quite selfishly…I pray for improvement/symptoms to disappear…A LOT. Feel free to join me if that’s your thing! I reckon I’d be pretty awesome fun if I could regain some of my old self. My ‘thing’ is sports, fitness, etc so recently I’ve started to really struggle with the fact that MS took that from me before I took out MS. I messaged a friend last week and explained that craft, cooking (!), painting, etc is just not me. I had grand plans of arranging all my photo’s in photo albums when I was home and it didn’t get touched. Stuff like that feels like ‘work’ to me, not ‘play’. I remember doing some of that adult colouring-in while in Russia and recall that after 2 hours it was just a battle of wills to get it done, rather than the mindfulness activity it is supposed to be!!
After my very public year last year, I’ve enjoyed not talking publicly this year although I was quite proud of a talk I gave to Lions and Rotary. I can post that if you want a read but it’s probably more of the same…it was quite overwhelming suddenly talking about my MS all the time when before, I never talked about it. Ask my friends who were desperate for me to open up! Not because I was embarrassed or anything, I just didn’t want it to define me…but I’d say it has after last year. I think most people look at me and think of me as “Mary with MS who went to Russia”.
As you may have seen, my hair has grown back and is the most ridiculous brown curly mass. I quite passionately hate it but am trying to grow it out. Not that I think there was much to work with to begin with, but losing my hair and having it come back like this…well… :( But whatever. Whenever I look in the mirror I (still) just shake my head. Well played Chemo, well played.
So – moving forward. I’m putting it in writing so that any of you that know me can hold me to this:
1) I gave myself a year to see improvement and if none, was going to look into options to help me. I have an appointment on Friday to trial a WalkAide which is a device that activates your muscles similar to a tens machine. It is supposed to help with ‘drop foot’ so may be useful but as I said last week, I’m already going into the consultation thinking that it’ll be yet another thing that works for everyone, but me. Wrong attitude perhaps??
2) Failing that I will look into trekking poles. I have tried a walking stick but it was useless. I’m thinking trekking poles will be (a) cooler and (b) more steady given you’re not learning on one side.
3) Gym. I NEED to build this to 3-4 times a week. I’m not sure if I’m setting myself up for failure here as, as I said above, I am about to go back to 5 days of work so …. BUT I have to do it.
3) Mediation. I’ve done spasmodically for years but I am…I AM going to do each day.
4) Physio. I’ve started this and will try to use to help my gait.
5) Eating….less chocolate, more fruit. I don’t mind this one as I spent all last summer eating processed food, canned fruit or cooked vegies. Perfectly happy to dig into some salads!
I think that’s it for now. Progress: stopped. Improvement: Nil. Attitude: Positive (but frustrated). Hair: Ridiculous. Heart: Overflowing with Thanks.