I've been thinking about this post for about a week now. How GREAT is Community.
Examples in the last 10 days:
1)
Last weekend, my heart was warmed when I was pictures of a group working on a garden for an incredibly deserving family going through a health battle.
The way people pitch in and get things done is just outstanding. No muss, No fuss. Just get in, have a bit of fun, and get "it" done (whatever "it" may be).
2)
I'm a member of a "HSCT forum" on Facebook. We have been, or are planning to go to Russia (or wherever) for HSCT treatment. One of the forum members (who was off living his amazing new lift post-HSCT) and a horrific accident and it still fighting a battle...he nearly lost his life but through sheer determination, is heading out the other side...all be it, without the use of his legs. How shitty is that post-HSCT which was so successful for him. Anyway - I have not met this legend...but followed his story on facebook and still recall his time in Russia...even though it was a year before my time! Our "Community" on facebook sent videos, messages and kept in constant contact about his condition. I was really heartbroken when I got the news of his accident and my heart breaks that he has lost the use of his legs that he so recently repaired. But the Community was, and is, outstanding.
3)
Again - MS related. Back in 2011 (??) I went on a retreat with fellow MSers to learn about the "Overcoming MS" lifestyle. We spent 5 intense days together, learning new ways to handle this disease (diet, exercise, meditation, attitude). SUCH an outstanding bunch of crazies. Well one of us is going through a rough patch and - just like that - everyone came around her - no matter our own struggles....our hearts bled for this lady and the realisation that she is facing (that even doing 'everything right', she is deteriorating). A beautiful community stands by her.
4)
My work. We have a staff member who is very ill. She is interstate having treatment and is soley supported by her sister. Our work call her, text her and we have all done her a letter (or joke, or prayer, or whatever)...and everyday she has a special shiny black envelope arrive with news of her "school family" at home. (I had this done for me when I got back from Russia and I can say from personal experience, it is SOOOO special). No matter what is in the envelope, it is filled with love and keeps you feeling part of that community.
5)
My work again. We have a gorgeous student who is an incredibly talented singer. She has her own band and is releasing her first EP! Not bad for 15! Our local community and the music community in town is supporting her and her band and their dream! BUT - even though this could selfishly be about her and her dream, the money raised from her function tonight is going to the Leukaemia Foundation...community supporting community supporting community.
6)
Two local sports girls heading to America to play softball. Absolute superstars. Our local community got behind them to help fundraise and support them in any way.
7)
Back to my community when I was raising funds to go to Russia. A little local community supported me like nothing I could have ever imagined! It seriously was RIDICULOUS. I cannot express how humbled I remain to this day and I try to pay it forward whenever I can.
Sadly I have not improved as I had hoped so, getting in and doing 'stuff' is hard so that's a little battle but I love the community's I am blessed to be a part of: my family; school; town; sports teams; gym; friends; faith; and so it goes on. I truly hope to be a blessing in the communities I am fortunate enough to be a part of. I pray my symptoms improve so that I can be a do-er for others.
Friday, 18 August 2017
Wednesday, 21 September 2016
HAPPY 1st HSCT BIRTHDAY TO ME!!!
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.
Mary OUT.
Saturday, 17 September 2016
NOT QUITE THE 1 YEAR UPDATE.
OMG this feels sooooo weird being back on here!! I feel like my room should be brighter...cleaner :) and the food should be more .... adventurous!
This is NOT my one year update because I want to give time and effort to that post. I want to really reflect on the year, thank some people, pay tribute to my sister, whose drawn the 'battle card' this year, thank my amazing family, put my hand up to what I need to do better (R.E.S.T.) and update you all on my progress (it's not exciting trust me).
I am back to working 4 full days (about to be 5 again) and I love my job and the people I work with. Truly - I love it and them. I'm very blessed.
My daughter is doing something every night so while I'm a tad slack at getting to the gym and doing things for myself (sorry Nikki), my daughter is busy and fit and doing great!
Andy, my hubby has returned to normal husband stuff. He works 2 jobs and lives with his "Netflix" addiction.
No. Today's a whinge. One thing I have noticed since coming out of isolation and lock down on my return to Oz...I have become SUCH a recluse! At first it was because of germs and my tendency to be OCD and stress about crowds, hygiene etc... but now it is just because everything remains
SO. DAMN. HARD.
As I said above, I love my job....love it. But unfortunately that is all I do. I am so frustrated that I haven't got the improvement yet that I so (SOOOOOOOOO dearly) hoped and prayed for.
My standard line when anyone asks how I am is "Fine. Back to 'my normal'. No improvement but the procedure has NEVER claimed to improve symptoms and only ever claimed to stop the progression". So it's been successful.
I knew this CLEARLY when I went to Russia and I can promise you all I have absolutely no regrets (in fact it was one of the most amazing times of my life) but you know....I prayed really frigging hard for just SOME improvement. Just to walk 'normally' - for a distance . Not run; Not skip; Not revive my netty career...just to be able to [go for a] walk. And yeah - that hasn't happened.
I am back to how I was before I left for Russia.
I am having an MRI next week to confirm that nothing is going on and I'm confident we've stopped the beast, so I'm not stressed about that.
Today was a big Netball / Football day for Mount Gambier. I LOVE netball ... (although can take or leave football)! and I knew someone playing in just about every game that I would have loved to watch. In fact my sister was playing her final game. She's busy kicking cancer's butt in her down time so I really would have loved to have gone and seen her last game before she retires.
But - the idea of walking between courts, toilets, football, food van and even walking from the car to the courts (which would be miles away as 3/4 of Mount Gambier would have been there) was just too much. I have no walk aids and no one has ever recommended....but I am starting to accept I need ... something. And That sucks eggs.
I'm trialling a WalkAide machine that might be great. Here's hoping. I'm thinking about getting trekking poles as I know of another lady who uses them and pushes out 10km walks! Whaaaattt!
Who is supposed to tell you this stuff? Seriously. After seeing someone comment on a forum I'm on, I bought a 'diktus band' online last week - who even knows what the hell that is - but it doesn't work for me or I've bought the wrong one or whatever. I've had nobody fit it for me or shown me what to do so I've tried following the 1/4 page instructions and well, it's not working for me - I'm doing this all alone. Should I be researching more? There's gotta be someone that sees me 'walking' that thinks "Hey! I know what would be awesome for her"...right? Frustrating much. So maybe the WalkAide will be great....but I'm going in already expecting it to be another thing that doesn't work for me.
Anyhoo - I've spent the day alone (my house looks amazing) and just a touch frustrated and how much MS managed to destroy my life before I destroyed it.
I've started to think about Summer. We're going to Queensland and it's going to be hot. I currently will find it incredibly hard to walk on the beach...or anywhere for that matter. So I'm stressed about it, whereas in my old life I'd be counting the days and planning day trips, beach days versus shopping days etc. Holidays / travel stresses me out so much these days...and I love(d) travelling...
Trust me - walking on the beach is so awesome when you're able...but when you aren't - it's a bitch. I can't even find suitable frigging shoes because I need a closed in toe and a heel....to wear to the beach(??!!)...in summer. Honestly. :(
Then I'm thinking about this pop-up bar in town. That'll be going again this summer and Andy tells me it's awesome. But I can't go there. Walking, bar, standing around chatting, toilets + alcohol....does not work.
So I'm frustrated.
I'm not sad, not crying, nothing like that. I'm just so frustrated and SO ready for prayers to be answered and improvement seen so I can be an active member of my family, community, work, friendship groups and so on. I want to re-engage with society but I just do not want to do it like this. Blah.
I seriously need to walk around the Blue Lake with my dad and daughter sometime soon.
OK - that's it. Mary out.
PS - Well done to all teams today!!! Hope you're partying way harder than you know you should be!
PSS - APPRECIATE the little things. Walking, dancing, running, shopping, thongs, converse sneakers....I miss it all sooooooooooooo much.
This is NOT my one year update because I want to give time and effort to that post. I want to really reflect on the year, thank some people, pay tribute to my sister, whose drawn the 'battle card' this year, thank my amazing family, put my hand up to what I need to do better (R.E.S.T.) and update you all on my progress (it's not exciting trust me).
I am back to working 4 full days (about to be 5 again) and I love my job and the people I work with. Truly - I love it and them. I'm very blessed.
My daughter is doing something every night so while I'm a tad slack at getting to the gym and doing things for myself (sorry Nikki), my daughter is busy and fit and doing great!
Andy, my hubby has returned to normal husband stuff. He works 2 jobs and lives with his "Netflix" addiction.
No. Today's a whinge. One thing I have noticed since coming out of isolation and lock down on my return to Oz...I have become SUCH a recluse! At first it was because of germs and my tendency to be OCD and stress about crowds, hygiene etc... but now it is just because everything remains
SO. DAMN. HARD.
As I said above, I love my job....love it. But unfortunately that is all I do. I am so frustrated that I haven't got the improvement yet that I so (SOOOOOOOOO dearly) hoped and prayed for.
My standard line when anyone asks how I am is "Fine. Back to 'my normal'. No improvement but the procedure has NEVER claimed to improve symptoms and only ever claimed to stop the progression". So it's been successful.
I knew this CLEARLY when I went to Russia and I can promise you all I have absolutely no regrets (in fact it was one of the most amazing times of my life) but you know....I prayed really frigging hard for just SOME improvement. Just to walk 'normally' - for a distance . Not run; Not skip; Not revive my netty career...just to be able to [go for a] walk. And yeah - that hasn't happened.
I am back to how I was before I left for Russia.
I am having an MRI next week to confirm that nothing is going on and I'm confident we've stopped the beast, so I'm not stressed about that.
Today was a big Netball / Football day for Mount Gambier. I LOVE netball ... (although can take or leave football)! and I knew someone playing in just about every game that I would have loved to watch. In fact my sister was playing her final game. She's busy kicking cancer's butt in her down time so I really would have loved to have gone and seen her last game before she retires.
But - the idea of walking between courts, toilets, football, food van and even walking from the car to the courts (which would be miles away as 3/4 of Mount Gambier would have been there) was just too much. I have no walk aids and no one has ever recommended....but I am starting to accept I need ... something. And That sucks eggs.
I'm trialling a WalkAide machine that might be great. Here's hoping. I'm thinking about getting trekking poles as I know of another lady who uses them and pushes out 10km walks! Whaaaattt!
Who is supposed to tell you this stuff? Seriously. After seeing someone comment on a forum I'm on, I bought a 'diktus band' online last week - who even knows what the hell that is - but it doesn't work for me or I've bought the wrong one or whatever. I've had nobody fit it for me or shown me what to do so I've tried following the 1/4 page instructions and well, it's not working for me - I'm doing this all alone. Should I be researching more? There's gotta be someone that sees me 'walking' that thinks "Hey! I know what would be awesome for her"...right? Frustrating much. So maybe the WalkAide will be great....but I'm going in already expecting it to be another thing that doesn't work for me.
Anyhoo - I've spent the day alone (my house looks amazing) and just a touch frustrated and how much MS managed to destroy my life before I destroyed it.
I've started to think about Summer. We're going to Queensland and it's going to be hot. I currently will find it incredibly hard to walk on the beach...or anywhere for that matter. So I'm stressed about it, whereas in my old life I'd be counting the days and planning day trips, beach days versus shopping days etc. Holidays / travel stresses me out so much these days...and I love(d) travelling...
Trust me - walking on the beach is so awesome when you're able...but when you aren't - it's a bitch. I can't even find suitable frigging shoes because I need a closed in toe and a heel....to wear to the beach(??!!)...in summer. Honestly. :(
Then I'm thinking about this pop-up bar in town. That'll be going again this summer and Andy tells me it's awesome. But I can't go there. Walking, bar, standing around chatting, toilets + alcohol....does not work.
So I'm frustrated.
I'm not sad, not crying, nothing like that. I'm just so frustrated and SO ready for prayers to be answered and improvement seen so I can be an active member of my family, community, work, friendship groups and so on. I want to re-engage with society but I just do not want to do it like this. Blah.
I seriously need to walk around the Blue Lake with my dad and daughter sometime soon.
OK - that's it. Mary out.
PS - Well done to all teams today!!! Hope you're partying way harder than you know you should be!
PSS - APPRECIATE the little things. Walking, dancing, running, shopping, thongs, converse sneakers....I miss it all sooooooooooooo much.
Saturday, 6 February 2016
MY MS SYMPTOMS
Have I ever even told you what my MS symptoms are?
I was diagnosed with MS back in January 2002 after I starting tripping on the treadmill at gym. I had symptoms well before that and spent 6 months in 2001 with a sports physio who thought the problem was my knocked knees. Then one day I went straight from the gym to the physio with my weak leg and said "This!! What is THIS?" He knew straight away and sent me for a MRI and lumber puncture which confirmed MS.
I was incredibly fortunate in that my MS progressed slowly (although was still enough to totally derail my rather excellent lifestyle). Looking back at 'now versus then' I thought I was so bad 'back then' when I'd give anything to be as 'bad' as I was when diagnosed! (excuse all the inverted comma's)!
I have..no, no I HAD Primary Progressive MS (PPMS) which is less common that Relapsing Remitting MS (RRMS). When I had MS (pre HSCT :) ) I didn't have MS attacks (where you have an exacerbation but then slowly recover) but I always had trouble with my gait. This is the least common MS.
I have lived with a weak left leg since before 2002 and its major problem is 'drop foot'. This is when your foot doesn't lift and flex so I tend to 'drag and slap' my foot along when I walk.
My gait has slowly gotten worse and the distance I can walk has greatly reduced over time...but I must remain thankful that not too much else went wrong.
My bladder / bowel developed problems somewhere along the way and I have urgency issues which is quite common in MS.
About 18 months ago, my right leg decided to start playing up. I was on the Gold Coast for a friends wedding and a group of us were at a Gold Coast Suns Game. My girlfriend had to help me to our seats when I realised..."Hang on...My right leg is being the b*tch!...What The??" It is totally different to my left leg! It doesn't have drop foot but is weak, has a deep 'bone ache', and tends to want to 'fold in' at the knee (so the whole knocked knees thing coming back).
Over the years, I've noticed that my left arm is not as strong as my right (which is weird because I'm left-handed) and I don't have the hand coordination I used to - which I can only notice when tying things or 'twinkling' my fingers so has not really been a consideration. I still type around 85wpm like a boss! :)
So - all in all - I don't need much improvement compared to some....but I just so dearly want these legs working again. I mean - how warped is it that I have bladder issues with legs that can't rush to the loo .....
I shouldn't be typing this today as I'm not in the right mindset but honestly - I just pray and pray (and pray and pray) for improvement. I know I have stopped the beast that is MS and I am so incredibly grateful and thankful that I had the opportunity to have HSCT....now I just want more. I find myself jealous of those with RRMS that are seeing improvements after only a month home. I'm SUPER CRAZY happy for them....I just want it too.
I've read about other patients with PPMS and their recovery and any improvements have taken longer but there have been improvements. One lady blows my mind with what she can do now (hiking and the like). So I just need to keep looking forward and staying POSITIVE.
At least I know now that 'this is it'. We ran into a friend yesterday whose wife had troubles a few years back (not MS related) and he told us that he used to say to her: "Every day that is 'just the same' as yesterday is a GOOD day! You are no worse." I need to get my head back into that mindset.
Thanks for listening! Mary OUT.
I was diagnosed with MS back in January 2002 after I starting tripping on the treadmill at gym. I had symptoms well before that and spent 6 months in 2001 with a sports physio who thought the problem was my knocked knees. Then one day I went straight from the gym to the physio with my weak leg and said "This!! What is THIS?" He knew straight away and sent me for a MRI and lumber puncture which confirmed MS.
I was incredibly fortunate in that my MS progressed slowly (although was still enough to totally derail my rather excellent lifestyle). Looking back at 'now versus then' I thought I was so bad 'back then' when I'd give anything to be as 'bad' as I was when diagnosed! (excuse all the inverted comma's)!
I have..no, no I HAD Primary Progressive MS (PPMS) which is less common that Relapsing Remitting MS (RRMS). When I had MS (pre HSCT :) ) I didn't have MS attacks (where you have an exacerbation but then slowly recover) but I always had trouble with my gait. This is the least common MS.
I have lived with a weak left leg since before 2002 and its major problem is 'drop foot'. This is when your foot doesn't lift and flex so I tend to 'drag and slap' my foot along when I walk.
My gait has slowly gotten worse and the distance I can walk has greatly reduced over time...but I must remain thankful that not too much else went wrong.
My bladder / bowel developed problems somewhere along the way and I have urgency issues which is quite common in MS.
About 18 months ago, my right leg decided to start playing up. I was on the Gold Coast for a friends wedding and a group of us were at a Gold Coast Suns Game. My girlfriend had to help me to our seats when I realised..."Hang on...My right leg is being the b*tch!...What The??" It is totally different to my left leg! It doesn't have drop foot but is weak, has a deep 'bone ache', and tends to want to 'fold in' at the knee (so the whole knocked knees thing coming back).
Over the years, I've noticed that my left arm is not as strong as my right (which is weird because I'm left-handed) and I don't have the hand coordination I used to - which I can only notice when tying things or 'twinkling' my fingers so has not really been a consideration. I still type around 85wpm like a boss! :)
So - all in all - I don't need much improvement compared to some....but I just so dearly want these legs working again. I mean - how warped is it that I have bladder issues with legs that can't rush to the loo .....
I shouldn't be typing this today as I'm not in the right mindset but honestly - I just pray and pray (and pray and pray) for improvement. I know I have stopped the beast that is MS and I am so incredibly grateful and thankful that I had the opportunity to have HSCT....now I just want more. I find myself jealous of those with RRMS that are seeing improvements after only a month home. I'm SUPER CRAZY happy for them....I just want it too.
I've read about other patients with PPMS and their recovery and any improvements have taken longer but there have been improvements. One lady blows my mind with what she can do now (hiking and the like). So I just need to keep looking forward and staying POSITIVE.
At least I know now that 'this is it'. We ran into a friend yesterday whose wife had troubles a few years back (not MS related) and he told us that he used to say to her: "Every day that is 'just the same' as yesterday is a GOOD day! You are no worse." I need to get my head back into that mindset.
Thanks for listening! Mary OUT.
DAY +138 - CRAP DAY
You know, I think I keep a fairly upbeat, positive nature most of the time (although my husband may tell you different)...but today....today is a sh*t day.
It's a glorious Sunday here today. 25 degrees, sunny, no wind...just beautiful.
I should be happy right? I mean...I'm blessed! I have a supportive family, awesome friends, I love my job, I have a great house...
But here's my day:
My daughter is at a birthday party but I couldn't even go drop her off as it's in a park and they were set up about ....oh...50 metres from where we parked and today, Today - I just can't make that distance....
So my hubby drops her off and we go to pick up our Click and Collect groceries and shop or our fruit and veg (as you do when you're kid free). We thought we'd shout ourselves a coffee/tea before we went in but today I could barely walk from the car park to the coffee shop. However, we made it (thankfully my hubby is strong and holds my hand) and sat down to a coffee/tea/bite to eat. Relaxing? No. Nature (as she invariably does) decided to call and I had to walk (again ONLY) about 50 metres in a shopping mall (so nice, smooth tiles) to the bathrooms and I barely made it....like just barely...I was sweating! SOOOOOOOO frustrating.
By the time I got back to hubby, my legs were shaking uncontrollably and I asked to go back to the car to wait while he did the grocery run around. I have never done this before.
I am so frustrated. SO frustrated. I can't even type coherently....
I KNOW HSCT stopped my MS. I KNOW I may never see improvement. I KNOW all this but I want improvement SOOOOO bad. I KNOW this attitude at the moment doesn't help (and it is rare) but I'm just SOOOO p*ssed. WHY didn't I do HSCT sooner? WHY am I having to live like this? The ol' "WHY ME" is rearing its ugly head. I'd be SUCH an awesome, active, busy, fun mum and wife without these 'MS leftovers'. Ugh.
Sorry for the vent. I pray daily for improvement now. I KNOW I'm selfish - all I wanted from HSCT was to stop MS and it's done that. I know it has....now I just want more.
Ugh. I hate when I'm like this. I'm teary, frustrated, miserable. My poor Hubby and Daughter.
And on such a beautiful day. We should be canoeing, SUPing, riding our bikes....instead, I'm sitting in front of the computer in tears; Piper (thankfully) is blissfully unaware at her friend's party; and poor Andy has no idea what to do so has retreated to Bunnings (no doubt bored with our marriage)....
Ugh. I am NOT this person. In the words of the GREAT Taylor Swift....I need to 'Shake it Off'....
It's a glorious Sunday here today. 25 degrees, sunny, no wind...just beautiful.
I should be happy right? I mean...I'm blessed! I have a supportive family, awesome friends, I love my job, I have a great house...
But here's my day:
My daughter is at a birthday party but I couldn't even go drop her off as it's in a park and they were set up about ....oh...50 metres from where we parked and today, Today - I just can't make that distance....
So my hubby drops her off and we go to pick up our Click and Collect groceries and shop or our fruit and veg (as you do when you're kid free). We thought we'd shout ourselves a coffee/tea before we went in but today I could barely walk from the car park to the coffee shop. However, we made it (thankfully my hubby is strong and holds my hand) and sat down to a coffee/tea/bite to eat. Relaxing? No. Nature (as she invariably does) decided to call and I had to walk (again ONLY) about 50 metres in a shopping mall (so nice, smooth tiles) to the bathrooms and I barely made it....like just barely...I was sweating! SOOOOOOOO frustrating.
By the time I got back to hubby, my legs were shaking uncontrollably and I asked to go back to the car to wait while he did the grocery run around. I have never done this before.
I am so frustrated. SO frustrated. I can't even type coherently....
I KNOW HSCT stopped my MS. I KNOW I may never see improvement. I KNOW all this but I want improvement SOOOOO bad. I KNOW this attitude at the moment doesn't help (and it is rare) but I'm just SOOOO p*ssed. WHY didn't I do HSCT sooner? WHY am I having to live like this? The ol' "WHY ME" is rearing its ugly head. I'd be SUCH an awesome, active, busy, fun mum and wife without these 'MS leftovers'. Ugh.
Sorry for the vent. I pray daily for improvement now. I KNOW I'm selfish - all I wanted from HSCT was to stop MS and it's done that. I know it has....now I just want more.
Ugh. I hate when I'm like this. I'm teary, frustrated, miserable. My poor Hubby and Daughter.
And on such a beautiful day. We should be canoeing, SUPing, riding our bikes....instead, I'm sitting in front of the computer in tears; Piper (thankfully) is blissfully unaware at her friend's party; and poor Andy has no idea what to do so has retreated to Bunnings (no doubt bored with our marriage)....
Ugh. I am NOT this person. In the words of the GREAT Taylor Swift....I need to 'Shake it Off'....
Thursday, 14 January 2016
DAY + 115 - WHAT CAN I TELL YOU?
I can't believe my last post was late November! That's disgusting! Hopefully you have all been far too busy enjoying Christmas, New Years, Summer and holidays to worry about reading my blog!
I had a quiet Christmas but was pretty stoked at myself for doing ALL my Christmas shopping via the world wide web!! No car park squabbles; no sneaking out without my daughter; no going from shop to shop trying to find things etc! One thing I was bummed about was we didn't get out annual Christmas photo with Santa....BUT I'm guessing he'll be at the shopping centre next year and it will be a story to tell when we're explaining WHY there is no 2015 photo! As for the online shopping - I'm seriously considering doing the same this year!! It was bloody brilliant!
We had Christmas lunch with my family and dinner with my hubby's brother and cousin and their families (his parents and other brother live in Qld)....so pretty low key. I missed out on going to Christmas Eve Mass (which I LOVE) and missed any and all Chrissy get togethers and drinks ... but not to worry... there's always this year!
On New Year's Eve, I reached +100 days (since transplant) and this meant I was allowed to start to get out and re-connect with the world!! I am (still) a little hesitant in this regard but we did go to Robe (a local beach village that I LOVE) for 4 days. It was MUCH different this year though as I didn't get to the beach much or down the street (as the population of the town swells to incredible numbers over Summer), but I did go for coffee (of course), 1 day at the beach digging holes with my daughter, the ice cream shop etc. We had a nail salon night and played board games and such with the kids at night so enjoyed lots of laughs with family and friends!
I headed up to Adelaide from Robe and saw my Haematologist on 4 January. My bloods were again all within the normal range and he gave me the green light to get out and about more and 'carry on' with life. So this is exciting even though I'm still being careful. I haven't really done too much with this new-found freedom. I went to a quiet session at the movies; went out for dinner for my mums birthday; more coffee; gone to mum and dad's for a swim....so not much at all. I'm yet to venture into a department store or grocery store (or any crowded venue) as yet but I'm heading back to work NEXT WEEK so things will get back to (safe) normal quite quickly!
I'm so excited about returning to work. The first couple of weeks will be with skeleton staff and no students (who I don't deal with anyway), and then the term starts! I'm not too nervous about this as I work in an office by myself and everyone is aware of my situation. I am starting back part-time and will build from there! My work has been INCREDIBLE and I can't wait to be back there!
Unfortunately, I am yet to see any improvements in my symptoms but the procedure only ever claimed to HALT the disease. Many patients (I mean MANY) have had marked improvement in their symptoms so I now (selfishly) want that too (whereas before I just wanted to stop it)! After reading many other patient blogs, I understand that improvements can take a while to become apparent - especially considering I had Primary Progressive MS and had it for so long (14 years) but I pray and hope that this year will see me walking better, faster, longer etc...and hopefully in a) heels and b) thongs! I don't see my netball career being resurrected but it WOULD be nice to ACTIVELY participate in my daughter's/hubby's life a bit more, walk along the beach, shop for more than 5 mins in a shopping centre, walk to the park etc.
What else can I document...Oh yes - I have TERRIBLE nights! My legs ache and I have this restlessness with them so I'm tossing and turning all night! I'm also having hot spells (only at night) so the quilt is on/off/on/off also. Imagine this for my husband: tossing, turning, sighing, throwing covers off, turning, putting covers back on...daughter coming in a 2am (Argh!)....too hot, turn over, too cold, stretch, back hurts; curl up...nope - stretch out again....oops- too hot...covers off and so on. All night, every night! This is a concern with work looming! :)
I'm wondering if the hot flushes are the start of menopause (OMG when did I get so OLD). I understand that this can be brought on by the procedure and I haven't had a period in 3 months so....yeah - there's that. Time will tell I guess and I'm not particularly fussed either way.
My hair is SLOWLY growing back and I'm comfortable not wearing a wig or scarf even though I know I look hideous. I'm used to it now and "it is what it is" so I will just persevere with it. It is definitely not blonde anymore and I think it's coming back fluffy and GREY (to add to the menopause above)! Oh well - it IS growing so let's just be thankful for that!! :)
As I'm sure to have told you, I started some PT work. We stopped over Chrissy / New Year and I have been so slack with bike riding (I have a stationary bike here) and doing my home exercises. It's been HOT here in SA and I am embarrassed to say it just fell by the wayside with Christmas, New Year, Robe, school holidays etc. My whole exercise regime at home takes about 30 mins so I have no excuse but I will start with gusto again next week. I have put it out there now (to you all) so I have to come through with the goods! I'm also starting a 30 day clean eating 'challenge' in February and starting to take some supplements....so come March - I'll be FAB-U-LOUS I'm sure!
If you don't know me, I am fairly small naturally but have been housing a rather um..."spongy" belly since my return from Russia. I am (still) telling myself that this is WITHOUT DOUBT bloating due to the steroids I had in Russia but ... 3.5 months down the track I'm not sure how much longer I can convince myself of this!! :) Mind you - in my defence, I haven't been able to eat fresh fruit and veg since my return so I've eaten a lot of processed...er....crap (I've also been eating tuna, rice, steamed veggies, protein etc as much as I can....but who can turn down a packet of Kettle Chips)?! I'm finally allowed to eat fresh fruit and veg and we've enjoyed lots of salads with (overly) washed fruit and veg!! (Yes - I'm a tad OCD)! I cannot tell you how great Watermelon tastes after you've been denied it for a few months...in Summer!!!!! Oh my Lord!!
Okay - I think that's really it for now! Thank you for your continued support! I remain positive and thankful to you all and for the opportunity to have this amazing treatment!
Let's hope my next entry talks about the incredible improvement in my gait and all things wonderful!
Love to all! Mary OUT.
I had a quiet Christmas but was pretty stoked at myself for doing ALL my Christmas shopping via the world wide web!! No car park squabbles; no sneaking out without my daughter; no going from shop to shop trying to find things etc! One thing I was bummed about was we didn't get out annual Christmas photo with Santa....BUT I'm guessing he'll be at the shopping centre next year and it will be a story to tell when we're explaining WHY there is no 2015 photo! As for the online shopping - I'm seriously considering doing the same this year!! It was bloody brilliant!
We had Christmas lunch with my family and dinner with my hubby's brother and cousin and their families (his parents and other brother live in Qld)....so pretty low key. I missed out on going to Christmas Eve Mass (which I LOVE) and missed any and all Chrissy get togethers and drinks ... but not to worry... there's always this year!
On New Year's Eve, I reached +100 days (since transplant) and this meant I was allowed to start to get out and re-connect with the world!! I am (still) a little hesitant in this regard but we did go to Robe (a local beach village that I LOVE) for 4 days. It was MUCH different this year though as I didn't get to the beach much or down the street (as the population of the town swells to incredible numbers over Summer), but I did go for coffee (of course), 1 day at the beach digging holes with my daughter, the ice cream shop etc. We had a nail salon night and played board games and such with the kids at night so enjoyed lots of laughs with family and friends!
I headed up to Adelaide from Robe and saw my Haematologist on 4 January. My bloods were again all within the normal range and he gave me the green light to get out and about more and 'carry on' with life. So this is exciting even though I'm still being careful. I haven't really done too much with this new-found freedom. I went to a quiet session at the movies; went out for dinner for my mums birthday; more coffee; gone to mum and dad's for a swim....so not much at all. I'm yet to venture into a department store or grocery store (or any crowded venue) as yet but I'm heading back to work NEXT WEEK so things will get back to (safe) normal quite quickly!
I'm so excited about returning to work. The first couple of weeks will be with skeleton staff and no students (who I don't deal with anyway), and then the term starts! I'm not too nervous about this as I work in an office by myself and everyone is aware of my situation. I am starting back part-time and will build from there! My work has been INCREDIBLE and I can't wait to be back there!
Unfortunately, I am yet to see any improvements in my symptoms but the procedure only ever claimed to HALT the disease. Many patients (I mean MANY) have had marked improvement in their symptoms so I now (selfishly) want that too (whereas before I just wanted to stop it)! After reading many other patient blogs, I understand that improvements can take a while to become apparent - especially considering I had Primary Progressive MS and had it for so long (14 years) but I pray and hope that this year will see me walking better, faster, longer etc...and hopefully in a) heels and b) thongs! I don't see my netball career being resurrected but it WOULD be nice to ACTIVELY participate in my daughter's/hubby's life a bit more, walk along the beach, shop for more than 5 mins in a shopping centre, walk to the park etc.
What else can I document...Oh yes - I have TERRIBLE nights! My legs ache and I have this restlessness with them so I'm tossing and turning all night! I'm also having hot spells (only at night) so the quilt is on/off/on/off also. Imagine this for my husband: tossing, turning, sighing, throwing covers off, turning, putting covers back on...daughter coming in a 2am (Argh!)....too hot, turn over, too cold, stretch, back hurts; curl up...nope - stretch out again....oops- too hot...covers off and so on. All night, every night! This is a concern with work looming! :)
I'm wondering if the hot flushes are the start of menopause (OMG when did I get so OLD). I understand that this can be brought on by the procedure and I haven't had a period in 3 months so....yeah - there's that. Time will tell I guess and I'm not particularly fussed either way.
My hair is SLOWLY growing back and I'm comfortable not wearing a wig or scarf even though I know I look hideous. I'm used to it now and "it is what it is" so I will just persevere with it. It is definitely not blonde anymore and I think it's coming back fluffy and GREY (to add to the menopause above)! Oh well - it IS growing so let's just be thankful for that!! :)
As I'm sure to have told you, I started some PT work. We stopped over Chrissy / New Year and I have been so slack with bike riding (I have a stationary bike here) and doing my home exercises. It's been HOT here in SA and I am embarrassed to say it just fell by the wayside with Christmas, New Year, Robe, school holidays etc. My whole exercise regime at home takes about 30 mins so I have no excuse but I will start with gusto again next week. I have put it out there now (to you all) so I have to come through with the goods! I'm also starting a 30 day clean eating 'challenge' in February and starting to take some supplements....so come March - I'll be FAB-U-LOUS I'm sure!
If you don't know me, I am fairly small naturally but have been housing a rather um..."spongy" belly since my return from Russia. I am (still) telling myself that this is WITHOUT DOUBT bloating due to the steroids I had in Russia but ... 3.5 months down the track I'm not sure how much longer I can convince myself of this!! :) Mind you - in my defence, I haven't been able to eat fresh fruit and veg since my return so I've eaten a lot of processed...er....crap (I've also been eating tuna, rice, steamed veggies, protein etc as much as I can....but who can turn down a packet of Kettle Chips)?! I'm finally allowed to eat fresh fruit and veg and we've enjoyed lots of salads with (overly) washed fruit and veg!! (Yes - I'm a tad OCD)! I cannot tell you how great Watermelon tastes after you've been denied it for a few months...in Summer!!!!! Oh my Lord!!
Okay - I think that's really it for now! Thank you for your continued support! I remain positive and thankful to you all and for the opportunity to have this amazing treatment!
Let's hope my next entry talks about the incredible improvement in my gait and all things wonderful!
Love to all! Mary OUT.
Thursday, 26 November 2015
ADELAIDE VISIT TO DR WICKHAM
So Mum and I went to Adelaide on 5 November for me to see Dr Wickham (my haematologist)!
This was supposed to be an easy day trip - up at 10.15am, back by 5pm.
We caught the 10.15am flight without incident. As we drove out to the airport, mum told me how she used to ride to school from Sunnybrae Road....when she was about 5 years old!!!! Oh my goodness times have changed! No way would I let my daughter ride her bike to school...and she's 9!
Anyway, I digress. We went straight to the Doctor's clinic and had a coffee in their coffee shop until my 1.20pm appointment.
Dr W was fantastic and said all my bloods are normal which is fantastic! He was happy with how everything is going and after a good chat and a couple of mouth swabs I was good to go.
He gave me antibiotics for my ongoing sinus infection (that'll be 4 weeks of antibiotics) as I just can't shake it. He also gave me 6 month prescriptions for Bactrim and Valtrex.
I've been so lucky with Doctors as he's just brilliant. He's so helpful with the 'travelling from Mt Gambier' thing too and I don't have to see him again until 4 January (I will see Ronan in December for bloods)....
So - we finished with Dr W and went straight back to the airport. We paid $100 to get on the earlier (3.45pm) flight. We hadn't had lunch but (I don't know about poor mum) but I was fine.
We used a wheelchair and thank goodness we did as the story goes on (plus Gate 10 is a million miles away (as I know from previous trips))!
So we got on the 3.45pm flight (me all masked up etc). About 20 minutes from Mt Gambier, the plane turned around due to a technical fault and went all the way back to Adelaide. We disembarked and went back to wait in the airport. The 5.10pm flight left (which we were originally supposed to be on) left and we left again soon after (that $100 for the earlier flight didn't go far!).
This time we made it all the way to Mt G before circling around for about 1/2 hour above the fog before once again heading back to Adelaide. By now it was about 9pm! Once we arrived back in Adelaide they explained there would be no flights to Mt G and we had to find our own accommodation in Adelaide, then we were to ring REX at 5.30am to find out our new flight time.
What The??!!
So mum and I went and stayed at Glenelg and had a much needed Pizza for tea! Me and Mum both without medications and me being on 2 flights and the airport when I'm supposed to be avoiding germs! GREAT!
I rang at 5.30am the next morning and we got on a 10.40am flight! Oh Man! Even with 3 flights grounded the day before, they didn't fill up the flight and others had to wait until 3.40pm!! C RAZY!
Anyway - all's well that ends well but Oh My Goodness what a debacle! Thank Goodness I had my mum with me!
Another girl on the flight was fabulous and helped with a wheelchair etc and our stewardess was also fantastic (by chance, we also had her the following morning)!
We've already decided that we're driving in January!!
This was supposed to be an easy day trip - up at 10.15am, back by 5pm.
We caught the 10.15am flight without incident. As we drove out to the airport, mum told me how she used to ride to school from Sunnybrae Road....when she was about 5 years old!!!! Oh my goodness times have changed! No way would I let my daughter ride her bike to school...and she's 9!
Anyway, I digress. We went straight to the Doctor's clinic and had a coffee in their coffee shop until my 1.20pm appointment.
Dr W was fantastic and said all my bloods are normal which is fantastic! He was happy with how everything is going and after a good chat and a couple of mouth swabs I was good to go.
He gave me antibiotics for my ongoing sinus infection (that'll be 4 weeks of antibiotics) as I just can't shake it. He also gave me 6 month prescriptions for Bactrim and Valtrex.
I've been so lucky with Doctors as he's just brilliant. He's so helpful with the 'travelling from Mt Gambier' thing too and I don't have to see him again until 4 January (I will see Ronan in December for bloods)....
So - we finished with Dr W and went straight back to the airport. We paid $100 to get on the earlier (3.45pm) flight. We hadn't had lunch but (I don't know about poor mum) but I was fine.
We used a wheelchair and thank goodness we did as the story goes on (plus Gate 10 is a million miles away (as I know from previous trips))!
So we got on the 3.45pm flight (me all masked up etc). About 20 minutes from Mt Gambier, the plane turned around due to a technical fault and went all the way back to Adelaide. We disembarked and went back to wait in the airport. The 5.10pm flight left (which we were originally supposed to be on) left and we left again soon after (that $100 for the earlier flight didn't go far!).
This time we made it all the way to Mt G before circling around for about 1/2 hour above the fog before once again heading back to Adelaide. By now it was about 9pm! Once we arrived back in Adelaide they explained there would be no flights to Mt G and we had to find our own accommodation in Adelaide, then we were to ring REX at 5.30am to find out our new flight time.
What The??!!
So mum and I went and stayed at Glenelg and had a much needed Pizza for tea! Me and Mum both without medications and me being on 2 flights and the airport when I'm supposed to be avoiding germs! GREAT!
I rang at 5.30am the next morning and we got on a 10.40am flight! Oh Man! Even with 3 flights grounded the day before, they didn't fill up the flight and others had to wait until 3.40pm!! C RAZY!
Anyway - all's well that ends well but Oh My Goodness what a debacle! Thank Goodness I had my mum with me!
Another girl on the flight was fabulous and helped with a wheelchair etc and our stewardess was also fantastic (by chance, we also had her the following morning)!
We've already decided that we're driving in January!!
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