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.
Saturday, 6 February 2016
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!!
Wednesday, 25 November 2015
DAY +65 (SINCE TRANSPLANT)...
Well Hello Hello! I know it's been a while since my last update, but I really don't have too much to report! I am now at Day+65 which means it was 65 days ago that I had my stem cells transplanted back into my body.
I have been on 'house arrest' since I got home from Russia (I think Oscar Pistorius is doing it wrong!!) This basically means no visitors, no going out in public other than when necessary (eg Doctor visits) etc. When I originally came home, after being told my bloods were all normal, I had a few people over (my BFF, my sisters (who stood either outside or 5 metres away from me), Mum and Dad, a friend from work etc) but I was told by fellow HSCT patients who have gone before me - that it was FAR too early to be receiving visitors! Oops!
So now I have become quite anxious about going out and having people over, even though my Haematologist says it is fine as long as they are not sick. My bloods are in the normal range and have been since I returned...He also said I was fine to go out but to be sensible (eg no crowds) but I really am quite panicky about it all !
A fellow patient and friend (who arrived in Russia 2 weeks after me) has contracted whooping cough and she was following all the rules perfectly so that freaked me out too! (she's doing fine by the way)...
I have not kissed my daughter or hubby on the lips since returning but have to have cuddles with Piper (oh - and Andy) each night when we are reading or talking about the day etc. Hand hygiene is my big thing and poor Pipes can't cough without me hollering for her to get the Purell !!
This week, I have started doing PT with a friend here in my home town. I feel quite pathetic with what I can/can't do but I also know that we have to start somewhere. It's incredibly frustrating when (in my 'glory days') I was at the gym EVERY DAY doing 2 classes, treadmill, bike, rower...etc. I feel like I should be able to walk back in and at least do the basics but everything is so bloody hard and my weights are embarrassing! STILL - it's great to go and do 'something'. The gym girls have been fantastic as they let me come when they are closed so there are no other people there. I love going but am totally embarrassed by my limitations. Let's hope I can report major improvements in that area in the coming months! There is a "GTS" machine that I'd love to use but it's upstairs and I don't think I could even get up there at the moment...well, I could but it would be ugly! :)
Symptom wise, I feel much the same as I did before I left. Thankfully I no longer feel weaker than before I left but I certainly haven't noticed any obvious improvement either. Of course, I have to keep reminding myself that the 'promise' of HSCT is to only HALT the disease and the 'win' is that I no longer have MS in my body - how freaking awesome is that! My Mum, Dad and Andy all say they think I'm walking better but I (hate to) disagree. It feels pretty much exactly the same...(early days Mary, early days)....
Because I have had MS for so long and the scar tissue/lesions on my myelin sheath/brain would be well and truly formed, in reality it is unlikely I will see big improvements but I pray, hope, pray that I will see enough improvement to get some decent quality of life back - for me that means walking to netball to watch Piper unaided, or walking on the beach for a kilometre or two (or three!), walking out through the surf without falling, buying shoes without stressing about heel height or whether they will fall off because they have no back and my feet can't hold them on (thongs!), wandering around the shops for more than 5 mins. I would LOVE to play netty again but I know that is stretching the dream a little far....but 2kms on the beach would be just wonderful! I already have a few ladies I'd like to tag along...with champagne in hand ! :) :)
Anyway - I am at home and mostly resting. As I think I've said before, I try to do a little job per day and the last couple of weeks have seen me clean out my pantry and fridge, some kitchen drawers, a few more of my daughter's toys, Christmas shopping 95% done etc. I am also doing some work from home which is a God send (speaking of which I need to login and do some more)!
So my report is this: I am fine mentally, happy, etc. I am a little (lot) bored with my own company and a little (lot) lonely. My hubby and daughter have been busy every weekend since I returned which would normally be fantastic but, when you're stuck at home, is so frustrating. They've been to the local show, Christmas parade, my niece's birthday, dance concert, park opening etc. BUT I know this is but a season and in 12 months time, hopefully I am a different person!
As mentioned, my old symptoms remain (so far) and I feel I am pretty much the same as when I left. BUT!! I remain incredibly THANKFUL that I have stopped this disease.
I am THANKFUL for your support and the incredible year I have had in preparing for my trip.
I am THANKFUL for my family and friends.
I am THANKFUL for my health (now that I no longer have MS).
I am THANKFUL for my hubby's patience.
I am THANKFUL that I am getting Netflix next week (thanks to bigger download limit) :)
I am THANKFUL for my renewed faith.
I am THANKFUL for my wonderful workplace and their support (and for giving me something to do to keep my brain ticking over).
So no matter what, I am thankful that I had this opportunity and continue to pray, pray, pray for some improvement....okay - better log in and do some 'real' work...although hang on...Ellen's nearly on! :)
Take care and hope your Christmas preparations are moving along nicely, you're gearing up for holidays/annual leave, the weather is good where you are and you're happy and healthy!
For now....Mary OUT!
I have been on 'house arrest' since I got home from Russia (I think Oscar Pistorius is doing it wrong!!) This basically means no visitors, no going out in public other than when necessary (eg Doctor visits) etc. When I originally came home, after being told my bloods were all normal, I had a few people over (my BFF, my sisters (who stood either outside or 5 metres away from me), Mum and Dad, a friend from work etc) but I was told by fellow HSCT patients who have gone before me - that it was FAR too early to be receiving visitors! Oops!
So now I have become quite anxious about going out and having people over, even though my Haematologist says it is fine as long as they are not sick. My bloods are in the normal range and have been since I returned...He also said I was fine to go out but to be sensible (eg no crowds) but I really am quite panicky about it all !
A fellow patient and friend (who arrived in Russia 2 weeks after me) has contracted whooping cough and she was following all the rules perfectly so that freaked me out too! (she's doing fine by the way)...
I have not kissed my daughter or hubby on the lips since returning but have to have cuddles with Piper (oh - and Andy) each night when we are reading or talking about the day etc. Hand hygiene is my big thing and poor Pipes can't cough without me hollering for her to get the Purell !!
This week, I have started doing PT with a friend here in my home town. I feel quite pathetic with what I can/can't do but I also know that we have to start somewhere. It's incredibly frustrating when (in my 'glory days') I was at the gym EVERY DAY doing 2 classes, treadmill, bike, rower...etc. I feel like I should be able to walk back in and at least do the basics but everything is so bloody hard and my weights are embarrassing! STILL - it's great to go and do 'something'. The gym girls have been fantastic as they let me come when they are closed so there are no other people there. I love going but am totally embarrassed by my limitations. Let's hope I can report major improvements in that area in the coming months! There is a "GTS" machine that I'd love to use but it's upstairs and I don't think I could even get up there at the moment...well, I could but it would be ugly! :)
Symptom wise, I feel much the same as I did before I left. Thankfully I no longer feel weaker than before I left but I certainly haven't noticed any obvious improvement either. Of course, I have to keep reminding myself that the 'promise' of HSCT is to only HALT the disease and the 'win' is that I no longer have MS in my body - how freaking awesome is that! My Mum, Dad and Andy all say they think I'm walking better but I (hate to) disagree. It feels pretty much exactly the same...(early days Mary, early days)....
Because I have had MS for so long and the scar tissue/lesions on my myelin sheath/brain would be well and truly formed, in reality it is unlikely I will see big improvements but I pray, hope, pray that I will see enough improvement to get some decent quality of life back - for me that means walking to netball to watch Piper unaided, or walking on the beach for a kilometre or two (or three!), walking out through the surf without falling, buying shoes without stressing about heel height or whether they will fall off because they have no back and my feet can't hold them on (thongs!), wandering around the shops for more than 5 mins. I would LOVE to play netty again but I know that is stretching the dream a little far....but 2kms on the beach would be just wonderful! I already have a few ladies I'd like to tag along...with champagne in hand ! :) :)
Anyway - I am at home and mostly resting. As I think I've said before, I try to do a little job per day and the last couple of weeks have seen me clean out my pantry and fridge, some kitchen drawers, a few more of my daughter's toys, Christmas shopping 95% done etc. I am also doing some work from home which is a God send (speaking of which I need to login and do some more)!
So my report is this: I am fine mentally, happy, etc. I am a little (lot) bored with my own company and a little (lot) lonely. My hubby and daughter have been busy every weekend since I returned which would normally be fantastic but, when you're stuck at home, is so frustrating. They've been to the local show, Christmas parade, my niece's birthday, dance concert, park opening etc. BUT I know this is but a season and in 12 months time, hopefully I am a different person!
As mentioned, my old symptoms remain (so far) and I feel I am pretty much the same as when I left. BUT!! I remain incredibly THANKFUL that I have stopped this disease.
I am THANKFUL for your support and the incredible year I have had in preparing for my trip.
I am THANKFUL for my family and friends.
I am THANKFUL for my health (now that I no longer have MS).
I am THANKFUL for my hubby's patience.
I am THANKFUL that I am getting Netflix next week (thanks to bigger download limit) :)
I am THANKFUL for my renewed faith.
I am THANKFUL for my wonderful workplace and their support (and for giving me something to do to keep my brain ticking over).
So no matter what, I am thankful that I had this opportunity and continue to pray, pray, pray for some improvement....okay - better log in and do some 'real' work...although hang on...Ellen's nearly on! :)
Take care and hope your Christmas preparations are moving along nicely, you're gearing up for holidays/annual leave, the weather is good where you are and you're happy and healthy!
For now....Mary OUT!
Wednesday, 21 October 2015
DAY +30 - HAPPY ANNIVERSARY TO ME!
Today marks my 1 month transplant 'anniversary' or "Day +30" since my new stem cells were returned to my body!
I thought I would document how I'm going ... mostly so that in 6 months time I can look back and see how far I've come!! :)
I have been back in Australia for 14 days. Wow! How quickly time flies!
I initially came back and in the first few days home I had cleaned out my bathroom cupboards and drawers of all my old make-up, creams etc; I'd cleaned out my daughters wardrobe and drawers of clothes that no longer fit; caught up on all my washing and ironing; tidied up the spare room; etc...
I was told by fellow HSCT'ers to SLOW DOWN and REST. Apparently doing WAYYYY to much! And just to prove a point - today has seen me spend the entire morning in bed...so tired!
I now concentrate on 1 job a day and try to rest as much as possible. I've set up camp for myself on the couch and worked on my 'couch-groove' (think Homer Simpson)...some days I feel really great, some days I am so so tired (like today). Sleep patterns are all over the shop too - I understand from the different medications still in my body which will slowly work themselves out.
I've been very spoilt with meals so far - with mum, my sisters and friends donating meals for us! Particularly handy when Andy went to Tough Mudder last weekend or on days like today when I'm just shattered.
I have not left home since I got here! I will go for an appointment with my GP tomorrow to get blood results (had bloods done at home earlier this week) and a catch up....but otherwise I've been in lockdown. Depending on what my GP says, I might take mum for a coffee somewhere quiet...wouldn't that be nice!!
If these bloods come back 'normal' I'm also going to ask if I can do the school run (not getting out of the car) or some other little job(s). I'm also keen to start physio but I expect that is some weeks away.
("REST Mary, REST")!
Through friends here (thanks Tars/Nikki), Dad has organised a stationery bike for home and so I'm keen to use that even for 5 mins each day. Hopefully this builds up some muscle and isn't too taxing on my body.
My symptoms at the moment aren't great. To me - my legs feel weaker than before I left but if I'm truly honest with myself and think about how they were when I left...they are probably much the same as just before Russia - otherwise only marginally worse. It's super frustrating but, reading a lot of other blogs and files on the HSCT forum, this is completely normal so I am trying to relax about it. REST is the best thing I can do for myself...
I can't really say if other minor symptoms have change or not....as nothing else other than my legs, was really that bad. Bladder urgency was a problem (sorry readers!) but because I'm just at home, I couldn't tell you if that's improved or not....
I do know I still can't handle the heat well as I was sitting out in the sun on Monday and by the time I came in, it was very, very hard to walk.
I have had a few visitors and will slowly accept more. Mum and Dad come by regularly, my sisters have been up, my in-laws and my darling best friend from here in the Mount. I've also seen a good friend from work and my neighbour popped over for a chat on the grass last weekend. I haven't worn a mask yet for visitors but Piper has a bad cough so am wearing around her at the moment :(
My haematologist said it is more important to have good hand cleanliness, hygiene (and don't hug/kiss everyone) so I'm concentrating on that...
So that's month 1 done and done. Nothing ground-breaking to report and just recovery and REST. BUT super-optimistic for the next few months.
I thought I would document how I'm going ... mostly so that in 6 months time I can look back and see how far I've come!! :)
I have been back in Australia for 14 days. Wow! How quickly time flies!
I initially came back and in the first few days home I had cleaned out my bathroom cupboards and drawers of all my old make-up, creams etc; I'd cleaned out my daughters wardrobe and drawers of clothes that no longer fit; caught up on all my washing and ironing; tidied up the spare room; etc...
I was told by fellow HSCT'ers to SLOW DOWN and REST. Apparently doing WAYYYY to much! And just to prove a point - today has seen me spend the entire morning in bed...so tired!
I now concentrate on 1 job a day and try to rest as much as possible. I've set up camp for myself on the couch and worked on my 'couch-groove' (think Homer Simpson)...some days I feel really great, some days I am so so tired (like today). Sleep patterns are all over the shop too - I understand from the different medications still in my body which will slowly work themselves out.
I've been very spoilt with meals so far - with mum, my sisters and friends donating meals for us! Particularly handy when Andy went to Tough Mudder last weekend or on days like today when I'm just shattered.
I have not left home since I got here! I will go for an appointment with my GP tomorrow to get blood results (had bloods done at home earlier this week) and a catch up....but otherwise I've been in lockdown. Depending on what my GP says, I might take mum for a coffee somewhere quiet...wouldn't that be nice!!
If these bloods come back 'normal' I'm also going to ask if I can do the school run (not getting out of the car) or some other little job(s). I'm also keen to start physio but I expect that is some weeks away.
("REST Mary, REST")!
Through friends here (thanks Tars/Nikki), Dad has organised a stationery bike for home and so I'm keen to use that even for 5 mins each day. Hopefully this builds up some muscle and isn't too taxing on my body.
My symptoms at the moment aren't great. To me - my legs feel weaker than before I left but if I'm truly honest with myself and think about how they were when I left...they are probably much the same as just before Russia - otherwise only marginally worse. It's super frustrating but, reading a lot of other blogs and files on the HSCT forum, this is completely normal so I am trying to relax about it. REST is the best thing I can do for myself...
I can't really say if other minor symptoms have change or not....as nothing else other than my legs, was really that bad. Bladder urgency was a problem (sorry readers!) but because I'm just at home, I couldn't tell you if that's improved or not....
I do know I still can't handle the heat well as I was sitting out in the sun on Monday and by the time I came in, it was very, very hard to walk.
I have had a few visitors and will slowly accept more. Mum and Dad come by regularly, my sisters have been up, my in-laws and my darling best friend from here in the Mount. I've also seen a good friend from work and my neighbour popped over for a chat on the grass last weekend. I haven't worn a mask yet for visitors but Piper has a bad cough so am wearing around her at the moment :(
My haematologist said it is more important to have good hand cleanliness, hygiene (and don't hug/kiss everyone) so I'm concentrating on that...
So that's month 1 done and done. Nothing ground-breaking to report and just recovery and REST. BUT super-optimistic for the next few months.
Saturday, 10 October 2015
G'DAY MATE
After a late night (remember - I'd slept 8 hours on the plane)....we woke to a beautiful day in Glenelg. Dad and Andy went on a coffee run and we all just chilled.
My Haematologist appointment wasn't until 2pm so we did a run to Harbour Town (Me, Mum and Dad sat in the car while ANDY and Piper went for a shop looking for new runners), then we went to the Tennyson Centre.
My Haematologist had come in especially to see me (legend) and has worked out a plan so I don't have to travel to Adelaide every 2 weeks. Between he and my awesome local GP, we can do bloods every 2 weeks and they will work together re results.
Confirming all that Dr F had told me, he was very thorough and suggested I lay low for a little while but to not get crazy about it, Steer clear of sick people, crowds etc but relax at home and in a couple of weeks, start to do a job each day (out of the house)...avoiding crowds, etc.
I can do school drop off soon (staying in the car) but that's exciting (don't judge) !!
He confirmed my fears about all you Thailand, Bali, etc travellers but said that they could either go get checked out if they really wanted to but otherwise just wait a few weeks to see them.....so that's fine too as mentioned above, I'll be hibernating for a bit.
My legs (even as I type this today) are sooooo weak (again - think 10 times worse than before I left) so I am happy to be hanging around home for a couple of weeks in the hope that I can get some strength back before anyone sees me...cos I think you'll be shocked. I'm going to do 'little exercises' just to wake up my muscles if nothing else.
Mum and Dad think I'm walking better in that I'm not dropping my foot but I know within myself that I am SOOO weak (frustrating much)...but both Dr F and my Haem said this is because of chemo / blood levels / living in a 3m x 2m box for 30 days and NOT MS (which makes sense because of course I DON'T HAVE MS)!! But I did see other patients walking out so much better so it IS frustrating.
My bloods are great/normal; I have a few medications to take; a LOT to learn about food; take my temp each day; LISTEN TO MY BODY (so hard); and I'm DOING IT!! RECOVERY is absolutely as important as the procedure so I need to do it right!
After doing some bloods, we drove home around 4pm Friday. Isn't it crazy when you go away and then suddenly it's like you NEVER left! We stopped at Tailem Bend (SO normal); the scenery was SO FAMILIAR...how can I have seriously just been away for 5 weeks and CHANGED MY LIFE SO COMPLETELY?!
Andy pulled over just near the airport. I was thinking we were avoiding a Roo on the road....and then I saw the beautiful sign that Dad had made (and thanks to Milla also). So MORE tears (and again now).
So....I'm sorry...but MY DAD beats your DAD.
Said sign is now in my backyard. So special.
And that it. I'm home!!!!
As promised, my little sis brought food yesterday but then (virtually) ran away...I'll hug her eventually!! :) She'll pick up Piper tomorrow (tooting from the safety of the car)!! :)
My big sis has been sick as has my niece so I'll see them in a few weeks...it's great how people 'get it'...very comforting.
Poor Andy sneezed this morning and Piper had him masked up and "Aquimed" before he knew what was happening! My poor dog Basil just looks at me through the glass door in total bafflement.....and the cat...well she's a cat - she just doesn't give two hoots.
Andy's gone to watch Bathurst with his Dad and Piper is playing with her cousin. I will clean up the lunch mess and probably rest after that (again - SO frustrating).
School is back tomorrow so I'll make sure Piper's bag doesn't have 2 week old food in it (my bet is it does).
I didn't think I'd be good at the "REST" thing....but I think I'll be fine. These legs will ONLY do so much before they dummy-spit it at me. But it's all good. I'm so happy. I don't have MS. These legs will sort themselves out....I feel well...I had an amazing experience (and I mean the entire year)...I am so grateful to everyone....
I just now have to do THIS BIT (recovery) well as this is as important as everything else. So I have my game face on and will do whatever I'm told to do or told not to do.
I'll continue to blog if something of interest happens or if you have questions but I doubt it'll be daily..."Got up; had breakie; got Piper ready for school; meditated; did exercise; slept; had lunch/watched Ellen; cleaned up after lunch; slept; put stuff in slow cooker; slept; etc"... could get real tired real quick!
If you have questions - inbox me on Facebook and I will do my best to answer anything!
Thanks for reading so far. My photo's have been RAW (and if you know me - you'll know that's been REALLY hard for me) but I wanted to be as honest as I could.
My Haematologist appointment wasn't until 2pm so we did a run to Harbour Town (Me, Mum and Dad sat in the car while ANDY and Piper went for a shop looking for new runners), then we went to the Tennyson Centre.
My Haematologist had come in especially to see me (legend) and has worked out a plan so I don't have to travel to Adelaide every 2 weeks. Between he and my awesome local GP, we can do bloods every 2 weeks and they will work together re results.
Confirming all that Dr F had told me, he was very thorough and suggested I lay low for a little while but to not get crazy about it, Steer clear of sick people, crowds etc but relax at home and in a couple of weeks, start to do a job each day (out of the house)...avoiding crowds, etc.
I can do school drop off soon (staying in the car) but that's exciting (don't judge) !!
He confirmed my fears about all you Thailand, Bali, etc travellers but said that they could either go get checked out if they really wanted to but otherwise just wait a few weeks to see them.....so that's fine too as mentioned above, I'll be hibernating for a bit.
My legs (even as I type this today) are sooooo weak (again - think 10 times worse than before I left) so I am happy to be hanging around home for a couple of weeks in the hope that I can get some strength back before anyone sees me...cos I think you'll be shocked. I'm going to do 'little exercises' just to wake up my muscles if nothing else.
Mum and Dad think I'm walking better in that I'm not dropping my foot but I know within myself that I am SOOO weak (frustrating much)...but both Dr F and my Haem said this is because of chemo / blood levels / living in a 3m x 2m box for 30 days and NOT MS (which makes sense because of course I DON'T HAVE MS)!! But I did see other patients walking out so much better so it IS frustrating.
My bloods are great/normal; I have a few medications to take; a LOT to learn about food; take my temp each day; LISTEN TO MY BODY (so hard); and I'm DOING IT!! RECOVERY is absolutely as important as the procedure so I need to do it right!
After doing some bloods, we drove home around 4pm Friday. Isn't it crazy when you go away and then suddenly it's like you NEVER left! We stopped at Tailem Bend (SO normal); the scenery was SO FAMILIAR...how can I have seriously just been away for 5 weeks and CHANGED MY LIFE SO COMPLETELY?!
Andy pulled over just near the airport. I was thinking we were avoiding a Roo on the road....and then I saw the beautiful sign that Dad had made (and thanks to Milla also). So MORE tears (and again now).
So....I'm sorry...but MY DAD beats your DAD.
Said sign is now in my backyard. So special.
And that it. I'm home!!!!
As promised, my little sis brought food yesterday but then (virtually) ran away...I'll hug her eventually!! :) She'll pick up Piper tomorrow (tooting from the safety of the car)!! :)
My big sis has been sick as has my niece so I'll see them in a few weeks...it's great how people 'get it'...very comforting.
Poor Andy sneezed this morning and Piper had him masked up and "Aquimed" before he knew what was happening! My poor dog Basil just looks at me through the glass door in total bafflement.....and the cat...well she's a cat - she just doesn't give two hoots.
Andy's gone to watch Bathurst with his Dad and Piper is playing with her cousin. I will clean up the lunch mess and probably rest after that (again - SO frustrating).
School is back tomorrow so I'll make sure Piper's bag doesn't have 2 week old food in it (my bet is it does).
I didn't think I'd be good at the "REST" thing....but I think I'll be fine. These legs will ONLY do so much before they dummy-spit it at me. But it's all good. I'm so happy. I don't have MS. These legs will sort themselves out....I feel well...I had an amazing experience (and I mean the entire year)...I am so grateful to everyone....
I just now have to do THIS BIT (recovery) well as this is as important as everything else. So I have my game face on and will do whatever I'm told to do or told not to do.
I'll continue to blog if something of interest happens or if you have questions but I doubt it'll be daily..."Got up; had breakie; got Piper ready for school; meditated; did exercise; slept; had lunch/watched Ellen; cleaned up after lunch; slept; put stuff in slow cooker; slept; etc"... could get real tired real quick!
If you have questions - inbox me on Facebook and I will do my best to answer anything!
Thanks for reading so far. My photo's have been RAW (and if you know me - you'll know that's been REALLY hard for me) but I wanted to be as honest as I could.
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