Riding every single day on my bike…

Hi everyone

As some of you may know I spent all of December in hospital here in nz…(after a “little” umm misshap on my bike and a helicopter flight from a remote Mt bike trail) And went from a part time wheelchair user to full time wheelchair user… As well as dealing with a number of other health issues… (short answer I have this poorly understood thing called fmd (function neurological disorder) where parts of my brain are not talking to other parts of my brain properly .. So all sorts of odd medca issues and it has a lot of over lap with my other disabilitys inc my dyspraxia (so I can ride a bike but can’t walk anymore) and no feed back /touch feeling over much of my body /no body awaness.. In my case there is no fix or cure (and from what I can tell it will get worse over time with me)

I have been staying at my mums place (since I’m normally full time on the road by bike (and wheelchair) around nz) since I got out of hospital…

I have really been missing the outdoors and being active … I have been slowly building up my time on the bike again… And for a number of reasons I have decided to do a challenge to ride my bike every single day for as long as can (my first aim is for at least a month) I kinda have dr orders to ride my bike as much as possible for heath reasons (including blood flow and muscle heath) swimming is out because of stupid rules at the local swimming pool so for me biking is about the only exercise my legs now…

I’m using strava to track my bike rides (just under damiana day on strava) I think it also updateds to komoot as well (still leaning to use komoot) though my garmin bike computer

So if anyone would like to see what I’m up to they can on there (or on my other Facebook page (life on the road by bike and wheelchair) or @gypsyonabike1 on instergram

I’m riding my mums mt bike (since my own bike Friday needs new wheels) at the moment

I’m doing this for a few different reasons inc showing other people what is possible (it’s also part of my riding every road in nz adventure /challenge.. And there’s 94,000 km of roads in nz)

Hospital life…

Hi everyone.. Well I can give a bit of a update with hospital suff…

Where to start.. At the moment I have no idea how long I will be here in the hospital… It might be another week or longer.. All I have been told is I need to be independent before I can leave.. What ever that means… In short standing and walking (well I guess semi walking in may case)… Im now in the rehab ward (well one of them) and have done some physio.. Lots of falls when standing and on my knees still cant walk a single step yet… As for why.. I’m not exacty sure and nore are the drs

In sort blame my weird unknown medical conditions suff… Ie it’s being exta weird at the moment…

Now as far as injuries I still have sore /injuri shoulders, back, hips and a few other places.. Ie lots of pain and not much sleep… Ie when I move a lot of the time some thing normaly don’t like it and let’s me know.. As for pain relief… It’s been a challenge as a lot of the things they tried had nasty side effects (at times worse than the first issue (ie pain) or they don’t work at all… So not fun..silly unknown medical conditions suff…

Yesterday was a rough day (one of many in the last 2 weeks…

I have been on the exercycle for 10 mins yesterday and 15 minutes today… So no issues with riding at least 🙂 (well besides getting on and of it (the no walking issues )…  (and no pain on the bike (go figure)

A friend sent me a care box that I have been enjoying inc some clothing (since most of what I had with me got cut off me (blame the mri scanner /back /neck issues for that one…) and a soft toy unicorn : )

As far as my bike and gear.. It’s now at my mums place in te kuiti… (I will explain that story and do some more thank yous in a future post)

As for the future.. It’s a bit unknown but at the moment I’m likey to spend at least a few months at my mums place… Once I get out of the hospital…

As far as bike riding /bike touring… It’s a wait and see… So my ta/sounds to sounds bikepacking trip is on hold until at least September next year (because of timing of a few things on my route for that) I will likely need a few months or more to rebuild my bike fitness anyway and there’s a lot of unknowns around my unknown medical conditions suff what I can do in the future… At this point in time walking is a no go.. With time I may be able to do some “walking” but it’s unknown what that may be like…

As for the timber trail it’s still on my to ride list.. Just not sure when (and what kind /type of help I will need for it) it will happen…

So a lot of time/things to poinder what the future may be like… As I lay here in my hospital bed…

Lastly a big thank you for the kind support from everyone : )

Playing waiting games…

Playing waiting games.. To see how my body recovers… And to plan what’s next..

At the moment it’s the hips, back, and shoulders and the pain /discomfort what’s the main issues… Also my legs are umm not really weight bearing at the moment.. Though that’s less of a issue… (that might give some idea of how crazy the health issues /disabilitys I deal with on a daily basis are that having legs that are not weight bearing at the moment is not really a worry at the moment ) I’m fairly sure I can figure out the leg issues in time…

As for what’s next.. Well that’s a bit up in the air at the moment… I guess I should find out on Monday what the plan is…apparently the physios are meant to be seeing me umm some time… No idea what going on with rehab (or if it’s even happening) so I could be here for a few more days before getting discharge .. Or it could be longer…

So I’m just taking each day as it comes…

As for the riding part of my life… Yes I am planning on riding the rest of the timber trail…. Yes i hope to get back to riding around nz… When exactly that will be is a bit unknown.. (hopefully soon)

Type 3 fun…

Hi all.. For anyone who is following my adventures… I had a Type 3 of fun day today.. Now at Waikato hospital after fall from bike… I will update when I know more… (have a neck brice on and just had a ct scan,x rays and a few other things – neck, shoulder and back, hip injurys… waiting to hear what’s next…)

Hi everyone.. Well the scans and tests mostly came back fine… I guess I find out next week exactly what the mostly fine really means… Might have some physio /rehab to do.. But likely won’t find out the exact plan until next week… Still very sore/pain /discomfort especially hips and shoulders.. And having new leg issues (yep probably have to lean how to walk again… (um again) anyway… Phones about to go flat…

Te kuiti to otorohanga

Te kuiti to otorohanga (around 20 km)

Doing the last of the packing and the last min jobs before saying goodbye to my mum.

Heading down the drive way I have 2 choices of roads I can take for todays ride…

I can take back roads or I can take the main road…

The back road has less traffic but has more rolling hills (what I tend to struggle with)… The main road is more busy but only has one main hill… It also has a cafe about 1/2 way.. (in fact about 1/2 way up the only hill…)

After much though I take the main road… This is partly incase I run into a issue… There’s a lot of unknowns with this ride and taking the main road means it would be easier for me to get help if I need it…

Some times this road can be very busy (especially if sh1 gets closed for some reason or just holiday traffic) today the traffic is fine and mostly well behaved….

With passing traffic given me lots of room as they drive pass (having the colourful flags on the bike and trailer helps /makes a big difference)

Near the turn off to waitomo caves (around the 10 km mark) I stop to take off my leg warmers now that the day has warmed up and have some food… A few km down the road is the big apple (homestead?) where there is a big apple on side of the road and a cafe /furt and veg shop where since it’s a hot day I stop for a ice-cream…

At the top of the hill is a road side rest area that from memory has a geocach there (geocaching) sure enough after a quick look at my phone I soon find it before getting back on the bike and enjoying the down hill ride…

Getting into the town of otorohanga there’s two river bridges that have little to no shoulder so waiting for a big gap in the traffic I take the lane as I cross over the bridges…

A stop at the supermarket before heading to the camping ground to set up camp for the night

Today was a fairy easy day to get back into the reteant of daily bike travel and to test out /fine tune some things before the harder days that are coming by bike and wheelchair around nz : )

Day 1 on the twin coast cycle trail

Hi everyone for anyone who is following my adventures around nz here’s the notes from a day on the road /trail…

Tails from the road /trail…

Paihia camp ground to some where

Packing up camp I get on the road a little later than planned…

Riding the gravel road back out to the main road i pass a few shops before starting the first climb of the day… The road winds its way up the climb.. Part of the way i stop for a rest… Not much power in the legs today.. And get chatting with another bike rider about the cycle trail including what parts are open and closed (where they Rebuilding the old railway).

A few more rest stops later i get to the top of the climb… From here i have a choice of ways i can go… I can head down to the start of the cycle trail and ride a small part of it before getting on the road again to avoid the closed part of the cycle trail.. I could take the official detour along a gravel road with about 350 m of climbing…though the bush.. With that road in a unknowns state with the recent storms..

Or i can stay on the main road until i get to the open part of the cycle trail.. With only one climb of around 140 m… The main road is more busy and not very wide… So not recommended to ride on for most people.. For this girl it’s fine as i have been on much worse roads and most of the time traffic is well behaved around me.. So after some thought i stay on the main road enjoying the down hill ride back down to sea level before riding the semi flat road to the next hill… It’s slow going up this hill with a few rest stops along the way… Then a fast descend back down to sea level again…

A bit more riding brings me to the start of the open part of the cycle trail.. I skip the first little bit of the trail to avoid a pisky post type of anti motorbike barrier… One where i would have to take some of the bags off the bike… Take the wheel chair off the bike trailer and unhook the bike trailer… And take everything past the post… Before putting everything back together again.. What takes a lot out of me (and the post type anti motorbike barriers don’t do anything anyway since one can get a motor bike though it… Stupid people who don’t think things though…)

Heading down the driveway of the rugby grounds i get on to the trail by a set of squeeze type of motorcycle barrier… This type is less of a pain then the other kind as i dont tend to have to take any thing off the bike… Though they are still a pain to deal with… Especially with just how many there is on the trail (around 50 +)

Its about 4? Km of trail until the next town… One that has a railway down the middle of the road in the town (yep give way to trains)… The trail is a mix of gravel and concrete as it runs next to the old (in use) railway line… Getting to the town the signs are a bit confusing as i head off trail into the town of kawakawa just as a train is heading down the main street of the town…

Going into a bakery for some late lunch i get some food before heading just down the road to the famous hundertwasser public toilets… Where a number of people take pictures of my bike (with the odd person taking a photo of me on the bike.. Including some people who have bike Fridays)… I end up chatting with a number of people about what im doing and why (including doing some taking about mental health suff) then a short ride to the train station for a look around just as the train is coming back in so i have a quick chat with the people about the train and how wheelchair accessible it is… (yes it’s partly wheelchair accessible though best to give them a call beforehand so they have the right people ready to help and answer any questions about wheelchair accessible (yep that’s what they said when asked them )….

Then its off to the supermarket (where people seem to like it to park in the no parking area a lot…) and there’s no cube cut to get on /off the footpath… Sigh.. Wheel chair accessible can be a challenge in small towns (well even bigger towns /city’s as well) in nz.. After getting some food for the next few days on the trail i get back on the trail where i left it..

Only to find the trail loops around to the back of town anyway.. In one place the trail is washed out by one of the anti motorbike barriers and i need some help getting the bike a trailer though (needed to lift the bike trailer up about 20 cm or so at the same time as push the bike though… A passing walker helps me with this (with me lifting the bike trailer as they push the bike through..)

After being very confusin with the trail signs at the back of the town i ended up asking some people outside a workshop how to find the trail west out of town…

Riding past the railway station yard as i head out of town.. Soon the trail is following the route of the old (closed and ripped up) railway line across a bridge and though farmland (with lots of those pisky anti motorbike barriers to deal with) until i get to the next village/town (and big meat works /wood mill) the trail runs behind the town with a sign to turn off to the local shop.. Following the trail after a while it turns off the old railway line and runs next to the road for a while before heading onto farmland and then bush back on the route of the old railway line though some cutting to a set of two big old wooden railway bridge (with the trail on big swing Bridges over the old railway bridges… Not sure why they didn’t use the old bridges… Maybe to keep them as much as possible how they was or a safety thing?

By now its getting near dark so after having a good look at the bridges i find a nice wild camping spot nearby to set up camp for the night…

A life with out pain/discomfort…

Hi everyone…

Well the last 2 days have been the first time in the last 4-6 years that I have not been is some kind of pain /discomfort with my hips/ legs at least part of each day .. I seem to have worked out what the triggers are for the pain /discomfort/other issues and what helps…. I been trying different things over the last few weeks and keeping track of what happens….and doing some fine turning of different things… (what for different reasons I was not able to do on the road)

In short walking on my feet is super bad for me as well as standing as it puts pressure on neves /causes soft tissue damage/other issues .. Any thing more than about a km (what over 24 hours is not very far) and the pain /discomfort /really kick in… If I stop walking/standing as soon as the pain starts it the pain soon goes away… (so walk a bit then sit for a while before the next bit of walking )

Walking when my legs are uncoordinated (what they are a lot of the time) tends to cause the most issues… (what does make sense when one thinks about the biomechanics of walking… What means I have a very small window of time on my feet (in short just enough for weight bearing Suff for bones/health ) walking when tired is really bad for me as well …

Cycling on the other hand is great for my legs and any pain soon goes away… Yep it’s biomechanics again (how my legs spin (including being none wight bearing (unlike standing, walking) it also gives a bit of a buffer for time on my feet… Ie the more time on the bike the more time on my feet (up to about 2 km max-still figuring that part out ) having uncoordinated legs are not ready a issue on the bike as I know how to deal with it when it happens… (and cycling is so much easier as far as dealing with uncoordinated legs… (still working on my handler bar set up with the issues with my hands thought)

long distance riding is fine once I’m fit enough to do it again… (it won’t cause any problems /issues) So that’s good news

My legs still love to ramdomy stop working for anything from mins to hours at a time but I have been dealing with that issue for 18+ years so no big deal most of the time…

So I have a much better idea what is going on and why I was having so many issues.  Including when bike touring…

So onto real world Suff…

1. I need to spend a lot more time on the bike… As its about the only exercise my legs do… And helps my legs (both with pain /other issues) (swimming did cause a few issues so not a good idea to swim with my legs much..(im fine just swimming with my arms.. )

2. I need to remember to really cut down on walking on my feet (ie limit walking around the house only  (because of wheelchair accessible issues – need to build some ramps to go from sleep out to house).. The rest of the time in the wheelchair /on the bike…

3. I have no idea when I will be back on the road by bike around nz full time touring again… It depends on a number of things /issues to solve…

4. It’s frustrating not being able to walk as such.. There is so many places I would love to explore by foot around nz (where I can’t go on my bike/in the wheelchair) but simply can’t or really bad Suff will happen.. (ie  would need I lift out/time in hospital… Yes that bad)-(if I push on with walking my legs fold up under me/legs stop working for many hours /very stupid amounts of pain and a few other issues ) but it is what it is… Life rolls on

There is still so many places that I can explore by bike and wheelchair around nz… Some I will need a bit of help with…

But I will be out there exploring /leaning about different places… : )

See you some where in nz by bike and wheelchair around nz

A update…

Hi everyone.. It’s been a while since I last posted here… A few weeks ago I bent the derailleur hanger /drop out on my bike frame… So for a few different reasons I’m staying at my mums place in te kuiti until at least November…

I am planning on typing up my notes from the start of my tour aotearoa journey to now over that time and posting it on here… 🙂

At the moment I’m doing day rides on the bike.. I don’t have any way to attach my bike trailer to my bike as I swapped out the rear frame of my bike so I have a working bike now but since part of the trailer Mount is welded on to the frame… (from when it was redone in Christchurch a few years ago) I don’t have a way to attach the bike trailer at this point in time….

Update on not walking any more

A post for my blog…

Hi everyone i started this blog about the same time as I lost my ability to walk… About 4 years ago..   

Some know the story of the why /how I lost my ability to walk… For those who don’t…

Well I was born with a number of different disabilitys including dyspraxia so at times I was fairly uncoordinated.. Also for about 18 years or so a few times a month for a few hours at a time my legs would ramdony stop working… Despite lots of time getting different Dr’s looking at it they never be able to figure out why it happens…

Also I have a lot of tbi (head injurys) over the years…

At times my legs would be a lot more uncoordinated then usual…

Then around 4 years ago I was visiting my mum in hospital and my legs stopped working what was inconvenience for the first few hours… But in a new twist… My legs didn’t come back after a few hours… So I ended up in hospital… A week later my legs umm kinda came back… But I could not walk at all anymore… Also some where along the way I umm lost touch feeling over most of my body /lost what little body awaness I did have… And a was a lot more uncoordinated then I used to be (+lots of other issues)

A number of tests later as still no real answers…

5 weeks in the hospital and still no walking.. After discharge from hospital (having to buy my own wheelchair – since the Dr’s didn’t know what was wrong with me I got no support)

I spend time at a friend’s place and kinda figured a way to “walk” it was very hit and miss and caused a lot of pain (and as I later found out damage/injuries to my body)
Most of the time I used the wheel chair to get around…

And that brings it to now… At times my “walking” got better for a bit before doing a crash and burn /time on bed rest… Hindsight being 20/20 I way over did “walking” and did a lot of damage /injuries to my self..

Looking back part of this was the crazy pressure that was put on me to walk and people’s idea /believe that using a wheelchair to get around was “giving in” /”giving up”… (especially from Dr’s) and anything short of walking again was not good enough…

(ugg stupid able body world suff)

Also wheelchair accessible just sucks in many places…..

I’m way over being in pain /discomfort /dealing with the falls and other issues when trying to” walk “

For me it’s not working… It’s not worth the issues /risks…

No matter how much I work at it its never going to get better…. In fact it would make things worse over time…

So I’m laying in my tent in a fair amount of pain (as I did a very small amount of “walking” to get into 2 shops yesterday…. (because of how incoven unloading my wheelchair on and off the bike can be) hindsight being what it is I should of used the wheel chair for that…. And so will be doing so in future no matter how inconven it is for both myself and others as its safer /causes less pain and other issues…. Cue wheelchair accessible issues… Sigh…

In short “walking” is not umm function for me as such any more besides the few steps that I do to get on or off the bike/some times set up the tent) … Some times a bit more time on my feet (like a bit of hike a bike) thought that comes at a cost to me in pain/discomfort /other issues so it will be fairy rare…..

Life is what it is…..

Have wheels (bike and wheelchair) will explore…..

Suff I have with me (gear with my disabilitys on my adventures)

Hi everyone

I’m offen asked what gear i have with me… Especially around wheelchair life suff….

Well I won’t do a full gear list… Here is Some of the things I have with me with my disabilitys…

A Macpac travel mug.. This is just one of those metal insulated travel mugs with a screw on lid… And no handle… I have this so I can have hot drinks both in the wheel chair and around camp.. In the wheel chair it sits between my legs so I have both hands to push (as holding a cup in one hand and pushing the wheel chair with the other hand.. Well I just go round in circles doing that : ) it’s also safer for me to use then most cups…

A Macpac Olympus tent… I have this tent for a few reasons… Including it’s a 4 season tent… It’s extremely easy to put up even when sitting on the ground/in the wheel chair .. It has two big doors (with the main door being big enough to roll the wheel chair right up to it) and it’s a lot easier for me to get in and out… It’s a very comfortable tent (especially in bad weather) with lots of room..

My wheelchair.. It’s a folding frame Melrose condor? Wheelchair.. That I got 2th hand..when folded It fits nicely on my bike trailer and gets tied down with 3 tie down straps with the back wheels on top tied on with 2 ski straps with the leg rests in the bike trailer (since they come off the wheelchair) along with the big wheelchair cushion that sits in my bike trailer when on the move)

Its OK though it needs some more work done on it (new part (twin to the part that broke in the forest ) and the bearings replaced in a number of places….no idea where/when I will get that done…

My trangia stove….. It’s a very safe and stable stove and easy for me to use… (and super relabel)

My kitchen sink… Aka my 20 L folding water bucket (normaly used for horse trekking) gets used for alsorts of thing and sits nicey on my back of my wheelchair…

2m long usb cables as it can be difficult to get close enough in the wheel chair to power points with shorter cables…

A big sleeping mat so I don’t have to worry about injurys with being in the same place too long..(skin break down issue suff ) Not that I can really feel the ground when laying on it….. So more to avoid issue then confon per say…

Polar fleece blankets…. Just the super cheap polar fleece throws from the wherehouse… I have a older horse picture one and a new black one…(since winter is coming (not that I had much of a summer this year) There’s have many uses including around my legs when in the wheel chair or a exta layer in my sleeping bag or just over my shoulders… I have a few issues with temperature control /knowing how hot or cold it is /issues staying warm at times….so they help with that…

A osprey day pack (daylite plus) for on the back of my wheelchair to carry stuff (it just nicey sits on the push handers of the back of my wheelchair with a strap around the wheel chair for shopping or “walks” in my wheelchair… (around town or a place /bush walks)

A tablet (in a strong case) what has a number of apps on it includes mapping apps /videos/notes and suff with wheelchair life (including wheelchair accessible apps) – most of the same apps on my phone… The tablet is easyer for me to use a lot of the time…

A inreach satellite messenger /tracker… This is for safety and stay in touch with people out of cell phone reception…. Since my wheelchair is my legs off the bike it’s super handy to have a way to get help if/when needed (a broken wheelchair in the middle of the forest case in point… ) (also so people can see where I am)

Headlight…. I need a good hands free light in the wheel chair since I get around using my hands to push the wheel chair around… Also super handy in camp… A Black diamond 400 with white and color lights….

What else?