Monday, 7 November 2016

Last week was a bad week

Last week was a bad week...

My get up and go had got up and went somewhere else sometime on Sunday night while I was sleeping...

I went to the gym on Monday morning...
Now it's quite normal for me to get on the bike and have it take a minute or two for the nerve connection to start working fast enough for my legs to start turning and exercise to begin happening... 
But this time it didn't happen like it normally does...
When I was sitting on the bike and my body wasn't even functioning enough to get any resistance happening it was really upsetting...
I kept waiting for everything to kick in and start working but it didn't happen...

Now, I don't know if you're aware, but Charcot Marie Tooth (CMT) is a degenerative, progressive disease.
It can stay the same for a long period of time with no obvious and notable changes at all, but it's always slowly progressing away in the background, the body adjusts and keeps adjusting with other nerves, tendons and muscles stepping up to do the job until one day it's just to much and there is an obvious and notable, to me anyway, progression.

After several days of functioning at a very reduced rate and being so exhausted both in body and mind, even when doing nothing, I was starting to think that this was going to be my new level of existing and I wasn't ready to cope with such a quick and dramatic reduction in my capabilities...

I was so very upset and to be honest was beginning to panic that I would hardly be able to keep up with doing things around here.
For those of you who don't know, my husband works very long days, often doing 100 hours of work a week, so I need to be okay to do everything myself, and to be honest I don't always do a very good job of a lot of things already, so I need all the energy and function to be working properly.

Gym is all I have left that I can do half decently...
I like pushing myself to the edge of my capability, it wouldn't seem like that to anyone watching, but you need to remember just walking into the gym is pushing through pain every single time (I have a deal with Daniel that I wont take any pain relief before working out as I need everything functioning at it's normal level so I'm fully aware of what my body is feeling and doing at all times and that means there is less chance of doing myself an injury)
Often it's the more simple and easier exercises, the ones set by the physiotherapist, that cause the most sweat, which is how my body also expresses pain.
I was terrified that I wasn't going to be able to get back into the gym again.

It took until Sunday to start feeling like a functioning human again...
There is a change in some levels of function that I am aware of, and there has been some adaption that is still happening as it can take me a few weeks to learn my new levels of pain and function.

But today, I was back at the gym again, I wasn't able to do my full routine, but I did 75% of it and I was happy with that and felt good about myself.

Saturday, 24 September 2016

Back at the gym

It's so good to be back in the gym after having several weeks of enforced rest after I had another cortisone injection in my shoulder (so desperate to get more movement) and the first one in my right hip (anything to stop the horrible pain that is going on 24/7 on top of my normal pain)

I'm not sure I would ever have two cortisone injections done at the same time again. I don't know if it's this way for everyone or maybe it's just the way my CMT body reacts to having cortisone. This time it knocked me around for a week instead of the three days that having one has normally done.

But who cares, it's fabulous to be able to walk without constant excruciating pain in my hip with every movement, to be able to lay in bed and not be thinking up ways to cut my leg off and still get around.
I'm back to my normal manageable level of pain and I really hope it stays that way and everything continues to improve.

The one thing that has been annoying is the way my muscles now cramp all the time, well it's not really cramp, one of the lovely things CMT can do to the muscles as things stop working properly is give you delightful spasms that are similar to cramps where the muscles and sometimes the actual joints themselves lock into a position.

So the roller has become my new friend,
well to be honest, friend isn't the correct word, I'm not sure what the correct word is, when I think of it I'll let you know but it's probably in line with a few of those other four letter words.

For me it is the best thing for working on the muscles, it is so painful but it hurts less than having someone do deep tissue massage on the legs, especially as that has been known to make me cry and swear.
And even more important I don't need to rely on someone else to do this for me in the middle of the night, I can just go into the lounge room and let it begin to work it's magic.

So the roller has now become part of my daily routine, just the same as stretching and my shoulder exercises. If I keep doing it everyday, even if it's not a day with hassles, it seems to help the muscles do the right things on other days.

Monday, 1 August 2016

My Cardio's the go...cardio is very important to me,
it's the only thing that's going to help me lose weight (remember I'm the person on these lovely meds who can put on weight when suffering from a severe case of gastro for 5 days simply because I wasn't moving any further than between the couch and the bathroom)

Before I injured my shoulder I was enjoying a variation of things to get my cardio workout with my favourite being the boxing class at Gear Up Fitness (this even reduces the super fit to balls of sweat by the end) I loved using the rower as it is a good all over body work out and I was just starting to like the elliptical.

I am not allowed to use the treadmill because with the increasing numbness in my feet from the CMT causing more nerves to die off and not work as effectively, and especially with the foot drag and backward leg movement that often happens it is considered to dangerous.

So once I injured my shoulder all I am left with is "the bike"
the one piece of equipment in the gym I really hate.
I don't know why I hate it but I have to give myself a good talking to every time I get on the damn thing and it takes at least a minute to get my head in the right space to get peddling fast enough for it to be effective.

Does anyone else have pieces of equipment they really hate? Do you avoid it or do you force yourself to push through that and just get on with the exercise?

Tuesday, 12 July 2016

What exercises am I doing?

I hate looking at myself in the mirror, I don't take photo's of myself, I don't let people take photo's of me, I hate the way I look because I am fat and disgustingly frumpy.

This has taken a lot of talking and yelling at myself to get this video up on here, in fact to be honest I had to drag myself kicking and screaming to the laptop to make it happen as I've been avoiding the blog altogether rather than put my already uploaded video up on here.
I have found it even harder than when I put up the photos of myself standing in my underwear, which has really surprised me because I would have thought those photo's would have been the hardest thing to post but instead they seem to have been the easiest thing to do.

Now you do need to remember that my work out is set by my physio, Ben Williams at Northcare Physio and Daniel at Gear Up Fitness and it works around two things, my CMT and my shoulder damage. There are exercises that aren't included because I can't do them or I'm not allowed to do them and the cardio side is very limited because all I am allowed to do is ride a stationary bike and I am finding that very frustrating.

So keep that in mind as I show you the various exercises that I do, there are exercises that should be included in a basic overall work out that are missing because I either can't do them or I'm not allowed to do them.

So the first exercise I do after riding 3kms on the bike (plus as fast as I can for 1 minute, which will be gradually increased as my fitness increases) is this....

The idea is I keep my arms in as close to my side as possible (protecting my shoulder) and make sure I'm pulling all the way back, pressing my shoulder blades together. I need to keep my back straight and keeping my core engaged to protect my back and shoulder.
So I'm using all my fat body weight to do the exercise, so that means it's a really good work out with all the weight I'm carrying around, but I don't think it would be that good an exercise for someone who is quite light in weight.

Wednesday, 29 June 2016


This morning when I arrived at the gym there were no PT's being done so I could get my measurements taken so I have something apart from weight to judge on how I'm going with my fitness and body improvements.

So my measurements today are:

Chest - 107 cm
Left Bicep - 34 cm
Right Bicep - 35 cm
Waist - 116 cm
Hips - 119 cm
Left Quadricep - 64 cm
Right Quadricep - 64.5 cm
Left Calf - 42 cm
Right Calf - 42 cm

And the weight of my frumpy flubber is 105.75 kgs.

These measurements put me in the morbidly obese category!

Now for the good news...

Today was the first day where I actually enjoyed myself in the gym from start to finish, on the bike (3kms at an average of 100 on level 6) lifting the weights, and the bit that's the hardest and hurts the most for me, the stretching.
So that is something to celebrate, it means I've got my mind into the right place for being able to stick at the work out and making it happen.

Unfortunately I don't enjoy the after part one little bit,
as even doing nothing has the potential to really knock my body around so working out makes even the short drive home a struggle and is why I drive there because I'm worried I will struggle to get home if I walk and would probably need my walking stick (this is an issue with CMT, and to be honest would happen even if I just sat on the bike and didn't do much, or like yesterday I was simply walking around in town, it's how my body reacts)

I think I need to do something about the after effect of total exhaustion I get and to stop the morning from vanishing without achieving anything, this wont stop the exhaustion but it will stop me from fully surrendering to it.
So from tomorrow I've decided that as soon a I've finished eating my breakfast and before my hot drink I need to get straight in the shower and get dressed, even if I am struggling to move, I just need to push myself to make it happen so that I don't waste to much of the day.

Monday, 20 June 2016

Bowen Treatment Today

Today I got to hover between relaxation and intense pain as I lay on the treatment table getting a Bowen treatment from Ron Hutchesson.
It was actually really good to be told and to feel that it was only taking one pressure/movement in each spot and there was an instant relaxation of the muscle that was being treated. Even my hamstrings that were so tight they were like solid rock relaxed instantly, and the relief felt across my back as everything returned to it's correct position was wonderful.

You wouldn't understand, but this isn't the normal reaction I get when i have a treatment, well the pain is always intense because the more that is wrong with you the stronger the pain is, but this can vary from person to person and the therapist adjusts so that if you can't handle a lot of pain he will make it hurt less...I've been going to Ron for many years and he knows I can handle the intense pain because of the relief it brings is totally worth it because it makes it easier for me to get around. For me what has been normal is that it often takes a few goes around one muscle area to get the relaxation, and often a follow up a week later to finish off the the treatment. Ron said that for once it just seemed to be just normal muscular stiffness and tightness because of starting back at the gym and using muscles I haven't been using in a long time. This means I'm doing something right with what I'm doing between the gym, physio, stretching and massage and that is so good to know.

This is something that excites me and makes me hopeful that I can get back to some form of normal movement and being able to push myself eventually at the gym. Yes it's early days, and no I'm not going to start pushing myself, besides I'll have Daniel cranky with me if I try and pull a stunt like that, his suggestion is staying at each stage for two weeks before increasing any weight or repetition so that we don't undo what we've gained.

Now don't get me wrong, not everything was okay, my right shoulder of course was still blah and argh, as there is still major issues with the rotator cuff, but several things did manage to give me more movement in that area but because of the swelling that is still quite bad in the bursa, it will still require more cortisone shots to help with this to hopefully get that movement back to something resembling normality.

I had originally planned on going to the gym this afternoon and sitting on the stationary bike and working on getting some kms done (I never work out or in the past played sport the same day as a Bowen treatment as the body needs the rest of the day to continue to relax so that the muscles remain in their correct position but I had thought just riding a stationary bike would be okay) but, as often is the case, the CMT part of me kicked in and made me quite exhausted (to be honest I could have crawled back into bed and slept for several hours) so I decided to give that a miss and I'll do my normal workout in the morning.

As I sit here at 2100 tonight I feel the exhaustion I get after a Bowen session really starting to kick in as my body goes into total worn out from doing nothing stage (this is a typical CMT reaction) the good thing with this is I will usually get a really good sleep when it's happening because of treatment rather than just because of my body and CMT having an argument.

Onwards and upwards tomorrow.

Tuesday, 14 June 2016

First gym session - Tuesday 14 June 2016

Today was my first proper gym session and it was so good to be back in the gym, sitting on a bike to do a warm up and cool down after using weights. I was happy about sitting on a bike again because as my shoulder got worse I couldn't even use the bike because I couldn't lean even the slightest on the handles which meant I would fall off as I have very little balance when it comes to doing things like that.

We are so lucky to have a gym here in Penola (Gear Up Fitness) and even better, they have moved to new premises (133 Church Street Penola) and there is more room to work out in and it no longer will get crowded when it's busy
(and more equipment still to come)

Video deliberately blurred slightly so as to not identify people in it

So, as you can tell I survived my first session, just taking it steady and controlled to make sure I don't upset my shoulder and do any damage now that it is finally starting to get closer to normal. And let's be honest, I don't want to hit to heavy a weight at the start as it will make my muscles really hurt and lets just say when you've found it nearly impossible to get on and off the toilet because you've overdone the weights you never want to go back to feeling like that again.

I have found the first new machine and I really like it because it is going to enable me to do squats once again and that makes me happy because it is my favourite exercise.

I prefer the standing option for this as I don't find it easy getting up and down from the floor (that's what happens when you get really fat, but also because of the lack of movement in my hips from the CMT) and as my shoulder is still not letting me get my right hand up to hold the bar safely to do squats in the standard way this will the replacement. 

I followed up this workout with doing some gardening today so I'm not really sure if the bits that are aching are from the gym or from digging and using the loppers with the start of a tree and creeper removal that is happening.

So basically I'm really happy to be back in the gym.

Tuesday, 24 May 2016

Looking after Myself

What I am doing to look after myself

 I have decided I need to be kind to myself and look after my body so that I can achieve the normal everyday things that people expect the average body to do.
Part of this involves me doing something for myself that feels good for me but does not necessarily have a long lasting benefit to my condition, it's about enjoying and relaxing in that particular moment in time.

For this I have decided it will be a hot stone massage.

I am going to Glow Body and Brow Studio that is run by an "old" school mate of mine (we wont discuss how old we are Alison) who has a salon in Mt Gambier as well as in Penola. Which is a bonus because it is something that I can do without having to do a 100km round trip (driving for me can be quite tiring)
I've had several hot stone massages from Alison, it is so relaxing and the heat that the stones put into the body makes nearly everything stop hurting for several hours, and to be honest, it's the only thing I've found that comes close to stopping the majority of my pain for any amount of time that isn't high level pain medication with cruddy side effects.

My next thing to do for myself is getting Bowen Therapy treatments, I have been having them for years, it has helped with all forms of injuries from playing sport as well as many of the issues that are specific to CMT.
Because there is always things not in alignment, joints slightly out of whack, muscles knotted, tendons overstretched, there is nothing relaxing about a Bowen treatment, in fact for me the whole treatment is quite painful and uncomfortable (apart from Happy Feet, always ask about getting Happy Feet done) but it puts everything back in alignment, fixes the issue with my TMJ (always a must to ask to have treated) and I sleep the best I ever sleep that night, only problem is I feel like I've been run over by a truck the next day as the body adjusts to being put back into position.
Now this pain only happens when there are things wrong with your body, and it increases depending on how much is wrong. My youngest daughter has been going to sleep on the treatment table since she was tiny, it relaxes her totally (even now as an adult) and it's just the specific problem areas that can be painful for her to have treated otherwise she finds it very relaxing.
What I find with Bowen is I get about 4 weeks of having my body cope with itself, so I think that this is something I will organise to do every 4 - 6 weeks.

Oh, and I use Ron Hutchesson (yes, related to my husband) here in Penola.

I met with the physiotherapist last week (Ben Williams at Northcare Physio) and I am quite happy with the discussion I had with him, the gym routine we discussed and his understanding of CMT and how it effects what I do when it comes to the gym side of things as well as everyday living.
I am going to meet with him once a month where we will look at how my body is responding to using the gym, get treatment on any area that might be being particularly painful or annoying and work on daily routines that I can do to keep and maybe even increase my flexibility.

So now I seem to have my team around me, a plan for regular things to happen, and some light at the end of the tunnel.

Wednesday, 18 May 2016

Creating my new support team

Today I took my first step towards creating my support team.
First off there is me:
If I'm not fully 100% in on this then it's never going to work, so my job is to keep my eyes on what I've set out to achieve, don't let things like bad days and physical issues discourage me, always turn up and be present in the moment with whatever it is I'm doing at the time and listen to advice and suggestions that the others on my team make.
Then there is my walking partner Reike:
 I know, it's hard to believe he knows how to be active,
but he is really good at dragging me along behind him.
And if you saw the previous video you can see he knows what pace I can manage and does his cruising around on the long lead accordingly.
Reike also is good for me on those bad days, he knows how to snuggle up next to me and just accepts me for who I am (like all dogs do)
And now my third support is Gear Up Fitness, my gym in Penola.
Thanks to Daniel, who has done a bit of research and bounced some ideas around, we are on our way to creating a routine that I can follow each time I'm at the gym. He reckons I can combine some of what I was doing previously with using standard weight routines, using elastic bands and just working nice and precisely and slowly so as to keep in control of my body and where it is located (which isn't always easy as lack of body awareness is another issue)
Tomorrow I have an appointment that will hopefully add a new member to my team. I have a meeting with a physiotherapist (who knows what CMT is....YAY!!) to work on putting together a routine that will help my body to be able to achieve things. I need to work on keeping some flexibility in my body as the muscles and tendons "cramp up" taking this away and the less of that movement I have the more painful everything becomes.
So here's cheers to creating a new team to help me achieve!

Tuesday, 17 May 2016

So what do I begin with?

What is Charcot Marie Tooth (CMT)?
That is the question I've been asked by a few people,
so I'll try to answer you as best I can.
Let me start by saying that CMT can be quite varied in how it presents and effects different people, so what it is for me might be nothing like it is for someone else.
CMT is a Hereditary Motor and Sensory Neuropathy, an inherited neurological disease that in the majority of cases has a very high chance of being passed along within the family to the next generation.
For me, my mum has it, she got it from her Dad, her sister also has it, and my sister has it too. There are other family members who also have it, there is a very strong inherited factor in my family.

CMT caused deterioration of the nerves including the feet, legs, arms and hands but can go on to effect things like your shoulders, breathing and normal organ function within your body.
The severity can vary greatly from person to person, even with the same variation of CMT within the same family (there are over 50 types of CMT, not all of them able to be precisely diagnosed easily, and there is no known cure at the moment)

Weakness in the legs effects your balance so things like walking, running, going up or down stairs (yes I can fall up stairs, I consider it my special talent) walking on uneven ground or just standing still can cause problems (for me standing still in the one place causes the most amount of discomfort and pain, in fact you very rarely see me standing completely still for very long)
I also tire very easily and have trouble doing detailed work like sewing, knitting, doing up laces. Even normal things, like unscrewing a bottle top, fastening buttons, turning on a tap or opening a certain door handles can be difficult for those with muscle wastage in the hands.

I have to concentrate when I walk, I cannot remember a time I didn't have to do this, I have to tell my foot to pick up properly so it doesn't catch on the ground, I have to scan the ground so I can adjust my footing, I can't walk along holding a conversation as I need to be aware of exactly what my feet is doing every single time I move.

Foot issues such as high arches or flat feet, weak ankles and tendon tightening can cause bigger problems. Sometimes (actually who am I kidding most of the time we will need to do one or all of these) we may need to wear foot orthotics, braces or undergo surgery.

With all of this weakening and numbness comes the risk of doing other injuries because you body doesn't work quick enough to protect itself and I don't always feel the warning signs that something isn't right. I broke bones and tendons in my foot but still walked easily on them, the only reason I knew something wasn't right was because there was a weird feeling in my foot, which was the bones grinding, while I was walking that I thought needed to be checked out.

And finally, there is pain.
I've had pain my whole life.
I never known what it's like to not have pain.

For those wanting a more detailed description of what causes CMT.....
A nerve cell communicates information to distant targets by sending electrical signals down a long, thin part of the cell called the axon. In order to increase the speed at which these electrical signals travel, the axon is insulated by myelin, which is produced by another type of cell called the Schwann cell. Myelin twists around the axon like a jelly-roll cake and prevents the loss of  electrical signals. Without an intact axon and myelin sheath, peripheral nerve cells are unable to activate target muscles or relay sensory information from the limbs back to the brain.
CMT is caused by mutations in genes that produce proteins involved in the structure and function of either the peripheral nerve axon or the myelin sheath. Although different proteins are abnormal in different forms of CMT disease, all of the mutations affect the normal function of the peripheral nerves. Consequently, these nerves slowly degenerate and lose the ability to communicate with their distant targets. The degeneration of motor nerves results in muscle weakness and atrophy in the extremities (arms, legs, hands, or feet), and in some cases the degeneration of sensory nerves results in a reduced ability to feel heat, cold, and pain.
The gene mutations in CMT disease are usually inherited. Each of us normally possesses two copies of every gene, one inherited from each parent. Some forms of CMT are inherited in an autosomal dominant fashion, which means that only one copy of the abnormal gene is needed to cause the disease. Other forms of CMT are inherited in an autosomal recessive fashion, which means that both copies of the abnormal gene must be present to cause the disease. Still other forms of CMT are inherited in an X-linked fashion, which means that the abnormal gene is located on the X chromosome. The X and Y chromosomes determine an individual's sex. Individuals with two X chromosomes are female and individuals with one X and one Y chromosome are male. 
In rare cases the gene mutation causing CMT disease is a new mutation which occurs spontaneously in the individual's genetic material and has not been passed down through the family.

Monday, 16 May 2016

Walking in the Vineyards

My day began with being awake at 0345 with all the tendons in my feet playing up (is a similar feeling to having cramp) and my feet being curled up tightly so I had to hobble out to the lounge room and get my massage ball and work really hard on getting them back to a normal.

Now I know reading the word massage ball sounds like it should be a pleasant experience, but there is nothing nice about using one when you have CMT, it's a bit like trying to walk out pins and needles in your feet, it hurts a lot and doesn't stop quickly like pins and needles do.
Luckily the massage ball did the trick and I was back asleep by 0500 and slept through hubby's alarm going off and him going to work.

Once I woke up and had breakfast I knew if I didn't get out the door and go for a walk the energy I had would quickly vanish and it would never happen today and today had to be the day that it all began, because I said so!

So I loaded Reike (resident freaky fur ball ) into the car and headed to the edge of town. Reike doesn't do so well with other dogs or cats and there is always dogs wandering around and lots of cats sunbaking close by so for my sanity it's easier to drive past them all and keep it nice and quiet and peaceful.

Today I found a spot that I could walk up and down, I have to make it like that because I never know when my energy is going to disappear, my feet are going to start refusing to work or the pain is going to hit hard because that's what happens with CMT.
It wasn't a huge distance, but it was movement and it felt good to do and I could tell the fur ball was enjoying himself as well.
This will be my go to spot to begin with, I can increase the number of times I walk up and down in this small area until I am comfortable to move on to covering longer distances. I figure being kind to myself is the way I have to start, because this small amount of walking meant I was nearly crying from the pain in my feet once I got home, but a boiling hot shower and stretching has helped get that back to bearable levels.

Saturday, 14 May 2016

This is what started it all!

This is what started it all!
A trip to Adelaide to see a specialist
that involved staying in one of those tiny motel rooms,
you know the ones with that giant mirror that you can't hide from.
It had been a long time since I'd had to look at myself so closely and in such horrible detail.
Disgusting, obese, revolting, horrible, pathetic.....
those words and many more went through my mind.
Over and over again those words repeated themselves,
getting louder and louder until I could barely think.
I knew I had put on weight since my shoulder had become so bad that I had stopped doing yoga, walking and going to the gym.
This was due to a combination of an old injury that had flared up and complications that had developed from having Charcot Marie Tooth (CMT).
But that is just an excuse and I should have been able to find a way to get around this. I shouldn't have given up the way I did, I should have fought through the pain because that is what I have done every day of my life and I'm not exactly sure why I just gave up with everything this time.
Maybe I was just so exhausted with fighting and arguing with my mind and my body every single day that I just didn't want to do so much anymore.
But that's still an excuse, and not even a good one.
Nothing justifies that I gave up on living life as much as I did, there is nothing positive or healthy about it all.
This needs to change...
and it started yesterday with me making an appointment to start regular sessions with a physiotherapist
(I found one that actually knows what CMT is, an that's not always easily done as usually even the GP's have no idea what it is)
This is to get a proper assessment of what my body can and can't do, which is different from what all the nerve measurements and scans say, because that's just numbers and diagrams, I want to deal with actual movement.
This is about getting a regular stretching routine worked out,
to get myself back into the gym and to get walking again.
I would really like, and to be honest I need some support for my new journey, from both those around me and those I talk to on line.
This is leaving me very open, and most of you know that I keep to myself most of the time and avoid people who have given me any grief or trouble but
I decided to do it this way because I'm seeing other blogs and Face book pages where people have been really open and honest about what they are doing and what they are going through and it has helped the to becoming a better person.
Please help me on my journey.