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.