TABLE OF CONTENTS (Awareness Month 2015)

TABLE OF CONTENTS
CMT Awareness Month 2015 

 
Thankyou for joining me this month!
   
Below is a directory of the blog post topics that have featured during September 2015 in celebration of International CMT Awareness Month.

CMT United Kingdom have a wealth of information! So anything not covered during this series on my blog, plus extra info on many of the things I did cover can be found at www.cmt.org.uk 
   
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     What IS CMT? (Overview)
What is CMT
10 CMT Facts
             
Benefits
Open Letter to Iain Duncan Smith
             
Daily Issues
Me & My CMT
Daily Challenges
You know you have CMT when... - video    
The Spoon Theory
           
Fatigue
Fatigue
   
Mental Health
  Brains!
Depression & Disability  
     
Pain
 My CMT Pain
Treatments
           
Symptoms
 Feet & Legs
Hands & Arms
Other Symptoms
Gallery of Hands & Feet
       
Treatments
 Treatments
        
Wheelchairs
Wheelchairs are not giving in!
Walking Wheelchair Users
        
Awareness
The importance of Awareness
Open letter to those without CMT
     
Other
3 People's Stories - Video
Cripple, what's in a word
Life before the internet
Local press article
Harmful drugs    
   
September has been a fabulous month with lots of positive feedback and support garnered from all angles.

Please remember that Charcot-Marie-Tooth Disease doesn't just affect us for 1 month a year! It is part of our daily lives.

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  www.CMT.org.uk
         

Open Letter to IDS (CMT Awareness Month 2015 - DAY 29)

Welcome back to CMT Awareness Month. Day 29 is upon us!
       

          

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Open Letter to Iain Duncan Smith

Today I want to share with you a fabulous open letter, not written by me, to the UK's Minister for Work and Pensions.

You can read the Open Letter HERE

The letter is clearly written and shows great compassion for those being targetted by the governments so called "welfare reform".

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Please share these posts far and wide!
          

  www.CMT.org.uk
      

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.
 
xxSAMxx

     

Walking Wheelchair Users (CMT Awareness Month 2015 - DAY 28)

The end is in sight for International CMT Awareness Month!
It's been an exciting month and I hope you have enjoyed what I have had to share with you.
              

                   
Walking Wheelchair Users 

There seems to be a common misconception that being in a wheelchair means that you have either paralysis, or otherwise have no use of your legs whatsoever.  This is untrue yet still people question my need for a wheelchair, whether with a scathing look or sarcastic side of the mouth comments.
 

       
I am increasingly reliant on a powerchair to get around, however I can walk.  In fact I try to walk as as much as possible in order to slow the wasting of my muscles.

I want to try to explain how it feels when I walk and try to balance either whilst moving, or whilst stood still.  
  
This then may shed some light on why this particular walking "cripple" relies on a wheelchair at times.
   
Whenever I attempt to walk I have to concentrate so hard on every little step, carefully thinking about where to place my foot because CMT impairs my ability to sense the position of my limbs.

I have to carefully plan every single trip outside of my home, considering whether there is somewhere to park right outside my destination, places to sit once there, and not too much walking once inside. Knowing the type of terrain is also important, grass, cobbles and steps are all no no's with slopes and other rough ground being issues also.

Walking with crowds of people is impossible now as I simply cannot stop or change direction without falling.  Standing still, to have even a brief conversation, or to pay for items at a till in a shop is so tricky.  My balance is appalling and I am usually seen swaying like a drunk pirate if I have to stay still for even 10 or 15 seconds!

Because of these issues, just the sheer effort of conscious walking, even a few yards, usually leaves me with "jelly legs", wobbly knees and general all over fatigue, thoroughly ruining any chance of me enjoying my trip to the shop or other adventure I've chosen to spend my spoons on!
         
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 So, if you see me out in my chair one day...

...then shuffling round with my walking stick a few days later, please understand that this doesn't make me a con artist, "faker", or benefit cheat.  It simply means that my physical capabilities and needs on those two occasions differed.  Similarly, if you see me stand up from my wheelchair, maybe to reach an item off a shop shelf, please don't judge.

We should all accept that disabilities vary and it is neither fair nor appropriate to question a persons "need" for a wheelchair or other aid that can help a person (disabled parking bays spring to mind here!).
     
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Thank you again for joining me on my CMT blogging journey.

To read my other Awareness Month posts, simply click on the "Awareness Month" tag at the very bottom of any of these posts!

             

Please share these posts far and wide!
        

  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx

  

Open Letter to People without CMT (CMT Awareness Month 2015 - DAY 27)

 Having Charcot-Marie-Tooth Disease means that many things change.  Many of the effects of CMT are unseen, like the effect pain and fatigue have on every day life.  Just because you can't see the changes doesn't mean they aren't real.
  

Most people don't understand much about CMT and it's effects, and of those that think they know, many are actually mis-informed. 

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me. 
  
 Before I start, know that this is not a cry for attention, nor is it a plea for pity. Everyone in this world has their own challenges to deal with and I'm simply sharing mine.

      

       

Please understand that being disabled doesn't mean I'm not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and my family and friends, and most of the time I'd still like to hear you talk about yours too.

  

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

    

Please understand that being able to stand up for two minutes, doesn't necessarily mean that I can stand up for five minutes, ten minutes, or an hour. It's quite likely that doing that two minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either.

   

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything that I do.

    

Please understand that the effects of CMT are variable. It's quite possible (for me, it's common) that one day I am able to walk to the bathroom and back, while the next day I'll have trouble getting out of bed. Please don't attack me when I'm worse by saying, "But you did it before!". If you want me to do something, ask if I can and I'll tell you.
   

Similarly, my disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

    

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. Chronic illnesses may cause secondary depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated - if I could possibly do it that, I would.

    

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now. It can't be put off or forgotten just because I'm doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

   

Please understand that I can't spend all of my energy trying to get well from my incurable chronic disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability such as CMT is coming to the realisation that you have to spend energy on having a life while you're disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with CMT.

     

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. If there was something that cured, or even helped, people with CMT then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CMT, if something worked we would know about it.

   

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.

         

I depend on you - people who are able-bodied - for many things.

But most importantly, I need you to understand me.
       
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This article has been carefully adapted, with thanks to Ricky Buchanan, from the original 
"Open Letter to those without CFS/Fibro"

On another note, and top five a balanced view, I'd also like to share this "healthy" bloggers response to the original Open Letter.  I've just read and think all people with chronic illnesses could read and learn from! 
   
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Please share far and wide!
       

  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx

  

Me & My Pain (CMT Awareness Month 2015 - DAY 26)

Welcome back to CMT Awareness Month on my blog!
Today I would like to address the subject of pain.
           

My CMT Pain
   
Living with chronic pain is hard on you, both physically and emotionally. There are days when I wish I could hit the pause button and walk a mile in someone else's shoes for a change. 
    
I have Charcot-Marie-Tooth Disease Type 1A, and like all the forms of CMT, symptoms can vary from person to person. Pain is a symptom that many with CMT experience and once this has been niggling away at you for some time, it then earns the title of "Chronic Pain".

Pain in people with CMT can take the form of either joint and muscle pain (caused by the stresses that CMT places on your body), or neuropathic pain (caused by damage to your nerves).
     

   
Along with localised pain in my feet, ankles and knees, I have more widespread musculoskeletal pain in my hips, back, shoulders, neck, forearms and fingers.  Accompanied by the electric shocks and creepy crawly sensations of neuropathic pain, I don't have a single day free from the constant nagging aches and pains.

Aching bones in my feet are joined by severe arthritis in my right ankle causing stiffness and gnawing pain which increases particularly with movement in the joint.  Aching knees and hips throb away in the background whilst several areas of my back and shoulders give me grief

My nemesis, and the one overriding type or location of pain for me IS my back.  I have a mild curvature of the spine which, added to the general strains but on my back from poor posture and walking gait, cause severe spasms at times.  Totally incapacitating, these periods of pain can stop me in my tracks and the only relief is time, and heat.
   
Coping With & Treating Pain
 
Sleep disturbances are my biggest pain related problem, frequently resulting in restless nights of frustration, twitchy muscles and fidgety legs.  Depression and chronic pain are intrinsically linked and, if I can switch off my mind for long enough, the mindfulness techniques I am learning and practising to help me manage my depression also cross over and aid with pain and lack of sleep.

I can particularly recommend body scan meditation (such as the one below) which really focuses on each part of the body, recognising sensations before moving on.  Definitely worth a try.

This being said, I'm still learning, and life is one long journey and lesson. I struggle to really let go and relax into the process.
   
There are of course several ways to try and control or reduce pain, including physiotherapy, orthotics, medications and pain clinics. Certain surgeries can also help reduce localised pain.
   
CMT UK have a section on their website dedicated to managing pain. You can find it HERE.
 
I am a little more dependent on prescription medications then I would ideally like and that in itself frustrates me! Everyone is different; it can be a lifelong battle to keep pain under control and by "under control" I mean a reduced level of pain, not completely eradicated.

With a certain amount of understanding of your body's limits, a good state of well-being can be achieved, but it really helps if those around you understand even a little bit of what you go through.
 
    Understanding Chronic Pain
 
As you struggle with all the intricacies that come with it, you must also deal with spoken and unspoken prejudice about your condition. Do you really feel as bad as you claim? What about that day when you were a little more active and in a better mood? Are you maybe just lazy? Is your life really as difficult as you claim because it doesn't seem like it? Why are you taking a disabled parking space from someone who really needs it? 

These are all questions people with chronic pain and long term disability face in life.  Sometimes these questions are voiced by friends, family or work colleagues, born out of frustration at you not being able to do something to the standard of a "normal" person (whatever one of those is!).  Sometimes, these are questions we ask ourselves!  Feelings of failure and resentment of our own bodies can play mean tricks on our minds.

Tomorrow I'm going to share with you my adaptation of an Open Letter from a Person with Chronic Pain. Please pop back and read it as it really ties in with today's post.
   

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I do hope this has helped you, whether you suffer from pain yourself, or to simply want to understand chronic pain a little better.  I'll finish this rather long and serious post with a little CMT humour!...
 

   
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  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx
      

Press Coverage (CMT Awareness Month - DAY 25)

Welcome back to CMT Awareness Month on my blog!
    

There's been some fabulous press coverage of CMT this month

Read many of the articles HERE!

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I'm still not done! There's a few more days to go, so keep popping back!
       

  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx

  

Harmful Drugs (CMT Awareness Month 2015 - DAY 24)

We are nearing the end of International CMT Awareness Month but still not there just yet!

If there's any topics you would like to see me cover during this last week, please leave a comment at the end of this post!
     
Medications can form an important part of managing the symptoms of CMT for many. At the same time, there are several groups of drugs which can cause or worsen a persons CMT.  

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Harmful Drugs

The following information is taken directly from the CMT UK website at the following link: 

http://cmt.org.uk/how-we-help/drug-alert/

   

    

The medications listed below are potentially toxic to CMT patients. Vincristine & Taxols have been proven hazardous and should be avoided by all CMT patients, including those with no symptoms. The remainder of the medications listed below present varying degrees of potential risk for worsening CMT neuropathy. 

  

Before taking any medication or changing medication, all CMT patients should make sure the treating physician is fully aware of their medical condition. 

   

Definite High Risk (including asymptomatic CMT)

   

Vinca Alkaloids (Vincristine)

Taxols (paclitaxel, docetaxel, cabazitaxel)

   

 Moderate to Significant Risk    

Amiodarone (Cordarone)

Bortezomib (Velcade)

Cisplatin & OxaliplatinColchicine (extended use)DapsoneDidanosine (ddI, Videx)DichloroacetateDisulfiram (Antabuse)Eribulin Mesylate (Halaven)Gold saltsIxabepilone (Ixempra)Leflunomide (Arava)Metronidazole/Misonidazole (extended use)Nitrofurantoin (Macrodantin, Furadantin, Macrobid)Nitrous oxide (inhalation abuse or Vitamin B12 deficiency)Perhexiline (not used in U.S.)Pyridoxine (Although megadoses [10 times or more the RDA] of Vitamin B6 may be harmful, high intakes of vitamin B6 from food sources have not been reported to cause adverse effects.)Stavudine (d4T, Zerit)SuraminThalidomideZalcitabine (ddC, Hivid)   

Uncertain or Minor Risk   

  5-Fluoracil

AdriamycinAlmitrine (not in U.S.)ChloroquineCiprofloxacin (Cipro)Cytarabine (high dose)EthambutolEtoposide (VP-16)FluoroquinolonesGemcitabineGriseofulvinHexamethylmelamineHydralazineIfosphamideInfliximabIsoniazid (INH)Lansoprazole (Prevacid)MefloquineOmeprazole (Prilosec)PenicillaminePhenytoin (Dilantin)Podophyllin resinSertraline (Zoloft)StatinsTacrolimus (FK506, ProGraf)Zimeldine (not in U.S.)a-Interferon   

Negligible or Doubtful Risk

   Allopurinol

Amitriptyline

ChloramphenicolChlorprothixeneCimetidineClioquinilClofibrateCyclosporin AEnalaprilGluthethimideLithiumPhenelzinePropafenoneSulfonamidesSulphasalzine 

       

Neurotoxic Medications and 

Worsening of Neuropathy

        

Apart from Vincristine and Taxols, there is no proof that any of these drugs worsen CMT, but if you are concerned, there are plenty of alternatives.

One of our advisers described the situation like this to us:

“If a person unaffected by CMT – ie, at 100% “nerve” capacity – takes one of these drugs, and suffers some neuropathy, and  is reduced to 80 or 90% capacity, that is not significant.  But if a person with CMT – say at 50% capacity – loses 10% of function, then that’s a significant reduction in function”

     
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The above list is correct as of 24 September 2015.  Please refer to the CMT UK Website to keep updated of any changes!

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Please share these posts far and wide!
       

  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx

  

The Spoon Theory (CMT Awareness Month 2015 - DAY 23)

What does a chronic illness FEEL like... as described in the perfect cutlery filled metaphor! 

Back in 2003, one college girl finally came up with the perfect way of expressing just how chronic illnesses (in her case Lupus) impact every single tiny decision you make each day.

Below is a snippet to hopefully peak your curiosity!

The full, original article can be found at butyoudontlooksick.com.

It is well worth a read. Noone has ever described life with an energy sapping chronic condition quite like she did!

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Please share these posts far and wide!
       

  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx

  

Treatments (CMT Awareness Month 2015 - DAY 22)

Welcome back to CMT Awareness Month on my blog!
 

    

I don't have a huge lot to write about today so you can all breathe a sigh of relief!

If however you would like to do a bit more reading, and/or you would like to know more about treatment options, read on!

  
CMT UK have an amazing website full of useful, accurate and up to date information and resources.

Click HERE to specifically read about treatments.

Click HERE to read about surgery

Click HERE to read about pain management

OR
 
Click HERE to read about managing your CMT.
(This section includes the above topics plus much much more!)
  

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Again, please share these posts far and wide!
       

  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx

  

Depression and Disability (CMT Awareness Month 2015 - DAY 21)

Welcome to day DAY 21 of International CMT Awareness Month.
   

Depression and Disability

Today I would like to write a little about the impact physical disability can have on mental well-being.

Living with any long term condition is difficult, I know I've certainly had my ups and downs. It can feel that other people get through daily life with more ease. It can seem that there are things you would like to do that you will never be able to. And dealing with other people's perceptions of you can make navigating through each day a chore.
       
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Disability can be incredibly lonely and the physical toll has at times been a huge burden on me.

I find the progressive nature of the disease hard sometimes. My CMT has gone through the usual stages from childhood tripping and poor handwriting to the ever increasing physical inadequacies of today. And of course, it doesn't stop there! Charcot-Marie-Tooth Disease continues to get worse throughout life.

Whilst time has given me the experience and tools to deal with many of these issues, others were much harder to overcome.

Each day is different and most days I never know how I'm going to be. Some days I wake up thoroughly exhausted and in pain before I've even got out of bed, and these days can be the most frustrating.
   
Disability can be extremely isolating, even though people usually do not intend to do anything to exclude you. For me, this manifests itself in the lack of invites to family skiing holidays, or to the many family outings that my very active family take part in.  Obviously I could not take part in these, but my family are naturally active, so these are inevitably the types of holidays and day trips they choose. I find myself feeling on the edge of my family at times but I have to remember that they love me and certainly don't intend to exclude me in any way!
   
My depression was not entirely caused by my disability. Bouts of depression could be triggered by my CMT, and it was also triggered by extreme stress. Other times, and perhaps the most frustrating, there seemed to be no logical reason for my slump in mood.  Which was the initial cause of my depression, I cannot say. Which came first? The chicken or the egg!  

Whatever the cause, depression can be so debilitating to the person experiencing it.  It took me to some very dark and scary places before I finally managed to start the uphill climb back to a more balanced state.
   
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Find what works for you!

At one point in my life, not many years ago, my confidence, feeling of self worth, and general state of mind were at rock bottom, with no sign of improving.  Whilst I've come a long way, I still often feel like the odd one out, out of place and uncomfortable in my own skin.  My body image and self-esteem was low and this has improved, although there's still much room for improvement yet.
   
It took alot of strength from within to accept the ever changing nature of my CMT and to learn that it does not define me!  Rather than hoping for things to change I started to adapt to my situation. Educating myself about CMT was a critical part of that, and CMT UK were on hand with all the info I needed. Knowledge truly is power!

Nowadays, CMT DOES form a large part of my identity, but for completely different reasons!  I have found great comfort, strength and camaraderie in the CMT community and armed with everything I have learned I am now in a position to be able to help others with CMT.
   
It can be difficult to live life with a chronic illness, and it is important to remember that fact and not beat yourself up if you have a bad day.  It is so important to build a strong network of support, from family, friends and others with the disease. Educate yourself and your loved ones. Learn about what you can do to makehelp yourself feel better.

For me that, has taken the form of medication (anti-depressants to rebalance the serotonin levels in my brain). I have also taken active measures to reduce the stress in my life and to also adapt the way I handle such situations. 

In the last six months I have delved into mindfulness and meditation as a way to organise and put aside busy thoughts in favour of concentrating on and enjoying the present moment. 

 
I don't profess to have found the magic answer.  However, despite the inevitable down days, I can firmly say that I am happy. Whilst there are still some things I could cope with better, I have achieved a good balance in my life, and for that I am thankful.
  

       
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Thankyou for sticking with me through this particularly long post.  To read my other Awareness Month posts, simply click on the "Awareness Month" tag at the very bottom of any of these posts!

Please share
          

  www.CMT.org.uk
       

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.
 
xxSAMxx

  

Brains! (CMT Awareness Month 2015 - DAY 20)

Hello again from me, on day 20 of 
International CMT Awareness Month!
   

                   
Charcot-Marie-Tooth is a disease of the peripheral nervous system and does not include the brain or spinal cord. 

This therefore means that brain function is not affected.  

That being said, any chronic condition can have a plethora of related issues which, whilst not specifically caused by CMT (in my case), can result from recognised symptoms or indeed their treatments!

Physical examples of this could be issues with knees, hips or backs as a result of the CMT walking gait, poor posture or weak muscles.

Related issues can also manifest itself in other ways.  Issues coping with day to day life can be common in those with chronic conditions, leading to depression. Additionally, the side effects from many medications taken for pain relief can have cognitive effects including drowsiness, confusion and impaired ability to concentrate.

I guess what I'm saying here is that the effects of a chronic illness don't end with the list of symptoms that are specific to the condition. The effects can be far reaching.

I am going to cover the link between disability and depression in more detail tomorrow as I feel it deserves its own post so please join me then!
   
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Please share these posts far and wide!
       

  www.CMT.org.uk
       

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.
   
xxSAMxx

    

Ooops! There goes DAY 19 of CMT Awareness Month

     

Well!, I ran out of time today and completely forgot to schedule a post! Ooops

So, if anyone is still awake, pop over the www.cmt.org.uk and have a nosey around!

They are a fabulous charity, well worth considering when looking for causes to donate to.

In the mean time, to read my other Awareness Month posts, simply click on the "Awareness Month" tag at the very bottom of any of these posts!
  

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  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx

  

Wheelchairs are NOT giving in! (CMT Awareness Month 2015 - DAY 18)

Hi guys and welcome back. Today I want to talk a little about using ANY mobility aids, whether they be walking sticks, crutches, or a wheelchair.
     

  Many people with chronic conditions find themselves at some point in their lives in the position of needing to use mobility aids of some description.

There are many options out there that can help people with Charcot-Marie-Tooth disease.

Various leg bracing options can be available as well as the option to use walking sticks, rollators or crutches.  There is also the option to use wheelchairs in order to make getting around easier.

"But isn't that giving up?"

Certainly not! A lot of people see using a wheelchair as giving up, giving in to their condition. "I'm not giving into it; I'm not using a wheelchair".

The way I see it, anything that makes day to day life easier and more enjoyable can only be a good things right?

Until recently I had a manual wheelchair for very occasional use which didn't really see the light of day. It relied on my wife pushing me around and made the whole experience not as enjoyable for either of us.

One of the best things in my life and one that that has recently allowed me to experience the world more fully with disability is my power wheelchair.  I am still in the process of sorting things so that I can transport my chair in my car and once that is sorted there will be no stopping me!
 
All this is not to say that I didn't have some apprehension when starting to use mobility aids. When I initially started using a walking stick, after hobbling around for several years I did finally did " give in" and begin using a walking stick; gradually at first until eventually it was full time.  Most of my insecurity came from how work colleagues and family would view me.  Therefore I initially only started using a walking stick when out in public away from my home town and work. 

Inevitably I had to begin using my walking stick around the people I knew and of course once I did that they treated me no differently!  Since that time I have progressed from using a single walking stick to at times using a rollator and as mentioned previously a manual wheelchair.

The walking stick still of course gets plenty of use today, but now having my power chair has opened a whole new world of options for me allowing me to be more independent and less clingy! I'm looking forward to the freedom to move around and determine where I am going next. It will allow me to zip around on my own, to go shopping, to go to museums and nerdy conventions and decide where I would like to be rather than let someone else decide for me.

Seeing wheelchair as mobility and freedom instead of a loss takes a little time for some people.  The ability to stand and walk is not a matter of character and if you do need a wheelchair, you have not failed. You are simply giving yourself a different way to get around.

I will end for today by simply saying that I am looking forward to being able to get around without worrying about being knocked over or falling!  I am so looking forward to not feeling exhausted from the sheer task of keeping myself upright. I look forward to instead being able to use my energy on the fun things!!

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Do pop back again! I still have much to talk about!

To read my other Awareness Month posts, simply click on the "Awareness Month" tag at the very bottom of any of these posts!
    

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Again, please share these posts far and wide!
       

  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx

  

Local Press Article (CMT Awareness Month 2015 - DAY 17)

This week I was featured in our local newspaper! This wonderful article joins several others making it into local papers throughout the country, this International CMT Awareness Month.
 
Click HERE for the article on the Craven Herald website!
          

   
Craven Herald newspaper article
17 September 2015
   

 
Do pop back again! I still have much to talk about!

To read my other Awareness Month posts, simply click on the "Awareness Month" tag at the very bottom of any of these posts!
    

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Again, please share these posts far and wide!
       

  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx

  

Fatigue (CMT Awareness Month 2015 - DAY 16)

As we enter the second half of International CMT Awareness Month, it seems an appropriate time to talk more about fatigue!

     
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FATIGUE 
     
According to medicinenet.com, fatigue is defined as "The lack of energy and motivation (both physical and mental). This is different to drowsiness, a term that describes the need to sleep."
    

         
Fatigue is the biggest thing I struggle with each and every day.

Even walking to the fridge to pour a drink = need to sit down to recover for at least 20 minutes before bring able to do anything else. The same goes for every other daily tasks.
 
Every little thing is just exhausting both physically AND mentally!
   

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Please share these posts far and wide!
 
To read my other Awareness Month posts, simply click on the "Awareness Month" tag at the very bottom of any of these posts or click HERE.
          

  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx

  

You know you have CMT when.... (CMT Awareness Month 2015 - DAY 15)

It's Day 15 of International CMT Awareness Month, and that means we are halfway through!

Time for a bit of a laugh, with a serious message of course!

Bethany is girl in the USA who has CMT.  
She and her Mom made this two-part YouTube video 
entitled "You know you have CMT when...." 

Whilst it is designed to promote understanding of the condition, it is more than okay to have a chuckle along with us!
     

   

To read my other Awareness Month posts, simply click on the "Awareness Month" tag at the very bottom of any of these posts!
   

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Again, please share these posts far and wide!
       

  www.CMT.org.uk
    

If you are interested in finding out more, the UK's official charity for the disease, CMT United Kingdom, have a wealth of information.

xxSAMxx