Charcot Marie Tooth

Well I collected my AFOs on 1st July and I wrote about the problems I?m having with finding shoes that they will fit in (in my previous blog entry on 4th July).

Since then, I have discovered that my AFOs fit in Crocs! Though not ideal obviously (as Crocs don't support my feet well enough and allow my ankles to turn too easily) they are a more than adequate temporary measure until my continuing search for shoes continues! Anything is better than nothing at the moment so at least I can wear them to find out if any adjustments need doing.

I have been wearing them in my Crocs for an every increasing time every day (started with half an hour) and wore them at work on Friday for 5 hours before I had to take them off after lunch time.

They do need some adjustments. They catch my left ankle and also rub and dig in under the ball of my right foot. Also, the ankle strap could do with attaching higher up and the wedge on the outside of the heel (put there so that my foot doesn't turn out) could do with being higher).

I am due back to the the orthotist at the end of the month but could do with setting the ball rolling for the adjustements sooner rather than later. I am reluctant though to risk seeing someone other than my usual orthotist as she is really really good. The guys I have seen previously have just not helped at all, despite going to see them 4 or 5 times for adjustments.

When I wore them on Friday, I also drove to work in them and although they take getting used to were surprisingly easy to drive in.

I can't wait to get them sorted properly. I envisage wearing them all day at work eventually. I do not feel as fatigued and even though I wore them for just half the day on Friday I still had some energy left when I got home, which I don't usually have. They really help with walking, I don?t feel like my knees are sagging and standing still is just totally different with them on! Usually when I stand still, my knees start to buckle very quickly and I start to sway, I can't stay with my feet in one place and usually end up stepping back and forth trying desparately to keep my balance! With my AFOs on I have been able to stand completely still, my knees don't feel as weak and I don?t sway..

So here they are! (with me in them!..)

OK, so my new AFOs arrived on Wednesday and they fit on my feet perfectly. They also fit in my shoes perfectly but I can?t get my damned feet and AFOs IN my shoes at the SAME time!

I got so frustrated I cried. 

The problem is that I can?t get my foot round the ?bend? (which is why I can?t wear wellies either!).  My foot just won't fit round the bend and my big toes and other toes get "stuck" on the insole of my shoe as my toes aren't mobile at all. 

I have tried putting my AFOs on my foot and then my shoe on and I?ve also tried putting my AFO in my shoe and putting my foot in.

I was so looking forward to getting them and I thought my existing shoes would be fine with them as the are Cosyfeet extra wide and extra deep ones that are supposed to be ideal for AFOs.

I even, whilst crying, and causing excruciating pain forced my foot round the bend to see if they were comfy once in but they are not, just too tight.

I don?t think it?s a problem with the AFOs cos they fit my feet perfectly (I know I won?t know if they are right until I?ve walked in them etc... ). I think it is a problem with my shoes no opening up enough towards the toe area.

I'm trying to find some more suitable shoes but I just don't know where to start (and I really don?t want to succumb to hospital made shoes again ).  I have been fighting for these AFOs for a year and a half now and I really need them.  They will make my life so much easier for me.

One of my dogs Lucy went missing this evening and I have never felt so useless in all my life.

I had to beg loan of a neighbours bike as mine has a flat tire (through not using it for a few years!). This was after stumbling about frantically for 20 minutes. I could barely cycle cos I was (and still am) shaking like a leaf and a lack the strength do be able to do anything much to help.

But we found her! (now for the most ridiculous part that I'm sure I'll laugh about tomorrow). She was in the house all the time... she can open doors and had managed to lock herself in the pantry.

I have been so worried, I cried and cried when I found her and my knees completely gave way resulting in me in a heap on the kitchen floor crying my eyes out and Lucy squirming all over pleased to see me.

I was frantic with worry and thought I was never going to see Lucy again. I couldn't bear the thought of it.

Emergencies such as these just go to show how much strength to keep going that a person can muster. I cycled for an hour and a half round and round, up and down hills, shouting her name, barely able to breathe!  This is all whilst having balance on a bike so rubbish that I had to give up risking cycling a few years back).

I don't know what it is that keeps people going in these circumstances but something was keeping me going way beyond my breaking point.

I went to the orthotists on Wednesday.

The woman I saw cast my leg a few weeks back and .fitted my AFO today.

She had it more or less spot on first time!   There are one or two very minor adjustments to do on the new left leg AFO and she kept my original right leg AFO too to do quite a bit of adjustments to.

I can't wait to get them back!  I'm really excited. I might finally be able to wear them now, they will help alot.

Someone at my work gossiped to my boss saying "why was I on facebook at 11 o'clock at night if I was off work sick because of tiredness"! I wasn't on facebook, I was actually posting to my blog at www.charcotmarietooth.webs.com, which in turn feeds to my facebook page automatically, but that is besides the point!

The naivety and narrow-mindedness of some people astounds me sometimes.

I should not have to justify myself and my actions to begin with but in the interest of explaining myself (gees, I'm always having to explain myself), the whole issue is that I was tired, exhausted in fact because I am often unable to sleep.

The clue is in the problem really... unable to sleep! hence why I was writing in my blog. What am I supposed to do for the hour after hour when I cannot sleep? Lie there and twiddle my thumbs whilst trying to ignore the very aches, pains, muscle spasms and general restlessness that are preventing me from sleeping?

Also, besides the point again and not related to this particular incident, but do these people expect me (as a person with a disability) to wrap myself in cotton wool and never stay up late on an evening to watch a TV show I enjoy or never to do anything I enjoy if it is going to put a strain on me physically? I'm sure they never stay up late or do anything that makes them a little worse for wear!

Anyway, luckily, as it turned out my boss, her boss, and her boss again up the food chain couldn't care less. They were of the opinion that what I do in my personal life is up to me. I think they were also of the same opinion as me, that the culprit is just a nosey trouble causer. My boss just said she felt she should mention it to me so I know what happened and so that "I can consider how it looks to others". Hopefully just the obligatory blurb they have to give, but you never know with my work! My response was one of disbelief at the pettiness of some people!

p.s. - I need a Dictaphone! I frequently have so many thoughts (and rants!) that are whizzing round in my head that would make great blog entries but the second I have a piece of paper or a keyboard in front of me they vanish!

I mean, what the hell has it got to do with work what I do and what hours I keep outside of work time?????!

I was off work all day today following from coming home early yeaterday.

I stayed in bed asleep until about half 2 this afternoon!

(Apart from work ringing me to ask me something and waking me up!) You would have thought me telling them that I am unable to fall to sleep and stay asleep would be enough for them NOT to disturb me. It took me an hour and a half to get back to sleep after the phone call. And the worst thing was, the guy who rang me was at no fault at all, poor guy was left hanging by my boss. She (my boss) was the only one who could answer his question anyway and she told him to ring me.

But anyway, I feel so much more rested, like a new person. AND I feel, for now, that I'll be able to sleep tonight. But we'll see...

In the last day or two as well as other incidents, I have had real trouble sleeping. I am SO tired that I am nearly falling asleep on my feet but when I go to bed or settle anywhere to sleep then restlessness kicks in along with aches, itches and fidgety legs.

I am just getting so frustrated by it all. Its not like I'm not tired.

I came home from work early today because I was going dizzy and felt shakey and tingly, all through exhaustion I think. Last night I can't have got more than 1 hours sleep.

When I got home I left to porch door open so the dogs could go out to the loo in the garden and went upstairs to change out of my work clothes. One of the dogs was on the bed and I laid down on the bed for just a moment to give her a hug and woke up half an hour later. I only woke up cos my hand had gone completely numb because I was laid on it! So I went downstairs, locked the porch door and went back up to bed. Could I sleep? NO! I lightely dozed in and out of sleep for about 2 hours and felt no more rested than before.

I have been for my fitting for an AFO (Ankle Foot Orthosis - Leg Brace) for my left leg (to match the one I already have for my right leg) and it went well. I am due back towards the end of the month to pick up the new AFO and also to adjust the one I already have as it digs in around the back of my ankle bone.

I think it may take time getting used to them full time. I find that my feet, ankles and legs ache from wearing them, I think it is from having my ankle joint held in such a fixed position for so long.

I have been referred for Physio, I thought for my hands to see if there was anything I could do in way of strengthening or maintaining strength in my hands. My gp sneaked a mention about my posture and back onto the referral letter as well so have now been given an excercise to stretch out my pec muscles as they are apparently pulling my shoulder forward into a hunched shape.

I am looking forward to more sessions with the physio, it went well and she really expressed an interest in my CMT and how to go about adapting excercises so I could do them (as the ones she showed me originally need to be done stood up and I just tipped over  ). I'll be very surprised if she hasn't gone away and read up on CMT in time for my next appointment.

... I haven't been feeling too good about my CMT in the last few weeks or so.  So I'm sorry I haven't posted to my blog recently. 

I am just struggling right now and I don't know why.  I just dont want to think about CMT or anything CMT is doing to me.  I hate that I can't get away from CMT as it effects everything I do and insists on reminding me how INcapable I am on a daily basis.  

Things happen which remind me how many people there are in the world who are worse off than me, including people close to me and yet I still struggle to "just get on with it" and deal with my CMT in the way many others seem to be able to do.

What is wrong with me?  Why does my CMT just ruin my life and make my very existence a constant reminder of my flaws.  Why can't I see my positives?  Maybe I don't have any positives.

I am so up and down all the time its not funny anymore.  I’m tired, so tired and I just don’t want to be tired anymore.  Sometimes I feel happy, chirpy and don’t have a care in the world, then I plummet again into the deep dispair I feel right now.  This feeling of “mood swings” can go up and down several times a day. 

Well, just a quick update on my GP visit I had on 27 February (see my last blog entry!).  She has written off for all the referrals I asked for so that is good.  So far I have had through my appointments for the podiatrist and for the orthotists so that is a good start .  She did say they appointments may take some time to come through.

My only concern is the letter I got with my podiatrist appointment. It said that they will "treat the problem" and the discharge with care advice.  It also said that they do not cut nails.  That is my whole reason for requesting the referral (regular upkeep on my feet and nails) as I can't do it myself.  I'm not entirely sure how I'll deal with it but I will deal with it. ;) 

I have got an appointment with my GP on Friday as I want to get some referrals sorted.  It is time to get on top of things. 

My AFO (ankle brace to help with foot drop) is driving me round the bend and I cannot use it.  It is uncomfortable and I was only fitted with 1, for my right foot.  I cannot walk with just the one on as it puts me off balance.  I was told at the time that I had to try the one and then come back for the other but I haven't even been able to try the right one out properly as I can't walk in just the one AFO.  I need a pair.  I had given up after being fobbed off on so many occasions. So the first referral I need is back to the Orthotics department.

The second referral I want / need is back to the Physio.  I went there for some time to try and get help and excercise advice for stretching out my achilles tendons and for helping improve my balance.  I was doing good with these exercises but have let them slip so I need to start doing these again.  This is not why I need to go back to physio though.  I can feel my hands getting weaker.  My general opening a jar type grip as well as my pincer type grip (like using a clothes peg for example) are getting weaker and I want some advice on excercises to strengthen them or at the very least try to maintain some strength in them for as long as possible.  I was fobbed off with this too. I was told that nothing could be done until it was too late, by then they would fit me with splints for my hands.  I am not happy to accept this as this view is down to ignorance and lack of experience of CMT!  It is not always the fault of the person giving the advice, it is often down to lack of understanding about how CMT works and differs to the many other conditions that they attempt to compare it to.

Thirdly, I need a referral to see someone about my back.  I have it massaged once a fortnight and this is a great help, however I am concerned that the niggling pain never quite goes away properly.  I often get shooting, stabbing pains which just don't feel right.  When I get these pains, by whole body just seems to spasm and gives way and I really don't think this is right. 

Fourthly I need a referral to a podiatrist for regular appointments to sort out the dry skin and nails on my feet as I can't cut them myself.

And finally, I am going to get a referral for a blood test to try and ascertain my "type".  My medical records say simply "CMT Type 1", so I'm hoping that it will at least be able to confirm or eliminate type 1a as a suspect. ;)

I don't think the poor doctor is going to know what hit her   Haha!

I am going to the GP next week to get a referral about my back.

It is knackered! The flare ups vary but each time it "goes" it is worse than the last time and I have had enough. I don't know what is wrong with it and I am going round the bend.

I just hope the GP can help. I got up this morning and stood up and got a shooting pain all up my back (up the sides and centre) and screamed, literally. My knees went from under me and I ended up in a heap on the floor. Then downstairs later in the morning before setting off for work it did it again at I barely clung to the mantlepiece to keep myself upright. But then I couldn't straighten my back and was just stuck stood with bent knees and leant forward from the waist. Dunno what happened. And it is only marginally better now. Driving the car to work was not fun. " title="Sad" />

Sorry guys for the long delay in posting on my blog.  Alot has been happening in my life and at home in the last month or so. I have reached a point now that I am beginning to turn my life around.

Going into too much detail over what has happened at home will not help matters but things are looking up now and I am at last looking forward to a more positive future.

Weight loss is the big aim for 2009 and I have started dieting already although excercise is difficult as I'm sure all you other CMTers out there can appreciate!  Any miracle tips welcome!  Seriously though, I hope to lose enough weight to get my self esteem back and I know when I achieve my goal I feel feel so much better physically and mentally.

Work is still the same and for now I am going to have to deal with it the best I can.  I cannot realistically reduce my hours and finances wouldn't allow.  This is still a work in progress as to what to do about this but at the moment I am actually feeling not too fatigued so I'll cross that bridge when I get to it.

Best wishes for 2009 to all other CMTers out there and to everyone else reading this as well. 

Sam

xxx

I am really struggling both physically and emotionally at the moment.

My Chronic Fatigue is the main culprit; I just have no energy to fight anymore.  I can feel myself sinking deeper in to the deep depression that I?ve spent the last few years slowly climbing out of.

I am emotionally and physically drained and have reached a point that I cannot be bothered to carry on.  I don?t see why I should have to have such a hard life.  It?s not fair.  Yes, I am feeling sorry for myself, that is what I am good at most of the time. 

I know that alot of my problem stems from a total lack of motivation.  I have given up, resigned myself that things will only get worse.  I want to be able to have energy to do at least some of the things I want to do.

    
I am really struggling with work.  I work 9 til 5, Monday to Friday and arrive home after driving half an hour or more to and from work.  My work is largely a desk job although I do have to walk round the office building during the course of my job role. This is not much at all though.  When I arrive home at around 5.45pm each day I am exhausted. I now often have to lie on my bed for half an hour, just resting and recharging my batteries. I could easily stay there longer but don't want to waste the evenings.
   
I feel my batteries are running out and I don't know what I will do.   We simply cannot afford for me to reduce my hours at all.  Yet working full time week in, week out is proving to be impossible now.

I am going to see Citizens Advice soon to see what my options are. 

Aside from this, I feel I am losing control over my own CMT.  I don?t know what is going to happen t me, and I know that is the same for all CMTers but I feel so alone.  I don?t have any family with CMT that I can relate to and I have all but given up on medical professionals who have just fobbed me off.

I am overweight and have no self-esteem because of it.  I comfort eat which of course makes matters worse.  I can?t shift the weight either, partly because I lack motivation, partly because I am too overweight to do any worthwhile exercise.

I am on a downward spiral and can feel my self-destructive urges getting stronger.  

I think perhaps that if I could get work issues sorted, this would allow me more energy to at least try to start fighting back . . . maybe.

I think it is a good thing to be reminded every now and then that there are many, many people who are worse off than me.  No doubt others try to cling on to this also.

Sometimes this fact can become forgotten.  Sometimes I need a reminder to stop me dwelling on my own misfortunes and put it all in perspective. 

Despite my biggest worry being my fear of the unknown, knowing that I will indeed deteriorate but not knowing how I am going to deteriorate over time ... I still need a reminder that my current state of health is alot better than others.

Today I had that reminder ... it was something very simple.  My elderly neighbours have two teenage grandchildren, twin girls.  They both were born with Cerebral Palsy.  One of the girls has always been wheelchair bound, the other has significant walking difficulties. 

And yet, both are such lovely, bubbly, well mannered and happy girls.  Neither let their conditions affect their day to day activities.  The wheelchair bound sister has even recently undertaken a long trek in Africa.

Everytime I see the girls it boosts my spirits.  So for a while again I can cling on to that fact, there are a lot of people worse off than me.

Just to let people know.  I have added some old blog entries from my old blog and they will show further down at their original dates.

Thanks guys.

Respect.

xxxxx

I know this may be an issue that many people who will read this will not be comfortable with but it is a subject which has effected me directly so I would like to discuss it.

Although I have reached a more settled phase in my life I did used to self harm and even to this day do think about it still and on occasions the urge returns.  I used to cut my inner thigh and the great feeling of release was the best feeling in the world.

I know many will find this hard to understand but all the tension, worry, stress, anxiety and all the other feelings which were crowding my mind were released by the pain and sensation.  I guess it was a very psychological thought process.

I am glad to say that I can talk about this experience in the past tense and can now look on it objectively.

This "action" list was sent to me recently so I just thought I'd add it here along with my "replies" ...

I have lived with CMT all my life, was diagnosed aged 5 and told about it by my folks age 16.  (In 1998). 

So I have had 10 years of "getting used to it".  My condition has deteriorated quite a bit in this time and I have dealt with it up to now.  For some reason and I'm not entirely sure why yet, I have appeared to hit a brick wall ... maybe I wasn't dealing with it as well as I thought I was?

STEP 1: Accept the Pain
Learn all you can about your physical condition. Understand that there may be no current cure and accept that you will need to deal with the fact of pain in your life.

I already have ... I am constantly trying to find ways of coping (AFOs etc etc ...) with very little medical assistance (ill informed consultants who are not experienced with CMT). 

STEP 2: Get Involved
Take an active role in your own recovery. Follow your doctor's advice and ask what you can do to move from a passive role into one of partnership in your own health care.

I don't HAVE doctors advice ... this is my whole issue  (see above)

STEP 3: Learn to Set Priorities
Look beyond your pain to the things that are important in your life. List the things that you would like to do. Setting priorities can help you find a starting point to lead you back into a more active life.

hmmmm ... I do this anyway (mostly)   

STEP 4: Set Realistic Goals
We all walk before we run. Set goals that are within your power to accomplish or break a larger goal down into manageable steps. And take time to enjoy your successes.

This IS a good tip but not always a realistic one ... things HAVE to be done

STEP 5: Know Your Basic Rights
We all have basic rights. Among these are the right to be treated with respect, to say no without guilt, to do less than humanly possible, to make mistakes, and to not need to justify your decisions, with words or pain.

Now THESE do apply to me, and are what I'm talking about.  I just can't say no!   

STEP 6: Recognize Emotions
Our bodies and minds are one. Emotions directly affect physical well being. By acknowledging and dealing with your feelings, you can reduce stress and decrease the pain you feel.

Another that DOES apply to me.

STEP 7: Learn to Relax
Pain increases in times of stress. Relaxation exercises are one way of reclaiming control of your body. Deep breathing, visualization, and other relaxation techniques can help you to better manage the pain you live with.

I never seem to have the time     ... when in reality I probably DO have the time, I am just too busy thinking all the time that I don't realise.    So good point.

STEP 8: Exercise
Most people with chronic pain fear exercise. But unused muscles feel more pain than toned flexible ones. With your doctor, identify a modest exercise program that you can do safely. As you build strength, your pain can decrease. You'll feel better about yourself, too.

See step 1 and 2!  I do what I know how.  I swim and I cycle sometimes which are both relatively not weight bearing on my ankles. I could do more though.

STEP 9: See the Total Picture
As you learn to set priorities, reach goals, assert your basic rights, deal with your feelings, relax, and regain control of your body, you will see that pain does not need to be the center of your life. You can choose to focus on your abilities, not your disabilities. You will grow stronger in your belief that you can live a normal life in spite of chronic pain.

This does happen to me, although intermittently. I know I need to focus more on the good no matter how hard it is to do so.  I have a loving partner, 2 great dogs which I adore   , a job (which is OK, could be better) and a roof over my head.  I do have these things to be thankful for at least.

STEP 10: Reach Out
It is estimated that one person in three suffers with some form of chronic pain. Once you have begun to find ways to manage your chronic pain problem, reach out and share what you know. Living with chronic pain is an ongoing learning experience. We all support and learn from each other.

I am currently undertaking a project to do just this (my new website) so good advice.  

To finish off, I just want to add ... I was brought up in a "just get on with it and forget about it" family (my dad is a GP, now retired!) and have therefore just "got on with it".  That, I think is part of the problem as now, when I deffinately can go no further unaided I can't get the help.