And here we go once more

I know that it has been a while since my last posting. Since then, I have been keeping a "personal mobility and health diary" and I can only recommend that you do the same. Record every detail, however insignificant it may seem at the time, at the close of each day. The findings may astound you and may even help to predict some of the oddities associated with this condition. This is best illustrated by example!

Since September 2009, I have made a note of, among many things, the frequency and severity of my headaches. You will need to make notes of the weather on each day, the food you ate and your activities. Try hard not to miss out on things, because every little item may have importance in your analysis. Think of the most blinding headache you have ever experienced and assign it a moderate value of 7. Then assign the recorded headaches values realative to this value. Correlate, after each month, all the data you have collected. Your best bet is to create a spreadsheet of some kind.

In the first column record the date. In the next column record the weather for that day. In the next column record the severity of the headache. The next column record should be the food you consumed and the fluids you ingested. You get the idea for subsequent columns. Once you have the data, you will be able to sort on it and manipulathe data to find correlations.

My personal findings showed that weather only has an effect when the change is more that 5 degrees celsius. Shellfish is a definite No-No and so is cream. Coffee works well to rehydrate and chocolate combined with ibuprofen will work miracles. I discovered much more, but none of it is truly scientific. It has no basis in science whatsoever.

After the first month of recording, I adopted some of the things I thought could help me. I was comfortable predicting, within reason, how I would feel and making minor adjustments which made life a little easier. I was able to manage my headaches more. It goes without saying that this is only one aspect of my recordings, but the others are to juicy for this blog ;-)

Here we go again

After a busy summer which included a holiday for good measure, things were on the up and up until that fateful day I decided to enjoy myself and found it compelling to push myself ... perhaps to far. The result of my over-enthusiasm was a stumble which resulted in some damage to my shoulder, which is still trying to heal but I feel the healing process is not really committed to performing its assigned task. However, shortly after his injury, I incurred another (mainly because subconsciously I probably felt that I had not injured myself enough and could do better if tried a little harder). This I achieved with a high degree of success by pushing myself down some stairs. The technique I employed was the "sudden absence of one leg required for walking down stairs"!

I joke about it now, but this is happening more frequently than I would like. In practice there is not much that can be done to prevent it from happening. Suddenly, or through a wanton act of gross complacency on my part, one finds that a normally reliable limb will refuse to perform its bio-mechanical function.

I have no solution to offer, except do not let complacency into your life, especially if you have MS. Complacency will injure you and can kill you.

Furthermore, as we (in the northern hemisphere) approach the winter months we will notice the seasonal changes in more marked ways than many other people. We have inadvertantly become living barometers, and will experience relapses and flare-ups of old damage.

To my fellow sufferers, please take care of yourself.

Results are in ... I win!

Once again, its been a while since my last blog but the reasons are good. Some posts ago, I spat feathers - no, I spat the whole chickens, to be sure - about the fact that Health and Safety was used as a means of circumventing the Disability Discrimination Act, in an attempt to re-evaluate my compatibility with current employment. Without waxing too much lyrical on this, I was livid. I was furious, mad and not going down without a fight. In fact, failure was not an option ... how dare this person even contemplate doing this.

I can now report back and claim victory. After some correspondence between this person and the specialists that look after me, I was given the all clear by a more senior member of staff and the verdict returned was "No further action to taken on Michael's disability". This is the result I hoped for because it would permit me to continue doing the job I enjoy doing.

So with all this being resolved a great deal of pressure was suddenly removed. Unfortunately, this is where a problem surfaced, a problem I experience all too often before but never in connection with my MS. I am a workaholic. "Yeah ... hello ... my name is Michael and I am a workaholic! At first I used to work harder once or twice a week, and I found I enjoyed it so much that soon I was working harder and smarter upto 5 times a week"!

I usually stay pretty healthy and "undiseased" while I work, but fall ill too all manner of illness during the first week of all my holidays. Thus, while the pressure and stress is piled on, I am fine and fit, but once it disappears ... I get ill and fall to pieces. Guess what? Once this issue was resolved, the stress was gone and I got ill. I really do love the curve-balls life throws at one.

After the latest illness/flu, I am once again back in circulation and ready, willing and more than able enough to give everyone a hard time. It's what I live for, and when the intended target fights back then I consider this the cherry on top.In this sense I abuse virtually eveeryone I know, but it performs a few vital functions. Firstly, good intelligent heckling pushes your mind and forces you to think faster and more creatively. Suddenly, you are firing neurons and using parts of the brain that may be fairly idle during normal daily activities. Heckling, with intelligence, awakens or reawakens these areas. Secondly, I use heckling as a means of measuring my mental abilities and agility. This allows me to identify any mental performance issues early on, and thus permits me to focus on them.

While I heckle, I can evaluate my speech and determine my response time. I know this is not nice towards my friends, but without knowing it, they are helping me to survive. The brain is certainly the most remarkable organ in our body. Use it, re-use it, and abuse it

Kindest regards

Things are looking up and up and away

Nonquantifiable (a quantum mechanics term) is the best way to describe my last two weeks. The highs have been awesome, helped in part by the smallest pill in my arsenal of medication. The lows have been few but I managed to hide them well, in my humble opinion. The last thing I want is sympathy etched on the face of every person I meet. Frankly, I find this somewhat irksome and off-putting. I believe my sense of humour and living for the moment allows me to tackle all things thrown at me with a certain je ne sais quoi. I would love to bottle this quality and give it to all my fellow sufferers, but ... alas ...this is simple not possible.

However, I can impart my techniques for dealing with people and this alone may guide you to finding your own way. My method is simple, almost child's play ... and yet ... it's effect is neither diminished nor fleeting. The plain and simple truth is that people do not know how to deal with you as a sufferer of MS. Why? Ignorance! Perhaps, but this may be unfair to them. "Why?" you may ask! Simply because MS is so different from one person to the next. This is where you come in! Your task is to educate the people you meet about your specific difficulties, and always do this with a wink in the eye and a smile on your face. If they see you coping with it in a particular way, then they will accept it and cope with it a likewise fashion.

Never hide the fact that you have MS. It is nothing to be embarrassed about and ashamed of. You have done nothing wrong, like perhaps peeing in your neighbour's garden, to get MS. Throw off all inhibitions sooner rather than later, because eventually you will have to as time progresses.

This is all easily done and, with a little practice, it becomes easier and easier but do not become overbearing and force it down each and every throat you come across. There is nothing worse than being bombarded by a relentless attack of MS information. Be dignified about it, in fact, a little dignity and decorum goes a long way to empowering yourself and enhancing your interaction with those you meet.

Finally, a sense of humour is a necessity. The more you laugh and have an edgy sense of humour, about yourself and everything around you, the more people will respect you and want to be around you. We have MS, so what! We can still be the life of the party. Find a groove that suits you and your temperament. In my case it was a quick wit, lateral thinking and the ability to heckle people and deliver all this with a cheeky grin on my face. I therefore, get away with much more than I possibly should, to be sure, I should probably be locked up if only to save society from me. I don't know of any other person aged 35 who could get away with calling a retiring ex-marine a "punk", and still building a professional and good relationship based on this. My point is that this is only possible if you are engaging enough and do with the right amount of respect and cheekiness.

The way you deal with the world around you DEFINES you, and whatever else you may have is incidental.

This is how I have handled myself even before I was diagnosed with MS, and it is still the way I deal with things now. MS has not slowed me down, in fact each and every flare-up or relapse increases my stubbornness to not let this demon take me. The last two weeks were fraught with numerous instances of speech incapacities, walking difficulties, aches and pains. Pills help, but the greatest pill is in your mind. Leverage the power of your mind and you will find hidden treasures and an awesome arsenal at your disposal. My recent adversity was almost overshadowed by the elation I am feeling at getting two kittens on Friday. I so longed to have a pet and now it's happening and the excitement is rushing through my body like a super-charged virus. Fewer pills but more endorphins, which were produced by ... you guessed it ... my mind and body, made all MS related issues seem inconsequential.

My fondest regards to all of you who read this blog. Thank you.

Mike

Stage 2 - Walking problems

Having hoped that my speech would be the only manifestation of the impending flare-up, I can now safely state that this is not the case. After a particularly heavy week, everything seems to have been placed on hold, but once the stress died away, I was hit by a collection of symptoms. I usually find that the first days of any holiday I take are pretty much given over to coping with all manner of flu's and sicknesses. I guess I am just lucky that way. It's not easy keeping all health issues at bay until I have time to fully enjoy them and make the most of them. I say that I get annoyed by this is perhaps a gross understatement, but I digress. I do find tangents somewhat fascinating and pursue them with alacrity.

Anyhow, back to the original narrative! These symptoms hit me with celerity on Friday evening. Any plans I had for the weekend had to shelved as the old issues reared their ugly heads, very much like a hydra. Walking became a painful exercise which I thought would be dealt with by a few Nurofens. I am becoming well acquainted with a plethora of pills, unfortunately they are quite temperamental and only appear to work occasionally, and never the occasions when I need them to work. Oops ... another tangent. The mind wanders happily and I let it.

After the nurofens, walking was still an issue, perhaps not as painful as before but 2 new symptoms surfaced to challenge me further, namely lack of balance and severe slurring of speech. If you had seen me in this condition, it would have been so easy to argue that I was drunk. The sad truth is that I had nothing to drink. Perhaps I am a cheap date!

I was unable to fall asleep, mostly because of the "pins and needles" all over my body and perhaps aggravated by both the pills and coffee. Yes ... I know that coffee is bad and will keep you awake, but I needed this fix. I was starting to strangle one of the light horsemen of the apocalypse due to the pains, discomfort and coffee deprivation. It was ugly, but I think Pestilence will make a complete recovery.

These flare-ups are, frankly, tedious. Today's bonus is a headache accompanied by its lifelong spouse, double-vision. Kindly, they left their children, nausea and neck-pain, at home wit a child minder. Thank goodness for small mercies. I will take this on the chin as usual, and try to make the most of it. Let us see what else my MS has in store, because if this is it, then it is not particularly ambitious.

Here we go again

I have lost count by now, but my speech is going all over the place again. The words seem to tumble out of my mouth in a rather haphazard manner. The added dimension, which I find strangely yet humorously intriguing, is the plethora of accents that these random words assume.

The day starts with a rather "over-the-top" almost embarrassing German accent. The W's are pronounced as V's and the other letters of the alphabet are subjected to a similar undignified torture.

As the day progresses my speech switches to a heavy Yiddish accent followed by a distinct American drawl. This change is not as severe as it sounds. It's the lunchtime antipodean accent that causes the most trouble. Why? Because this is the time that most people try to contact me by phone, and it is they who think I am poking fun at them! Normally, this would not be an issue, in fact, I usually enjoy poking fun at everyone given half a chance, but my antipodean accent is so heavy and ludicrously bad, that the mere sound of it offends most people. Compared to me, Crocodile Dundee speaks the Queens English.

By mid-afternoon I have still not exhausted my repertoire of accents and I proceed to inflict on anyone who cares to listen, a lilting Irish accent. This accent I find deeply embarrassing because, quite clearly, I am not Irish.

On particularly good days I may even subject my audience to a really bad French and/or Italian accent. With such a bewildering array of accents at my disposal, I may get into serious trouble.

I have therefore decided that should I need to say anything, then I will need to say in Latin. I may offend my fellow Classicists, but they are few and far between and thus easy to avoid unlike all the other population groups mentioned above.

By the way, this piece was written in an Oxford accent! Hopefully I will wake up tomorrow morning sporting an Italian accent and thus make myself a decent cup of coffee.

Sincerest Apologies

I do apologize most sincerely for not posting anything for a while. Due to an increased workload and various committments, and the fact that I mislaid my soap box, posting has been somewhat less frequent. This was compounded by the fact that nothing serious had happened since the last posting, except for the rather "happy but devil-may-care" attitude I have had towards everything of late. I suppose I could blame the new drug that I am on, however, this may be unfair.

I did read the volume of side-effects that this drug may or may not have. What really annoys me is that all the side-effects are listed as "may or may not", thus "you may or may not experience weight gain" which is immediately followed by "you may or may not experience weight loss". Does anybody else think this is as ridiculous as it sounds? Frankly, this leaves you with no options either way. In the same volume the following appears, "you may or may not experience an increase in appetite, you may or may not experience a loss in appetite, you....". For this reason alone, I cvall it a side-effects volume. It "talks" much but "says" very little.

It must be said that I have experienced a substantial improvement since taking this drug, and it is also "soft-core" as opposed to the more "hard-core" Amytrypteline.

I will keep you updated on this. Promise!

Thank you

In the first instance, I want to thank everyone for their support with regard to my previous posting. I genuinely appreciate this support.

In the second instance, I have had the clinic appointment I spoke of a few weeks ago and discovered that the strange sensations of hot and cold and not being able to tell the difference at times, was not something unique to myself nor was it only in my head. It appears that these sensations are share by many MS sufferers, which is a mixed blessing. The problem here is that nothing can be done about it as yet. Who knows what the future holds, perhaps hormone treatment or surgically implanting a thermometer. In a weird manner, I am looking forward to seeing the solution to this quandary ... and yes I am marginally warped in my outlook on life, but fascinated by such things.

Some of the other symptoms such as the increased pins and needles, the brain pain and the occasional jerk (the reflex and not the person) can be tamed through the use of various drugs. I was prescribed one of these and after a few days I can report that the effects of this beauty can cause vanilla to fly abroad to mascara where the top speed is a barmy 35 degrees Celsius and the dessert is sprinkled with bits of a belt sander usually turned and angle of 45 degrees every 2 years to prevent an increase in pension contributions.

So ... it the previous sentence has warped your mind, then good .... because this is what it feels like to be on these drugs. But I have found out the reason for this ... namely ... wait for it ... everything is out of sync and the way to bring everything, sharply, together again is by consumption of vast quantities of strong coffee followed by a red bull chaser. Once you have picked yourself up off the floor you will find yourself in a Nirvana. Suddenly your mind takes control of the random thoughts and quickly files them where they ought to be and everything makes sense again. I believe the caffeine overload helps, unfortunately it does not last.

These drugs do complicate the world a little, and can cause blips in concentration which result in numerous lost trains of thought. So be careful and be aware of this. But most importantly, these drugs do help. Some of these drugs are usually prescribed to alleviate depression, however, as a smaller dose they prove to have other benefits with perhaps only a hint antidepressant.

One definite benefit I discovered was a dramatic improvement in the quality and quantity of my heckling. To the mind and soul, this can only be good for me.

As always, take care and strengthen your mind.

Health and Safety versus Disability Discrimination

I have Multiple Sclerosis and, as such, my conditions varies day by day. Most people are aware of this and adjust accordingly. The nature of my job necessitates working away from my desk at times, for which I am unrepentantly thankful, and on occasion may require me to ascend a ladder or transport moderately heavy items. In this instance moderately heavy may justly be defined as anything slightly heavier than a laptop and and slightly lighter than 2 laptops. I find the laptop scale a useful means for measuring weight, however, I fear that I may be in the minority on this one.

During periods when my MS does not impede my mobility, this is not an issue and I happily continue with my work (with a song in my heart and a whistle upon my lips), however, when my mobility is questionable then I do require assistance. Being an adult and capable of making quantifiable risk assessments, I would not perform tasks I was unable to perform. This decision has been taken away from me, in the first instance, and I have been forbidden to use ladders (even though I have had the required ladder training within the last year), in the second instance, and furthermore, I am unable to perform my duties based on someone else’s opinion.

It has thus been argued that I require an assistant in order to complete my duties, which is a falsehood, and that the cost of such an assistant would not be feasible for my employer. Thus, it is argued, as I pose a serious and unacceptable risk in the fulfilment of my duties, under the Health & Safety guidelines, it would be in everyone’s best interest to assist me in finding employment elsewhere. In other words, "we don't like your kind around these parts!".

Hence, my disability (and not my amply proven ability to perform the work) is being used to highlight the risks posed by me on the employer under the H&S Act. Clearly, my employer is treading on dangerous territory here, and what's worse is that they have annoyed me. If their intention is discover what they can do to prevent exacerbating my condition, then just say so. However, the way that they chose to deal with this is exacerbating my condition. These silly letters and opinions exacerbate my condition. Decisions about me, and my future, without involving me, exacerbate my condition. All these exacerbate my condition. I wish they would just let me get on with doing what I am brilliant at, namely my job!

The point about this post is to warn any disabled people about a looming menace,with ferocious teeth, a bad haircut and crossed eyes. Health and Safety is a must. Compliance with the Disability Discrimination Act is a must. The DDA will protect you from virtually all unfairness, but H&S will be your Achilles Heel. Unscrupulous employers seeking to shed staff may resort to H&S to circumvent the DDA. Be careful! Here are some very useful links.

http://www.opsi.gov.uk/acts/acts1995/ukpga_19950050_en_1
http://www.opsi.gov.uk/acts/acts2005/ukpga_20050013_en_1
http://www.direct.gov.uk/en/DisabledPeople/RightsAndObligations/DisabilityRights/DG_4001068
http://www.healthandsafety.co.uk/hsw.htm
http://www.hse.gov.uk/legislation/hswa.htm

Not all pain!

Not all Multiple Sclerosis symptoms are accompanied by aches and pains, in fact, most of them are not. Most symptoms are, however, accompanied by some degree of discomfort and/or awkwardness. Most symptoms are of the type "Oh ... um... that's strange!Is it supposed to do that or feel like that?!" The signals get garbled, and then things do the unexpected.

I have stated the MS is an adventure, however, it is not always a pleasant one. Focusing on the negatives would be all too easy, but this is true of virtually all disabilities or illnesses. This way madness lies, and so too the path towards depression. Depression is destructive and can be treated. MS sufferers should speak to their doctors about depression an soon as possible and try to establish whether they suffer from it. It requires the sufferer to be very honest with him/herself, and seek treatment if they are diagnosed with depression. This diagnosis must be done by a professional of the medical society.

I have spotted from numerous forums and news groups that a variety of medical, non-medical and illegal drugs are used within the global MS community. These are used to assist with anything from sleep disorders to bladder control. The variety is absolutely staggering, but not one mention was made of Viagra. From personal experience, I can understand why but it is also very reassuring or should be for males in general.

Most importantly, fight depression. It affects you and those you love or love you. Its dangerous and destroys anything in its path, indiscriminately.

Midnight Discomfort

So ... There I was! Lying on my bed, covered by my favourite blanket, blissfully waiting to be engulfed by the sweet embrace of delicious sleep. My body started relaxing, and SUDDENLY it started! A familiar and uncomfortable sensation. It usually starts in the feet, slowly and deliberately moving towards the shin, then steadily crawling towards my chest. Surely this has to be some kind of bug or creature that found its way under my blanket ... so my next move is to leap out of bed - with much caution because the first time I did this I almost killed myself-, fling back the blanket and proceed to finding the intruder. However, as so often before, nothing can be found. There is no bug. No bedbug, no flea!

The midnight discomfort feels like 1000 ants decided to go on a midnight march, using my body as an obstacle course. It is not painful at all, but it is ticklish and itchy. It is tortuous and prevents me from sleeping. I have tried blocking it out, but failed dismally. Having another shower does not help either. The only thing I have not tried is sleeping with a sackcloth blanket.

Any suggestions on dealing with this will be most welcome.

Powers of Observation

I am always stumped by the incredible display of some remarkable powers of observation by people who know me, and are aware that I have Multiple Sclerosis. I have often been "challenged" by some remark such as "Are you having trouble walking today?" after clearly seeing that such is the case as I was approaching them. One response from me was "No ... not really! I am trying out my new cool walk. Do you think it looks OK?"

I am not bitter about anything, even though my responses may portray me otherwise, but I do get annoyed and I love delivering response such as the one above. My philosophy has always been "accept and educate, be harsh in delivery but not in demeanor!". The delivery of the above response, or similar ones, should always be accompanied by both a smile and a mischievous twinkle in the eye. Of course, if you have or had Optic Neuritis, then this twinkle is already permanently there. All jokes aside, I try never to be offish or aggressive. Firstly, it is unnecessary; and secondly, it is highly unattractive. The comments should have enough of a sting to tell people that such comments are not appreciated, especially after hearing it from virtually everyone you met that day already. The responses should also not be too harsh, because you could find yourself not only alone but also lonely.

Hone your skills on siblings and family members, before assaulting the public with your verbal venom.

Clinic Visit

Firstly, I would like to apologize for not posting sooner, however, family commitments had to come first.

As my next clinic appointment rapidly charges towards me, I dread sitting in the consultation room. I consider myself extremely fearless, and I have absolutely no issues with blood nor do I have issues with needles. In fact, I watch intently as they plunge a sharpened pipe into my arm and claim that all I will feel is a tiny scratch. Whom are they kidding? A scratch! I do not have doctor-or-nurse-friendly veins; in fact, it dramatically highlights the experience, or inexperience as is often the case, of the vampire drawing the blood from my body ... perhaps this is somewhat dramatic, but the point I am trying to make is that drawing blood is an art and a skill which many practitioners have not mastered. I consider my self lucky in that I know of 3 people, out of the plethora of vampires, who have the unique ability to withdraw blood while meticulously avoiding each and every pain receptor. Unfortunately, these three are not always available, and when this is the case then I do dread having blood taken.

As I have already mentioned, my veins are rather shy and therefore require one of two things, namely experience or innovation. In the absence of both, I have found myself at the mercy of someone with a sharpened implement who decided to insert said implement "in the vicinity" of a vein, and then failing to find this vein proceeds to wiggle this sharpened implement in my body in an attempt to separate the meat from the bone. With any luck this does not happen and they eventually find a suitable amount of blood and stop. The result of such activity is an arm that hurts and a bruise about the size of a compact disc.

Where experience is found wanting, innovation is required in finding suitable veins for "milking". One nurse was particularly noteworthy for this. On a day when my veins were particularly reclusive, she decided to simulate taking my blood pressure - without actually measuring the pressure - which caused my reclusive vein to become more lively and pronounced, whereupon she inserted the torture device into the proper place without inflicting pain. Should you find yourself in a similar venous predicament, then remember this trick and suggest it to the perpetrator.

Unfortunately, some veins deliver blood in greater flows than others. "All veins are equal, but some veins are more equal than others!" Thus the blood obtained from a weak vein is as good as that obtained from a good vein, however, it will take longer to fill the vile vial if a weaker vein is used.

This, neatly, brings me to the next point. This particular clinic has the habit of withdrawing blood by filling numerous vials. The sight of roughly 2 dozen vials that must be filled is enough to make anyone question the motive of the person withdrawing the blood. In total, this amounts to less than the pint withdrawn from blood donors, with one caveat. When blood is donated, the flow of the withdrawal is reduced thereby causing a minimum upset to the system, whereas the blood flow is totally uncontrolled and rapid during my clinic appointment. This is perhaps an exaggeration, but there are very definite differences in the approach.

Occasionally, a visit to the physiotherapist for a physical evaluation is required. The physiotherapist will subject you to numerous tests based on sight, sensations, balance and reflexes. They are useful if you pay attention, because here you can determine for yourself whether new problems have developed or old ones have resurfaced or been aggravated. This is equivalent to having a "road worthy" test being done on you if you were a car. I particularly loathe these tests because they inevitably discover some malfunction that did not exist the day before, or they discover that an old malfunction is no longer present, and presume that it has been corrected, whereas the truth of the matter is that this particular malfunction decided not to rear its ugly head on the very day that I am supposed to see the physiotherapist.

This, unfortunately, is the nature of MS. It is unreliable! Things can change dramatically from one day to the next and moreover, to observers, these dramatic fluctuations in your health and abilities may appear as an act. The uniqueness and peculiarity of the symptoms and manifestations of MS, from one individual to the next, certainly adds justification to such perceptions and makes the task of convincing the observers that much harder.

I hope this helps everyone who has to deal with the monthly and/or weekly draining of blood. Keep a positive attitude about this. Furthermore, these nurses and doctors are trying to help us and everyone has to start somewhere to gain the required experience. Think of it as a community service, whereby you are enabling a novice to gain the required experience to make it easier for other patients to have their blood withdrawn.

Something new

Seldom am I surprised by my Multiple Sclerosis, however, recently I encountered something new. Thrilling is quite possibly the wrong word to use, but being able to experience a new sensation does have its benefits. The principle reasons for this is twofold: Firstly, it implies that some part of your anatomy - which had functioned normally - has now ceased to do so and may inject some more excitement and challenges into your life, not that this added inconvenience is particularly desirable. Secondly, it keeps you on your toes because the worst thing that you could possibly become is complacent about the aches, pains and inconsistencies of your body. Be vigilant!

What I had experienced was strange. I shower as often as possible, and usually the temperature I set for the shower is "particularly warm indeed" as opposed to "hot" or "just add seasoning". I enjoy my showers ... absolutely ... and I was doing OK ... until I placed my hands under the fall of water. While the remainder of my body was luxuriating in the warm embrace of falling water, my hands felt as though I had recklessly immersed them into a kettle of boiling water.

I have mentioned, in a previous post, my periodic inability to determine changes in temperature; however, in this instance I had experienced an extreme in only my hands, whereas the remainder of my body sent continuous reports to my brain that everything was just fine. I therefore proceeded to confirm that I had set the shower at the correct temperature, thinking that perhaps I had set it too high and may require some plastic surgery, but ... everything was set correctly. So, as I had never experienced this before, I now classify this as a relapse and not a flare-up.

This incident clearly highlights what many MS sufferers experience, namely, that the nerves function but not reliably. The signals your brain receives are either muffled or heightened, and this could change from one to the other in a very short timespan. Making judgement calls on either your body or your environment, based on such unreliable information, is difficult and potentially dangerous. This is MS trying to get the better of you. Don't let it! If Ms tries to throw such challenges at you, accept them and appreciate them. These instances allow you to learn more about your body and how it functions.

Remember this: you may have MS, but do not let IT have YOU!

I am not stupid. I have MS.

The effects of MS are many and varied, in fact, as individual as people are ... so too are the symptoms and manifestations of MS. I doubt whether any 2 MS sufferers have identical aches, pains, symptoms or relapses. This is not really that difficult to understand, since we all have a similar biology but, and this is the crucial point, we do not have the identical biology. Allow me to elaborate a little on this.

We all have different abilities and endurances, flexibilities and limitations. If we did not have these then we would all look, speak, move and think like each other. Frankly, I love my individuality. But one has to take the good with the bad, and on occasion my particular MS symtoms do affect my speech and hearing. It took me a while to discover the hearing problem, especially as we are nowadays so surrounded by sound, but once I had determined that there clearly was an issue with my hearing, it seems to behave more erratic than any other symptom.

The problem with hearingis manifold. In the first instance, you need to separate genuione sound from noise. I often find that this is easily accomplished by blocking out human speech, most of which is noise without form or content. This is futher aggravated by a tendency for many people to mumble their way through life while expecting you to interpret the mumble and refashoin it into something intelligible for their sake. I now refuse to do this! But my refusal has had some knock-on effects. Due to my lack of response, and my response on occasion not pertaining to the conversation, I am now considered to be stupid.

Generally, people will not say this to your face ... instead, they will slow down their speech and accompany this with elaborate gestures. The strange thing, though, is still the presence of relentless nonsensical noise emanating from the lower half of their faces, and still does not assist in any form of understanding.

One a biological level, I know I am not going deaf, simply because I have good days and bad days. Although I am male and therefore biologically inclined towards selective hearing, it is still not intentional selective hearing. What happens is this:
Sound enters your ear after being guided there by the lettuce-like outgrowths on the side of the head. This sound is then picked up by the tympanic membrane and the bones of the ear. Finally it is converted into an electrical impulse that is transmittedd along nerves to your brain, where it is analysed, processed and (if you are male) discarded or (if you are female) filed. Obviously the whole process it much more complex, but the point is that it involves impulses being transmitted along a nerve that may resemble a dirt track as opposed to a freshly laid motorway. Hence the hearing difficulty.

Thus in conclusion, a hearing difficulty may lead to an impression being formed that you are somewhat less than able to use your mental faculties.

It must be said that being regarded as stupid has had some rather funny paybacks, and I am now inclined to explore this avenue more in depth.

I am not on the drink.

Occasionally, MS strikes in such a way that walking and talking becomes difficult and strange. To the "uninitiated" it appears as though you are drunk. Your walking may become unbalanced and lead to frequent close encounters of the painful kind with the pavement or strategically placed objects that were designed to inflict the maximum amount of damage with the minimum amount of effort. My particular forte is the stealthy corners of tables,but I have been known to be attacked by the unobtrusive yet highly effective doorway.This balancing problem is particularly aggravated when you are suffering from a cold or flu. Because one of the manifestations of MS is slurred speech, trying to convince people that you have MS can prove somewhat tiresome and futile. Unfortunately, for this reason alone, it is important to tell family and employers that this is not the case. Your best bet is to educate them and do it quickly. It is part of the human condition to judge before knowing all the facts.

Think happy thoughts, and keep that MS misfit at bay.

Needles and pins

You know the feeling, but not on this scale. This is perhaps one of the most common side effects of MS which most sufferers will experience most of the time and mention more often than anything else. Why is this? Simply put, everyone has at one time or another experienced this sensation, and it is easy to replicate. If you wish to do this then all you need to do is to sit on one leg, foot under your backside, on a sofa. Don't change your position in any way for approximately 45 minutes. After this period, without moving your body, determine whether there is any sensation in the foot you are sitting on. If you can still feel your hand touching your foot, then continue sitting for another 45 minutes ... remember to forgo any type of movement of any kind.

Now ... get up quickly from your seated position and walk briskly towards to kitchen to make yourself a cup of coffee. If you have done this correctly, then you would have experienced the following. Once you had decided to move your leg, it would have felt heavy, awkward and, in some way, not part of your body. Once you attempted standing on it, it would have been weak and possibly buckled under your weight. It would also be accompanied by a sharp pain. Finally, on your road trip towards the kitchen for your coffee, you would have experienced a distinct weakness in that leg and a shooting pain with each step you took. After about 2 minutes the harshness would have calmed down a little to the more familiar pins and needles that everyone experiences. Viola ... welcome to our world. This is only a taster of what we experience and this is the reason why most MS sufferers walk in a variety of strange and awkward ways. We would rather be walking in normal ways like most people do, but it is not always possible.

This experiment was conducted on only one of your legs. Now try it with both, and you will then get the full experience, but be warned with both legs in this state you may fall flat on your face while trying to get up from the seated position. If the pins and needles were only limited to the legs, it would be blessing, however, this is not the case. Virtually any part of your body that has nerves will experience this sensation. Furthermore, from a purely male perspective, believe me when I say that there are some parts of your body where this sensation is perhaps more weird than it is painful. I doubt that this needs elaboration.

Due to way that your body is wired, it is possible for the pins and needles to affect either the upper half or the lower half of your body, or the left side or the right side. Thus paraesthesia (the official name for pins and needles) can be and often is "hemi" in its effects.

Those strange little aches and pains

Having MS is, in all honesty, an adventure. This may sound strange at first, however, and it probably depends on your particular frame of mind, but each day brings with it both new challenges and new experiences.

For example, a any person grows older the sudden appearance of little aches and pains is perhaps anticipated by most people. We often see the elderly bent double with aches and pains and then accompany this sight by giving you a run down of various organ failures and the onset of age related diseases. I am not ridiculing the elderly, do not misunderstand me, I am merely pointing out what most of us have experienced at some point in our life. However, when a person in their thirties, suffering from MS, suddenly complains about similar things, it is seldom regarded in the same matter-of-fact way. Usually, people fall into one of two groups, namely the sympathetic and the incredulous.

But these little aches and pains are as annoying as they are cumbersome. Painkillers can be used, but it does not always help. Besides, if you are like me, then you do not take many pills, and thus feel the burn. The pains I suffer from most on an almost daily basis are "my brain pains" which are more than headaches. These are short sharp stabbing pains in my head, and I would prefer a headache to these anytime. The other pains are "my deep bone pains" which usually occur in the limbs. They are hard to describe but the best I can do is to say that it feels like the surface of the bone in my limb is being crushed very slowly. Yep, I knew it ... now you think I am weird, but this is what it feels like. The pain is deep beneath the muscle and no matter how you stretch or twist your limb, it does not go away. No! It does not resemble the pains you experience after a heavy workout at the gym, which are normally muscular pains. These are much deeper than those.

Personally, I always feel the need to stretch or twist the limb in order to alleviate the discomfort. Today is one of the days that I am feeling such a pain ... only this time the pain is in my feet. It feels like walking on sharp stones with bare feet, which would be a silly thing to do in the best of health ... and I suppose there is some curious custom somewhere in the world where this activity would be admired and rewarded ... but moving swiftly on ... it rather clashes with my fetching and suave manner of almost knuckle-walking wherever I go.

I believe that I can deal with virtually everything that MS can throw at me, but these pains are disturbing my sleep ... and this I cannot ... no ... will not ... tolerate. I think it is time to invest in a soap box and a bullhorn!

After the relapse

After enjoying the Easter festivities, it is once again time to report back on any progress. When I last posted on this blog, I was recovering after a mild relapse. Mild is a relative term that is possible the more subjective than most MS sufferers will ever acknowledge. The Doctors have no scale to use, and neither does the patient. A lot of it depends on your frame of mind during and after the relapse.

However, I had not perceived any permanent damage in the first three days after my recovery. At least, nothing that would worry me. Since the recovery process takes a while, my first inclination may have been somewhat premature. As I had mentioned before, each relapse does leave some damage as a calling card. This damage may not be visible, but more often than not, I believe this is not the case. My recent relapse has definitely left the left side of my body a little worse off than it was prior to the relapse. Mostly the effect is a weakening of that side of the body, which is visible as loss of muscle tone. Fortunately, for the public in general, I am not inclined towards exposing my body by recklessly ripping off my clothes in public.

There is a very good reason for this. The relapses are not confined to only one side of the body. These relapses can affect any side of the body at any time. After a few relapses on each side of the body, things are not quite .... shall we say, aesthetically pleasing to the eye. When muscle tone is reduced, you become very acutely aware of gravity. So loss of muscle tone = bits heading south. Being male, and not wishing to speak on how this affects the ladies, I shall confine my observations to purely the male side of things. Any person of the opposite gender is welcome to contribute from their perspective, and please do because I am intrigued!

The first visible body part heading south on males would the the pectoral muscles. But this is OK, ... I think we can handle this as a gender without loosing too much sleep about it. It bites, but its acceptable. The Glutæus Maximus, i.e. the muscle that is also known at the butt, also appears to have a southward inclination as do all muscles the body, in fact. But most distressing is the southward tendency of the "crown jewels". Under normal circumstances, when the crown jewels start the slow migration to the south, this is a joyous event marked by the owner entering into manhood. The continuation of this southward trend is usually a natural one which does not illicit any more attention after entering manhood. It is generally considered that at some point this southward trend shall cease. My particular worry is that this move towards the south is accelerated after each relapse.

As yet my voice has gotten deeper, but I would like to believe that this is a normal natural phenomenon. My worry is that in 10 years time I will be forced to look in the mirror and discover that I am the proud owner of something that resembles a pair of long socks, each with a single plum in it, fighting for dominance with my knees. I hope you understand my concerns, especially when it would appear that plastic surgery is the only dignified option to rectify such an unfortunate situation. All other options are simply not acceptable, especially the equivalent of a bra for those bits.

Perhaps I worry too much, however, these are things that concern me. On the brighter side though, I have had a brainstorm. I am investigating the feasibility of having Orange County Choppers manufacture a customized motability scooter. My idea is to have two choppers made into one, in a similar fashion to a catamaran.

My fondest regards to all of you, and thank you for reading this blog.

A Multiple Sclerosis Treatment

As Featured On EzineArticles

Fancy a metallic taste and zero immunity, then this may be for you, but read further before deciding.

The Beta Interferon did not seem to be working. I say seem because it may have diminished the ferocity of the relapses I was experiencing, however, there was no way of being certain of this. One thing was clear ... I was still having relapses and occasionally speaking as though my mouth decided to fall asleep without informing the brain of its intention to do so.

It was decided that I should be given an experimental drug that appeared to have its uses for Multiple Sclerosis. After being told about the various risks I was going to run, I decided to proceed. The drug was called Campath 1H, and it had been used as a treatment for cancer sufferers. It was one of Campath 1
H's party tricks that proved most useful to sufferers of MS, namely the ability to destroy a subset of your immune system. Yes, this does sound drastic, however, a biology lesson is needed here.

Importantly, MS is not a disease! MS is a programming mistake. Your immune system is designed to ward off all forms of nasties that may wish to harm you. This protection is normally welcome, and tragic when it ceases to function (as in AIDS). With MS, the immune system has been engaged into the highest gear possible. So what this means is that not only will it attack all the nasties, but it will attack anything it perceives to be a nasty. In the case of MS, the perceived threat is the protein that forms a protective sheath around some of the nerves in your body. The sheath is usually called the myelin sheath, and it acts as an insulator to ensure that the electrical impulse traveling along the nerve reaches its destination. So ... remove the myelin and you diminish, if not remove, the function and effectiveness of the nerve. When these nerves cease to function in the usual manner, the sufferer will experience a flare-up or relapse. The mission Campath has is to destroy that part of the immune system responsible for this damage. Once this has been achieved, your body will naturally start building up your immune system, hopefully with a fresh set of instructions that do not include attacking your myelin. In this capacity, Campath is called an "immune modifying drug", however, Campath cannot repair the damage done to your myelin and thus can only hope to stop your MS in its tracks.

The way Campath was administered to me was as a daily intravenous drip. However, before the Campath IV drip was administered, a daily steroid IV drip was administered to "temper" the effects of the daily CampathIV drip. This is where you experience the euphoria of a disgusting metallic taste that sets up residence in your mouth, and refuses to vacate for around 2 weeks. Other than the taste, you experience nothing else while you are on the steroid drip. The very first Campath drip is another matter entirely. At first you feel a little fatigued and colder. After 4.5 hours, you are shaking vigourously to stay warm and to say that you are feeling unwell would be as understated as saying "the surface of the sun is a bit warm". At this point you are in real danger, and the nurses know this and prepare for it. The cold you experience is due to an incredible rise in your core body temperature. This is not only dangerous, but if left unattended ... fatal. The solution is to wrap you up in ice cold towels, while you are feeling cold already, and therefore bring down your core temperature. Unpleasant! You have no idea!

The same routine is performed for another 4 days. However, as the first treatment dessimated approximately 80% of your immune system, the effects of subsequent treatments during the following 4 days is hardly worth talking about. During these four days, a host of aches and pains appear, but paracetamol or ibuprofen can deal with these.

On the day that you are discharged, you are given the do's and dont's that you will have to adhere to if you wish to stay alive. Your diet wil take the biggest knock. Any food containing any kind of culture, i.e. soft cheese or yoghurt, and food that has not been cooked, i.e. by placing in a suitable lead-lined dish in the middle of the nearest nuclear bomb testing facility, should be avoided. The list goes on and on, and then starts addressing your social life by forcing solitary confinement for about 3 weeks. The reason they give you is that you have, at that point "an immunity to nothing ... and everything else should be avoided".

The important thing to mention here is that in my personal experience ... CAMPATH really did make a vast difference. I occasionally still have flare-ups and relapses, but I can deal with these ones ... and I have not had anything like the dibilitating hemiplegia that I experienced a few yers ago, which left me with about 90% of my prior muscle tone and abilities.

CAMPATH is the name I know this drug as, however, it was recently renamed as "Alemtuzumab" for whatever reason. If you click on the following link, you will be able to read more about it.
http://news.bbc.co.uk/1/hi/health/7680641.stm
What I have mentioned here is my personal experience with this treatment, and to give any sufferers who have not heard of it, an opportunity to decide whether they wish to try it or not.