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Wednesday, 27 May 2009

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.

Friday, 22 May 2009

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.

Wednesday, 20 May 2009

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.

Tuesday, 19 May 2009

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.

Monday, 18 May 2009

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.

Tuesday, 12 May 2009

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.

Thursday, 7 May 2009

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!

Friday, 1 May 2009

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.