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!

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.

Relief and anger

After 6 days since the beginning of the latest event/episode, there is finally relief at the realization that things are returning to normal. All systems are functioning as expected and no permanent damage is evident ... yet! Sometimes damage only becomes evident after two or three weeks, and usually takes the form of an inability to perform some mundane action that was easily performed before and is now no longer possible.

This latest episode affected my legs and feet in the first instance. I then felt the left side of my face starting to slide southwards, trying to drag the right side of my face with it. Looking into a mirror did not reveal much, except for a slight loss of muscle tone and perhaps a marginal delay in the response to any stimulus. The frightening aspect of this all, is that it so closely mirrored a stroke in the first signs, things like slurred speech (or the inability to correctly form words), the smile being less obvious on the affected side and weakness on one side of the body. Unlike a stroke, the weakness I experienced was in both of my legs, my right arm and the left side of my face. Having experienced similar symptoms before and not diagnosed as having experienced a stroke, you may well think that I experienced a Transient Ischaemic Attack (TIA), however, this did not happen to me. I guess I was just born lucky. But, very importantly, if you experience this, then you MUST seek immediate medical attention ... immediate ... not tomorrow or next week, but immediate. Let a diagnosis tell you whether you experienced a stroke or not. Just because you have MS, it does not necessarily follow that you will be immune to, or spared, anything else.

Another rather more annoying side effect is the social aspect of such an episode as I experienced. I frequently have difficulty with mobility, but that hardly seems to slow me down. I am possible one of the most obstinate people you may ever have the misfortune to meet. But I digress, as usual! These mobility issues do not go unnoticed, much to my annoyance, with many kind and gentle people worrying and offering assistance. I always graciously decline and thank them for their concern, however, some who cannot be classed in the same league take this as a sign of weakness or a reason to institute change. I am currently experiencing one of the latter processes. As a disabled person, the first thing you must do is get your back up and put on the meanest face you can possibly manage. In my present situation, my "compatibility with current employment" is the focus, and the way that this is being addressed is by attempting to get me to agree to my employers contacting my doctors. In all fairness, this may be legitimate in many cases ... but not mine. I use my mind more than anything else ... and there is nothing wrong with my mind. I may occasionally experience difficulty in walking and talking, but I never have any difficulty thinking and analyzing. Furthermore, and this is very important, any such compatibility must be assessed using your written job description as found on your contract, and not based on both the job description and the extra activities that you may have taken on. It is natural, for example, to use a ladder to perform a simple task such as putting a book on the top shelf. Activities that you would not think twice about. But, as this may not be in your job description, it cannot be used against you.

If there is nothing else that you find useful in this blog, then at least make a note of the following. Know your rights as a disabled person, and SEEK legal advice. Do not sign ANYTHING until you have sought legal advice and know all the facts and repercussions. The Disability Discrimination Act (DDA) is your best friend and will help you, but it cannot help you if you have signed something away. Any person who wants access to your medical records, or any of your other records, must have your consent in order to do so. But furthermore, it is your right to demand an answer, in writing, the reason for this request and the use to which this information will be put or the intention for such a request. Finally, it is also your right to refuse to give consent, however, it is likely that if you do refuse to do this then the employer may claim that "the inability to obtain up-to-date medical information may affect decisions about your future employment with the...". Thus placing you in an almost impossible position. Roll in the DDA, Disability resource centre and a legal advisor on employment.

Do not be bullied!

No improvement

Since my last post, things have not improved. My ability to walk is still subject to the whims of misfiring nerves, and limited to approximately 30 feet before pain wins and I am forced to stop. Balance is also affected and there is still no sensation in my legs.

The strange thing about MS is that relapses or flare-ups happen quite suddenly, even when you recognize the triggers, and can disappear equally speedily. The damage to nerves is, as yet, not reversible and thus will always leave some residual aftereffects during the post-relapse or post-flareup recovery phase. However, no nerves act in isolation, they are merely the pathways for impulses to travel between points on and in your body. The troubles that most MS sufferers experience after relapses or flareups are usually due to these nerves not functioning as they should, however, on some occasions this damage is not confined to the nerves alone. For example, one of my relapses has left me with a vision impairment in my right eye. Another relapse has caused the left side of my chest to lose muscle tone and hence my left pectoral muscle is slightly lower than my right pectoral muscle.

So each relapse has to be taken serious and as an MS sufferer you need to become a lot more aware of your body. Small changes in your body's abilities will affect many things from lifestyle to daily routine work. Thus, your golf game will suffer but so too will your ability to do your job. The main thing to do is not to give in to the MS. You may have MS, but if you give in to MS ... then it has you! Once MS has you, you have taken the first step down an ugly road. It's a beast, so fight it. Try for as long as possible to do things for yourself by yourself! The added benefit is that this also makes you feel better mentally.

For this reason, in my present condition, I am refusing assistance from everyone and attempting to rest. Rest is very underrated, but it really does help in getting over tough relapses. Please do not refuse assistance if the relapse is so bad that you are endangering your own life or the lives of others. That would be foolish and counterproductive.

Give MS a good fight.

New damage?

A new development, over the past few days, has raised its ugly and monstrous head . On Sunday I started experiencing a little discomfort in my legs, which I did not heed. By Monday morning, this had progressed to increased discomfort with the addition of reduced walking abilities. By noon, had to admit that it was probably unwise to stay at work, particularly as I was in agony. The sensation was akin to hot needles being fired all along the inside of my legs. This sensation of extreme heat then spread to the outside of my legs. Every step I took brought on a renewed barrage of "hot needles" attacking the inside of my legs.

Once I got home, I was unable to move more than 20 steps without stopping until the pain subsided. Foolishly, I thought this had all disappeared over night, and happily proceeded to work this morning. I say happily, firstly, because I do enjoy my work very much, and secondly, because staying at home is not for me. When I got to work the pains started coming back, not very aggressive but certainly enough to warrant notice and caution.

By lunchtime I was back in the same situation as the previous day, but being stubborn, foolish and engrossed in what I was busy doing, I stayed on ... and am now paying the price for such a display of gross stupidity and wanton recklessness. I am now in exquisite agony, the burning sensation spreading upwards into my back, and down my right arm. Writing this post is not only difficult, but also painful.

As any MS sufferer will tell you, before the onset of either a relapse or flare-up, certain triggers are activated. Most sufferers recognize their particular triggers and can anticipate difficulty ahead, but never quite knowing when it will happen or what will be affected. So ... you are stuck with a warning light but no clue about anything else. It comes as a surprise to everyone when it finally happens. For example, the trigger may be that your legs hurt in a particular manner but the result is that either your arms cease to function or that your ears pop off.

These triggers vary from one type of MS to another, and even from one person to another. MS is very odd this way because no two sufferers will have identical experiences, and yet the end result is the same, namely scarring of some kind in the body. Multiple Sclerosis means "many scars". Unfortunately, the scarring is often not only physical, but this is a topic for another time.

One thing that does concern me about this present event, is the fact that these pains and resultant mobility challenges are new. I have not felt these before. According to the specialists, relapses are new damage and flare-ups are old damage reactivated. This feels like new damage, and although I do really like the people at the clinic, I do not wish to visit them for another treatment. I believe Campath helps but the treatment is harsh, and the subsequent isolation mind-numbing. The isolation is necessary to prevent exposure to a plethora of dangers which, without an immune system, could be debilitating if not fatal. Considering that I have daily contact with students, this becomes a serious matter for me ... and I have to start playing"where in the picture is Wally" with me being Wally.

So ... at present I am in a state of high anxiety, hoping to avoid another treatment while trying to find ingenious ways of getting to work (i.e. out of the house)!
{Queue in "the Great Escape" theme tune}

Multiple Sclerosis Diagnosis

In 2001, I experienced a rather strange sensation which was odd at first and worrying very shortly afterwards. My arms were numb and I was unable to lift them or do anything of importance with them. In fact, breathing was rather laborious too. A visit to my GP resulted in a diagnosis for Repetitive Strain Injury which happened to be the buzz word of the year 2001. Having had no Medical background, and being male i.e.gullible, I took the diagnosis as the Gospel truth. After 2 weeks of this, which had its moments to be sure, the sensations and abilities of my arms returned back to normal. So obviously it was RSI because rest and recuperation had healed me.

One year later, almost to the day, I started losing sight in my right eye. Everything appeared blurred and turning towards white. This was unrelenting because the whiteness persisted even when I closed my eye. Sleep was virtually impossible, for three reasons in particular:
1) the ever increasing whiteness made it hard to slip into sleep
2) the eye was hurting in a peculiar manner, and
3) when I closed my eye interesting patterns were flashing across a white background, which given my natural intense curiosity kept me wide awake.

Off to the GP again. My GP is brilliant! I described the problem and he immediately booked me in to see someone in an eye clinic a few hours later. This person shunted me onto the department of Neurology at my local hospital. Soon afterwards, a few weeks later in fact, I was booked in for a lumbar puncture and an Magnetic Resonance Induction (MRI) Scan. After some more tests the diagnosis was delivered. I was not devastated or even mildly upset, perhaps because I finally had an explanation and therefore something to work with. Ignorance probably played a significant part in this. But I quickly educated myself and my life partner, and we decided to try and have offspring before I got to a stage where things may not work as biology had designed. A personal note to all males with MS ... you do not have to worry about this ... trust me! It does take longer to ejaculate, so beware .... you will not be done in 10 seconds ... in fact, you may want to set aside a fairly substantial (in male terms) amount of time ... about 30 minutes if you are lucky! But rest assured ... it does not go limp and you will not fire blanks. The strange thing is that my wife does not see MS as a bad thing at all. Anyhow, I digress ....

In 2003, about 3 months before the expected arrival of our first offspring, I was 2 weeks into what is now known as a relapse. The entire left side of my body was paralysed, medically known as Sinistrous Hemiplegia. The first time this happened was probably the most frightening because I didn't know whether this was permanent or not. My first thought was "Would I be able to hold my child?". After 5 weeks there was good and bad news though. The good news was that it was temporary, but the bad news was that the recovery was not complete. After this episode, and subsequent episodes, I noticed a weekening on the affected side of the body, and each subsequent relapse has taken a little more functionality away from me. I know this sounds horrible, but at least I got back functionality albeit in a diminished amount. It could be worse ... a whole lot worse in fact. Again I digress ....

After the first Hemiplegia, I was immediately started on treatment. Stay tuned ...