7th

I wrote this over 3 years ago,

Hi

! My name is Fiona, I was diagnosed with RRMS in 2000. What I now have to say may sound crazy to some, ridiculous even, but to me it is perfect sense and is very, very real. I am closer than I have ever been, but not quite there. If I was writing this after I had proved my point, it would appear that this has been written with a certain amount of smugness and self satisfaction, so I have decided to write it now, and to explain what I believe and know.

 I believe and only in my case, that my episode of MS was like an exploding bomb that caused possible permanent damage at point of impact but the fallout caused actually being reversible this is all really hard to explain as it may not make sense to anyone else but I will do my best. The psychological implications of being diagnosed affected the physical, I’ll explain, during the episode I was well aware of a ½ second delay, trying to hide this I consciously tried to compensate or adjust my walking. By doing this when the delay went and I believe that I went in to remission, by doing this I had caused myself further problems, particularly in being able to adjust back as before.  And this and I admit to may have been my own prejudices or thoughts on disability, it is not that I had any particular opinions against, it’s just I had never included myself in that particular world, and it shames me now that I was so indifferent to disability in the past.

I have visited a Chiropractor several times and there have been remarkable progress as to the strength of my upper torso, and several things have improved. I have had certain moments or periods of time where my walking has become so much easier it has been rather remarkable but these times are never witnessed by others and never become permanent, and are not imagined. I think about walking every waking moment it is the first thing I think about and the last. I twist, turn click and bend permanently trying to get back that moment this has become, I suppose kind of obsessive behaviour. I have tried many things. I have an ache in my lower back and two lumpiness parts at the top of my right buttock, I am extremely lucky and have no pain, but I am convinced that I have some kind of silent sciatica that effects my right leg and foot, and that this also causes lack of mobility in my right ankle and foot, I am aware of the expression dropped foot, not a term I like at all.

Before I started seeing my chiro I had an uncomfortable tightness in my top back which nothing seemed to relieve, these have now gone but I do get a less severe tightness in my right upper back/shoulder near my neck, this seems to connect to another tight area in my lower upper back on my left side, this is connected to my lower back area and the two raised areas of my right upper buttock which then effects my knee and foot. I don’t know if anyone experiences anything similar, but I am quite confident that this is resolvable with the help of chiropractor manipulation and adjustments I will continue with my investigation into this, what I have experienced so far has been positive, stress has also had a large part to play especially having to perform for others and this again has had a massive effect, because trying too hard is not good, relaxing is the key but that is easier said than done.

So I find myself where I am today, because I have tried and fought too hard. I have become a type of recluse as I have no desire to be in the outside world at the moment, not until I have proved this. Also I have made a deliberate effort not to enter fully in the ms world, for no other reason than I feel for myself it would be dangerous to do so, I think that there is a danger of being taken in by it all, the fear of it all, too much info is not good there has to be a point where you stop taking everything in as there are so many variants of ms. I think RRMS should be treated differently as it is not the same as permanently having the condition, there are differences. I don’t deserve to be in  a wheelchair and I don’t mean that as “it’s not fair,” or “Not me” I mean I’m not worthy, I have felt a fraud but I’m not that either. The classic will be “she’s in denial” that I am not, I know what I have been diagnosed with, I know what could be etc. etc. but because I have questions that I want answers to does not make me in denial, that’s all it is I want somebody to actually try and prove me wrong with hard facts, but I know they cannot not conclusively anyway. I know that my ms is not active at present, there are other reasons.

There are so many different emotions involved in being diagnosed with ms, I remember when told the diagnosis of MS being totally relieved but devastated at exactly the same time, relieved that I knew something was amiss, and devestated at the diagnosis itself as MS conjured up the picture of Zimmer frames and wheelchairs it was something other people had other people I did not know. This illness belonged to someone else, not me.

Then there is trying to separate the physical and the psychological implications and this one is particularly hard, as stress definitely has a physical effect, and the physical has an effect on the psychological well being kind of another catch 22, no wonder depression comes into it and not because of the diagnosis alone, as another catch 22 which at sometime previous correct, I would be happy if I could walk better, I would walk better if I was happy, this scenario has now passed as there is a larger physical difference which I believe has been caused by myself, trying to adjust poor walking and thus causing a more permanent problem when in remission, I know that MS is not active in my body at present, how do I know this? I just do, but to others it appears that I am  getting worse.

Another thing that I believe is that the “feel good factor” is a psychological phenomenon not physical, why do I feel this? Because in the past, not now I would have moments of fluidity when in a much less stressful state which would last for several hours, this was where I became my worst enemy, as doubt would enter my mind that it wouldn’t last and I could feel the stress slowly but surely returning and eventually that feeling of goodness would leave it just couldn’t compete, it was the weaker contender.

It was as if I didn’t want to be happy as I wasn’t allowing myself to be, this caused me awful frustration and many, many tears.

Although I never wanted to be in the MS world box, I have managed to put myself into my own box, not going out, not meeting anyone, not discussing MS it’s not that I don’t believe I have it, but I don’t believe that all that I am now experiencing is solely down to MS although it is intrinsically linked if that makes sense.

I did start DMD treatment, but didn’t follow the timetable rigidly, and as it was an expensive drug but I was not using it correctly, wasting it, I decided to stop all together, this was another area I had doubt, does it work or does it not, I just didn’t have total faith in it, although it was brilliant that I had been offered it in the first place, I have never regretted stopping at all and I think it is best for others.

When one believes in something so strongly, it is wise not to blurt it out too soon, although I have always said to my family after my episode it’s all in my head, it’s all in my head, you cannot expect them to understand totally as it is not their experience it’s mine and mine that I must deal with, because this has now gone on for a while, they must have their doubts, but their support has been paramount and non judgemental and that has been so important, for me to carry on with my belief.

You see it’s really funny, because I feel so strongly about psychological influence negative and positive and how their influences have such dramatic results, I now understand that miracles can happen, if the reason why you cannot walk is mainly psychological, if you are told in the right way and by the right person who manages in what they say to override or break that cycle, then it is possible, to pick up thy bed and walk, now you’ll think I’m crazy but I am not religious at all, I am just a follower of correct values and morals, basically I know right from wrong, what’s legal and what’s not.

All this has managed to make me incredibly lonely, it is mine and perhaps mine alone, tears of frustration have been many, and usually alone. You see to anyone else I am gradually getting worse, but not because of MS alone it’s a combination of issues over a space of time I seem to have gone through many, anxiety being one in several forms, low self esteem another very important one, but never fear of what may be, and that has been one I’ve had to consciously resist.

I know eventually I will get there it is not a question of if, just when. Also this is nothing to do with a cure for MS, I’m not saying the isn’t one it just hasn’t been discovered yet. This is about management for RRMS, and some theories and questions that need conclusive answers, not perhaps, maybe, or it’s unpredictable, I’m talking about the individual response to the diagnosis and episode.

I would love to be in the position of being able to afford an independent MRI scan and have it compared to my original  by a qualified chiropractor. I’d love to see the comparisons myself, and to have them explained to me.

I cannot understand why chiropractors are not involved in the treatment of MS more, they are experts on the spine and it’s effects. I think their influence and knowledge is seriously under estimated.

A Neurologist or an MS nurse I do not see, I just really don’t see the point for me anyway. Don’t get me wrong I’m sure they’re fantastic at what they do and know. These are my choices and I have made them for very good reasons.

I have an overwhelming suspicion that stress was a contributing factor in triggering my MS, not the cause but a contributing factor in making it surface, why? because going back to the time and after years of constant stress, not caused by myself, my sense of humour just up and left me, and the “every cloud” and “look on the bright side” and “it could be worse” defences went, leaving me totally alone, with an empty feeling inside, to be honest, humour is a great buffer to life’s disappointments, it’s a great coping mechanism, but I suppose it all got used up. This happened just before or at the same time which I now know was my first episode.

It is now time that I stop writing, as I’ll have the risk of rambling. It has been an important exercise to write down all that buzzes round my head and my experiences because I feel I have a duty to myself and to others to be heard even if it is just by the few. If only one person can relate, if they have MS or not, it has been worth writing this for the last few hours.

                                                                         THE END