Of MS and its uncertainty

[Inactive_User]

In an age where we all feel that we are but a few clicks away from self-diagnosis, we reach for technology to explain things.

In my own case, I presented to a high street opticians with optic neuritis which was referred the next day to the eye department of a local hospital.
Several slit lamp, visual field, peripheral vision and colour vision tests later, I was told that I should probably wait 6 weeks and it would be monitored to find out if it would resolve, but I should wait for the consultant to get a final decision.
I am eternally grateful to that consultant for requesting an MRI, which subsequently found lesions which would mean a referral to neurology to confirm that previous attacks which were put down to ‘stress and anxiety’ were actually more likely to have been attacks of MS.

In course of 2 months, I went from a presentation of optic neuritis to a referral to neurology for diagnosis of MS, and I consider myself very lucky. Many others have faced prolonged diagnostic tests and months or years of anxious wait to be labelled with a disease that they have very little control of anyway.

For me, the most impressing feature of MS is uncertainty.
It’s not just in a diagnostic, future planning or symptomatic sense – but the sheer uncertainty from the very beginning.

From the onset of the first clinical symptom which means presenting yourself to a GP, hospital or opticians, there is mass uncertainty about the cause of the problem. Weeks will pass and eventually you will receive an MRI, from which it can be discerned that there is a problem – but that’s far from the end of it. That’s just the stepping stone to a series of new and equally frightening experiences of increasingly more serious looking medical staff telling you that there are symptoms consistent with a demyelinating disease which could or could not be multiple sclerosis.

In the event that you do eventually receive a diagnosis of MS, the uncertainty is far from dispelled.
Reaching once more towards the internet, you find that there is no shortage of information on MS; from potential causes to coping techniques to support groups and forums – there is a huge amount of literature and information in various forms that you can read until your blurry eyes can take no more. But they everything written will tell you the same thing: There is no eventuality.
There is no defined route out of the muddle in your mind. To understand an illness you have been diagnosed with, you want to know what to expect, how it will affect you, when things could get worse. No one of the thousands of web pages can tell you what you are looking for because there is no answer.

And so the uncertainty can never truly resolve, not with diagnosis or even offered treatments.

Therefore the hardest part of MS is not the attacks, which we can deal with. It’s not the stigma and preconceptions that people have of wheelchairs and paralysis, for which we can educate people. It’s not even the knowledge that, in time, it’s likely that things will most likely get worse with advancing years struggling with the illness.
The hardest part of MS is the daily uncertainty of not knowing what is next, when you will be affected and how you will go about your life.

Acceptance of this, for me at least, will be a difficult process which no amount of MS specialists, nurses or treatments can possibly ease
MS is a personal illness.
It will affect every individual in a different way, albeit perhaps with similar symptoms and with some time passing between those symptoms.

At the neurology department today, I saw an older lady who has MS. It was clear to see that it had progressed to secondary MS as she was in a wheelchair and suffering quite badly from ataxia.
She was with her husband in the waiting room beside the water cooler. She unsteadily picked up a cup and took it to the faucet of the tap and repeatedly tried to reach to start the flow of water when her husband tried to intervene and dispense the water for her.
She tipped out the cup, scowled at her husband and eventually, in her own time and of her own accord, managed to fill the cup.

It was clear to me that it wasn’t simply refusing to accept help. It was her way of saying that although she was enduring the effects of her own body attacking itself, she would not let it get the better of her.

I hope this steely determination is in all sufferers of MS. It is necessary to navigate the maze of emotions that it evokes in everyone who faces it in their lives; whether or not they’re currently ‘suffering’ its effects, or indeed, its uncertainty.

[chocorange]

hiya

i have no idea who u are but what a cracking post! theres a couple of things u have mentioned that i view differently but thats the way it should be!

regular users of the board know how important keeping the mind strong when my carcass is failing me. i try to choose my words carefully eg i dont use term ms sufferers or fighting ms cos i dont think they are beneficial to me.

one of the regular users of this board his died recently-he truly was an inspiration to all who knew him-especially me.

bravo, ellie

[Anitra]

Hi,

I have been told (and can readily believe) that many people find the uncertainty of MS worse than the symptoms themselves.

Even when you are relatively OK, you have no idea how long things are going to stay that way, or what will happen next. In a culture that raises most people to believe that they are in control of their own destinies, that is hard!

But of course, the truth is that nobody is in charge of their own destiny. We have all known or heard of someone leaving the house fine in the morning, never to return - either because of some tragic accident, or a catastrophic medical emergency, from some condition they didn’t even know they had.

In that sense, it sometimes helps me to think that nobody knows they will be fine tomorrow, or next week. They just think they do! People with MS are more aware than most of the uncertainty - but it’s there for everyone - whether they realise it or not. Nobody gets a guarantee.

Even though MS is not usually thought of as a killer, I have definitely become more aware of my own mortality, since being diagnosed, and even though I have been relatively lucky, so far, in how MS has treated me, I still have this feeling it will “get me in the end”. I’m sorry if this offends all those people who insist you cannot die of MS. I’m sure it will be years and years away yet, so I will not necessarily die young, but I certainly feel that ultimately, one of the causes, if not THE cause will be MS. I think I am less likely than most to die peacefully in my sleep “of old age”, and less likely to die of something I didn’t know about (although some studies suggest an undiagnosed condition is the leading cause of death in MSers, because people who are used to chronic illness blame most things on that, and are less inclined to seek help if new things crop up).

I’m not sure if it’s good or bad to feel more conscious of your own mortality. In some ways I think it’s a blessing (not necessarily in a religious way), because we can savour things other people take for granted. But conversely, I do feel more guilty about “wasted time”, and all the days I haven’t really done anything - which, paradoxically, are getting more frequent, as I get stealthily more ill. I know it is unrealistic and unhealthy to keep berating myself for all those exciting (or even ordinary) things I’ve never got round to, because “Seize the day!” is never going to be a realistic motto for people who will spend most of their lives with pain and fatigue to overcome first! I have to learn to give myself a pat on the back (haha, that hurts with MS!) if I manage just a small thing, and not feel like a loser just because I still haven’t planned that holiday, or taken up that new hobby, or whatever.

Tina

x

[AnnieB]

@db9355 you’ve hit the nail on the head, well for me anyway.

I’ve always been a control freak so MS has presented whole new personal development opportunities.

@Anitra. MS has taught me to take pleasure in the small things in life - a cup of tea with a friend in the garden on a sunny day. I see ‘seize the day’ in that sense, not in terms of grander gestures. I think as a society we have lost sight of the important things in life, they are not necessarily that once in a lifetime experience.

[Sewingchick]

I thought this was a really interesting post, too. I would like to say something about your fundamental point, that the really hard thing with MS is the uncertainty. I think this, like everything about MS, is different for different people.

I’ll describe my own situation. I was diagnosed in 1999 - I had very little waiting about for a diagnosis and my symptoms were mild and causing no disruption to my life. For several years, I was convinced that I had been misdiagnosed and so I was not at all worried about the future. Over the years, my symptoms (walking in particular) got worse and I began to accept that I have MS, but became convinced that I could control my deterioration by keeping to a very restrictive diet. I was still not worried about the future since I was living a normal life and was sure that I would continue to do so. I knew there were many uncertainties with MS but was optimistic that I would always come out in the better, rather than the worse, place that I could end up.

In 2007, I started to deteriorate much faster. My walking is now very poor indeed and I can no longer drive or cycle or clean or cook (bye, bye restrictive diet). I use a wheelchair or scooter to get about outside - I can still make my way around my house and go upstairs to go to bed. I still don’t worry about the future and I’m not bothered about the uncertainty of what will happen to me. It could be good, couldn’t it? I could drop anchor here or the drugs that I’m on might make me better. My view is that all of life is uncertain and that no-one really knows what their life is going to look like a year from now, never mind five years or ten years and this is just as true for people who have not been diagnosed with MS. Managing the physical struggles that come with MS is something those who have the disease have to do. Not all of us have to engage with the uncertainty of the future. I don’t engage but maybe choosing not to isn’t an option for everyone, I don’t know. Maybe my character means I don’t worry about the future but other people have to - what do you think?

[Inactive_User]

I’m glad that it’s sparked conversation and that people can relate to it. It would seem that there are few things that are completely relatable; one is the process (dealings with doctors, the uncertainty, the treatment options) and the other would be certain symptoms like fatigue!

I would agree that the wording perhaps is not the best choice. Words like suffering or battling aren’t best placed to describe an illness, which, at the end of the day, is your body! There is no foreign invader, no contracted entity. It’s your own body which causes the symptoms.

I used to always believe I was subconsciously self-destructive. A diagnosis of MS simply confirmed it.

I can relate to what is said with regards to not being able to fully seize the day but holding on to notions of inspiration and knowledge that you have power, not over the condition, but over its hold on you. I’m fortunate enough to be diagnosed at 25 and thus don’t have the build up attacks and disability that some have.

This sounds utterly made up, but I promise it’s true:
The day that I came back from my very first hospital trip and the first ever time the two letters were mentioned to me, I was reading the newspaper and there was a story of a man who had a terminal cancer and was given just months to live.
He continued on with treatment and went away because he didn’t want his family to watch him die.
On return home, he and his wife were driving down the motorway when they were struck by a lorry and the man died - his wife survived.

When his wife got out of hospital, she returned home to find a letter was waiting for them giving him the all clear from cancer.

There is a bitter uncertainty about life in general, not just those who have MS.

When asked by a friend about my MS and if I would end up in a wheelchair (i’m sure we’ve all had this) I said “Perhaps”
“But perhaps it won’t be MS. And perhaps it won’t be far off. And perhaps you will too, perhaps even before I do.”

And perhaps we need to realise a little less and live a little more, to the fullest effect that we can given our immediate circumstances.

There is no doubt MS makes you consider your own mortality more than the average person, but what if that isn’t necessarily as bitter-sweet as it sounds?
One of my greatest heroes in life was Christopher Hitchens. A man struck down and killed by an incurable disease in his prime of life.

Some people don’t get warnings of their future.

In a final anecdote, my mother told me of a story a long time ago about a woman who was misdiagnosed as terminally ill. She sold her home and her possessions, made a bucket list and ticked them off, one by one.
She was subsequently informed that she was not terminally ill and is suing the NHS.
On consideration, would she have done the things she had done if she didn’t believe her time was due?
Or would she be paying off a mortgage, working a 9-5 and living a normal life to eventually grow old with regret?

[Paolo_Smythe]

In light of my MS diagnosis, i elected to adhere to the Swank diet. It is quasi-vegan but permits fish and most poultry / game. And i can still enjoy booze and chocolates. But the most compelling statement read in conjunction with Swank is that:

‘MS is an opportunity to live life to its best and to its fullest.’

I do not consume cow derived products or oven ready meals or hydrogenated fats or saturated fats, because frankly, they are all crap and i deserve better.

I am also of the conviction that my life and this body, are to be invested in, not risked. Being fit and active i used to indulge in a diet which included the aforementioned crap, thinking that i did enough good to undermine any negatives. Now however, i crunch my multivitamins (along with Tecfidera) to make a good thing better!

I am lucky. I have RRMS. My mum had MS of a more progressive nature, and not at a time of such DMD availability. I am currently improving towards complete remission and i am doing everything i can to ‘ensure’ this trend continues.

Should i start checking out wheel chair catalogues? not yet. Will i ever? perhaps. Might most people? it is likely. Getting older is a privilege some i have known were not blessed with. If i am to pay for my longevity by way of enduring ailment and frailty, well so be it. I feel no different to the next Joe or Jane.

Uncertainty sucks to be sure, but no one is immune to this.

[gingerlil]

officially diagnosed in '96, but symptoms for at least 10 years before, nothing visible and happily working until January when Neuritis struck me on the left eye. The attack was unusually severe and left me permanent damage of my vision. One could say the Ms has finally caught up with me.

[alison100]

What an interesting discussion.

It seems to me that most of us go through life running headlong round the edge of the abyss without even noticing it’s there. Then a game-changer like an MS dx comes along and gives us a glimpse into the abyss - without the option. The abyss was there all the time, only now we know it, and life doesn’t have an ‘unsee’ button. How to deal with that and everything that it implies is a job of work, no question. I guess we all find our own way, more or less, but it’s hard work, and the job is never finished, which is the hardest bit.

Alison

[Paolo_Smythe]

Profanity for emphasis - i fucking love this post.

[annelda72]

I find that whilst fatigue brings me down physically, the uncertainty is what brings me down mentally.

I’m sure they’re related and probably feed off each other. For me they are the worst things.

I know that nobody has any idea of what the future holds but an MS diagnosis to me means it’s less likely to be the life I truly want. Too tired and in too much pain to make all my wishes happen. I do have a bucket list though - trying to be optimistic.

[Paolo_Smythe]

in fact, i am going to print that out and nail it to my wall!