Adjusting to life after being diagnosed with MS

Hello Ann, could you introduce yourself in a few lines?

I am an Anglo-American (English Mum and American Dad), 64 yr old woman.  Although I have spent more of my life in England, consider myself to be literally ½ American and ½ English and always seem to have “marched to the sound of a different drummer”.   I am a retired Registered Nurse and College Lecturer (in Health and Social Care + 1st Aid).  I live with my husband and will have been married for 19 yrs this November.  Both of us rely on a hand embroidered little plaque, given to us by a friend to commemorate our wedding - a date we have often forgot!  We have no children but have a tendency to “adopt” people who quickly become, integral “members of our ever-extending family”, which continues generating enormous, mutual joy.  I “confess” to being a bit of a perfectionist (although keep trying not to be), believe I have an indomitable spirit and irrepressible sense of humour, with a reputation of being a “character” and always laughing +/or making others laugh as well.  Although I have always prided myself on “knowing myself”/being well attuned to my body and mind, this characteristic certainly didn’t apply to my MS!

How did you find out you had MS and how did you get your diagnosis?

I only began to recognise I had a “problem” in about 2005-6, when I couldn’t remember how to open the boot of my car! My first thought, “Have I started to develop some form of early onset dementia?"  I began to more and more frequently misplace items and kept finding I was always “running behind time”……never having enough time and energy to complete tasks, either at work or home.   Unfortunately my “problems” had actually “popped in and out of my life” for many years but had always attributed these different, and in my perception, unrelated episodes, to stress, tiredness, my arthritis, “hormone levels”, having an underactive thyroid…….anything but MS.

In 1977, I woke up, shortly after going to sleep, with the most excruciating pain I’d ever experienced – every single tooth on the right side of my face felt like “lightening bolts” were shooting through them, extending to 1 whole side of my face! Unable to wait the 9 months before being able to see a Neurologist through the NHS, made a private appointment and saw this same Neurologist within a few days.  After conducting a thorough neurological exam and finding I had a 1-sided weakness (which I hadn’t been aware of), he queried MS but this wasn’t pursued, instead he diagnosed trigeminal neuralgia.  The Neurologist prescribed a very high dose of carbamazepine (for the nerve pain) and said come back if there is no improvement.  Not only did I experience no improvement but the excruciating facial pain soon changed from the 1 side of my face to the other.  I subsequently made another appointment to see him and I got the impression, rightly or wrongly, that this seemed to anger him; he couldn’t understand how or why this had happened and added another drug, Ativan (no longer on the market).  He said because of this “change”, the only other course of action, would be to surgically sever the trigeminal nerve where it entered the brain but had a high risk of paralysing my face, therefore being unable to smile or show any emotion! 

This was totally unthinkable/unacceptable and although the drugs seemed to have no effect, apart from experiencing a loss of my colour vision for a few weeks/months, continued to take these but eventually sought help from a local Osteopath, with a good reputation who also treated patients with Acupuncture.  He believed my pain was due to my neck being out of alignment and told me he had a high success rate with this problem.  After the first treatment, although the pain was still excruciating, also felt “something had changed”.  After about the 3rd or 4th session, I felt the pain had somehow “loosened its’ hold of me” and after the 5th or 6th session, my facial pain had “gone” but  replaced by a terrible, alternating, red hot burning with pins and needles and sometimes complete numbness in the palm of my right hand and 2-3 of my fingers.   Once the trigeminal neuralgia had resolved, the Osteopath/Acupuncturist said he was going to avoid any more manipulation of my neck, so I just had 2-3 more sessions of acupuncture and massage for the pain in my hand and fingers but without any noticeable effect and could be easily lived with. The relief, after almost 2 years of unremitting facial, jaw, throat, head pain, was indescribable.  In hindsight, now believe the above problems were actually the first signs of my MS.

Throughout the intervening years, I intermittently experienced inability in sometimes flexing my left knee, causing me to walk with it in a rigid, stiff position or conversely, being unable to extend it, resulting in sometimes waiting up to an hour before I could actually walk.  Some years later, started to experience excruciating, red hot burning, bilateral heel pain that continued for about a year but just thought my heels were “tender” and bought some  padded insole, used cooling gels etc but nothing had any effect.  I began to experience  periods of lethargy, fatigue, not being able to concentrate and began to think perhaps I had ME, Chronic Fatigue Syndrome or perhaps I had just become lazy, had suddenly developed a learning disability or this was all simply “in my head”.  Perhaps I had become a hypochondriac and therefore was certainly not going to admit this to anyone or investigate this!

I continued to have more and more difficulty in finding the time and energy to fulfil all my teaching, mentoring and assessing commitments, so began to “wind these down” in the 5 years before I retired in May 2011.   I couldn’t wait to retire, sure that this would restore my joie de vie (joy of life) but instead started experiencing longer and longer periods where I just “couldn’t function” practically nor cognitively but again chose to “deny” my symptoms rather than investigate them.  It was only on March 1st 2013, when I experienced a “real” problem.  I had developed double vision the first morning after flying to Florida, the previous late afternoon, for a 2 week holiday.  A friend, who accompanied us, thought it was probably just a bit of an eye problem he had once experienced (seeing “shadows” when watching television but had soon resolved after a few weeks – certainly not something to worry about).  I had no intention of this spoiling our holiday so carried on regardless and although the world became a very odd and confusing place for me, it wasn’t until a few days before our holiday ended, that I started to experience symptoms making me think I may be having or have had a stroke (CVA – Cerebral Vascular Accident).  I noticed both my hands and legs had developed a bit of a tremor, pins and needles and varying degrees of numbness and felt decidedly “weaker”.   5-6 days after returning home and having daily, unremitting terrible headaches, as well as still possessing the double vision in my left eye, decided I’d better check my bp (blood pressure and pulse).  Having hypertension (high bp) but being well controlled through medication, was surprised and concerned that my bp was greater than 200/120 and my pulse was in the 120’s.  I could no longer deny I had a problem and very, very reluctantly, asked my husband to drive me to our local A+E Dept.

I was lucky in being seen by a wonderful A+E Consultant and because of a shortage of staff, he personally wheeled me to the CT scanner, believing this diagnostic test needed to be urgently performed.  Surprisingly, the CT scan didn’t show any vascular problem, ruling out a stroke or brain tumour (which I actually thought I had), so the Consultant asked me, “What do you think it is”?  I immediately said, “It’s MS”.  These 2 words literally sprang out of my mouth without any conscious thought – MS was something I had never considered but at the split second, so many “pieces of the puzzle” instantly came together.  The increasing, numerous episodes of cramping in my toes, calf, my back going into spasm for 3 days, months of sciatica, but as x-rays showed decreased disc spaces between L2-S1, had put all of these problems down to this “wear and tear”.   

I was admitted that night; the Medical Doctors kept insisting I had a brain stem stroke but when examined 3 days later by a Neurologist, from another hospital, he said, “It’s MS”, although he also queried CIS (Clinically Isolated Syndrome).  I saw another Neurologist, in July, who talked to me about needing a lumber puncture but he didn’t really think I had MS. Although I was invited for a lumbar puncture 3 times, I politely refused the first 2 appointments……the thought of the procedure terrified me but actually, “it was a walk in the park” - nothing more than a little discomfort (an excellent Nurse Specialist employed a non-traumatic needle plus it may have helped I had now finally accepted I needed the procedure, so ensured I was totally relaxed – imperative in effective pain management).   I saw this same Neurologist again at the end of December; his diagnosis was “Benign” MS and although he didn’t personally think I would need a MS Nurse, he would refer me if I wanted him to – “Yes, please I did want”!  I first saw my MS Nurse in April 2014 and she confirmed my belief that she didn’t think I had “Benign” MS but said it sounded much more like RRMS (Relapsing-Remitting MS).  On my most recent visit to her, April 2015, I decided to “take the bull by the horns” and said to her, “Considering I believe this all started almost 30 years ago and have had no day without symptoms for over 2 years now, I think I must have SPMS (Secondary Progressive MS)”, she agreed.

What was your reaction when you found out you had MS?

My initial reaction to thinking/hearing the “possibility/probability” of having MS (in December 2013) was a relief!  I finally had a “name” for what I had been experiencing for so many years.  I was relieved that I hadn’t suddenly developed some kind of psychosomatic illness– it wasn’t something I imagined or somehow brought on myself, I had an actual medical condition and MS, in my mind, was something I could live with and manage!  Receiving my MS Nurse’s, very recent, verbal confirmation that I had SPMS, again, immediately felt a huge weight had been lifted from my shoulders and the “white elephant in the room” (a situation that no one ever wants to talk about) had at long last disappeared.  I’ve never really liked not knowing +/or understanding what and why I was experiencing all of these weird and so disabling, life disruptive symptoms.  I also believe the majority of people who experience this kind of thing, often having to wait so long to receive some sort of definitive diagnosis, must gain both a sense of relief and validity, instead of remaining in the terrible “no mans’ land”/ “limbo”, when no one seems to believe or come close to having any understanding of what someone is having to live with.

You formally have MS since 2013, what have been the major impacts of the disease on your everyday life?

Yes, I have to admit MS impacts on my life every day.  Everyday can be different, every hour can be different.  I never know how much energy +/or how much or how little I will be able to accomplish nor how many or what symptoms I will have.  Sometimes I feel fine until 1-2 minutes later when it feels like I have run into a brick wall and have no choice but to leave everything and sleep until my body “re-charges” enough so I can actually function again.  Sometimes my house and my thinking processes are as tidy and organised as they used to be, other times they are chaotic and disorganised.  There are times I look and act “ok”.  I have always prided myself on being an actress, par excellent, and believed if I acted like everything was fine, it would be.

Unfortunately this is no longer true, my MS is increasingly becoming more “visible” and now accepting I really need to explain this possibility to people around me.  If I need to perform some kind of activity or demonstrate I understand something being said to me, I can’t always do it!  I’m often unable to remember someone’s name, recognise their face +/or find the right word(s) to say, certainly not as quickly as I should.  It’s like there is a “time delay” and by the time I manage to “find the answer” it’s too late!  Sometimes I can walk fine but then without warning, I am either walking with a limp, an odd gait, look like I’m drunk, slur my words or use inappropriate ones.  Muscle spasms/spasticity and balance issues can last anytime between a few minutes to many hours and find I am increasingly “bumping” into things, dropping, often breaking items due to decreasing coordination and poor spatial awareness.  I don’t mind too much when this happens at home but when these happen in public places, it often causes chaos, concern and sometimes even disdainful looks and comments by those who witness these episodes.  Luckily, even when I hurt myself, usually only sustaining minor injuries but have chipped the odd bone here and there in the past), I can’t help but laugh! 

The funniest incident was when my husband and a friend and I were in a well-known car hire company (in America) and I fell backwards over 1 of our many suitcases, backpacks etc., completely “demolishing” the short metals poles and “velveteen” ropes that demarcate customer waiting lines because they fell on top of me! Staff seemed to “come out of the woodwork”, almost tripping over each other to assist me, enquire if I was ok but I was totally helpless with laughter!  I quickly assured them I was fine, I was a retired Registered Nurse, my husband was an EMT (Emergency Medical Technician) and our friend, a Registered Paramedic!  I also assured them I was ok, I hadn’t hurt myself (I wasn’t going to admit I’d banged my head!), it was just because I had MS and there were no health and safety issues for them to worry about!

As for today, how do you manage your life with MS? What practical advice could you give to other patients on how to cope with MS?

I am forever fortunate and grateful for having an extremely supportive, understanding husband, family, friends and colleagues who both make the good times even better and so help me through the pretty bad ones.  Having the silliest sense of humour is my greatest blessing and totally invaluable.  I’m not really sure if getting older or the increasingly problematic MS has intensified this facet of my personality and although always having the reputation of being a “character”, have become even more of one!  Christmas and Spring/Summer are 2 of my most favourite time of the year because they really bring out my “inner child”!  Our living room is like Santa’s Grotto at Christmas, full of different coloured lights, old and new ornaments, decorations on both the Christmas tree and under it and on every surface of the mantelpiece, hearth, shelf and tables.  Each Spring and Summer, I transform my garden into a beautiful and fanciful (at least to me) “outside room”, full of ever changing solar lights, garden ornaments, planters full of flowers and different coloured shrubs and foliage.  These seasons never fail to fill me with childlike wonderment and always makes me smile, gives me a sense of serenity and makes me happy and laugh, even when at my lowest ebb.

I only take diazepam (usually need to add naproxen), medication wise but also have begun  taking 4000iu Vit D (spray inside cheek or under the tongue) daily, have Aromatherapy Massage and Reiki every 3-4 weeks andhave recently started to attend a local Neuromuscular Centre 1-2x a week for a variety of exercise and alternative therapies.  When my pain becomes unbearable, have found a very small amount of cannabis greatly reduces the pain (probably due to its muscle relaxant properties) even if doesn’t always totally take it away and allows me to efficiently function for an extended period of time.  Sativex (a synthetic cannabis), according to my MS Nurse, does not seem to have the same properties as cannabis itself.  I too have minutes, hours, days when I experience so many negative emotions – frustration, sadness, anger, pain but doesn’t everyone sometime?

In the past, it became obvious that if I did too much one day, I would probably not be able to function for the next day or 2 or 3, so I started to find and implement a better “balance” to avoid this.  Lately, it seems no matter what I do or don’t do, my MS usually “acts up” almost every day, so now simply do what I think/feel is “right” for me.   If and when I can’t function, feel at risk, not safe – I cancel anything that I may have planned and just take it easy until I feel like I am “ok” again.  I have unfortunately had to greatly reduce my 1st aid, training and welfare activities as a British Red Cross volunteer but still able to participate in those that only last a few hours.  This way I can “still keep my hand in” and skills up to date without jeopardising either my own or others health, safety and well-being.  I also always have contingency plans in place just in case my MS becomes problematic, for the above reasons.

Joining Carenity has also played a large part in facilitating my becoming more and more proactive and “losing” a huge part of my self-perceived embarrassment and stigma surrounding my limitations.  I have gained so much confidence in being able to present “me” as I am now, rather than trying to present myself as someone I wish I was +/or used to be.  Everyone needs to know who they are and find, follow the best path for themselves.  Although “we’re all in this together”, we are all unique, different and everyone needs to find out what works best for them.

What positive message would you like to share with our readers?

I have only really been aware of the MS aspect of my life journey for the past 8-9 years but it has changed my perspective, approach to and understanding of life, beyond anything I could ever imagine.  I must admit I do “revisit” the past as it holds so many important, close to my heart, memories of people and events but now even more curious and excited, than I used to be, regarding what the future holds because the more I live, learn and experience, the more options, opportunities and possibilities seem to present themselves.  My ever changing MS has most definitely changed my life; how I see, feel and understand things but now accept and recognise it is an integral part of who I am and who I am becoming.   I don’t know what will happen or how I will feel tomorrow or the next day, month, year but who does? One thing I do hope for is that I’ll always be me, strive to embrace and celebrate who I am and each day as fully as possible.   I also hope everyone will always strive to embrace and celebrate who they are and each day as fully as possible.
I have only really been aware of the MS aspect of my life journey for the past 8-9 years but it has changed my perspective, approach to and understanding of life, beyond anything I could ever imagine.  I must admit I do “revisit” the past as it holds so many important, close to my heart, memories of people and events but now even more curious and excited, than I used to be, regarding what the future holds because the more I live, learn and experience, the more options, opportunities and possibilities seem to present themselves.  My ever changing MS has most definitely changed my life; how I see, feel and understand things but now accept and recognise it is an integral part of who I am and who I am becoming.   I don’t know what will happen or how I will feel tomorrow or the next day, month, year but who does?  One thing I do hope for is that I’ll always be me, strive to embrace and celebrate who I am and each day as fully as possible.   I also hope everyone will always strive to embrace and celebrate who they are and each day as fully as possible.