Rachel Horne wrote a guest post on 15 July called Identity. I think just about everyone who has had MS will have gone through at least one personal crisis and hopefully come out the other end. This is my personal crisis story or losing and regaining my identity and written with the benefit of hindsight.
Diagnosis
I was diagnosed in 1995 with RRMS. In those days the mobile phone was similar to a breezeblock and the Internet did not exist. After the consultant bluntly told me and several trainees of my diagnosis I had to go home and look up multiple sclerosis in the Encyclopaedia Britannica. The entry was devoid of detail and meant nothing to me. I was diagnosed because of double vision which was there one day and gone the next.
My MS was not life-threatening in any form or fashion so life continued exactly the same as pre diagnosis. It morphed into SPMS in 2000. Little things in my life now changed but I was still working so I remained in a state of happy denial. In my mind I did not link these life-style changes to multiple sclerosis.
In 1997 I started a new job, a specialist computer contractor and was in fairly continuous employment usually working overseas. The occasional six or nine month break between contracts was stressful but I coped.
My life was turned upside down
On Monday, 9 January 2012 I went for an interview for a new contract in London. I returned home and told The Wife that my days of working as an IT contractor were over. Quite simply I no longer had the energy to commute into London and work for 5 consecutive days. The only option I could see was medical retirement. Incidentally I was not offered the contract.
Up until then I had a set of rules or red lines that defined my life; this was my identity. On that day Multiple Sclerosis changed my life in a very visible and permanent way. As an international computer contractor my job was binary; either I worked a five day week or did not work, a four-day week was not an option. Who was now going to employ an ex-computer contractor suffering from advanced MS? I looked around and there was no suitable work for me.
By taking that decision
Now I was at home 24 x 7. My working clothes or uniform took up permanent residence in my wardrobe. I had worked away from home every week for the last 15 years. Now The Wife’s friends were my only friends.
I felt isolated
Now I was on the ‘rock n roll’. Suddenly I had no identity. I had no self-esteem and felt valueless. I had no idea of how to fill my time, what I should be doing, where to turn for help or who would understand my problems. I felt worthless, these are emotions frequently associated with unemployment.
Now add advanced multiple sclerosis that was slowly but inevitably getting worse. In order to survive I had to change the rules I used to live my life. I needed new reasons to get up in the morning, find people to engage with and learn to adapt my life in order to accommodate advanced MS.
Looking back I can see that I needed a new identity or set up new rules to lead my life.
A lucky break
In August 2012 I was asked to give a 30 minute talk on my diagnosis of MS to a group of people from a pharmaceutical company. To my surprise and relief I enjoyed doing it. As so often happens in this world work creates more opportunities. I now do this several times a year but I now talk about living with a disability.
I give talks to trainee nurses at universities in and around London, I talk about the lived experience of living with a Long Term Conditions. Surprise, surprise further opportunities have followed on from this.
I was also introduced to someone who created a WordPress website for me; you might know it, Aid4Disabled.com. My early articles were truly atrocious. In fact I had no idea what I was doing. Over time I learned how to run the website, use social media and write blogs. In fact I am still learning and it provides me with an outlet so I can deal with my MS and live with my MS.
I was starting to give myself a new identity.
Move forward to today
I now have a new life which I enjoy. I have given myself a new identity. Equally important I have given myself a new set of rules that allow me to get the most out of life.
Basically I cannot walk unaided, not allowed to drive and must keep out of the heat. I have a funky mobility scooter, love travelling by train or plane. I really enjoy my new me.
Life has definitely changed for the better since I took medical retirement. Eventually I found a new identity but this only happened because I was determined not to let MS rule my life. My life now has a value and a sense of worth. I live by a different set of rules but my character has not changed.
Nowadays people contact me and ask me to work with them I feel a genuine sense of achievement. I am wanted and I have a value.
CoI – non
By Patrick Burke
Patrick was diagnosed with RRMS in 1995 but believes his symptoms started in 1972. The disease turned into SPMS in about 1999/2000. He was forced to take medical retirement in 2012 and set up the website Aid4Disabled in the same year. The website is the story of his MS since retirement and it describes a wide range of objects that are readily available for people with physical disabilities to improve their quality of life. Patrick is also a member of the Barts MS Advisory Group.
this is the story of my life !!
The need to change life radically at a certain point is the biggest difficulty that MS put me. With resilience and never giving up we gained a new life, perhaps better and more fulfilling. It is a pity that support in this transition usually does not exist and many of us MSers cannot overcome the difficulties.
Keep moving forward !!
Its all part of the ‘scrap-heap’ syndrome that is used s place to park people with advanced MS. Especially prevalent in the Western world where the family community is now not so strong
Your timescales are very similar to my own. Do you mind sharing which medications you have had at which stage please?
I have only ever had symptom management drugs Now I take Gabapentin to stop muscle twitching/restless legs, tizanidine to stop spams in my legs and clonazepam to reduce anxiety and help me to fall sleep at night. Tizanidine also helps me to sleep. These all started at about 2010.
For last 12 months I take alpha lipoic acid and Vitamin D3 that I buy myself
Within last 2 years Queen Square (London Nation hospital for Neurology) walking clinic prescribe me Fampyra and I get Botox from the same place but different department. Also I’m on the MS-Stat2 dug trial, started in June this year
Thank you for the reply. Is there any reason why you did not get offered any of the dmts?
In 1995 at diagnosis no DMTs offered to me ‘cos MS very very mild + not too sure any existed in UK. In 2000 diagnosed with SPMS and still patiently waiting for a DMT.
I was diagnosed but not told in 1994 and drugs were available from 1993. I was officially diagnosed in 2005 and thankfully was labelled relapsing-remitting in order to get drugs I suppose.
Would you not consider off label dmts or do you think your symptom management has worked as well as any DMT none of which have a guarantee of effectiveness?
I’m interested because ever since I was diagnosed I have chased drugs and was bitter that I was not told in 1995.
Anonymous at August 17, 2019 at 12:23 pm.
My MS is a very slow mover, I think it started in 72 and I do not believe there was anything around until the last few years that could really help me. Not eligible for off-label cladribine from Barts. I am trying my luck with MS_Stat2 drug trial + alpha lipoic acid. MS is still creeping onwards ever so slowly
I usually cannot hack posts like this.
Very inspiring, homie. Your wife is a good lady.
A great post Patrick. Thanks for telling it…
Best,
Rachel
‘ Self identity is composed of relatively permanent self assessments, such as personality attributes, knowledge of one’s skills and abilities, one’s occupation and hobbies and awareness of one’s physical attributes’
There’s nothing in this definition that allows for the impact of MS as described in your experience of increasing disability Patrick, or like mine: fatigue.
Having MS means that identify, at least for me, is a moveable feast and on days like today I have to be proactive about it. I have low level physical disability (EDSS2) despite being riddled with lesions, brain and spine. As I’ve learned this likely means my brain has utilised neurological reserve. On days like today I find myself thinking: ‘and boy do I know it, when my brain feels like it’s been soaked in vinegar and I’m lolling on the sofa!’ (not a proper headache) So, my fatigue takes two forms – gotta sleep for hours and hours, or resembling the aftermath of too much to drink.
Yesterday I was on top form, and when my husband got home I told him I’d had a positive day – satisfying gym workout followed by quality time with friends in the afternoon. I felt all those attributes of effectively engaging with my well being, self confident and being valued personally and socially. Today all plans have gone out of the window and consequently this is another occasion I’m letting loved ones down. All those physical skills and attributes that were fired up yesterday, all that positive, uplifting mindset are being challenged again! Added to the guilt of cancelling what I was due to do today is the insidious ‘am I somehow to blame?’
One of Gavin’s posts on sickness behaviour educated me that with it goes low mood or negative thinking. This has proved incredibly helpful when my MS flings me into one of these days, which it routinely does, because it means I can boundary my thinking and not let it run away with me. Despite which, it still shocks me the contrast in how I feel about myself and my capacity and willingness to engage with normal activities.
This is my focus for today:
MMR – Managing is not controlling. Mindfulness meditation. Relish everything good in my life.
Keeping my self identity leaning towards the positive and self affirming.
Everyone’s mood will change with or without MS. MS adds further problems to the mix like anxiety. looking at what you once could do. I think the secret is to look upwards and forwards as much as possible. Exactly what you say in your last paragraph.
Another difficult problem is realising that the rules or boundaries that define your life will change. I found these changes very difficult when I was forced into medical retirement. I was forced to create a new life, quite a challenge