This is a tough list to compile. I say ‘tough’ because there are way more than 10 feelings that I have experienced in relation to my MS diagnosis. But it is also tough because I am currently going through very similar emotions with regards to another aspect of my life;* therefore these feelings feel pretty fresh.
Most of us are familiar with the idea that being diagnosed with a life-changing, chronic condition brings about a state of grief. There’s a heck of a lot to deal with in coming to terms with the changes in your life and it’s often too much to process at first. It takes varying lengths of time for people to reach acceptance, if, indeed, they ever do.
There are, of course, several stages of grief (shock / denial, pain / guilt, anger, despair / depression, acceptance and hope), and I can honestly say, 10 years down the line, that my ‘grief’ was textbook.
The list that follows focuses on the ten most powerful feelings and reactions that I have experienced over the years due to my MS, but mostly they relate to the first year or so after diagnosis. Some are surprising, some are obvious and others seem downright shameful.
1) Shock – I was literally shocked into silence when I heard the words, “You have MS”. Nothing could have prepared me for that blow. My body had been gradually falling apart in the proceeding months and to hear someone tell me that it couldn’t be fixed was far too much for me to take in. I fell swiftly into a state of denial, although I wouldn’t have known it at the time. As a way of protecting myself from the devastation I simply carried on as normal, not taking a single day off work and refusing to listen to all the nagging advice surrounding me.
2) Fear – Around one month after my diagnosis I experienced a pivotal moment of realisation that set the ball rolling on a lengthy spell of pure fear. I think I must have walked, or rather, wobbled and staggered, around in some kind of wide-eyed daze for several months. The fear was unleashed after a phone call to my aunt, who has MS and was residing in America at the time. She was alarmed to hear that I hadn’t started any treatment, especially after hearing the long list of symptoms I was experiencing and she surmised that I needed a new neuro and should probably be assessed for Primary Progressive MS. Too much. That was too much. At just one month in I was not ready to face any of this and I certainly didn’t have the energy for it! Having experienced optic neuritis, loss of mobility and loss of continence I was convinced that it was all going to worsen rapidly and that pretty soon I would find myself in a wheelchair, unable to see and unable to use the toilet on my own. That’s some scary stuff right there.
3) Determination – At some point during the first year I became very determined. The way I saw it (and still see it) is that you can go one of two ways. You can wallow in it, you can be consumed by negativity, you can give up on life. Or you can fight against it, make the best of things, try to be positive and look forward to the future. I began early morning sports physio at a local centre and gradually got my legs moving a bit more. I purchased a kick-ass fitness DVD package to do at home, which enabled me to press pause as often as I needed to. I maintained my figure and my fitness and began to get my life back on track. I had a supportive boyfriend and family, a job I loved with colleagues I loved and so much still to live for. Which brings me to…
4)… Excitement – That’s right, excitement. Once I’d ditched the fear and started focusing on the future I was excited about this new chapter in my life. Through the MS I had come to realise what was good and what I wanted from the future. I made new friends who also had MS, which gave me a whole new social life to enjoy. I’d experienced first hand how truly wonderful the NHS is and found amazing, friendly support in my expanding medical team. MS was a gift (seriously, I really felt this way) to allow me to sort myself out. It also gave me a challenge – something to compete against. Take that, MS. POW!
5) Frustration – The excitement didn’t last long. Sure, I was still excited about my future, but I would rather the MS wasn’t a part of it. Despite all the home fitness sessions I was doing, I still couldn’t walk far and definitely couldn’t run. I held onto a false sense of hope that I would be able to gradually work my way towards running and perhaps even take part in a 5 K run. I was never deluded enough to think that I’d ever run in a marathon, but just to be able to run. Man, I longed (and still long) to be able to run. I became frustrated. Frustrated with my body, frustrated with the pain, frustrated that my legs wouldn’t do what they were supposed to do and what they had once been so capable of doing. I was frustrated with my energy levels and frustrated with everyone around me for not ‘getting’ it. Grrrrrrrr, I just wanted to be normal!
6) Anger – Frustration soon merged into anger. This wasn’t the kind of anger expressed through rage or violence. This was more suppressed, which has the effect of leaving you feeling depressed and irritated with the world. Why had so many of my friends stopped calling? Why didn’t anyone care about what I was going through? Why had this happened to me? What had I done to deserve this? Which leads me to…
7) … Resentment – It wasn’t fair. Why had I been lumbered with all this health c**p when I had lived the purest of pure lives. I didn’t smoke, I didn’t drink (at that point!), I ate healthily (again – at that point), I was fit, I was young, I was hardworking, I was honest and a good person. Why? Why? I couldn’t help but feel bitter resentment towards people who appeared to abuse their body with cigarettes, with drugs, with drink and with junk food. I was angry at smokers for knowingly poisoning their body and getting away with it. Why did I have MS and not them?
This isn’t a very healthy view to take and I’m happy to say that it was a fleeting, but nonetheless important and perhaps inevitable, part of the acceptance process.
8) Intolerance – Still within the theme of resentment, frustration and anger, I pretty soon developed an intolerance for other people’s minor woes. If someone had a headache, I didn’t want to know about it, it was insignificant in contrast to what I was going through. If someone had cramp in their leg – Seriously, are you kidding me? I could not stand to listen to anyone whinge about their tiny little niggles. On the flip side, if someone had a genuine ailment or were going through something properly traumatic I became a lot more caring than I ever was before. I’d been dealt a blow in my own life and now knew how vital it was to offer support and kindness to others going through a bad time.
9) Contentment – Within a year of my diagnosis a wave of contentment washed over me. I was engaged, I had started treatment that would transform my life, I was in a job that I loved with colleagues who supported me and who allowed me the flexibility I increasingly needed for medical appointments and worsening fatigue. We’d adopted 2 cute balls of kitteny fluff, who would herald the start of our very own little family. Life was good. I was content.
10) Acceptance – This is a strange one. Just when you think you have come to terms with MS something happens, like a relapse or a worsening of the condition, which sets you back again. On the whole, however, I think I have accepted that MS is, and always will be, part of my life. And all I can do is try to make the best of it.
* To be discussed in a later post.