It’s been over a year since I was taken to hospital in an ambulance and subsequently diagnosed with primary progress multiple sclerosis. Going back into ‘the real world’ had been a very daunting experience after my discharge a month later and for many weeks I was in a wheelchair before progressing to a walking frame and finally to crutches and now to a stick. Now that the MS has stabilised I am able to walk unaided for short periods and I have also learned to come to terms with my limitations. I can manage the toileting difficulties. I understand that if I have a bad night’s sleep or over-exert myself physically, I will need to make time to rest. Meditation is a daily ritual and one that I ensure I make time for. I have even cut down my intake of wine. I know there are some foods that I love but that I should now steer clear of because they make me feel bad. I don’t deliberately deny myself these forbidden foods but it’s usually never as good as I think it’s going to be and I nearly always end up regretting it later. Mind and body are gradually brokering a deal where body gives clear evidence of what the consequences of certain actions are, and mind is finally learning to actually shut the fuck up and take notice.
There have been a lot of documentaries on the television recently about Princess Diana. It’s hard to believe it was twenty years since her death on 31st August 1997 yet in some ways it seems like a lifetime since I was back living with my husband on the Gold Coast. On the day of her funeral I had been right in the thick of a control drama that was expertly directed by my husband’s business partner, in which my husband played a superb role as best supporting actor. I remember phoning him on the day of Diana’s funeral and naively trying to reason with him and explain my side of events. I was ruthlessly demolished during that conversation and afterwards, feeling demoralised and exhausted, I watched some of Diana’s funeral. My heart lurched when I saw the forlorn hand-written card that her two boys had placed on coffin that simply said “MUMMY”. I cried as though my heart was going to break. Like so many people of my age in that era, I could identify with Diana and crying my heart out along with millions of others over her death and for those two little lost boys rather than sobbing alone over my own petty grievances, gave me a sense of oneness and relief, if only briefly.
Our general election took place on the 23rd of September 2017 which is the anniversary of the day the neurologist visited me in Christchurch Public Hospital to tell me that I have multiple sclerosis. I’m left feeling indescribably sad, not about the MS anniversary but at the amount of hatred that seems to be around at the moment. There was no clear result in the election and it will be down to the parties themselves to broker deals and cobble together some sort of workable coalition government in the MMP environment that operates in New Zealand. The media isn’t helping, nor are the people who use the anonymity of using social media to vent their spleen and to make sometimes utterly vile and hurtful comments that I would like to think any caring human being would never make in person. Most of these inflammatory news stories have a sensational headline with very little content and are only published to prompt faceless keyboard warriors to respond to something that, aside from the headline, they’ve quite obviously not read at all. Yet they are unrelenting in their ego-based comments, all the while making quite clear their need to be right, sometimes in the same breath as talking about compassion and co-operation. It would be funny if it weren’t so sad.
I have removed all the news sites from my Facebook and Twitter feeds so that I’m not tempted to get stressed out over these political shenanigans or worse, wade in and join the argument myself. This is a good thing because the biggest contributor to a worsening in my MS symptoms and the thing that can bring me to my knees (literally), is stress. I can’t avoid stress any more than anybody else can. It’s a part of life, and sometimes a good part. I just need to make sure I have well-maintained tools on hand to deal with it, preferably before its detrimental effects start to play havoc with my body.
Something that has contributed to my stress ever since the MS symptoms first materialised five years ago, is menopause. Or maybe it was stress contributing to the menopause symptoms? No matter which way I look at the chicken and egg dilemma, there is no denying that menopause affected me very badly. Hot flushes and brain fog were commonplace to the point where I often felt as though I was going to pass out. Most nights I would awaken at least three times during the night, initially feeling fine, only to be overwhelmed five minutes later with a killer hot flush and if I didn’t have a towel on hand, I would soak my sheets and pillows. Those sleep interrupted nights only added to the uncontrollable tiredness that would kick in around lunchtime when I would need to lie down and have a nap. When it happened at work I would struggle to keep my eyes open, particularly during the hot summer months.
I am particularly keen to be at my best this summer because my sister and her partner are coming over from England next year. I am so excited about this and we have arranged to hire a campervan and take a tour round the lower part of the South Island for two weeks. In desperation I went to see my doctor and he has put me on Hormone Replacement Therapy. I don’t like taking medication of any sort and I’m really glad that I’m largely left to my own devices with the MS. No-one is suggesting invasive treatments or asking me to consider taking drugs with horrendous side-effects. I occasionally take diazepam for muscle spasms and I have painkillers, which I rarely need to take. The only thing I take regularly is Vitamin D and now the HRT which has been an absolute godsend. After a month or so the constant nightmare of coping with the horrible effects of menopause disappeared so completely it’s hard for me to even believe they ever even happened.
I visited my neurologist yesterday for my six monthly once over and he was very impressed with the improvement in my strength and walking ability and he said that my body is healing itself. To what extent it continues to do this is unknown, and whether I have another relapse is also unknown. Evidently in some cases this doesn’t happen. I’ve been discharged from the clinic although I can make an appointment and be seen immediately should any new symptoms appear, or the existing ones deteriorate. I’m not sure that I totally get the primary progressive versus relapsing remitting MS situation after that consultation, but I don’t really care – it sounds like great news to me.
I’ve been through many ups and downs in the year that has followed my diagnosis. Yet for all of that, there have been a lot more ‘ups’ in the year following my diagnosis than there were in the year preceding it.
During the past year I have studied MS and the effect of diet, sunlight, exercise, genetics and medication. I’ve followed the guidelines up to a point, however after reading nearly everything I could lay my hands on about how our state of mind affects the physical body, particularly in the case of auto-immune disease, I know that my main focus needs to be on healing the internal causes rather than focussing too much on the external effects.
MS has taught me to listen to my body because now it literally shouts at me when something is not quite right at an emotional level and I’m starting to get stressed. I’ve learned to meditate, to take breaks, not to set myself impossible goals and that I don’t have to be constantly striving for perfection, because I’m never going to reach it anyway. Because of some of the hardships MS has presented for me, I think it has also taught me to be more understanding and compassionate toward others.
And I’m actually more than a little bit grateful for that.
Claire Jewitt 