Jenny Blogging has become difficult for me; I feel that, in the past, I was able to provide positive strategies and viewpoints to living with MS and the difficulties that it brings. But staying positive can be tricky as your body starts to shut down, despite taking your own advice on how to keep going.
So, although I’m always happy to share what I find works for me, I’m primarily still occasionally blogging to record what’s happening to me, my body and my thoughts, as somebody who has secondary progressive MS.
The Uncertainty of Living with a Progressive Illness
Over the past few months I have thought about and questioned the uncertainty that comes with the diagnosis of a progressive illness. Multiple Sclerosis itself is an uncertain illness – we are learning more and more about smouldering MS and how things can be progressing, despite not having relapses. This is something I know extremely well – I once went approximately 10 years without an identifiable relapse, but my mobility still started significantly declining.
Retreat
Last month, I was extremely lucky to attend an MS and Carers Retreat, arranged by my sister-in-law’s charity – Bluerise Charity Retreats. Not only did I meet an absolutely lovely bunch of people in the form of MSers, carers and professionals, but I had the opportunity to take time out for me and to actually enjoy the slow pace that I now need. Too often, those of us with MS, or another kind of chronic illness, just keep going. We might have a family and/or work that takes up all our time or people that expect more of us than we can give. The retreat showed me how to slow down, how to use both the muscles and the abilities that I still have, and the importance of sharing experiences and feelings with others who understand. The uncertainty around the progression of multiple sclerosis is something that came up during the retreat; about how none of us knows where we’re going to be and what our bodies and lives are going to look like in 30 years.
Doctors don’t tend to talk about how to deal with the decline; they may talk about medicine to help the physical symptoms. But what about the mind? Where are we going to learn the answers and solutions to how to live with a body that is slowly falling apart?
I remember reading about how becoming secondary progressive can be a relief in some ways; we don’t have to worry about when the next relapse is coming because we’ve stopped having them. But, apart from the MS Society saying that there is no other MS stage after secondary progressive, there is very little information about what can be expected and in what time frame. Because even doctors don’t know.
For me, this uncertainty makes everything a little bit more difficult to deal with. The retreat showed me how to work with what I have now and, with the neuro physiotherapist on board as well, I was able to gain some specific advice around my particular needs. In the long-term, however, I know that this useful advice usually comes at a price – and this can be difficult for people who might not have the money to help themselves by going privately. Although the NHS is brilliant, I know that a lack of money within the NHS greatly impacts the amount of support and treatment they can provide to patients.
Uncertainty = Worry
The future scares me, if I’m totally honest. My children are growing up and, quite rightly, want to leave home and explore the world. From a parental point of view, I want them to be healthy and happy and do whatever they want that brings them fulfilment. But my sick person’s point of view also makes me wonder if I will be able to do things that mums do for and with their older kids. Visiting them in their own homes, for example. I don’t expect them to get adapted housing, just so I can visit a couple of times a year. I also already know that I would struggle with childcare on my own. So, if I become a grandparent, what kind of grandparent will I be if I can’t even take care of my grandchildren by myself?
Worry seems to be the name of the game when it comes to the uncertainty of my future:
- I worry about the children worrying about me – my daughter has admitted that she already feels anxious about me both being in the house on my own and when out.
- I worry about the effect my MS has, not only on me, but also on my husband – whose life and lifestyle are as affected just as much as mine.
- I worry about my parents, who are getting older and still support me so, so much. Surely it’s my turn to support them now? But how can I do that when physically I struggle so much with everything?
- I worry about money – it’s getting more and more difficult to work, what, with my lack of mobility and the vast amounts of fatigue and cog fog I get.
- I worry about my housing situation; we’ve been told that a stairlift isn’t right for our house because it cannot accommodate all the steps to the bathroom and my bedroom. We need a bungalow, but our house will not sell, and bungalows in our area are so expensive. Would we even be able to afford one?
Importance of Sharing
These questions and concerns seem to be swirling around my head a lot at the moment. I don’t know the answers to any of them. However, I can tell you that the opportunity to talk to other people with MS during the recent retreat was MS-life -changing. Just knowing that others are going through similar experiences helps. They understand about living in a constant state of uncertainty in a way that other people may not. And, okay, we don’t have the answers to what may happen and how our lives may change in the future, but at least we have each other to reach out to to share that uncertainty.
Holistic health care
The retreat made me realise how important holistic care for people with chronic illness is, focusing on both body and mind. Having the opportunity to talk to those who ‘get it’. Sharing what helps us deal with this. People without a chronic illness, like my sister-in-law, who went out of her way to learn about my life with MS and what may help, are worth their weight in gold. They listen and act unselfishly. I only wish that everyone with a chronic illness would have the opportunity to do a retreat like that at least once. Living with the uncertainty that a diagnosis of chronic illness brings is a lot easier if you can share it with others.
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Just wanted to share one part of the retreat that really got me thinking. As we were saying goodbye to all the others who took part in the retreat, one of the women with MS said to me that she wasn’t scared as much as she had been about her MS progressing. I was the only person using a wheelchair at the retreat, and she said that seeing me taking part in everything to the best of my ability, whilst still being friendly and bubbly, and as independent as possible, made her think more positively about what is to come. I loved hearing that; in a small way I helped to ease some of her uncertainty about the future.
‘Til next time,
