Blog 4

Why me? Why NOT me?

Hello again and thank you for reading the Ogg-Blog. If you are joining me for the first time, previous diary entries can be found below. Again, we’ve had responses from all over – thank you! Some people have told us that it is difficult to leave a comment. I have a suggestion - see later! 

In the last few days in Scotland, of course, we had the wonderful news of government legislation that will entitle people with voice loss, access to the necessary communication technology. There is a positive feeling in the air that more people are now aware of MND, really care what happens and are prepared to support MND in a variety of ways. Thank you for your support, whoever and wherever you are and whatever form it takes!

The theme of this blog is basically personal / mental well-being. Or as I like to think of it -         'The Inside of my Head.' As we know, MND is a number of different conditions and is highly individualistic, affecting different people in different ways physically, at different times during the illness and at different rates. But regardless of the type of MND, you still have to decide how mentally YOU yourself will deal with it. Of course, I can only write about how I am, how I feel, how I'm surviving.

Coping Philosophy                                                             

In the Dark

Of course, there’s no denying that, for us, the first weeks after the diagnosis were, at times, dark days. And not just the first weeks. I went through a whole range of emotions and stages. With hindsight, I suppose part of it was a kind of grieving for the life I would never have again. I felt angry, sad, despairing. You name it, I felt it. MND makes your emotions very volatile anyway. It's part of the condition, so crying was all too easy. And some days it still is! We had to be strong, but we had difficulty at times finding a way ahead, a way of facing up to the condition. We didn’t want to be in denial, although that was a tempting place to be! We didn’t want to just let it happen. I suppose the philosophy I arrived at is quite simple and it developed as the result of a family holiday we had booked.

Finding my way...     

                                                           

We had rented a house by the sea, big enough  to accommodate the whole family for a week. Daughters, sons-in-law, grandchildren and, of course, us! It was booked before I got my final diagnosis. We decided cancelling was not an option and although it was a hard week in many ways, it was a wonderful week as well. We had such laughs amid the tears. It took me to the place I needed to be in my head. Yes, I decided that there was still a way of coping. 


In the end, I think it’s about not letting MND define who I am. 
I am determined to try to define MND in my own personal terms. 

You need to look at every day as a fresh start, a new day. If I have a bad day, when tiredness, impatience or frustration can take over or I'm faced with a new problem, I need to put it behind me. Life now must be about finding solutions to these problems and, if possible, finding some joy and laughter in the adaptations we have to make. It's about living in the moment and living for each moment. And it's about not fearing the future, because it hasn't happened yet.

Shining examples

And of course, there are some tremendous role models out there. Gordon Aikman, who is courageously fighting the disease and has very successfully persuaded the government to make legislative changes that will benefit MND sufferers in Scotland. Lucy Lintott who has raised over £100,000 while living with MND. And daily, as I surf MND Scotland and other websites you come across other people finding their own way, their own courage, their own philosophy. In Scotland, Alison McDonald, a courageous young mother of an 18-month old child said recently that a positive mind-set kept her strong and fighting. And on the other side of the world in New Zealand, Eco Yanaga used to run half marathons for MND. Her condition has now worsened, so she thought “Well, I suppose I can still fall”, so she did a sky-dive instead to raise funds. Quiet determination. Courage. Positive thinking. A “let’s just get on with it” approach. There are so many wonderful stories out there. It would be so good if we could get better at sharing them. See later.

Family and friends  

I know I’m very lucky not to be facing this illness alone in my day to day existence. I’m not sure how you would cope without another half – husband, wife, partner, friend or carer – being around. Sure, your relationship changes when illness strikes, but the strength of our long relationship (nearly 50 years!) lies in teamwork. Of course, The Boy has had to undergo a rigorous re-training programme, and not just in the kitchen as I think I mentioned in an earlier blog. But it’s the fact that you are facing the situation together. We work together on so many daily tasks and can still find opportunities to laugh at situations which are perhaps in the end not that amusing. Arm in arm through life. Now stronger arm in arm through illness.

Immediate family too provide such wonderful, unconditional support and we try to maintain our normal links with them. Our two daughters have been such a strong, unfailing presence; a bit of role reversal in operation - offering information, advice and, best of all, their love.   Our grandchildren are, of course, a source of much happiness. Their innocent lives continue as normal, providing excitement and laughter. And what is reassuring is that - young as they are - they simply accept the facts of my illness as being a natural part of me. The wheelchair, stair-lift, voice apps etc are just incidentals, which they have simply and naturally dealt with.

On the day of my diagnosis, one of the lovely nurses said to me, as I was leaving “Good luck on your journey!” And I would add finally that without friends, this illness would be much more difficult to bear. So many of our friends are walking alongside us on this journey and they will never know how much that means to both of us. They’ve supported car boot and garage sales (getting out of their beds at an ungodly hour to secure a good pitch!), taken part in Fun Runs, raised funds in other ways, organised barbecues and recorded their voices as part of the Voice Bank project. Others, not so close, have kept in regular touch by email or phone and that too has been good for us. Quite simply, they are there for us, when we need them.

I have tried as far as possible to maintain my normal social involvement, which again makes for a sense of normality. Having people for a meal has changed into afternoon drinks and nibbles. Girls’ nights (will we ever stop calling ourselves girls, we're all over 60!!!!!!)are still boisterous as ever and for these few hours, life feels just that bit normal again.

A final thought....                                                                              

So to some final thoughts about well-being in the face of MND and how to support it. A number of the responses to the Ogg-Blog seem to indicate that, despite all, there can sometimes be a feeling of isolation out there. But on a more positive note, people are also very willing to share the solutions they have found to the problems thrown up by having MND.

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What I’m wondering is as follows. Suppose we try to set up a Facebook group uniquely for MND sufferers and their carers and families? It's been done elsewhere, for example the US and New Zealand.  Its aim would be quite simply to care and share. To give people the chance to be a virtual group, supporting one another and offering hints, tips and ideas.

As yet, we are still planning the best way forward, but as part of the thinking, I would love to hear your ideas out there. Is this worth considering? What would you see as its purpose? Can we go international? To this end, I have shared my email address below and I would be delighted to hear from you.

Please don’t hesitate to contact me at

lizogg196@yahoo.com

Keep well and keep reading
 Liz                                              

Posted 14th March by Liz Ogg