Blog 10

Hi All and welcome to Liz Ogg’s Blog 10

For those of you new to this, this is a long-running MND blog – a bit like a diary – and can be read from the very beginning in Blog 1, so you can chart my “MND journey” - if you feel strong enough, that is.  It’s been a few months since the last issue – mainly because of changes in my condition and difficulties with medication. I get tired very easily now, so sitting at the PC is no longer an option. My left hand is no longer functioning well, so using the i-pad or even holding the phone is more problematic. And holding my head up is much more difficult too.

Where's George when you need him?

Because of all this, I had advertised for a personal secretary, hoping that Poldark (Aiden Turner) or Lord Melbourne (Rufus Sewel) might apply. I had even decided there would be a scything demonstration as part of the interview! (Sorry, this will only make sense to British TV viewers).  I would even have settled for George Clooney on a part-time basis. But no such luck. So I’m stuck with The Boy, who is now doing my clerical tasks - and quite well, thank you!. I suppose he might look like George in the dark with a 40 watt light behind him, but beggars can’t be choosers in the end.

Yes, things have changed quite a lot in the last few months...

Food, glorious food!

Firstly, a few months ago, I decided to give up eating by mouth – it was just getting too hard work and also I just wasn’t getting enough nutrition. I’m now using the bottles of blessed supplement, alternating between the fibre and non-fibre versions and all delivered through the peg. The Boy tells me they are very sweet, vanilla-flavoured drinks, but in the end, I wouldn’t know. In addition, I no longer have the strength to operate the syringes, so The Boy assists me three times daily and I suppose it gives us some quality time together, watching the TV, box sets etc. Unfortunately, we have different tastes, but for the moment he just watches what I watch! And he has picked up a few hints and tips on scything!

I haven’t been out of the house now for a good few months. Nor has The Boy. We can no longer make regular doctor and hospital visits, so luckily, mostly, the professionals come to us.  Family and a wonderful group of friends do the shopping for us and help with gardening etc, if we need it. Now that I can no longer move about, I spend most of the day in my dual motor recliner chair and yes - watch TV. Last week, the chair suddenly stopped working and I had to stay in bed  for 24 hours until it was repaired the next day. You don’t realise how fundamental a piece of equipment can become to your wellbeing.

Because of my head position, reading is no longer possible and I really miss my books a lot. Friends pop in regularly to chat, but it needs to be at a fixed time to fit with my routines and I find that one hour is just about enough. I definitely get tired much more easily now.

Help in the morning!

We now have a care team visit each morning, to help with washing and dressing, which gets us off to a good start - although an early one! Although the team personnel changes, there is a real sense of continuity. All of them are helpful, efficient and friendly and have a good sense of humour. It’s also a relief to know that, if we need the support, it can be flexibly increased. A recently installed alert button system means that any emergency will be dealt with 24 hours a day.

Breathing

I’m also getting more periods of breathlessness now and the NIV (Non Invasive Ventilation) machine is a god-send. I often have a nap when linked up to it and it definitely evens out and assists my breathing. At first, I thought it would be difficult to wear and might be claustrophobic, but in fact, it is comfortable and does assist with sleep, although we rarely manage an uninterrupted night. 

The Boy says the sound of my breathing with the mask on is soothing – quote “a bit like being in a seaside B and B, with the window open, listening to the waves on the beach…” However, when I yawn with the mask on, it’s quote “like a 747 landing on the bedroom carpet…” I also manage to stage some remarkable “yawn-fests” too – possibly linked to the condition?

Bye bye bed...

A few months ago, with regret, we packed up our lovely superking-sized bed and I now have a single hospital bed. For the moment, we’re not using the hoist, ever since The Boy knocked himself out on it one morning in the dark at 4.00am! It’s great knowing that I can now alter my body position and can sit up without a mountain of pillows when I want. But of course, we so miss being together. The Boy is now in a single bed, just a short flight away. He’s luckily a light sleeper, so for the moment, I’ve put away the box of bells, whistles and hooters designed to attract his attention. Apparently, he will immediately hear the click of a clock or the scrape of nails on the metal bed rail!

The Fall!

Last week, The Boy staged a minor fall outside the house and ended up in A & E with three X-rays on his wrist and hand. This is to add to his A-Z list of injuries, including a snapped Achilles tendon while doing the Dashing White Sargent in Vienna and a 95% torn quadricep the week before Christmas 2012, caused after sliding inelegantly on a marble hotel floor. With his lower arm in an attractive splint, he has had major problems helping me transfer, so we had to increase our daily care team visits to four. All now seems thankfully to be on the mend.

MND Together, the Face Book page, recently welcomed its 150^th member and is doing what it says on the tin: bringing people together, affected directly or indirectly by this disease. Long may it go from strength!

All in all, our life is now lived in the slow lane, but we are both grateful for what we have. As a team, we treat each day as a new start, work together on the problems which inevitably arise each day and make the most of what the day brings. At least, we're doing it together! 

Tomorrow, we're having a bio bidet installed. It's amazing what you get excited about now! Can't wait...

To anyone out there reading this - MND patient, family member or carer – good luck on your own MND journey. Our thoughts are, as always, with you.  

Keep reading and keep well!

Liz x