It’s been a strange one since I left you last night. After going to bed at a perfectly reasonable hour and after taking all the necessary medication, I found my mind filled with all manner of busy thoughts. There were all usual thoughts about what to write in the blog next, how we can get more publicity, what day it is, and all the ones I spare for the people I care about. However, unusually over the last few months but more usually the last few weeks, came thoughts about the loss of time, unfairness and the future, or lack of it.
Despite the above, I woke up at an equally reasonable hour, and shortly there after Louise arrived for another fun-filled and very cleansing bathtime. Louise and I spent our quiet time talking about Oscar, toddler’s attitudes and houses in Scotland. After my bath, I had visits from my son and four very good friends. Nothing unusual or a negative so far, right?
My rather hectic weekend has been followed by a somewhat lazy Monday afternoon. My mind was so busy chasing around the things I had to do this week that it kept me awake until 2am. This resulted in me sleeping until 11.30 this morning when mum arrived back from her weekend at home.
After lunch I was treated to a session of Reiki which seemed to fix a niggling problem in my throat, as well as leaving me very relaxed.
Fascinating fact 1: Did you know that Louise and I have both been attuned to practice Reiki on ourselves and others? I was a sceptic too until I tried it. There’s definitely something in it, you should have a go.
The annual London Marathon is not far away, on the 26th of April 2009. If any of you out there are looney enough to think of running a marathon without having to be chased by a herd of really upset wildebeest then we have a polite request to you all. Our request is obviously to make the Motor Neurone Disease Association your designated charity. Unfortunately, the public ballot is now closed so hopefully our publicity campaign reached enough of you in time. If not, please remember our story and register 2010.
All my love,
The Plattitude was now reaching a large number of readers, enough for the MND Association to ask us to put out this message.
In 2010, another fit, young and healthy man was diagnosed with motor neurone disease. Mark Maddox, a father of three and former professional footballer, went against the advice of his doctors this year to become the first MND patient to complete the London Marathon. Mark had to enter the marathon without being able to train at all due to his condition and unbelievably crossed the finish line in 6 hours 40 minutes.
If Neil had known of this man’s efforts he would have been shouting about it to every corner of the globe! You can still support Mark at his Just Giving page.
...but full of smiling faces which made it all worthwhile.
I have had the pleasure of numerous visitors today which has left me completely exhausted, so if you don’t mind I’ll be brief and return to the Sopranos which doesn’t involve me speaking.
The day started with a visit from Paul and Jo, who had only driven from London last night, returning from their travels around Australia and South America. Then Peter, Ann and Eleanor, former teachers of mine and their daughter – who brought with them some rather amusing photographs of my brother rather than me for a change. I will post said photos on the blog as soon as I get home! Next Brian and Gill arrived having driven from Edinburgh to spend a few hours with me before driving back (this was all too rare a pleasure as we seldom see each other since I moved to London). Hot on the heels of the latter, in fact overlapping for some comic moments, came another great friend Stephen and his mum Dorothy (I found myself reaching for the invisible wine glass and ready to be Murphied!). Next came my brother-and-sister-in-law and children, Douglas, Sara, Mairi, Hamish and Eielish (I’ve no idea what order the letters come honey sorry!). The children each brought me a little picture to tuck up with all my other photographs and mementos. To top off the afternoon, Louise and Oscar paid me a visit (although it has to be said that all they left me with was a pungent smell, thank you Oscar!).
Very little has happened since my last entry. I couldn’t get to sleep very easily and so was given something to help which has left me a bit groggy. The reason I couldn’t get to sleep is because I was looking at my photographs and thinking about all of my friends who have given up so much time and effort to care for Louise, Oscar and me. I thought I feel the need to acknowledge what they have all done so willingly with something more than a limp-wristed handshake or a stubbly kiss. I thought they should each have a letter.
It’s true, I’m about as clean as I’ve ever been thanks to the efforts of my multi-talented wife and the team of staff from St Michael’s. I have today had the pleasure of my first bath since my first visit to the hospice about three months ago. Now please don’t jump to conclusions and assume I have not had my daily ablutions by other means, because I have – the super-efficient palliative care team have seen to that. But to have a bath has become a truly heavenly experience for me despite the to-ing and fro-ing required to get there. Let me explain.
I’ve been meaning to write this post for a long time now. Every time we’re contacted by others affected by MND I feel terrible for not concentrating on it sooner!
MND can move so fast that the services find it difficult to keep up with providing equipment. It’s not only tempting but often necessary to just spend money to solve problems. Sooner or later, you find yourself living on benefits in this situation, it’s impossible for either of you to carry on working, so I wanted to show our list of good money spent versus bad. We also bought a lot of things that I consider to be creative solutions to our problems so I wanted to publish this in the hope that it will help others cope. I’m sure a lot of these things can be borrowed. I’ll try not to bore everyone with too much explanation!
Good money spent
So, in no particular order (cause that would take me all night), good money spent…
Wall Calendar – very important, many services to coordinate (and friends!)
Suction Pull Handles – we live in a rented house now, so we couldn’t drill pull handles in to the walls. Social services are not allowed to give you the suction ones cause of health and safety red tape so we found them in Argos [a well-known online and high street retailer in the UK – Ed.]. They were OK, but you do need to check them regularly, Neil had a nasty fall in the shower once and I got the fright of my life. They were good up to the point he had to start putting his whole weight on them.
Hello there everyone,
I’m getting a little more settled here at St Michael’s. I spent most of the day yesterday in a complete haze and yesterday evening sat with my mum watching, wait for it, Coronation Street followed by Coyote Ugly! Fortunately Guinness and Port and lemon seemed to take the edge off it.
I apologise for the shortness yesterdays post, this was due to a number of factors. Firstly, I was thoroughly done in. Secondly, my mum has broken a wrist and has a cast on therefore it took about three half hours for her to push my chair across the carpet because my network cable wasn’t long enough! Thirdly, between the aforementioned fantastic broadcasts I needed the toilet – I hear you saying ‘No Neil, No!’ but I say if we are sharing then we are sharing. Basically, it involves three or four members of staff helping to remove my trousers and fit the sling for the hoist. The straps are then looped and fit it to the hoist following which I am lifted into the air so that my backside can clear the bed, upon which a plastic commode pan is placed for my use. The same applies in reverse except for the fact that I have to be lowered on to the bed in order to have my trousers lifted which means being unattached and reattached to the sling and hoist. This process takes about a minimum of 20 to 30 minutes with the professional staff at the hospice, so again you can appreciate the strength it takes Louise, my mum and all our other nonprofessional friends who have, pardon the pun, mucked in. All are to be applauded.
Hi there guys and gals,
Well here I am, deposited, fully installed, fully settled, fully satisfied, and fully ventilated. Back for another two weeks of basically being spoiled rotten at St Michael's Hospice, I even get to have a bath and you have no idea what that means to me!
I would love to have another prolonged writing session, which equals me saying something to my computer – it typing it wrong – me saying the same thing again – ditto – etc and so on, but I’m afraid writing this has done me in for the day.
Oh, I nearly forgot an error in my last post which requires correction. The Vectra ownership is solved, thanks you two – they know who they are!
I’ll speak to you all tomorrow, with love,
I wouldn’t say Neil was looking forward to another stay in the hospice, but he certainly knew this time around that there were benefits in going there.
Alas nothing goes quite to plan, my rendezvous with Steven Seagal went arse up mainly due to the fact I fell asleep after being too tired from writing the post telling you I was going to relax with Steven Seagal.
Ah, but do not despair for me because help is at hand. Tomorrow, or today for many of you, I return once more to the peace and quiet of St Michael’s Hospice in Harrogate. You may remember that I viewed my last visit with trepidation. I did not know what to expect and it is usual to fear that which you do not know. Second time around holds no such fear. This is because I am taking my mum with me.
This time, I am taking a whole new set of thoughts, ponders,worries, and downright traumas with me. Bringing mum may have alleviated the concern regarding accommodation, but I still brought a suitcase full of things I have to sort mentally, the easy stuff like bank account names being transferred, TV licence, who will take my old Vectra.
Then there’s the stuff to sort emotionally. Seems to be popping up a lot these days and at random times like because I see a pine cone or Oscar does an unusually loud fart. But of course they are not at all random.
It’s been a really intense weekend as we have been filming for about six hours on each day, almost constantly. I think that this may have been a big ask before I became this vocally challenged, okay maybe not but I might have been a bit tired. It takes quite a lot out of you, too, on an emotional level. We are trying to let other people know what it’s like to have motor neurone disease, not just the physical challenges which become more and more difficult as time passes, but also the impact on family and friends who all become instant carers. We’ve also being attempting to describe the more subtle emotional and physical sensations I am now feeling.
The roller-coaster ride of emotions that was this weekend has left me somewhat shell-shocked. When I was asked what I miss most about each pair of limbs, beyond them actually moving, it took me a few minutes to decide what I'd like doing with them. Things like holding Oscar, holding hands with Louise, playing guitar, holding a book, drawing, fixing things – and these were just a few for my hands. For my legs, beyond the usual walking, I used to go running, riding a motorcycle, driving and elephant-riding (okay I know it’s not an everyday thing but it is a thing nevertheless!). I felt shell-shocked because I had never felt the loss of my physical abilities before then. I think I have simply accepted my fate and adapted to each loss as it appeared. I still think that acceptance and practicality were the right route for me, but I don’t think I was ready to confront them again in such a raw way.
I just thought that you may be wondering why I am so quiet. Well, this is just a quick note to let you all know that nothing has gone awry at our end. We are in fact filming a documentary about life in general and life with motor neurone disease in particular. When completed we hope that it can be shown whenever and wherever possible in order to continue raising the profile of MND.
I will do my best to leave another post later on today. I say I’ll do my best because yesterday was completely and utterly exhausting.
‘Did it feel intrusive to have a documentary being filmed while you were going through such a difficult time?’ is often the first question people want to ask of me when they learn about I AM BREATHING.
Hi there guys and gals,
Your support since my last post has been incredible and is massively uplifting. I certainly feel that some of the shadows I have been walking in (or rather wheeling in – scratch that – sitting on my arse in) are thinning in places making them feel less ominous, or you have displaced them altogether. For that I am very grateful.
This is a very quick note to Douglas.
Just wanted to say thank you for setting up the Plattitude in the first place. We have been incredibly lucky with our subscribers taking such a full part in the debates and helping raise the profile of MND.
Secondly, I’d like to thank you for nearly bumping me off last night with a heart attack! This may have been preferable, but my affairs were not in order. So thank you for saving the Plattitude!
Since finding out that I have motor neurone disease, I can say that I have had more good days than bad without a shadow of a doubt. It is also the case that the occasional bad day which I have experienced has made me recognize even the slightest good in any other day. I say this as a warning. Today and yesterday were bad days.
A couple of days ago, Neil called me and asked me to make a few changes to The Plattitude. This evening, I took advantage of the fact that the kids were in bed and sat down at my computer to carry out Neil’s simple request. Unfortunately, in my haste to act as a dutiful brother-in-law, I accidentally deleted the entire database of the site!
I was there yesterday evening with Louise as we read the comments on the Daily Mail article. At first, I did feel the hairs on the back of my neck stand up and muscles in my dead arms want to throw the laptop across the room. Then I looked down the list of comments than they realise that the proportion of comments which accused me of being inconsiderate and selfish for bringing Oscar in the world were far outweighed by those condemning such a viewpoint and offering kind words of support.
It also occurred to me, that I have never discussed this issue with you, so any criticism offered is being done so from a position where you are all not in possession of the full facts. Louise has already given you her viewpoint, but as you can imagine our reaction to things like this are quite different, which is not to say either is right or wrong.
It’s the middle of the night and I can’t sleep…
I don’t get much sleep most nights because my husband is dying in the next room. I got less sleep last night because Oscar was coughing and I was scared he would wake up Neil. I can’t sleep tonight because, just before I went to bed, I read comments left on the Daily Mail website about our article and some people took the opportunity to tell us how irresponsible and selfish we were to have had a child.
Hello, I don’t have much time.
You see, I am under the vicious guard of armed spouses and nurses who are under orders not to allow me to speak. The Christmas and New Year period has seen an unprecedented number of visitors and an extreme amount of fun being had, and that this has resulted in my being a little weary today. Absolutely knackered actually, so much so that I could hardly speak this morning. So actually the spouse and nurse combo is probably justified.
Hi everybody! Happy 2009 again!
All of your resolutions decided upon and implemented I hope? I wish you good luck with them all, from the serious to the preposterous.
I decided not to make any resolutions this year, didn’t want to hedge my bets if you know what I mean. I’m just going to carry on doing what I’ve been doing since this all started because, quite frankly, it seems to have brought out the best in me. Things that people have been saying both on and off the blog are incredibly encouraging, and it must be that I am the kind of horse that responds better to the carrot than the stick, as I find myself throwing myself into everything from life at home and family, to plundering every possible source I can think of to further our campaign to raise awareness and funding for MND.