We woke to the fact that the suitcase was on hold, this clearly didn’t go down well with Liz, and she was well restrained to be fair. First breakfast then down to the pool complete with hoist, inflatable crocodile, rubber ring and Jet Ski. Once installed Thelma and I embarked on what ended up being a two hour lift ride. We went to see our new friends at guest relations to get them to ring DHL, (dump, hide, lose) to find out the problem? We needed to fill another form in, ok so they emailed me the form. It needed to be printed so of to the room to use my grid pad (eye operated tablet) to forward it to the hotel. Then back down to get the form, then we realised the size of the task when the form wanted to know the exact contents of the case, oh shit. So asking Liz wasn’t really an option as she can’t remember anything but facts you will never need like the Latin name for a daffodil or something. So best foot forward, 14 dresses, 4 bikinis, 5 shorts, 6 tops and bras and knickers, that should do it. Back down to scan in and email back to me. Surprise! Back up to email it off. So down to the pool and lunch. Whilst in our favourite lift I asked Thelma how she was enjoying the holiday, her response was “the view from the lift is great”. Over lunch and discussing the antics Liz mentioned her hair dryer and strengtheners, we failed to mention them, well the response was to the effect of I will be buying new ones if they aren’t there.
The rest of the day was fairly normal with the odd request for a tracking update and when will it be here. At this point we started to enjoy the holiday with a glimmer of hope the suitcase would arrive.
As the normal thing to do have become to check the tracking, it arrived at Istanbul airport, instantly will it be here today, in true honest style I answered, doubt it. What we going to do about clothes? I said we will have to go to Belek, so that meant a walk of 30 minutes in 35 degrees. Given what the men can be like there, I wasn’t going to let Liz go on her own. We obviously weren’t going to leave the girls or take them, so of we went leaving the girls with Thelma. It was to be a game of chicken with the added bonus of fry till you die. Chicken was simply their pavements are a foot high with no drop kerbs and rules of the road are simple, everyone for them selves. If that wasn’t enough there was the small issue of battery power, would it last? The game of chicken went well with buses beeping and flashing their lights at me, weirdly enough they didn’t have windows. Belek was in site, just a cross roads to navigate, go for it, shade was in sight. I have to say we made it however the heat had taken about all my energy and it doesn’t help when I don’t sweat, fabry’s disease. Main aim was a bikini however I did say it would be a good idea to get some essential items in case the case didn’t arrive, I was out voted so it was just a bikini for Mrs optimistic. It was long before we found such an establishment, what a surprise, step in to the shop so of Liz goes with smiling shop keeper right behind her, now would have been a good time to do the watching you thing from meet the fookers but as my arms no longer work and the best thing I could do was take a run up to the door and launch my self through the door hoping to land on him, I didn’t see the point in attempting it. It goes something like this. I’m looking for a bikini, may I help you, do you have a female colleague? (Wtf, the guy doesn’t speak English) Whilst Liz offers bikinis up to herself. Then he offers a kiss for discount, oh dear. Mate only if you knew my wife is the Queen of haggling. Trouble is Liz is size 10 bottoms and an over the shoulder bolder holder on top, meaning he is going to take two bikini sets to make one. Then he offered to put it on for her, nearly time to launch, referring to me he asked if i was her brother, that was soon straightened out, then his English came to life with madam you have big tits. Fortunately Liz had the one she wanted so haggling got it down by half to £40, not cheap but I think she had had enough. By this time we were ready to run the gauntlet again so the same in reverse only it was hotter and I really was struggling. You will be pleased to know the battery did well, however Thelma on our return thought the worst and considered it might be the straw that broke the camels back. As if that all wasn’t enough both girls had colds. Then after the evening show it’s time for bed, oh what is this? A locked bathroom door and no one is in it. Call to reception and Mr Technical arrives with pliers and screwdriver to break in, but all is well because Liz says he is fit.
As it was now customary first thing to check the tracking I awoke to the news that there was a problem with customs but no idea what. You guessed it, breakfast followed by a morning ritual at guest relations. The problem was they were querying the £65 value of the contents. Long story short, if the value exceeds £75 then you need a special code so this was easier and as Liz only does charity shopping it was probably only worth £20 anyway, love you baby. So we managed to get guest relations to convince them that it was all used clothing for a holiday. Then you would not believe it, we had a normal day and as the following day was Sunday and everything is shut we had a normal day again, loving it, so we get to miss a day.
As title suggests I have decided to do this post in diary form, but before I start a little introduction.
The two weekends previous we were away, the first was at fully charged at Silverstone and the second we went to a concert at the O2 in London, pre booked before the holiday. Health wise I was not eating due to lack of appetite and been tube feed but drinking.
We were 1.5 hrs late setting off as you do if you’re the Liversidge’s, so of course there was then an hour delay the on motorway, so that left half hour to unload check in and to get to the gate. Oh but we appear to be a case short, it’s still in the lounge some 120 miles away and no time, that’s no clothing for Liz. The pre arranged assistance was no where to be seen, so much for forward planning, the meet and greet parking guys were great at stepping in to help. Luckily for us the plane slightly late. I had pre ordered the Eagle two hoist which I had proof of, it was at terminal one but we were at terminal two and delayed take off by one hour, we then used the time to arrange DHL to collect the case on a two day service at a cost of £167.86 which I didn’t consider to bad. Finally we boarded, but the flight crew were amazing.
It doesn’t stop there, we arrived one hour late which is fair enough, there was no pre arranged assistance so eventually we managed to obtain some, why would you need assistance? Take a look at the picture, the girls shared a case and we had one each the rest was medical equipment.
With me not eating Nutricia my tube feed company had my food shipped to Antalya airport ready for us to collect. Err nope; no one knew anything about, surprise surprise. Getting any help at one in the morning wasn’t going to happen so we had to leave without it.
Ideal time to explore the hotel you’d think, well for Thelma and I the breakfast restaurant was about the extent of it. Liz and the girls stayed by the pool and as the hotels shop only offered €110 bikinis, Liz opted to swim in her underwear, unfortunately no pictures were allowed but she carried it of well. Meanwhile I and my partner in crime Thelma set about the great peg food hunt. First port of call was guest relations to enlist a Turkish speaking person. After lots of words I didn’t understand it was established that I, meaning Thelma and I along with our passports and visas would have to return to the airport to collect the feed. Turkey doesn’t do wheelchair taxis so our options were, ambulance at €400 exciting perhaps but not cheap or an airport taxi at €110 bargain. So of we go to the airport, when we arrive no one has a clue where the building is we need. Eventually the taxi driver found someone one who did lots of gesticulating to the driver and it’s of to a completely different part of the airport. Now you may remember they needed me, well where we had ended up was customs, and would you believe it the customs building wasn’t accessible, so yours truly ended up in a hot van with a none English speaking Turkish taxi driver. You can imagine my sheer excitement and drink was running low, this lasted 2 hours, meanwhile Thelma was busy haggling with Turkish customs trying to explain how the feed is administered and what the pipes are for. Finally they allowed it to be cleared for a fee of approximately £50. So with a one hour trip either way that was 4 hours gone and £150. Might I tell you that I was being peg fed prior to our trip, well about that, that night and for the full duration of the holiday I ate 3 meals a day and dessert; I have put ½ kg on. As you can well imagine I was about as popular as a fart in a space suit.
So here I am again, made another year. Possibly luck has a lot to do with it? Or is it my sheer determination to concur life with this illness. I find it intriguing how everyone suffers differently, how people deal with it differently, and the pure hatred for the disease.
I have to date made some fair achievements even by my standards. I got married to the love of my life, had two amazing girls. Been to see Mickey mouse twice, swam with Dolphins, did the longest zip wire in Europe, climbed a mountain, Abseiled from the Humber bridge and I haven’t done yet. Every single one was done with MND.
My point – mainly for newly diagnosed as other suffers will have made their minds up, life is still worth living all you need to do is want to make it happen. I accept that my outlook isn’t for everyone and there are lots of factors affecting people’s lives. I this year have had 2 operations, sepsis and been temporally completely paralysed (normally I would be what i describe as ¾ paralysed) hell of a difference, 2 chest infections so I wouldn’t say I have had an easy ride but by no means hard.
My aims for this year are to join the mnda board of trustees and set a Guinness World Record oh and a spot of potholing.
Well what a few weeks it’s been, in a nut shell – centre parcs, Beverley Westwood, nominated for trustee with MNDA, getting stuck in promoting the fastest electric wheelchair world record, followed by an exciting few weeks.
Firstly our yearly trip to centre parcs at Sherwood Forest and this time we took our 4 legged friend Popcorn, this worked quite well and wasn’t as bad as we thought it might given she is a puppy. The girls as always loved the swimming activities while dad got jealous of all the fun; no matter if nothing else I was good for bag storage lol. The obligatory trip to the Pancake house was a must where even I managed a full one.
I digress slightly to health matters but since my last trip to hospital in March my appetite has gone. I barely manage one proper meal a day. Thankfully I have my feeding tube which now gives me 1000 calories in my sleep, nom nom. Calories and protein are being added to my drinks but I’m feeling the lack of energy none the less.
Following our trip to the mnda regional conference I have been nominated for a role as one of the trustees, voting starts on 6th June and I believe that there are 6 candidates for two places. Could be interesting given my extreme personality in areas such as MND, not one to go by the rules lol.
11th June sees my induction to the Masonic lodge all been well; this is something I have been looking forward to for sometime. My father, grandfather and step father are or were masons so I am following a tradition.
Last but not least, our family holiday to Turkey. Not the same place as last year but close, I am looking forward to hopefully not shivering for a week or so. The girls love the swimming and the beach and best of all, I get to do nothing and it’s acceptable as apposed to doing the same at home gets me in to bother for being lazy lol. Popcorn is also going on vacation to boot camp for the duration to learn stuff I hope.
If you wish to support my latest challenge or know anyone that does, please donate here:
Finally we have nice weather, or am I dreaming lol. BBQ’s are here and maybe it’s Pimms o’clock.
I have decided to do a little test, to see if people actually read all my blog post, so keep reading. Since my last blog believe it or not we haven’t done that much although we have covered some miles. Last weekend saw our regional mnda conference which wasn’t so regional as it was in Kendal. The most exciting part for me is the research part, gives an insight into new possibilities. I did however manage to momentarily fall asleep during part of it, it was a long drive. It’s always great to talk to new people and network lol, apparently that’s what it is called now, I prefer make new friends. Oh by the way amazing suede and carrot mash. So amongst all this we found out 2 trustees posts have come up, so I have put myself forward. Originally I had thought that Liz would be great at the role but she suggested me, initially I didn’t like the idea but then after giving the idea more thought it made sense, raising awareness and having potentially an input into the mnda no matter how minimal could help someone and that’s what it is all about. Who knows I might have a good idea, no comments please. However if you are a member of the mnda and would like to vote for me I would greatly appreciate the tick, on line or on paper. Speaking of good ideas!
Another mileage hungry journey took Liz and me to Derby, where this picture was taken.
The purpose of this journey was to meet my new friends from Indra, who are they? Jay and Dean, these two gentlemen are part of a company who have agreed quite excitingly to help me with my latest challenge. Now I haven’t mentioned what the challenge is as yet because I wanted to make sure it wasn’t pie in the sky, simply it is a Guinness world record for the fastest electric wheelchair in the world over a standing mile. I told them the speed needed and that wasn’t the bit they were interested in; it was the record I wish to set. Now obviously I don’t really want to say too much about the speed but it’s faster than you’re legally allowed to drive. Why you say? Why not I say. Speed is something I have always loved, whether it is 2 wheels or 4, skis or anything else. This is a chance to be the first at something and be recognised for it, giving the girls even more of an idea as to who their dad really is.
Right back to the normal stuff, bank holiday weekend saw more horse riding and beagle training. Popcorn is coming along great but she as mad as her owner Poppy. We took her on her day out to the East riding country fair in Driffield, the weather was great and Popcorn loved it meeting all kinds of other dogs. We all had a fantastic time and even tried some activities. Needless to say we were all wiped out.
Still we had enough left to go for a picnic down behind our village and have even more fun. Even carers get a free ride!
Well is this the start of some nice weather? If so it will go blog crazy as the Liversidge’s will be out everywhere in search of fun.
Health update – still here lol, lung capacity is static and so is my weight despite lack of appetite and the odd feed in my gastronomy tub. The bed saga continues due to the simple fact people can’t deliver what you ordered. A visit to Sheffield mnd care centre saw me fall asleep during a survey complete with snoring, think I was a bit honest. My voice continues to hold up all be it being on its last legs.
That brings me nicely on to the Hornsea 3rd marathon put on by the Hornsea rotary club. I was asked to open the marathon which I did by feebly lowering a union jack flag to accompany the official race starter with his air horn. As well as starting the race I took part along side with my own Marie curie nurses, my wife Liz and a few supporters. We had a cunning plan to avoid being last, we diverted down a green lane which suited my four wheel drive chair however not my neck, I had to wear my trusty neck brace for this bit. I came in 1h 28mins later. The whole day was a great success raising over £4500 for Marie curie thanks to the entrance fees of over 400 runners going towards the total. I would like to complete the whole event next year if possible so watch out for more antics.
Popcorn had her first proper outing this weekend in the form of East Park, the beach was on the agenda but my four wheel drive chair had a puncture so that stopped that. Popcorn appeared to enjoy the girls showing her round and introducing her to all manner of other dog’s even fellow beagles.
The rotary club disability games have come round again, this time in Hull at Hymers College. It was as always good fun and I had a chance to shoot again with the help of an instructor and technology, but still the trigger was pulled by me when I felt the shot was good. Unfortunately due to elf and safety the girls weren’t allowed to take part. I did win the electric wheelchair dash. Yes that is Lord Prescott presenting the trophy.
Just to round things off, i got out with the drone.
So welcome to our new website. Hopefully you will find it much easier and more mobile friendly. Please feel free to comment on your thoughts and suggestions. Our new site has been created and built by Grant Hood who is the husband of one of my carers; he has done it for a few Sunday dinners and drone flying. We can’t thank you enough for giving up your free time to help us.
My previous post mentioned an operation well we got there in the end is all I can say.
After waiting 6 hours to get a wrist band they finally sorted it on the way to theatre. Nearly forgot they lost my notes and found them at another hospital, as a result of this they took a brief medical history! I have two life limiting illness, it’s never going to be brief. We were meant to see the anaesthetist prior to surgery and as we hadn’t Liz wanted to come down to surgery to see what the plan was. Brief notes appeared, MND and fibromyalgia? Err no, Liz asks to look and sees Fabry’s crossed out and fibromyalgia written in, so then this is debated. Next up the anaesthetist, he knows none of this, refuses sedation on the grounds it could turn into a general anaesthetic and they may not get me of ventilation and have to perform a tracheotomy, with no ICU bed was available. In pops the surgeon, I have never fitted a portacath under a local anaesthetic. Oh well first time for everything. 30 minutes in and should be done , one hour in pipe won’t fit, lots of hard pushing on a weak chest, Liz is asking questions, 30 minutes later and into recovery. I became unresponsive and paralysed, oxygen saturation 90% and falling, I was aware of what was going on, I know how you feel Simon Adams. Liz asked for my ventilator, still in surgery and when it did arrive no one but Liz knew how to use it. Guess what next, the machine appears to have a fault and is breathing far too fast for me, no way to tell anyone, Liz knew something was wrong so checked the machine but it needs a specialist to unlock it and alter it. Meanwhile after 45 minutes I had gained the ability to groan slightly, not great as no one knew what I was saying, not any different to normal then, over the next half hour my voice came back and movement. No one knows why this happened but I have done some scary stuff but this had me seriously worried. The event started at 3.30 and we got back on the ward at 9pm. I kid you not but you couldn’t make this up.
Popcorn is now fully installed and being just as much a nuisances as me, although I don’t chew things. The girls love her to bits and won’t leave her alone. The garden is getting the dog proof perimeter treatment. She fits right in lol.
Night care is finally happening with 2 new carers and our 18 month battle with the CCG over a new bed has been won by Liz and is arriving on Monday.
Friday was Easter school church service, which is a laugh with our vicar and Archbishop Sentamu, which was a surprise and great fun. We also got invited to our local church for Easter Sunday with an 8.30am start, hmmmmmmm but there is a bonfire to symbolise the sun rising and oh yes bacon sandwiches, count me in and I can get there in my wheelchair as it’s at the road end.
Saturday the school holidays, joy. Only kidding, first off leisure world Bridlington, thanks to Julie my carer. Her birthday present to Poppy was clip n’ climb followed by swimming and water slides. The girls had great fun as did Liz and Julie. We don’t have much planned for Easter but then again this blog post all happened in 6 days so it’s unlikely to be quiet.
So a fairly quick post to say I’m off to hospital again, this time for a portacast, a small device near my shoulder so they can get a line into my veins as they are rather poor to say the least. It will also make my fortnightly infusion a lot easier.
That wasn’t my reason for this post through. In my last post I mentioned Poppy getting a puppy and I asked you all to hold that thought. Well here are my thoughts behind why I pushed for it, right or wrong I may never know. For as long as Poppy has been talking near enough she has wanted a dog and basically 3 years in a 5 year olds life, well I don’t need to say it. Everywhere we go and see dogs we have to say hello, as long as the owner allows it. Then there are my thoughts on this, Poppy won’t remember me walking or picking her up, putting her to bed and so on and I feel exceptionally guilty for that, letting her down. This in no way is isolated to just Poppy; Lilly does remember these things but not amazingly well. Popcorn as she has been named is something I can give the girls that they can remember me for. Not just a book, picture, video or even this blog but a living breathing creature. I guess in a way I can live on, first we need to do what our site says, making memories . Having said this I am not planning on departing anytime soon. Besides Thelma one of my carers tells me she wants to finish paying for her sofa and wants a new car, so that’s that