I thought I’d use my platform for something a little different this time. I’ve used it before to shine a light on and dispel some of the strange facts and myths surrounding Autism Spectrum Disorder, and how life on the spectrum affects me on a day to basis.

What I want to do is raise some awareness toward another condition that is very close to my heart, called Ehlers Danlos Syndrome. Some of you maybe aware of it, but for those of you who are not familiar, I’d like to try my best to briefly explain what it is and what it involves.

Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls, but also gums and nails. There are various different versions of it, which is why it’s a syndrome, but it is a very disabling and challenging condition.

Symptoms include:

• Over-flexible joints
• Loose joints that dislocate easily
• Joint pain
• Stretchy and fragile skin that bruises easily
• Soft and velvety skin
• Non-healing damaged skin
• Muscle pain
• Extreme tiredness
• Dizziness
• Increased heart rate, especially after standing or eating
• Digestive problems such as heartburn and constipation
• Urinary incontinence
• Heart valve problems
• Protruding eyes

The signs and symptoms of EDS vary by type and can range from somewhat mildly loose joints to life-threatening complications.

Treatment

There is absolutely no cure for Ehlers-Danlos syndrome. Only treatments that aim to manage the symptoms and the awful pain, while preventing any serious complications.

The reason I’ve shared this information with you, dear friends, is that my wonderful wife, who you all know as Mrs Bob, has got EDS, and I’ve heard so many people say things like “Oh I hope it gets better soon”, or suchlike. While I understand that these people have the very best intentions and aren’t meaning to be hurtful when they say these things to her, it upsets me, and her. It’s like saying to me, “hopefully you’ll become less autistic”.

She struggles on a a daily basis with pain and her joints – especially her knees (which have to be specially taped up to help against dislocation, which still happens regularly. She can on a good day, manage to sleep in bed for 2-3 hours, but the rest of the time she has to sleep downstairs on her recliner. Some days she can’t get upstairs, even with crutches. She goes for regular short walks with a crutch every day, but if her knees are out, she can’t, and this has a knock-on effect on her back issues from a car accident in her early 20s.

She is always in some pain, but still tries to smile, and do the best she can without complaining, even when she knows that she’ll suffer the following day as a result of doing too much. She knows it won’t ever get better, but starts each day as new. I think it’s because she does this that most people don’t realise the daily struggle she and others with EDS have.

So please, spare a thought for those of us whose daily existence can be an uphill battle, that is often invisible.

Stay Safe X

My latest vacation with Mrs Bob was a voyage to explore strange new worlds. To seek out new life and new civilizations. To boldly go where no Aspie has gone before!

Originally, we were supposed to visit Guernsey first, but this was cancelled shortly after we attempted to tender there. The weather was bad and expected to deteriorate, so the Captain decided to “pull the plug”. So, we ploughed on to the next stop on our itinerary, Cork, in Southern Ireland. This gave us a bit more time at sea, so I decided to hit the pool and hot tub with a good graphic novel, while Mrs Bob watched from a recliner by the pool, reading. This was a strange experience for me, starting with getting changed and showering before entering the pool. This is normally uncomfortable for me, but it wasn’t helped when I walked past the sauna and saw a very naked old dude on display like a fish in Morrisons. After that initial awkward moment, I climbed quickly into the hot tub and found that people have an annoying habit of talking to me. Do I look like a freakin‘ people person? I’ve learned to cope with this and worked out how to “people” through working in a pub for the last few years. Still, it’s not my favourite pastime by any stretch of the imagination.

The next day we were on an excursion to Kinsale from the port at Cobh, Cork, and I must admit, the coach trip was very pleasant. The roads and scenery were pretty much like the ones here in south Devon, so we both felt really at home. I also found out that Kinsale was home to Keith Floyd who used to own the establishment I work in back home, so that was a fantastic touch to my visit. Kinsale is a quaint small town with a high street of shops and cafes. We were free to explore, so Mrs Bob found a little back-street cafe with lovely home-made gluten free cakes and huge cups of fresh coffee. Just what I needed! After refuelling, we found a touristy gift shop and Mes Bob went in search of a Christmas bauble for the tree. This is a tradition we have always had – getting one from every new place we visit, so we remember it. I went and sat on a bench as I was feeling a bit headachey, and once the bauble (a lovely metal Celtic cross made for hanging on a tree), we went in search of Taytos.

Taytos are Irish crisps and we had been told we MUST try them if we went to Ireland. Mrs Bob didn’t give up til she’d bought some, but it was harder than she had been led to believe! Once we got on the coach to return home, we checked out the packaging… neither of us could eat them! The salt and vinegar crisps contain both lactose and barley 😳. We tried!

Back on board, we enjoyed sitting on the balcony and watching as Cobh disappeared and we made our way to Dublin. Mrs Bob decided she wanted a drink from the Martini bar, which had a bar made of ice, and it was then that she discovered her favourite cruise drink… a candied Apple Martini! Several times she carefully balanced the very full, very shallow martini glass as the ship swayed, and she got in the lift up to our cabin’s deck! It’s nicer drinking on our balcony than at the bar, apparently.

At dinner, we were sat at a table of 6 for the cruise and we got to know the other two couples really well. One couple were originally from Paignton, and had been on 3 cruises in the last year, all on the same ship! The other were from Quebec, and the husband found it really challenging to speak in English every dinner time. Still, they were really nice and very chatty. Mrs Bob discovered that our very obliging, kind and helpful waiter was called Freddis, and was from Honduras. He had been waiting on cruises for 18 years and this was his last year, now his sons were through university. He looked after us, with all our food issues, so well and we were very grateful to him

In Dublin there were many excursions planned by the cruise ship, but I had personally organised my own trip into Dublin, to visit the Grand Lodge of Ireland. Mrs Bob was happy to tag along, despite having no real interest. After a shuttle bus ride and a fairly long walk, we found it. That Grand Lodge is the second most senior Grand Lodge in the world and the oldest in continuous existence. It is the institution that governs the Masonic Fraternity within Ireland and also in a number of Provinces overseas. This was a very special visit for me, as it was my first visit to an overseas lodge. While I couldn’t tour the temple that day, I was able to visit the museum which gave an interesting insight into Ireland’s Masonic past.

After this, we had a quick look around the centre of Dublin, then took the shuttle bus back to the ship. As we were the only people on it, the driver took us on a covert quick detour to show us a couple of sights, which we were very grateful for.

After two days spent in the Emerald Isle, though, it was time to set sail for colder climes, which meant two days at sea. This was great, as both of us love sea days and I could spend time exploring the ship and taking in some of the activities, quizzes, etc. Mrs Bob joined in some, but I won a medal in one event titled “Are you smarter than a Ship’s Officer?”. Apparently, I am! After all this excitement, I went to eat in the all-day-eat-as-much-as-you-like type restaurant on Deck 14, with a wonderful view of the sea. I found out that they made gluten-free pizzas, so I had one and a nice salad with it (just to feel healthy) and then went to find Mrs Bob and have a rest in the cabin. Then, we went to the inside pool again, for a nice relaxing hot-tub session and a lie-down by the pool with a Walking Dead graphic novel and a podcast. Mrs Bob had her Kindle and settled down with me.

I need to mention the other thing I found useful while adrift at sea was that the TV in our stateroom had some cracking free movies to watch, so we took in a few of them during sea days or quiet evenings, including:

• Solo A Star Wars Story
• Antman and the Wasp
• A Simple Favour

The Upside

I did find that during the sea days with nearly 3,000 people packed on board, my wireless, noise-cancelling headphones came in very useful, helping me to avoid too much noise. When you look like I do with them on, most people will do anything to avoid conversation with me or even getting in a lift with me. Which is fine by me, as I’m not really the most sociable of peeps.

(This is my happy face.)

Anyway, after two wonderful, relaxing days at sea, we arrived in Akureyri situated in the far north of Iceland. It was simply stunning. Not only had we been inside the Arctic Circle (the second time for us) to get there, we had also caught the phenomenon known as the Midnight Sun. This is also known as the Polar Day, where the sun is fully visible for 24-hours, day and night. This is a very strange sensation, and I was fascinated by it. This picture was taken after midnight:

The trip out and around Akureyri was fascinating and beautiful, despite a little rain and being overcast, I was surprised at how warm it was in early May. Amongst other things, we saw incredible landscapes, waterfalls, ancient houses made of turf, an ancient church and a botanical garden. The guide was witty, informative and really made the trip come alive!

The excursion around Akureyri wore both of us out. By the end of the day we were both in some pain and we decided there was no way either of us would be able to do the 9-hour excursion we had booked and paid for the next day, in Reykjavík.

Instead, once we arrived, I spent the day relaxing by the pool and took part in a paper airplane competition! This was much more fun than it sounds for an aerospace engineer and a nerd. Mrs Bob was in a lot of pain, so she rested in the cabin most of the day. We enjoyed some good food and even better wine and spectacular views even from the ship. I also managed to work on some new scribbles, which made me very happy.

Then, it was on to Lerwick, on the Shetland Isles. Once we had set sail, that evening was a silent disco and I had to check it out. This is a fascinating social experiment where a group of people, mostly intoxicated, wear headphones. They choose the music they want to listen to from three channels – 70s, 80s or 90s/00s. They then proceed to dance (and sing – loudly and tunelessly) the night away, much to the amusement of those people who are spectators and can hear their singing rather than the music!

The Shetlands are a fantastic place and, like the Faroe and Orkney Isles, were originally under the control of Denmark. In the case of Orkney and Shetland, this was until 1468, when King Christian of Denmark needed money to pay a dowry. He entered into a commercial contract on 8 September 1468 with the King of Scotland, James III, to whom he pawned his personal interests in Shetland & Orkney for 50,000 Rhenish. Unfortunately, when the Danes tried to settle the debt in 1549, 1550, 1558, 1560, 1585, 1589, 1640, & 1660, the Scots rejected each attempt and refused to give them back, thus causing them to remain under Scottish rule, which hasn’t changed since.

I went on a short coach trip down to southern Shetland, with no stops, and Mrs Bob wandered around Lerwick. We both had fabulous times and loved doing our own thing for a couple of hours, then sharing experiences after.

Once back on the ship it was time to set sail for Southampton, where our adventures had begun. The North Sea was incredibly calm and smooth – almost glass-like with such fog you couldn’t see off the ship at all. It was strangely eerie but also hypnotic. Mrs Bob sat on the balcony looking at it for ages!

We arrived at Soton docks at 0600 and we were up, packed and ready! We leapt into action and left the boat half an hour later to begin the 3-hour drive home. We collected Dog on our way… he was confused to see us and yowled loudly the whole way home, but he soon realised we were staying and he happily took up his favourite cuddle place on Mrs Bob’s lap, after scoffing a bowl of food faster than either of us had ever seen him eat.

All in all it was the trip of a lifetime for both of us. It was wonderful to spend two weeks together making wonderful memories – a real Bucket List experience for the two of us. A massive thank you goes out to Mrs Bob for single-handedly organising the whole thing for us. She is a gem…

Stay Safe X

After some nineteen months two Christmases, many happy hours behind the bar and in front of the roaring wood fire, even being snowed out of the village during the bad weather we had earlier in 2018, I’ve had to call time on this chapter of my working life.

This was a not a decision of my own making, or of the owners of the establishment, but more of circumstances outside of my control. While I’m sad to be moving on from there, the job helped me to escape from a previous job where I was desperately unhappy and treated poorly. I shall, however, take with me some very fond memories and some great new friendships.

Where am I going from here? Surprisingly I’m going to a venue that I applied to 19 months ago and was unsuccessful. The owner remembers me from my interview and contacted me. He wanted someone with my particular skill set, so I went down to speak to him and after agreeing terms and a start date, I’m all set to move to pastures new.

To all my friends, colleagues & regulars at my last place. I’ve really enjoyed my time in the village. It’s now time to close this chapter in my story and invite you to join me as season three begins and the journey continues. Hopefully, I’ll see some of you in the future. If not, then thanks for some great memories.

Stay Safe X

Father’s Day is that one day of the the year where we get a card and some socks, smellies or a beer for our dear old dads and maybe pop round and let them know we’re thinking about them. For those of you who don’t know me, and some of those who do, I wanted to share a little story with you.  So, go to the toilet, grab a coffee and get comfy.  Ready? Then let’s begin.

This story goes back to when I was a young boy – about 9 – trying to come to terms with the fact that my birth father (from now on referred to as ‘Sperm Donor’ – the less said about him, the better) had walked out on my mother, choosing the night before Mother’s Day to go. My mother was trying her hardest to keep things going (and doing a bloody good job), and me?  Well, I was was just about to start the scariest time of any kid’s life: moving to grammar school. After a while, as well as working three jobs, my mother had started to attend a couple of social groups so that she could get out of both the house and work zones, and try to make some new friends. I remember being dragged along to a lot of these events: walks, meals at other people’s houses, etc, and if I’m honest it wasn’t my thing, but if mother was happy, that’s what mattered. What I do recall, though, is one of the guys there who was into running, long walks, music, etc, and who had a couple of kids who were about my age. This guy would end up being around quite a lot over the coming months and, if I’m honest, it was nice to have a father figure around, as Sperm Donor had vanished off the face of the earth.

This man ended up marrying my mother when I was in my early teens.  This was no easy feat for him, as I was not your usual, happy, friendly teenager at all. Over the years we butted heads repeatedly, but even after all that, he has supported me through difficult times, been there for me when no one else was, and stood by me no matter what.  This has extended to my children as well – they know him as ‘Grandad’ and didn’t realise he wasn’t a blood relative until their mid teens. They both had the  opportunity to meet Sperm Donor at a family funeral, but decided that, having watched his behaviour that day, they didn’t want to meet him as he’s not their real grandad.  He made no effort to speak to them.

This spoke volumes to me about the character of this man who had stepped up, taken me on, treated me as his own son and tried to help me, even when I thought i knew best. As a middle-aged man, I now understand how hard this must have been for him.  Then, last year, I had a phone call from my mother to say my dad (I hate the ‘step’ bit – he’s my dad in every way that matters)  had collapsed while playing walking football.  They had had to restart his heart a number of times, and he had been airlifted to hospital. He was in a bad way and needed major heart surgery once he was stronger.  Being a 4 hour drive away from where we live, I  began to realise exactly how I felt about this legendary man.  Yes, of course, like us all, he has his flaws.  None of us is perfect, but I began to think about what my family would be like without him. Fortunately, I haven’t had to find out as the operation was a success and he is back to his old self, for which I count myself lucky every day. I also realised that people like my dad are one in a million really.  He didn’t have to take me on and be a father figure when he married my mother, but he saw a kid with no male role model and stepped up to the plate like a real man.

So spare a thought this Father’s Day for the men who take up the mantle of being dad to someone else’s kids when the biological parent has abandoned them.  They often work – nay, battle – twice as hard to help mould the next generation of mothers and fathers.

To my dad – thank you for everything and I love you loads.

Stay Safe X

Greetings to the big old interwebz from little old me.

Where do I start I’m a Father, Husband, Dyslexic, poet, Archer & Coffee lover oh yes I’m also on the ASD (Autism Spectrum Disorder) with a DX of Aspergers. This blog is just me going on about random stuff that happens in an around my life.

I though whilst putting my poetry book back together that I should have a space to just say random things. I use poetry to express those pesky thing that you NT’s (Neurologically Typical) find so easy, yes emotions.

Well if you wanted to describe me I guess I’m a cross between Sheldon Cooper from The Big Bang theory and maybe Homer Simpson so here goes nothing…….

P.S This Blog unlike my published works is totally unchecked and is me warts (spelling and grammatical errors) and all. I shall be setting up a social media presence at some point soon.