I’m gonna fly someday

Hey folks,

The title is what I’ve been saying since my brain aneurysm in 2015. As I’m sure many of you out there has been too since your brain injuries.

For some of us it might be that it isn’t a case of someday it is a case of I’m gonna do it now. Boom I’m going to do it. I’m gonna fly.

For others it might be it is a case of the consultation saying I wouldn’t advise it. Unfortunately you will be unable to fly.

Others it might be the fear, anxiety, worry, stress of, planning a trip, getting on the plan and being in that confined space…….what if something goes wrong. Is just too much. I can’t.

Or maybe the I’m gonna fly again one day. I am. Just not just yet. I am going to. I will.

I was, I say was, I still am a combination of the last two. I had always wanted to fly since since my aneurysm. But team ASF (anxiety, stress & fear) have been a very strong at holding me back.

But that all changed on 20/09/18. When I got my arse on the plan and went the to Highlands of bonnie Scotland. With my aunt.

The week or so leading up to it was hard work.

I wasn’t sleeping very well. Or much in fact. I’d wake up in the morning covered in sweat. Have nightmares. Wake up suddenly. I mean wide awake. My brain wasn’t going to let me rest. Or it I’d be struggling to keep my eyes open and get to bed and couldn’t get comfortable. Which is a real issue when one side of your body doesn’t function as well as it should.

Even with planning to go to techno gig that my friends Chris, Matt & Paul run called Sonance, taking my mum to the Royal Albert Hall to see the Motown legend that is Dionne Warwick and spending the afternoon with my ex Jo having a good laugh & a few drinks my body wouldn’t rest.

Now I had all these things planned for the days leading up to the flight as I know that going to music events is quickest way to exhaust me. Mentally and physically. Due to having to get to said event, catching up with people, unfamiliar venues so I have to be more aware of what is around me, the ground underfoot, any steps, where the toilets are, loud music and flashing lights.

But no team ASF we’re working overtime in keeping my from rest and sleep. That then just adds more emotions into the mix. Grumpy, anger, tiredness, snappy, dysphasia, my stutter, frustration, crying and rudeness. (I’m sure that most of my friends and family would say that’s nothing new🤪)

But regardless off all that I faced my fear and done it I got on that plane and flew. I done it! I faced team ASF head on and done it!

Now if you are reading this and thinking I never could then never say never. You might not be able to now but every step towards achieving that, no matter how small, no matter how many is still a step and you will get there.

Remember you are stronger than you think.

Laters 💋

Recovery from Maxed out on Music

I’m still recovering!! Still!! 5 weeks since it all began with elrow and 2 weeks since it finished at Classic Ibiza!!

It’s a slow slow road. I can’t just have a couple of early night then be ready to go again. See there is 2 issues with being so busy…..

Brain & physical fatigue

I tried to explain brain fatigue and I really struggle to. So here goes……..

Imagine your head as a roundabout. There are 6 exits leading to sleep, anger, happiness, problem solving, hunger & relationships. Now all the drivers know exactly where they are heading, all use their indicators, the traffic lights all work and the traffic flows smoothly (no brain injury).

Now now think of the holidays when all the tourists are in you town, city village and they where they are going, they travel slow, take wrong turns, indicating one way going another, to top it off there has been a massive electrical short and the traffic lights don’t work (brain injury). Eventually everything is going to come to a standstill.

I’ve got holidaymakers on my roundabout, the locals, every road on & off the roundabout is down to one lane due to roadworks and to top it off the traffic lights are intermittent, sometimes not working at all. Like the past couple of weeks.

Which then has the knock on effect to my physical abilities and rehab.

Because of all the new sites, destinations, environments, crowded areas, the fields I’ve walked on my, my brain is working overtime. I’m constantly assessing the ground I’m walking on, so I keep my balance & don’t fall over. Making sure that people give me room to move or just see my walking stick so I don’t trip them up or worse they knock my stick away and I fall over. Where there is where I can sit down. Where the disabled toilets are. I could go on but my mind is blank. As I tire then my speech gets affected. I start to stutter and loose whole words and sentences. Then I get angry and upset with myself and cry lots.

Then the the is the physical, my energy, my strength,my posture. The extra strain that is put on my hips, my left shoulder (which I’m still receiving physio for) and arm, my left knee, my feet and my back. Why all this…..ok. My left hip, knee, foot because most my body weight goes through that side. I start the day walking as correctly as I can but as I get tired my posture changes dramatically. I start hitching my right leg to walk. So I start leaning more to the left to compensate and “swing” my leg through. Then I’m then leaning on the walking stick more, gripping it tightly, pushing pressure up through my shoulder. I do everything with my left arm. From putting underwear on to pulling myself up off the floor. When you haven’t got the energy it makes tings bloody hard.

That then plays with my emotions. I “hulk out” as Deb calls it. I get angry because I can’t do things. I can’t sleep even though I’m tired. I start crying because I should be doing things and I can’t. I should be better than this and I’m not. I then get frustrated that I have to accept help or just sit there doing nothing and leaving everything to Deb.

And round and round we go. Then just for shits and giggles we will add in that my rehab is suffering because I went and had some fun. Then Mr & Mrs Physio (Helen &James) are going to be disappointed in me for not doing more and feel like I’m wasting their time.

So some out there might be thinking……..if you have to battle with all the that then don’t do it.

I say to them for me right now this is my full time job. And like the employed out there I need a break, a change of scene. Just like you take holiday from your job. I took holiday from rehab. Don’t get me wrong I’m paying for it. Maybe even put myself back a bit. That sucks big time, but the enjoyment I had out weighs it. Even if I have struggled with sleep, emotions, function and can’t get my brain and my right hand to connect much at the moment. Everyday for me is rehab in one way or another.

I can’t stop doing things because of the challenges I have. Next time they won’t be in succession like that. I’ll spread them out better. I’ve learnt a lot about myself over these few weeks and recognise when I need to slow it down more.

I don’t if this will make sense but I’ve published it now……………..oh well.

Laters 💋

Maxed out on music 🎧

Wow! Wow! Wow!

I’ve had a few busy weekends and music festivals! 3 in a row the be exact.

19th Aug ELROW TOWN @The Olympic Park.

This was an amazing day. I made sure that I had my silicone foot on today as I was going to be walking lots & hopefully dancing too. I was meeting my friend Yvette at the station the other end, so I had to made my own way there. No Debbie for backup or to lead the way. Train was easy though was straight through.

Met up with Yvette at the other end and it was time to party.

The only issue was walking stick and can of cider require the same hand, can’t be spilling it now! Yvette bless her helped so there was no cider casualties. PHEW!!

We had a good old dance. Well I kind of two step shuffled, but styled it out with the walking stick.

I hadn’t dance so much in such a long time. It was also nice to catch up with Yvette too and have a good old chin wag when it was cider time. It was a great day. Great dancing. I found my love for tech, house, tech house all over again.

24th-26th Maui Waui back in Suffolk.

Friends of ours (Verity & Molly) had been telling us for a couple of years that we should go with them to Maui Waui. We were always at another festival so couldn’t. This year we went! Wow! It was out there.

There was myself, Debbie, Verity, Molly, Gemma, Tori, Sadie & 3 others but I can’t remember their names (sorry). Our set up was great, our trailer tent, Gemma & Tori in an teepee, Verity & Molly in a caravan & Sadie and friends in a motorhome. Sweet!! These lot are bloody nuts. Love them all dearly. It was a very chaotic, fun weekend.

Tori the master chef, Verity the Desperados pusher, Debbie the Pee queen, Gemma the face painter, Captain Molly Spiced Gold, Sadie the Vapemaster and me Hop-along.

Debbie really relaxed over this weekend. It might of been the alcohol but also the fact the everyone looked after everyone. So she didn’t have to worry about me constantly. It was just brilliant. Again armed with my silicone boot it was time to party.

It’s not your average festival with headline acts and known artists. Well it is if you are familiar with the music. This is what is written on the website

What is Maui Maui?

Maui Waui is a 3 day international festival of music, performance and arts. Now in it 6th year it is fast becoming one of the area most exciting festivals, pulling in accomplished and undiscovered bands and performers from all around the globe. Maui Waui focuses on an all welcoming family feel with loads to do for Kids and Adults, from watching world class bands, full circus shows in a dedicated circus tent, big bass dance tents, small upbeat bands and acoustic acts, cabaret and comedy. Maui Waui invites you into their world – you will not be disappointed.

And we weren’t. It was fabulous. We enjoyed it so much we will be back next year. Such a wide variety of bands, dj’s, performers, duo’s, soloists and acts. Something for everyone. Loved every minute of it.

Classic Ibiza @Hatfield House.

Well this was the icing on the cake. It was just myself & Debbie.

So we our old lady shopping bag and filled with food, drinks, blanket & jumpers, plus chairs and table and we were all set up.

The Urban Soul Orchestra take some classic Ibiza dance, house, tech & trance tracks and play them with an orchestra. We had underworld born slippy, moby why does my heart, massive attack unfinished symphony, robert miles children, to name a few.

Again armed with my silicone boot it was time to dance.

Absolutely bloody amazing!! Brilliant music and an amazing light show to go with it. Took a video of ever track they played. It was brilliant.

Had a great night and again met some fantastic people. Watching Debbie let loose and bust some moves was just brilliant to see. Letting her hair down again, two weekend in a row. Fantastic. I can’t remember the last time she was so relaxed.

At the end of the night one woman walked up to me and said “can I just say you have the most amazing smile. I’ve looked over several times I just wanted you to know”. 😊

That was so lovely to hear. Especially when I don’t think I do after everything that has happened. 😊

A brilliant, busy, fun few weekends but I really suffered with tiredness. Will all be explained in my next blog.

Laters 💋

Friendships

Hey folks,

For me when the weather is shit outside like it is today. I feel trapped. It’s pissing it down (it’s raining), so unless I have somewhere I have to be, I’ll be staying at home. When you can’t really walk fast and it’s raining lots it’s only mean one thing………you’re going to get very wet!

So I stay home which then means I stat over thinking and worrying about situations that haven’t happened yet. Or in fact aren’t ever going to happen, but my brain says the old faithful questions……….”what if…….”, “why………”….”what did you say…….”. It’s a vicious circle and when your short term memory isn’t ever working 100% then you really start eating yourself up. “I must’ve said something……”, “are they ignoring me……”, “why don’t they like me anymore……..”, “I don’t fit in……….”, “they don’t want to be my friend anymore…….” I could go on for ages with.

It’s true friendships do change when something like this happens, but it probably isn’t 100% your fault. In fact it might not be anyone’s fault. Everyone’s life changes. It just might be that………

  • You never were as close as you thought you were. The seriousness of the situation confirmed that.
  • They don’t know how to act around you.
  • You’re trying to still be pre brain injury you and it takes you a while the realise you’ve changed.
  • You can’t handle what’s happened.
  • They can’t handle what’s happened.
  • You don’t fit their lifestyle anymore.
  • They don’t fit yours.
  • The friendship has run its course.

And many, many other reasons.

The other side of that is that other friends who you weren’t as close to step up and give you the support you need. You also make new friends through support groups, charities & even social media of people who have been through a similar experience to you. I say similar as no two brain injuries are the same.

But I think the biggest thing is to be your own friend. If you don’t manage all of your tasks/challenges/rehab for that day, your very tired, your brain is fatigued. Don’t beat yourself up, or think you have failed because you haven’t. Love and appreciate this new you. This might not be how you are forever, our bodies change and adapt everyday. But if this is how your body will be then love it nonetheless.

You are amazing and you’ve already shown that by surviving. Remember you are a SURVIVOR!!

Laters 💋

It’s been busy

Hey folks

Apologies that I haven’t got up to date sooner but it’s been a bit of a tough couple of weeks.

So let’s pick up where we left off last time…………so James had put me through my paces in physio on the Friday.

Right on the sat I was in the gym when my mum called to say that my grandad was in hospital very sick and that they think that it was going to be it this time that he wouldn’t be coming home again. So mum came to mine and Diane was flying back from Scotland and meeting mum at the hospital. I went with mum to keep her company and be her sat nav. We were only 10mins from the hospital and someone sped through some lights and went into the back of mums car!

Grandad was sick. The worst part of it all was that his brain was still 100% working it was just his body was giving up. He sadly passed away on 24th July at 2:15am. He had got to say goodbye to nearly everyone so I was finally at rest.

After the accident on the sat I went to pop down the shops on the Sunday and as I was driving I was getting pain in my shoulder and down my arm. When home I was moving my arm around and couldn’t move it past 90 degrees. So off to the docs I go and you guessed it I’ve got whiplash in my left shoulder. Great! The pain killers the doc gave me to take I can’t as they interfere with my happy pills and so I could be off the planet. So once I’ve spoken to the insurance company I get hold of James for physio.

I went back to Suffolk for a week to give Debbie a break. Her job is stressful and now that I’m a bit buggered in both arms I can’t do as much around the house. I’m getting grumpy and snappy as it hurts then she is getting grumpy and snappy as her days never stop. We end up arguing and that’s not good.

Had l lovely week away a good time to reflect and put things in perspective. Spending valuable time with my niece Maddie age 9 and nephew Nathan age 17. I caught up with one friend while right at the end of the week I was back but no one else. The reason I went back was to figure things out in my life and I know if I’d have caught up with more friends I would’ve avoided it. Apologies people I love you all.

So last week. Back here I started physio for the whiplash on the tues with Helen. Helen is the wife of my Neurophysio James. Helen is lovely and put me at ease straight away. I’m so lucky that I have James & Helen dealing with me as no notes can get lost, they have my full history and they are such lovely lovely human beings who are bloody brilliant at their job. Don’t get me wrong my arm was aching after the session but in a your gonna get fixed kinda way. I can’t leave you to fix in your own time as I need you to function. The only down side is that I’m not allowed to do any upper body work in the gym until Helen tells me I can.

We said our final goodbyes to grandad on weds. A beautiful service and getting to meet family for the first time. It was a very hard day seeing my mum and Diane so upset. It was a time for reflection too. He was such an amazing, kind, strong and gentle man I just wish I’d spent more time with him.

Thursday was therapy day. Again with everything that had happened over the last couple of weeks that was a mentally hard session. It was hard for me to get to sleep Thursday night. Friday again I was physically and mentally drains from the past few days so I wasn’t very functional. Again I struggled to sleep Friday night. That’s one of the issues with brain injury it’s harder to process what has been happening and so the brain will decide to process,dissect and understand what been happening when it want to not when you want it to.

Helen told me to rest my arm and I didn’t think that hanging out some washing and carrying some laundry in a basket would be and issue…………how wrong was I!! I struggled to sleep Saturday night. I couldn’t lie on my left or my right. Needless to say trying to get up on Sunday was a bit of an issue and Debbie had to help me. So Sunday was a major rest day for me. Helen’s going to kick my arse on Tuesday when I go back for more physio.

And so here we are back up to date. Now I’ve got up to date I’m now going to have so breakfast and coffee before heading over to Hertford for the Headway coffee morning.

Laters 💋

It’s been a while

Hello folks,

First of all big apologies. I just looked back at my last post and its been a couple of weeks………my bad!

I just looked again for reminders of what I’ve been up to and it’s 3 weeks!! Shit!!

Well I 9th-15th I managed to go to the gym 3 times. I was feeling really motivated and I was in control of my energy levels. Which will probably seem strange to some of you reading this but sometimes the fatigue draws me into a false sense of energy. Like I’ve said before it’s so difficult to explain if you haven’t experienced it. Below is Headway’s analogy:-

Fatigue is experienced by everyone at some point after a period of physical or mental activity and is a signal telling us to take a break. ‘Normal’ fatigue is time-limited and alleviated by rest, whereas ‘pathological’ fatigue, such as that experienced following brain injury, may be present most of the time. It may not improve with rest and is likely to significantly impact on people being able to do the activities they want to do.

If you would like to read more here is the link https://www.headway.org.uk/media/3995/managing-fatigue-e-booklet.pdf

I also stuck post it notes all over the cupboard doors and light switches saying Right hand only. To remind myself obviously that and cupboard that was opened or any light switch had to be operated with my right hand. This is because my brain wants to automatically use my left coz it’s quicker, takes less time, concentration & effort. That is a battle I constantly have. The funniest thing about sticking up the post it notes was literally 5 mins later I was making a cup of tea and opened the fridge door with my left. Even though there is a post it not right above the handle!!

Putting post it notes up has made me a lot more aware of my right hand. In the shower now I try to was as much of my body as I can with my right hand now. When reading I try to turn pages using my right hand. That is a lot harder as I end up getting several pages at a time………I suppose it’s a quicker way to read a book?

16th-22nd this was another busy week. Not really dissimilar to the previous week really. Going to the gym and hand therapy getting my hand more involved in day to day things as much as possible.

I had my first counselling session with my new therapist who Headway Herts got me in contact with. Chris is fantastic. She comes to my flat. She has worked with many people with brain injuries so she has a good understanding unlike that wellbeing woman. The session was a highly emotional rollercoaster for me. Plenty of tears. I was exhausted after she left. Fatigue was at an all time high, I just laid on the sofa after she left. In fact I was in bed early that night. I couldn’t string sentences together and couldn’t find words I wanted so I took myself to bed to rest.

The Friday I had Physio with James. It was has work……….in fact a classed it as one of my gym sessions for the week. James had me standing in front of a wall with a small crate with foam balls in. To start he told me to reach down pick up one of the balls in my right hand then reach up and touch the ball on the wall as high as I could. Once I had he made a paper target that he stuck the wall and every ball I picked up had to hit that target before putting in the other basket. 10 balls each time with a minute break in between. Soooooo I got to the end in round 2 and this time instead of a 1 minute break I had to go straight over to bench and pick up marbles with my finger and thumb the finger tips. There were 9 marbles that I had to get from one side of the board to the other. 1st attempt took ages……..I’d say 3+ minutes. As soon as I had finished it was straight back to the balls. Then back to the marbles which I was getting quicker at. Again back to the balls. This was becoming more difficult as my arm was tiring and I was struggling to get the ball to the target. Again back to the marbles and this time it was even quicker and my grip of the marbles was really good. The session finished with one more round with the foam balls. By this point it was very difficult. My arm was knackered. So now that is the way we are working. Because the flexors (I think I’ve got this the right way round) in my forearm are tight it makes it harder for me to to finer movements with my hands, but…………by tiring my arm and the flexors there is less resistance so the finer movements are easier to do. So that’s the route we are taking now.

Right this is quite a big post so I’ll leave it there for today and I’ll finish it and get up to date tomorrow.

Laters people 💋

Feeling Hot! Hot! Hot!

Wow!! It’s been one hell of a hot week!!

I love to weather……………..but my head doesn’t.

After my aneurysm I struggle in hot weather. I become dehydrated quicker. Which is when the headaches start and my patience…………..well it ****s off!! But on the up side it’s also a good fluid indication for me. I think I’m drinking enough water through the day. A headache starts……..you know that little twinge you get, like as your hangover starts to rear it’s ugly head. So I know I clearly haven’t drank enough fluids so I best get some. I’ve had days where I’ve had 5ltrs of water………crazy.

Tuesday was an interesting day for me………..my memory had decided to have a day off that day……..well let’s just say it didn’t get up with me. There were some spuds in a saucepan on the cooker that I need to boil for Luna’s dinner later. So in my had I was like “right I’ll do them in a min then they will be done before I go to the gym.

Fast forward to me at the gym. I’ve only been the 20mins at the most. Sitting on the recumbent bike about 8mins in and then horror hits my face! Did I turn the spuds off? Do I even boil them? No I didn’t……….did I? Oh no Luna what if I haven’t? Luna could get hurt! No no no I didn’t cook them. Or did I? I’ve got to get home and fast. Now getting home fast is a slight issue when you don’t have the car, haven’t brought any money with you and have to wait for a train…………d’oh!

Needless to say once I got home I hadn’t even attempted to cook the spuds and Luna was sprawled out on the bed trying to keep cool.

The spud saga doesn’t end there no no no………….I was in my fitness class in the afternoon and again…….30mins in……….the spud dilemma starts again……..did I, didn’t I blah blah blah. If I hadn’t have managed to dig into my memory and figure remember that all I done was put the water in the pan I would’ve been on another race home. Which this time would’ve been worse as I would’ve been waiting for the bus!

So with all that happening and then the England match plus a couple of shandies. Needless to say I was shattered Wednesday.

Thursday was a gym day………a very good gym day actually. Well impressed with myself. Also things were starting to stick in my hand therapy. That has been hard this week. I haven’t challenged myself hard enough I know. I need to get tougher on myself and not loose my cool and get so frustrated when it doesn’t click. I also stuck little post it notes on every light switch, plug socket and door to remind me that I was to use my right hand to use any of them. Proper fail! No sooner had I stuck them up that I was making myself a coffee and went to the fridge and opened the door with my left hand! This is going to take a while to retrain. I spent a few mins that night fighting with light switches. By the time I got into bed my right arm was aching from trying to turn off the lights. I achieved it and was well chuffed but again I’ve got to retrain that impatient part of my brain that wants to do it all with my left.

Friday I went to a new class at Shawe Physio here in Hoddesdon. One of the men Mark, that goes to a Headway Herts group that I volunteer at as been saying for ages about a balance and mobility group he goes to. Mark keeps asking me to go and so I went this Friday. I have to say it was a good class, with balance tasks, stretches, games . I really enjoyed it. I definitely be going again. Plus I get to catch up with Mark. He is such a card.

Saturday we went to a festival called Back of Beyond. That was amazing. 7 stages, of house, soulful house, classic house, tech, rave and jungle. A great set up and it wasn’t that big only 2500 tickets. I loved it. We both loved it and will definitely be going next year. Hopefully there will be a group of us. They were showing the match too but the tent for that wasn’t very big and it was rammed. So we headed back to the pub. That was crazy. A great day had.

So we get to Today Sunday. A day of rest for me. A busy week has been and another busy week ahead.

Happy Sunday folks. Catch you next week.

Laters 💋