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 💋

It’s July

Hey folks,

It’s been an interesting week. The week started pretty productively,

Gym✔️ Hand Therapy✔️ Blog back up and running✔️ Blogs Instagram Acc✔️

Then it all came to a abrupt stop on Weds when I had my CBT phone appointment. I had ask the have someone who had knowledge of brain injury. In our first couple of appointments she seemed as if she did but……….clearly it was false sense of security I was being lured into. We were talking about following the plan not the mood to make sure I get things done. Ok I can do that. So we are planning activities for the week. For this the Therapist will be T (saves typing 🙂) So the conversation goes like this………

T: so what the first tasks you are going do this week and on what day?

Me: hand therapy everyday

T: ok. Everyday though really? What time of day?

Me: yes everyday I need do do 400 reps everyday. It has to be in the morning as it’s when I function best.

T: ok. What are we going to add next?

Me: the gym.

T: ok when are you going to do that?

Me: again in the morning.

T: ok so what about in the afternoon?

Me: a nap.

T: ok is that a good idea? Is there anything else you could be doing? Remembering to follow the plan not the mood.

Me: yes I’ll need to have some rest as the concentration it takes tires my brain.

T: remember we are following the plan not the mood. It’s easy to give in to our brain not wanting to do something.

(Thinking in my head………Do you think I don’t know this! I’m a ***ing expert in it! For the last 3years have had constant arguments with my brain over doing tasks using my right hand instead my left. With my brain being like……..”this is too hard, why are we doing this? Just do it with your left it will be easier and quicker! I’m bored! I’m not playing!)

Me: yes I know but since my brain injury I get tired very easily especially when doing the hand therapy. (staring to get upset) It’s takes a lot of concentration as I’m trying to get my brain and my hand to communicate again.

T: I understand

Me: no! I don’t think you do! I don’t think you understand the battle………Ive got to go. I’m hanging up now

Click! End of conversation.

That killed my mood for the rest of the week really if I’m honest. I’m now trying to get back in touch with my neuropsychologist at Danesbury and also other privately. I’m going to be more through in my search. There are changes in my brain again and I need help understanding them.

Like every human out there my brain is constantly changing, adapting, fixing, growing and deleting (although it does this a lot as the keys to the short term memory department keep getting lost. Or the staff are sleeping on the job)

There is no definite answer to what you can achieve after brain injury. The only definite thing is how far you want to push yourself. In my opinion yes the experts can say this will/won’t/could/should happen but no one in the world knows what your brain can do……………even you.

For me I need the neuropsychologist to help me guide my body and my brain down the same path. Yeah there are going to be times that they don’t want to but instead of getting frustrated and angry I need help in managing it all and recognising triggers.

Well time to sleep. A new month of challenges and results and targets.

Laters💋

TalarMade FS3000 & Me

Hey folks I’ve been having a few tech issues and on an old phone so no photos I’m afraid just words.
​So as you can see with the heading I have an orthotic from TalarMade. By keeping my side of the bargain and my review of the FS3000 after the NeuroExpo the CEO Simon Dickinson kept his side side of the bargain and sent me a FS3000 for my own personal use. 

I received the FS3000 in July and since then I’ve been wearing it everyday. 

I’ll be honest I didn’t think it was doing much until I went out one night without it. I was only popping round to a friends so I was feeling lazy and couldn’t be bothered to put the orthotic on. Well as I started walking down the road I realised the difference it was making. As I walked down the road without it on my foot was dragging through, my toes were scuffing the ground. The hitch in my hip had reduced by half. I was struggling to walk and not fall over. This orthotic had changed so much in such a small amount of time. The speed that I walk at now has improved too. As the FS3000 makes my heal land first and then my toes. 

But the best example of how the FS3000 has helped was this weekend just gone. I was at a festival and I had my orthotic on and was using my mobility scooter. On the Sat the scooter started tripping out so we left it on the viewing platform and I used my feet. WOW!! All day I walked. I wasn’t having to worry about the bumpy uneven ground beneath my feet. I was able to pay more attention to the ****ing idiots who wouldn’t move or just start walking towards me and think that I was going to move. I lost count of how many people I tripped up as I used my walking stick at an angle to give me some space. 

The level of independence is have now has just gone up a level again. 

The FS3000 has changed my quality of life. I’m so thankful for that opportunity to go to the NeuroExpo and meet Simon and the team at TalarMade. Thanks guys. Below is a link to the FS3000.

https://www.turbomed.co.uk
Don’t get me wrong I still have issues with my foot turning in but not half as bad as it was.

If any company out there thinks that they can improve my walk still then please get in contact with me and I’ll happily give your orthotic/brace a go. 

Laters x

NeuroExpo The World of Saebo 

Another company that I am a big fan of is Saebo. Glyn and the team are great.

I first started using Saebo products while in rehab. The first product I used was the SaeboReach.

This glove was used as my hand was in a clenched fist and this helped straighten out my fingers. If you look back at Danesbury weeks 3 & 4 there’s a picture of me in the flex (I can’t get the photo to copy on to this post). It was great. At the time I thought my hand was always going to be a clenched fist until this product. You can find more info here https://www.saebo.com/saeboflex/

The other product I’ve used is the SaeboGlove.

I had a 2week trial of this and this. Similar to the Flex but you have the ability to use finer movements. It’s lighter that the Flex (obviously) and instead of the springs and metal mounts you have rubber tensioners instead. It’s a very comfortable glove to wear. You can find more info here https://www.saebo.com/saeboglove/
Another product that I only started using today is the SaeboMas.

I think this is incredible and that’s from one use. I don’t have great strength in my shoulder and as a result when I try to pick up bricks to build a tower after the first couple I loose any grip I have and struggle to reach and place the brick. What the Mas does is take the weight of you are allowing you to focus on the action of reaching up higher and keeping your grip. There is also a Mas Mini that can be used at home. You can find more info here https://www.saebo.com/saebomas/

Also while I was at the NeuroExpo I got to see the SaeboVR in action.

It helps people with physical and cognitive challenges involving daily tasks. It’s amazing to think how far things have come in just the 2years since I had my brain fart. I would have loved to have been able to use that while I was in rehab. Again more info here https://www.saebo.com/saebovr/

SaeboStep (for foot drop)

I got to look at this in greater detail too. Again discreet and simple. This is to help pick your foot up as you walk so that you have a better stride. It’s completely customised to you foot and the angle needed for ground clearance. Brilliant. Perhaps I should try this. More info here https://www.saebo.com/saebostep/

There are more products at Saebo. These are just the ones that I’ve used. They also do:

SaeboStretch, StimMicro, MyoTrac & ReJoyce.

Again all of these products can be found here https://www.saebo.com/

Aslo you can find them on Facebook saebouk, Twitter @SaeboUK, and Glyn @saeboukglyn.

If any of the products interest you of you would like more information. Perhaps it might benefit a family member or perhaps your a physio whose patients could benefit then get in contact with them. Like I said before they are very friendly and will answer all of your queries.

Laters 💋