My new brain

That was close!!!

Hi Folks,

There was me in my last blog saying that I was going to make a conscious effort to do my blog each month and i nearly missed Feb. Shocking behaviour!!

So how are things this month compared to last…………….. not much different really. Motivation is still not very high. Still haven’t picked up my level 3 course. Brain power just isn’t there for it. We have got the garage set up as a gym now though. So there is all the gear and no idea but have been more active in the last week and managed some form of a workout on at least 4 days.

An amazing bit of news though.  My local physiotherapists Carter & George based in Hoddesdon (www.carterandgeorge.co.uk, Instagram @carterandgeorge, Facebook The Carter & George Practice)  There have an AlterG Treadmill.  This is an anti gravity treadmill. They were advitising an introductory offer of a 30min session for £15. I couldn’t pass that up I had to have a go! My neurophysio had been telling me i should have a go in one as he believed it would help with my walking. The only thing was that was in Stevenage. Which is a long way to go for a short amonut of time. So when this came up and its only down the road i couldn’t say no.

It was an amazing experience.  It was really weird to start with, you have to get into these shorts that are made out of the same material as a wet suit. The also have to be as snug as a wet suit otherwise the air will escape and there  would be anti nothing going on. Bless the poor girl Charlotte who had to help me them. It was comical as I’m saying to “her don’t worry just give a wedgy and pull them up”. So there you are in the snug shorts with a big rubber lip to them with half a zip. You then step onto the treadmill and step through an area with the other part of the zip on. They then lift the plastic bag (only way I can think to describe it). Once its at the right height for you they then zip you in. Once in they push a button and it starts filling with air. Stangest feeling and then as it calibrates you have to push your heels into the treadmill otherwise you will float. You can work the machine taking up to 80% of your bodyweight. Unbelievable! It was amazing the machine was taking between 40-50% of my bodyweight and keeping me balanced, I just concentrated on my walking. The strangest part was I spent the most time fighting with my hip as it wanted to hitch instead in a normal stride. It was an amazing feeling for the first time in 6years to see my reflection in the mirror and see my head and shoulders staying level. I was buzzing by the time my session was over. When the seddion was over Charlotte did ward me that my legs would feel like lead weights and that is very true.

Once I have the money I will definatly be going for more sessions as I totally believe that this will really aid my recovery 100%.

That’s it for this month unless you are looking for a car………as I’m selling mine https://www.ebay.co.uk/itm/Ford-focus-titanium-automatic/164712531135?hash=item2659a1c4bf:g:lfQAAOSwLGpgL9Mi&redirect=mobile

Time for some humour……….

What do you call someone who can’t stick with a diet?    

A desserter.  

Laters 💋

Hey,

As it is World Mental Health day I thought I would share my mental health difficulties with you all.

I suffer with depression, anxiety, lack of short term memory, disphasia, aphasia, low self esteem and feel like a burden 75% of each day.

I have suffered with depression in waves for most of my adult life. Now since my aneurysm rupture it is attached to me constantly and now has introduced its friends anxiety and low self esteem to join the party.

People tell you that you are an inspiration. That you have come so far., but……..

• When your life changes over night and you had no control of it, no warning signs and you suddenly need help to do everything.
• When your independence is a lot harder.
• When you have to take so many photos of places you go, things you do because you have no short term memory.
• When your talking to people and you can’t remember what you were going to/have said.
• When you can’t think of words, or take longer to process information due to aphasia and disphasia.
• When you upset people and can’t remember what you said /did/happened.
• When somewhere new and anxiety takes over, you sweat so much, start stammering (post brain injury), shake, struggle to speak/explain where you need to be.
• When you feel like people don’t want to do things with you because it takes extra due to walking issues.
• When your mentality has changed and you get really angry at the flick of a switch with no warning so as to remove yourself from the situation to calm down and scare loved ones.
• When people say they need a break and you don’t get to have a break.
• When you can’t sleep. No matter what you try.
• When every big headache you get you fear that’s its happening all over again.
• When an environment gets noisey, there are flashing lights, you can’t hear anything and you scared.
• When you feel like no one wants you to be there.

You don’t feel like an inspiration. You can’t see how far you have come.

You feel like a burden. No one around you signed up to this. Your partner and family didn’t sign up to this. It feels like groundhog day everyday.

Every day is a challenge. What is my day going to be like. Is my brain and body going to work as a team today. How much brain fatigue do you have today. Can you get through the day? Are even going to make it from the bedroom to the sofa?

Some days I don’t even want to have a shower/wash make any effort. What’s the point? Who cares?

Sometimes the glass is half full? Sometimes it’s empty. Sometimes it’s full but it doesn’t stay full all day. No matter now hard I try.

Laters 💋

Hello

Its been a long time since I last blogged anything.

It’s been a challenging year in more ways than one:-

• Fitness instructor course
• Therapy
• Anxiety attacks
• Panic attacks
• Weight gain
• Deep bouts of depression
• Anger/rage
• Wedding of the decade
• Camping
• Walking distance
• Pure acts of Stupidity
• Lone travel
• Loneliness
• Sporting events
• Music events

And there is still a couple of months left to see what else can be added.

I’m going to pick up on a few of these and talk about them more………soon.

Laters 💋

Hey there

So I went to these two conventions in Birmingham on 26th & 27th March.

I have gone the the Neuro every year for the past 3 years but the Naidex was new to me.

They were both amazing conventions. I would say the I preferred the Naidex to the Neuro purely for the fact that it seemed more client based than corporate based. The only downside was the fact that due to the amount of people in wheelchairs, motorised wheelchairs & scooters the walkways could’ve been wider as there were a fair few traffic jams going on.

I know these events are all about the selling but you can get put off from going pretty easily or get into debt. For example while in the Neuro Convention I was speaking a guy (I won’t name the company) about when I used the bit of equipment in my rehab and some the issues I had. We chatted for a bit then I left. Walking round again the next day saw him again and said hi. He then spoke to another colleague and explains what we were talking about the previous day. She then the explains the solution to the issue and I say thank and go to leave. She then informs me they can do me an offer of the equipment if I get it today. I ask how much it costs. She tells me £1000!!! I explain I don’t have that kind of money. Her response “it’s ok we do payment plans”. I say no thank you and leave.

Why do facilities or equipment that would help disabled people live a better life so ****ing expensive!! Because we are disabled you think it’s your right to rob us blind!! Do you think we have an endless supply of money. Most of us have to fight every couple of years or so to prove we are disabled and need our benefits. Greed pure greed! That doesn’t just apply to that certain company it applies to plenty.

Ok rant over now the good stuff.

The amount of businesses and charities at these events always amazes me. Especially this year like I said the Naidex felt more personal. Certainly some things had a more realistic price range.

Here are a few of companies I chatted with. There are 3 that I am going to focus on in other blogs.

Brickhouse Farm Cottages www.brickhousecottages.co.uk. These are based in Lancashire and are holiday cottages that are completely set up for disabled guests. They have track hoists, kitchen that rises and falls, profile beds, recreation area for children, dog friendly and the winning point for me they have a hydro pool.

Para Dance UK www.paradance.org.uk exactly as the name states. This is inclusive dance training for anyone who wishes to teach dance to disabled people. You might be the next John Travolta or Olivia Newton-John yet. Tell your group/charity.

AccessAble www.accessable.co.uk. This is brilliant. You can do this on line or even download the app. Basically you tell it what you are looking for, a pub, restaurant, hotel etc and where then it will give you a list of all places and you pick from a drop down menu your requirements and it will filter out the ones for you. Pure brilliance. I love it.

Church Farm Barns www.church-farm-barns.co.uk. Another holiday cottages place. This one is on the north Norfolk coast, near Hunstanton. I spoke to the daughter of the gentleman that own this. It us3d to be a farm then her mother got dementia and wasn’t very mobile so it couldn’t be a fam anymore. So they converted to holiday homes homes. All have wet rooms, level access throughout, again hoists, profile beds and family and pet friendly. Because the family have had personal experience with disability they have a greater understanding of needs.

Saebo UK https://uk.saebo.com Of course I went and said hi to the lovely Saebo team of Amy (@SaeboUk Twitter) & Glyn (@saeboukglyn Twitter) Their rehab equipment is a reasonable price for the average joe rehab patient. In fact I am now the proud owner of a Saebo Glove. Post to follow. The variety of rehab equipment they have offer is amazing (I wrote a post called NeuroExpo The World of Saebo in June 2017) go back and have a read I’m not typing it all again or just click the link and go to their website.

I could spend all day talking about all the different businesses and charities that were there but I’m not going to. Instead have a look for yourself on the events websites. www.naidex.co.uk & www.neuroconvention.com.

Laters 💋

Hello all

I know it has been ages since my last blog and over the next week I’ll be playing catch up.

The reason I’m so far behind is because unfortunately one side effect of new me is that I can not multi tasks anymore. So if the is an important or major event going on then it takes up all mental and physical energy. I also hate typing as again it takes up lots of energy remembering how to spell and to make a sentence readable.

That important event was my InstructAbility level 2 gym instructor qualification with YMCAfit. I’ll be talking all about that in another post.

So the blog posts to come are:-

Naidex 45 & Neuro Convention 2019

Posts on 3 focus businesses

Getting my Saebo Glove

InstructAbility

Doctors/Stroke Clinic

Week Alone

So happy reading.

Laters 💋

Hi folks,

My sleep is getting shocking. Sat night into Sunday I got 4hrs sleep and then was wide awake at 3:30am with ringing in my ears. You know what it’s like at that time of the morning, the flat is deadly quiet so the ringing in my ears was in surround sound! I’m averaging 4-5hrs a night! So my brain isn’t getting the rest it needs. I think I’m going mad………………..or I will end up going mad, be put in a round cell and told to sit in the corner!!

I’m driving my partner nuts with worries everyday. My anxiety and fear are at an all time high. So now I’m trying my hardest to deal with it better by myself and take the pressure away from her (I’m sure there are carers out there there understand that part) as I sound like a broken record, and I don’t want make her snap.

She has enough on her plate at the moment with some sad new of a family member, a work colleague and an old school friend, so I’m trying to be stronger and supportive of her but I don’t think I’m doing very well.

When I’m in this place in my head/body I feel very isolated. I feel like I’m not worth being around as I’m just full of fears, worry and have nothing to positive to say, so I’m very quiet. I don’t feel like people want to be around me so I don’t make the effort to go out. Although my face is smiling inside I’m eating away at myself and crying. It’s so frustrating how mental health can trap you. How it can restrict you and limit you. Make you feel alone. Make you feel like you’re not worth anyone’s time. How although on the outside the shell in the same, on the inside it’s all trying to keep together with the help of glue, sellotape and stickyback plastic like a Blue Peter “here’s one I made earlier ” project.

I’m sure a lot of people out there can relate to what I have written. Especially people that have been through a traumatic experience. When your own mortality is highlighted (Not the best description but I can’t think how else to explain it)

Just remember this…………..YOU ARE NOT WEAK FOR SAYING THAT YOU ARE STRUGGLING AND NEED SUPPORT AND HELP.

We are all beautiful in our own special way! Imaging how boring life would be if we were all the same 😳

Have a beautiful day ❤️

Laters ❤️

Hi folks,

Apologies for no blog lately but it’s been a difficult time.

So I survived my 1st month placement at the gym. The staff there who I’ve met are great.

I’m now a month into my gym instructor course. Which again the staff are brilliant, the other students are a good laugh. So I’m enjoying it lots but…………

Since this all began back in Jan I’ve had some weird s*** go on.

Headaches…………over my left eye, behind my ear (either side), top of head, neck pain, higher blood pressure, breathing issues, pins and needles in hands or feet and few others that I’ll leave out. I’m not sleeping properly either. I go to bed then I’m wide awake and the fear eats at me. I literally sit in bed watching videos until I can’t keep my eyes open and fall asleep.

So needless to say my fear and anxiety are through the roof. I believe it a lot of the things mentioned above are due to my anxiety.

If we look at the bigger picture, I haven’t asked so much of my brain in nearly 4yrs.

My routine has all changed again. I think I’ve spoken about how my brain gets really disruptive and difficult when things change suddenly. One of many brain changes since my injury. To be fair I had forgotten about it as I’ve had the same routine for a long time. I didn’t gradually introduce small changes. In fact as I’d been doing pretty well I’d sort of dropped into a I’ve improved so much this new journey is going to be so easy.

So it’s had to from learning to walk again to marathon running and take in lots of information so quickly. Which I don’t think it’s happy about so as a payback this is happening. It’s like a game of poker, it’s saying “I see your career choice and information overload and I raise you fear, anxiety, headaches, high blood pressure and anything else I can think of”!!

I’ve got an appointment this Friday to talk to the doc about all this. So hopefully the will get sorted.

Don’t get me wrong I am finding it hard enough. I’m on the course on the Tuesday I sleep literally all of Wednesday, back at the course on the Thursday sleep most of Friday and the weekend. The following week is all study, study, study. The practical side of the course I’m not too bad at but all the written side and remembering names, layers and functions of bones, muscles I’m struggling with. It’s not sinking in.

I haven’t been doing much rehab in fact nothing really, any personal training session with Lee or a class with Fiona since this all started I’m just so tired. I miss it terribly but with the struggle I’m already having with my brain I need as much rest as I can get while doing the course.

I’m am constantly learning with my brain injury. The goal posts never stay in the same place. Nearly 4yrs in and I still never know how my brain is going to react or how tired things make me. It amazes and puzzles me so much everyday.

Right time to attempt some studying.

Laters 💋

Hey everyone

Firstly a massive thank you to everyone who has kindly donated to my go fund me page. Thank you so much.

I’ve taken the bold move of deciding to create a go fund me page to raise money for further rehabilitation.

This decision has taken me a long time as I feel embarrassed for asking friends, family and complete strangers for money to help me. I’ve always been the kind person that stands on their own two feet and figures out how to pay for things. I can’t do that anymore and rehabilitation costs aren’t cheap.

I want to be able to give myself the best chance of recovery to the fullest. I don’t want to be looking back in years to come and wondering if if I’d of tried this treatment with my leg be working better or if I tried this treatment would I have more use of my arm.

The biggest hurdle of all of my recovery is cost. It costs a lot.

The bigger picture isn’t just me it’s for me to then be able to go on and help other people in my situation or a similar situation. So that they can have a more independent life and not feel like a burden on friends or family why I do sometimes. To be able to push themselves into gaining more movement in their arm, or their leg or Multiple limbs. Because no one knows what the human body can achieve or what recovery the brain can make.

If you can help at all I’d really appreciate it.

https://www.gofundme.com/neurophysio-costs&rcid=r01-154850909722-d32fc50fcc4d4beb&pc=ot_co_campmgmt_w

Laters 💋