Naidex 45 & Neuro Convention 2019

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 💋

Quick note

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 💋

My mental struggle at the moment

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 ❤️

My chaos

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 💋

Go Fund Me

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 💋

Gym Voluntary Placement

Hey folks

Shit got real this week.

I don’t know if you remember that I’m on the InstructAbility Gym Instructor course?Well I started my voluntary placement this week. The wheels are turning.

So I went over on Monday and met the Gym manager Chelsie for a little chat and have a look round. It’s quite an amazing gym. Plenty of equipment and very big. So got my uniform ready for starting my 1st shadowing shift on Wednesday.

Met some lovely F.I’s (Fitness Instructors) on the Weds & Fri called Guy, Lucy & Ronnie. Who chatted with me. Shadowed Ronnie giving a induction on the Weds & Lucy giving an induction on the Fri.

I thought that this wouldn’t be too difficult to do but I underestimated the brain power that I have used up and the stress and anxiety that I’ve put myself under.

I think part of that is because I have to create a new routine. Now there are more elements that have to be fitted in. Whereas before i had to fit gym, personal trainer, exercise class, dog walk, physio and rest into a day. Now I have to add 3 x 6hr shifts into this. At the moment as well they aren’t set in stone as to what I am doing which is very frustrating to say the least but hopefully that will all be sorted today/tomorrow.

It’s another learning curve with my thought process too. You see sometimes I see things as very black & white. “It should be done like this so why isn’t it”! Whereas life isn’t black & white. There are plenty of grey areas, and more people in the equation now. Not just myself, Debbie, PT Lee, Headway, and Physio James. My responsibility has changed. So that’s giving me plenty of headaches.

Hopefully things will settle and I’ll get routine.

Let’s see what this week brings………

Laters 💋

Muscle spasm & colds

Hey everyone,

Hope you are well.

So what have I been up to since my last post?

Well I got another bloody cold! 3rd one in 4 months. It seems this has been the lurgy household. After all this time I still can’t get used to how they knock me on my arse! How dysfunctional it makes me. This last cold wouldn’t bloody leave either! But it’s ok as I had my trusty Allens Pine & Honey Syrup. It is herbal and kicks cold & flu’s arse! I’ve had that medicine since I was younger. I rely on it more now as after the sah & stroke I’m not allowed ibuprofen & so it’s hard to find cold & flu meds so I look at herbal alternatives.

So I haven’t been to the gym since New Year’s Eve!! Thanks to the cold and to some new muscle spasms in my back.

I’ve been waking between 3 & 4am for over a week with in my back on my right side near my kidney. It been horrendous! I’ve had to go to bed with a hot water bottle so that when I’m woken with the pain I can shove the bottle there so I can get back to sleep. I thought it might be a kidney infection. I was already booked in with my Doc to talk about my lack of loosing weight so I thought I’ll see him about this too to see what he thought. He believes it’s muscle spasm as it’s higher up than my kidney and thinks it’s because of my walking. So has referred me back to my old friends at Danesbury for some physio as I can’t afford private. I’ve also got to have another bunch of blood tests to check my liver, thyroid, glucose, electrolytes and a few others to see is there is any reason for my struggle to loose weight, even though I walk the dog everyday, am normally in the gym 2-3 times a week and am at slimming world.

I woke up this morning with minute pain in my back for the first time in 6 days. I couldn’t believe it. The only thing I did differently last night was instead of having the hot water bottle on my back I had it on my feet. So maybe keeping my foot warm kept the muscles in my leg relaxed and prevented the pain. I going to try again tonight and see.

Anyway I need to get up.

Laters 💋