MBR Magazine Feature

Say Cheese

A little while ago I got an unexpected surprise in the form of an email from a lovely guy named Jamie Darlow. Jamie went on to explain that he worked at Mountain Bike Rider Magazine (MBR Magazine) and had come across my blog. He asked would I be interested in tbeing featured in an article for the mag, going on to say that he thought it would be an inspirational and interesting story for MBR's readers.

What a day for my new bikes maiden adventure

Just got my Bartlett Tendon along with new check socket back from Paul over at Pace Rehab on Friday. Due to some technical issues (mainly due to me changing shape in a short period of time) I have been without a riding limb. Obviously this has meant my fitness has dropped off and though I have been out practising both with my running blade and also swimming it's a totally different kind of fitness so today's local loop was a cold, wet, muddy and relatively short 8 miles or so.

John and Glenn

Ok the weather isn't going to get any better I have to get out and run...

Practising in the car park @ South Moor Park

I have been in a kind of limbo of late. My body is changing shape and I have discovered each of my various legs just aren't fitting. That's my NHS everyday leg that I wear for work, my running prosthesis which is in it's infancy, so I'm only at the check socket phase and my Bartlett Tendon which I have found to be way too big.  Pace Rehab are on the job, though it's been a difficult time getting fitted as like I say I change shape so quickly. Imagine if you will, when I'm really active I tend to loose weight, even though I am building strength and indeed muscle, it still means my residual limb shrinks. I then have to be re-fitted, however the time I then spend not doing any exercise I then put on weight and the original socket I was cast for then becomes obsolete as my sizing changes once again. It's very much a vicious circle which almost every amputee goes through. Don't get me wrong I'm not whining here, as I am very fortunate in the support and sponsorship I receive, it's just very frustrating when you want to get out there and get down to business only to have these small but annoying setbacks strewn across your path.

Positive Outcomes

As many of you know it's very rare I write a short blog, some of my friends say "Glenn you don't half waffle on, we much prefer to just skip the text and move along to your photo's". Well in this case I don't have many photo's. The pics  Ern (my dad) had taken came out pants. Not really Ern's fault, it was just that the camera is a small compact, under artificial lighting, late in the afternoon so it was dark and indoors.

Really I should have got more shots when my two new friends Si from Cycle Solutions and Andy from Bike Swanky arrived. But taking pictures was the last thing on our minds as we came in doors practically as soon as Andy and Si pulled up in Bike Swanky's logo'd up van. We just had so much to talk about.

Si (Cycle Solutions),Me, Andy (Bike Swanky) and my new De Rosa Idol

'A leap of faith' - Running Prosthesis Stage 2

Really enjoyed the whole day working with Paul. His positive comments go along way

My appointment to head down to Pace Rehabilitation and their Cheadle clinic to meet with one of my prosthetists down there Paul Richardson, had soon come around. I had arranged with Paul a week earlier to get down to Pace pretty early. This would give us plenty of time to experiment with the next stage of my running prosthesis.
 
I had my alarm on my mobile set for 6:30am, though in the morning discovered I didn't really need it, as I was already wide awake, probably due to the excitement at the prospect of seeing all this new prosthetic kit. I'm sure there are some people out there who just don't get why anyone would be excited at what essentially they would  just see as "a leg". Thing is in the majority of cases as an above knee amputee you need a different leg for each activity you choose to do and without a specific limb you struggle. They are also very expensive and this means quite a few amputees resign their selves to a life of giving up on what they used to do, or want to do, even though they have the potential  in some cases to go on and do even more than they could as an able bodied person.

Running prosthesis stage 1

I'm on my holiday's, not going anywhere tropical or warm or even anywhere in particular really, though I do have some pretty exciting stuff going on in my life at the moment which is a bit closer to home and will involve travelling down to Manchester next week. But hey lets not jump the gun, let me start at the best place the beginning.
 

Paul blessing my stump lol

I love this shot it's so funny and I'm sure Paul will also see the funny side. I wasn't sure if he was blessing my stump or was a practising faith healer with the promise of "I can make it grow back".

"Hey Paul I'll just settle for one of your awesome sockets m8"

 As many of you will know I have been trying to raise much needed funds along with Arctic ONE to put towards the completion of a running prosthesis.











How all this came about was after visiting the US, last year and getting some really great advice from a gentleman named Scott Clark who is a prosthetist over at Baker Orthotics and Prosthetics who are based in Dallas Fort Worth TX. Scott had asked would I like to progress into doing other activities other than riding a bike and my reply was "sure, however as you know prosthetic gear is very expensive and I just can't afford that kind of layout". I went on to explain that our health system works entirely different to the US and indeed many other countries. I had tried contacting various companies and people, but always came to a dead end, so basically I had put the thought of ever being able to run to the back of my head, much preferring to concentrate on what I could do, rather than waste negative energy being consumed by what I wasn't able too (Notice I said unable to and not can't ) That's the thing with a lot of people they quite often get worn down by the whole health system when they don't have some kind of funding in place, and aren't able to obtain the right equipment to help move them along in their chosen direction. These people quite often then get a Negative "Can't" attitude and as we all know it's pretty much down hill from there.

Welcome to the North East Pace Rehabilitation

 A few weeks ago my good friend Scott Richardson who is the P.R Guru at Pace Rehabilitation informed me that they were going to be having an open evening at the Lombard Physiotherapy Clinic, which is situated in West Moor, Newcastle and would I like to attend as a guest on behalf of Pace along with a few of my friends and my dad, Ern.

Kielder with friends old and new...

What a cracking Crew

 Right to Left -Steven Hackworth ,John Chambers,Al Roberts,Luke Troy,Mark Boon Purvis, Steve (Scotty) Scott,Kevin Turner, Carl,Mark Eagan, Glenn Johnstone,Lee Sheridan,Ian Carr, Davey (twice around) Purvis.

My friend Al said

As you will see it's been a little while since I last wrote a blog. There's been a lot going on, however it's not really been stuff I've felt like writing about as it's been mainly depressing,sucky and bad stuff. My friend Al says I should still write about this kind of stuff as it gives other people and insight into how things aren't always rosey, even though I am very lucky in being able to do more than most what with having great support and sponsorship in my prosthetic needs and being also supported in my future endeavours. Al went on to say I wouldn't be surprised at just how many people may relate to how I go through things and then  always find the strength to bounce back. I have to admit at the moment I don't feel very bouncy, never the less here I am. As I have said in the past, popping stuff down also helps me reflect a little and can help me figure out just where I'm going and what I should be doing to get there.

This of course won't be one of my most exciting blogs, however I do hope for those that read it you can see that all I am trying to get across is that there is light at the end of any tunnel.

One of the hardest things for me when I'm feeling depressed less than motivated, un-enthusiastic or can be bothered to do anything is knowing I'm being an asshole. It's as if I can step out of my own body mentally and I'm screaming to myself "Omg just pull yourself together, your an absolute nightmare to be around and I don't like you". I suppose this message must get through, however it doesn't pull me out of my mood, no it just makes me realise that yeah actually I am not much fun to be around so I tend to cut people off, don't go out as much, don't blog, don't Facebook, in fact I don't do much.I guess I don't want to be a burden and if I can't stand being around me, then why should other people have to put up with me. It's weird as it almost always happens around winter time. It's like some seasonal clock that ticks away and then come that time of year bang, happy head off, root around in the bottom of the wardrobe and pop on my seasonal downer head.

Even as I write this I'm thinking "yeah but it doesn't have to be that way" and "hold on a minute give yourself a break, there has been a lot of shit going on over the last few weeks". Anyhoo the purpose of my blog isn't to have you all feeling sorry for me, but I suppose it is a bit of a place to share what's going on in my life and that of some of my family and friends and of course that isn't always going to be good stuff all the time.

As anyone who reads my blog will know I lost my best friend a few weeks ago. Mr Hink's has been such a miss around our house. Well this didn't help how I was feeling. Following that I discovered I had 3 lymph nodes up in my neck. One of which has been there for years, right in my clavicle area. I hadn't ever been able to feel it before, even though it was the first one I was diagnosed with way back in 2008. Now though it's up and I can feel it. They are quite small, only being around 1cm in diameter. I managed to get in and see the specialist, had bloods taken and everything appears ok. I do have to keep going back for more regular check ups. You know what scares me the most about this Non Hodgkin's Lymphoma? It's not the treatment or the disease, No it's the recovery period. I hate it when your relatively healthy and then you have that whole period of illness. Recovering is the hardest part. But anyhoo lets not spend valuable time wasting energy pondering something that hasn't even happened. Something I have learned is that way too many people live in the past with the what ifs or wishing they had done something different, or look to the future planning ahead for events which may never happen.The "Right Now" totally slips by and they are unaware's, and its the Right Now which really counts.

A good few weeks ago both Al and myself decided to go biving.  John and Lee our other friends couldn't join us, John having done something to his back and being in lots of pain and Lee having just undergone surgery for a hernia. So Al and I set off ourselves and camped up at Smiddy Shore. I didn't blog about it as this was the start of me feeling crap. Anyhoo that night we were camping out I realised I had forgotten to bring my medication for my phantom pain. I had left it in my other back pack. "aww never mind I will get some tomorrow when I get home". So biving trip over I was feeling decidedly unhappy. My riding socket had rubbed me raw for some reason all the way up and all the way back home so I had a nasty sore on my hip. At the moment I'm riding with a check socket that Pace has made me and as with any check socket it's a temporary thing to iron out the areas where it's not fitting and then when this is sorted move onto what should be a comfortable final socket. So moving on I get home and figure "you know what my phantom pain isn't that bad I'm just going to quit my Pregablin". Now I should have known better as I once did exactly the same thing with another neuro drug back around 2009/10 and it sent me mental.

So long story short over the last few weeks I have done cold turkey coming off these bloody awful tablets. I've had all the usual withdrawals, but at least now I am drug free and aim to try and keep it that way. Yeah I have phantom pain and it's horrible, but I would much prefer to have the pain than be addicted to something that screws with my mind and even when I'm taking them doesn't do a great deal to help.

Well anyway there is a little insight into why I haven't been around. If anything I hope anyone who comes across my blog and reads stuff like this can see that just because I have all this good stuff going on, what with being sponsored by both Pace Rehabilitation and Brian Bartlett and then of course also being aided in my fund raising to help get me a running blade by Arctic ONE, that everyone can go through dodgy patches in their lives. Everyone is entitled to feel a little sorry for themselves. Saying that I would be a hypocrite if I didn't then go on to say one of my mantras in life is "that out of every negative, there is a positive, you just have to look hard enough". So what is it in this case? Well I don't have to think too long and I can come up with lots. For one when you're on the bottom the only way is up. When your down, you discover what good family and  friends you have, oh and you also discover that people don't just like you because you try to put on this act of being happy all the time and being the life and sole of the party. They like you for you and all your quirks.

I've found it's been really helpful chatting to my various friends near and far and when they ask "Hey Glenn how are you doing?", instead of replying in typical fashion "Oh yeah I'm ok thanks", actually saying "you know what I haven't been feeling so good". I guess I'm of the opinion if no one really knows then how can anyone help.

After all sometimes all we need is a friendly ear and someone to talk things through with,someone who doesn't say "pull yourself together and stop feeling sorry for yourself", but rather says "well we are here for you".

It's to those people I say a huge thank you too...