Waiting is the worst part

       As we approach the end of another year and I reflect back, I have to say this year has been, without sounding to depressing almost a complete fail. 

      Of course there have been some exciting and positive moments, like my involvement in all of the success of the film "Meet the Local Hero", and the very kind invitation to travel over to Spain from my friend Dragos, the director to spend time with him and his partner Ana, then being able to attend the film screening in Barcelona, at the Love & Hope International Film Festival. 

Dragos and myself during filming

      There has been the help and support of various generous people alongside the Arctic ONE Foundation, on my Go Fund me page in trying to help me raise enough funds to buy a new G3 Infinity Knee, so that I could continue riding. 

  

Arctic ONE - what an amazing foundation

G3 Infinity Knee

      And there is the fact I have found trying to write a book quite intriguing, and have enjoyed the journey of reflection and putting my thoughts and memories down. There is still a lot of work to do to get it all finished, mostly to do with grammar and getting a front and back cover done, however the story is just about at a point where I am happy.

      And so to this year and why I consider it a fail. Well I decided to treat myself to a new ebike, way back in May of this year 2024. After doing some research I opted for a Cannondale Moterra SL. I contacted Wheelbase in Darlington and went down to put a deposit down and place my order. I knew with the bike being a new model it would take some time to arrive, however whilst waiting I got my eye on a different model bike, so I decided to change my mind, and opted for an Orbea Rise M10 LT. I custom specc'd the bike down at Wheelbase and then I waited, and waited, and waited some more. Finally after waiting over 6 months the bike had not arrived, and I was informed it wouldn't be here until possibly December or even later. Apparently there was a problem with getting components.

      Now at this point I must make it clear, Wheelbase had done everything they possibly could to get the bike to me, it has had nothing to do with their customer service. I spoke to another local bike shop lately and they stated they have had the exact same problems when it comes to delivery times from Orbea. The same thing actually happened when I was looking to buy my Orbea Gain, I just couldn't get a bike for love nor money at the time.

      Anyhoo just this week I cancelled the order for the Orbea Rise with Wheelbase. There are other reasons, other than the long wait. I currently have stuff going on that have me kind of all over the place. If you are a follower of my blog you may have read that I have been going through some health issues, which funnily enough started just after I ordered a new bike, oh and when my old Bartlett Tendon Knee started acting up and became pretty much un-useable. 

   

Orbea Rise Cancelled - Took way too long to arrive

      Going back to this health thing, I originally thought I had just picked up a really bad bug from work, however after a prolongued period of illness I was to discover this was not the case. 

      It has hit me really hard as my intention was to save up for a new bike, then my knee fucked up so I started the GoFund Me, and then this whatever it is health problem started getting worse. Obviously best laid plans and all that have not gone as I thought. I think I must have been off work going on 6 or so months this year, with what had been described as Ulcerative Colitis by the Inflamatory Bowel Disease clinic.

    Things got a little better following the taking of some predisanone which are steroids, these allowed me to take the trip over to Spain and even do some riding, however upon my return home and gradually coming off the steroids I found I was feeling unwell again, which has meant more time off work and I cannot ride my bike. I just feel so unwell. Whatever is going on has me wiped out, and in so much pain, alongside lots of stress.

      Having been back to the IBD clinic and now been put back on steroids alongside another medication, Salofalk Granules I am now waiting more investigations, this is to be another camera up my hoop, something called a Flexible Sigmoidoscopy and a MRE, which is similar to a MRI, however is apparently better for observing soft tissue.

      My IBD nurse has been wonderful in her support, she says there is a Big question mark over my diagnosis, and I am a trickey customer, due to my past history with the Non Hodgkins Lymphoma and having treatment for that. Now that I am needing more tests  I am obviously concerned, however trying to stay positive.      

      I just feel my whole life is back in limbo again, waiting for a definitive diagnosis, and then to see what will happen. My health has to come first as without it I can't do jack. I am stressed about work, and I know I will have the Department of Work and Pensions on my case and the awful people over at Universal Credit. I was sanctioned £800 the first week I was forced onto this new benefit system, and went from disabled tax credits which I used to receive from HMRC without problems.

       Now recently I have been sanctioned by Universal Credit, 2 months in a row since being on the sick, and I have been informed I owe £900 quid back. The people at Universal Credit took great delight in telling me there is no such things as "disabled tax credits", basically you are treat like a benefit scrounger. I hate it on the rare occassion when I do have to attend the Job Centre, as you have to face the demeaning glare of the so called advisors, who look at you like you are pure scum. I don't get a great deal a month from the government, it's just supposed to be a little help to bump up my wage, to meet the national standard. I have had to reduce my hours at work, as I have been struggling for sometime, so I am now down to 24 hours per week, well when I feel well enough to even go.

      Man this all sounds like doom and gloom and I apologise if you are reading this and thinking " Wow I could do without reading all this negativity", however my blog has always been about telling it how it is. Life for a lot of people isn't like in the movies, or like on social media, where everyone is trying to portray this amazing, yet fake lifestyle. Yes I have had a bit of a whine in my relaying of events, or is it more of just getting my thoughts out there ?

      You see I find writing stuff down helps with my thought process. I know I have faced serious health concerns in the past, so although I am stressed to fuck at times, due to the unknown, I also feel pretty well equipped to deal with what is to come. The best bit of advice I can give anyone, I guess is to talk to someone and try not to keep things bottled up. Although it may feel like moaning and it can get tedious as your whole life appears to revolve around whatever problem you have, talking to someone you trust can help relieve a great deal of pressure.

Of course I also have that internal dark side to me, and if you know anything about me you will know I love quotes. This one is by Lou Holtz who used to be an American football player, coach and analyst, and it goes like this...

" Never tell your problems to anyone... Eighty Percent don't care and the other twenty percent are gald you have them"

      I just keep telling myself take one day at a time and live in the moment, the past is the past and the future is not here yet so it is no good getting all wound up, of course its difficult, however I am a lot better at stopping my over active imagination and telling my inner voice to do one, when it starts with all its negative questions and scenarios. At the end of the day this is just life, and part of my journey.

     I am going to focus on keep going with my goal of getting a new G3 Infinity Knee, and looking ahead to getting a new bike so that I can follow my passion of being out in nature on some beautiful trail or another. It kind of reminds me of way back in 2007 when I knew I was going to have my leg amputated. I bought a new bike, way before my surgery and that was the inspiration to overcome and move forward. 

     Future inspiration a picture for now...

Santa Cruz Heckler SL

For now I will probably wait a little while for a more positive diagnosis, then I will know exactly what I am dealing with, and I can figure out a way forward. Hey its just another challenge Right?

I now kind of have a diagnosis!

Following on from some of my previous blogs about having to go into hospital for some investigations, well I now have a kind of diagnosis, which is on the one hand a relief , whilst upon the other it's like, (and please excuse the language),  it's just this is real life, " fucking hell man, how much more do I have to go through".

I have been off work now since May the 5th, it all started probably way before May if I am honest, however I thought I had just picked up a bug, and as things got worse, maybe possibly a Clostridium difficile infection, known as C.diff.

I won't go into the gory details, however diarrhoea, terrible tummy cramps, back pain, confusion, headaches, joint pain and even itchy eyes, along with a sense of being really fatigued and irritable.

Whilst visiting my G.P surgery I was given a weeks course of antibiotics, which didn't work at all and then when I returned I had to give various bodily fluids and samples and it was the poo samples that came back with irregularities.

My first colonoscopy was a fail, put down to poor prep. I swear I tried to drink as much of the vile laxative drink, Omg! it was disgusting, far worse than the first procedure itself, where yes I chose to be somewhat sedated. I mean who wants to be aware of a camera being shoved up your hoop.

As I awaited a second colonoscopy appointment I was becoming increasingly concerned, about my symptoms and as we all do turned to Google., though I do have to say I did NOT visit misinformation sites, sticking more to NHS verified sites.

Obviously the scary scenario I had in my head was that I would require surgery and have to have a colonoscopy and wear a stoma bag.

The first colonoscopy that wasn't successful I was informed that the results looked like I had Colitis. The second colonoscopy which was a little more uncomfortable and painful confirmed I had ulcerative colitis.

Moving ahead an appointment was made at the Inflammatory Bowel Disease Clinic where I saw a really friendly and supportive speciality nurse. This appointment was probably one of the longest one to one appointments I have ever had in my whole time as a patient, and I got to ask lots of questions and garner a lot of information in moving forward. One of the first things the nurse did when she met me was reassure me in kind words, something along the lines of "Glenn we will help you to deal with this and with treatment you will start feeling much better".

As my blog title says "I kind of have a diagnosis". You see although what I have is classed as Inflammatory Bowel Disease, which stems from something going wrong with my auto-immune system and then my body attacking itself, as for the Ulcerative Colitis diagnosis the consultants report was a little ambiguous. During the investigation it appeared I was mainly inflamed in a certain area and not as expected throughout. All I understand is it has made me feel miserable and I don't normally ask the question "why me" when various health issues have occur din the past, however this time around it has really got to me, so I have been internalising with a lot of swearing "WTF!". In my head I have put two and two together and blame all the horrible medications and treatments I have had over the years which have seriously affected my immune system. Anyhoo no good dwelling it is what it is.

As the appointment went on the nurse provided me with a website that the NHS recommend which is crohnsandcolitis.org.uk which is a very useful and informative site and saves me going through what Crohns and Ulcerative Colitis actually are.

I have now been placed on 2 months of steroids and tablets which I believe are for calcium. The steroids are called Prednisolone and the nurse informed me they can come with some side effects and that I must not stop taking them and make sure I finish the complete course.

Upon taking the steroids, within a couple of days they had really helped and this was such a relief. I have experienced some minor side effects, well unless its all in my head and psychosomatic I just cannot sleep, even though I am taking the medication around 7 am each day, and today, day 6 of taking the meds I am experiencing some low mood. This could be of course as I am bored out of my tree, still not feeling 100 % and missing going out on my bikes, especially as i now have my new Bartlett Tendon knee which I haven't even taken out of its protective box. Add the fact I have lost weight due to being ill so my prosthetic leg is not fitting great again.

Anyhoo the main reason for this somewhat personal blog is to not only tell my story, but to also maybe reassure anyone going through this horrible disease that it is good to talk about it and take support from where you can, in helping deal with it.

For me I have learnt I now have this for life and that it can be controlled through medication and that possibly I may have flare ups in the future once this flare up is settled. As with my Non Hodgkin's Lymphoma, it is no good putting my life on hold, everyday is a new one and it's better to live in the moment rather than worrying what is ahead.