The road to recovery has taken a left turn & the end is nowhere to be seen!

At the end of 2017 I wrote about how things have been with my legs & lifestyle changes (End of 2017 & looks like I have more lifestyle changes to come in 2018), well unfortunately not everything has gone to plan as nothing has changed with work/life balance & legs continue to get worse & back onto my stick & unfortunately it has also had a knock on effect in everything else in my life especially cycling.

So at the end of 2018, I finally got to have my long awaited MRI scan after Christmas & in January I got a letter a week after the scan & it was an eye opener & scary too.

A bit of a shock is an understatement, I sure hell did not expect this to be honest. Just expected the same as what was said 30yrs ago with my left leg.

Well I went to see the specialist today, what I was shown has simply put my life in a spin!

Firstly I was shown these images taken from the MRI scan which I took photos of & highlighted the spinal cord.

As you can see the spinal cord has been severely compressed & likely has been for many years. As for the cause, well it turns out to be a shit storm of reasons! Firstly I have narrow channels for the nerves to feed from the spinal cord, thick bone structure but what I was not expecting to be told was the spinal cord is being pressed by the hip socket due to onset of osteoarthritis.

So the prognosis is simple, leave it be & eventually I will loose the use of my legs & possibly more in that area from the waist down as already having symptoms it is not just the legs being affected. Or as highly recommended have an operation to decompress the spinal cord. This will help relieve the pressure on the cord but as made quite clear, it will not undo any damage already been done & could actually do some damage during the procedure. There are risks like all operations but to be honest other than death there is nothing that won't happen anyway if I don't do anything about it.

So within the next 4 to 6 months time I will be having the operation & honestly it is freaking me out a bit but there is not really any other choice. But it's after the operation that's gonna be the test for me, the 2 days in hospital I am fine with, as well as having someone look after me at home for 1-2 weeks. It's the time I have to take off work that is gonna be difficult, I have been told I am to stay off work & take it easy for around 3 months & that includes no cycling & after that period I need to return to work gradually & same goes with cycling.

I have been told after the operation, don't expect the legs to improve, maybe slightly worse but should not be in pain any more. With this & now know I have osteoarthritis, it is clear I will likely not be stick free anymore, tho make a damn good try in being stick free. What it does mean is I have now a constant battle to keep walking & cycling & no end in sight to win this battle.

Make me quite glad I finally got my Wet Room when finished this week as gonna need it but I do know now, the new eBike is needed more than ever!!

Pain, pain is not my friend...

For more than 1/2 of my life pain has lived with me but pain isn't my friend. It wakes me in the middle of the night when it feels like it, it drains me when I have to fight it, creeps up on me when I think I'm doing okay, tries to control me when I want to have a normal life.

 

But pain isn't my enemy, it doesn't control me, it fuels me, it's makes me fight, it gives me the fire to push the boundaries & determination to battle on.

People can see pain as a bad thing, I see pain like a companion that annoys & angers me but also encourages me to push harder, to beat it at its game. Pain has changed my life in ways I would never thought possible, changed me in ways as years gone on & will continue to do so for the rest of my life.

But pain has made me a better person, a better understanding of others around me. Pain is not my friend but it won't destroy me & no matter how tired it makes me, it will make me stronger the more it pushes me & hand me more challenges to overcome.

 

Minor blip in my plans....

Around 9 month ago after years of physio & determination, I thought I had finally conquered my disability, getting to full health & be stick free once & for all. Even getting on well with cycling & long rides with no issues after.

Well 3 weeks ago that all went to pot when my knee decided to go on me again after nearly 2 yrs of physio to sort it. It went so much so I was in agony & had to make a visit to the A&E where I eventually came back out on crutches & strong painkillers.

So for the first time in a long time I felt somethings I haven't felt in nearly 2 decades when my leg first went bad, disappointment & despair. It didn't help that the painkillers were making the mind all fuzzy & for the first time since I moved to Essex I wished I was back at Farnham, but not for what you might think. It was the flat I am thinking of, being on ground floor & having a garden is what I am missing at the moment. So I can relax & feel OK with it all as the cats would've had freedom to go in the garden & some where I can recuperate. Now there's nothing wrong with my current flat or it's location. Its the fact its in need of decorating & no garden I can easily get to as I'm on the 1st floor.

After 2 weeks, I finally came off the painkillers & crutches but still using the stick. Seen the GP to get a referral to a specialist as obviously the physio isn't working. And my brain is trying to adjust back to how I was years ago & I'm having issues with this, basically I am getting sick & tired with all this. I just want to get on with how I was doing before the knee went again, I aint as young to re-adjust again like I was 20yrs ago & really need to get this knee sorted.

At the moment I am feeling I wish I never had the damn operation to get me stick free as now going back on them is doing my head in & feel like I've been cruelly teased with a stick free life right now as I am back to how I was almost a decade ago & not know just yet when I be stick free again if at all.

So out of this I do feel I need to focus more on certain things, like everyone else we all have this where we have so many things going around in our heads & sometimes it's too much & need to re-evaluate & decide what is important right now. For me I need to sort my leg, a job & generally get my life back on track. The rest will have to wait or give way to what is more important.

So for now, just watch this space as I dunno how the next few weeks, months or years will pan out. I am hoping to try a short gentle cycle ride in a week or so time to test the waters to see if knee can cope. Then go from there, but most of all try not get stressed as I know that never helps the recovery.

On 2 legs...

For those who been following me for a while know about me being on walking sticks & working on getting off them which I finally did almost 2 weeks back. But some don't know the background to all of this & some have asked questions or not as they feel embarrassed to or not care.

Well for those who do want to know, I thought it is time I put all of the years into 1 blog so it will be easier to just send this blog & let whoever wants to know see it all. So where do I start, well I guess we start right at the beginning & I think we should start with the prequel.

Well, I when I was little I wasn't on sticks, in fact I was full of energy & fully fit.

So as you can see, I was quite fit & a good runner etc. I also started getting into cycling in my teens & bought my first bike with my own savings.

Was a good bike to start with & got me into cycling, even did my first sponsored cycling though on a borrowed bike as this one broke just before the day.

This got my parents to buy me my best bike I have had & still miss it now, the Raleigh Maverick.

And I had many many years of use of this bike with my friend who also had one too. I did get into motorbikes too but I still enjoyed cycling. By the time I was 18, I passed my motorbike tests & got a full license & started getting a strange tingling down my left leg that didn't go away & was the start of the whole event of changes for me.

So now at 19, I am starting to get tingles down my left leg & shooting pains from the hip causing leg to give way. GP didn't have a clue so sent from one specialist after another, X-rays, MRI's, Ultrasounds, etc. Eventually they decided I had a trapped nerve in Hip joint & to free it involved an operation with a 50:50 chance of success, being young I decided to go for it as after all if it failed I was young to adapt & at first after the operation it did work but slowly came back & then had another operation & again was OK & again it came back but worse than ever. 

By this time I was in a good steady job with McDonalds as Dining Host / Party Organiser & doing well with own rented bedsit, having fun as you do in your early 20s. But this leg issue was hampering me at work so I was offered a 3rd & final attempt to sort it. I did go for it as I wanted to get fixed to keep my job; unfortunately it didn't go as planned. The nerve was so damaged from constantly being trapped; it had frayed & snapped when being freed off again. And with nerves, you can't just repair them like a frayed wire so no more could be done. So as of December 1993, I had now become reliant on a walking stick, loads of painkillers 24/7 as I was now in pain like I have never known before. The best way to describe it is like phantom pain when someone loses a limb, where they can feel the pain on the raw nerves as if the limb was still there...

So the next 4yrs, I wasn't working. I was spending 3 days a week at Physio doing pain management, trying to get off the painkillers & get a job. No job offered as to be expected as most saw me unfit to work whilst going to hospital, Conservative Government did though so had to keep looking. Eventually I did get one, Dominos Pizza as the kind Canadian franchise owner was happy to let me try out the job first & kept me as I did better than the others. But it was a short term job as I was going to College for retraining in a Disability College. Which proved quite helpful & into a well paid job for the quite a few years.

So jump a few years, I'm in a well paid job. Got a flat, moved to another flat, got married & divorced, all the usual stuff everyone does but as a disabled person using a walking stick. I kept doing my motorbiking & almost everything else; cycling wasn't in my life anymore & told it wouldn't so bike were sold off. I learnt to be a stubborn person to try everything once to see if I can do it, even if it was done slightly different than a regular person would. But I never let the disability get to me; yes I had my dark moments. Who doesn't? But saw the disability as a challenge, a way to get my creative blood flowing in new ideas to do something that technically I couldn't. From DIY, riding motorbikes & even riding horses.

So all was it should be for me, up until 2005 when I started to get a new pain in left leg & unrelated to the damaged nerve. And again it was yet more tests & just as they thought it was a damaged hip joint, they discovered something on a detailed X-ray to the cause. My bone was turning to jelly, a Bone Cyst. 

So I was booked in fast to get it sorted as it was on the verge of snapping, so no kicking, jumping, falling over, etc in case it snaps. Gave me the heebies thinking about it. But this problem was going to be a blessing to me, for the specialist doing the operation offered me another chance to fix the nerve as it was by the area being operated on. His words were 'things have moved on in the technology & can't make it any worse' so I agreed. Had the op with a few hiccups with recovery so spent 9 days in hospital. But all I can say it was all worthwhile.

Now it was all about healing & rebuilding my leg, partly coz they really went to work on my leg & couldn't move my toes for a month. Physio was hard work & soon started to get leg stronger, pain from damaged nerve had gone but as I was putting more weight on my leg the knee wasn't coping with having to take the weight again. I did try to go stick free in 2009 but didn't work out, was too soon for the knee & actually made it worse.

So I did more physio again & again, at different hospitals as I had moved to Chelmsford, Essex in 2010. But this proved to be the best bit as it was suggested during physio in 2011 to take up cycling again as a low impact exercise as I had no trouble with the exercise machines. So in June I went & bought a 'to work on' bike to suit me when I built it. 

So I rebuilt it, made it to suit me & get me fitter, stronger & slowly become better with my bike which is now known as The Beast.

But still even with cycling, doing events like 30 Days of Biking & sponsored cycled ride in April 2013, I was still on my stick. Knee still gave me agro, so I just kept on pushing the limit just a lil bit at a time. Knowing I will get there...

Well after I moved to Colchester in May, that limit went up! Colchester is definitely a hilly place compared to Chelmsford. And on a heavy Beast with shopping, that sure was a workout which proved to be worthwhile. I didn't go to nearest supermarket to buy my shopping, no I went to the furthest away. This meant pulling a 20+kg weight of shopping on a 25kg bike over the hills, this was hard work but it got easier as my leg & knee improved even more. 

So I decided it was time to go & try working part time, finding a job though was proving unsuccessful. So from August I started doing a couple hours a day working at Re-Cycle, getting bikes ready to be sent to Africa. Also meant I was standing on my feet doing the work & also was cycling 7 miles each way to this place too. This proved to help a lot. I also found myself another bike to ride, a Trek 7300. A lighter bike & definitely up'ed the game for me in cycling. So this is where I decided 2 weeks ago to ditch the stick, I felt ready too & made it public. 

 

Knee felt ready too, though it does grumble a bit when I push the boundaries. But as long as it is holding out & getting stronger, I will stay stick free. I do still use the stick for when carrying heavy shopping, eventually I will do it stick free but til then I ain't gonna be silly about it.

So there you go, a brief run down on me being on sticks. Sorry if it's a bit long to read, but if I included everything it would be a lot longer & I do mean a lot longer. But I hope you now have a better understanding, why each small improvement (trivial to some) I do when cycling means so much to me. Each step forwards is like baby steps, eventually it will be bigger steps. Every time I go out now, I feel strange & recently found out going into a busy shopping centre is stressful due to blinkered shoppers not looking where they are going & me freaking I could be knocked over & set back onto sticks. But so far it has never happened (hopefully never will), I will get used to walking stick free & hopefully before Christmas as if I don't I'll be a nervous wreck. lol

Well thank you for reading, those who follow me on Social Network sites I'll keep boring you with my update. ;-) 

Kidding, I know you're with me on this, for me to succeed. I still get a lump in my throat when I think of where I was & where I am now. Its hard to believe almost 20yrs ago I was told I'd never walk stick free again & definitely never cycle. It shows now how you never know what is around the corner. It's been an interesting journey, not one I would want anyone to take but I know this journey I took has made me a better person for it.

I could keep on, but I will end the story here & thank you for taking the time to read it. TTFN.

Leg Update

As many already know, January 2008 I had an operation on my leg that will change my life forever. And over the past year I've been doing physio & excersises at home to rebuild my leg muscles & strength all round as well as trying to walk again.

Well after 12 months of hard work & loads of support from my darling Jules with her magic hands massaging my aches away as well as family helping out with things I couldnt do. I'm practically there! I was hoping all to be done by December 2008, but it proved to have been an more invasive operation, so for the 1st few months is was no more than dead weight i dragged around whilst on crutches.

2008 has definately been a turning point in my life, its been hard & well worth it. For now I am trying to go to the Gym to work on improving my leg strength, improving my balance. Hobling around the flat, almost walking without the stick & trying to get a bicycle for when I'm ready.

So whats next? Well I am going to look at going back to work after some retraining curtesy of the Job Center in a month or 2. My flat is on the net to try swap it with someone who wants to move to Surrey from Essex so I can live closer to my beloved (hoping it dont take to long). As well as getting the flat finished painted (doing kitchen atm) so it looks all nice for the swap! Cycle alot more often than I did 18 yrs ago! You dont appreciate things as much until you loose it, now I'm getting my legs back I sure want to make the most of it!!

So here's to 2009, where the changes keep on coming! And thankyou all for your encouragements & especially to Jules, she's had to put up with the most of it!! Love her so much!!!! xxxxx

My Bone Cyst Op’

As I've have said before, I've got a Bone Cyst in my Femur & needed an operation. Well 2 weeks ago I had the op & its been a slow long slog getting back to being myself.

Well they have cut out the Cyst, took bone off my Pelvic area as a bone graph but from the front, which surprised me as its a more tender area. With this bone sample, they mashed up & injected back into where they removed the Cyst. Then put a bracket into the ball joint & along the femur to hold the bone together.

The Op was done in the morning & I awoke 10 hrs later as they had trouble waking me! Should've told them I sleep like the dead as it is! lol

Staff were very friendly & food was pretty good, considering its a hospital, unfortunately the op was more envasive than expected & it was a week before I could get out. Didnt help that a couple days after I suffered chest pains (which was later diagnosed as stomach cramp) then internal bleeding where the bone gragh was taken (from blood thinners given for the chest pains as they thought I was having a clot in the heart or lungs at the time of the chest pains & docs being cautious!), had to be knocked out with Morphine after 2 hrs of excructiating pain!

Well now I'm home & have been for a week now. Staples were taken out today & i'm slowly getting the use of my leg. 1st week was like having a dead weight instead of a leg! lol Now I can just move it, bend knee 45 degrees & lift it an 1" off the ground. As you probably can guess I'm on crutches until my leg is all healed & fully functioning. Physio starts in 3 weeks once all is fully healed!

Now I like to thank my darling Jules for her support in all this, she's been looking after my dog during all this & is spoiling him rotten. Thanks for being there at the weekend after the op & visited me at every moment possible til she had to go back home. Also thanks for making my place nice & tidy for when I get home, big hugs are waiting for you!!! And thanks for being there to talk to, giving me praise & support!! It helped alot!

Also thanks to Tori for helping look after me the 1st weekend & my Mum for the rest of the week, she's been cooking a pile of meals for me & making sure I have everything handy & just have to reheat my meals from the freezer.

Also Jules is coming down & now doubt gonna bully me into letting her help me! lol

At least this time I can thank her personally when she's down!

Its been a hard few weeks, but with their help now & in the future I will make a full slow recovery. It will be a hard slog, but with all the support I'll get through it!

3 steps forward & 2 steps back! (Update)

Well if you dont know by now or read earlier blog, I have a problem with my left hip & have done for over 18 months. This is on top of a disability I have had with left leg for well over 15 yrs.
I went to see Specialist after he tried over a month before an injection to relieve the problem which wore off 2hrs later. Even tho' injection wore off, it was a success. Well at least to the specialist, as it has now shown roughly what is wrong. Specialist told me its 1 of 2 things! 1st it's a lump on the ball part of the hip socket or 2nd, a tight muscle attached to the socket so it's in tension & overstretching when moving. This is great to me as they now know what to look for, now the bad bit! They wanted to do a 3D scan of the ball socket, then send me to another specialist who an expert on both problems.

Well they had done a 3D scan of the ball socket & sent me to another specialist who is an expert. This Specialist was then to decide on how to go about fixing the prob. But once I got there to see this Specialist, it all changed!
The Specialist has reviewed my scan & wanted me to have an X-ray there & then, so I did. When I saw him again, he decided that the problem isn't my hip but a Bone Cyst. Now this was dismissed 2 yrs back coz it was small. But now been told its grown & still growing & is across more than 1/2 of the cross section of the bone. Thus the pain & left untouched the bone will snap!
So I went into Hospital few weeks later for an injection to kill it & shrink it. The injection didnt work, so now its the operation!
They are going to cut out the Cyst, take bone off my Pelvic area as a bone graph which they mash up & inject back into where they removed the Cyst. And because of this, theres not much to hold me up in this cross section (25%). So they have to pin the bone together to stop it just snapping!
Completely threw me at the time, not what I was expecting! But now I had time to think, I just need to get on with it & let them do whats needed! I cant leave it be for it will get worse & break. But I am kinda reluctant to the idea of the op & bone graph!
Now as you can understand I'm not to happy with this news, coz until its sorted my leg is not only in pain but can snap with any force against it (No Jumping!) lol.

UPDATE

Well Xmas is coming up & I now have a date for Op'.
Its in January & I'm in a slight flap preparing for not only for Xmas but the op too! Apprehensive atm too, biggest op i've had too!
But if you look at the pic in the Picture Album named Cyst, I've circled the cyst & you can see why it needs to be done!

3 steps forward & 2 steps back!

Well if you dont know by now, I have a problem with my left hip & have done for over 18 months. This is on top of a disability I have had with left leg for well over 15 yrs.
Today I went to see Specialist after he tried over a month ago, an injection to relieve the problem which wore off 2hrs later. Even tho' injection wore off, it was a success. Well at least to the specialist, as it has now shown roughly what is wrong. Specialist told me its 1 of 2 things! 1st it's a lump on the ball part of the hip socket or 2nd, a tight muscle attached to the socket so it's in tension & overstretching when moving. This is great to me as they now know what to look for, now the bad bit!
They want to do a 3D scan of the ball socket, then send me to another specialist who an expert on both problems. This Specialist will then decide on how to go about fixing the prob, but I been told that it be something like this.
"A single operation to repair ball joint by pulling it out of the socket, sand off the lump (laymans term) & push it back in! If they find its not the socket & it's the muscle, so they can loosen this muscle by cutting it & let it grow back together to make it longer."
Now as simple as it's sounds & great it's going to be sorted, its crossed my mind as I told my mum. IT'S GONNA HURT LIKE HELL AFTER!!! More than it is now!
And not only that, but on checking both procedures. Its gonna take months to heal & I will require someone to look after me & practically become housebound! Talk about screwing up my plans for the new year! lol
But I cant let that stop me! If I have to go thru this to sort my hip out, then so be it! Something else was mentioned during today's meeting, the operation could fix my existing problem with my leg, but it's only a slim possibility!!!
Now isn't that an incentive! For then I can get back to my life & go after my dreams!!!
Now! All I need is the pain in my ribcage fixed after 6 yrs & I be on cloud 9! lol


UPDATE

Well they have done a 3D scan of the ball socket & sent me to another specialist who is an expert. This Specialist was then to decide on how to go about fixing the prob. But once I got there to see this Specialist, it all changed!
The Specialist has reviewed my scan & wanted me to have an X-ray there & then, so I did. When I saw him again, he decided that the problem isn't my hip but a Bone Cyst. Now this was dismissed 2 yrs back coz it was small. But now been told its grown & still growing & is across about 1/3 of the cross section of the bone. Thus the pain & left untouched the bone will snap!
So now I'm off to go into Hospital in the next few weeks for an injection to kill it & shrink it. Should take 3 months to do the job, all goes well.
Now if it dont, well the next method aint so nice! They cut out the Cyst, take bone off my Pelvic area which they mash up & inject back into where they removed the Cyst. And because of this, theres not much to hold me up in this cross section (25%). So they have to pin the bone together to stop it just snapping!

Now as you can understand I'm not to happy with this news, coz until its sorted my leg is not only in pain but can snap with any force against it (No Jumping!) lol. And aint exactly looking forward to the idea of option 2 if injection fails to work. Read up on it & injection isnt a perfect way to sort it, but is best to try 1st as no operation required.

Thankfully when I came out of the Hospital, I had a good friend to support me emotionally as I was a bit of a wreck. Many Thanks to her for being there & helping me!!
Completely threw me at the time, not what I was expecting! But now I had time to think, I just need to get on with it & let them do whats needed! I cant leave it be for it will get worse & break. But I am kinda reluctant to the idea of the op & bone graph!

Also am sorta thinking how can this cyst 1/2 way down my upper leg, cause pain in my hip? Guess its a game of elimination & the cyst needs doing so we will see! Thats all for now, enough of my rambling!! lol