The countdown begins…

In 3 days, or 4 including today, I will be taking that trip again to East Grinstead. This time for a few days (5-14 – depending on pain!). I will be having my TMR surgery. I must admit, a fair amount of trepidation this time. I’m not unfamiliar to general anaesthetics, this will be my 10th! Yet for some reason, this time I’m a bit scared! I think it’s because I will be so far from home, and my wife won’t be there when I get back to the ward, which so far, she always has been. But mixed with the anxiety is a ton of hope. Hope that this will work, and I will be able to wear flo (my prosthetic) again. Even if it’s just some of the time! I’d even take 20% right now! I’ve accepted the fact (mostly!!) that I can not run again, and my sports will need to be slightly different, but I can’t accept never walking again.

The above photo was taken last week. Yep, I’m back out there, training for my first half marathon using my wheelchair. On the 5th of September I will be wheeling through Bridgewater in their half marathon. I can’t wait. Then who knows? Hopefully a marathon next! My wife will be running it too, although she will probably have time for a cup of tea and a nap at the finish line, by the time I get there!! But it’s all good fun.

So with the pending hospitalisation in mind, a few people have asked what the most important thing is for one to take into hospital. So I have thought of a few, which I wouldn’t be without.

1) Ear plugs. Hospitals are supposed to be a healing environment, but trust me, you won’t get much sleep, especially post operation. As an ex registered nurse, I can tell you, I was one of those annoying people who would wake my patient at all hours to take their blood pressure! To put in needles, remove needles, pop in tubes, remove tubes, change dressings, check your daily oblutions! You name it, the list is endless. Plus, unless your accustomed to communal sleeping arrangements, you can pretty much expect that half the room will snore! So, ear plugs are a definite necessity.

2) My portable dvd player and a ton of dvd’s. Why do I take this, in this technical age of tablets etc.. Well you may be surprised to know that not all hospitals will let you have their WiFi password, and the tvs can be hideously expensive, up to £20 for 3 days in some places. So as a fail safe, I take my own entertainment.

3) Your own snacks and Tea bags! If your like me, and allergic to gluten, you can never tell what food your going to get. Although I have to say, so far it’s been pretty ok, the snacks are pretty limited. When I’m in pain I struggle to eat, and when I’m nautious, even more so. So I like to have my haribo to hand, which is about the only thing I can stomach when pain and nausea come calling. Tea bags… well, I can blame Piers Morgan for that one. I never used to be a Tea snob, until one morning, whilst watching GMB, good old Piers mentioned he only drinks Yorkshire gold. So one day I decided to see what the fuss was about… Needless to say no other Tea bags will now suffice, and as a result I will be taking in my own bags for a proper cup of tea!

As for other bits and bobs, it’s up to you. I would of course recommend pants and pyjamas, and some good reading. I will be taking in the first part of my manuscript to continue the editing process, which never seems to end! Plus a couple of books to read.

So for the next few days, and for a few before, I am on strict isolation. The boredom is setting in… although I have lots of work to do, I miss riding my hald bike and wheeling. But not long now and if all goes well, I will be back to it. Have a great weekend all 😁

It’s a Neuroma!!!

Finally, after two years of saying that I have pain, other than my crps in my stump, I finally had an MRI. The results showed a neuroma and a second area of thickening around my stump. Finally, after being rebuffed, ignored, made to feel awful… I was right. So, I recieved a call from Bristol to tell me the news. They said that there was a few treatments, but we’re still reluctant to do surgery or even touch it because of the CRPS! This is despite the fact that it would seem that the Neuroma(s) are setting of my CRPS. People are so focused on not setting off the crps, that they are prioritising it over long term treatment, basically confiding me to my wheelchair for life! Luckily for me, I had my appointment in East Grinstead, and the amazing team there see things differently. They believe in treatment, with the realisation that my crps may get worse, but they inform and let me decide.

During my visit, I had an ultrasound, which was thoroughly explained, and had the consultant present. I then saw my consultant, Dr Tania Cubison. She was amazing. She explained everything. I saw videos, photos, and was told the actual facts and statistics of probability of recovery. I felt fully informed, which I have to say, I’ve never had before. I don’t know if it’s because I’m a nurse, or weather others have had such treatment, but at my local hospital, I’ve never had as good a treatment as I did at East Grinstead. After I saw my Dr, I then saw a anaesthetist, who was again very thorough, and explained everything. Now this is a big thing for me, as when I went in for my amputation, I was taken into hospital 4 days before the surgery to have a block by the pain Dr, who didn’t show up to do it! As a possible consequence of this, my CRPS came back! The anaesthetist resured me that he will show up, and couldn’t believe that someone, or a service would be so unprofessional. He plans to put in a block the day before the surgery, and then they will place two other blocks when I’m unconscious. He stressed the importance of doing this so that they can ensure it works, and doing it right before having surgery, doesn’t give you a gauge of weather it is placed correctly, which is what happened to me!

Above is a picture of a neuroma.

So then I was off to see a pre op nurse. They were also very nice, and seemed quite knowledgeable. The were very thorough. I have never had bloods taken before in a pre op assessment either. I have also never been made to feel so welcome. I have to say, I am very glad I will be going there for my surgery. The thought of going to the Roayl Devon and Exeter again, where they’ve ignored me, treated me like a sub human, and neglected me, wasn’t very favourable. So this should be happening in August, we think. The plan is to do TMR surgery on three of my nerves. There will be an approximately 8-10 inch scar on the back of my leg. I have been told to expect a hospital stay of 3 days to 2 weeks, and their goal is to ensure my pain is under control before they kick me out. Another refreshing change…

We have a plan… I couldn’t be more relieved, and grateful to my friend Maggie, who without her referring me to this amazing specialist Doctor, I would not be in this fortunate position. It is amazing that I’ve had to go so far away, just to be taken seriously, and to have treatment. It angers me, as I’ve worked at the RD&E for almost half of my life, including doing my nurse training there. I’ve been a registered nurse there for 14 years. Yet I received such diabolical neglect, that they were just going to leave me in pain for the rest of my life. I still have not received an appointment with the pain team, despite 2 years of urgent referrals being sent. This is how poor the treatment has been for me… having none! Anyone with a Neuroma will tell you, it is excruciating, as is CRPS, and one sets off the other.

All I can do now, is wait for the date. I couldn’t be happier with East Grinstead. Just wonderful.

Indignity!!

So, right now I’m sat in the waiting room of the accident and emergency department in Exeter. I was bought in by ambulance earlier (will sat why in a minute!). Now I have been wheeled on a hospital wheelchair, one with no chance at self propulsion, into a waiting room, on my own, and I’m dying for the loo!!! I never wanted to feel the way I do now. Completely useless and cast aside. I have literally been dumped. I am totally stuck, unless I crawl across the floor. My wide is at work, and although will be here at some point, I’ve now been waiting for 2 hours! Whilst sat here a number of nurses and doctors have wondered passed. I tried to get the attention of one of them, to no avail. I feel so helpless! Why would someone just dump someone like this, when they know they are immobile?

So, earlier today, I was sat drawing, as usual, on the sofa, when suddenly I had chest pain, then jaw pain, and my heart rate escalated to 206. It felt as if my heart was trying to break through my chest. I felt nauseous, light headed and short of breath. It was absolutely terrifying. I have never before thought I was going to die. Now the nurse in me went straight to impending doom, and with the symptoms it was hard not too. My mouth was dry, my fingers numbing and I was cold sweating. I thought I was having a heart attack. Now, as I’m still here, it is evident that this I not the case. I think I had a panic attack. Very strange considering I was just sat on the sofa. Last time I checked, drawing was a relaxing activity, and although I had Buffy on in the background, it is not scary enough to trigger a panic attack. So another perplexing moment!

So, the paramedics arrived, and with chest pain and a heart rate of 206, they bought me into A&E. Turns out, it was the wrong day to have an episode of any kind, as it is so busy. So, I was taken into a room, they did my blood pressure, asked a bunch of questions to which no one listened to the answer. They were too busy sorting out a drunk lady in the corridor! Next thing I knew, I was dumped in the waiting room. No explanation, no dignity, no help.

Now, I’m still sat. Needing the loo. Nowhere near a toilet, and even if I could see one, no way of getting there! I asked the paramedics to bring my chair, but they said I didn’t need it, and to be honest, at that point I felt as if I was going to pass out, so didn’t think to question it!

I had the pleasantries of two children noticing my lack of leg, who proceeded to amuse themselves greatly with gears of disgust! Not that things like that bother me, because they don’t. They’re just curious, but when your feeling like a lesser human, the last thing you want, is any attention drawn to you. I just want to go home! My wife suggested on the phone, to self discharge. Good idea, but how? I can’t go anywhere. I’m totally stuck!!!

I never want to feel like this again! Not ever. I just want to go home, and have the dignity of being able to go to the toilet before it’s too late! Yet, I can’t, not until my wife can finally get here, if they let her in!

Oh Happy Day 😁

As many blog writers will tell you, through this therapy of sorts, you often receive contact from readers, and some even turn into friendships. I started conversing with my lovely friend Maggie quite some time ago when asking questions on amputee sites. Before my amputation, and when I first discovered I had CRPS, I found the lack of information out there quite astonishing, which is why I decided to write this blog in the first place. I didn’t think for a second that I would end up here, practically begging for treatment, and then finally finding that one Doctor who will help me, because of the amputee sites, and then this blog. Yes, with thanks to Maggie, huge thanks, who kindly put me in contact with her doctor, I am finally on the road to having a diagnosis, and I couldn’t be happier, or more thankful to wonderful Maggie.

I hope she won’t mind me talking of her, but she is one of the kindest people I have ever had the privilege of conversing with. She always checks up on me, and reads my posts, and her kindness has now put me on the road to treatment. For that, I am so greatfull and can’t thank her enough. I know she will read this, so to you Maggie, I thank you so so much.

So, last Wednesday I had a consultantation with a Doctor who is a specialist in stump issues. I was put in contact with her secretary, who booked the appointment. It was via zoom. I was extremely anxious, as I am so used to Doctors dismissing me and lumping everything under the CRPS brush. But to my amazement, she did not. She listened to my symptoms, and guided me through a self examination of my stump. The whole process took over an hour, which is the longest time I’ve spoken to anyone since the surgery. At the end she spoke of a couple of things which could be causing the problem, and what we can do about it. So, when I had surgery, the nerves are cut. When this happens they have nowhere to go and nothing to do, so they go a little nuts! Sometimes said nerves can also be fighting against a suture or clip put on the end of them! So she thinks that my popleteal nerve is either doing this or trapped. So the plan now is to do an ultrasound and some other tests to see if this is the case. This was the first thing which amazed me. I’ve been booked twice now for an MRI. Being told by the non specialists that this is the only way to find a neuroma. What if it isn’t a neuroma, I would ask? Well then we can’t help, they said! If I questioned it, I would be shut down and made to feel as if I had done something wrong. So to find a Doctor who is willing to explain, and say that an MRI is not only the best way, but not the only way to find issues, was just wonderful. It’s as if realising that your not mad!! So, now the plan is to await my appointment, and take the trip to East Grinstead for tests. If it shows what we suspect, then book for TMR surgery. I will explain what that is in future posts, if it is on the cards, but basically it will give my nerves a job to do, and stop them complaining so damn much!!

I honestly can’t even explain how happy I was after this consultation. Someone not only listed to me, but also may be able to help. It meant that some of those dreams which I had lost, may be achievable again. I may be able to walk again! (At least a small portion of the time, I will still have the crps! There is no cure for that bit!). But to have a chance of a reduction in the pain I’m in…and that is everything.

I celebrated with one of my first little wheels in ages!!

Dying for treatment!!

What crps look’s like! I’ve always been against showing stumpey, but to show people is to help them understand. I am not ashamed of stumpey!

Anyone with a chronic pain condition can testify that the road to successful treatment can be somewhat of a minefield, when you have more than one condition. This minefield becomes even more chaotic when Doctors can only see one condition, and deny the possibility, or sheer presence of another. Case in point – I have CRPS in my left stump. I also have this other, yet to be diagnosed issue. I saw a lovely Doctor (finally!!) Who I must say, seemed a little out of his depth, but couldn’t see past the CRPS. No matter how many different ways I explained the different types of pain I’m in, he just kept going back to the CRPS. Frustration doesn’t cover how I felt! On the day, I had my wife with me; and my Blesma representative (amazing veterans amputee charity) wrote a detailed email prior to my appointment, explaining the circumstances. Yet with two advocates, he still seemed to be blinkered to the possibility of something else. I started to feel like an orange ribbon, like the emblem of CRPS charities, and that’s all people see. The prosthetists, the physio, and now the 1st Doctor I’ve seen face to face (other than my GP, who is amazing!).

I am a registered nurse, and throughout my career I have been used to the medical terminology used, and how things work within the NHS, and am yet to receive any tests, or treatments, or interventions of any kind. Instead, I’ve been passed from pillar to post, around the roundabout and house’s, getting nowhere! Meanwhile, the pain and effects of pain, are taking away the enjoyable parts of my life. So I can’t help but worry what happens to those who don’t have an advocate, or a realisation of what should be happening? It’s not easy to speak up, and describe your own condition when your Doctor is telling you that what you are saying is rubbish! When they can’t see past your ‘other’ condition; or are simply out of their depth. How many people out there are desperate? Desperate for treatment? Desperate for someone to listen; really listen to them, so they can have their pain investigated and have a chance of a meaningful life. I have been a nurse for 14 years and have had the privilege of working with some magnificent Doctors and specialists, but I know first hand that anyone can slip through the cracks, or be ignored, or even not believed! This, despite the mantra which all us care givers are taught to abide – “pain is what the patient says it is”. Not all health professionals remember this! Instead we often get labeled as ‘junkies who are just after medication’, or they sometimes go to the other end of the spectrum by medicating, and medicating some more; chucking a plaster over it, instead of diagnosing it!

How many people with pain conditions have reached the point of absolute frustration? If a person is telling their care giver that they are in pain, isn’t it their duty to investigate why? And to treat them. If they refuse to do so, or ignore them; isn’t this pure medical negligence? When, my Mum was in agony with a variety of conditions, she said to me “If I was a dog, they would put me down”, yet we are left, suffering! These people who are responsible for leaving us with such suffering are basically condemning us to death, One way or another! When your pain is horrific and no-one will listen, or help… what else can you do? I was extremely worried and shocked when I learnt that according to a web based survey, 20% of CRPS sufferers had attempted suicide, and 46.4% reported suicidal intentions. This is shockingly 6x higher than those with depression, according to a psychiatry study. With statistics such as these, for my condition alone; can Doctors really justify their ignorance to people who are in pain? I would be lying if I said I hadn’t considered it. Especially with the pain of flare ups, and frustration of no intervention and poor treatment!

According to oatext.com, and I should imagine, anyone with a chronic pain condition – “chronic pain patients are at elevated risk of suicide”. Shouldn’t those who refuse to treat, refuse to listen, refuse to test, to diagnose, to intervene, be held accountable for their actions? Instead of leaving us to suffer? Shouldn’t they be referring us to those who do know how to treat our conditions? Those who may be interested! Isn’t that the definition of ‘proper care?’. Not condemning us to a life of suffering!

Here we go on the merry-go-round!!

The NHS merry go round! Better to be on it that off of it though! So, today was the big day in Bristol. The obligatory readiness of the meds and stuff for the journey, began the day. It took a respectable hour and a half to get there, a nice easy drive along the motorway. I was somewhat perplexed by the referral being to the prosthetics centre, but I was just rather happy to be seen by someone. We arrived at the freezing cold centre, and waited. After a while a lovely lady came out…she was a councellor. She showed us into the room with the new consultant! He also seemed nice, but rather out of his depth. After an hour of questions, and going round and round in circles, I felt like we were getting nowhere. It’s like no one can see through the crps. He looked at my leg, and marveled at its shiny, mottled, hairless effect! Turning to the councellor and talking her through the obvious signs of CRPS. Thanks to her, she pointed out the left side, and how it was bulbous and white, and obviously different to the other side. Eventually she chipped in and asked why he couldn’t refer me for an MRI, instead of sending me back to Exeter again… Back to those who have ignored me for the past two years! He eventually conceded that they could refer me for an MRI. He kept asking why we would want to drive so far for treatment, when we have Exeter there… I kept trying to explain, that they are not giving me treatment. My poor go has referred me so many times, and yet…nothing! I told him that I felt completely neglected, and deviated by the sheer ignorance.

So, they have now referred me for an MRI. We are hoping it will come through soon, but I was referred for one in November, and am yet to hear anything. He said to take the first one!! I left the appointment hopeful, but I so wish they would listen. He said that all of us CRPS patients are basically experts in our own condition. If that is what they really think, then surely they should listen when I tell them that the left side of my leg feels different to crps. Yet it all seems to fall on deaf ears! What have I got to do to be heard? To get a diagnosis…and treatment? They basically expect me to just live with it, and not ask for help. I have a chance at walking again, at least some of the time…. Why wouldn’t I fight for that? I can’t live confined to a wheelchair when I know there is hope that I may not need to be…..

Where is the lottery when you need it? I used to daydream that if I won I would design and build my own house. Now I dream of paying for someone to look at my leg and sort it out so that I can walk again. This is not something I should have to dream about, it is possible. I wore a prosthetic before, and could again, and all that is in my way is this other issue! So, I will await the MRI, and cross all fingers and remaining toes that it comes soon.

Breathing and such…

For the past two weeks, I have been attending another pain management course via zoom. This one is slightly different from the last one, as it is targeted towards CRPS. I am half way through my second week, and it is quite helpful (at the start of writing this). It has been great to talk face to face with other sufferers of this rediculous condition, and hear stories which mirror each other! The only thing which differs is the fact that the others have had treatments of all different kinds, and I have not. But on the positive side, I have had the opportunity to learn about the treatment which seem to have a good effect on pain. One lovely lady recieved Lidocaine infusions. I’ve heard of them, but obviously have not been able to try them…and the results seem to be really positive. Hopefully when I seen the people in Bristol, I may be able to have the chance at some treatment. I am extremely hopeful anyway!

My introduction to the pain management course targeted at CRPS.

I would thoroughly recommend the course to others with crps. It offers a different way at looking at things, and a realisation that the pain is there to stay, no matter what you do! Sounds ominous! But you can look at this in two different ways; using it, or not! I am not cured; far from it, but it doesn’t offer that. It offers a chance to try to live with it. Now I’m only on day 1 post course, so I can’t tell you if I am going to be able to apply all of the measures, or that they truly make a difference, but what the course has given me, is an opportunity to try; and some new knowledge of my condition.

As for Bristol, I am hopeful that this will be the beginning of a new chapter. I have been almost 8 years with this condition. It took 5 to get a diagnosis, and then it came back post amputation. I’ve now had it for two years again. Inspite of this I walked with a prosthetic for almost a year. It wasn’t just the CRPS which stopped me being able to wear a prosthetic; it was this other issue. The problem when you have something like CRPS is people lumping everything else under the same heading. When you have CRPS you know what it is, and what it feels like (you have no choice in the matter), so when something else crops up, you know about it! My hope is that I may be able to wear a prosthetic leg again, at least some of the time! I’m not asking for miracles, just a chance of treatment, of a diagnosis, of some intervention. A chance to be me again. I know I will never run again, and believe me, that has been the most difficult part to accept, but I could at least walk, sometimes. I refuse to give into this condition. I started to…and believe me, it’s not a good place to be…

Progress and reflection…

What a strange world we live in, where we have to beg and plead for treatment! I find it absolutely rediculous! So, as you may be aware, I am fast reaching my 2nd ampuversary. Yes, almost two years has passed since I opted to have my leg removed due to the amount of pain I was in. You also know, that I was unfortunately one of the unlucky ones where my crps returned. Yet I will never regret the decision I made. I could not live in that level of pain, and saw a possible cure, so took it! Now, I am still in the same situation… However this time it is slightly different, as half of the pain in my stumpey is caused by something yet to be investigated or diagnosed!

How do I know it is different? Anyone with CRPS will tell you that there is no mistaking the pain it caused. Burning doesn’t even cover it! Yet the other pain I have is completely different. It responds, albeit only slightly, to pain medicine, whereas the crps does not. It is the reason I cannot wear a prosthetic. To be fair I could only wear one for a short time because of the crps anyway, but when you can’t walk at all, a few minutes, half an hour, of walking is everything. It was recently suggested to me that perhaps the doctors are ignoring me because I complained about the treatment of the pain consultant in Exeter, and her accusing me of, and I quote ‘self mutilation’. To which the hospital tried to tell me that I was lying! This is despite having a witness to the conversation and a letter from her proving her, frankly, malpractice. Where, and I’m sure I’ve mentioned before, she planned my admission to hospital to administer a block 4 days prior to my amputation, and then did not turn up to give it! This, as I’ve been informed by a very experienced pain doctor, could have been the reason why my crps returned! So now because I spoke up, I am being blacklisted for treatment?! How on earth is this even possible, let alone moral! I have been an nurse for 20 years, if you include my training, and part of that training states that you treat everyone the same…there is no discrimination. Yet because I chose to speak up…. To say something about a Doctor who did something wrong, I am being neglected because of it! It is just disgusting!

I love the NHS, and have worked for them for half my life… Yet this situation is not just isolated to me. I have heard of other stories of similar discrimination….. Anyway, there may be some light at the end of this very long tunnel. Blesma, who are an amazing charity, have been trying to help, and get me the treatment I desperately need, have finally managed to transfer my care, or lack thereof, to Bristol. So I am now awaiting an appointment, with, hopefully someone who will help.

To be honest, being left to suffer like this has taken so much from me. I have had to take a learning break from college, because the pain has got so bad that I can’t concentrate. My exercise has gone down considerably, as I can’t stand the cold on my leg, and am having so much pain that I cannot move most days. I haven’t left my appartment for about 3 weeks now! Things are pretty rubbish, I don’t mind telling you. So to have no treatment in sight, is just disgusting, and soul destroying! So now to see some light, is just miraculous. However having two years of my life, destroyed because of speaking up against abhorrent behaviour, is just disgusting. We should not be silenced by mistreatment… Surely we should be aloud to speak out about bad treatment… I feel very lucky that I have Blesma in my corner.. I worry for those who do not have anyone.

New year… New drugs!!!

Anyone with a long term pain condition will tell you, that their home becomes a variable pharmacy of medications. When you have CRPS you will fast realise that most of them do not help at all, but you take them. You take them because the do a little something, and more importantly, give you a sense of control, which this condition; any pain condition, removes. I have tried every sort. I am allergic to all of the ‘pentins’ such as Gabapentin etc, and all the medications which help with neuropathic pain; and so my only options are Opiates.

I have had all of them, bar one. For some reason, I have always been reluctant to have the dreaded Oxycodone. I’m not sure why. Irrationality probably, and worrying of addiction. Which is rather silly, considering any of us in long term pain, are medication dependent… It comes with the territory. But after trying all the others, and my recent disaster of a medication, which began before Christmas; I am now beginning a new regime of a medication called Targinact (more about this later!).

So, before Christmas I was advised to try long acting Tramadol Hydrochloride. I had been on tramadol before, quite a lot of it before my amputation, and it caused some awful mood swings. But after reaching desperation caused by repetative flare ups, I decided to give the long acting ones a go. I was told that it could stop the amount of flares I was getting. So certainly worth a try.

Well, at first it was quite good. Almost over night I saw a reduction the flares and all seemed to be looking up. Then after only a few days my poor wife noticed a difference, and I remember the moment; she said ‘your not due on again are you? It hasn’t been a month yet’!! So, needless to say, I was acting like I had the worst PMT ever. I shrugged this off, but did start to realise that I was getting rather down, and teary. My insomnia was getting worse than ever, and I began to not handle things too well. Little problems began to seem as if gargantuan ones! It was as if I was living in a cloud of stress and negativity. My anxiety and depression was getting out of control.

Christmas is normally my favourite time of the year; always has been! Yet, I struggled to find any happiness here either. I thaught it may have been the news of my dear Sister, which did contribute; but it was something else. It was the medication. Even then I didn’t fully realise the extent as to how I was behaving until I finally spoke to my GP and asked to try the other medication which had been recommended. The only one I had not yet tried. I was given 5mg of Targinact, which is Oxycodone and Naloxone combination. I was given this particular sort because I suffer with chronic constipation as well, and the Naloxone bit gets rid of the constipation causing part of the opiate. Now, the dose was massively too low, and I ended up spending one of my worst 12 hours ever, in excruciating pain and going through the worst withdrawals I’ve ever had. Shaking, cold sweating, legs hurting so much, it was as if someone was scraping out the marrow with a spoon! Yet, through it all, when my wife came home; after only a few short minutes she simply said ‘thats the first time I’ve seen you smile in months’. Through all the suffering…I felt better. The fog had started to lift and I felt more like ‘me’ than I’d felt in years!

Unfortunately I had to temporarily go back on the dreaded Tramadol for a week more, as the dose was far too low of the Targinact, and my GP had to seek advice as to the correct dose… So again, I was back to stressed fog! Which was good in a way, as it cemented my suspicions.

Now… I have been on the new drug for 4 days. We are still finding the right dose, but suspect that we are nearly there at 40mg… Considerably higher than the original 5mg!! Explains the withdrawal symptoms!! But more importantly I feel so much better, and am behaving much better. My wife is happier. She deserves a medal for what she has put up with! She is truly wonderful.

It is only now that I can accurately reflect on the true horrors of this drug. I’m sure it doesn’t cause problems for everyone, but I have subsequently heard of quite a few. The listed side effects don’t really cover the actual experience. I have recently even found that it was affecting my monthly cycle. I thaught I was going through very early menopause, as my periods were extremely sporadic, when they had never been before; but this was due to the Tramadol as well! So why am I telling you all of this you may ask? Hopefully if there is someone who you know, or even yourself that is suffering such as I was, that is on a new medication; it may show you that you can do something. No one should have to suffer, just to have pain relief. So many of these medications really help people, but they also can come with awful side effects. If you are suffering, I would speak to your GP about a change. Ask yourself if there is a change in your mood, or ask others. We need the pain relief, but when medications affect our lives so dramatically, it is not living! It is torturous.

2020…. Thank goodness it’s gone!

So, as we are all probably thinking right now… Christmas is over, and wasn’t that a strange one? I personally didn’t change much. I live spending Christmas with my wife and Cats, which we did again this year. Unfortunately we didn’t get to join our friends at their annual Christmas Eve party in kentesbere, which is just amazing. My lovely wife Cat, made such an effort. She panicked on Christmas Eve that she hadn’t really gotten me any presents, and went off with the bank card…. Aaahhh!!!! Is all I can say! I asked her to get a £6 bottle of fenjal moisturizer for the mother in law. We get her some every year, to go with other prezzies, and we’ll betides our forgetting… So off she went… Now we share an account, so when the card is used I get an instant email to say what has left the account! So it went a bit like this… £15, £25, £8, £65, £49….. What…stop! Hold on a minute!! What the dickins has she been buying for that lot!! So I decided not to panic. I was obviously in for a very lovely Christmas this year…

So on Christmas Eve she arrived home, with a few rather nice looking bags, one with l’Octaine on it….I know that shop…I walk past it because it is rediculously expensive…. But there was a bag! Then another from the perfume factory…. Well, I like that too. So quite good so far!

So she sent off to wrap up the prezzies, and slowly and subtly baught into the conversation that she couldn’t find the fenjal stuff for her mum and so baught a nice little set from l octaine……what!!!! What!!!! This is for a woman who thinks that fenjal is the height of luxury and prefers dove shower gel over all others. So my wife thaught that spending £49 on a soap, a bath bomb and some shower get, was a good decision…especially for a woman who couldn’t care a less!!!

My prezzies were lovely. My wife has no concept of bottle sizes for aftershave, and so just got me the biggest bottle ever of Calvin Klein at £65 for the bottle! Her thinking was, it will last me a couple of years!!! And it probably will…and then some!!

Our baby puddy tats has a whale of a time. Lots of prezzies and treats. It was wonderful to see them having so much fun.

So most of you know the worst thing this Christmas. I found out just before that my big sister was poorly. She was fighting for her life in hospital. She has numerous health conditions, and then contracted covid as well. We were told that she was not going to make it..but we thaught there may be a chance. I didn’t get to see her due to the covid restrictions, but her children did, and that’s the main thing. She loved Christmas as much as me, and she made it through Christmas 🎄. But then took a bad turn and passed away on new year’s eve. By niece said she would go out with a bang…. And she certainly did. ♥️

This is one of the few photos I have of her. My sister, Linda in the middle holding my nephew Michael. I’m on the left in the white shirt with my Niece Amanda, and the other two are friends of Linda’s.

I can’t believe this is one of the few photos I have to remember her by. I can’t believe she is gone. It had hit me like a whopping great sledge hammer. She was only 49. That is not old. There was so much life she should have had. Addiction is such a deviating disease. So indiscriminate and unfair and cruel. she deserved a long and happy life, not one of pain and suffering. ❤️

I will miss her till the day I die. I am proud she was my big sister. We had lots of fun when we were growing up. Never saw eye to eye as adults, which is one of the reasons why we weren’t close in the past 14 years. But I still loved her, and always will. ♥️

So now what of 2021? Who knows?

These are my highlights of 2020, for wheeling and cycling.

I am hoping to get back out there, and raise some money for those who have helped me so much. The Aaron Lewis foundation and BLESMA. I hope to complete a half marathon and then a marathon or two… And then who knows? This year I hope to finally get some treatment for my leg, for the pain I am in and for the new issues! With a lot of luck and determination, I am determined to walk again. Even if it’s only for a few metres a day, that’s fine…bit more would be amazing. Bring it on!!

So for the 12 months ahead… Well, my college life will be tricky, on line learning is a nightmare, but you’ve just got to get on with it!! It’sa nightmare getting any treatment for any problems, but that’s hardly surprising. I don’t blame the government. I think they have an impossible job, and are never going to please everyone. I have been looking at the unfolding situation right from my window, and you can see how diabolical it is becoming by seeing the amount of cars in the car park…all day over Christmas….full. people just wondering about the quay. No social distancing going on anywhere. 80% of them were not exercising. Just meeting for a catch up… Which is fine when we’re not in the middle of a crisis! It worries mule that they will even listen now with this lockdown, because they didn’t on the last one. It was busier than ever out there. I had to give up hand cycling because I couldn’t move… And all the years I’ve been here, I’ve never seen that!

Took this fro my bedroom window. As the cars were piling in for the quay!

I hope beyond all hopes, that people listen this time to the advice. It is not fake, and it’s no one else’s fault that those who are refusing to follow the rules. And we see them everywhere. We can all be responsible for saving lives. The lives of our loved ones, and friends and family. It’s down to us. 👍

I hope you all have. Wonderful new year. Make the most of what you can, and never give up. When life throws lemons…make lemonade 👍🎈😁