Progress…

So, in the past couple of weeks I have been making some good progress in training. I have also added another 2 events to the calendar. The Cardiff summer half marathon on the 3rd of July and The Rehabilitation Triathlon for amputee veterans in Plymouth on 23rd June. Both great events, and right in between the others. This brings the official total to 7 events, although there will be a number of virtual ones as well. On theat subject, I managed to complete the niagra falls conquer challenge yesterday, 113km in 29 days. I was very happy with this, as I’ve had to have almost 2 weeks off from training with various flares.

So, I have had some questions about the gloves which I wear for wheeling. I purchase work gloves from ebay, which retail from £2-7 per pair depending on the thickness. The orange ones in the photo below are warm lined and waterproof, which is brilliant for the winter. The red ones come in various types, and you can bulk buy. They are great for warmer weather, and when it is very warm, I lop off the fingers and hey presto, perfect summer wheeling gloves which virtually eliminate blisters. They are all gripped with a form of latex which is perfect for wheeling.

As for post workout nutrition, I use a sports drink to replace lost electrolytes. Very important if you want to avoid cramp, or other more potential serious health problems caused by an imbalance of electrolytes. I use High 5 as it is gluten and sugar free. Food wise, I’m a bit of a sucker for midget gems, so normally have 50g of them, and some form of protein and carbs, such as a protein bar.

As mentioned, I have now finished my 4th challenge with #theconquerchallenges. They are great fun to do, and really keep that motivation up. I have also now included handcycling, swimming and weights at the gym to my weekly program. I do have a day off a week, and sometimes more when my body dictates it so. Probably the most annoying part of CRPS (next to the pain) is the how unpredictable it is. Also Fibromyalgia follows the same trend = completely unpredictable. Although I have found a couple of triggers, which are so important to identify. I have discovered that cigarette smoke, and pungent hair spray, as well as post menstrual hormone changes are a big trigger for me. These three put me out of training for a week at a time. With CRPS, my biggest trigger is sugar and stress. Also anything touching my leg. So I have to almost wrap myself in cotton wool, and behave, just so I can train. I have had to give up alot of other pursuits to complete this year’s challenges, but it will be worth it, and I’m hoping Blesma will reap the benefits of my labour.

Yesterdays wheel (above), & medals so far 😊

It’s 6 weeks before my first event. My lovely wife will be doing the first 2 with me (running), which will be wonderful. It will be the first time we have both started on the same start line, and her first ever events. I am so happy to be able to share this with her. So, off to do some more training today. Wish me luck!

20 days and counting …

As you may have gathered, I’m still in hospital! I mistakenly thought I’d be in and out within 5 days. I was pre-warned that it could take a couple of weeks, or possibly longer, but I thought, I’m tough, I’ve been through lots already, I have a very high tolerance to pain… None of those things make any difference to any hospital stay. It is impossible to predict how you will recover, or how long it will take. I can say, that previous to this experience, I was certain that I had reached the very hight of my pain level. That pain couldn’t possibly be worse that CRPS flares with neuromas… I was wrong. CRPS flares, with surgery is far worse. I was warned, so it wasn’t lime I went into this not knowing that things would be tough. But usual me… I shrugged it off, and thought to myself ‘oh well, what’s a little more pain?’ Well, I can tell you… a lot!!! I’m feeling battered, bruised, sore, sick, tired, and missing my babies. All that said, however, things are steadily improving, and the care and treatment I have received here at the QVH hospital in East Grinstead has been just incredible. All of the staff are just to kind, and caring. They have been there for me through night and day. I know you must be thinking, well thats what is supposed to happen in hospital, well let me say… it doesn’t always happen. After being a Nirse myself for 14 years, I’ve seen a substantial lack in compassion within the field. Yet here, they all have oodles of it. They are warm, and friendly. They make me cups of tea in the night when I’m awake in pain. My surgeon Tania Cubison, the genius, always comes by every morning to check on me. The pain nurses have been in every day, trying everything they can to see me through the tough times. The anaesthetists have been to see me every morning and evening to administer boluses into the nerve catheter in my leg. I am honestly, truly amazed.

So, we have lowered my intravenous pain medications now, and are lowering the local anaesthetic meds going into the nerve catheter in my leg. The pain is rather bad a couple of times a day, which is when the anaesthetists step in. But we’re making improvements in that respect as well. The plan is that the nerve catheter needs to come out by the weekend, as its been in too long by that stage, and could increase risk of infection, which I definitely do not need. So watch this space. Hopefully I will be home by early next week, if not sooner 🤞

Systematic neglect & lack of treatment!

Sat here this morning, following another sleepless night of pain and discomfort, I can’t help but wonder how things have gotten this bad again. So I started to think about it. I certainly know that I’m not the only person who is suffering like this. There are so many others. Then something dawned on me. There is a distinct lack of action and compassion which our care system and givers are showing us.

As an NHS Registered Nurse myself (at least for a few more months, until my retirement is finalised), it is hard for me to look at or admit to the systematic failure within certain areas. My experience, as some of you are aware, is that of disregard and systematic neglect. Other than my acting GP, and the amazing treatment at kings veterans hospital in London, most others have done nothing but lend accusations of me lying about my condition, accuse me of self mutilation, or ignore me entirely.

My typical day. Spending all day with boiling heat packs to try to help with the pain.

Over the past 14 months, I have received no appointments, No investigations, & No treatment despite numerous visits and phone calls to my GP, which resulted in numerous referrals by him, and yet no appointments, investigations, treatment. My leg has never been examined or looked at at all. Instead I have been left trying to self treat the most painful condition known to human kind.

My condition, returned within weeks of my amputation for the condition itself. How do I know? Trust me, when you’ve had CRPS once, then opted for an amputation to rid yourself of it; there’s no greater fear than that of its return. Believe me; once you’ve had it, you will never forget it. To put it into context for those of you who are lucky enough not to know CRPS, I would ask you to imagine the following: Stick your foot in the oven and turn the temperature up to 300 degrees, and then sit there until you can’t stand anymore, but you can’t remove your foot. That pain and sense of urgency you feel to make it stop, is what any CRPS sufferer is living with every day. There is a reason it’s nicknamed ‘the suicide disease’.

I am sure we have all heard and seen many excuses for the actions, and lack there of, from some care givers. Well I say that there is no excuse for any of it. Refusal to treat, to act, to listen is simply neglect.

I am not writing to elicit a complaint, but to show solidarity to those who have suffered, such as I, at the hands of the Illinformed, and frankly neglectful people. Rather than ignoring us, hurling accusations toward us, stripping us of our medications, and leaving us in unbearable suffering; would it not be a better use of time to look into this horrific condition. My belief as a care giver is to learn and research any conditions which are new to me, and understand them….not make a judgement of ‘it’s all in your head’ It is not.

I had a physiotherapist acuse me of lying about my condition because I needed a wheelchair (and this was after my below knee amputation). A GP spent an hour detailing various similar stories to try to elicit a response from me, which matched her beliefs; that my condition was all in my head. An experienced pain Doctor, who had me in tears, when she told me that she thought amputating my leg because of the agony I was in, was ‘self mutilation’. Even someone I called a friend, tried to tell me I couldn’t possibly have the condition I have, because I don’t make a Broadway show of the pain I’m in. Newsflash idiot: the only person who gets to see me like that is my wife. If I’m having a flare up, I don’t go out or see anyone!

So what can we do? I wish I knew. But I do know that sitting back and letting this happen time and time again is not the answer. We need to build more awareness of our condition. We need to stand up to those who deny our condition exists.

I had the privilege of attending a pain management course which was organised by BLESMA at Kings hospital for veterans in London. The course was via zoom and it was completed a few weeks ago. I had the opportunity to learn more about the science behind pain, and techniques to help. I was told every day that it is not in my head. They were and have been since, incredibly supportive. This is the kind of treatment we deserve. I find myself very fortunate to have been accepted on the course.

This is the kind of treatment we deserve and are in desperate need of. We need to educate ourselves with an armour of informed responses, for those who do not know or understand our condition. Know our treatment options, so we can give our care givers options and ideas, and question when treatment is not given. Then maybe combined with our knowledge we can back up the need for them.

This condition is rare. It is not widely researched or known about; so those of us as the sufferers have the opportunity to educate, I form and help with the treatment we are lacking.

This simply shows where CRPS sits amongst other pain conditions. Enough said!

Ive got a logo!

This is my new logo for the event. I have made some clothes trying to get things out there a bit. I have a hoodie, baseball cap, T shirt, vest, and a long sleeve T shirt. All with my logo on. Cat also has a hoodie. Theyre all awaiting sponsorship logos. I still havnt got any definate sponsors as yet. I am sending emails out all of the time. I will persevere and perhapse change the email. I was sent a T shirt and hoodie from Saltrock which will come in handy post training. Sunwise are also sending me a pair of sunglasses. All of these things are absolutely wonderful, but none of them are getting me closer to my goal. I need to get my event out there. I have been speaking to the British Legion about my wheelchair, and they said they would help me. Im just awaiting a home visit at the moment. Ive just joined BLESMA too. Which is for veteran amputees. They have also been really helpful so far, and will be sending someone out to help. So I have made some progress. Now keep all fingers and toes crossed for the new chair. I only have 15 to cross now, so I need help with the others.

I had a really nice suprise last week. Steel bones had put a feature on their facebook page and web page about me, and what Im doing. I thaught that was lovely. So things are getting out there more and more. But not enough yet. I despirately need some sponsors. But I think that everything is a learning curve, and what doesnt work the 1st time, may need to be changed and adjusted. I will not give up.

TRAINING:

This has been steady. The Gym sessions are going great. Getting some good strength and endurance. Were trying things that weve never done before, which is so much fun. The wheeling or pushing, some people call is, is going well in some ways. But I really just need the chair. The NHS finally came up with my replacement. I was really hopeful. I thaught that it must be a little better than the one I had. It futs better, in that the width of the seat is smaller, and so it fits, but that is it. The extent of the improvements stop there. It isnt lighter, even though its made up of half plastic! The seat is too short. The wheel I use for self propulsion is really difficult to grab and I cant use it without gloves. My padded gloves dont stick at all, like they used to with the other one. I could go on, and on. Safe to say, it is a huge disapointment. I went out today for my 1st training session and it was disasterous. Really slow. The wheels seem to love to go towards every gradient. It doesnt free wheel at all, even downhill! It does have anti tipping, which is amazing. I actually think that the red one was better for training, and thats saying something! But as always. I will keep trying. Keep plodding on. Theres always a plus side to everything. Maybe this is supposes to be this way. Give me some good strenth before I get my real chair. I hope so anyway.